# flare?



## geomv (Aug 9, 1999)

Hi to all, I have had a pretty good winter this year, but I have been very weak, very tired: I have to keep sitting down, I think I have just figured out that I must be in a flare. What do you think? I sure hope not, because last year I was in a flare from Dec. til July. It was awful. My upper arms ache, and I just plain don't feel good. I've been like this a little over a week, thinking I'll feel better tomorrow, then I don't. It's so hard to convince myself I have a chronic illness, was diagnosed 3 years ago, still can't get it into my head. I've had a lot of sinus problems this year, I've had a very annoying cough for weeks. I feel so run down, and weary. I'm sure you know what I'm talking about, my family doesn't really it's bad, I've been tired since the 80's. Well, I just needed to vent, hope you all are doing well.


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## Guest (Apr 8, 2001)

It could be a combination of fibromyalgia and infection from the sinus problem. You may need to take an antibiotic. If you have IBS D and can not take regular antibiotics, a natural antibiotic, Colloidal Silver, can be purchased at a health store and is helpful for me. You take 2 T. per day and irrigate your sinus, then put a little in each nostril with a dropper. It takes about 5 days to see a difference. Good luck!------------------Mildred


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## Feisty (Aug 14, 2000)

Hi Geomv!Have you been to the Doc lately? Is it possible you have "walking pneumonia"? You're symptoms sounds sort of like that. Some people get a fever with it, but some don't----not until it gets really bad. Get checked, please.Take care.Karen


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## weener (Aug 15, 2000)

Hi Georgia:I'm sorry to hear that you are feeling so rough. I also have a sinus problem since last January. Can't figure if it's connected to the fm or sinusitis or allergies. I'm using nasonex and saline spray. I agree with Feisty about going to the doc to have things checked out. Everyone I know seems to have either a cold or flu right now. My sister has had a cold for a month with a horrible cough for 3 weeks. Doc said it is viral and that they couldn't give her anything for it.Please have it checked out just to give yourself a peace of mind. I hope you start feeling better soon.


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## Nina M (Feb 10, 2001)

Might be of interest to those who have CFS/FMS and long term chronic sinus problems. Had myself, got nasal swab, bug gone, no more sinus.Staphylococci and CFS/FMby M A Smith, 1998, with updates Scientists in Sweden and Australia have been independently working on a possible link between bacterial infections and the symptoms of fibromyalgia and chronic fatigue syndrome ABC report | A 3am phone call | Up your nose! | ReferencesFurther information More recent research abstracts (added 2001)ABC reportIn February 1998 an international Conference called "New Approaches to the Treatment of CFS" was held in Sydney to discuss the clinical and scientific basis of the disease. At the time there were a number of short television news reports that briefly mentioned some of the theories being discussed and, hearteningly, gave the overall message that there is now hard scientific evidence of a physical basis for CFS. Here is a transcript of part of an ABC report [1] about one piece of promising research that could reveal a cause of chronic pain: New research could lead to an even brighter [sic!!] outlook for Chronic Fatigue Syndrome sufferers. In a breakthrough at the University of Newcastle, scientists believe they've found the bacteria which causes the fatigue and pain suffered by patients. Micro-organisms responsible for digesting and absorbing food are grossly different in Chronic Fatigue Syndrome patients. That change in the type and number of micro-organisms produces a toxic chemical, and researchers believe this can destroy parts of human cells. Dr Henry Butt, University of Newcastle: "There's a dramatic change in the type of micro-organism in the gut, resulting in a different type of material being absorbed." The Australian scientists have identified staphylococcus bacteria within Chronic Fatigue Syndrome patients. Their laboratory findings back up clinical trials in Sweden where a vaccine targeting staphylococcal infections is achieving remarkable results. Prof Tim Roberts, University of Newcastle: "It is really exciting to find that a clinical treatment based on a vaccine against some of these toxins has an effect." Prof Carl Gottfries, University of Goteborg, Sweden: "We have known patients who've been vaccinated for four to six years. We have followed 23 patients in that way and half of them - a bit more than half of them - have been rehabilitated to work. It is spectacular because these patients have been on the sickness list for in average 12 years." The [Swedish] researchers say patients injected with the vaccine experience significantly less fatigue and less pain than a control group. A large-scale trial is now underway to verify the preliminary results. Prof Carl Gottfries: "I consider this really as some sort of breakthrough in the research of these patients." Prof Tim Roberts: "The link between our work and his work still has to be cemented, but at present it's very interesting and potentially very exciting." (my transcript) ContentsA 3am phone callAt the conference, Dr Gottfries described how he had started using staphylococcus toxoid vaccine on himself and his patients in Sweden when they had developed chronic fatigue and neurological symptoms (what we would now call CFS) after a flu epidemic in 1959. It wasn't until much later, from 1991 onwards, that he started doing scientific studies on small groups of patients. The results were so good that he is now doing a larger study. He didn't know that anyone else was doing similar work, until one day out of the blue he found out that scientists on the other side of the world were working on the same problem: whilst relaxing at his holiday house he had received a phone call from the Patent Office in Gernmany regarding an Australian group who had just filed patent on a staph vaccine in relation to CFS. He couldn't believe his ears as he'd been working in the dark all these years on his "own theory" and not understanding the "why" factor - and here an independent group had understood the "why" and were filing for patent. He got Prof Tim Roberts' phone number and being so excited he called Tim straight away (forgetting the time difference) - Tim took his call at 3am! They hope their collaboration can work to benefit more people with CFS in the future.(Jill Booth) [2] ContentsUp your nose!Dr John Whiting, a Brisbane GP with an interest in CFS, writes that his own observations support the theory that staphylococcal infections are implicated in CFS: The coagulate negative staphylococci that Newcastle University has been researching for the last number of years seem to find the human nasal passages to be an ideal location for persisting colonisation ... it is of interest how commonly it is for CFS patients to give a history of chronic sinus infection, nasal congestion, or hay fever, as well as (and perhaps most importantly) secondary post-nasal drip of varying degrees. Furthermore, much more than the average severity of such symptoms is reported by approximately 90% of the patients that I have thus far interviewed. Cultures of the nose for these specific staphylococcal strains is performed easily by swabbing the nasal passages. The majority of such strains that are isolated ... have turned out to be toxin-producing strains.But how is it possible for staphylococci in the nose to colonise the gut, and so affect the overall health of the patient, as described by Gottfries and the Newcastle researchers? The unappealing answer may be that it is swallowed along with the mucus constantly dripping down the back of the throat from the sinuses. [3] ContentsReferences1. ABC's "7.30 Report" on 17 February 1998 2.This information and the quote are from from Jill Booth's excellent account of the Conference in Meeting Place the magazine of the Association of New Zealand M.E Societies (ANZMES). She wishes to remind people she is a PWC, not a doctor, but says: "I am pretty sure of my facts as I found Gottfries so enthusiastic that I jotted down lots of notes during his lecture ... His story fascinated me." 3. Dr Whiting Summarises the Latest Research on ME/CFS - from EMERGE, the journal of the ME-CFS Society of Victoria Inc, Summer 1998. Moira Smith 1998 ContentsFurther informationThe paper that Carl Gottfries delivered at the 1998 Sydney CFS Conference was called: "Effects of Staphylococcus Toxoid in Patients with Fibromyalgia and Chronic Fatigue Syndrome." Medline has the Abstract of the paper "Effects of staphylococcus toxoid vaccine on pain and fatigue in patients with fibromyalgia/chronic fatigue syndrome" by Andersson M, Bagby JR, Dyrehag L, Gottfries C (Pain Unit, Kungalv Hospital, Sweden) from the European Journal of Pain 1998;2(2):133-142 One of the Newcastle studies reported at the same Conference looked at the amount of coagulase negative staphylococcus (CNS) in respiratory and genitourinary samples from CFS patients. The results showed "a significantly higher prevalence and multiple carriage of four or more strains of CNS in patients with chronic pain than with control subjects"; and these staphylococci were producing "membrane damaging toxin". ("Alteration of the Bacterial Microbial Flora in Chronic Fatigue/Pain Patients", by H L Butt, R H Dunstan, N R McGregor, T K Roberts, M Zerbes, and I J Klineberg) Another study showed that presence of the staphylococci "was associated with increases in pain severity ... irritable bowel, palpitations, muscle fatigue and recurrent low-grade fever consistent with the symptom profile of fibromyalgia" and concluded that "these organisms may have a major role in the aetiology of chronic muscle pain." (Toxic Coagulase Negative Staphylococci are Associated with Changes in Urinary Organic and Amino Acid Excretion in Chronic Facial Muscle Pain Patients by N R McGregor, H L Butt, R H Dunstan, T K Roberts, M Zerbes, and I J Klineberg) A related paper delivered at the Sydney 98 Conference was: "An Association of Membrane-Damaging Toxins from Coagulase-Negative Staphylococci and Chronic Orofacial Muscle Pain" The Newcastle research abstracts from the Conference can also be found at the CPRUIS (Newcastle University) website. There is also a slide show on the CPRUIS site called: An association of membrane-damaging toxins from coagulase-negative staphylococci and chronic muscle pain. Since this article was written, pathology testing for staph has become available through Bioscreen - see my article or the Bioscreen website for general information about the testing program, and background info on the Bioscreen website for details about what the test results for staph can show. Dr Neil McGregor reported to the Sydney 99 Conference that a study of 29 myofascial pain patients and 34 controls found "a strong relationship found between the carriage of coag neg staph and increase in myofascial pain scores", and Hugh Dunstan said that "13 species of coagulase negative staphs were identified in patients, from nasal and genital swabs". Regarding treatment, Dr John Whiting said during the Conference that he had a 95% positive response to intranasal bactroban for those with positive coagulase negative nasal swabs, but "Symptoms do relapse if the course treatment is inadequate." (Information and quotes are from Dr Vallings report) The Newcastle team made a presentation at the Brussels CFS Conference in September, 1999, and again mentioned the association between staphylococcal membrane-damaging toxin and chronic fatigue and pain symptoms: "90% of 73 patients reviewed were found to be positive for the membrane-damaging toxin with almost nil being found in controls. Pain severity was found to correlate with level of toxin and significant alterations in urinary metabolites." See Dr Ros Valling's report from Brussels. ContentsMore recent research abstractsThe Development of Laboratory-Based Tests in Chronic Pain and Fatigue: 1. Muscle Catabolism and Coagulase Negative Staphylococci Which Produce Membrane Damaging Toxins Journal of Chronic Fatigue Syndrome, Vol. 7(2) 2000, pp. 53-57 The carriage of toxin-producing coagulase negative staphylococci (MDT-C0NS) was strongly correlated with the catabolic response and pain severity. ..... An hypothesis has been constructed where an occult pathogen, such as MDT-CoNS, may be an aetiological agent contributing to the sustenance of a chronic fatigue/pain disorder, a comorbid pathogen." AbstractThe Biochemistry of Chronic Pain and FatigueJournal of Chronic Fatigue Syndrome, Vol. 7(1) 2000 pp. 3-21"The toxin producing staphylococci appear to be a co-morbid pathogen that contributes to CFS patient morbidity." AbstractContentsGo to [ top of this page ] [ Library contents page] [ Australian info ]BACK HOME to the Canberra Fibromyalgia and Chronic Fatigue Syndrome Page http://www.masmith.inspired.net.au/ Webmaster: Moira A Smith last revised 12 March, 2001


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## Debbielee (Jun 14, 2000)

Well i have always believed that FM has a bacterial or virial basis.Very interesting. My recent head mri showed that my sinus are inflamed. Hummmmm never had sinus infections till the last few years.I wonder.Lets do our own survey.My list.1. IBS for ever.2. H-plori (stomach--digestive)3. Diverticulitus4. Shingles5. sinus infections6. Lyme7. Last but not least--FMPlease anyone else that remembers significant bacterial and or virial infections. Please post. I am really curious about the role of these BUGS in our condition.Debbie


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## Nina M (Feb 10, 2001)

Debbielee I had the nasal problem for four years, during which time I had all sorts of problems typical of FM/CFS. Was never, but absolutely never without a hankie in my hand, yet not one doctor ever took any notice or thought it odd. My problems all started with a very acute viral infection. Sick, real sick for 7-10 days. Had metobilic profile done by these researchers who said "you are carrying bacterial infection". Did the nasal swab and yes Coagulase Staphylococci, got treatment and nasal problems disappeared. Had endoscopy/stomach biopsy, yes H.Pylori, got treatment, severe gastritis disappeared. This despite the fact that I had had dozens of blood tests during the four years which said I had no infection whatsoever and was totally normal. However ALL of my problems have not disappeared. What does occur to me sometimes is that if this bacteria does in fact drip a toxin into the gut then it can disrupt the microflora balance and clearing the infection does not necessarily right the gut flora that has already been disrupted. I have another unusual treatment coming up sometime after Easter I hope, (have been waiting forever) its aim is to right microflora imbalance, EVEN WHEN GASTRO'S CANNOT DETECT EXACTLY WHAT IS OUT OF WHACK. So keeping fingers crossed and will keep you posted.


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## Guest (Apr 11, 2001)

Well for what it's worth my FM all started back in '95 when I was diagnosed as having mycoplasma pneumonia. Before that happened I never had any of the symptoms that attend this FMS/IBS thing. I know that isn't exactly scientific evidence of a true linkage but I thought it was certainly an interesting coincidence.


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## Debbielee (Jun 14, 2000)

Thanks Keeragh,Doesnt have to be scientific --just your own experience.Debbie


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## Nina M (Feb 10, 2001)

Keeragh to the best of my knowledge "mycoplasma's" are one of the infections they look for in FMS/CFS and more particularly in Gulf War Syndrome which bears a surprising resemblence to FMS. I was tested myself but was negative. "The Nicholsons" work in California focus's almost exclusively on "mycoplasma" infection (found inside the white blood cells). So when you say "mycoplasma pheunmonia" I'm assuming it is more or less the same thing, but I could be wrong. Two other infectious agents that are screened for here in Australia, are the Chlamydia virus (now implicated in heart conditions) and Ricketsia. That is in addition to screening for CMV & EBS virus's.


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## Guest (Apr 13, 2001)

I have fibro and lupus and after reading and checking out about the mycoplasma theory, I decided to get tested and tested positive for mycoplasma pneumoniae. Everyone has mycoplasma in their bodies but some people have alot more than they should and that can start a chain of problems which leads to the health problems and so on. Normal levels of mycoplasma are 0-200. My first blood test was 670, second blood test (after being on zithromax, 250 mg everyother day, was 477. Now, my third blood test showed 995 but the doc has switched me to doxycycline. I am now back on the zithromax and I have been herxing which means the antibiotic is working away at those nasty mycoplasma buggies. It's not alot of fun but at least I know the antibiotic is working. I truly believe that mycoplasma infection is behind most of our illnesses. Check out www.roadback.org


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## geomv (Aug 9, 1999)

thanks to all for your input and information. as I read everyone's replies, it came to mind that are many diagnoses of CFS/FMS, with not one, but many causes. I find that very interesting, except for the fact that my dr. chooses to do nothing about my problems; it doesn't matter what is wrong with me when I go see her, "it's my Fibro", I really get sick of hearing that with no attempt to help me, so I suffer. I have been very fatigeud this week, I had my mom in the hospital last week, this week we found out she has a growth on her right lung. I've been so worried about this, and she is sick over it, she has a CT scan next Wednesday. It has really stressed me out, I am her care taker, that's not real good with the way I feel most of the time. I try to be positive, but it's hard when I feel so lousy. This fibro is very complicated and I wish more drs. would make an effort to find out more about it. Thanks so much again. Georgia


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## Guest (Apr 13, 2001)

Georgia - you raise an interesting point here about Doctor's attitiudes towards FM. I have experienced similar with a few GPs and also physiotherapists. Some treat it like the common cold, which, because we have no known cure for, we grin and bear it and for most of us, the world appears to have stopped looking for any cure. It makes me very cross when medical people adopt the attitude of "Ah well that's just down to your Fibromyalgia - nothing we can do there.." What a cop-out! It's like saying, because we don't understand it, we'll pretend it's not there. Keeragh


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## Nina M (Feb 10, 2001)

Geomv, you are probably correct in saying that FMS/CFS symptoms have "many" causes. But possibly only in so far as it relates to different infectious agents. There are any number of different viral/bacterial agents involved in these syndromes. In the case of a viral agent detecting them is a minefield and the virus can be gone or dormant, yet the damage has been done. What would seem to be happening in many cases, I don't know about all, is that the metabolic pathways within the body are permanently disrupted or damaged. I have a sneaky suspicion that the base problem lies in the GI tract, even where there are no obvious bowel/stomach problems, though these problems do invariably manifest themselves at some stage. So much of the chemical synthesis necessary for good health takes place in teh GI tract that even a small disruption can cause problems. There is much good work being done by some researchers but it is painstakingly slow. Apart from making the viral/bacteria/microflora connections, they are linking FMS/CFS/IBS/MS in this regard. Much recent work also points to intestinal microflora imbalance & severe, generally unrecognised parasiste infection in autism, ADD & AHD. Might sound far fetched, but perfectly true.


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## Nina M (Feb 10, 2001)

Would also like to add a seperate comment on doctors attitudes. Experienced myself, doctor after doctor, after doctor. Came to the conclusion if they didn't acknowledge it, then they didn't feel obliged to do anything about it. Or as one doctor golfing acquaintence of my partners said to him one day during a round of golf, "Chronic Fatigue Syndrome, I keep well away from it, too hard and we don't know what to do about it. For myselr I now have one, two if I includ my specialist as well as my general medical practitioner willing to work through every possible avenue with me. There is a very interesting article on the "Politics of CF/CFS/FMS/ME with they why's and wherefores of the different acrynoms, which possibly goes a long way to explaining the different attitude of some doctors.


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