I've had lyme for 7 years and absolutely love my llmd, who I credit with saving my life. We'll call him Dr. C. My sister, age 24 and six years younger than me, was diagnosed by Dr. C as having lyme this summer due to a positive Elisa and some +/- scores on the Western Blot.
My sister, Alison, is now back in her home in Colorado while I'm in Florida, and she's seeing a new infectious disease specialist up there to continue her care.
What this llmd has told her I find absolutely shocking and completely contrary to anything my Dr. C has told me. Her new doc told her she does NOT have lyme, that the Western Blot +/- scores confirm this for her, and that in many cases the Elisa test produces false positives. I am floored by this.
Dr. C had Alison on a 2 week protocall of Zithromax, Ceftin, and Tindamax (500 mg of each twice a day - totalling 1,000mg of each per day). After 2 weeks Alison was to take 2 weeks off, and then have two more weeks of the abx regimen.
Unfortunately, Alison had a very bad allergic reaction a couple of weeks ago, and we're trying to determine the cause. It was an anyphylaxis reaction and it happened 32 hours after she had last had abx and after eating pea soup, now a suspected allergy. The docs there at the ER and her new infectious disease doc are telling her it was the abx, and my Dr. C told me it was definitely the food, for drug allergy typically doesn't happen that late after the fact.
To my amazement, Alison's new infectious disease specialist in Colorado not only agrees that it was the drugs that made her sick, she told Alison she should sue Dr. C for malpractice!!! She said the concoction Alison was on "could kill a horse," and that the two week on, two week off protocall is completely "assinine" and lends itself to building antibodies and having bad allergic reactions.
She went on to tell Alison that chronic lyme is a myth, that you treat it with doxycycline, and that any residuals you have from lyme such as fibromyalgia you treat individually.
In essence, we have my sister's doc telling her the doctor that saved my life, Dr. C, has no business practing lyme and should be sued for malpractice.
It scares the hell out of me to be receiving opinions as opposite as these. Who is right, and who is wrong here? Was my sister truly on a toxic concoction that could kill a horse? Has anyone else been on a 2 week on, 2 week off protocall of zithro, ceftin, and tindamax (500mg of each twice a day?)
Your thoughtful responses greatly valued.
Posted by Lisianthus (Member # 6631) on :
Well thats an ID DUCK for you! They are all idiots!
Tell your sister to come here and READ READ READ, then find a new doctor so she can get well or she will end up worse off. Or they will just tell her she has fibro or MS and just to live with it.
Good luck, Lisi
Posted by lymednva (Member # 9098) on :
quote: Well that's an ID DUCK for you! They are all idiots!
I agree completely. She needs to find a good LLMD to treat her. Reading here will just help her know what to look for and to expect from a well-informed ILADS doc who really knows how to treat Lyme.
Posted by lymeladyinNY (Member # 10235) on :
Chronic Lyme is NOT a myth as we all know.
The ID doctor is saying what the vast majority of ID doctors say, and following IDSA guidelines.
If you feel Dr. C. saved your life - then he saved your life! I don't see where there can be doubt about his skills in treating Lyme. If in doubt, go with the doctor who follows ILADS protocols, in my opinion.
Too bad sis is in Colorado - I don't know how close a new LLMD would be to her there. I'd forget about what the ID duck has to say and I would suggest she not see that doctor for Lyme disease care. I've come across many ID ducks and they all sing the same old tune - you're a fruitcake, you're not sick, NO ANTIBIOTICS FOR YOU!, take it up with your psychiatrist, etc.,etc.
I'd be 6-feet under if I'd accepted their diagnoses and "advice" 4 years ago!
I've got pretty strong opinions about this subject!! Sorry if I ranted! Posted by skimpbiz (Member # 4433) on :
Thanks so much for the replies....they are very much appreciated.....do you feel the regimen MY llmd put my sister on is "malpractice and enough to kill a horse?"
Posted by sixgoofykids (Member # 11141) on :
I am on Mepron, Biaxin, Plaquenil, Minocycline, and Nystatin ... it's a strong regimen and even most LLMD's don't prescribe that many meds according to my LLMD's assistant. Before this I was on Mepron, Biaxin, Omnicef, Probenecid, and Doxy.
So, no, I don't believe it's enough to kill a horse ... heck, it's HARDLY is enough to kill Lyme!
Given that I have a choice of going to a doctor who says chronic Lyme doesn't exist, let's treat the symptoms only -- or a doctor who says I can get better ... I don't even need to think about which I'll choose! I'll give the one who can make me better a try! It's a no brainer to me!
In my opinion, the ONLY false positive you can have for Lyme is because the CDC has so many non-specific bands as being diagnostic for Lyme. Theoretically, you can have 5 non-specific bands and show CDC positive and not have Lyme.
However, with Lyme specific bands, I don't believe there's such a thing as a false positive.
From what I've heard, the ID docs are the ones who understand Lyme the least.
Posted by sickandtiredofbeingsandt (Member # 10189) on :
And for reasons of their own (in health insurance companies pockets and medical politics) ID docs do not WANT to believe that chronic Lyme exists.
THEY are the ones that should be sued for malpractice. There are good LLMDs out there. Enough to know that they are not in "it" just to take people's money. Yes, they are expensive but what specialist isn't?
LLMDs want to make you well. ID docs don't. It's a "no-brainer". JMHO
Posted by sickandtiredofbeingsandt (Member # 10189) on :
Oops, double post
Posted by David95928 (Member # 3521) on :
What they said.
Posted by Geneal (Member # 10375) on :
I believe false positives on the Western Blot are as common as false pregnancy tests....
Tell your sister to join lymenet and research, research, research.
Also find a LLMD....
My daughter's pediatrician also said basically the same load of crap to me in
Regards to my daughter's Western Blot.
She had IgG 41++. but IND bands on 39 and 83-93 respectively.
Those are very specific bands.
I asked her what else does she think my Five year old was exposed to that caused that.
Sheesh!!! I should of just walked out of the room when she walked in carrying
A book of the CDC guidelines for treatment of Lyme!!!
Not only was that a complete waste of time, it has significantly lowered my trust
In a doctor who has been with both of my children since birth.
Does your sister have symptoms????!!!!
My LLMD always says Treat the Symptoms!
Not to be ugly, but I don't think many ID ducks would understand Lyme even if it bit them on the butt.
Hugs,
Geneal
Posted by Truthfinder (Member # 8512) on :
Skimp,
quote:What this llmd has told her I find absolutely shocking and completely contrary to anything my Dr. C has told me.
Clearly, this is NOT a LLMD. This is a LID - a Lyme-Illiterate DUCK.
The LLMD situation in Colorado is in a state of flux, but there are still a couple of possiblitilites out there for her.....
Why did she choose this ID doc anyway?
Tracy
Posted by pattilynn (Member # 8065) on :
If it was an allergic reaction to antibiotics she would have had a reaction when she first started them. Why is she wasting her time seeing an ID doctor?????
Do a search here on "infectious disease" doctors.
Posted by luvs2ride (Member # 8090) on :
The ID duck lost me when he said "there is no such thing as chronic Lyme".
#1 If tests are so inaccurate, how can they know for sure the lyme is gone? What proof does anyone have that a short round of doxy does the trick?
Luvs
Posted by skimpbiz (Member # 4433) on :
Thank you SO SO much to everyone for all the thoughtful replies. Lymenet is an awesone place!
I am in the process of cutting and pasting these in an e-mail to my sister, so she can attempt to understand what I've tried to share with her.
So much support here, and so much love....thanks again.
P.S. The only pseudo-bone I have to pick with any of the replies is the throwing of all ID docs under the bus. The doctor that saved my life, Dr. C in Tampa, is officially listed as an ID doc but 90% of his clientele have lyme disease and he also classifies himself as an llmd. If an ID doc is not the right person to see, what kind of doctor is? Just wanted to share.
Posted by pattilynn (Member # 8065) on :
From what I have seen and heard from other people, llmd's seem to be mostly family practice and internal medicine doctors who want to help people with lyme. The learn all they can and really want to help when no other doctors will. They also seem to be able to "look outside the book". I think it's a rare ID doc that will consider lyme without a CDC positive test.
Posted by TheCrimeOfLyme (Member # 4019) on :
ID= Idiot doctor IN MOST cases. Throw out everything that he/she said with the bathwater.
I would like to point out HOWEVER, that some people CANNOT TOLERATE the on/off on/off thing. I was one of those patients. I was WELL on my way to recovery when I got hit with that same type of protocol. It set me back, three years.
An allergic reaction can happen at any time, but it usually WILL happen right away ( not 32 hours after the last dose). But you could be on a drug for two years, and still have an allergic reaction to it ( usually within minutes of taking it though). Delayed anaphalyxis usually doesn't happen!
I'm not here to knock any doctor, but the strong hard core up front, in your face medicine is NOT the way to go for some patients. I'm one of them. Thanks to my reactions, I used to be on 3000 mg of amoxy a day.
now? I can take 500 a day, if I get REALLY lucky.
Posted by bettyg (Member # 6147) on :
skimppy
instead of cutting/pasting an email, just copy the link in address bar and send her the whole thing!
she can print it off as well. go to bottom and click on PRINTER FRIENDLY is how i read the SUPER WIDE posts and doesn't have all signatures/states, etc.
it shows who said what and their content! saves paper galore! good luck.
i agree w/all above! ILLITERATE DUCK AT WORK. sue the dr. another complaint to another state health dept.
NO THANK YOU! WE'VE HAD MORE THAN ENOUGH AND IT NEEDS TO STOP NOW! Posted by ldfighter (Member # 9405) on :
IMHO their assumption that it's from abx and couldn't be peas (which are related to peanuts, common trigger) comes from their bias against treatment for chronic lyme.
Has she had allergy testing?
quote:Originally posted by skimpbiz: Thanks so much for the replies....they are very much appreciated.....do you feel the regimen MY llmd put my sister on is "malpractice and enough to kill a horse?"
I'm not a doctor but my opinion is no, this is not an outrageous regimen at all... and this is exactly the kind of language doctors who are overtly hostile to LLMDs use on a regular basis.
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