fibromyalgia

Update; Dominie's website has been invaluable to me for fibromyalgia info. She also has info on Chronic Fatigue and a few other things. If you have fibro or suspect fibro, check it out. http://www.fms-help.com/homepage.htm

I've been doing an experiment of sorts with my fibro. I was dx'd about 5 years ago and it took about 5 1/2 years to get dx'd. My general symptoms are tired; sleep disturbances; tight, weak muscles; a bruised feeling in several places in my body; hips, shoulders and knees are often achy, my hips being the worst; I have heart palpitations and chest pain, particularly in the heat; not being able to come up with the right word, particularly nouns (known as fibro fog); along with several other things but the ones I listed are the worse for me. On top of that I got what I call "fibro flu" where I feel achy all over, have a sore throat and sometimes a low grade fever and just feel like I'm coming down with the flu, sometimes multiple times in a week. That seems like it is triggered by too much activity and stress but once I sleep through the night I'm okay the next day.

After reading this; The data suggest that many infections may trigger CFIDS/FMS or that CFIDS and FMS may cause immune suppression--which then sets you up to catch a whole bunch of different infections which the body has trouble clearing. This is why it is important to treat all of the underlying processes simultaneously.
Testing for These Infections
Do not even bother checking IgG or IgM testing for these. PCR testing can be helpful, but be aware that even with the best laboratories, it is not uncommon to have a false-negative report--where you have the infection but it does not show up on the test. There are good arguments for not doing the tests and simply going ahead and treating the patients empirically if they have fevers, lung congestion or pustular scalp lesions. If they feel better after 2-4 months on the treatment, then you know you are hitting an infection and you can always intermittently stop the treatment to see how long they will need it. Also, there are many infections that are not tested for with these tests that would be effectively treated with the regimens that we are discussing. Many of these are likely to be infections that we don't even know exist. Because of this, if resources are limit* Doxycycline or minocycline, usually at dosages of 100 milligrams 2 times a day. These two antibiotics are in the tetracycline family. They are very effective against a number of unusual organisms (including, at times, Lyme disease). They should not be given to children under eight years old because they can cause permanent staining of the teeth.
Although all of these antibiotics can be effective, it is not uncommon for infections that are sensitive to the erythromycin antibiotics (Zithromax or Biaxin) to be resistant to tetracycline antibiotics (doxycycline, minocycline) and Cipro, and vice-versa. Therefore, it is best to try either doxycycline or Cipro first. If they are not effective, then try the Zithromax or Biaxin. The antibiotic should be taken for at least six months. If there is no improvement in ~2-4 months, switch to or add the other antibiotic or simply stop the treatment. It is helpful to check for low-grade fevers. As mentioned earlier, I am more likely to use antibiotics for CFIDS patients who have temperatures over 98.6[degrees]F, even if it is only 98.8[degrees]F (I consider 98.8[degrees]F a fever because CFIDS/FMS patients usually have low body temperatures). If the fever decreases with the antibiotic, it suggests that the patient does have one of these nonviral infections and that the antibiotic is helping. This would encourage me to continue the antibiotic trial--even if it takes up to 18 months to see an improvement in their symptoms.

And this; Fibromyalgia means that a previously healthy person develops unexplained exhaustion, fatigue and muscle aches and pains that last for more that six months; all blood tests are normal and doctors can’t find a cause. One recent report shows that a large number of people who were diagnosed with having fibromyalgia really had polymyalgia rheumatica, which does have abnormal blood tests. A recent report shows that many sufferers have low spinal fluid levels of vitamin B12 can be treated with 1000mcg of B12 each day. The diagnosis of fibromyalgia should be made only after all other causes have been ruled out. Many infections can cause fatigue and muscle pain. The evaluation should include tests for infectious diseases; such as Lyme disease and Hepatitis B or C, cytomegalovirus, toxoplasmosis or the helicobacter that causes stomach ulcers; autoimmune diseases, such as rheumatoid arthritis, lupus, Crohn’s disease or ulcerative colitis; hidden cancers such as those of the breast and prostate; hormonal diseases such as low thyroid; or side effects from a medication or illicit drug. Around 20 percent will be depressed. Most people miss work and complain of illness long before their diagnosis, but the majority will not have a known cause. Chronic fatigue means that the primary symptom is exhaustion, but most also have constipation and diarrhea. Fibromyalgia usually means that muscle and joint pains are major symptoms, but muscle biopsies are normal, pressure points are not reproducible and ultra sound is normal. Multiple chemical sensitivities mean that patients think that their symptoms are caused by factors in their environment or they consult doctors who think the same thing. Untreated, the symptoms that that lead to any of these diagnoses will usually continue in adults for the rest of their lives. I have prescribed doxycycline 100-mg twice a day for several months, and sometimes azithromycin 500-mg twice a week, and some of my patients get better. However, this treatment is not accepted by most doctors. Please check with your doctor.

And this; Multiple mycoplasmal infections detected in blood of patients with chronic fatigue syndrome and/or fibromyalgia syndrome.Eur J Clin Microbiol Infect Dis 1999 Dec;18(12):859-65"The aim of this study was to investigate the presence of different mycoplasmal species in blood samples from patients with chronic fatigue syndrome and/or fibromyalgia syndrome. Previously, more than 60% of patients with chronic fatigue syndrome/fibromyalgia syndrome were found to have mycoplasmal blood infections, such as Mycoplasma fermentans infection. In this study, patients with chronic fatigue syndrome/fibromyalgia syndrome were examined for multiple mycoplasmal infections in their blood. A total of 91 patients diagnosed with chronic fatigue syndrome/fibromyalgia syndrome and with a positive test for any mycoplasmal infection were investigated for the presence of Mycoplasma fermentans, Mycoplasma pneumoniae, Mycoplasma hominis and Mycoplasma penetrans in blood using forensic polymerase chain reaction. Among these mycoplasma-positive patients, infections were detected with Mycoplasma pneumoniae (54/91), Mycoplasma fermentans (44/91), Mycoplasma hominis (28/91) and Mycoplasma penetrans (18/91). Multiple mycoplasmal infections were found in 48 of 91 patients, with double infections being detected in 30.8% and triple infections in 22%, but only when one of the species was Mycoplasma pneumoniae or Mycoplasma fermentans. Patients infected with more than one mycoplasmal species generally had a longer history of illness, suggesting that they may have contracted additional mycoplasmal infections with time."
Mycoplasma blood infection in chronic fatigue and fibromyalgia syndromes.Rheumatol Int. 2003 Sep; 23(5): 211-5. Epub 2003 Jul 16."Chronic fatigue syndrome (CFS) and fibromyalgia syndrome (FMS) are characterised by a lack of consistent laboratory and clinical abnormalities. Although they are distinguishable as separate syndromes based on established criteria, a great number of patients are diagnosed with both. In studies using polymerase chain reaction methods, mycoplasma blood infection has been detected in about 50% of patients with CFS and/or FMS, including patients with Gulf War illnesses and symptoms that overlap with one or both syndromes. Such infection is detected in only about 10% of healthy individuals, significantly less than in patients. Most patients with CFS/FMS who have mycoplasma infection appear to recover and reach their pre-illness state after long-term antibiotic therapy with doxycycline, and the infection can not be detected after recovery. By means of causation and therapy, mycoplasma blood infection may permit a further subclassification of CFS and FMS. It is not clear whether mycoplasmas are associated with CFS/FMS as causal agents, cofactors, or opportunistic infections in patients with immune disturbances. Whether mycoplasma infection can be detected in about 50% of all patient populations with CFS and/or FMS is yet to be determined

I asked my GP to read these and a few more similar articles and he did. Together we made the decision to try the doxycycline. I'm taking 200mg once a day. He's letting me try it for 3 months and see what happens and then we'll go from there. I've been on it for almost 2 months and now and the thing that's different is I haven't had "fibro flu" in almost 5 weeks. I've not had any low grade fevers either. I don't expect it to cure my fibro but I wouldn't have guessed that it would do something to the fibro flu and unexplained fevers. I'm not saying this would help everyone with fibromyalgia and I'm certainly not saying all those with fibro should try it, I'm just telling my experience with doxy so far. Thankfully I have an understanding doc who is willing to think outside the box with me. Like I said, I never would have guessed that it would affect the fibro flu and fevers but after about 3 weeks or so of being on doxy I was thinking, hey, I haven't had fibro flu this week and I've had plenty of activity and stress to trigger it. Then I started paying attention and I didn't have it any more after that either. Weird. You take the doxy on an empty stomach and it makes me feel a little puny or have stomach pain until I eat something. I'm also taking acidophilis to help put "good bacteria" back where it belongs. And that's my fibromyalgia and doxycycline story so far.