posted
*I BET A HEALTHY PERSON WHO DOESNT HAVE LYME WOULD HAVE A "HERX" TO ALL THESE DRUGS WE ARE GIVEN TO. I CANT SEE SOMEONE TAKING DOXY OR WHATEVER AND HAVE NOOOO SIDE EFFECTS.
THATS WHY I DONT KNOW THAT ITS REALLY A HERX THAT WE ARE EXPERIENCING. THESE ARE STRONG DRUGS...PROBABLY MANY SIDE EFFECTS.
*WHY DONT I BELIEVE IN LYME? I RECEIVED AN IGENEX POSITIVE RESULT AND I STILL HALF AND HALF DONT FULLY BELIEVE IT. MY LLMD DOC SAID 40% OF PEOPLE TESTED WILL PROBABLY SHOW POSITIVE...JUST NOT HAVE SYMPTOMS.
40%? THERE ARE THAT MANY TICKS OUT THERE? LOL OK. AM I THE ONLY ONE THAT FEELS THIS WAY?
* I GUESS WHY YOU FIND OUT YOU SUPPOSEDLY HAVE CANDIDA, CFS, FIBRO, MS....YOU JUST DONT BELIEVE SH*T ANYONE DIAGNOSES YOU WITH. SOMETIMES I THINK I JUST "WANT" TO BELIEVE IN SOMETHING.
* I FEEL LIKE ONE DAY THEY ARE GONNA DO A "MYSTERY DIAGNOSIS" TV SHOW ON ME...WHEN IM GONE MAYBE. NO BODY CAN SAY FOR SURE WHAT IS WRONG WITH ME. I HAVE THE MENTALITY THAT A TEST RESULT HAS TO BE BLACK / OR WHITE...NONE OF THIS GRAY BULLCRAP.
*IF THIS WAS REAL...WHY ARE ALL...I REPEAT ...AAAAAAALL DOCTORS IN DISBELIEF? DOESNT MAKE SENSE...THEY HAVE STUDIED MANY MANY YEARS SO MUCH THAT WE PUT OUR HEALTH IN THEIR HANDS. EVEN IF THEY WERENT TAUGHT ABOUT THIS IS SCHOOL...THEY ARE SMART ENOUGH THAT IF WHAT WE ARE TELLING THEM MADE SENSE....THEY WOULD SHOW SOME INTEREST OR THEIR COMMON SENSE WOULD TELL THEM PERHAPS WE ARE RIGHT...ETC ETC.
I KNOW....IM TYPING IN CAPS. IM TOO LAZY TO TURN THE CAPLOCK OFF. SORRY. IM NOT YELLING IM VENTING. IM TIRED IM A YOUNG GIRL..AND SO TIRED. IM LOSING FAITH. I FEEL LIKE AN OUTCAST. I REALLY AM NOT TRYING TO BRING ANYONES SPIRITS DOWN. I SWARE. I JUST HOPE WE ARE ALL FIGHTING THE RIGHT BATTLE. THAT WE ALL TRULY HAVE LYME AND THAT THE ANTIBIOTICS ARE TOLERABLE AND HELP US LIVE AGAIN. HEALTH AND HAPPINESS
Posts: 56 | From bayarea | Registered: Nov 2006
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posted
I just re-read my posting. its hard to follow. lol sorry.
Posts: 56 | From bayarea | Registered: Nov 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think having a herx and having side effects from the antibiotics are totally different. I have taken all of these antibiotics in the past for various things pre-Lyme, such as sinus infections, strep throat, etc. I NEVER had a reaction to them like I have with Lyme Disease. There is no question in my mind that a herx is real. Why would so many people have the exact same reactions to ABX? I have never heard of these responses before; not with anything else. My LLMD says the only SURE way to know you have Lyme is to start taking the ABX, and if you get sicker (herx) you know you definitely have it. This has happened to everyone I know with Lyme.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Just wanted to let you know you're absolutely not alone in this line of thinking!
I think things like that quite a lot, and I've considered posting them here, but I do not have the guts.
It's not that I don't believe there is lyme disease, it's just that there are too many questions for me to feel secure in believing anything about it.
That's what my education is supposed to train me to do(weigh all sides of an issue and question the facts), so at least I guess that has worked well! It's also just my nature.
I hope it's one of those things that we'll tell our kids or grandkids about; when I was in school, we still thought Pluto was a planet! I remember when we got the internet in our house! When I had lyme disease people hardly knew anything about it; you could hardly even get it diagnosed!
Until then, I will remain skeptical about everything and hope I'm doing what's best for my health.
Posts: 106 | From Michigan | Registered: Oct 2006
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quote: to start taking the ABX, and if you get sicker (herx) you know you definitely have it. This has happened to everyone I know with Lyme.
This didn't happen to me. No significant herx at all, but every test except the ELISA I have taken was positive including PCR. Not everyone has a herx reaction.
Posts: 649 | From United States | Registered: Dec 2003
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posted
Tracy...that is very very true. I didnt think about that. Great feedback. And Kate....Thx for the support. I hate to be negative. I have a hard time imagining this little critter walked all the way over to the middle of the bay area to bite lil old me. LOL
You are right...lets just be positive and have faith.
Posts: 56 | From bayarea | Registered: Nov 2006
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posted
Thank you duke. I cant decide if i want to have a herx or not. LOL i havent started ABX yet. Im very very sensitive to Rx's . Part of my problem is that i tried Prozac for mild anxiety once. BAD MOVE. My body went haywire and i havent been the same since. Is there a disease that is caused by SSRI'S? LOL
Posts: 56 | From bayarea | Registered: Nov 2006
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I was first diagnosed with CFIDS which almost killed me for lack of energy for years. Then the pain started, and the diagnosis was Fibro.
Then my last doc told me I should see a psych. as he couldn't help me with the pain and fatigue anymore.
I quit him and found a good GP who sat with me and told me she thought all of my symptoms and experiences pointed to lyme (I do live in an endemic area). Tests proved positive.
I tell every doc, from neurologists, to pain medicine docs, to heart docs, to physical therapists, to acupunturists to brain scan docs........
I DON'T CARE WHAT YOU CALL IT....JUST TELL ME WHAT IS WRONG.
None of them has an answer. They just send me on to the next specialist. I've learned docs know much less than we are told they do.
That might be the scariest thing we find out in this life. But they all will keep seeing us and billing us. Posts: 867 | From PA | Registered: Jan 2006
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posted
thx tothepoorhouse... i appreciate your reply. i think your point about docs knowing less than we think is a good one. very scary.
Posts: 56 | From bayarea | Registered: Nov 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
It it probably very interesting but I can't read caps.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I hear ya...I'm new to this & frustrated also...Have taken abx (doxy) many times before , but at normal doses...and for "normal" conditions. And how do you know if you are herxing or having side effects when the warning info provided sounds just like Lyme symptoms? Pay attention to your body and decide-is it worth it? YES!!!
All I can think is what if you don't try to get well..not sure exactly HOW young you are, but I have teenage children (maybe your age?)and I would like to continue to be an active part of their lives-
Sometimes you have to believe & follow through on what seems to be the best course-Learn to be your own advocate-Research, read & learn! I truly wish you well Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I hope you dont mind but I converted this to lower case for you so others who have trouble with their eyes can read it.
Original posting converted to lower case and more easily readable for lymies:
i bet a healthy person who doesnt have lyme would have a "herx" to all these drugs we are given to. i cant see someone taking doxy or whatever and have noooo side effects.
thats why i dont know that its really a herx that we are experiencing. these are strong drugs...probably many side effects.
*why dont i believe in lyme? i received an igenex positive result and i still half and half dont fully believe it. my llmd doc said 40% of people tested will probably show positive...just not have symptoms.
40%? there are that many ticks out there? lol ok. am i the only one that feels this way?
* i guess why you find out you supposedly have candida, cfs, fibro, ms....you just dont believe sh*t anyone diagnoses you with. sometimes i think i just "want" to believe in something.
* i feel like one day they are gonna do a "mystery diagnosis" tv show on me...when im gone maybe. no body can say for sure what is
wrong with me. i have the mentality that a test result has to be black / or white...none of this gray bullcrap.
*if this was real...why are all...i repeat ...aaaaaaall doctors in disbelief? doesnt make sense...they have studied many many years so much that we put our health in their hands. even if they werent taught about this is school...
they are smart enough that if what we are telling them made sense....they would show some interest or their common sense would tell them perhaps we are right...etc etc.
i know....im typing in caps. im too lazy to turn the caplock off. sorry. im not yelling im venting. im tired
im a young girl..and so tired. im losing faith. i feel like an outcast. i really am not trying to bring anyones spirits down. i sware.
i just hope we are all fighting the right battle.
that we all truly have lyme and that the antibiotics are tolerable and help us live again.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
lymesucks, please copy your ENTIRE post to your word processor and have it converted to LOWER CASE so we can read it.
I don't remember if I saw paragraphs or not; it was a complete turn off since on the board we do NOT use ALL CAPS for the entire post; BIG NO NO! It's consdered shouting here.
Please copy your finished product, and bring back here and PASTE to your top post by clicking PENCIL ICON to edit.
Paste it first to your post, then DELETE ENTIRE ALL CAPS BELOW IT by doing a block delete!
Please do not do this again; we thank you.
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posted
Well GEEEEEEEE Lymesucks, I really don't know...
I was bit in 1985 - not diagnosed until 1990, sickly thru the 5 yrs but nothing that wasn't fixed with antib. off and on, or nothing that pointed to Lyme during those yrs
OUT of the blue one morning in 1990 - I could not walk - I could not breath - I was 30 and felt 90 - my entire body hurt - I could not roll over even on a soft bed - my head felt like a constant migraine, my thinking process completely left me - my balance was that of a drunk - my baby bottles were going in the washer instead of the refrig. - my body felt different - I hurt all over - my eye sight was like that as if I were in a bubble, just to mention a few things ......
It took a month from there to find the right answer for what was making me feel like I was suddenly dieing - before the diagnosis, I was placed on physc meds - that did nothing.
When I finally tested positive for Lyme and began my journey with it - it took many a yrs and many antib. to SAVE my life and restore myself to at least 80% - and today it's still a struggle to keep things at bay.
I personally credit my life to my 1 Doctor who did stick it out with me and didn't stop until he found out what was really wrong, and knew I was not crazy.
Are Doctors GOD - nope - but society teaches us that they are and before Lyme I myself believed that. It takes alot to become a Doctor and all of that should not be ignored or discredited, they are human and sometimes they just can't fix as they are taught, sometimes they are faced with ill people that they just can't help - not because they don't know how - but because they are faced will an illness like that of Lyme which comes along with a host of mystery actions and can be different for many.
This I am sure of LYME is not a demon to be ignored and left untreated or undignosed.
Looking back on my journey with it all - including the severe HERXING to the point of which many times I just knew I wouldn't make it.....would I do it again?
YUP - you bet - because LIVING is worth it!
[ 03. December 2006, 08:10 AM: Message edited by: Ladylee210 ]
Posts: 374 | From NJ | Registered: Aug 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
OK YOU FOLKS....
I'll try and be serious here... I probably had lyme all my life...
When I would tell doctors that the abx they gave me for whatever reason(pre-lyme diagnosis but
post infantile paralysis at age four and migrains and stomach and depression issues the rest of my life)
would make me hit the sack for three or four days they would say stuff like...."hmmm that's not supposed to happen" or "Hmmmm Interesting" or when
I would get vaccines for different stuff and it would make me sick...the ducks would say..."hmmmmthat's interesting" or "hmmmm that's not supposed to happen...
or even "hmmmm you're imagining it" or for cryin out loud...."hmmmm, so what do you think is causing this?" the damn morons....
Look. Killing spirochetes causes toxic release and makes us herx...trust me.
If you don't herx...you either did'nt do the right abx for your strain of spirochete....to cause it to be killed....YET!
Or you are suffering from co-infections that don't release the toxins that cause the herx.
YOU"RE WRONG lymesucks when you say
"ALL AND I MEAN ALL doctors are in disbelief about lyme disease"....
They know FULL WELL what it is and to stay away from it or suffer prosecution!
OR DON"T YOU GET THAT YET!!!??? and I am yelling!
Some do! And a lot of those that do recognize it are helping....
Yes the meds are bad on the system...anti-biotic MEANS ANTI BODY.....IT KILLS STUFF IN OUR BODY!
as opposed to PRO-BIOTICS....which grow stuff in our bodies....good stuff....
So far with medical science...that's the best they can do!
Kill stuff...or prevent stuff...or block stuff...
or stop stuff...which are usually normal bodily functions....
but CURE STUFF!......HAH! At least not in our cases....
You've answered your own question about "I can't believe the critter walked all the way accross the bay(or whatever) to make you sick" by stating
You're LLMD told you 40% of folks have lyme but not all are symptomatic....
This disease IS MORE WIDESPREAD and already in EPIDEMIC proportions much more so than WEST NILE VIRUS OR BIRD FLU!
OR don't you realize that yet???
It also has PHASES or WAXING and WANING where we don't always feel sick....
or can go pretty DORMANT for YEARS until something upsets the ballance between IT and YOUR OWN IMMUNE SYSTEM...
that WAS previously keeping it dormant!\\like stress...or an inoculation...or steroids...or just old age weakening our immune systems....
YES...this bug IS THAT PROMINENT....and so is the disease.
wake up and smell the ammoxicillin capsules(man don't they stink and taste bad like the flagyl!)
YUK>>>>>>and prozak when they first gave it to me caused me to have my very first ever panic attack...
DID I MISS ANYTHING????
Let me know........zzman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Lymesucks, Its ok to question and rail against the terrible place you find yourself with this disease.
I wonder too sometimes if Lyme is the real boogeyman or just one of the bugs taking advantage of my damaged immune system.
Zman has said it all best and I agree with him on everything except that antibiotics are the ONLY cure available.
First, Borrelia 10M and 1M by Deseret Biologicals is a homeopathic remedy that can only be obtained by prescription. It caused amazing herxing reactions for me and the die off toxic release was so great and my body was so poor at flushing out the toxins that I became completely swollen and disfunctional. I was working with an LLMD who believed in toughing out the herx with pain killers. I now believe that was not the best approach.
I am now working with a doctor who believes in slowing down each time the body herxes to allow time to flush out the toxins. He also promotes detoxing with IVs of glutathione and has me on many supplements also designed to detox.
I am 100% functional most of the time. He also tested for other things that could be causing me pain such as yeast, metals, food allergies and we are addressing these issues as well. I do have a positive Igenex test as well as a low CD-57 so lyme is in my mix for sure.
ie: I tested very allergic to egg whites. Man, egg whites are in everything. I also tested slightly sensitive to gluten and was told to eat it sparingly. Well, I'm practicing avoidance just to be sure; but last night we went out to dinner and I stupidly had two biscuits. After having absolutely no pain for 2 weeks, I am sitting here this morning in the worst joint pain I have had in 8 mths. Owww!!!
The only thing I did different yesterday was eat the biscuits. I am certain either the glutin or the egg whites is causing this reaction. Not my lyme.
For many, lyme may be the most prevalent problem and for many, it is not.
All of us need to look beyond lyme (while continuing to treat lyme) for any other possible causes to our symptoms.
I am happy to be getting such good results without abx because there are no negative side effects to my approach. And, avoiding biscuits to avoid pain is simple, simple, simple.
I absolutely believe in abx for acute lyme, but not so sure about chronic lyme and can assure you, if you prefer not to use abx, there are very good alternatives out there and medical doctors are using them with success.
As far as questioning if there are enough ticks out here to make us all sick, are you kidding? You must not own a dog who is allowed to run in the fields. Plenty of ticks in our neck of the woods.
Also, don't forget that lyme bacteria has been found in mosquitos & black biting flies too.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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I'm going to answer your post point by point. I find that easy to do, since you highlight common misconceptions in the "other" world of medicine that we so often have to rage against and combat their ignorance. I hope this will help clear a few things up for you.
*Healthy people DO NOT react similarly to the abx that you are on. I know this because I am healthy and have taken the meds in the same doses as you lymies and have NEVER felt the way they make my husband feel. I have only ever gotten better on abx and fast, too. My husband started out with 200 mgs of doxy per day, the same as acne sufferers--sent him for a loop!
*Asymptomatic infection is the rule in many diseases. For example, the majority of people who test positive for West Nile virus are asymptomatic---(Never knew they had it!)It doesn't stike me as odd if 40% of people at Igenex test positive (I'm going with your stats here and I don't know if they are correct) and if correct it doesn't make me question the validity of Igenex. Plus, are you sure that lyme is only transmitted by ticks??? I think there are some researchers out there who would refute this.
*multiple diagnosis' of other diseases usually comes before the dx of Lyme. Many people do believe in the initial dx. In our case, we had fully accepted an MS diagnosis for two years---no delusions going on here. It was only after we became aware of the possibility of lyme that we researched our fannies off and decided to give it a go.
*Lyme disease is complex and you are correct there is no one magical test that can tell what is wrong with you--you must be your own advocate and learn as much as you can. Knowledge is your best friend.
*Just because the established medical community doesn't believe in Lyme does not make them correct. I could site example after example of revolutionary thinkers being chastized for knew thinking modalities. My husbands LLMD says that changing medical paradigms takes not YEARS but DECADES--looking at history, I know he is correct.
This is one tough spot to be in----You guys know you are sick and the force of the entire medical establishment is against you. I am sorry, Lymesucks, that you are having these feelings, but these are the cards you were dealt.
Some common sense---If you haven't already, you should join a support group. One on one sharing can be very relieving. Look at research, abx has been shown to improve disease process in all of the diseases you mentioned---CFS,Fibro, MS, even RA,Alzh., ALS. There must be a reason for this and I doubt very much it is from anti-inflamatory action. This is not proof positive, but it is a little light shining at you.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
We must realize that our great grandchildren will view us as guinea pigs for this silent ignored epidemic.
Medical schools don't spend five minutes on this disease and after medical school all the docs have are the guidelines.
There is no money in research, since there arre so few cases reported, there is no interest by drug companies, this is due to the fact that we don't die...we just want to die and can present few objective findings of our illness to a doc.
Our illness is in its infancy in terms of studies.
This is why Dr. B is conducting the largest ongoing study for lyme through all our llmds, networking with them to collect data on us.
There are huge financial and political forces keeping a lid on this but the sheer numbers of disabled lymies will change this-especially as famous people get sick and champion the cause.
The lyme film will bring awareness.
Lawsuits against docs in endemic areas who neglect to test or treat will bring awareness.
Our ablility to access up to date medical information and challenge doctors will bring awareness.
I honestly believe that when the tipping point comes, it will be devastating. Chronic illness like MS, ALS, RA, lupus etc will be acknowledged as having parasitic/bacterial etiology and then watch the money flow for research and education.
Don't blame the docs. They are just unaware and fighting to keep their licences.
-------------------- We are spiritual beings on a human journey...
Good point on other things being wrong prior to Lyme and or could be instead of.
I was tested for everything under the sun (all neg) along with 9 negs. for lyme - before I was taken seriously and on a long shot and having the doc not give up on me - testing me one last time (AFTER all neg tests) for Lyme thru Igenex and there was my postive for Lyme finally.
So we went on the long Lyme journey!
Not to mention during this month's time of all the other testing being done, I was progressively gettig worse. My treatment for Lyme started after the postive which was a month later.
[ 03. December 2006, 01:15 PM: Message edited by: Ladylee210 ]
Posts: 374 | From NJ | Registered: Aug 2006
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posted
I too felt the same confusion and frustration initially. Like you lymesucks, it was partly because I'd been told I'd had those other things and didn't really trust what I thought was the newest "fad". I found it impossible to believe that this test - which almost all doctors seem to rely on - couldn't be trusted. Even after I was diagnosed, I was skeptical for some time.
Fortunately I herxed like crazy on an antibiotic that doesn't make acne patients bedridden. And then I started getting better, very slowly, over a period of years.
I was getting better, and STILL I was a little skeptical.
In the end, it wasn't "Camp B" (ILADS) and all the studies they cite that convinced me. It was Camp A. Let me explain...
I felt compelled to read Camp A in their own words, to really make sense of this. I started reading journal articles from Wormser, Steere and their buddies about how often the rash happens, about how good the tests are, etc.
I braced myself, expecting to find a solid position that countered my own experience. I thought - this is what most of the doctors believe - I was almost afraid to read up, to be challenged this way.
And then I was shocked. There was no challenge. I discovered that their "research" may be published in big-name journals, but it's every bit as flawed as "Camp B" says. Their conclusions are absurd - all circular logic.
As an example, they'll take a group of early Lyme cases diagnosed by CDC criteria (which require a rash or certain specific manifestations + positive test), find that 90% of them have the rash... and then they conclude that the rash happens in 90% of Lyme cases. (Obviously if you rely on that CDC definition, a high proportion of those people are going to have the rash. That doesn't mean Borrelia burgdorferi produces a rash 90% of the time.)
Same thing with tests. They take a group of late-stage patients diagnosed by CDC criteria, meaning they have already tested CDC-positive by ELISA and Western blot. Then they gave them another Western blot and lo and behold, the majority test positive again. What a shocker! They say this "proves" the tests are reliable for late-stage Lyme.
I'm not describing two random, bad studies. These are considered very important studies, cited over and over again - including in the new IDSA guidelines and by the CDC - to tell doctors that the rash nearly always appears, and that the tests are reliable.
Most doctors follow Camp A's approach, because they trust the IDSA and CDC for lots of things. They don't have the time to do the research on Lyme themselves, and read all the studies. Maybe they'll read the abstracts, which don't give the whole story. Read the Klempner abstract, and you won't know that the study was a joke.
Meanwhile, there are many doctors who do not agree but are silent. They're afraid. Medical board investigations, professional alienation, pressure from hospital employers... who needs it.
I know it can seem hard to believe that so many are "wrong", but the fact is that there are only a few driving the IDSA/CDC position. Everyone else is following blindly.
You don't have to be a conspiracy theorist to see that IDSA/CDC are screwing this up big time.
If they were right...
How come they never take up ILADS' suggestion for a joint medical conference? How come they won't go head-to-head?
How come they go around saying ILADS has no evidence, when certain ILADS docs give presentations with hundreds of references (which they ignore)?
How come the ONLY arguments in the IDSA guidelines against studies documenting persistent infection despite treatment are.... guesses that the patients were reinfected or that there was laboratory contamination??? (with NO evidence)
How come their new public argument is "we've got 8,000 members!" Isn't that a little pathetic? I mean, obviously 8,000 IDSA members aren't studying Lyme disease. (Not to mention the IDSA members who disagree but weren't allowed to participate in the guidelines process.)
I looked and looked for Camp A's response to ILADS' criticisms. About the tests. About OspA and OspB being important markers which the CDC doesn't look at. About the flaws in the Klempner study.
They have never responded to these things. Ever. Their strategy is to PRETEND these criticisms don't exist, and hope no one will notice.
They are hoping doctors will be intellectually lazy (or overworked) enough to not examine this carefully.
Well, AG Blumenthal noticed. And lazy, he is not.
(Having said all this - and re: lymesucks' comment about hoping "we are all fighting the right battle" - as with any disease, there are going to be some diagnosed with Lyme who don't really have it. But good doctors - including good LLMDs - always consider other possible diagnoses and rule stuff out. In contrast, the IDSA is ruling chronic Lyme out altogether.)
Posts: 621 | From US | Registered: Jun 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Thanks luvs2 for the cuddo's
However I never said abx was the only thing that works...
I am well aware of other alternative treatments that bring relief for symptoms of this disease.
I have even utilized some. However......none are 100% cures...meerly adjunctive help to our suffering.
ABX can be a cure IF a big IF the disease is caught early on...however none afflicted seem to get properly diagnosed and treated in adequate time to effect cure.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
You are all right and very informative..even those that seem a little mad for my posting. I WANT to believe in it...and im starting to more and more. You gotta understand..i was told by a naturopath YEAST was my problem, then a Rheumy said CFS and Fibro, then the MRI MS issue... . I was taught to TRUST our medical professionals. I dont see what the motive would be for the medical community to not believe in Lyme so whole heartedly. The only thing i can think of is that its expensive but arent all chronic illnesses costly????
Sorry about the caps and thanks for reposting in lower case.
Bare with me folks..im very new at this disease and not in a very good state of mind. I appreciate everyones input and have stored it in the little memory bank that i have. Posts: 56 | From bayarea | Registered: Nov 2006
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quote: I was taught to TRUST our medical professionals. I dont see what the motive would be for the medical community to not believe in Lyme so whole heartedly. The only thing i can think of is that its expensive but arent all chronic illnesses costly????
I think the trust issue has hit every chronic lyme patient at some point like a hammer.
As to motive, keep in mind that it's not the whole medical community... it really is a very small group running the show. With a small group dictating policy, you're more likely to have motives other than the public good.
There are well-documented issues with insurance cos., patents, and more, if you feel like doing some research. (It's not only lyme - just today there was a news story that six members of an FDA panel discussing the safety of stents have financial conflicts of interest: http://tinyurl.com/y9uvhx )
All chronic illnesses are costly - except for the ones that don't exist. (Chronic lyme now officially does not exist by new IDSA guidelines.)
Don't mean to sound argumentative - I have been in exactly your shoes. I know it's pretty incomprehensible.
Posts: 621 | From US | Registered: Jun 2006
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posted
Wow Ladylee, thank you for your story. And the 'YUP' at the end. Couldn't have been said better. I have had lots of diffulity with antibiotics. C.diff and the constant/recurrent yeast infection from top to tail... and I HATE ANTIBIOTICS! But YUP it is worth it. I am living. Von
PS about doctors: I suspect that most doctors are just under educated about lyme..... I have seen it happen. The Primary doctor suspects poss. lyme disease...... so they refer to the ID ducks, and the ducks say it is NOT lyme.
Then the Primary loses confidence or thinks its not lyme. Very few Primary doctors will go against the 'specialists' that they refer to.
PLEASE do your part to educate our regular doctors, dentists, vets ect. Be kind! Be respectable.
WE Have a great opportunity with all the current press. Copy it and take it to your doctors.
Help educate our doctors!
Posts: 258 | From Washington State | Registered: Nov 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
if you don't believe..or question...just keep reading.
when you are really foggy read easier to read stuff...other's stories, tom grier, newspaper articles
when you are less foggy-try reading research articles(not just the results) or ilads response to them...
just keep educating yourself...after awhile it will all fall into place.
remember-there's lots and lots of variables-we all react differently to infection-we all respond differently to treatment and need different protocols...pay attention to your body and have a two way conversation with your llmd...
this is not "take an aspirin and call me in the morning medicine"
like tony-after ten yrs of reading and being told i didn't have it...it all started to make sense and i knew i had had it for a whole lot longer than ten yrs and so had my mom and my siblings and my kids.
that all being said...the first year of treatment i had was undertreatment and wrong treatment so i wasted another year and 10,000.
so-LISTEN TO YOUR BODY and find a doc you repect who respects you. there is NO one way to treat lyme.
good luck. please don't give up. they know a lot more now than they did when i started.
it really helps to have a non-foggy advocate too.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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