posted
I really don't know what to do now. My MD prescribed doxy for me to take 3 weeks ago and referred me to an ID doctor.
He wrote me a letter that I received yesterday stating that I do not have LD and for me to stop taking the doxy. He said that the doxy and treatment for lyme might be damaging to my health.
I still have an appt with my LLMD in Sept. I just don't know what to do. Here is a list of my sympotms all of these come and go:
migrating muscle pain pain around joints and in joints muscle twitching and jerking (usually at night) bladder pain sensitivity to light (usually at night) headaches back pain heart palpitations rib sensitivity fatigue breast pain disturbed sleep dizzinesses Achilles' tendon stiff in mornings
Please tell me what you think. Now I think that I am going crazy. I have had 2 titers ran and both came back (-).
The thing I don't understand is neither had IgG or IgM listed. The last one I had ran was a serology.
None of my symptoms started till my doctor gave me dexamethasone July 15th. My symptoms have been going on for a little over 1 month.
I am starting to think that I am crazy or it could be something else.
Thanks for any comments.
-------------------- We are their voice, Please spay and neuter! Make adoption your first option! Posts: 61 | From Alabama | Registered: Aug 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey disc...
Sounds like you've been given the infamous "NO Lyme" diagnosis by someone who actually believed a Lyme test result!
WOW! Is that a rare duck or what these days to try to pass that off?
Does he REALLY think his patients are THAT stupid?
OR...
Is he friends with the guy who sold Jack the Beanstalk beans?
What a DOPE!
Ka... raise...eeeeeee!!!
Now don't you fret about this display of their ignorance. It continues to happen all over the place... not just to you!
Just recently I read a medical article.
It was about a woman in NJ. She had a tick bite in an endemic area. Had the rash. Had a positive blood tests and multiple Lyme symptoms.
And they COULDN"T figure out what was wrong with her!!!
Duh and DOUBLE duh!!!
So YOU aren't the crazy one here... it is the white coats with IDSA stains on them that are!
BTW- I know a doctor who wondered if he had Lyme. He went to another doctor... cause he was in a BIG time endemic area.. had multiple tick bites... symptoms and a rash. His doc said it is probably Lyme.
He ran the cheap-o tests... famous for being wrong... and gave him the same 3 weeks of doxy you got to take... just in case.
A few days later the test came back negative... NO surprise there because he took it too soon to start with. So the doc called the other doc and said, "you don't have Lyme- stop taking the doxy."
That is when the Lymed doctor contacted me to find out what to do.
He kept taking the doxy... got tested at a good lab.. had very positive tests... and contacted his doctor to tell him.
His doc still refused to give him the proper amount of doxy... so he had to go to another doctor to get it.
So even doctors are getting wrong information. So sad!
Now here is the good part.
A LLMD isn't JUST a LLMD. They are regular doctors too! If it isn't Lyme.. they will know. Not everything is Lyme.. and they do consider and test for other explanations. None of them wants you to have Lyme.. so they are always looking in other directions to be sure you are ok.
So keep your appointment with the LLMD and let someone with some sense decide. Someone who knows both how to be a good doctor.. and a LLMD.
As for the ID duck. Might want to call your doctor's offfice and ask if the ID duck is seeing patients from jail.. or is he still out and about doing damage to the unsuspecting?
NO.. don't so that. But it is a thought to help relieve some of the frustration of seeing the horrible way people are treated. UGGGGGGGGGGG!!!!
Hang in there. It will get better. A LLMD will actually KNOW what they are doing.. not just have a medical degree and a head full of hot air.
PS.. I let you slide this time. But if you ever mention being crazy again.. I'll have to REALLY tease you about that one!
posted
Thanks Tincup. That makes me feel a lot better.
At least I know that I am not alone.
-------------------- We are their voice, Please spay and neuter! Make adoption your first option! Posts: 61 | From Alabama | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================== =====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
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:
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
A synergistic formula of 6 rainforest botanicals which are traditionally used in South America for syphilis (a type of spirochete bacteria) and other bacterial conditions.* This product was featured in an article by the Health Sciences Institute (see page 4).
Third-Party Published Research* - links to research articles
poster's note: while few get well without attention to nutrition and supporting the liver and adrenals with specific supplements, anyone considering complementary approaches should be sure to have first read the abx protocol for a better grasp of the task at hand.
Basic, supportive herbs to "get the body stronger" are NEVER enough to get over lyme or coinfections. Very specific attention must be paid to the nature, life-span and forms of each tick-borne disease (TBD).
Each infection is treated differently and it is no minor undertaking. It is best to seek guidance with skilled professionals who are truly lyme and TBD literate. They will know, specifically, how to proceed.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi discdogger,
IF I were you....
I would continue taking the medication your doctor prescribed for you. I'd also keep my appointment with the LLMD.
Lyme denial is rampant in Alabama, but if you'll find the Lyme case counts for the state, you'll realize over 32% of counties are endemic for Lyme....about 10 counties are only one case from being endemic. ..and this figure is based on incomplete data from 1991 through 2006. Lyme counts were recorded starting in the 80's, but I havent' been able to get my hands on them yet. Remember, under-reporting is common.
Have you seen the Lyme disease abstracts about Lyme in Alabama? Here's the link:
Another thing, please be sure to get a copy of all your test results and the doctor's notes for your own medical file at home. This will start a paper trail that is essential.
Don't settle for a piece of paper that says, "Your test results were negative." Get the one with the name of the lab and get all pages of the report.
It the lab report form says "page 2 out of 3", be sure you also get pages 1 and 3 of the report. You need your complete test results. Your actual test results may surprise you.
Lyme disease is alive and well in Alabama. So are coinfections, such as bartonella, babesia, Rocky Mountain spotted fever, ehrlichia, and mycoplasma...there are probably more.
Also, the deer tick is endemic to Alabama. There's a CDC map with this information at:
Dr. Mullen found the Lyme bacterium in many different hosts and tick species and tick life stages in Alabama back in the early 90's. Dr. Mullen is an entomologist at Auburn University who believes Lyme disease is endemic in this state based on the tick data alone.
AL Extention Service: Albama Ticks & Tick Control 1997 mentions Lyme disease & deer ticks facts
Disclaimer: Seek the opinion of a medical profession. Don't take my advice as medical opinion..it's only my opinion.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
please dont see an id doc they wont help you..get to an llmd and fast..you sound just like me when I had it acute many years ago..
Posts: 593 | From long island ny | Registered: Apr 2006
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-------------------- We are their voice, Please spay and neuter! Make adoption your first option! Posts: 61 | From Alabama | Registered: Aug 2008
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