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The Institute for Molecular Medicine

THE FOLLOWING QUESTIONS WERE ASKED:

QUESTION:

Why does the Institute for Molecular Medicine no longer test individual patients' blood for the presence of chronic infections?

RESPONSE:

The Institute for Molecular Medicine is a nonprofit research organization and cannot seek payment for any tests done at the Institute's facilities. Therefore, the Board of Directors made a decision in 1999 to only accept blood or other samples for testing if a patient is enrolled in one of the Institute's approved clinical trails and clinical testing is an approved part of the trial. In addition, the Institute's attorney stressed that the liability for conducting clinical tests outside of an approved clinical trial is unacceptable. Therefore, we cannot test individual patients' blood, even if it is sent to us, unless the patient is part of an ongoing Institute for Molecular Medicine clinical trial and the test(s) has been approved as a part of the trial.

QUESTION:

Why can't I make an appointment to see the Institute's medical staff? Why can't they recommend a physician in my area?

RESPONSE:

The Institute for Molecular Medicine is a nonprofit research organization not a clinic or medical practice. It does not see or treat patients, except in the context of ongoing approved clinical trials being conducted at the Institute. Sometimes Institute staff will consult with physicians or even patients concerning their medical problems. Such consults are not formal visits or formal clinical assessments or recommendations on their diagnoses or treatments. They are usually informal advice- and information-seeking conversations to assist patients and physicians in finding additional information or solutions to their problems. Such advice is never billed and is given on a humanitarian basis only. It is the patient's responsibility to seek medical care from a licensed health care practitioner. Unfortunately, as a nonprofit research organization, the Institute for Molecular Medicine cannot make professional referrals.

QUESTION:

Why do the Institute's information and advice for testing of chronic infections differ from the commercial labs that conduct these tests?

RESPONSE:

The Institute for Molecular Medicine has conducted various diagnostic clinical trials over the years and has determined that some commercial laboratories may not use optimal conditions for receiving blood and other materials and conducting tests on these materials. Based on its own research (most of which has been published in peer-reviewed scientific and medical journals), the Institute suggests that certain procedures are important and should be followed. For example, the Institute recommends that blood samples be sent to testing laboratories via overnight air courier in a Styrofoam box with wet ice in a plastic bag to preserve sample integrity. This is important because controlled studies at IMM have shown that some samples sent at room temperature can degrade before the samples arrive at their destination. If this occurs, it can result in a possible false-negative test result. Testing also requires a doctor's order.

QUESTION: 

Doxycycline--the dose is 200-300 mg/day or 2-3X 100 mg capsules, 2 in the morning…so does this mean if i take 200 mg, I would take both the capsules in the morning?  if I started at 300 mg, do I take 200 mg in the morning and the other 100 mg at night? Will generic doxycycline work the same way as non-generic and cross the blood brain barrier?  Will the starch filler in it cause Excess Candida growth?  Will Doryx work the same as Doxycycline, and is it taken at the same doses and time?  Is doxycycline best taken with water on empty stomach?

RESPONSE:

GNERALLY IT MEANS THAT IF YOU TAKE 300 MG OF DOXYCYCLINE PER DAY, THEN TAKE 2 X 100 MG IN THE AM (MORNING) AND ONE 100 MG TAB IN THE PM (EVENING).  IF YOU TAKE 200 MG PER DAY, THEN 100 MG IN THE MORNING AND 100 MG IN THE EVENING.  THE QUESTION OF GENERIC VERSUS NON-GENERIC IS A DIFFICULT ONE.  SOME PATIENTS HAVE SEEN DIFFERENCES BETWEEN SAY, DORYX (A NON-GENERIC GRANDULAR DOXYCYCLINE WITHOUT FILLERS) COMPARED TO THE GENERICS (MOST ALL HAVE FILLERS OF VARIOUS KINDS, MOSTLY CORN STARCH).  IF AT ALL POSSIBLE, GO WITH THE NONGENERICS.  PROPER DIET SHOULD SUPPRESS CANDIDA GROWTH BUT IN SOME CASES MEDICATION IS REQUIRED.  DOXYCYCLINE SHOULD BE TAKEN WITH A FULL GLASS OF WATER AND SOME CRACKERS OR OTHER FOOD, NOT ON AN EMPTY STOMACH.  ALSO LARGE DOSES OF PROBIOTICS SHOULD BE TAKEN 2 HR AFTER EACH DOSE OF ANTIBIOTIC.  SEE: TREATMENT CONSIDERATIONS FOR MORE INFORMATION 

 QUESTION:

 Is the herxheimer reaction a sign that I am killing off the bacteria and deactivating the viruses? Any other signs I should look for? If I add the two antibiotics and the antiviral together at the start, will it be too much die off for the system?

 RESPONSE:

 THE HERXHEIMER REACTIONS ARE MAINLY DUE TO STRESSED MICROORGANISMS STIMULATING CYTOKINE RELEASE BY INFECTED CELLS, SUCH AS VASCULAR ENDOTHELIAL CELLS AND MONOCYTES.  THE RELEASED CYTOKINES, WHICH ARE STRESS-RELATED BIOSIGNALLING MOLECULES, CAUSE ALL SORTS OF SIGNS AND SYMPTOMS OR WORSENING OF YOUR CONDITION THAT WE CALL THE HERXHEIMER REACTION.  WHEN YOU ARE UNDER THERAPY, THIS CONDITION WILL LAST USUALLY FROM ONE TO SEVERAL WEEKS AND SLOWLY RESOLVE, WHERE UPON YOUR SIGNS AND SYMPTOMS WILL SLOWLY DEMINISH AND YOU WILL FEEL BETTER.

QUESTION:

How long must I be off antibiotics and immune enhancement products before my blood is taken for testing?

RESPONSE:

Our usual recommendations are 4 weeks off all immune enhancement products, antibiotics or anything else that might affect testing. The reason for this is that the blood levels of intracellular infections, such as Mycoplasma, Chlamydia, Borrelia, etc., can be more easily suppressed by antibiotics and immune responses than the tissue levels.  Thus the blood levels may rebound slowly after treatment is stopped, whereas the tissue levels of infections are usually not as sensitive to treatment, and they take longer to suppress with treatment.  This is one reason why the treatment takes so long for chronic intracellular infections compared to rapidly growing microorganisms.  Another reason is that chronic infectious agents respond more slowly to treatment, and they are often not as sensitive to a variety of treatment approaches.

Prof. Garth Nicolson

QUESTION:

Dear Dr. Nicolson,

I am a CFIDS patient and have been diagnosed with both bacteria (Mycoplasma hominis) and  a virus (HHV-6).  What is the best approach for treatment?

RESPONSE:

MANY, IF NOT MOST, CFS/ME PATIENTS HAVE MUTLIPLE INFECTIONS—BACTERIAL, SUCH AS MYCOPLASMAS, CHLAMYDIAS, ETC. AND VIRAL, SUCH AS HHV-6, CMV, ETC.  WHEN THIS OCCURS, IT CAN BE DIFFICULT TO TREAT SUCH MULTIPLE INFECTIONS.  YOUR PHYSICIAN SHOULD KNOW THE LATEST THERAPEUTIC APPROACHES, BUT WE ARE AVIALABLE TO  HELP PHYSICIANS WITH COMPLEX TREATMENT QUESTIONS.  GENERAL INFORMATION CAN BE FOUND ON OUR WEBSITE UNDER “TREATMENT CONSIDERATIONS.”

PROF. NICOLSON

QUESTION:

Dear Dr. Nicolson,

How do I know which tests to order, and how do  I arrange for testing?

RESPONSE:

Please consult with the sections on our website titled Clinical Testing or Veterinary Testing for suggested tests for particular illnesses, or go to the website of International Molecular Diagnostics, Inc. (www.imd-lab.com).  Your tests must be ordered  by a physician, and the results must by law be sent to your physician.  You will be able to receive a copy of your results from your physician.

QUESTION:

I have a patient that is environmentally sensitive and may not be able to tolerate some of the recommended oral antibiotics.  How should I proceed with this patient?

RESPONSE:

Often patients who are very sensitive to antibiotics tolerate them better if the first 3-4 weeks are given i.v.  The reason for this could be the fact that some patients react very strongly to oral antibiotics because of gut-associated reactions, but after a few weeks of i.v. therapy their GI may heal to the point that they can now tolerate oral antibiotics.  Also, many patients (and their physicians) have noticed that they are less sensitive to environmental stressors as their therapy proceeds.   You can contact physicians at the Institute for Molecular Medicine or its affiliated clinics for more detailed information.

QUESTION:

Dear Prof. Nicolson,

I and a friend have tried repeatedly to get info about "immune enhancers" and their use for ALS patients, and got no reply. Do you have a list?

RESPONSE:

At the Immune Institute and the Institute for Molecular Medicine here in Huntington Beach, CA we are conducting an IRB-approved experimental treatment trial for ALS patients.   In addition to i.v. antibiotics and antivirals to treat their chronic bacterial and viral infections (found in >85% of cases), these patient are also receiving a combination of bioactive whey protein isolate (2X pouch per day in water or skim milk), Transfer Factor (6 capsules per day orally), and Veraloe Gold (1 Tbsp/day) orally as a part of the trial.  They are also receiving neural growth factors.  This is an ongoing clinical trial, and interested individuals should contact Dr. Darryl See of the Immune Institute or myself for more information.

QUESTION:

How can I tell if a chronic infection like the mycoplasma is being transmitted by my wife to me?

RESPONSE:

If your wife tested positive and you have slowly developed some of the same clinical signs and symptoms, it's a possibility that the infection has spread to you, and you should tested and if positive treated for the same infection.  These infections are usually system-wide (systemic) and can invade and affect practically any tissue or organ in your body. They are especially pathogenic in the nervous system, gut, joints and endocrine glands.

Prof. Garth Nicolson.

QUESTION:

I have recently been diagnosed with RA. I had complications from a C-Section and required blood transfusions. I was HIV-negative and have no problem with that but I had an infection that one week later they could not identify (Also, after receiving an immunization for Rubella, I became extremely ill). Is there any possibility of transmission of mycoplasma or some other bacteria from this transfusion or immunization? My immune system, in retrospect, was seriously impacted from that point on. 

RESPONSE:

It is certainly possible, and we know from a European study that about 6.5% of CFS patients came down with their illness after a blood transfusion.  (The same holds for RA)  Many of these patients later were found to have systemic mycoplasmal or other bacterial or viral infections.  In terms of vaccines, a recent publication found that ~6% of commercial vaccines were contaminated with mycoplasmas.  Vaccines, per se, are probably not a problem if your immune system is strong, but if you received a rare vaccine that was contaminated with a microorganism and your immune system could not suppress this infection, or you received multiple vaccines all at once, then it could cause problems.

There are various species of mycoplasmas, about a dozen are known to be pathogenic, and you were probably only tested for the 4 most commonly found species. (Note: we can also test for other mycoplasma species as well as other bacteria such as Brucella, Borrelia, and other pathogens that can cause similar signs and symptoms but are not mycoplasmas and would not be picked up on the tests for mycoplasmas.)  From your responses to antibiotics, we can only assume a bacterial infection.  We can't determine if it is mycoplasmal or a related infection from the clinical signs and symptoms, because they are general and not unique to mycoplasmas.

Prof. Garth Nicolson

QUESTION:

 Dear Prof. Nicolson,

There may be several parallel paths by which mycoplasmas contribute to ALS. Here is one possibility. There is a link between mycoplasmas and a known aspect of ALS pathology. Mycoplasmas need and use cholesterol. But oligodendrocytes require cholesterol to synthesize neurosteroids. Neurosteroids have neuroprotective properties such as reducing neuronal responsiveness to glutamate. If the mycoplasma population is large enough, they may use so much cholesterol that they drive down neurosteroid synthesis. Low levels of neurosteroids may lead to CNS disfunction and damage.

RESPONSE:

I WAS AWARE OF THE STEROID-STEALING PROPERTIES OF MYCOPLASMAS. THIS MAY

BE HOW THEY MAKE MITOCHONDRIA LEAKY--BY STEALING THE LIPIDS SUCH AS CHOLESTEROL THAT ARE IMPORTANT IN MITOCHONDRIAL MEMBRANE INTEGRATY. WHEN MITOCHONDRIA ARE LEAKY, THEY CAN'T GENERATE THE ENERGY NECESSARY FOR CELL FUNCTION, AND NERVES ARE THE MOST SENSTIVE CELL TYPE TO ENERGY DEPRAVATION.   I LIKE THE NEUROSTEROID-GLUTAMATE IDEA AND WOULD LIKE TO SEE SOMEONE FOLLOW THIS LINE OF INVESTIGATION.  OF COURSE, MYCOPLASMAS ALSO DO MANY OTHER BAD THINGS TO CELLS.

PROF. NICOLSON

QUESTION:

Based on my symptoms --- can we eliminate any of the mycoplasmas listed in your publications?) -- You've done  EXCELLENT WORK  -- Thank you !!!

RESPONSE:

ONLY THE SPECIFIC BACTERIAL SPECIES THAT TESTED NEGATIVE CAN BE ELIMINATED.  THERE ARE OTHER PATHOGENIC MYCOPLASMA SPECIES THAT WE CAN TEST FOR, AND THESE AND OTHER RELATED MICROORGANISMS CAN PRODUCE SIMILAR CHRONIC SIGNS AND SYMPTOMS.

QUESTION:

I've been off antibiotics for 6 weeks, and I am suffering from muscle, joint pain, sleep (lack of), etc.  Do I need to be back on antibiotics?

RESPONSE:

YOU PROBABLY NEED TO BE BACK ON ABX OR COMBINATIONS OF ABX, PROBIOTICS,

IMMUNE ENHANCEMENT AND VITAMIN AND NUTRITIONAL SUPPORT.  SEE OUR PHYSICIAN RECOMMENDATIONS UNDER TREATMENT CONSIDERATIONS, AND CONSULT WITH YOUR PHYSICIAN.

PROF. NICOLSON

QUESTION:

Our doctor did treat us with doxycycline for one year. The results were amazing. As stated in my last email, my husband eventually relapsed during the summer and the headaches began. Doxycycline does not seem to work as well now [as it did before], and it doesn’t have a huge effect on the relapse, so we moved to Biaxin which has helped the body aches, etc.  Is vasculitis [in the brain] a possibility?

RESPONSE:

Yes, there is a possibility that vasculitis caused by a vascular endothelial cell can result in disruption of the blood brain barrier and leakage, creating pressure in the brain that could cause severe pain.  It is very important that physicians consider that such patients should be tested for mycoplasmal infections, in particular, M. fermentans, M. genitalium and other bacterial and viral (HHV-6) infections.  Consult our website, www.immed.org for further information.

 Prof. Garth Nicolson

QUESTION:

My GP contacted an infectious diseases doctor  with some questions.  This doctor at indicated that your PCR and gene-marking tests only indicate a past history of infection, and do not

necessarily indicate a current infection.  Can you refute this?

RESPONSE:

ABSOLUTELY, YOUR PHYSICIAN IS WRONG ON THIS POINT.  OUR TESTS DETECT ACTIVE INFECTIONS BECAUSE THEY DETECT THE GENETIC PRESENCE OF THE MICROORGANISM.  THEY DO NOT AND CANNOT DETECT HISTORICAL INFECTIONS.  HISTORICAL INFECTIONS CAN, HOWEVER, BE DETECTED BY THE PRESENCE OF ANTIBODIES AGAINST THE MICROORGANISM.  ALTHOUGH WE ALSO OFFER ANTIBODY TESTS FOR PHYSICIANS WHO ORDER THEM, WE DO NOT RECOMMEND THE ANTIBODY TESTS FOR THE DETECTION OF ACTIVE INFECTIONS.

QUESTION:

My doctor insists that I must not have M. pneumoniae anymore since I have already been through so many antibiotics, and that I am not contagious; yet he refuses to test me with a test *he* considers reliable to prove it, because I do not exhibit the symptoms normally identified with M. pneumoniae (pulmonary involvement, chest x-rays, etc.).

RESPONSE:

M. PNEUMONIAE INFECTIONS CAN EVOLVE FROM PRIMARILY A PULMONARY INFECTION TO PRIMARILY A SYSTEMIC (SYSTEM-WIDE) INFECTION.  SHORT TERM ANTIBIOTICS CAN BE EFFECTIVE AGAINST A PULMONARY INFECTION BUT ARE UNLIKELY TO BE EFFECTIVE IN COMPLETELY SUPPRESSING SUCH INFECTIONS IF THEY HAVE BECOME SYSTEMIC (SYSTEM-WIDE INFECTION).   SYSTEMIC MYCOPLASMAL INFECTIONS ARE QUITE DIFFICULT TO COMPLETELY SUPPRESS, AND IT OFTEN TAKES QUITE A BIT OF TIME AND EFFORT TO COMPLETELY SUPPRESS THEM.  I STRONGLY SUSPECT THAT ONE NEVER COMPLETELY ERRADICATES SUCH INFECTIONS, BUT BY SUPPRESSING THEM AND USING IMMUNE ENHANCEMENT PRODUCTS TO BUILD UP THE IMMUNE SYSTEM, PATIENTS HAVE RECOVERED SUFFICIENTLY TO GO ON TO  NORMAL HEALTHY LIVES.

QUESTION:

The question of contagion continues to be a problem, because my home care worker cannot work for me if she or her kids are at risk of infection.  Our whole family has had colds this week, and I still fear that my sneezing and coughing is spreading my illness to my family.

RESPONSE:

IF YOU HAVE CHRONIC INTRACELLULAR BACTERIAL AND/OR VIRAL INFECTIONS, SUCH INFECTIONS ARE USUALLY ONLY SLOWLY PASSED TO OTHERS, AND IMMEDIATE FAMILY MEMBERS ARE AT HIGHEST RISK.  IF THE INFECTION SLOWLY SPREADS TO FAMILY MEMBERS, THEY WILL EVENTUALLY EXPRESS SOME TO MANY OF THE SIGNS AND SYMPTOMS RELATED TO THE INFECTION(S). NOT ALL FAMILY MEMBERS WILL BE INFECTIBLE, HOWEVER, AND SOME MAY SUPPRESS SUCH INFECTIONS IF THEIR IMMUNE SYSTEMS ARE STRONG.

PATIENTS ON THE APPROPRIATE ANTIBIOTICS ARE MUCH LESS LIKELY, IF THEY ARE LIKELY AT ALL, TO TRANSMIT CHRONIC BACTERIAL INFECTION(S).  SUCH INFECTIONS CAN BE AIRBORNE, BUT THEY CAN ALSO BE TRANSMITTED BY DIRECT FLUID CONTACT, ETC.  THEY ARE NOT VERY EFFICIENT AT TRANSMISSION; HOWEVER, SO IF THEY OCCUR, THEY WILL TAKE SOME TIME TO PASS TO OTHER MEMBERS OF THE FAMILY.  IN OUR STUDIES ON MYCOPLASMA-POSITIVE GULF WAR ILLNESSS PATIENTS, IT TOOK USUALLY 6-12 MONTHS OF EXPOSURE FOR THE INFECTION TO BE PASSED TO IMMEDIATE FAMILY MEMBERS AND FOR THESE FAMILY MEMBERS TO SHOW ANY SIGNS/SYMPTOMS. A U.S. SENATE STUDY INDICATED THAT THE MAJORITY OF SPOUSES AND CHILDREN OF GULF WAR ILLNESS PATIENTS EVENTUALLY DEVELOPED SIMILAR SIGNS AND SYMPTOMS AS THE SICK VETERANS, STRONGLY SUGGESTING THAT SUCH INFECTIONS CAN BE TRANSMITTED TO FAMILY MEMBERS.

PROF. NICOLSON

QUESTION:

IF I still have the mycoplasma infection, can  I assume it is present in my respiratory fluids?

RESPONSE:

YES, UNLESS YOU ARE ON THE APPROPRIATE ANTIBIOTICS.  IN THAT CASE THE EXTRACELLULAR LEVELS OF INFECTION IN YOUR BODY MAY BE QUITE LOW. THUS YOU MIGHT BE UNABLE TO PASS THE INFECTION TO FAMILY MEMBERS THROUGH AN AIRBORNE MECHANISM.  ALTHOUGH WE HAVE NOT DONE A CONTROLLED STUDY ON THIS QUESTION, WE HAVE NOTICED THAT GULF WAR ILLNESS PATIENTS TREATED FOR MYCOPLASMAL INFECTIONS APPEARED TO HAVE FEWER FAMILY MEMBERS INVOLVED WITH CHRONIC ILLNESSES.

QUESTION:

I just wanted to let you know how I was doing, because if it wasn't for you I don't know where I would be right now.  It is a long road, but it couldn't be any worse than what I have been through the past couple of years.  I have been on Biaxin and Levaquin for about 4 months now and a lot of my symptoms are improving.  I don't have the allergic reaction attacks when my skin and body get hot and red, and I feel as if I am going to faint.  My diarrhea has improved, but I still have it every 2-3 days.  I don't eat much because of it, but I have to make a trade off somewhere.  I have lost 30 pounds this past year, but I still am pretty good.  The death look in my eyes is not there anymore, and the color of my skin is significantly better.  People are commenting, now, that I look much better, versus, telling my family I looked terrible and what is wrong with me?

When I was taken off the Biaxin and Levaquin for 2 days and was put on Cipro, boy did I take a turn for the worse.  It took me about 5 days to recover from that, I was put back on the Biaxin and Levaquin.  If you switch antibiotics like that does it mean the Cipro may be attacking what the other antibiotics aren't?  Will my diarrhea ever go away?  Just when I think I have a handle on the diarrhea it comes back.  (can you answer this?)

RESPONSE:

The problem could be Herxheimer reactions due to die-off of bacteria that did not respond as well to Biaxin (clarithromycin) plus Levaquin (levofloxacin), or it could be that Cipro (ciprofloxacin) is not the best choice for a secondary antibiotic compared to the combination of Biaxin-Levaquin.  Also, due to its relative tissue penetration compared to other antibiotics, Cipro must be used at relatively high doses to be effective against intracellular bacteria.  You should consult with your physician.  You should also be taking lots of probiotics to help your gut during antibiotic treatment.

QUESTION:

Is there a test done using saliva that you could recommend?

RESPONSE:

WE DON'T RECOMMEND SALIVA TESTS, ONLY BLOOD TESTS, BECAUSE PHYSICIANS NEED TO KNOW IF THE PATIENT HAS A DEMONSTRATED SYSTEMIC INFECTION(S).  SALIVA TESTS MAY DETECT SUPERFICIAL INFECTIONS THAT MAY NOT BE CONSIDERED IMPORTANT IN PATIENT MORBIDITY.

QUESTION:

I have heard that my pets can get these infections (mycoplasma, chlamydia, etc).  My dogs and cats are showing evidence of chronic fatigue, diarrhea, weight loss, hair loss and other symptoms.  I have been sick for years with Fibromyalgia Syndrome, and I just heard about your wonderful new success with Fibromyalgia [patients].

RESPONSE:

If you have chronic infections, your pets can contract these infections from your or other symptomatic patients.  The types of chronic infections that you list are airborne and can pass to animals with prolonged exposure.  Birds, cats, dogs, hamsters, and other pets have come down with illness when their owners were sick with chronic infections.  In some cases, these infections can be very serious, and they can result in fatal infections in some animals that are more susceptible than humans to the pathogenic effects of the microorganism.  Therefore, we recommend our Veterinary Testing for pets.  Often pets respond similar to humans to the same type of therapy recommended for treatment of chronic infections; however, the dose of antibiotic or other drug will be different in other species, so you need to consult with your veterinarian for the proper dose and regimen for treatment.

Prof. Garth Nicolson

QUESTION:

My doctor criticized your test because it "isn't a culture".  Is this true?  What actually goes on in your samples during the two weeks you allow before reading the results?

RESPONSE:

CULTURING SOME INFECTIOUS AGENTS, SUCH AS MYCOPLASMAS THAT ARE PATHOGENIC TO HUMANS, IS EXTREMELY DIFFICULT, BECAUSE THEY GROW VERY POORLY IN DEFINED MEDIA IN BACTERIAL CULTURES. THEY ARE INTRACELLULAR PATHOGENS THAT USUALLY GROW INSIDE MAMMALIAN CELLS NOT IN CULTURE.  THE TIME REQUIRED TO GET TEST RESULTS BACK IS USALLY DUE TO THE CONFORMATION OF THE PCR PRODUCT BY SOUTHERN BACK-HYBRIDIZATION OR PRODUCT SEQUENCING. WE ARE THE ONLY LAB THAT DOES THE CONFORMATION OF THE PCR PRODUCT ON EACH AND EVERY PATIENT.

QUESTION:

Can oxygen be used to treat chronic conditions like CFS, FMS and Gulf War Illness?

RESPONSE:

Yes, oxygen, and expecially hyperbaric oxygen (HBOT, oxygen under pressure, usually in a chamber), has been used to treat chronic illnesses.  At one of our affiliated clinics, Molecular Hyperbaric Medicine (www.o2med.com), we are examining the use of HBOT to treat ME/CFS, FMS and GWI in IRB-approved clinical trials.  Often these illnesses have associated chronic, anaerobic infections that should respond to oxygen therapy.  The oxygen therapy will be given along with antibiotics, and there is some evidence in the medical literature that combining antibiotic therapy with HBOT will yield a better result than antibiotics or HBOT alone.

QUESTION:

My husband and I are planning a trip to the Middle East this year. Will this cause me problems [with my chronic bacterial infection]?

RESPONSE:

AIR TRAVEL OVER LONG DISTANCES CAN BE A PROBLEM IF YOU HAVE CHRONIC INFECTIONS.  IF YOU HAVE A PROBLEM AT LOW OXYGEN PRESSURE, SUCH AS HIGH ELEVATIONS, THEN AIR TRAVEL OVER LONG DISTANCES FOR MANY HOURS SHOULD BE AVOIDED, IF POSSIBLE, BECAUSE YOU MAY RELAPSE WITHIN A FEW DAYS AFTER YOUR ARRIVAL.  THE POSSIBLE REASON FOR THIS IS THAT INFECTIONS, SUCH AS MYCOPLASMAL INFECTIONS, ARE BORDERLINE ANAEROBIC INFECTIONS THAT GROW BETTER UNDER LOW OXYGEN PRESSURES, SUCH AS FOUND AT HIGH ALTITUDE OR WHEN FLYING IN COMMERCIAL AIRCRAFT.

Prof. Garth Nicolson

 QUESTION:

Isn't there a danger for me with my chronic illness to have vaccines? Can I have the different vaccinations to travel overseas? hepatitis, polio, etc...

RESPONSE:

THE QUESTION OF APPROPRIATE USE OF COMMERCIAL VACCINES IS A DIFFICULT ONE TO ANSWER.  MOST VACCINES ARE COMPLETELY SAFE; HOWEVER, SOME MIGHT BE CONTAMINATED WITH MICROORGANISMS. ALTHOUGH THIS IS PROBABLY RARE, YOU SHOULD NOT TAKE THE CHANCE OF ADDITIONAL INFECTIONS.  IN ONE PUBLISHED STUDY, ~6% OF COMMERCIAL VACCINES WERE CONTAMINATED WITH MYCOPLASMAS, AND ALTHOUGH IN HEALTHY INDIVIDUALS THIS MIGHT NOT BE A PROBLEM, IN IMMUNE COMPROMISED INDIVIDUALS THIS COULD BE A PROBLEM.

QUESTION:

The severity of such infections seems to be related to hormone levels, and  womens' CFS in particular seems to be hormonally related.

RESPONSE:

THE GROWTH OF CHRONIC INFECTIONS, SUCH AS MYCOPLASMA, CHLAMYDIA, ETC. SEEMS TO BE RELATED TO HORMONAL ENVIRONMENT.  CHANGES ARE SEEN DURING MENSTRAL CYCLE, PREGNANCY, ETC. THAT ARE PROBABLY RELATED TO HORMONE LEVELS.  MICROORGANISMS LIKE MYCOPLASMAS ARE VERY SENSITIVE TO STEROIDS, AND STEROID LEVELS MAY BE QUITE IMPORTANT IN REGULATING THEIR GROWTH PROPERTIES.

Prof. Garth Nicolson

QUESTION:

 I was diagnosed with CFIDS 3 years ago.  I began a course of Doxycycline (200 mg per day, all at once) 10 months ago and have had improvement, with the occasional  short relapse. I am into 10 days of a very serious relapse and wonder if it could be connected to beginning  some hormone replacement for osteoporosis.  My relapse began about 8 days after beginning 180 CPD Progesterone 1 ml twice daily (in a cream). Do you have any information on the use of hormone replacement for those recovering from mycoplasma infection (namely pneumonia and hominis)?

RESPONSE:

AS MENTIONED ABOVE, HORMONAL LEVELS MAY BE IMPORTANT IN STIMULATING THE GROWTH OF CERTAIN CHRONIC INTRACELLULAR BACTERIA.  ALTHOUGH IN YOUR CASE THE EXACT REASON FOR RELAPSE IS PROBABLY UNKNOWN, STEROID HORMONES COULD CAUSE A PROBLEM.

QUESTION:

My husband has not usually suffered from chronic headache as one of his Gulf War [Illness] complaints. However, when he had a relapse during July of last year (due, I believe to the air quality here in Utah with the extensive forest fires) he also developed a headache as well. It has been almost persistent since August of 2000. My husband describes the headache as a pressure in his head; he says it feels as if his head is solid. He feels actual pain when he shakes his head or at the end of an extremely active day. The pressure does not go away, it simply lessens or increases in degree of discomfort. Thus far, Robert has undergone treatment for allergies and various bacterial infections. He has been treated for migraines. We have checked for sinus infections, brain tumors, changes in eyesight, toothache, and lower back problems. We have tried treating this as a stress headache--nothing seems to affect the headache. Robert has another doctor's appointment today in which the next plan of action, as of the last appointment, was to be a headache specialist. We have only been able to conclude that perhaps this is somehow related to his other symptoms and is manifesting itself in a new way which we are at odds to alleviate or diagnose. Based on what I have told you, do you have any further

information?

RESPONSE:

One possibility is that he has a vasculitis or inflammation of the vascular system caused by an infection(s) in the vascular endothelial cells. In the brain this can cause disruption of the blood brain barrier and leakage, creating pressure in the brain that can create severe pain.  It is very important that he be tested for mycoplasmal infections, in particular, M. fermentans and M. genitalium infections, among other bacterial (Chlamydia species) and viral (HHV-6, CMV) infections.  Consult our website, www.immed.org for further information on diagnosis and treatment.

Prof. Garth Nicolson

QUESTION:

My degenerative neck and spine problem gets worse every year--also in ‘95 they said I had cryloglobunemia--Does mycoplasma have anything do that?—I can’t tolerate cold and I have no health insurance--but these doctors seem to treat mycoplasma as a minor thing--but [it’s the] only thing they found in blood besides high crylogobulin? My x-rays show degenerative disc and or vertebrae in spine and odd curve in spine --any ideas on what I can do--especially with stiff neck and spine problem.

RESPONSE:

It seems like you could have a chronic mycoplasmal or other bacterial or viral infection, usually found in about 50% of chronic joint disease patients, such as Rheumatoid Arthritis.  Patients with these infections often have joint and back pain.  If you had a positive test for a systemic mycoplasmal or other bacterial infection, such as Chlamydia species then we feel that it should be treated, just like any systemic bacterial infection.

QUESTION:

I have a chronic urinary infection, and my doctors can’t seem to diagnose the source?  On some antibiotics my condition does seem to get better, but the infection comes back eventually. Now I am developing other symptoms, including joint and muscle pain, bowel problems, etc. What do you think is wrong with me?

RESPONSE:

Only your physician can diagnose your exact problem; however, you may be suffering from an infection(s) that is difficult to find with conventional urine analyses that are used for rapidly growing microorganisms. Patients with chronic signs and symptoms that develop from an initial bladder or urinary tract infection often have infections like Mycoplasma genitalium or Ureaplasma urealyticum.  These mycoplasmas can be difficult to diagnose, but they can be found with molecular tests offered by our certified reference diagnostic laboratory, International Molecular Diagnostics, Inc. (www.imd-lab.com).  If you have such an infection, it should be treated.

QUESTION:

I believe I've wrongly been diagnosed with Fibromyalgia [Syndrome], and am interested in knowing how I would have testing done at your facility.

RESPONSE:

THE DIAGNOSIS OF FIBROMYALGIA IS BASED PRIMARILY ON PATIENT SIGNS AND SYMPTOMS, SUCH AS PAINFUL MUSCLE AREAS (OFTEN CALLED TRIGGER POINTS), NOT LABORATORY TESTS.  OUR AFFILIATED CERTIFIED REFERENCE DIAGNOSTIC LABORATORY, INTERNATIONAL MOLECULAR DIAGNOSTICS, INC., USES MOLECULAR CLINICAL LABORATORY TESTS TO IDENTIFY POSSIBLE UNDERLYING CAUSES FOR FIBROMYALGIA SYNDROME MORBIDITY.  FOR EXAMPLE, WE HAVE FOUND MYCOPLASMAL INFECTIONS IN ~60% OF FMS PATIENTS.  SEE WWW.IMMED.ORG FOR MORE DETAILS.

PROF. GARTH NICOLSON

QUESTION:

Can you help me? I have a support group for women harmed by saline implants.  I myself have been a victim.   I have been explanted for almost 3 years now.  I have improved in most areas--almost all of my symptoms are gone, except for one devastation symptom.  It is my brain function.  I have had many periods recently where I felt good, but I still suffer from exacerbations where I feel like my head is stuffed with cotton balls, and I am going through a deepening depression right now because of it.  I am highly motivated to get better, but after 3 years, I wonder if I am fighting a losing battle.

I have done almost all of the natural therapies, including ozone therapy (I have a cold plasma generator) and feel that they have helped me a lot.  However, I guess I need to know for sure if I am fighting a mycoplasma infection, and how I can get treated for this properly.  My doctor  has analyzed my saline implants, and has written "Both implants were grossly contaminated with at least one class of micro-organisms (mycobacteria).  Having such implants in that condition would be approximately equivalent to bearing two large abscesses for more than a year."

Have you had success in healing women who have been harmed by saline implants?

Would you be willing to help direct me as to what path I should follow to finally resolve this health issue?

RESPONSE:

We have found that many implant victims that have chronic illness even after removal of their implants usually have chronic infections, such as Mycoplasma, Chlamydia, and various other chronic bacterial and viral (such as Herpes Viruses, etc.) infections.  Once these infections are identified, patients can be treated.  Your partial responses to ozone therapy support the notion that anaerobic infections may be involved in your illness. If you are interested, please consult our website, www.immed.org for more information.

Prof. Garth Nicolson

QUESTION:

Is Azythromycin used for 6 months straight without other antibiotic rotation and then followed by further Azythromycin treatments, or are other antibiotics used in the rotation of treatment of Chlamydia?

RESPONSE:

THE IMPORTANT POINT IS THAT ANTIBIOTICS ARE USED CONTINUOUSLY FOR AT LEAST 6 MONTHS BEFORE THE CYCLING OF ANTIBIOTICS. THE TYPE OF ANTIBIOTIC CAN BE IMPORTANT, AND WE HAVE SEVERAL RECOMENDATIONS, INCLUDING AZITHROMYCIN, DOXYCLCLINE, ETC. [SEE IMMED.ORG, TREATMENT CONSIDERATIONS].  IT IS IMPORTANT THAT AN APPROPRIATE ANTIBIOTIC IS USED AS INDICATED BY YOUR BLOOD TESTS.  YOUR PHYSICIAN SHOULD BE ABLE TO HELP YOU WITH CHOSING THE APPROPRIATE ANTIBIOTIC OR COMBINATION OF ANTIBIOTICS AND THE MOST USEFUL REGIMEN FOR THERAPY.

QUESTION:

How soon should some improvement be felt after beginning treatment, and if none is experienced, how long before treatment should be discontinued?

RESPONSE:

WE SUGGEST AT LEAST 12 WEEKS TO BEGIN WITH.  IF THERE IS NO IMPROVEMENT, THEN YOUR PHYSICIAN SHOULD CONSIDER CHANGING THE TYPE OF ANTIBIOTIC.  ANTIBIOTICS ALONE WITHOUT NUTRITIONAL AND IMMUNE SUPPORT IS NOT ADVISED.

QUESTION:

Some doctors have reported encouraging results using intravenous hydrogen peroxide as a treatment for chronic fatigue.  Have you heard of this and could it assist in Chlamydia treatment?

RESPONSE:

H202 HAS BEEN USED I.V. TO TREAT CHRONIC INFECTIONS SUCH AS CHLAMYDIA, MYCOPLASMA, ETC.   SOME PATIENTS REACT VERY STRONGLY TO I.V. H202, SO IT MUST BE USED INITIALLY AT A VERY, VERY LOW DOSE AND BUILT UP SLOWLY.  MANY PHYSICIANS USE I.V. OZONE-TREATED SALINE INSTEAD, BECAUSE IT APPEARS TO BE SAFER [FEWER ADVERSE REACTIONS DURING I.V. THERAPY].  DISCUSS WITH YOUR PHYSICIAN WHICH APPROACH MIGHT BE BEST FOR YOU.

QUESTION:

I was diagnosed with mycoplasma pneumonia about twelve years ago.  My symptoms included fever, vomiting, diarrhea, and vaginal sores.  Ten years later, I had the same symptoms, but a blood test was never done.  Then, I got the same thing two years later.  Does this sound like it could be a mycoplasma also?  None of the doctors could diagnose it.

RESPONSE:

YES, IT COULD BE A MYCOPLASMAL INFECTION.  SINCE MOST PHYSICIANS DO NOT TREAT MYCOPLASMAL INFECTIONS PROPERLY, THEY OFTEN RECURR. SOMETIMES THEY CYCLE, SO YOUR SYMPTOMS CAN GET BETTER, BUT THEN WORSE LATER ON.  ADDITIONAL INFORMATION IS ON OUR WEBSITE, WWW.IMMED.ORG

PROF. GARTH NICOLSON

QUESTION:

I have had ankylosing spondylitis for years, and I have not had any luck in getting this treated. Can you help me?

RESPONSE:

WE HAVE FOUND THAT MANY IF NOT MOST PATIENTS WITH ANKYLOSING SPONDYLITIS HAVE CHRONIC INFECTIONS THAT MAY UNDERLY THEIR CONDITION OR EVEN BE A CAUSE OF IT. AFTER TESTING FOR CHRONIC INFECTIONS, MANY AS PATIENTS SLOWLY RECOVER ON THE APPROPRIATE ANTIBIOTICS AND IMMUNE AND NUTRITIONAL SUPPORT. SEE OUR WEBSITE FOR FURTHER DETAILS ABOUT TESTING AND TREATMENT.

PROF. GARTH NICOLSON

QUESTION:

I have a 67 year-old patient with ALS (spinal progressive muscular type), who I placed on artificial ventilation at home with good physical condition. First cardinal sign of this patient was chronic respiratory failure due to weakening of respiratory muscle, a relatively rare symptom as the onset of ALS.  I am interested in your theory and your trial of treatment with macrolides. I would like to know if this patient is also infected with mycoplasma and/or enterovirus and if so, I would like to treat him with macrolides. Please let me know if I can send the blood sample to your laboratory and let it be analyzed. Although I am pulmonologist, my colleague, a neurologist, also has some patients with ALS and is interested in your therapy.

RESPONSE:

IN COLLABORATION WITH DRS. DARRYL SEE AND FERRE AKBARPOUR OF THE IMMUNE INSTITUTE, WE HAVE FOUND THAT >85% OF ALS PATIENTS HAVE AT LEAST TWO CHRONIC INFECTIONS, A SYSTEMIC MYCOPLASMAL INFECTION, AND A CNS INFECTION OF ECHO-7 RELATED ENTEROVIRUS. THESE TWO INFECTIONS MAY SYNGERIZE IN SOME WAY IMPORTANT IN THE PATHOGENESIS OF ALS. TREATMENT USING THE APPROPRIATE I.V. ANTIBIOTICS AND I.V. ANTIVIRALS, PLUS IMMUNE ENHANCEMENT AND NUTRITIONAL AND NEURONAL SUPPORT, HAS RESULTED IN ARRESTING OR SLOWING OF ALS PROGRESSION, AND IN SOME PATIENTS A PARTIAL REVERSAL OF ALS SIGNS AND SYMPTOMS. THIS PROTOCOL IS AN IRB-APPROVED EXPERIMENTAL TREATMENT PROTOCOL BASED ON DIAGNOSIS OF CHRONIC INFECTIONS IN ALS PATIENTS.  FURTHER INFORMATION CAN BE OBTAINED BY CONTACTING ME OR DR. DARRYL SEE DIRECTLY.

PROF. NICOLSON

QUESTION:

I have neurological symptoms, and I tested positive for Mycoplasma and Chlamydia infections.  What is the difference between the various antibiotics, and which one (or ones) do I use?

RESPONSE:

THE VARIOUS ANTIBIOTICS THAT WE RECOMMEND FOR CHRONIC BACTERIAL INFECTIONS HAVE DIFFERENT MECHNANISMS OF ACTION, DIFFERENT EFFECTS ON DIFFERENT BACTERIA AND DIFFERENT ABILITIES TO PENETRATE INTO TISSUES. IN THE CASE OF THE DUAL INFECTION THAT YOU HAVE, I WOULD SUGGEST TO YOUR PHYSICIAN THAT GOOD TISSUE PENETRATION IS IMPORTANT FOR THESE BACTERIA, SINCE THEY HIDE INSIDE CELLS. ALSO, YOU WILL NEED ONE (OR MORE) ANTIBIOTICS THAT CAN SUPPRESS THESE PARTICULAR BACTERIA. ONE SUGGESTION IS DOXYCYCLINE, WHICH HAS GOOD ACTIVITY AGAINST THESE MICROORGANISMS AND GOOD TISSUE PENETRATION. THIS CAN BE FOLLOWED BY OTHER ANTIBIOTICS OR COMBINATIONS OF ANTIBIOITCS, IMMUNE ENHANCEMENT, NUTRITIONAL SUPPORT, ETC.

QUESTION:

I have been diagnosed with Fibromyalgia Syndrome, Chronic Fatigue Syndrome, Meniers Disease, depression, anxiety and other problems.  I am not getting much support from the VA.  Even though I am 50 years old, they say that I look too young to be ill.

RESPONSE:

ONE OF THE MOST OFTEN STATED GENERALIZATIONS ABOUT FMS, CFS AND OTHER CHRONIC FATIGUING ILLNESSES IS THAT PATIENTS DO NOT LOOK AS SICK AS THEY FEEL, AND THEY OFTEN DON’T APPEAR AS SICK LOOKING AS OTHER PATIENTS. THIS HAS RESULTED IN RANK DESCRIMINATION AND MISDIAGNOSES AMONG CHRONIC ILLNESS PATIENTS WHO HAVE REAL MEDICAL-ORGANIC PROBLEMS NOT PSYCHIATRIC ILLNESSES. WE HAVE PIONEERED THE DEVELOPMENT OF MOLECULAR TESTS FOR CHRONIC INFECTIONS IN THESE ILLNESSES, RESULTING IN THERAPIES THAT CAN HELP PATIENTS EVENTUALLY RECOVER THEIR HEALTH.  FURTHER INFORMATION CAN BE FOUND ON OUR WEBSITE, WWW.IMMED.ORG.

Prof. Garth Nicolson

QUESTION:

Dear Prof. Nicolson, There may be several parallel paths by which mycoplasmas contribute to ALS. Here is one possibility. It's a bit lengthy so I will write an abstract.  There is a link between mycoplasmas and a known aspect of ALS pathology.  Mycoplasmas need and use cholesterol.  But oligodendrocytes require cholesterol to synthesize neurosteroids. Neurosteroids have neuroprotective properties such as reducing neuronal responsiveness to glutamate.  If the mycoplasma population is large enough, they may use so much cholesterol that they drive down neurosteroid synthesis.  Low levels of neurosteroids may lead to CNS disfunction and damage.

RESPONSE:

I WAS AWARE OF THE STEROID-STEALING PROPERTIES OF MYCOPLASMAS. THIS MAY BE HOW THEY ALSO MAKE MITOCHONDRIA LEAKY--BY STEALING THE LIPIDS SUCH AS CHOLESTEROL THAT ARE IMPORTANT IN MITOCHONDRIAL MEMBRANE INTEGRATY. WHEN

MITOCHONDRIA ARE LEAKY, THEY CAN'T GENERATE THE ENERGY NECESSARY FOR CELL

FUNCTION, AND NERVES ARE THE MOST SENSTIVE CELL TYPE TO ENERGY DEPRAVATION.

I LIKE THE NEUROSTEROID-GLUTAMATE IDEA. OF COURSE, MYCOPLASMAS ALSO DO MANY OTHER BAD THINGS TO CELLS, AND IN THE CASE OF ALS ONE OF THOSE MAY BE INHIBITION OF NEUROSTEROID PRODUCTION OR LOSS OF NEUROSTEROIDS.

PROF. NICOLSON

QUESTION:

My physician placed me on 1,000 mg/day Ciprofloxacin to treat my mycoplasma infection. Is this high enough dose? I was on a higher dose, but my symptoms became worse.

RESPONSE:

IT MAY NOT BE A HIGH ENOUGH DOSE.  OUR USUAL RECOMMENDATION IS 1,500 MG/DAY CIPRO. THE RATIONALE FOR THIS IS THAT AT THIS DOSE MORE DRUG WILL PENETRATE INTO TISSUES AND CELLS, AND THIS IS WHERE IT IS NEEDED. THE REASON THAT YOUR SIGNS AND SYMPTOMS MAY HAVE BECOME GRADUALLY WORSE COULD HAVE BEEN DUE TO HERXHEIMER REACTIONS OR DIE-OFF REACTIONS THAT CAUSE WORSING OF SIGNS AND SYMPTOMS FOR DAYS TO WEEKS. THIS USUALLY RESOLVES GRADUALLY WITH FURTHER TREATMENT.  IF IT DOESN’T, THEN YOUR PHYSICIAN SHOULD PROBABLY CONSIDER ANOTHER ANTIBIOTIC.  IF YOU HAD AN IMMEDIATE ACUTE ADVERSE REACTION, THEN THIS ANTIBIOTIC IS PROBABLY NOT FOR YOU.  CONSULT WITH YOUR PHYSICAN.

 QUESTION:

How do we know if a patient is recovered enough on antibiotic therapy?  Is it purely subjective or should we have her blood tested after her year of antibiotic therapy.  If a patient’s blood is negative for the mycoplasma, does that indicate that the mycoplasma has been completely eliminated?

RESPONSE:

WE USUALLY CONSIDER THAT A NEGATIVE BLOOD TEST INDICATES THAT THE BLOOD

LEVELS ARE TOO LOW TO BE DETECTED BY THE PCR PROCEDURE WHICH, BY THE WAY, IS VERY, VERY SENSITIVE.  WHEN PATIENTS ARE ON ANTIBIOTICS, THEY GENERALLY TEST NEGATIVE

INDICATING THAT THE BLOOD LEVELS HAVE BEEN SUPPRESSED BY THE ANTIBIOTIC

TREATMENT TO VERY LOW OR UNDECTIBLE LEVELS.  AT THIS TIME WE CONSIDER PATIENTS ESSENTUALLY NONINFECTIVE, SINCE BLOOD LEVELS OF MICROORGANISM ARE RELATED TO THE LEVELS EXPELLED BY THE LUNGS.  IN SUPPORT OF THIS NOTION, WE HAVE NEVER HEARD OF PATIENTS ON ANTIBIOTIC THERAPY SPREADING THE INFECTION.  THUS IT IS PROBABLY UNLIKELY THAT PATIENTS ON ANTIBIOTICS ARE SPREADING THEIR INFECTION.  THE APPROPRIATE TIME OF TREATMENT CAN ONLY BE ESTIMATED BY YOUR PHYSICIAN BASED ON YOUR SIGNS AND SYMPTOMS WHEN YOU GO OFF THE ANTIBIOTIC.  PATIENTS THAT REQUIRE ADDITIONAL TREATMENT GENERALLY RELAPSE WITHIN A FEW WEEKS AFTER DISCONTINUING THERAPY.

QUESTION:

Dr. Nicolson:

Your research on Gulf War Illness helped my husband immensely two years ago.  He has had a relapse of very mild symptoms--mostly headache, back pain, and sleeplessness.  I am writing to inquire if you have additional information I can pull off your site or elsewhere.

RESPONSE:

Your husband may have a residual infection of the same or different type, or his signs and symptoms could be due to other residual problems (chemical, environmental).  If he responds to the same or similar antibiotics and continues recovering, then his problem was likely a mild relapse.  However, he may additional problems that need to be properly diagnosed and treated.

QUESTION:

Is there a connection between Crohn’s Disease and other bowel diseases and mycoplasma infections?

RESPONSE:

We have found that patients with Chronic inflammatory Bowel Syndrome, Crohn’s Disease, Ulcerative Colitis, Chronic Esophagitis and other diseases often have Mycoplasma, Helicobacter (H. pylori) and other chronic infections.  Many physicians successfully treat such patients with antibiotics, strongly suggesting that their illness or at least their morbidity was due to the infection(s).

QUESTION:

We have a child diagnosed with Reiter's syndrome who has recurrent attacks.  He also has had sporadic episodes of diarrhea prior to increased urinary symptoms.  Blood and urine cultures are negative.  Would Chlamydia and Mycoplasma tests be beneficial in this case, and if so what is the collection and transfer procedure and more importantly what treatment is offered?

RESPONSE:

We have found that RS patients often have chronic infections that could be the cause of their illness, a cofactor in their illness or opportunistic infections that cause patient morbidity (sickness).  More information can be found on our website.  For testing your physician can call Client Services at International Molecular Diagnostics (714-799-7177, ext. 202), and obtain a test kit.  Treatment recommendations for your physician are on our website under Treatment Considerations.

QUESTION:

How does my physician get the testing kits that are used to ship the blood for testing?

RESPONSE:

Call Client Services at International Molecular Diagnostics (714-799-7177, ext. 202), and they will be pleased to send your or your physician a blood test kit containing a small Styrofoam

Box, vacuum tubes for blood and a chemical ice pack to keep them cold during overnight shipment.  Note that foreign shipments require shipment of frozen samples with dry-ice.  The reason for this is that foreign samples take longer to reach the lab.

QUESTION:

I have heard that rheumatoid arthritis may be caused by an infection, and it can be treated with antibiotics?

RESPONSE:

Rheumatoid Arthritis, Reiter’s Syndrome, Rheumatoid Spondylitis, and other rheumatic diseases show strong associations with chronic infections.  In about one-half of these diseases mycoplasmal and other infections have been found, and these patients do quite well on long-term antibiotics.  In fact, a large placebo-controlled clinical trial conducted by the NIH showed the benefits of the antibiotic minocycline in the treatment of certain rheumatic diseases, such as RA.  For more information go to the section on Autoimmune Illnesses on this website.  Additional information can be found from the Road Back Foundation  (www.roadback.org).

Prof. Nicolson

QUESTION:

Dear Dr. Nicolson:

I have reviewed a few of the articles re: treatment of M. fermantens, and would like to start treating one of my patients.  I would appreciate any suggestions you have for number of cycles, time between cycles and whether it is useful to use another antibiotic (i.e. Augmentin) between cycles. Thank you for your time and interest in CFIDS!

RESPONSE:

We generally recommend treatment for at least 6 months without a break using doxycycline (200 mg/day) or one or more of the other antibiotics (consult Treatment Considerations on our website).  After the 6 months treatment we usually recommed cycling--6 weeks on, 2 weeks off.  If necessary, the Augmentin is used in between the on-cycles to suppress secondary bacterial infections.  If the patient plateaus during the treatment, then we recommend switching to another antibiotic. The other recommendations are also important, such as diet, nutritional supplements, immune enhancement products, etc.  Many patients have yeast infections during the treatment that must be treated.

Prof. Nicolson

QUESTION:

I have been diagnosed with Mycoplasma, and I am currently in the VA Clinical Trial with doxcycline vs. placebo.   I believe my fianc‚e' and child may now have the same infection, (my fianc‚e' has been diagnosed with Chronic Fatigue Syndrome).  My fianc‚e' explained to her physician the situation regarding me testing postive for mycoplasma....he had absolutely no idea what to do or how to test for it. I would sincerely appreciate any information that you can provide for me to educate this physician.

RESPONSE:

Information on Mycoplasma and other chronic airborne infections that are involved in Gulf War Illnesses and Chronic Fatigue Syndrome and how to be tested for these infections can be found on our website, www.immed.org, and that of our certified reference diagnostic laboratory, International Molecular Diagnostics, Inc., www.imd-lab.com.  A U.S. Senate study found that 77% of spouses and 65% of children born after the war now have illnesses similar to Gulf War Illness. Our findings indicate that when this occurs, the spouses and children usually have the same chronic infections as the sick veteran, and they should be treated using a similar treatment program to those we have published for Mycoplasma-positive Gulf War Illness.

QUESTION:

I happened upon your web site and found it quite enlightening. I have a question about the article on Mycoplasmal Infections in Chronic Illnesses. I have RA and have had it since 1984. if my RA is due to this type of infection, how would the treatment effect me.

RESPONSE:

We have published in the British peer-reviewed medical journal Rheumatology that a very high percentage of Rheumatoid Arthritis patients have mycoplasmal infections.  This was also seen earlier by Dr. Harold Clark and others.  Such infections can be treated with long-term minocycline or other antibiotics, immune enhancement, nutritional supplements and other support (see Treatment Considerations on this website and also Road Back Foundation  (www.roadback.org).

Prof. Nicolson

QUESTION:

Dear Dr. Nicolson:

Is part of the reason that we are in such trouble with mycoplasma because they have the ability to adapt to antibiotics by incorporating the antibiotic into the DNA structure?

Thanks for your reply.

RESPONSE:

Mycoplasmas are just very slow-growing, especially the intracellular pathogenic variety, and not as metabolically active as the fast-growing bacteria and are thus less susceptible to antibiotics and antimetabolites of any kind.  However, if these infections are inappropriately treated (too brief treatment or too low concentration of antibiotic), then resistant strains could arise.

QUESTION:

I am especially interested in those with Ankylosing Spondylitis who have used the antibiotic drugs over a long period of time. I know antibiotics will help me greatly as I have experimented with them for one thirty-day course.  My most pressing question is simply how long will they work before the bugs mutate into resistant strains? Also, what strategies can be used to minimize the chances of this happening. I feel that I only have one chance at undertaking this therapy, and I don't want to screw it up by not completing detailed research from multiple sources.  Any answers, information, or contacts would be greatly appreciated!

RESPONSE:

To my knowledge the recovery of patients with chronic infections on antibiotics was gradual and sometimes cyclic, similar to what we have seen with other rheumatic illness patients. I don't think that resistant strains will emerge while on antibiotics, unless the dose is too low or the treatment not long enough. The problem is that many physicians stop and then restart antibiotics for no apparent reason, or they use too low dosages to be effective.  These conditions can select for resistant substrains.

Prof. Nicolson

QUESTION:

Dr. Nicolson-

I am  *very* grateful for the work you are doing, but I'm wondering why you are not talking more about researching Lyme Disease.  I'm sure you are well aware that so many of the symptoms of Lyme are similar to the other chronic diseases you have identified.  Lyme disease is the fastest growing infectious disease besides AIDS in the USA, and perhaps in Europe as well.   I assume you have heard the various suspicions surrounding the origins and spread of Lyme in this country.   I have had friends who have been positively diagnosed with Lyme and then  diagnosed by you with mycoplasma.  I am confused about the connection  between the two bacteria, if there is any.  There is so much disinformation about Lyme disease being fed the American  people.  There is such an effort to cover-up the true nature of this terrible disease, and not to find a cure for it.  Doctors licenses are being revoked for treating a disabling disease of the order of syphilis.  Why?  In two recent studies, a very high percentage of people previously diagnosed with Fibromyalgia Syndrome were found to be positive for Lyme disease.   And yet, doctors are made to feel more comfortable diagnosing people with a 'syndrome' like Fibromyalgia with no known cause, than with Lyme Disease  which has a definite cause.   Considering all the suffering, disability, and even death caused by Lyme Disease, I am wondering if you are interested in the fight against it? I am curious why it is not even mentioned on your website?  I thank you for your time and consideration.  I know you are doing  important and difficult work for which you have sacrificed much.

RESPONSE:

WE ARE TRYING VERY HARD TO DO ALL THAT WE CAN ON LYME DISEASE AND OTHER CHRONIC INFECTIONS. WE NOW OFFER PCR TESTING AND ANTIBIODY TESTING FOR LYME DISEASE MICROORGANISMS.  WE ARE COUNCILING PATIENTS WITH THESE AND OTHER INFECTIONS ON TREATMENT, DIET, SUPPLEMENTS, ETC.  AS YOU CAN SEE FROM THE PCR TESTS THAT WE OFFER (WE ALSO OFFER SEVERAL ANTIBODY-BASED LYME DISEASES TESTS AS WELL), WE ARE CONSIDERING LYME IN THE CONTEXT OF ME/CFS. WE HAVE FOUND THAT MANY IF NOT MOST LYME DISEASE PATIENTS HAVE BOTH BORRELIA AND MYCOPLASMA INFECTIONS.  THESE COULD OCCUR AS A COINFECTION OR THEY COULD OCCUR AT DIFFERENT TIMES BUT OUR DATA SUGGESTS A COINFECTION WITH OTHER BACTERIA AS WELL.  THEREFORE, WE RECOMMEND TESTING FOR BOTH BORRELIA AND MYCOPLASMA INFECTIONS (SEE CLINICAL TESTING).  OUR NEWEST UPDATE ON OUR WEBSITE WILL CONTAIN  MORE INFORMATION ABOUT BORRELIA INFECTIONS.

PROF. GARTH NICOLSON

QUESTION:

Are there any lab tests other than those on your list that should be ordered specifically for Crohn's?

RESPONSE:

The standard list of bacteria and viruses for ME/CFS patients plus H. pylori.

QUESTION:

I was on doxycycline from April—Nov, then my doctor switched me to minocycline 100mg 2x/d (this seems to work a little better).  I have seen only a small additional improvement in the myco symptoms.  Do you think a pulsed regimen of some kind (one day on, one day off, or any other variation) would work better than daily dosing?

THERE ARE DIFFERENT IDEAS ON THIS, AND SOME PHYSICIANS LIKE THE EVERY OTHER DAY APPROACH SUGGESTED BY THE ROAD BACK FOUNDATION. THE PROBLEM THAT WE HAVE SEEN IS THAT MANY PATIENTS SEE THEIR SIGNS AND SYMPTOMS BECOMING WORSE ON THE "OFF" DAYS, WHICH IS WHY WE HAVE ALWAYS RECOMMENDED DAILY DOSING.  IT MAY DEPEND COMPLETELY ON THE INDIVIDUAL WHETHER THEY DO BETTER ON DAILY OR BI-DAILY DOSING.

QUESTION:

Are there any mycoplasmas other than the ones your IMD Lab PCR'd me for (M. fermentans, M. pneumoniae, M. penetrans, and M. hominis) that you believe to be clincially significant, insofar as they would require a different, additional antibiotic to knock them out, that you think I should get tested for? 

RESPONSE:

TWO OTHERS THAT ARE IMPORTANT IF YOU HAVE GU SIGNS ARE M. GENITALIUM AND U. UREALYTICUM.  OUR CERTIFIED REFERENCE LAB, INTERNATIONAL MOLECULAR DIAGNOSTICS, INC. (WWW.IMD-LAB.COM) DOES PCR AND ANTIBODY TESTING FOR THESE MYCOPLASMA SPECIES.

QUESTION:

Are there specific stages of CFS?

RESPONSE:

MOST PHYSICIANS CANNOT AGREE IF THEIR ARE SPECIFIC STAGES IN CFS/ME, BUT THERE

ARE CERTAINLY DIFFERENT RATES OF PROGRESSION OF THE DISEASE, AND PATIENTS HAVE DIFFERING (BUT USUALLY OVERLAPPING) SIGNS AND SYMPTOMS.  SINCE CFS/ME MAY BE TRIGGERED BY DIFFERENT EVENTS, SUCH AS CHEMICAL EXPOSURE, CHRONIC INFECTIONS, ETC., THERE MAY BE SUBSETS OF PATIENTS WITH DIFFERENT SPECIFIC PROBLEMS, ALTHOUGH THEY MAY DISPLAY OVERLAPPING SIGNS AND SYMPTOMS.

QUESTION:

What kind of treatment is available for CFS patients?

RESPONSE:

BASICALLY IT DEPENDS ON WHAT EXPOSURES OR ABNORMALITIES HAVE BEEN FOUND IN THE PATIENT.  FOR EXAMPLE, IF METABOLIC ABNORMALITIES, SUCH AS IN AMINO ACIDS, VITAMINS,

ETC. ARE FOUND, CERTAIN SUPPLEMENTS CAN HELP. FOR EXAMPLE, CHANGES IN PHOSPHATE, AMINO ACIDS, VITAMINS, MINERALS, ETC. CAN BE CORRECTED.  IF CHRONIC INFECTIONS ARE FOUND, THEN SPECIFIC TREATMENTS ARE USEFUL, SUCH AS ANTIBIOTICS OR ANTIVIRALS.  OFTEN ME/CFS PATIENTS HAVE MULTIPLE PROBLEMS THAT CAN BE ADDRESSED BY VARIOUS TREATMENTS AND DRUGS, ALTHOUGH SUCH TREATMENTS MAY ONLY BE TREATING THE SYMPTOMS AND NOT THE UNDERLYING CAUSES OF THE ILLNESS.  WE STILL DO NOT KNOW WHAT TRIGGERS OR CAUSES THESE CLINICAL CONDITIONS.

QUESTION:

O.K. I have heard that over 50% Ovarian Cancer patients have mycoplasmal infections - but how does that compare to general population infection rates, and to patients with other types of cancer?

RESPONSE:

We have found that many cancer patients have chronic infections, and in particular, mycoplasmal infections.  In laboratory studies such infections increased the rates of progression of tumors and increased their likelihood of metastasizing.

QUESTION:

I have Lupus (SLE), and I heard that this autoimmune disease may have an infectious cause?  Can this be treated?

RESPONSE:

We have found that many Lupus patients have chronic infections, and in particular, Mycoplasmal infections are commonly found in these patients.  Lupus patients with positive tests for mycoplasmas have been successfully treated with antibiotics plus nutritional and immune support.  Whether Lupus (SLE) is actually caused by such infections, or whether they are a cofactor or simply an opportunistic infection remains to be proven, but most patients that have these infections benefit from their therapy and many recover.

QUESTION:

What are the incident rates of mycoplasmal infections in the normal population?  Have you ever found multiple infections in normal people?  Have these infections been found in cancer patients?

RESPONSE:

Infections like M. fermentans are found in ~2% of the nonsymptomatic population, but these

nonsymptomatic subjects do not have multiple mycoplasmal infections. In several studies by several laboratories the prevalence of single mycoplasmal infections in normal subjects varies from a few percent to over 12% in some studies.  However, I know of no study where multiple mycoplasmal infections have been found in >1% of nonsymptomatic subjects.  In symptomatic patients, such as FMS or CFS/ME patients, we usually find multiple mycoplasmal infections in a majority of patients. 

The rate of mycoplasmal infections in cancer patients varies from very high in lymphoma and gastric CA (majority of patients) to about one-half (breast and ovarian) of patients to low in benign lesions.  However, this has not been extensively researched in many different types of cancer.  In one study on ovarian CA, the presence of mycoplasmal infections was related to rapid progression and early death.

Prof. Garth Nicolson

QUESTION:

Dear Dr. Nicolson:

Is there evidence that mycoplasma "feed on" the amino acid arginine?  If so, should any form of arginine be avoided in the diet of someone suspected of having the mycoplasma infection? I will have blood drawn to send to your lab tomorrow, and I also sent you the survey that I took from your web sight in yesterday's mail.  Thank you for your reply.

RESPONSE:

Pathogenic mycoplasmas feed on several types of cellular metabolites, including various lipids, amino acids, sugars, etc.  They have very little synthetic capacity of their own for these molecules, so they "steal" what they need from host cells.

QUESTION:

I'm twenty six years old and have had CFS for the past four years. I recently came across your research on the internet and brought it to the attention of my primary care doctor who is ordering  PCR tests for mycoplasma and chlamydia infections. I have a couple of concerns. First, a couple of weeks ago  I began taking the supplement NADH. I was wondering if this could affect the test in anyway and whether I should discontinue taking it until after the test.  Second, in the event of a negative result (since a false negative result is possible), what recourse would I have in terms of pursuing antibiotic treatment and testing for viruses such as HHV6? My doctor has said he will not prescribe the antibiotics without diagnostic evidence.  However, according to your studies some patients who have tested negative have still benefited from the treatment.  I am just concerned that I might be denied the one viable treatment that I have come across since I became ill.

RESPONSE:

Supplements that do not stimulate the immune system or have any direct or indirect effect on the infections should not affect the Forensic PCR tests.  It’s certainly true that a small percentage of patients appear to cycle in their blood levels of micoorganisms like Mycoplasma, Chlamydia, etc.  These patients can show positive tests at one time and negative tests at another.  A possible reason for this is that we have to use blood for the source for the testing, and almost all of the infection(s) are in tissue cells not in blood.  Only a very, very small amount of the infection is released into the blood where it is picked up by the white blood cells, but this is our source for testing.  Thankfully, this is not the usual situation, and most patients who have these infections will test positive.

In some cases patients that tested negative for certain bacterial tests did respond to antibiotics.  A possible reason for this is that we did not test for the appropriate species of infection that is present.  For example, our testing laboratory, IMD, offers a panel of the four most commonly found mycoplasmas in chronic illness patients, but these aren’t the only pathogenic  (capable of causing sickness in humans) species found in chronically ill patients.  Unfortunately, we can’t test for all possible species of bacteria or all possible types of viruses.  We try to test for the most likely infections, but there could be others that are causing patient morbidity.

Prof. Nicolson

QUESTION:

I have heard that colloidal silver is effective against chronic infections of the type that you study.  There are certainly a number of sources of this drug, and they all make quite fantastic claims.  Are any of these claims backed by solid research?

RESPONSE:

Unfortunately, most of the claims made for colloidal silver are just that—claims.  There are very few data in the literature supporting the many claims that manufacturers make for this product.  From our work and other studies most CFS/ME or FMS patients show little benefit from colloidal silver.  Perhaps this is because most of these patients have intracellular bacterial infections, and the colloidal silver doesn't penetrate deep into tissues like antibiotics.  Also, some patients who have taken colloidal silver long-term now have problems due to concentration of the silver in skin, etc. (not our work, but relayed to me by several physicians who have seen the problem).  There also seems to be a wide range of colloidal silver products, and any results could well depend on the source, purity, particle size, freshness of the product and other considerations.

QUESTION:

My child has autism and ADHD.  I heard from a patient support group that  your organization has identified infections in these children and that some children have actually recovered from autism and ADHD.  How do I find out about having my children tested?

RESPONSE:

We have an ongoing clinical study on autism and ADHD at the Institute for Molecular Medicine.  As a part of this clinical study, we are testing symptomatic children for the presence of chronic infections.  In fact, many of the children in this study did test positive and were placed by their physicians on antibiotic therapy (note that the specific recommendations for pediatric use of antibiotics differ from adult recommendations).  Although this is an ongoing study and the final results won’t be known for some time, we have seen dramatic responses in most of these children.  In addition to therapy for chronic bacterial, viral and fungal infections, these patients are receiving nutritional support and immune enhancement products (bioactive whey protein isolates)

QUESTION:

I would like your comments on CFS and eye problems. I have a constant, chronic inflammation in my eyes (mostly the left one), which itches and bothers me a lot.  Sometimes I also have a strong pain in both eyes, like if they were being squeezed.   Fortunately this symptom got better with time, and it is not so constant as before.  Sometimes my eyelids keep trembling (without control).

RESPONSE:

We have seen these signs and symptoms in mycoplasma-positive patients, and as I understand, you are a mycoplasma-positive CFS/ME patient.  In general, these signs/symptoms, along with eye pain and itching, vision acuity problems, light sensitivity, excess tearing, floaters in the visual field, eye redness and eyelid twitching resolved during long-term antibiotic treatment.  We presume that the mycoplasmal infections had something to do with these problems.

QUESTION:

I have Mycoplasma fermentans incognitus. I have been on antibiotic's for 5 months along with supplements, and I am getting much better. I suffered from fibromyalgia and chronic fatigue. I got my mercury dental fillings removed because that was a major problem for me. I had numbness, tingling and sensation of ants crawling on the left side of my body, that went away after removal. I had 4 metal crowns over amalgam and a root canal on the left side. I will be getting checked for cavitations in the New Year, as there is a good possibility I have those too.

I am still on Doxy. Is it okey to stay on it without switching to another one?  Your research has been very helpful to me. Keep up the good work and hopefully more Dr's will recognize this as a major problem in disease.

RESPONSE:

Dental mercury can be a problem in many patients because the mercury is slowly released into their system where it can react with proteins and enzymes.  At high concentrations mercury is poisonous.  Dental infections are another problem in chronic illness patients, and these infections are caused by a wide variety of anaerobic bacteria that are difficult to treat.  These bacteria can gain access to your body from the dental and bone infections and cause major problems.  Every chronic illness patient should see their dentist and have their teeth and gums examined regularly for infections.

QUESTION:

Why is it that patients with Fibromyalgia and CFS cannot take any of the antibiotics on the list.  Most of the people I know are allergic to them?  Then how can they get better if they have allergic reactions to the antibiotics?  Is that the disease causing the reactions?  I never had reactions to antibiotics before this happened to me, I could take anything.  Now I cannot even take certain vitamins.   I get itching everywhere inside and outside.  I have had where my throat swells up too.

RESPONSE:

WE RARELY FIND ME/CFS, FMS OR OTHER PATIENTS THAT CANNOT TAKE ANY OF THE RECOMMENDED ANTIBIOTICS FOR TREATMENT OF CHRONIC INFECTIONS.  WE BELIEVE THAT THE INFECTIONS DO CAUSE AN INCREASE IN ALLERGIC SENSITIVITIES.  HOWEVER, THESE USUALLY RESOLVE IN TIME AS THE TREATMENT RESOLVES THE INFECTIONS. SOME PATIENTS HAVE DONE WELL ON I.V. ANTIBIOTICS FIRST, THEN ORAL ANTIBIOTICS.  THE I.V. ROUTE SEEMS TO AVOID THE ALLERGIC RESPONSES, AND PATIENTS CAN  THEN TOLERATE THE ORAL DOSES.  IN THE CASE OF PATIENTS WHO CANNOT TAKE ANY OF THE REOCMMENDED ANTIBIOTICS, WE USUALLY RECOMMEND THAT THEY CONSIDER HAVING A VACCINE MADE OF THE BLOOD FRACTION THAT CONTAINS THE MICROORGANISMS. DR. BILL RAE OF THE ENVIRONMENTAL HEALTH CENTER OF DALLAS DOES THIS, AND THEY HAVE HAD GOOD RESPONSES.  THE ONLY PROBLEM FOR SOME PATIENTS IS THE COST.

QUESTION:

I am caring for a lady who has Fibromyalgia Syndrome.  I would like to know if this is contagious?

RESPONSE:

We consider only the FMS associated with chronic infections, such as Mycoplasma,

Chlamydia, etc. to be contagious, and then only moderately contagious.   In these patients, casual contact is not suspected in transmission, but prolonged contact can result in transmission, such as in immediate family members.  See our website, www.immed.org, for more information.

QUESTION:

I have been afflicted with Chronic Fatigue Syndrome (CFS) for over 14 years, since 1986.   About 16 months ago, I read one of your articles which suggested antibiotic treatment  for CFS.  As per the recommendation in your article, I started on a course of doxycycline (200 mg per day), and continued this treatment for about 12 months.  This treatment resulted in a major improvement in my condition. The persistent flu-like symptoms which I had experienced since the onset of my illness were dramatically reduced, as were other long-standing symptoms (including periodic burning sensations in my chest and throat, which disappeared completely while taking the doxycycline).  Nevertheless, my recovery was not complete, as I continued to experience some symptoms, including periodic fatigue, sleep disturbance, and symptoms similar to those of a constant head-cold.

RESPONSE:

Many ME/CFS patients require long-term (in excess of one year of antibiotic treatment) therapy, similar to the therapy recommended for Rheumatoid Arthritis by the Road Back Foundation (We published that about one half of RA patients also have mycoplasmal infections, so the use of antibiotics like minocycline is well justified).  Unfortunately, a large fraction of ME/CFS patients have both viral (HHV-6, CMMV, etc.) and bacterial (Mycoplasma, Chlamydia, etc.) infections, so some attention must be directed at possible viral infections as well as bacterial infections. Also, there may be other problems, such as yeast infections, heavy metals, etc. that could very well contribute to your condition.  Since you were sick for such a long period, it is EXTREMELY likely, and we feel very strongly about this, that you have multiple infections.  Thus therapy will be more complex (requiring multiple approaches) and take longer.  Some information on this is on our website, www.immed.org, Treatment Considerations.

QUESTION:

I began with joint and muscle inflammation 20 years ago.   I have lived with it and taken care of all the varied problems nutritionally. I did try a very short run of Tetracycline, but the physician who followed was really not well versed in the treatment.   I was diagnosed with Lupus about 10 years ago although the only lab that stayed consistently abnormal was an ANA titer of 1:320 or 1:640.  Due do an enlarged liver and elevated liver enzymes and an antimitochondrial antibody titre of 1280, I have been diagnosed with Primary Biliary Cirrhosis this past week.   Obviously medicine offers no hope except eventually a liver transplant.   They are not concerned as to why I have developed this problem.   And, to me it is life threatening.  I know during all these years, there have been times of severe chills.....almost as if a toxin was being released in my body.  I have had all kinds of symptoms from musculoskeletal, eye, GI, skin.   I have also tested positive for a mycoplasma in my blood.  But no physician seems phased by this.   I also believe I have systemic Candida but they also do not believe that.  In fact, it was rectal itching that first brought me to the doctor and my stool specimen shows 3 plus yeast growth.  It dawned on me last evening that if I believed Lupus had an infectious origin, then why not this biliary cirrhosis.  Afterall, it is also considered an autoimmune disease.

RESPONSE:

Most if not all of your signs and symptoms could be due to chronic bacterial, fungal and/or viral infections that have gone undiagnosed or untreated for years.  You should be treated for these infections, because without adequate treatment, it is unlikely that you will ever fully recover.  Such infections occur often in various chronic illnesses, and although some physicians may play down the possible role that these infections could play in chronic illnesses, it is our experience that they must be addressed  (treated) not avoided.  Recovery from complex chronic illnesses requires attention to a variety of problems, including immune and hormone system problems, infections, nutrition, metal contamination, chemical exposure, among others. 

QUESTION:

Can the Gulf War symptoms start 7or 8 years later?  Or normally would you notice the symptoms right away?  Would it be normal if they started right away, or did most of the studies show 1,2,3,4 years later?  I have written you once before and my husband does not believe his illnesses or mine have anything to do with the Gulf War due to when they started (7-8 years after the war).

RESPONSE:

The signs and symptoms of GWI can appear years after exposure.  We know this from studying veterans of the Gulf War. However, there is a problem with identifying GWI infections, such as the Mycoplasma fermentans infections found in ~40% of GWI cases. These are airborne infections, and they can slowly pass into the population. Immediate family members are at highest risk, and as such 77% of spouses and 65% of children born after the war in GWI families now have GWI. In some cases it took years before the signs/symptoms appeared in family members. However, when tested for mycoplasmal infections, when the symptomatic vet was positive so were the symptomatic family members.  Since your symptoms appeared so late, something could have triggered them in your veteran spouse, or you or your spouse could have been exposed to a veteran with a GWI-associated infection.

Prof. Nicolson

QUESTION:

Dr. Nicolson

I was curious about the possible effects that some non-steroidal anti-inflammatories might have on a hypervigilant immune system?  I have been suffering from symptoms of GWI since early 1992, but it has only fairly recently begun to create serious problems for me.  Since 1997, my condition has gotten progressively worse.  I now have permenant nerve damage in one leg and one arm, with parasthesia in the remaining extremeties.  I have also begun, since the same time, experiencing more frequent headaches, lack of concentration, and general body aches.  It was about that time that the VA began putting me on a variety of different NSAIDs; naproxen, oxyprozen, salsalate, sulindac.  The courses I have had in pharmacology have taught me little about these types of drugs, but I do know that I have been told that one effect of NSAIDs is to stimulate the immune system in order for it to fight the inflammation (and low grade infections).  An ortho. told me that this is why they work so much better than narcotics to relieve pain.  Is it possible that NSAIDs could be aggravating the problem of immune system hypervigilence that may be contributing to some of the ailments that are consistent with GWI?

RESPONSE:

We disagree with the use of antidepressants, non-steroidal anti-inflammatories and any other potentially immune-suppressing treatments used in the VA to treat GWI.  The problem for many GWI patients is that they have chronic infections, and these drugs do nothing to treat these infections, allowing them to progress. I am not aware that NSAIDs have any effect on chronic infections. Please see our website, www.immed.org, for an alternative approach. I have placed below some recommended tests that everyone with GWI should have.  Unfortunately, the VA will only consider a few of these in the context of ongoing clinical trials.

QUESTION:

After 6 months on doxycycline and Cipro, my daughter has improved dramatically, although she is a long way from well.  When your protocol calls for 6-week cycles of antibiotics, does that mean 6 weeks off, then 6 weeks on, or does it just mean for her to stay off until she starts to relapse, then give her 6-weeks worth (i.e., is she likely to continue to improve without more)?  Her doctor and I are reluctant to give her any more antibiotics because her bowel is in very bad shape, but we are afraid not to give them to her as well since they have so obviously helped, although she can only function at about 30% of her pre-illness level.  Also, would it be best to continue with both antibiotics (she tested positive for M.fermentens and M.pneumonia)?  The Cipro makes her very dizzy (at 1500 mg/day).  Thank you for your help.

RESPONSE:

It means 6 weeks on--2 weeks off; we usually suggest these cycles after 6 months of continuous therapy without a break before the 6 weeks on—2 weeks off cycles.  Your physician should be aware of the difficulty in treating both of these infections. It does  take quite a long time for recovery.  If she reaches a certain plateau and does not seem to be progressing further, then it would be advisable to test for chronic viruses (HHV-6 and CMV) as well as some other tests.  Your physician can contact our physicians for clinical advice.

To improve bowel function she should be on a program of probiotics (“friendly flora”).  These products are very important in maintaining a healthy bowel.

QUESTION:

Dear Prof. Nicolson,

Thank you for various articles on mycoplasma on the net - finally, I hope to see the end of my troubles. December 1988 I had severe (paroxysmal) coughs, difficulties of breathing, chest pain, night sweats etc. After several tests doctors finally (June 2000!!) found out that I had these small creatures (Clamydia pneumoniae IgG 128, Mycoplasma IgG 500). After eating doxycycline for 14 days and checking antibodies a while after that, values remained unchanged. My doctor said, never mind, you are cured. I still feel bad and now I realized that I need a prolonged treatment with antibiotics. I forwarded one of you papers (Sydney 1999) to my physician and hope to recover after nearly 2 years! Oddly enough, mycoplasma appears to be virtually unknown by most physicians in Sweden (about 20) I had contact with during that time, and knowledge of proper treatment is apparently lacking. Thank you again,

RESPONSE:

Thank you for your report, and I hope that you can spread the word in Sweden.  Our website, www.immed.org, has many new peer-reviewed medical publications that can be downloaded as html documents.  The proper treatment of these types of intracellular bacterial infections does take time. Most patients take over a year to recover, so the very brief period of antibiotics that your physician used is unlikely to do much good.

We recommend that every patient consult with their physician on their treatment program. Each patient is different. The document that you downloaded from our website on treatment suggestions contains general advicefor a reason, and it has been published in a medical journal.  For cell-invasive bacteria-positive patients (Mycoplasma, Chlamydia, Borrelia, Brucella, etc.) we usually recommend the first 6 months of antibiotics be undertaken without a break because few patients recover during this time period. Almost all require additional therapy.  The recommendation is are related to the nature of these infections, their location inside tissues and cells, their slow-growing natures and their relative resistance to treatment.

 The use of specific antibiotics is up to your physician, but we usually recommend to them that they start on one antibiotic and use this until no further gain is evident. At that time combination therapy or another antibiotic is usually advised. This of course depends on the type(s) of infection. Many chronic have multiple infections, and these patients often

also have viral infections, such as HHV-6A, CMV, etc.  For these patients we recommend  additional or concurrent treatment with antivirals after consultation with their physician.  Nutrition and diet, immune and hormonal support are essential for recovery.

Prof. Garth Nicolson
President & Chief Scientific Officer
The Institute for Molecular Medicine

QUESTION:

Prof. Nicolson - because you have not done double-blind studies, my Doctor is saying that Mycoplasma fermentans is not infectious in the body but a natural entity.  I tested positive at your lab for the M. fermentans, have been on treatment for a year with 2 antibiotics and have had a great improvement--almost no symptoms anymore, and recently I went through a cold with hardly any congestion, and Iwant to continue treatment, but my doctor is no longer here anymore and new doctor says M. fermentans are not the cause of my Late onset Asthma  developed in 1995.  What other information can I give my current doctor that will prove it?  Please help?

RESPONSE:

I find the statements from your physician difficult to understand. That Mycoplasma fermentans is a pathogen is well accepted, and in fact the U.S. Army, Armed Forces Institute of Pathology has had a U. S. Patent issued on M. fermentans entitled "Pathogenic Mycoplasma" (U.S. Patent No. 5,242,820).  These infections are contagious and can cause or are a cofactor in a variety of chronic illnesses. Also, there are animal models of various diseases that are caused by M. fermentans infections.  These models can be successfully treated with antibiotics, just like the clinical conditions they are modeling. The fact that you made such progress on long-term antibiotics is due to the treatment of M. fermentans and similar infections (most chronic illness patients have multiple infections).

According to Prof. Cassell, Chairman of the Microbiology Dept. at the University of Alabama Medical Center, in a review in JAMA 1997; 278: 2051-2052 on the role of mycoplasmas in Chronic Asthma-----

"such infections are often misdiagnosed or not even sought - and because of this, mycoplasmal infections often are either untreated or are inappropriately treated."

QUESTION:

Interesting enough I have had Walking Pneumonia several times in my lifetime, but what interests me is 1966 while I was working as a international councilor at U OF H Houston, I got really ill and was diagnosed with acute leukemia with four infections in my blood.  I mysteriously recovered almost overnight.  I now have FMS/CFS.

RESPONSE:

Your diagnosis of Acute Leukemia was probably not correct.  It may have been based on the high number of lymphocytes in your blood, but this may have been due to infection not cancer.  If you  really had a leukemia, then I doubt that you would have recovered so rapidly.  Since infections were found in your blood, these could have been the cause of the high lymphocyte counts.  You were probably given antibiotics for the infections, and this may be why you recovered so rapidly.  If one or more of the infections remained as chronic infection(s), then depending on the type of infection, this could be associated with your FMS/CFS.  We find chronic bacterial and viral infections in a high percentage of FMS/CFS/ME patients, and we consider that these infections must be adequately treated to promote recovery.

Prof. Nicolson

QUESTION:

My wife has been diagnosed with fibromyalgia syndrome for 3 years now; we have tried everything in the book but it kept getting progressively worse.  Two weeks ago my wife felt the lymph nodes in her neck were swollen and she complained of pain in them.  We called the doctor and he prescribed amoxicillian 500mg.  The first three days on it she felt horribly worse, then she felt wonderful...better than she had in the last 3 years.  As she was also on Neurontin 300mg at the same time, the doctor felt that it might have been the neurontin and upped her dose butthe amoxicillian ran out and now she is going downhill fast.

     My question is this--does amoxicillian aid in patients who are diagnosed with the bacteria you are researching?  It is such a strange event to have occurred; yet in light of what your research is suggesting, perhaps, just perhaps we have found an area to look in.  Please let me know if amoxicillian could potentiallly have led us to the underlying cause of her fibromyalgia.

Thank you so much.

RESPONSE:

If she had an infection similar to a Chlamydia pneumoniae infection, I would expect her to respond, but not if she had a mycoplasmal infection.  The reason for this is that Chlamydia and similar infections have a rigid cell wall whose synthesis can be affected by amoxicillin, but mycoplasmas don’t have the cell wall and are not sensitive to amoxicillin. There should have been no effect if she had a viral infection, because they don’t have the rigid cell wall either.  Thus we can probably eliminate certain infections in her condition, but it seems likely that a bacterial infection was involved in her illness