Get PROPERLY tested for Lyme Disease!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Whitey
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Get PROPERLY tested for Lyme Disease!

Post by Whitey » 8 years ago

My brother was treated for CCSVI here in Tychy, Poland on Sunday. They didn't find very much on the doppler or MRI but were able to find blockages during the venography, and he received balloon angioplasty.

When we got back to the hotel, he was informed that the blood test results showed a positive for Lyme Disease. He was tested for it in Manitoba years ago and was told it was negative. He's had MRIs and they all showed lesions on the brain.

Apparently there are two different types of tests, one which is 70% accurate and cheap, and one which is 94% accurate and a little more expensive (we paid about $150 for it here in Poland).

MAKE SURE YOU ARE TESTED WITH THE WESTERN BLOT METHOD. Even if you have had a negative in the past, you must have this test done before going for treatment. I'm not sure if this is the one done in Canada, or even if you are able to have it done in Canada. If not, it's worth traveling to the US or another country to have it done.

The symptoms for Lyme Disease are: Fatigue, Vertigo, Bladder Problems, Arthritis, Headaches, Numbness and tingling in the hands and Feet, Cognitive Impairment, Weakness in the Legs, Awkward Gait, and Facial Palsy, to name a few. Sound familiar?

The treatment for most is 1-6 months of antibiotics.

Get properly tested.

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sbr487
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Post by sbr487 » 8 years ago

can lyme result in brain lesions?

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ttt1
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Post by ttt1 » 8 years ago

sbr487 wrote:can lyme result in brain lesions?
yes, of course
http://en.wikipedia.org/wiki/Lyme_disease#Imaging
"Abnormal magnetic resonance imaging (MRI) findings are often seen in both early and late Lyme disease.[citation needed] MRI scans of patients with neurologic Lyme disease may demonstrate punctuated white matter lesions on T2-weighted images, similar to those seen in demyelinating or inflammatory disorders such as multiple sclerosis, systemic lupus erythematosus (SLE), or cerebrovascular disease.[105] Cerebral atrophy and brainstem neoplasm has been indicated with Lyme infection as well.[106]"

and plenty of other conditions can cause lesions too

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IHateMS
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Post by IHateMS » 8 years ago

sbr487 wrote:can lyme result in brain lesions?
or spinal lesions only?

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walcat
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Post by walcat » 8 years ago

Thanks Whitey, I found that very interesting! I was bit by a tick about 3-4 years before my first MS attack. I live in Idaho where there is a small percentage of Lyme Disease.

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Post by 1hunter » 8 years ago

My nero says possible MS, but i went to a Dr. that specializes in Lyme disease. He is positive i have lyme disease, My nero had tested for that and the tests were negitive but he said most of the labe are not sensitive enough. He sent a sample to a lab in Calf. and that test was positive. I really dont know who to believe. Getting tested for CCSVI may help...

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Whitey
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Post by Whitey » 8 years ago

If you tested positive for Lyme Disease, then you should first get treated for lyme before you go any further with CCSVI. Almost all of the symptoms are the same as with MS, so it's possible that you don't even have MS.

The treatment is a few months of antibiotics. If you don't get better, then you likely have MS. I wouldn't take the chance, get the antibiotics.

In my opinion, everybody with MS should get PROPERLY tested and/or treated for Lymes Disease before going on MS drugs or CCSVI treatments. The earlier you catch it, the more likely you are to get better.

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Post by NotFound » 8 years ago

Whitey wrote:If you tested positive for Lyme Disease, then you should first get treated for lyme before you go any further with CCSVI. Almost all of the symptoms are the same as with MS, so it's possible that you don't even have MS.

The treatment is a few months of antibiotics. If you don't get better, then you likely have MS. I wouldn't take the chance, get the antibiotics.

In my opinion, everybody with MS should get PROPERLY tested and/or treated for Lymes Disease before going on MS drugs or CCSVI treatments. The earlier you catch it, the more likely you are to get better.
Yes, to getting tested for Lyme

However, everything is not quite that simple. I am now fully immersed in the Lyme community (after testing positive for Lyme in Tychy at the end of May)

1) Western Blot that Dr. Kostecki runs (and many other doctors) in NOT 94% accurate. As a matter of fact there are currently NO tests for Lyme that are that accurate. Although combination of tests if often used and has been successful in identifying Lyme.

2) It's NOT "just a few months on antibiotics" In case of chronic Lyme (and when it resulted in brain lesions it is damn chronic) - some people stay on aggressive antibiotic regiment (and I mean - aggressive, as in - you are hooked up to the IV 24/7 for several months, then alternating with oral and intramuscular antibiotics). Borellia is VERY hard to kill. 1-6 months would be for a "freshly bitten" person.

3) If you don't respond to one type of antibiotic, does not mean you don't have Lyme. Some people do not respond to ANY antibiotics

4) Lyme seems to be just as controversial as CCSVI :roll: Doctors have been de-licensed for prescribing long-term antibiotics.

5) Majority of LLMDs (Lyme-Literate Medical Doctors) do not accept insurance

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Post by 1hunter » 8 years ago

Yes everything you said is what my Lyme Dr. is saying, also he does not trust any labs except for 2 in the whole country. It is just so controversial..... never the less that is the path i'm on now, been on antibotics for 5 months.
My case is somwhat different because my symptoms are very mild, almost non existent, because the tests do test for antibodies and not the actual lyme bacteria it could be that i had lyme in the past..
If you go on the lyme boards there are people that are suffering for years!! and are not getting better, i just wonder if they really do have Lyme Disease or not. Just not sure i totalally trust the Lyme Dr.'s and the "special labs"
The worst thing for me is worring that i actually do have MS and not knowing if and when it will attack. I will be getting a followup MRI in 2 months and that may help tell what is going on.

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Post by aliyalex » 8 years ago

after my MS dx, I was tested in Ca lab for lyme and it was positive after Quest test was negative. I believe that multiple opportunistic infections, plus heavy metal toxicity, plus genetic predisposition, and venous irregularities contribute to my 7.5 EDSS.

my lyme doc explained that the microbes like to collect in the lymph of the neck, but that that tissue is very dense, so they hop to the jugulars, where there is much rich blood.

i've been clearing infections before CCSVI, plus a few other things to hopefully lessen chance for restenosis post liberation.

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BELOU
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Lyme

Post by BELOU » 8 years ago

Hold on guys! I had my first episode 6 years ago, numbness (active lesion) and then 2 weeks after, gone. Now I can fell some numbness at the same place. Come on... Tell me that it could'nt only be Lyme desease.

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1hunter
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Post by 1hunter » 8 years ago

The Lyme Dr. i go to would say it is very likely lyme, depending on testing and your exposure.

I have a cabin in northern wisconsin, i get ticks on me every weekend. That combined with the testing is why he says Lyme. It's just that the GP and Nero dont think so..

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Post by aliyalex » 8 years ago

this represents another paradigm/turf war with patients in the middle. i've been in lyme treatment for 6 yrs. i just have to pursue what i believe is my deepest healing, even if it is revolutionary.

i bet you all or most can relate.

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1hunter
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Post by 1hunter » 8 years ago

aliyalex,
After 6 years of lyme treatment and not getting better do you still believe it is Lyme, or do you think you have Lyme and MS?

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NotFound
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Re: Lyme

Post by NotFound » 8 years ago

BELOU wrote:Hold on guys! I had my first episode 6 years ago, numbness (active lesion) and then 2 weeks after, gone. Now I can fell some numbness at the same place. Come on... Tell me that it could'nt only be Lyme desease.
It could. It could also be Lyme + some thing else. Yet, it could have nothing to do with Lyme at all.

Oh, and Lyme disease is anything but "only". I agree with 1hunter - many people suffer greatly.

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