Chronic Fatigue Syndrome

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Syndrome characterized by viral or chemical onset, unrelenting fatigue, unrefreshing sleep, sleep disorder, immune abnormalities.

Co-infections with C. pneumoniae and HHV-6 in CFS and MS

Research has found that a significant subset of CFSi and MSi patients have chronic persistent c. pneumoniae infectionsi.  However, mounting reliable research evidence has also connected active persistent HHV-6 infections with both diseasesi also.  Human Herpesvirus 6 is a neurotropic and lymphotropic virus capable of causing persistent encephalitis">i and of destroying natural killer cells and CD-4 cells.  Of studies using assays which could differentiate between active and latent infection, 83% of studies showed a positive association between HHV-6 and CFS and 78% of studies showed an association with MS.  (See www.hhv-6foundation.org<).  Using PCRi, which is not a particularly sensitive method for detecting infections (false negative rates are very high), Dr. Garth Nicholson found that 30.5% of CFS patients were positive for HHV-6, 7.5% for chlamydia pneumoniae, and 52% positive for a mycoplasma species.  Patients with more than one infection had significantly more severe symptoms than patients with only one infection, but no infection was associated with more severe symptoms than the others.

Jim's Blog 11/8/05

Just into day 6 of a Tinidazole pulse (my 4th full pulse, probably 10th overall). i'm actually feeling so good on it that I may continue a couple more days: more energy, less brain fog, burning ache in some muscles and joints, but quite tolerable given what I've had before. I actually felt so much energy for a time today that i was almost giddy. Wasn't sure whether it was a neuroi effect, or just that I'm so unfamiliar with having normal energy that it made me feel high!

I had started the amoxicillini a month or so back, and while it made clear how much EBi load I had, I felt I was going downhill over the time I was taking it even though I had worked up to a full dose. The brain fog worsened and I could do little creative thinking or writing. I became obsessive tinkering with the www.cpnhelp.org< site because even in brain fog I could get something working and feel the reward of something concrete, when other projects languished from my pea-soup brain. Also, I was grateful to see and hear others echoing their own stories and feel encouraged to get through this phase. I continue to be hugely grateful for everyone here who has shared their struggles and helped me to feel less alone. Thanks.

So, when I started this tini pulse, I decided to switch to NACi twice a day. I suspect this is some of the burning muscles and joints, but won't know for sure until I stop the tini. But either that switch or the fact that the tini is freeing my mitochondria up from cryptic organisms (or, God knows, some other undetected bug), it's less of a load on my system.

These dips in the road are a problem. Hard to assess from being in the cart. On the one hand, I know how much better I am now than 1 year ago when the walls of the tunnel had closed in on me. On the other hand, each time I've added a layer to the treatment protocol, I feel much worse for a while. The question being, asked from being bumped into the bottom of the cart so to speak, for how long? My wife actually questioned whether I was getting better or not, since she saw me flattened again by the amoxi and, from her perspective, I looked as bad as I had a while back. My energy worker keeps telling me how different my body feels and how much more core-energy I have than I had even a couple months ago. But adding the amoxi flared up a lot of pain, and just when I was feeling able to start exercising again, now I'm waiting for the pain levels to come down.

I don't have any belief that I'll be "what I once was," since it's been so damned long that I've had CFSi/FM/MCS, I really don't know who that would be. But if I have my brain back and some energy and zest for life, and less pain so I can exercise again, I'll be very happy. So far, I'm happy to be on Tinidazole, which is something I'd never expected I would say! I'll check back and let everyone know how long a pulse I end up with.

Dr. Michael Powell: A Rheumatologist Treating Cpn in CFIDS, FM, Lupus and other "auto immune" disorders

I spoke with a rheumatologist in California, Dr. Michael Powell, who is cautiously using a combination of antibioticsi in conjunction with standard therapeutics for the treatment of nanobacterium (including Cpni) in patients suffering from FM, CFSi and autoimmune disorders. His results with this treatment program have been encouraging. He faxed me some examples of patient feedback forms, excerpts from which you can see below. Recovery is not instantaneous, but tends to occur over a 6 to 12 month period. The graphs of subjective improvement are drawn from visual analogue scores compiled during each visit. When summarized in this manner these data give a time-lapsed impression of the response to treatment.

One of the interesting things he mentioned was in relation to negative patient serologyi for Cpn when other clinical signs lead him to suspect some involvement. Serologic assays for IgGi, IgM and IgA are sent to confirm infection prior to treatment. He would like to see a positive serologyi in patients before engaging them in a combination antibiotic protocol, but recognizes that patients may not have antibody reactions. This may be due to the ability of intracellulari organisms like Cpn to evade a humoral response (antibody production), immunoglobulin depletion, or other factors. In these cases, when there is a high index of suspicion for the infection without a humoral response, he tests the spouse of the partner for Cpn. He sees the "non-symptomatic" partner as a good indicator of Cpn in the patient, given the infectious nature of Cpn. Thus far, most spouses are positive when an ill family member is non-reactive.

In our discussion Dr. Powell pointed out the many similarities between TB and Cpn.  Both organisms  can evade our immune system.  Both organisms can be carried from the lungs, the original site of infection, and infect other tissues. Both require prolonged treatment with multiple drugs to eradicate the infection.  Both are sensitive to stress levels. Optimal therapy is being evaluated at various research centers and new medications for Cpn are on the horizon (see activbiotics.com).

INHi and supplementsi for endotoxinsi-
Dr. Powell finds most patients improve on a standard combination antibiotic protocol for Cpn. Rheumatologist have apparently been using doxycycline for many years with success for inflammatory arthritis but there is evidence that using doyxcycline in combination with rifampin is even more effective. Some patients plateau after about 8 months of treatment he has found variations in the treatment protocol have made a difference. One protocol he uses involves the use of NACi 600 mg twice daily, INH 300 mg once daily before breakfast, and metronidazolei 500 mg twice daily pulsed with 5 days on and two weeks off.  It is essential to start each agent separately and gradually increase the dose over weeks or months as tolerated.  The use of Vitamin C 500 - 1000 mg four times daily (the half life of vitamin C is 30 minutes and little remains after 3 hours) to offset the release of toxins during therapy.  B6 is important to control INH related peripheral neuropathy.  Monthly laboratory evaluation of AST, ALT, Cr, and CBC are recommended for all who engage in this protocol.  It is not uncommon for liver enzymes to show a mild elevation during the initial stages of treatment.  Antibiotic therapy should be temporarily discontinued during periods of toxicity, should it arise. He emphasized the importance of insuring that yeast and fungal infectionsi do not overgrow during protracted antibiotic use. He recommends the use of acidophillus, nystatin, diflucan, oregano oil, and/or grapefruit seed extract as needed to prevent secondary opportunistic infection during treatment.

Covering for the possibility of yeast and fungal overgrowth during antibiotic therapy is essential.  If diarrhea develops, stool must be evaluated for antibiotic associated diarrhea (C. difficile).  This is not a simple protocol and it is best if it is guided by an experienced clinician who is familiar with the medications and methods of minimizing toxicity related to killing the nanobacterium.

A link to Dr. Powells clinic may be found on our links page. Dr. Powell does do telephone consultations by arrangement and may be a resource for those who have had difficulty finding a Cpn knowledgeable doctor in their area. He requires an initial visit with a physical examination before initiating therapy (lab work can be performed prior to the initial visit to facilitate diagnosis and treatment), and monthly laboratory testing with monthly phone consults are then the norm. Treatment of related hormone imbalances in the thyroid system and nutritional support, temporary antidepressant support as needed, and sleeping medications are useful adjuncts to the antibiotic protocol. It is necessary for patients to have a primary care physician to monitor health matters that are unrelated to FM, CFS and autoimmune disease.

How to take NAC? (N-acetyl-cysteine)

I just got my NACi in the mail. I have been all over the net. Can anyone tell me with certainty whether you take this stuff with an empty stomach, or not, and what dosages are recommended?

 I see 600mg 2x a day by some and then I see HIV positive and cancer patients taking huge doses.

Any clues or references would be appreciated. 

 

Chronic Fatigue Syndrome & Cpn Treatment

I've had CFSi, FMSi and MCS (multiple chemical sensitivities) for about 25 years (see my story< for details). I also have positive serologyi for Cpni. I say "also" because at this point it's not clear how much or in what ways Cpn has contributed to this syndrome for me, and whether getting rid of Cpn will "cure" my CFS/MCS/FMS. 

It is clear to me that my Cpn load has been sky high-- not indicated by the ratio of serologyi titers but in the virtually disabling reactions I've had to each phase of additional antibiotic-- and it's clear that the amount of pain, inflammationi, and fatigue I've had is directly related to Cpn, as these continue to diminish gradually but steadily as I'm on the protocol longer.
 
The overall trend has only now gotten clear, almost a year into the protocol, and only after I had added Amoxi and discovered how much EBi load I've been carrying in my tissues (lot's). It's also taken me 9 cycles of flagyli/tinidazole to get to the point where I actually feel better during the pulse rather than crappier.And only the last three have actually been full 5 day courses,

Cpn Treatment Information

The links below will take you to pages with specific information involved in the treatment of Cpni.

Diagnostic Testing For Cpn<
Information on serological testing and the problems of this in Cpn.
Combination Antibiotic Treatment Protocols for Cpn<
Links to pages on the current versions of Vanderbilt/Stratton and Wheldon Protocols for treating Cpn infectionsi in various diseasesi.
Experts Comments<

Commentary and interviews  with various experts in treating Cpn which help guide and inform about various facets of treatment.
Treatment Reactions<
Information on some of the kinds and sources of treatment reactions one can expect on combination antibiotic protocols in treating Cpn, including cytokinei reactions, endotoxini reactions, secondary porphyriai and other reactions. These are often lumped under the term "herx," an inaccurate term and not as useful as really understanding what's going on.

 

Fibromyalgia- is there an infectious connection?

From roadback.org<

Fibromyalgiai (FM) is a commonly misunderstood, sometimes misdiagnosed rheumatic disease. The main symptoms are achiness, pain (more in the muscles than in the joints), stiffness, fatigue, accompanied by headaches, depression, sleep disorders, Raynaud's and irritable bowel syndrome. The sites of pain are located in specific areas call-ed tender or trigger points.

The painful tender points are located where the ligament attaches the muscle to the bone. There are 18 tender point locations. Sensitivity at 11 points defines a diagnosis of fibromyalgia. FM is not life threatening nor does it cause physical deformities. Many lab tests are within normal range. In fact, most patients look extremely well and fit, making it difficult to account for the degree of clinical suffering they are experiencing, yet 10-30% of fibromyalgia patients are disabled to some degree because of their disease symptoms.

Multiple co-infections in CFS

Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of chronic fatigue syndrome patients: association with signs and symptoms.
Nicolson GL, Gan R, Haier J. APMIS. 2003 May;111(5):557-66.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12887507&dopt=Citation

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