posted
Hello everyone, I've been reading alot the last week or so after getting my wifes test results back. Now I'm what to do next? Her results for IGM were positive in bands 31 had 3+++'s and rest had one + 39,41,58,66,83-93 and 23-25 was ind. What I got out all of this after reading was that she is positive but the family doctor is still not agreeing on it. This is also the doctor that would not give her this test and had to pay out of pocket to get it done. He started her Monday on doxycycline 100mg 2xday. We are looking for a specialist in the area that covers Aetna insurance so we can take her. Not sure what to do next? Any help would be greatly appreciated. Just to give some background. She started out with flu like symtoms for about 4 days and a headache she couldent get rid of. Then she had 2 days of seizures about 9 total in the 2 days. They put her on seizure medicine and did all kinds of tests with everything coming back negative. She lost alot of her memory, dont know if from the seizures or the Lyme Disease. Now short term memory is hit and miss. Numbness of body parts and not the nicest person lately but just trying to get through all of this. Again any help greatly appreciated. Thank You
Posts: 13 | From Montgomery, PA | Registered: Nov 2008
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posted
WB is pretty reactive - sounds like Lyme. Go to the forum "seeking a doctor". Not confident your insurance will cover. Get her to a LLMD and on a higher dose of Doxy. 100mg 2x a day will not help - see Dr. Burrascano's guideline (treatment guideline) in the "newbie package" link here. Don't mess around and get real help ASAP. OK -p
Posts: 641 | From So. CA | Registered: May 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I hope you can find a doctor who is a lyme expert to get your wife on the right track.
Yes, lyme frequently causes seizures. I am no stranger to that. I cannot take seizure meds though and do so much better using a good quality of magnesium and B-6. Fish oil, too.
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.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of 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
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
That is definitely lyme. Please find her a lyme literate doctor. I hate hearing of another person having to suffer from this horrid disease.
If she's just now starting to have seizures they are most likely being caused by the lyme and/or a co-infection. I know Bartonella many times is what causes seizures in lyme patients.
Please, please, please find an LLMD for her. Otherwise she will not get well - 100mg of Doxy for a few weeks is NOT enough.
PS - Pennsylvania is #2 for having the most lyme cases/people infected with lyme.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thank You all so much for all your help. We are in process now of finding a LLMD. Just hope they will take my insurance.
Posts: 13 | From Montgomery, PA | Registered: Nov 2008
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Dawnee
Unregistered
posted
Thats Lyme disease and she is being under treated!
Aw... I know how the "not so nice" bit goes..I'm the same way. Remember, she really can't much help it. *hugs*
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toby67
Unregistered
posted
she's so lucky to have you - i don't know what i'd do without the awesome support from my hubby!!!
he stays patient with me through my bartonella, which from her seizures, your wife probably has. It can make her really moody and mean, so watch out and know it isn't really her...
do everything you can to find a LLMD, it will make all the difference - and do the low carb diet and add supplements. omega, vitamin b's, coq10...good luck! please keep us posted!
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posted
here's another person who the ...'standard'... treatment for Lyme, 100mg doxy twice a day for 6 weeks, did not do much for! It wasn't til I got a "LLMD" lyme doc and got on higher antibiotics doses, and some herbal treatments, as well, that I made much progress. For me, the biggest expense was the antibiotics-- some of the ones I was prescribed had no generic forms, though I was able to get them at half the cost or less, from Canada. But I didn't have the energy for my usual deal-finding! So I sure burned through alot of dough with lyme-etcetera treatment! I had to take atovaquone (for babesia) too- that sure wasn't easy to find at a reasonable price! Some of the med combinations were pretty strong; thus I had to spend some energy on "treating the side effects of the treatment" Well, I wish you the best possible luck with it ... DaveSPosts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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adamm
Unregistered
posted
BTW--this early on, she needs to be on at least 400mg of the doxy/day. Anything less will fail and ensure that she develops lifelong illness. Ideally, as hers is a neuro case, it would be IV Rocephin, but you probably wouldn't be able to get that.
quote:Originally posted by ejh2205: Hello everyone, I've been reading alot the last week or so after getting my wifes test results back.
Now I'm what to do next? Her results for IGM were positive in bands 31 had 3+++'s and rest had one + 39,41,58,66,83-93 and 23-25 was ind.
What I got out all of this after reading was that she is positive but the family doctor is still not agreeing on it.
This is also the doctor that would not give her this test and had to pay out of pocket to get it done. He started her Monday on doxycycline 100mg 2xday.
We are looking for a specialist in the area that covers Aetna insurance so we can take her. Not sure what to do next?
Any help would be greatly appreciated. Just to give some background. She started out with flu like symtoms for about 4 days and a headache she couldent get rid of.
Then she had 2 days of seizures about 9 total in the 2 days. They put her on seizure medicine and did all kinds of tests with everything coming back negative.
She lost alot of her memory, dont know if from the seizures or the Lyme Disease. Now short term memory is hit and miss.
Numbness of body parts and not the nicest person lately but just trying to get through all of this. Again any help greatly appreciated. Thank You
She is highly positive ... please find her an LLMD!
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