posted
Yesterday I went to an infectious disease specialist who said there were NO INSTANCES EVER OF LYME IN THE STATE OF FL PERIOD. He wouldn't test me for anything else. I told him about all of my research on the internet and he basically said that anyone who thinks they have chronic or neurological lyme is obsessed with being sick and they thrive on it and that Igenex gives everyone positives and LLMDS are there to take our precious money and that it is all a scam. I'm new to this and I'm very confused.
I just read a post about burning skin. I can't remember who posted it. That is my main concern. My neck skin/lower jaw skin/collarbone skin burns so bad it makes me want to cry...and I spend lots of time crying about it. Moving my skin, like turning my body makes it worse. It feels like the worst sunburn of your life, tight, burning skin, but no sunburn. This is my main complaint....then after that I get stabbing pains in the sides of my neck. I'm only 27 years old and this shouldn't be happening. Is this burning skin thing just me or has anyone else experienced this? I'm not rich and I don't want to take out a loan for thousands of dollars to get a result from a place that's going to keep me taking out more loans for false hope of relief.
I went to a neurologist on Wednesday. She said she thinks the burning is anxiety. BUT I'M NOT ANXIOUS. They give me xanax, they give me .5mg which is a ^&^^^% joke considering they've been throwing this crap at me since March and I have a tolerance to it. When I take enough of it, usually, honestly, like 3mg, the burning stops. Because the xanax makes the burning go away, does that mean that this is really anxiety? But I'm not anxious...the burning makes me anxious but I swear to God it is not the other way around. I run out of xanax way before I should and I AM NOT A DRUGGIE. I just want relief.
What should I do? The pain from the burning is making me hate life and I have a 2 year old little boy....I should be enjoying him and my life. I feel like I wish either this wouldn't have happened to me or sometimes I even wish that I just wouldn't wake up. I'm so tired of being in pain and people blowing me off and telling me it's in my head. If it's in my head, how come it just showed up one day?????? That makes no sense to me. I feel like I can't take much more of this.
Anyone else feel like they have burning or tight skin???? ANYONE????
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
The burning skin sounds like classic bartonella which can come from a tick, a flea, a mosquito, a dust mite, pet saliva.
Oh, I forgot, we don't HAVE any of those things in FL. lol
You need to get yourself to an LLMD asap and get tested. There are a few LLMD's in FL but I'll pm you with names.
posted
You've gotten good advice already, but I wanted to take this opportunity to tell you that if it were true that Igenex gives out false positives, then why would I test positive from two other completely different labs? Your infectious disease dr was TAUGHT to tell you what he told you. Doesn't make it true..it makes him a dumb @** Oh.. and I have been told there is no lyme in TN, Ark, GA, or TX.... and I have never been out of those States. Dawn
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adamm
Unregistered
posted
What the ID told you is bu!!$#!+, plain and simple. However, you
are having any experience that is, unfortunately, quite common
among Lyme sufferers, and need an ILADS LLMD ASAP.
The controversy in medicine that exists over the existence of
CLD
is pretty much analogous to that which exists over the existence
of global warming; it's been PROVEN that many if not
all cases of Lyme are non-resolving, but to line their pockets
with gold, a group of corporate and governmental interests are
adamantly denying that this is so. Millions are sick and dying as
a result of this, and I'm certain that it will be remembered as one
of the greatest atrocities in the history of mankind.
Go to Lymecryme.com for all the prof you could possibly want,
some coming from the very individuals who are now leaving us
to die like dogs, of the reality of this condition.
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posted
Those charts that show how many cases have been reported in no way resemble the truth about how many cases there really are.
For instance, look at the state of GA, just to your north. In the 90's there were a number of cases reported but then the doctors were told there was no lyme in GA and to stop reporting cases. So they did.
However, studies of animals and ticks show that they are infected with lyme, so people are also.
It is a lot like when the politicians want to show a drop in the crime rate, so they can claim credit. They just make sure the police stop reporting cases. Very simple. You don't want lyme in your state....just make sure doctors are misinformed or intimidated and don't report them. How to end an infectious disease epidemic. Ignore it.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Yes, like Dawnee, I too tested + for a co-infection with another lab and some very suspicious bands popped up as well. My test with IGeneX only re-confirmed my already + co-infection. I did test positive for some additional Lyme-specific bands, but the other lab didn't even test for those Lyme bands, which makes NO SENSE.
Please get to an LLMD as soon as you can. I agree, one day this will surely be revealed as one of the great medical travesties ever...it's horrible.
It would take an ID doc 1 minute inside of my body to understand that something is seriously wrong. What would cause a 46 year old mother of 3 with a happy and wonderful life, with no history of hypochondria, doctor chasing etc. to suddenly be going to the ER, complaining of an inability to walk, numbness, twitching, off-balance.....all the junk we all deal with - guess I've just been looking for attention, NOT!
If I had my choice, I would much rather continue living my full, healthy life as I was, not spending $$$ in efforts to get well, surfing the internet to learn all I can in my quest for wellness - GIVE ME A BREAK! Sorry...I'll get off my soapbox...grrrrr....
Oh...by the way, I myself have not had the burning skin so much (I have Bart, Babs and Ehrl), but my 79 year old Dad, (who also wanted attention) and got sick when I did, does have that symptom on his feet a lot - he has Bart.
Posts: 566 | From West Coast | Registered: May 2008
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bettyg
Unregistered
posted
nessa,
did you post you were going to an infectius disease dr? NO NO...they don't believe in chronic lyme and treat for UNDER 30 DAYS!
sorry, i couldn't read most of your post; paragraphs too long. would you edit please?
suggest you edit your SUBJECT LINE to being very specific!
went to infectious dr; NO LYME IN FLORIDA; need llmd!
that says it all right there! ****************************
did you get my newbie package also?
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. *******************
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posted
Thanks for the replies and for the link to all of the cases reported to the CDC.
That doctor, asked me all of the symptoms of Lyme, and then the last question was "Have you made any trips to the Northeast recently?" and said "Nope", and then he said, "Well, that means it's not Lyme".
After spending 10 minutes with me, he diagnosed me with Chronic Fatigue and fatigue is a problem but definitely NOT at the top of my list.
He asked if I cried a lot and I said "Yeah because I'm frustrated from spending every last cent to family's name and being in pain"...
And he says, "Oh people with CFS just cry all of the time, that's what they do."
Sorry about my wordy/long paragraphs. I will try my best to break it up. I am a long winded person and I'm used to writing a certain way....so you might have to remind me to break it up a bit.
Am I supposed to double space every sentence??? Or can I just break up the paragraphs into shorter ones?
I don't want to offend or be bothersome to people!
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
I've gotten the same "lecture" from a couple of doctors myself. I have a CDC positive western blot from IgeneX. They also asked me if I had traveled...I had been to Florida...which as you know doesn't count!!
Hey, I have had about every neurological symptom. I had burning on my face along the trigeminal nerve. I was put on something for migraines that helped to blunt it. I guess I had more numbness/vibrating sensations than burning.
I am getting better on antibiotics, it is like a miracle. It was definitely worth the $200 for the western blot test for me!!
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Nessa, many people who actually have lyme are diagnosed with chronic fatigue syndrome.
Chronic fatigue has NO test to find out if that's what you really have. Lyme does. I beleive Chronic fatigue is a "syndrome" (a catch-all) they are giving people who have so many symptoms they don't know where to place them or what to tell them, so they simply say that "you have CFS and there's no cure."
ALSO -- that ID doctor is probably as dumb as he sounds. Some of the things he told you is just ridiculous. People with chronic fatigue cry all the time because that's what they do?!?! Right. Of course they cry because they're so sick and yet were given a diagnosis that's probably incorrect and have to live that way until hopefully someone tells them it sounds like they might have lyme, etc.
Oh, yeah. IgeneX did NOT give me a positive test. So he's wrong right there.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I had an infectious disease doctor tell me the same thing down in Miami.
Then an internist did an endoscopy on my BURNING GI tract, some some redness but nothing major (because it was LYME and Coinfections attacking the nerves and they couldn't be detected).
He sent me home with Nexium.
You seriously need to see an LLMD asap. Don't waste another cent or thought on this man's words. It's total bull**** and you have to start getting treatment.
Take it from we Lymie veterans. Put it behind you, move forward and work on getting better!
Please trust us on this one. We've ALL been through this drill way too many times.
Hope you got my PM on the recommended docs that WON'T make idiotic, ignorant and inaccurate statements!! grrrrrrrrrrr
quote:Originally posted by Nessa1815: he basically said that anyone who thinks they have chronic or neurological lyme is obsessed with being sick and they thrive on it
Doctors like this really get my goat. I have had so many docs through the years say I was a hypochondriac or that I had psychosomatic illness that it was a SHOCK when my LLMD looked at me and said, "Gosh, you're really sick aren't you? This has been really hard for you."
It's nice to know that this is all in my head .... now I just need to think really hard and wish it gone. Wow, I didn't know it was that simple.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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