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new information for fibro- ever heard of mycoplasmas?
8 Replies
midnight-train - April 1

I'm new to the sight and have had fibro since 2001. This past year has been extremly difficult for me. I have the worst luck with doctors and hairdressers! I'm not a doc jumper since I've only had 3 since being diagnoised, however it seems to be the same with them, take this antidepressant, exercise more, eat healthy, blah, blah, blah. As if every human sick or not needs to be told to live a healthy lifestyle. so, then I threw myself into research, and found some interesting things I thought I'd share. One is the connection with fibro and lymes disease, and just today the globe and mail in B.C. reported a possible connection and the government is spending 2 million on research. I don't know if I have lymes dx but I'm willing to try antibiotics over antidepressants and that's my new mantra for the next doctor I see! check all the links to get the fuller picture if you're interested.
Since URLs and email aren't allowed you will have to google the names

B.C. Globe and mail- March 31, 2011 fibromyalgia and lymes or Vancouver Sun

Canadian lyme disease foundation: lymes and fibromyalgia

Phoenix rising.com - has some good information and links on XMRV - another study to find link of mycoplasma infection

Mycoplasma infections study done by the American Association of Pysicians: check medical sentinel-
mycoplasma infection and chronic illness
Medical Sentinel 1999

Immunostimulation in the era of the metagenome:
this is very interesting.

As not to overwhelm or repeat what's already known I'll sign off, hope is out there and I'm going to find it!

 

January - April 1

midnight train - hello and welcome! This is right up my alley! I've had fibro for decades and refuse to be fed antidepressants and anticonvulsants - bad side effects for me! (They work for some people, and that's great, for them -- but I suspect there are several different diseases lumped in to the "fibro" category, and mycoplasma infection may be one.) I've been researching too and have found the connections and overlaps with fibro symptoms and Lyme, and certainly the XMRV and mycoplasma info is intriguing.

Have you read about weaponized mycoplasma being more virulent - and possibly being accidentally released from government labs and getting into the insect population; and also, it being the factor in Gulf war Illness? Supposedly, weaponized mycoplasma was given to Saddam and he used it. (Maybe that's what they were looking for?) Also, mycoplasma can be combined with viruses or bacteria to produce supergerms like mosaic viruses - and they are very hard to diagnose and treat.

Oslers Web is another good source of information. Wall Street Journal has good articles on chronic fatigue and XMRV. Online forums about chronic fatigue are good too.

I had the bull eyes rash years ago - but my Lyme test came back negative. NOW I learn that you sometimes need 3 or 4 tests to get diagnosed, as the organism goes into "hiding." There are some very good online forums about Lyme Disease. From what I've read, it takes 6 mos. to 2 years of treatment with doxycycline - and even that may not knock out the organism. And lengthy antibiotic treatment causes its own problems!

Please keep posting your information. I'm interested in reading it, and I know others are too. If you go back and check threads on here, you'll see that we've been discussing some of these issues. Thanks for the info!

 

axxie - April 2

Good to treat acne, also very bad report on that, there's a lawsuite going on for people who took tetracycline for acne, they became depressed and had other problems.

You are on the right path, but the problem is lack of funding to study fibro, that's where the problem lies, it just doesn't produce enough money for pharmacies to fund and it's not in the world organization radar.

Sometimes I feel that we are treated like we were all a bunch winers and junkie, if they only knew how it huts.

As for the antidepressant and anticonvulsants I have bad reactions, and the only way you find that out is after you tried it and spent money getting a prescription.

By the way, I have new packets of cymbalta which are gathering dust, I know we are not suppose to give them to others or sell them, but I hate the fact that there are some who need it and can't pay for them.

 

January - April 5

I hope if anyone has a bad reaction to any drug, they will report it to the FDA. I know lots of people who can't tolerate drugs, but don't report. It's crucial that we DO let the FDA know how things work in the real world. The drug companies will NOT report these things, we have to.

Only our complaints will light a fire under the drug companies and research labs to find new and better drugs to treat this condition.

 

midnight-train - April 5

Hi January,
Thanks for your quick response and warm welcome!
I've felt very alone in my recent discovery of information and it's a relief to feel others out there are looking for answers just as I am.
From what I gathered from this sight in what I’ve viewed you seem to be very knowledgeable, and kind. It’s appreciated.

One of my strongest fibro symptoms is the 247 headache. I wake with it - go to bed with it and the time I get some peace is when I’m sleeping. Concentrating makes my head hurt, talking makes my head hurt but I was so encourage by your response, I wanted to reply ASAP but my headaches prevented me from doings so until today.

So, from what I’ve gathered government lab “accidents” happen often and go widely unreported due to there funding, or grants being at risk. A good example is the Texas University, but that’s only one lab. I’ve found others, and when WHO (World Health Organization) puts out documents on the proper standards to contain contaminates in BSL 3 and 4 labs you know it happens more than its being reported.

The GOA put out a report stating the recent proliferation of these labs are cause for concern, and with little to no oversight public safety is being compromised. They are making biological weapons and they make no bones about it, (for our safety, Ha!)
The information out there suggests in the 1970’s Canada sanctioned the US to spray Winnipeg with a cancer causing agent.
The way I see it- the number of people being infected is on the rise and all of the new syndromes and diseases in the last fifty odd years seems to have multiplied.
I’m no scientist but I do believe we are sitting ducks. I heard one theory that suggest the new world order has plans to depopulate the world, thus less of the “lesser” people using up the worlds natural resources, it’s an old but interesting thought.
The reason for my knowledge thus far is my drive to find out why, how, and when I got Fibromyalgia and what course I can to rid or decrease the symptoms. It hasn’t been proven to have any connection to genetics therefore I believe it was in some way transferred.
I, as others on this sight have noticed a steady decline in health since my original diagnose and that to me is what’s most bothersome. My rheumatoid factor has increases and the pain this year was devastating and all I know is I’m mad as hell, and sick and tired of being sick and tired. I was wondering if this web forum could do a poll on years with fibro and how each year has increased, or decreased their symptoms of pain. It’s obviously not an easy task and it would take considerable time, but I thought I’d throw it out there.
I also wanted to comment on your Lymes test, they have been doing more reserch and from what I understand ( I could be wrong, fibro-fog + lots of info lately) they need to take spinal fluid test to get a better result. I'll check on that again, and let you know but they have said Chronic Lymes is hard to detect, but that doesn't mean you or I doesn't have it.

 

midnight-train - April 5

Hi Axxie- I know your pain and I too feel no one is listening because we aren't in a wheelchair or wear bandages like mommies we must not be all that sick. And Yes,you are right Doxycycline and tetracycline are antibiotics used to treat acne, but the regiment for Chronic Lymes is in it's stronger form and quite intense as over a course of IV treatments plus other antibiotics and immune supplements are combined and work together to rid the body of mycoplasma infections.
It's a heavy regiment as it takes from what I understand at least 18 months plus. It's not a cure all, but I willing to try it because I'm sick of doctors treating the symptoms and not the cause. I don't know if I have Lymes or not but I'm not willing to take brain altering, body numbing meds and destroy my liver with masking meds till I'm convinced that I have no other options. I strongly believe it's in the antibiotic realm that will help me (and that's just me).
This is really why we are fibro-kin bringing info to each other, disscusing thoughts, and our personal experiences to help fight this "whatever it is" that we have in common. There are people out there fighting for us and making small changes. I encourage you to look at the Globe and Mail B.C. because the government there is putting two million into reserch to see if theres a Fibro-Lymes connection. Chin up and face forward as I always say, it helps me get through, take care and till energy serves me,
the midnight train.

 

January - April 6

Hey midnight train - I'm concerned about your constant headaches! That sounds awful! (I had migraines in my younger days, and a bad migraine is special kind of pain "experience!") Do you have any idea what is causing your headaches and have you checked with a doctor? Others might know better, but I'm not aware of a "constant" headache being a typical fibro symptom. I really hope you get that looked at if it is bad enough to interfere with your daily life.

As I've said, I think fibro is a dumping ground for "you hurt and can't sleep and we don't know." (Which is not to say there isn't a real FMS syndrome, I suspect there is.) But I think, because our symptoms are so variable, there are probably a number of different disease entities - hard to diagnose, not well-understood diseases, maybe some rare ones, maybe some new ones - all being dumped into "fibro" with no further investigation. I think some forms of fibro do run in families. This could be due to genetics - or it could be due to an infectious agent that is passed along in the family. And then there's the pain issue: that seems to be a common thread - as well as the lack of adequate treatment in so many cases. Nobody understands chronic pain unless they've been there.

Where we all need to start is with a really good diagnostician - not sure if they even exist any more. I think that would be a wonderful new "specialty" for medicine - differential diagnosis. As it is, most of us end up on a merry-go-round, one specialist to the next - and they are so specialized, they can't diagnose much else than their specialty. It's a huge waste of money and time. And very frustrating for us!

Definitely, a lot more research is needed, and by getting angry and complaining loudly, we may get more. (I don't think this forum is set up for the type of polling you suggest - but it's a good idea and maybe you could find another place to do it. Maybe a blog?) There are other online forums, like for chronic fatigue and Lyme, where I think they gather more research-related material from members.

One of the most frustrating things is that most doctors are taught that fibro patients are depressed, and the pain is just part of the depression. (Who wouldn't be depressed if they felt like this and couldn't get better? Talk about a vicious circle!) Because there is such a huge stigma still attached to anything perceived as "mental illness," I believe a lot of people in the fibro community are dismissed by certain doctors. (Can't you just see their eyes change when you say you have fibromyalgia?) If they would give us the time of day, they might learn something. The most telling thing of all is that one of the most heavily marketed "treatments" for fibro is… an anti-depressant… and it doesn't even work for lot of us! You'd think somebody would look at the math.

Well, I've had a long day, I hope I'm not ranting, but I suspect I am… LOL

Sorry you feel bad, but thanks for answering, and glad you are still up for investigating information and fighting for better treatment. On good days, I fight too. It's rough for a lot of people who are struggling with heavy work and family responsibilities along with serious pain and fatigue to have any energy left over for that. So if you can do some research, I'm sure we would all be interested to read what you learn. But first, try to get some relief from those headaches and feel better!

 

midnight-train - April 22

January- thanks for listening, and thanks for your dedication to this site, it's the only forum I've ever joined.
My headaches have been the constant thorn of all my symtoms of fibromyalgia, and all the doctors I've seen so far have said is that it's common amoungst fibro sufferers and since it's on going and I haven't dropped dead they see no reason to investigate. I haven't had any luck with doctors but I'm still going to try, wish me luck. I'm going to Toronto next month to hopefully get an appointment with a Lyme's literate doctor, we will see how that goes???
Take Care.

 

January - April 22

I have not heard that constant headaches are a fibro symptom, and would be interested if anyone else has that symptom? I'm sure somebody does, but I don't think it's very common.

I would tend more towards wondering about Lymes - or some kind of encephalitis, bacterial or viral - that could bring on brain fog as well. Or cluster headaches which are awful and mysterious. Maybe food allergies too. BUT, I'm not a doctor….

So… wishing you the VERY best luck with the doctor you are going to see!

Also, please google "Dominie Bush" - she has a very informative and comprehensive website with a lot of info about fibro, including infectious agents.

 

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