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Sunday, October 11, 2009


"Childhood friend's daughter in ICU for two weeks with-- Lyme disease---It is one thing after the next."
Keith Olbermann on health care.


"I just saved your life (diagnosing Lyme disease in friend's wife)." Larry David.


"I heard you never get over Lyme disease; I have a friend in a wheel chair; so many people are so sick, its a very scary disease." A patient.


"I used to function at a high level (computer engineer), now I can no longer do my job" A patient.


"I have been to 40 doctors. No one ever took me seriously--thank God you are listening to me."


" I would like to help you--but we have a two tier test--you never had a rash--NIH studies--
IDSA recommendations--and CDC--I can't treat you I might get in trouble--those ILADS, LLMDS are--I don't know, out there--you don't want to miss another "real" diagnosis like fibromyalgia or depression."



Kara said...

Oh, gosh. I've heard or read that phrase -- or the other, "Two weeks of Doxy" so many times ... usually from people whose stories are enough to make my heart ache.

Joanne said...

So many patients how can IDSA close their eyes to our plight?

How many more patients must seek private health care when they know simple antibiotics improve their symptoms?

I was one of the very few fotunate patients whose doctor could see the improvements in my arthrits on antibiotics and deterioration off them.
She took the time to read ILADS guidelines and continued to treat for many months.

I am now 100% recovered whilst on antibiotics but still deteriorate off them.
I never had a positive test but a LLMD confirmed my doctors presumed diagnosis clinically.

Whatever our cocktail of illness if the antibiotics help why so wrong to give them?

If it restores you to such an improved state of health the risks of complications is well worth it, rather than be left in a state of hardly being able to stand or walk across aroom.

Many thanks for your tireless efforts to help so many people with Lyme disease.

Anonymous said...

Unfortunately so many heads are still in the sand about this. If you had the "three weeks of Doxy" and are still sick then it is something other than Lyme.

I am hoping more are starting to question as so many more are being affected..

glytzhkof said...

The money is in a vaccine, not in antibiotics from the seventies (for which patents either have, or will expire soon).

Terribly interesting how the previous Lyme vaccine triggered "Lyme like symptoms" or auto-immune reactions in some people - and was pulled from the market. Just a coincidence of course...

Off all the antibiotics I have taken, Doxycycline caused me the least grief - unless you take it on an empty stomach. I self medicated with the highest doses I could tolerate, and that's when I started seeing real improvement.

As a side note: I took many different kinds of Doxycycline, and I seemed to respond better to the capsules than the tablets.

Melissa Morgan-Oakes said...

Around here you won't even get 3 weeks of Doxy even with a rash and a pos. ELISA - treatment standard in local practices seems to be 10-14 days of Biaxin or Doxycycline only.

After 16 weeks on Biaxin/Plaquenil, 2 on Doxy/Flagyl and moving into 2 on Mepron/Biaxin (we're pulsing those four for 8 weeks) I have my life back.

My PCP ordered an ELISA (negative, of course), patted my head and said "It must be Fibromyalgia, here's some nice antidepressants, have a nice life."

My ILADS/LLMD saved my life. And it wasn't with 3 weeks of Doxy.

Michael said...

This is the common thread amongst many Lyme stories. It's so sad that a lot of people do not receive the proper treatment they deserve.

MaWaSi said...

Simple really, just say you have Rosacea and you can be on long term Doxy reborn as Oracea(R) Galderma. Having anoter PICC placed today. See how things go. My Rosacea's been brutal lately.

Unknown said...


Just wondering if you think your Rosacea is an autoimmune disease brought on by Lyme disease.

MaWaSi said...

Hi Sarah,

I have no rosacea, I was pointing out that our FDA, in it's wisdom, finds long term abx fine for a skin condition, but not if your condition is such as Bb patients live with. Dry Humor?

Momcat1011 said...

Assuming one is treating a patient newly recently infected, the reason 3 weeks of doxy does not work, is an underlying deficiency in the cellular immune system, such as a deficiency caused by diabetes, pregnancy or fatty liver disease. In those individuals who are chronic, AB do not work alone, because Bb induces this same cellular deficiency. It is interesting to note that this is the same mechanism as seen in tb infection.

MJ said...

What I understand is that those three weeks are not enough because of how the bacteria lives and reacts and reborn and hides; plus that the person is also infected by other type of microorganisms like parasites and also worms, so a short treatment Doxi can't make the miracle. To treat Lyme Disease it is needed a combination of long term antibiotics and anti-parasitarians and "bug"medicines like Bactrim and Flagyl and many other different considerations including Ivermectin. It is not that your case is chronic and others aren't; is that every patient not treated properly will continue to suffer and deteriorate because that is what bugs do. If IDSA can demonstrate that these team of bugs are dead with just three weeks of Doxy we'll all shut up!

Shawn said...

This would be a great place to post what people should take immediately after a tick bite. Would 3 weeks of Doxy, Zith and perhaps Amox be appropriate?

Unknown said...

Dear LymeMD,

I'm pretty sure that you don't use this blog as an outlet to give advice but if you are able to reply to my question, your help is deeply appreciated.

I'm a healthy 31 year old woman living abroad for three months in a place where I don't really speak the language. I was diagnosed with Lyme in July while living in upstate NY. I presented the classic rash at the site of a tick bite (underarm) and severe shoulder pain. I took doxycycline for about three weeks, it made me really nauseous.

Now it's November and after having four months of no symptoms, that very specific pain seems to be returning in my shoulder. I'm wary of taking antibiotics again since I'm just getting over a terrible yeast infection (I don't normally get them so I'm pretty sure my system was compromised by the summer antibiotics for Lyme). I don't think there are many LLMDs where I'm living. What can I do to keep the situation under control while I'm away from home?


Nichole G. said...

Your blog is amazingly helpful to read. 3 weeks of doxy... I wish I had found this when I was first diagnosed with Lyme almost 2 years ago. I believed the 3 weeks of doxy line... Then when I was told I was "cured" I had to spend another year trying to figure out what was wrong with me. If I only new then what I know now...IT WAS LYME ALL ALONG! Keep blogging!