i was also diagnosed with fibro, but refused to accept it as a diagnosis.
i knew it was just a fancy word for "we don't know what's causing your problems."
i'm trying to convince a very sweet woman who has lupus, fibromyalgia, and MS to at least watch "under our skin" ... she was tested for lyme a while ago, but the doctor said it was negative.
i really believe she probably has lyme, but i want her to come to the conculsion on her own.
i know with me, everyone had a different idea of what was wrong with me, and everyone thought they were right.
i have a feeling these fibro patients on these boards have been pulled in a million directions, and just can't handle dealing with it right now.
it took me a while to look into lyme, because i read about how impossible it was to get a positive test, and i accepted when doctors told me i couldn't have it.
you don't realize how unreliable doctors are until you get sick. you assume they have your best intrest at heart
i hope these fibro patients see the light one day... i think they have just been through a lot, and feel like they can't handle any more diagnoses...
Posts: 442 | From usa | Registered: Oct 2010
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posted
Haha, map - li'l ole pesky me...most fibromites seem to be looking for palliative treatments - anything to reduce symptoms -
Thx for your post, Klutzo - very enlightening, and very serious - fibro is not just a label, but a cover-up of a progressive illness - are you able to get medical help with your pancreas situation?
Yes, I know some forums are more open-minded, and I happen to be in one where I can actually chat about it and we have discussions. Not sure anyone is convinced that their fibro is Lyme yet, but at least we can talk about the details. I do say that this is my story, that MY fibro turned out to be Lyme.
Am wondering, since you've been there with the resistance part of it, whether you would have any interest in attempting to talk with them there?
I saw that there's several moderators there. One let me pass, with a little discussion, and the next one locked the post, saying "this is the fibro board."
Katie - your comment about thinking doctors have your best interest at heart - I went back to a rheum I had seen early on, to see what he would say when I reported it was Lyme. He didn't want to hear. I think most rheums do not have our best interest at heart.
So any more ideas about how we talk with people if they feel they can't handle one more diagnosis idea?
As Klutzo said, a developing symptom caught her attention - so did mine, to the point where I was actively asking online about them, and I was scared - I was dealing with lipomas and major, major chemical sensitivity by that point - maybe for many, the awareness isn't going to happen till much later?
The good news about finding out is we have the chance to address many of the problems, although it isn't easy and we have to search around for answers.
I found the answer to the lipomas on the dercums forum I was in, although i don't have dercums - but they were doing research and told me to drink noni juice and take grapeseed extract capsules, which completely stop lipomas! And it looks like I'm going to be able to detox with FIR.
I mention these symptoms here, because if fibro people go on and on not knowing about the possibility of Lyme, everyone is going to get pretty sick.
I tried to find as many of the old fibro friends as I could when I got diagnosed. The ones I was able to find knew by then that they had Lyme, and some had co-infections.
It's so bizarre to look back in hindsight at those fibro support groups, because now I can see the symptoms that belonged to each of the infections.
Back then, the doctors themselves didn't know what they were looking at. It wasn't until the internet that we got to all find out.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
i think it just takes time for it to click for some people...
i met a man whose daughter is bedridden from cfs and fibro... his wife was one of the first people diagnosed with fibro, and wrote a book about it...
he tried to tell me i probably had fibro and cfs instead of lyme. yet i can walk again with anti-biotics, and his daughter is laying in bed getting worse her husband has to carry her to the bathroom everyday
i really resent most doctors. they would rather let patients die than give them a proper lyme diagnosis it's outrageous!!!
anyway, i think the best way to get through to these fibro people is just by sharing personal experiences, without suggesting they have lyme.
i'd mention how i went years thinking i just had fibro, but once i started treating for lyme, i noticed a major improvement!
when i come across these people, i just act like they do have the diagnosis they claim to have, but that there may be something bigger causing their illnesses.
Posts: 442 | From usa | Registered: Oct 2010
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Robin123, Yes, I take prescription enteric coated enzymes, which cost $900/month. The sales rep at my GI doc's office gives them to me free, otherwise I would already be dead, since there is no way we can afford that, and we are not quite poor enough to qualify for help with meds. I also have to eat very small meals and a very low fat diet. The problem of my pancreas not making any enzymes, known as EPI for short, still reduces lifespan by 20%, and at my age, that doesn't leave much. I am suffering so much from my other symptoms that I'm cool with it.
As an aside here, a 25 yr. retrospective study of CFS found pancreatic insufficiency to be the #3 cause of death in CFS patients. (The Cheney study, not the Hyde study, I think). In Melissa Kaplan's excellent and exhaustive list of Lyme symptoms, she lists the pancreas not making enzymes anymore as a potential Lyme symptom. I don't believe in coincidence.
There are several other problems that could beat my pancreas to the finish line, and I hope my damaged heart combined with my dominant sympathetic nervous sytem will win the race, since my husband would go bankrupt if I die slowly. A massive stroke would be my preference.
As to going to that resistant forum, no matter how sick I am, I must do all the paperwork for my husband's corporation, and that plus caring for a chronically ill cat, and taking care of the house is already more than I can do without making myself worse.
I rarely even get here to LymeNet anymore. It is getting so difficult that twice during the past month, I've locked myself in the bathroom and bawled my eyes out for over an hour because I don't have the courage to kill myself. So, I think I will have to pass on incurring anymore stress than I already have and leave the battle to those who are relatively healthier.
- - - - - - - - - - - - - - -- - - - - - --
katiebobatie, I really feel for you, knowing someone who is letting a child get sicker. I feel so helpless watching people get worse like I did.
I have a friend whose brother has Lyme, and as long as he takes his ABX, he works full time and even runs in marathons! Yet, if he misses just 3 days of ABX, he can't even go to work. Nobody will ever be able to convince him again that he has CFS!
Blessings to all,
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I also was given the Fibro dx before realizing it was Lyme.
I believe there was a section in the book "Cure Unknown" where the author describes how the term CFS first came about. If I remember correctly it was during a period back in the '80's when the CDC was denying that LD could incorporate the symptoms commonly associated with CFS & FMS. I don't remember if it was during a formal hearing or LD conference but the argument was "No-those symptoms are related to a new disease called CFS and are not LD at all."
Wish I still had the book to refer back to it....
All we can do for those who have other dx's is plant the seed of possible LD and let them do with it what they will. If we as individuals are able to help at least one person and they in turn are able to help another-we will all eventually get the word out.
However as a very proactice person with my own health and my children's health-it is very frustrating.
I've been trying for almost four years to get a friend to open her mind to the possibilty that her dd's health issues are much deeper than what her Doc's say but she has never been receptive to my opinion. Oddly enough she found a new forum where all the parents where saying the same thing that I've been trying to tell her and now all of a sudden she may be starting to "get" it. (She has something other than LD.)
Posts: 131 | From Nebraska | Registered: Apr 2011
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he is convinced she got these syndromes from chemical exposure.
i asked if she is improving, but he made it clear she's getting worse and worse.
i moved away and will never see the man again, but i hope something i said struck a cord, and he might decide to look into the possibility of lyme.
his daughter sounds just like me before i started anti-biotics.
i worry that many of these fibro and cfs victims will die before discovering what is really wrong with them Posts: 442 | From usa | Registered: Oct 2010
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
My diagnosis for diagnostic code for insurance from my PCP is fibromyalgia. She know I have lyme and treats for lyme.
You are supposed to have 11 of 18 tender points in order to have this phony diagnosis and I have less than 11. PCP didn't test for these but LLMD did.
I would have preferred CFS which I do have.
It seems so dishonest, but this is how they have to protect themselves from being questioned by insurance.
It seems bizarre that insurance prefer a diagnosis for a disease that they don't know the cause rather than lyme, a disease for which the cause is known!
Posts: 1302 | From USA | Registered: Dec 2002
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I also got the trash-can diagnosis of fibromyalgia, given elavil for sleep. The usual routine.
I lived with it for 22 years. I'd rather know the truth any day.
I always wondered what was causing my sx and why I crashed in a hotel room while travelling because I just couldn't go any further.
I heard an llmd being interviewed on the radio, but he was very careful how he described the sx etc. He called it chronic fatigue and said he had a very good success rate at treating it.
Only when I went to see him about my 'fibomyalgia' did he raise the possibility of lyme and sent off the test to Igenix.
He had to be careful. He never mentioned lyme once in the interview because he knew he would be crucified for it.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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