posted
I was diagnosed with a demyelinating lesion on my brain stem on 1/21/07.Produced dizziness and nystagmus.Dr. did all of the tests (MS,Lymes,Lupus etc)My lumbar puncture came back normal, but high end of normal.So he wanted to do an MRI of spine. The cervical spine clear,awaiting for the thoracic spine (he forgot to review this with me!)So,my first blood test came back + for Lymes, western blot negative.This was not a "fresh" sample so I had him retest and I have IgG bands 41 and 66, IgM band 41.I was bit by "something" last spring or the spring before. Total muscle and joint aches, for 2 weeks. Fever the first night. No rash. Since this episode, alot of muscle pains off and on, especially in gluteus, thighs and calfs.The last 48 hours I have swollen gland under armpit, and tender in inguinal area (same leg that was bitten) I have waxing and waning joint aches, but when they hit, it hurts! I had heart palpitations in Dec.and a syncopal event 01/03/07.I have had many "ear ache" episodes today. The month before the "lesion", pain in the leg that was bitten and shooting pains in some toes that felt like gout. Even though he stated this "lesion" looks like lymes,I know my Dr. still thinks it is not Lymes and he will brush me off to Infectious disease, who I am sure are not LLMD's.Since I do not have any other symptoms of MS, he is not going to dx me with MS, although I think he feels it may turn into MS. Any ideas of a LLMD in Michigan? Any thoughts or similar episodes of symptoms? Thanks!
-------------------- PharmGirl Philippians 4:4-6 Posts: 3 | From Michigan | Registered: Mar 2007
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bettyg
Unregistered
posted
welcome pharmgirl to this board; you will learn a lot. MANY here with both MS/lyme diagnosis.
i'm going to send you my PM, PRIVATE MESSAGE, 46 pages newbie links/advise.. in there should be 1-2 links about MS/lyme too.
i'll also send you a PM, mich llmd info!
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
All symptoms sound like my experiences with pre-lyme dx.
I would pursue the llmd route, and post on "seeking doctor" forum, here. It was easier for me to find a knowledgeable, experienced, & open minded doctor, than to try to "sell"/"convince" the primary on uses of tests, seronegativity, etc..
Bartonella can also cause a few of the symptoms you mentioned, so you need the llmd,who will treat for more than lyme, should they determine that to be the case.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
From what you say, I think Lyme is very likely! I wouldn't even consider MS, given your description being "hit by something"- the sequence is similar to what happened to me. (click link for my experience) It was hard for me to get tests, and the tests I did get were supposedly ..'negative'... for lyme. They ("regular" docs here) didn't even know to test for co-infections.
I was lucky, though, in that I had seen the ticks, and had a typical lyme rash around one of the bites. As a result, I was actually ..'treated'... with a short course of doxycycline, but this 'treatment' was too weak in my case, probably because I had the coinfections babesia and ehrlichia, too.
It is imperative to find a "LLMD"- a lyme doc who really knows tickborne infections. You may be in for the fight of your life, but stay cool and do everything you can to optimize your chances! Best of luck to you! (it appears that, fighting lyme, you evidently need a hefty dose of THAT!) DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Pharmgirl. Welcome! I second all the advice above. I have multiple brain lesions too, and had a neuro who refused to consider lyme despite a known bite and rash.
It's imperative you find an LLMD and start treatment.
Otherwise, things will likely get worse.
And even in treatment, they'll get worse before getting better, but they WILL get better!
If you had a GOOD lab doing your tests I suspect you'd have far more positive bands. The lab your doctor used likely doesn't even test for some of the most specific bands there are! They completely omit these bands on the pretext you might've had the lyme vaccine...
__________________________
"But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990). ___________________________________________
So if you're doing testing, an LLMD would only use a good lab like IGeneX.
Your regular doc will not even THINK of testing for co-infections despite their prevalence. And some of them can be harder to get rid of than lyme!
Hope you can find an LLMD soon. About half of lyme brain lesions disappear following antibiotic treatment.
Oh, and FYI, "lyme" doesn't have an "s" on the end. (Just letting you know since it is going to become a frequent part of your vocabulary!)
The best to you, and do post often!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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infection (bacteria, virus, fungus) immune system toxins
but the testing that can distinguish Lyme from CFS from MS are not definitive, so it can be diffucult to know what to do.
seeing an LLMD is a great idea because they can take care of some of the possible infections like borrelia, mycoplasma, babesia, etc...also possible fungal infections that can develope from antibiotic therapy.
alos seeing an MS specialist is good idea especially since you do have an MRI lesion. there is a good docs list at:
there is message board where there are many people trying this treatment and will know other DRs willing to try this treatment (there is ine near Detroit, MI infact) at:
and also there is the methylation/glutathione pathway block theory. this is one of the body's ways of dealing with toxins and there is a DR in Maine that is pioneering a treatment for Autism and CFS (among others) that involves jump starting the methylation cycle to help the body better deal with infections and toxins. info on the message board at:
also, there are a few DRs who are using the IVIG treatment as a way to also help regulate the immune system. i know of one in CT if interested.
let me know if you need any help trying to track down wny of this info.
thanks bill
Posts: 127 | From MA | Registered: May 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E ~! ! ! ! ! !*)*!)!)*!)!*)!*!*!)!!!!!!
Get a good LLMD*)!!!!!
Even if you have to travel- but I would contact your local support group and see if you can dig one up near you!!!!!!!!!!!!!!!!
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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