My favorite part about this article is the statement that the notion of financial conflicts is "absurd". Maybe having worked on Wall Street for almost 15 years has jaded my opinion, but in my opinion, there are almost always financial conflicts in situations like this regardless of the professional field. With that said, to be fair, only an investigation can prove either way.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
IDSA is a corrupt group that Blumenthal has exposed for having conflicting interests that interfere with the progresssion of science to cure people of this insidious disease. Where is your conflict? I actually hope you and all the IDSA robots get the disease and suffer greatly. Oh? You have been treated with antibiotics for 30 days - THEN YOU MUST NOT HAVE IT.!#@$% You lousy cowards.
Posts: 12 | From maryland | Registered: Aug 2009
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bettyg
Unregistered
posted
welcome dnn,
pleae UPDATE YOUR PROFILE and go to bottom showing YES TO ENABLE PRIVATE MESSAGES; this is how we send llmd, lyme literate md names, etc. to members ok
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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 found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
This is terribly petty of me, but.....
In the second paragraph the writer referred to the ISDA instead of the correct initials IDSA.
Hmmmmm. They can't spell their own name!
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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bettyg
Unregistered
posted
copying this and breaking it up for neuros like me. betty
Blumenthal Off Base Criticizing Lyme Guidelines
Published on 8/3/2009
By Anne Gershon
We could not disagree more with the inaccurate statements made by Connecticut Attorney General Richard Blumenthal in his opinion piece on our Lyme disease guidelines (''Conflicts of interest in treatment guidelines,'' July 19).
The physicians and scientists who wrote the Infectious Disease Society of America's (ISDA) guidelines thoroughly reviewed all the medical evidence and took great care to address the claims made by the small minority of physicians who advocate long-term antibiotic use.
Their conclusion, based on several peer-reviewed studies, was that long-term antibiotics are unnecessary and potentially harmful.
The notion that the authors had financial conflicts of interest is absurd to anyone who has read the guidelines, which recommend generic tests and a short course of generic drugs.
If the authors were seeking to profit financially, it would have made more sense for them to recommend a lengthy course of treatment and a broader definition of the disease.
Ironically, Mr. Blumenthal and those who criticize IDSA guidelines would increase profits for pharmaceutical companies and revenues for physicians who treat Lyme disease.
Mr. Blumenthal's investigation of IDSA ended without filing any legal complaint, and the agreement (not a settlement) that he signed stipulated that IDSA guidelines remain in place.
The agreement called for a special review, which is currently under way.
IDSA's signing the agreement was not, as he alleges, an admission of guilt, but an effort to end a fruitless investigation that was costing our organization (and presumably Connecticut taxpayers) thousands of dollars.
We hope the review will put to rest the tired old allegations and put the focus where it belongs: making sure that people with Lyme disease get treatment that is safe, effective, and supported by sound medical evidence.
Editor's note: The writer, a physician, is president of the Infectious Diseases Society of America.
� 1998-2009 The Day Publishing Co.
*******************************
ann, you sure can write a HOG WASH LETTER to perfection! i don't want to be downwind from this letter ... uffda; stinky !!
NOTE: THIS TIME THERE IS NO FEEDBACK COMMENT AREA!! WONDER WHY? guess they feel we would all sound off, but i'm sure on site there is the CONTACT ME, i just didn't take the time to look for it.!
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posted
betty, thanks for the welcome. I am at my wits end. Two hospital visits, coded once and carditis detected the second time - within 30 days of each other. Tests negative. The whole doctor thing makes me just cry. Feels like Im just biding my time until that final hospital visit.
Posts: 12 | From maryland | Registered: Aug 2009
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posted
lou, Though during the last hospital visit I was treated with IV Rocephin, Doxcy and Ceftin, the hospital would not admit that Lyme disease was an issue because the "one" test they took I turned out pos for the screening and neg for West. blot. They sent me out the door with the above meds and Prednisone which I tossed because it pulled all my hair out in an earlier doctor visit. I switched from Ceftin to Amoxicillin to try and clear the "fog head" after prepping for a dental appt. with Amoxicillin 1500 mg and what a big difference. I now take 200 Doxcy (Is that enough?) and 2000 Amoxicillin per day. When my temp goes up I pop 2 tylenol. I have access to a Pharmacy where a friend works, short of narcs I can try different things. thanks for asking lou, any thoughts? Oh, I have no idea how long I have had this or what phase I am in or whether the antibiotics will do the job. I also have this hateful rash where the pain occurs all over.
Posts: 12 | From maryland | Registered: Aug 2009
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posted
forgot to say that I have no main doctor. Going to a dermatologist tomorrow for the rash. Going to a Lyme doctor on Friday and I am looking for an IV cure. My mother's Hematology dr told her he could cure me, Im trying him when the doctor visit Friday is a failure. As I sat in the hospital wheelchair with a 105 temp I looked down a very long hall and my wife said that I told her "if I was to die now it would be OK".
Posts: 12 | From maryland | Registered: Aug 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I hope everyone noticed this at the end of the Day article, regarding the author, Anne Gershon:
"Editor's note: The writer, a physician, is president of the Infectious Diseases Society of America"
DNN,feel free to also join us on www.lymefriends.com for some extra support and information.
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
Tracy, cute kid that Cody. I will check out the site but I am so sick I get nauseous just thinking a bout doing anything. Registering on this site was painful. Yes, I noticed the author was part of the obstructionist group that is killing us - it prompted my first post. Are you the Tracy on Shomaker's site?
Posts: 12 | From maryland | Registered: Aug 2009
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Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
Is it possible, that we've been either hit by terrorists, or our own mad scientists? One must stop to think, if soooooooo many people have been afflicted but yet we are being ignorned, does that mean maybe the same thing that happened with THE TUSKEEGE EXPERIMENT, perhaps maybe happening again?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OUCH OUCH!
Looks like Hot Pants is back at the desk firing off more nasty letters to newspapers.
You'd think the IDSA could at least hire a PR firm so their letters don't look like they come from a 4 year old fighting in the sand box over who gets the dump truck and who gets the GI Joe and plastic horses.
Hot Pants said... "If the authors were seeking to profit financially, it would have made more sense for them to recommend a lengthy course of treatment and a broader definition of the disease."
I guess she thinks we are stupid.... or maybe she just doesn't think at all.
The narrow definition is to use when doing research studies... $$$ cha-ching for funding that brings in...
And.. $$$ cha-ching for vaccines, etc.
As for the "lengthy course of treatment"...
Why make a vaccine for something that can be treated?
NOT TO MENTION...
Might the IDSA be brought down totally if they are sued for all the damage they've done?
posted
Isn't it incredible that the day of the hearings, there were current and previous presidents of ILADS giving presentations,and Ms.Gershon was nowhere to be seen?
She could perhaps have even given her version of the story about "making sure that people with Lyme disease get treatment that is safe, effective, and supported by sound medical evidence."
On another note, I think AG Blumenthal was very restrained in not seeking criminal charges.I'm sure his office had the evidence to proceed,and like AG Cuomo in NY State seems to (with his cases),would have had no problems making them "stick".
Should it come to a class-action suit,the IDSA's least worry would be how much the citizen's of CT are spending by utilizing Mr.Blumenthal, and all the PR in the world wouldn't amount to a snowflake in an inkwell....
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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