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Just Curious


I was wondering how many of you, who have either a fibromyalgia or Chronic Fatigue Syndrome/M.E. diagnosis works or worked in the medical field and/or have family members who are in the military... or live near a military base ?
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Avatar universal
Latest results... very interesting ! Thank you to everyone who has voted.

33% (12) I work or have worked in the medical field
22% (8) I have military connections
11% (4) Both of these apply to me
33% (12) None of these apply to me

36 Members voted
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535822 tn?1443976780
I was particularly interested in your post and comment regarding electric sub stations, as I am definatly sensitive to electricity,google EIR  (Enviromental illness Resource)
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Avatar universal
You can go on to the Website "U-Tube" and search Prof. Nicolson and watch some short videos on some of his presentations. They are very interesting.  I agree with VaBreeze - There definitely is a concerted effort to down-play the seriousness of these illnesses.
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Avatar universal
I agree with you. Unfortunately it was politics who downplayed the seriousness of lyme disease (IMO) and questioned whether Gulf War Syndrome was real... when they knew all along how to treat it. And now politics involved with Chronic Fatigue Syndrome and fibromyalgia.

Well the results so far certainly are interesting and go along with Prof. Nicolson's studies:

32% (10) I work or have worked in the medical field
22% (7) I have military connections
12% (4) Both of these apply to me
32% (10) None of these apply to me

31 Members voted
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Avatar universal
Actually, I feel there has been a 'concerted effort' to down-play the seriousness of all of these illnesses.  They are all linked by mycoplasmas in some fashion.

I had also read that there is no application used for the reporting of 'rare' disesases.  One can report and track CFS, Lyme, FMS and others, but when it comes to particular 'rare' disease (that may involve biochemicals) there is no system used.  I find that disturbing.
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Avatar universal
"Why is it so hard for us to find doctors who are more open-minded and will listen to us?"

Lyme, fibromyalgia, CFS and others are often treated horrible by our medical professionals and are often discriminated against. (the truth doesn't hurt... just our reaction to it does).  I believe the problem is POLITICS. Of course our employer's long term disability carrier doesn't want to believe these conditions are real.

One thing I highly recommend to everyone is to start calling and complaining to your health insurance company. I believe our health insurance company would save a ton of money if they listed lyme & CFS/fibro practitioners on their website or forced these physicians to get off their ______s and learn how to diagnose and treat these conditions !

This is what Prof. Garth Nicolson had to say about the politics in lyme disease:


PROF. NICOLSON's RESPONSE:  I think that the medical profession has to get away from the politics of Lyme Disease before any real progress can be made.  There has been a concerted effort in mainstream medicine to down-play the seriousness of Lyme Disease, especially chronic Lyme Disease.  One of the oldest professional societies, the Infectious Disease Society, has done a major disservice to patients with LD by down-playing chronic LD.  Basically the traditional ID societies although excellent with acute infections have traditionally left chronic infections to other specialists, such as rheumatologists.  This is finally being rectified, but it took a major lawsuit to force the society to recognize some of the approaches used by Lyme physicians and the International Lyme and Associated Diseases Society (ILADS).  


link to discussion (see response to cindy903): http://www.medhelp.org/posts/show/648144
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Avatar universal

Lyme disease is something that I think ALL of us here should be either tested for or treated for (because the treatment I'm on for CFS is the same as lyme).

The only problem with lyme disease is that the testing is often inaccurate. The preferred test for lyme is:

Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s). Recommended Lab: IGeneX Laboratories of Palo Alto, CA (http://www.igenex.com/).

For additional information on tests to have to help diagnose other infections (such as mycoplasma) ---- there are very few labs that do this testing. The regular hospital labs do NOT normally do the testing we need... they check for other mycoplasmas, but not the one that most CFS patients test positive for. Anyhow, for more information see:

http://www.immed.org/illness/clinical_testing.html
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Avatar universal
     I have military connections (4 years in the Navy in the 70's) but the link was so long ago - over 30 years it might not have any bearing. Besides, I was in during peacetime, so the chances that I might have been exposed to anything harmful are slight.
     I've done some research, and I think I may have found a different link: I've been hunting and fishing ( fishing only in the past 10 years) most of my life. I spend a lot of time camping in the summer and Ohio has one of the largest deer populations in this part of the country. Do you see where I'm going with this? LYME DISEASE!!! I've finally found a doctor who will listen to me and not dismiss everything I say. He ordered the test for Lyme disease and I had the blood drawn last week, so the results will probably be in next week.
    I'm surprised that, given the deer population in this county (usually 1st or 2nd in deer taken every fall in the state) that doctors aren't better educated about Lyme disease, because my PCP had to look up the symptoms, which match mine perfectly.
     Why is it so hard for us to find doctors who are more open-minded and will listen to us? Life would be so much easier if there were more like the one I found who will speak to me and not talk down to me, and will actually listen to what I have to say.  I guess I just got lucky and found one of those rare ones.
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Avatar universal
I was studying medicine when I got sick.
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Avatar universal

I'm getting my life back... slowly but surely. As Professor Nicolson said, treatment can be slow. But in my opinion and from personal experience, the pay off is HUGE.

My muscle aches are the latest symptom that is disappearing ! ; ^ )

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Avatar universal
Well I can say I believe in Dr. Nicolson's research and I have had the antibody test for one mycoplasma species and I do have antibodies to it, so mycoplasma infections are real and do exist. I have worked in the healthcare field and social service field, probably been exposed to more germs than one can imagine. I also live 5 min. from a VA Medical Hospital. My area is full of people with Fibro and other strange autoimmune diseases. We also have Lyme Disease. There is definitely a link. I will try anything to give me even half of my life back.
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549511 tn?1271775930
am a ex army wife!! Interestesting eh!!
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563571 tn?1232491190
The questions don't apply to me, but a couple of years before I started having really serious problems, I live only 50ft from an electrical sub-station.  It took weeks to get used to living with the humming sound it made.  
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Avatar universal
That news about the genetic "link" and I should say link instead of cause, was a big story about three years ago. You can do a search on it. I do find some credence in what you are saying and I hope the treatment you are receiving works for you. If it helps only some of us, that would be wonderful. As far as Dr. Nicolson is concerned, I am grateful research is being conducted on these types of infections and wish him much success in a cure. I also wonder why his treatment hasn't gone mainstream? At the same time, I believe there is a possibility (at least for FMS) that there may be multiple causes and probably includes a genetic predisposition.

A friend of mine, diagnosed with CFS has done well with alternative medicine treatment. He focuses upon the adrenal glands and ridding the body of toxins. Of course, this hasn't cured her but she claims it has helped. Along the way, she had all her amalgam fillings replaced which was an expensive ordeal. She said she did not notice any difference after that but felt better that it had been eliminated.

There does seem to be alot of nurses with FMS and CFS. Are you saying that it is due to infection? I'm just not totally convinced that is the only reason but who knows, it may be one of them. There are other occupations outside medical and military that have similar exposures. That is why I asked my original question.

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Avatar universal

This is why Prof. Nicolson told us that we needed to educate our physicians about this. If I remember right... he said that they didn't teach this in medical school (and he taught medical school). Physicians knew about mycoplasmas, but weren't sure how to kill them, etc. Well now they do. There are various treatments to kill L-form bacteria and other pathogens. I feel that these treatments are less risky than taking antivials, which will lower your immune system.

I'm also happy that Prof. Nicolson mentioned that ticks carry numerous pathogens. Dr. Oz said this on the Oprah Winfrey show. Of course Dr. Oz is now learning about lyme disease and he doesn't run from this controversial illnesses... he tried to learn about them. He also gets a lot of his information from the "alternative medicine" practitioners.

; ^ )
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Avatar universal
Yes, it seems that many have the multiple infections.  It does make sense (while I don't like it one bit and it makes me very angry at what has been done).  

We both know why physicians know little, now don't we?  Who would pay for all of this treatment?
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Avatar universal

I agree ! I'm sure that those of us who are chronically ill and have one of these "new" illnesses with multiple infections.... Prof. Nicolson's research and the facts make sense to us. Look at people who have lyme disease.... one little tick bite from an infected tick and they have pretty much the same symptoms that we have !  (light bulb moment... LOL!)

Most physicians know very little, if anything, about these mycoplasma infections. There have been studies linking mycoplasma infections to cancer (that is probably why we have a higher cancer rate).  Dr. Nicolson is an expert on these infections and he's also a retired Colonel. His family has been affected by Gulf War Syndrome and CFS.... this man is passionate about finding the truth and as a result, numerous people have recovered from their chronic illnesses.

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Avatar universal
Great video PlateletGal.  I've forwarded it to my friend who has RA (her sis has MS).  

Dr. Nicolson has hit it right on the head.  To bad he wasn't running in this last election :-(
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Avatar universal
Patsy,

Prof. Nicolson talks about how the majority of lyme patients have mycoplasma co-infections. Here is the link:

http://www.viddler.com/explore/tamiduncan/videos/15/
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Avatar universal
http://www.patentgenius.com/patent/5242820.html
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Avatar universal
I have worked with 3 R.N.'s who had a fibromyalgia diagnosis. One of them is currently disabled, another one ended up having kidney problems (I'm assuming it has to do with vitamin D dysregulation) and the last one I'm not sure (haven't seen her in years). I also worked with another nurse who had unusual health problems (strange rashes, etc.) and she swore that she had her mystery diagnosis after her ex-husband returned from the Gulf War --- with GWS that is.
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Avatar universal
Well I think our poll numbers speak for themselves. Wow !

33% (4) I work or have worked in the medical field
33% (4) I have military connections
8% (1) Both of these apply to me
25% (3) None of these apply to me
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Avatar universal
I've been a nurse for over 20 years.
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Avatar universal
http://www.gulfwarvets.com/article24.htm

Dr. Nicolson's (and others) findings regarding FMS/CFS/GWI/HIV and more.
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