Fibromyalgia

Chronic pain characterized by tender points, sleep disorder, fatigue

Pamela's Story: Recovery from Fibromyalgia with Chlamydia Pneumoniae Treatment

Submitted by Jim K on Wed, 2006-06-07 23:31

This former patient of Dr. Powell asked me to post this story for her. (Jim K)

 

I first learned of Dr. Powell in the summer of 2003. 

Suffering with chronic neck and back pain most of my life, I tried physical therapy, relaxation techniques, weekly massage and exercise…but could never manage the pain.

The numerous doctors I saw over the years could never find anything wrong so they just gave me pills and sent me on my way.  By the time I found Dr. Powell, I felt like my body had become toxic with drugs.  Everyday, in order to function, I took the following:

∑ For pain: 90mg of Methadone in addition to 8-12 tabs of Norco
∑ For brain function (and to keep me awake): Ritalin and Provigil
∑ For depression: Wellbutrin (also helped keep me alert) and Effexor
∑ For sinus/allergy issues: Pseudoephedrine and Allegra
∑ For sleep: Pamelor among others…

My pain level was 10/10 without narcotics and 2/10 with; energy 3/10; brain function 3/10 (serious fibro-fog); and my stress was 9/10.  I was working full time and deteriorating fast!

One of the first things Dr. Powell had me start was T3 (while carefully monitoring temperature and heart rate daily).  Within 3 weeks I started getting my energy back and I felt like a new woman!  My pain even started to subside.  He warned me this would happen and my inclination would be to over-do it.  But I ignored that.  I felt so great I seemingly tried to catch up on years of reduced performance.  Then I crashed.

After cycling through that pattern 3-4 times (slow learner…) I finally gave up and listened to Dr. Powell.  The missing piece was changing my behaviors, which had led to years of accumulated stress.  I was a People-Pleaser, Performance Maniac, Care-Taker (of everyone but myself) and Perfectionist - and I had to change.

This was undoubtedly the most difficult, but the MOST beneficial part of the protocol for me.  Through the use of Voice Dialogue, personal therapy, journaling and a lot of emotion (what was THAT?)… I slowly started to change.  I stepped out of denial regarding the behaviors that had so depleted me (people-pleasing, over-working, care-taking…) and surrounded myself with people who would support the changes I needed to make.  I cannot underestimate the determination it took to accomplish this – but it was 1000% worth every challenging minute!

About a year into my treatment, in his scientist/researcher role, Dr. Powell discovered the important relationship bacteria plays in FM, and encouraged me to begin an antibiotic treatment.  I have to admit I was reluctant because I was feeling SO much better than before…and I’d heard the antibiotics could make me feel worse – before I felt better, due to the bacteria dying off.  I debated the issue for 3-4 months and then decided I should just go for it and see if this could take me the rest of the way to healing.  I really didn’t believe I could feel any better, but my improvement was exponential!  I had been sick for so long I had no idea what being well really felt like.  And, by carefully following Dr. Powell’s recommendations for minimizing the effects of the die-off process, I found the treatment wasn’t nearly as bad as I had feared.

Other than a small amount of Wellbutrin and some seasonal allergy meds, which I am almost free of, I no longer take ANY of the drugs listed above!  More importantly I have no pain.  My brain works, my energy is full and I am excited about life.  What is most wonderful is the joy I now experience in my relationships.  There was a long period when I was afraid I would never be able to really enjoy life again. 

Now, my job is just that…a job.  I don’t take it home with me or even try to win the kudos I used to long for.  Instead, my satisfaction comes from spending time with my family and taking care of myself.  I’ll never forget the birthday party my husband gave me when he made a toast “to having his wife back”.  In my new life I enjoy playing with my dogs, kayaking with my husband, taking art classes at the local college and exercising regularly so I can go skydiving and surfing with my son on his 21st (and my 50th) birthday.  That will be in early 2008 and I have no doubt I’ll be ready!

I used to scoff at books that talked about reversing Fibromyalgia, but now I am living proof it can happen.  I wholeheartedly trust Dr. Powell and his (often evolving) protocol not only because of the success I’ve experienced, but because I know he is one of a rare few doctors who still practice medicine for the sole purpose of seeing lives restored.  I hope you find the same.

Pamela McClanahan 

Diseases associated with Cpn: the exhaustive list

Submitted by Jim K on Sun, 2006-01-22 08:41

I have culled from Mitchell & Stratton patent #6,884,784 an exhaustive list of diseases where Cpn has been implicated as a possible cause or co-factor (reference: Mitchell & Stratton patent #6,884,784):

Diseases where an association has been discovered between chronic Chlamydia infection of body fluids and/or tissues with several disease syndromes of previously unknown etiology in humans which respond to unique antichlamydial regimens include:

Editorial comment: Strong findings from their research. If you have any of these it suggests to me that at least an empirical course of the combination antibiotic therapy is strongly indicated, with or without serology.


Multiple Sclerosis (MS)
Rheumatoid Arthritis (RA)
Inflammatory Bowel Disease (IBD)
Interstitial Cystitis (IC)
Fibromyalgia (FM)
Autonomic nervous dysfunction (AND neural-mediated hypotension);
Pyoderma Gangrenosum (PG)
Chronic Fatigue (CF) and Chronic Fatigue Syndrome (CFS).

Stratton/Mitchell & Siram Case Reports

Submitted by Jim K on Sat, 2006-01-21 20:33

Does it work?

It has been noted that most users of the combination antibiotic protocols commenting here have not been on the treatment long enough to give a big enough pool of reports to feel assured of the efficacy of this approach. I had asked Drs. Stratton, Wheldon, and Powell to perhaps tally up at least some basic numbers from their case experience to help us out with this problem, but this would involve problems of confidentiality and use of private data, etc.  

Then, I suddenly realized that we already have a good list of anecdotal reports of response to treatment reported data available to us... right in the Stratton/Mitchell patent materials! (Sheepish, embarrassed grin). So I took it as a project to summarize this data by disease treated. Occasionally I have used the exact wording from the patent materials as they were brief and descriptive. We have the full text referenced in our treatment and links if you want to see more detail.

All reported had with positive serology for Cpn using the highly sensitive tests developed by Stratton/Mitchell. I left out a few whose diagnosis was not clear to me, you can see them in the patent materials #6,884,784
All on some form of the combination antibiotic therapy protocol.

Much ado about a small poll

Submitted by Jim K on Mon, 2006-01-16 21:09

Summary of our Cpn Treatment Poll:

The poll was out for two weeks, and represents a snapshot of protocol users at this point in time. We had slightly different numbers participating in each section of the poll, perhaps some questions did not have exclusive answers for those voters. Obviously, 25-28 people is not enough to draw scientifically valid results from, but I intend to speculate on some suggestive patterns in the data.

Gender:
Female: 61% (17 votes)
Male: 39% (11 votes)
Total votes: 28
This ratio is commonly reported in CFS/FM, MS and other "autoimmune" diseases, so is not surprising. We would expect that if more people with Cardiac diseases were searching out Cpn treatment, with a higher male to female ratio, this might change.

Age:
20-29 years = 7% (2 votes)
30-39 years = 14% (4 votes)
40-49 = 32% (9 votes)
50-59 years = 39% (11 votes)
60-69 years = 7% (2 votes)
Total votes: 28
Our largest group is between ages 40 to 59. I suspect that this age does not reflect the period when people are morel likely to be infected, but rather a range where long term persistent infections are have accumulated enough damage to force us to seek out "desperate measures" such as the multi-antibiotic protocol recorded here.

Primary diagnosis:
Over half the total in the poll have a diagnosis of MS. The second largest group are those with a diagnosis of CFS/FMS. This likely influences the treatment response reported later which suggest that improvements are noticed most after 5 or more pulses.
CFS/FM = 28% (8 votes)
MS = 55% (16 votes)
Asthma = 3% (1 vote)
Cardiac disease = 3% (1 vote)
OTHER = 10% (3 votes)
Total votes: 29

Serology
Positive blood test for Cpn
48% (12 votes)
Negative blood test for Cpn
16% (4 votes)
Not been tested for Cpn
36% (9 votes)
Total votes: 25
Well over half either have negative or no serology for Cpn, suggesting that they are engaging in a completely empirical (based on symptoms or theoretical connection between disease and Cpn) protocol.

Antibiotics
I take AT LEAST TWO of: doxycycline/azithromycin/roxithromycin/rifamcin/minocycline/INH-: 73% (19 votes)
Single antibiotic only: 20% (5 votes)
I take only INH: 8% (2 votes)
Total votes: 26
This poll speaks for itself. 73% are already on the dual antibiotics, a small number appear to be early in treatment, confirmed by findings below that 40% have not yet done a pulse of bacteriacidal,  and have only added one agent. As INH is used as a single agent with the flagyl pulses in some versions of the Cpn protocol and, together with NAC for the EB phase I have reported it separately.

Bacteriacidal Agent Used-
I take metronidazole (Flagyl) for bacteriacidal pulses
81% (13 votes)
I take tinidazole (Tinactin) for bacteriacidal pulses
19% (3 votes)
Total votes: 16

Pulses of bacteriacidal
I've done NO pulses yet of metronidazole/tinidazole
40% (10 votes)
I've done some partial pulses of metronidazole/tinidazole
4% (1 vote)
I have had LESS than 5 full pulses (at least 5 days each) of metronidazole/tinidazole
24% (6 votes)
I have had MORE than 5 full pulses (at least 5 days each) of metronidazole/tinidazole
32% (8 votes)
Total votes: 25
Over half in this small pole have done at least a full pulse of bacteriacidal agent, with only 8 people reporting 5 full pulses or more. This shows that we are still, as a group, in earlier phases of treatment. As the results below suggest, more significant improvement starts to accrue beyond 5 pulses of the bacteriacidal.

Response to treatment-

1. On 1 0r 2 antibiotics ONLY My primary condition is the SAME or WORSE
13% (3 votes)
2. On 1 0r 2 antibiotics ONLY My primary condition is SOMEWHAT improved
13% (3 votes)
3. On 1 0r 2 antibiotics ONLY My primary condition is SIGNIFICANTLY improved
13% (3 votes)
4. Less than 5 full pulses: My primary condition is the SAME or WORSE
13% (3 votes)
5. Less than 5 full pulses: My primary condition SOMEWHAT improved
9% (2 votes)
6. Less than 5 full pulses: My primary condition SIGNIFICANTLY improved
4% (1 vote)
7. MORE than 5 full pulses: My primary condition is the SAME or WORSE
0% (0 votes)
8. MORE than 5 full pulses: My primary condition SOMEWHAT improved
13% (3 votes)
9. MORE than 5 full pulses: My primary condition SIGNIFICANTLY improved
22% (5 votes)
Total votes: 23

These results are more obvious when grouped.
If we collect together everyone in early phase of treatment (#1-6) and we see that 26% are the SAME or WORSE
28% are SOMEWHAT IMPROVED
17% are SIGNIFICANTLY IMPROVED
Actually, to have 35% already reporting any improvement in their condition this early in the protocol is striking to me. I expected less noticeable improvement at this stage, especially given the numbers being treated for otherwise "intractable" diagnoses such as MS and CFS/FM.

But it is when users of the protocol get to 5 pulses (#7-9) or more, in this small sample, that the number in SIGNIFICANTLY IMPROVED seems to begin to creep upwards. Perhaps when we get a better sample of longer term users we will be able to sort out the "magic number" of pulses where more significant improvements take place. From reports in blogs and forums on this site, somewhere around 7-9 pulses seems to be a period where people are feeling much better and more significant changes in their primary diagnosis are occurring.

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

Submitted by Jim K on Sun, 2005-11-06 16:33

I spoke with a rheumatologist in California, Dr. Michael Powell, who is cautiously using a combination of antibiotics in conjunction with standard therapeutics for the treatment of nanobacterium (including Cpn) in patients suffering from FM, CFS 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 serology for Cpn when other clinical signs lead him to suspect some involvement. Serologic assays for IgG, IgM and IgA are sent to confirm infection prior to treatment. He would like to see a positive serology 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 intracellular 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).

INH and supplements for endotoxins-
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 NAC 600 mg twice daily, INH 300 mg once daily before breakfast, and metronidazole 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 infections 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.

David Wheldon's story: Cpn Treatment of Cardiac & Myalgic symptoms

Submitted by Jim K on Thu, 2005-10-20 08:50

I was born in 1950; I’ve always been very active. As an adolescent I had recurrent and painful sinusitis; this vanished in my late teens. Amongst my activities I listed caving (spelaeology) which requires some physical fitness. I continued cave exploration until well into my forties.

In 1999 my wife, Sarah, and I both caught a respiratory infection which started off as a sore throat; in a fortnight it had become a mild pneumonia. Sarah developed frank asthma which required a Salbutamol inhaler. I also had a wheeziness, particularly on exertion. This eventually cleared. I also suffered with sinusitis again. I didn’t seek medical advice.

A few months later I began to find turning my head not only painful but difficult. As I cycle to work this grew to be problematic. I found that if I wished to turn right (UK) I had to dismount and walk across the road. At about this time I noticed that I was developing soft-tissue swellings in my neck; these began to grow quite quickly. Shortly after this I found I had myalgia in my shoulders and the long muscles of my back. Sarah noticed that I was walking very awkwardly; if I wished to turn my head I had to turn all my body. Flexion of the spine was difficult, too.

In 2002 I noticed that my resting heart-rate had increased, and there were increasing numbers of dropped beats. These were quite alarming in the dead of night. Sarah noted that my apex beat was really hard and actually audible at night. I was worried by this time, but was more concerned with Sarah’s aggressively advancing MS, which was much more troubling.

By 2003 All my symptoms increased in intensity; they now included constant pleuritic pain (a sharp pain in the side when breathing) on the right. Also there was an exquisitely painful longitudinal white streak along the nail of my left forefinger. I began to feel vertigo when moving suddenly: it was as though I were standing on either side of a small see-saw. My blood pressure was 150/95. I had my blood tested for Chlamydia pneumoniae antibodies; the IF titres were 1:128. This level is seen in many asymptomatic people. Low titres mean little; they certainly don’t exclude the infection. Borrelia antibodies (Western Blot) were negative.

I began a course of empirical antichlamydial treatment; it was very similar to Sarah’s, namely doxycycline 200mg daily and roxithromycin 300mg daily. (it doesn’t matter whether you take all the daily dose at once with these.) That night I felt sweaty and ill; this feeling carried on for five days; it was worse in the evenings, and was accompanied by an odd state of mind.  All kinds of visions went through my mind, and Sarah says that I was babbling, changing the subject almost in mid-sentence. But this subsided. After three months I began a short course of metronidazole in addition to doxycycline and roxithromycin. Towards the end of this course I had a rather ominous feeling that something was about to happen. Three weeks later I began another five-day course of metronidazole. On the fourth day I began to feel pain in the muscles of the back of the neck and in the soft tissue swellings to the side of my neck. That evening I began to sweat profusely, and had very strong muscle fasciculations over my torso. These continued for a week or so after stopping the metronidazole; again they reached their peak in the evening, so I was able to work during the day. (Evening fevers seem quite common with resolving intracellular infections.) They were followed by crushing pains in both upper limbs, which I take to be a mild form of Reflex Sympathetic Dystrophy. Fortunately these eased within weeks. My weight dropped from 95 to 81 Kilos within a few weeks. Within three months the neck swellings had almost subsided. Reactions to the third pulse of metronidazole were slight. Reactions to the fourth, fifth and sixth were negligible. My blood pressure dropped to a typical morning BP of 115/75; the apex beat became actually quite difficult to feel, and my pulse became very soft and even. All the ectopics had gone.

Now I am on intermittent antibiotics and supplementation; this includes N-acetyl cysteine 600mg twice daily for the purpose of bursting any chlamydial elementary bodies which remain. I still have a little trouble with vertigo and ringing in the ears, but not enough to stop me riding my bicycle. I’m pain-free and supple, and have full movement of my spine and head. There is an impression of ongoing soft-tissue remodelling.

Sarah and I had a similar respiratory infection; she developed frank asthma, and I an intermittent wheeziness. So though I have no hard evidence that we both had an infection with Chl. pneumoniae it seems clinically likely. No other known pathogen causes a respiratory infection after the pattern described. Often this is a clinical diagnosis. We have to accept that, on an individual basis, present-day laboratory tests may have little diagnostic value.

I managed to work full-time during this illness, coming home to cook for us both. We kept our household together. Some of our social friends were alarmed and lost touch, but, well, I don’t suppose they were really friends.

Sarah’s recovery from secondary progressive MS (where recovery is not a part of the natural history of the disease) is recounted elsewhere on this site.

Fibromyalgia- is there an infectious connection?

Submitted by Jim K on Sun, 2005-09-04 12:45

From roadback.org

Fibromyalgia (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.