I'm so angry right now!

[jarla]

I had a truly horrible visit with my rheumatologist last month. I posted the account below on a different board soon afterwards. I was upset then. Given that I definitely know that I am positive now, I feel even more angry in some ways. How do we stop this madness?!

My Rheumatologist specializes in Fibro. Unfortunately, all he can see is fibro. I asked a while back about Lyme. He insisted that it couldn't be Lyme; it was definitely fibro. But my symptoms were still vague enough that I went along with it. Since I saw him last, I have developed clearer signs of inflammation. So I wanted to bring up the possibility of Lyme with him again for my next visit, which was on Thursday. I brought my parents with me because they were in town.

We waited for three hours before he saw us. I told him about the uveitis in my eye. He told the nurse to draw blood for "B27." I happened to know what he was talking about, the HLA-B27 gene that's associated with the spondylarthropies and inflammatory bowel disease. I said my GI doctor might have checked for that, let me check. He said that doctor wouldn't have checked. He insisted that B27 doesn't have to do with Chron's. He was wrong. Then we brought up Lyme. He started shouting that it was not Lyme because I his private lab had found it tested negative. Of course, his lab also hadn't kept the specific results of the Western Blot test, which involves interpreting a bunch of values, so that we could see for ourselves. He was literally standing over me yelling at me. I tried to explain that the standard criteria for diagnosing Lyme had been developed by doctors that had not revealed their ties to the insurance industry. The CT attorney general had made a report that I showed to him. He slammed the papers down on the desk in anger. He was truly belligerent. He refused to see the pattern in my symptoms of inflammation. He insisted my knees were not swelling even though another doctor saw the swelling a week earlier. So not only could it not be Lyme, it couldn't be anything else except Fibro. The eye problems were something separate and unrelated to the rest of my symptoms.

[LymeEnigma]

Jarla, it is so unfortunate, but I think your story is all too similar to far too many Lyme disease cases. I think that the medical community has done us all such a disservice; the IDSA/ILADS war and inefficient/shoddy activism, in my humble opinion, are responsible for much of this.

I had an infectious diseases specialist tell me I likely had lupus (that my Lyme titer was a false-positive, because I also had a positive ANA titer) and my tick bite, get this, was a red herring. Got a rheumie. The rheumie said it was fibromyalgia (with the possibility of lupus "developing"), and I should get a good psychologist for the head stuff. Got a psychologist. After several months of therapy, as well as him personally seeing the rashes, the swollen lymph nodes, the swollen joints, etcetera, my psychologist decided he needed to help me find a doctor who would stop brushing me off. Go figure.

I understand your anger, and I'm right there with you. What is going on in the medical community right now, regarding Lyme disease and co's, is downright wrong. It is this "brushing off" that is creating so many chronic cases, and it is pure misinformation that then reclassifies those of us unlucky enough to slip through the cracks as having "fibromyalgia," lupus, or some other equally enigmatic disease. What gets me is just how certain of themselves some of these "specialists" are. Granted, most of us are merely "armchair researchers," but it is a fact that a good number of Lyme activists are college educated ... and I think a good number of us have uncovered enough information, through peer-reviewed material, to prove that we're not all just middle-aged hysterics.

I wish I had a more productive place to offer for you to direct your anger. I wish that there were more roles we could play as activists, but the monster that has become Lymeland, I fear, has taken a good deal of power from our voices. I wrack my brain trying to figure out what we all might do to "make it right," but I'm at just as much of a loss. For now, I think the best thing we can do with our anger is accrue information, push for more research, push for Lyme awareness in our local areas, and push toward an end to black and white thinking. Too many people go around brainwashed into believing it's either the IDSA or ILADS, when we should be looking at what is right and wrong with both sides and pushing a more eclectic and open-minded approach, overall, to Lyme disease.

It's enough to make my head spin....

[jarla]

but it is a fact that a good number of Lyme activists are college educated

My parents have freakin' PhD's in math! And my husband and I both just finished masters degrees to become ministers. Researching literature is one of my strengths. I don't think doctors can cope with losing their priestly roles in medicine. It's like the Protestant revolution, when laypeople decided they wanted to read the Bible for themselves instead of just having the church tell them what it said.

I do plan at least to send this rheumatologist my new results. Doctors need to know that they're messing up.

Also, I'm not even middle-aged. I'm 27, newly and happily married, all trained to launch what I think will be a very rewarding career, and hoping to start a family soon. Would I really make this up?

Also, another realization I had earlier. I was tested for Lyme four years ago. I never saw the results myself because I didn't realize how complicated they were. Now that I've seen what full results look like, I think I understand better what happened. I think back then I tested positive for the IgG but negative for the IgM. The LPN reading them to me thought that meant I had been exposed to Lyme at some point but didn't have it now. I said, well, I had the Lyme vaccine. And we agreed it was probably due to that. Now I know much more and know that the lab was probably not checking the vaccine bands anyway and that pos IgG and neg IgM can still mean active Lyme. I think that's what happened anyway. Maybe it was just a pos ElISA and a neg WB. I should try to get a hold of those results.

[LymeEnigma]

Well stated!

[cobweb2]

Even after I had tested positive by a local lab and my PCP treated me for lyme, for over a year I was sent to 5 other specialists for various problems.

None of them linked my problems back to Lyme Disease. Jerks, all jerks. Finally I made it to an LLMD and was retested-still positive.

Way too familiar story-sad to say.

[nyxie63]

I saw 7 doctors last year alone in the hope of finding an answer to what was going on. To each of them, I presented a full symptoms list and a medical history timeline. Do you think any of them picked up on it?

I'm not even going to bother listing the various (and sometimes rediculous) diagnoses and opinions I received as a result of my efforts. I will state, however, among those were "you're a nervous patient", "you read too much", and "you're getting older, these things happen".

Throughout this time, in spite of getting so many dxs, I somehow felt there was one underlying cause for everything that was going on.

I even asked one doc to test me for lyme in May of 07. She refused, stating I couldn't possibly have it because I didn't have chronic joint pain and intermittent fevers. Silly me to believe her.

In December of last year, I finally stumbled on a list of lyme symptoms, along with the essay "when to expect lyme disease" and knew I finally found my answer.

Went to a local so-called LLMD to get tested. The results came back CDC negative and he refused to treat me. By that time, fortunately, I'd done enough research to know which bands were indicative of lyme on my WB and kept hunting for a "real" lyme doc. Finally found one and have been in treatment since March.

I've been sorely tempted to get in touch with the docs I'd seen. Partly to educate them. Partly to give them a big ol' juicy "NEENER" and an "I told you so". In the end, I realized they're most likely willfully ignorant and it would be a waste of my efforts.

[LymeEnigma]

I get this $10.00 "past due bill" from the ID doc every month; even though I paid my co-pay years ago, his office seems to think that I only paid half of it. Whatever. Anyway, whenever I get a new bill from his office, I get fantasies of writing something nasty on it and sending it back without payment. I want to get it through his thick, pompous head that 1) I already paid him, and 2) he's lucky it's just about impossible these days to sue over a missed Lyme diagnosis, not to mention the fact that he downright refused to test me for babs (and a later test revealed that I did, indeed, have the parasite); I should OWN that jerk for the mistreatment I received from him ... and therefore he's not getting another penny from me.

For some reason, though (I think I fear coming across as over-emotional and doing only harm to my cause) I put the bill aside ... and then I just forget about it for another month. I think another part of my reasoning, however, is the likelihood that there is nothing I can say, no peer-reviewed material I can provide, that would be capable of pulling that man's head out of his ass.

[cobweb2]

Ha Ha- this is the ad at the top of this thread as I read.

"Download Your Angry Ringtone at proboards104.com Instantly; Select your mobile phone company below!"

I may have to do it just to hear what an angry ringtone sounds like. My cell phone currently plays Hallelujia .

edited to add-when I saw the word PAY I just quickly exited.

[enochroot]

Wow, sadly typical story...I had one I.D. come right out at the start and say "Lyme doctors are quacks" even as he would later say "I have no idea what is wrong with you" and he was THE BEST I.D. Doc of the FOUR I saw - definitely an arrogant above most breed the I.D doctor....

It helps (a wee bit) to remember: You are in a "blind men and
the elephant" situation with modern medical practice. You being
the elephant Each specialist sees what he expects to see
and discounts/disregards what doesn't fit. It is a RARE RARE
Doc who gets beyond this

Even my GP whom I like, has "decided" Lyme is "right out"
as a cause for my problems, and while he will let me try
antivirals for (what he believes) is my problem he won't
prescribe any antibiotics
After I try this course of Famvir, I am going back to the LLMD
I saw or the other GP I have seen to try good old Doxy
again ;D
Plus I need to just bite the bullet and pay for the IGENEX
test panel.

I feel for your frustration and discouragement in this
nightmare situation.