Get PROPERLY tested for Lyme Disease!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Whitey » Fri Jul 02, 2010 10:09 am

It's entirely possible that it could be Lyme + something else. As I said, my brother was treated for CCSVI, and they found some stenosis. We'll never know if it was truly only MS, Lyme, or a combination of both.

Hell, for all we know, MS/CCSVI could be triggered from Lyme, or perhaps with lack of feeling, a tick bite could go undetected more easily.

The point is, if you do have Lyme Disease you need to be properly tested and treated. If you rule that out, then you know it must be something else, and can confidently pursue MS treatments and/or CCSVI treatments.

If we had known about the Lyme disease befofre we made our trek to Poland we could have saved about $10,000 and 5 years of MS treatments which don't do very much. I'm only hoping to save other hassle, money, and suffering.
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Postby NotFound » Fri Jul 02, 2010 10:26 am

Whitey wrote:
If we had known about the Lyme disease befofre we made our trek to Poland we could have saved about $10,000 and 5 years of MS treatments which don't do very much. I'm only hoping to save other hassle, money, and suffering.


My sentiments exactly :(
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Postby 1hunter » Fri Jul 02, 2010 7:47 pm

My lyme dr said MS is actually late stage lyme... I dont believe that but i do believe some people that think they have MS actually have Lyme....but i think some long term lyme people that are told have they have Lyme actually have MS
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Postby aliyalex » Fri Jul 02, 2010 8:53 pm

after following my body for these years with different lyme protocols, i understand how complex chronic neuro lyme is. the body's ability to detox is an important factor, of which mine is not very good. too many times i saw the microbes get killed off only to learn that there is an art to clearing the die off.

the presence of the die off which made the exact neuro symptom recur, was significant as to the etiology.

also the co-infections in the tick are often worse than the lyme bacteria. there are protozoa, other bacteria and with MS, viruses are always involved. it is very complex when it is chronic.

i treated babesia (malaria-typed protozoa) for the last 10 months and went from constant night sweats and more and hyperthyroidism to feeling cold in Colorado winter and taking half the thyroid medication.

it is no an easy path, but i hope it helps prevent restenosis, if i can ever get liberated. BTW, it is interesting to me that the die off came out my cheeks and chest near arm pits. they felt like sand paper for months. i used many binding agents and finally it is mostly clear. my heat intolerance is so much better.

as it was said earlier, lyme is another paradigm and there are those who get very threatened and angry from mentioning it, not unlike CCSVI, but probably more so. CCSVI, to me presents more black and white than lyme borreliosis.
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Postby NotFound » Fri Jul 02, 2010 10:04 pm

1hunter wrote:My lyme dr said MS is actually late stage lyme... I dont believe that but i do believe some people that think they have MS actually have Lyme....but i think some long term lyme people that are told have they have Lyme actually have MS


See, the very definition of MS is not the definition of illness, but a definition of symptoms - presence Multiple Scleras (aka - lesions).

Can Lyme cause multiple scleras? Definitely. Can CCSVI cause multiple scleras? You bet.

I think we are slowly peeling the mystery onion of the causes for Multiple Sclerosis.
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Postby NotFound » Fri Jul 02, 2010 10:11 pm

aliyalex wrote:after following my body for these years with different lyme protocols, i understand how complex chronic neuro lyme is.


Alex, you seem to be ahead of the game. Where as CCSVI testing was my first step to trying to figure out this MS puzzle and I am looking into Lyme only now, you are already looking into both.

Thank you for sharing your experience.
Last edited by NotFound on Fri Jul 02, 2010 10:20 pm, edited 1 time in total.
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Postby elyse_peace » Fri Jul 02, 2010 10:13 pm

Hi All -
I have both diagnoses. First, Quest tests (a few over 2 or 3 yrs.) found me negative for lyme. After a fall that messed my dominant hand forever, went to a nuero, dx was ms. A few years later, I went to a doc in CT, who turned out to be a "Lyme Literate". He sent blood test to a lab in CA (Igenex), which only tests for tick-borne pathogens.
Finally went to local lyme expert to get his opinion: Lyme, yes or no; MS, yes or no. In his opinion, both.
A friend who was being treated for lyme (not ms) had lesions in brain.
I have been on antibiotics for 6 yrs (oral 6yrs, IM 2yrs, IV for 4yrs).
Hope this helps with this confusing subject. :)
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Postby elyse_peace » Fri Jul 02, 2010 10:20 pm

Oh, yeah. One doctor surmised that I had lyme first, which facilitated ms happening. Another doctor figured the ms was there first, enabling the lyme.
Go figure!
:lol:
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Postby aliyalex » Sat Jul 03, 2010 12:08 am

IMHO, MS is a collection of symptoms, etiology unknown. We are beginning to understand the vascular association, which is filling in some missing pieces. Multiple opportunistic infections and heavy metal toxicity add more to the puzzle.

My lyme doctor is brilliant and a CNS specialist. He gets sent the cases that failed other lyme literate and neuro docs.

I was scheduled for my 1st Avonex injection and cancelled at the last minute. I just couldn't be comfortable suppressing my immune system. It was like when my car engine light came on, disconnecting the light. CCSVI made so much sense to me, filling in the blanks. My lyme doc was right there with me. He had no investment in being right, he just wanted me to get better. I was already 8.5 on EDSS. No time for complacency.
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Postby Whitey » Thu Aug 05, 2010 3:49 am

Just an update (and bump for the new members).

My brother has just started his treatment for Lyme! He is feeling better after the CCSVI procedure, with more energy and less brain fog than before. He is able to drop some of his meds for energy and is doing great. I'll update when we know more about how his Lyme treatment is going!
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Postby Merlyn » Thu Aug 05, 2010 1:05 pm

Dr. Lyn (Dr. Lyn Hanshew) was my physician when I lived in Seattle... she says this is the best treatment for Lyme. Any colloidal silver makes me feel deathly ill, I am not sure why. I seem to be allergic to silver, it turns my skin totally black if I wear silver jewelry.

http://www.resultsrna.com/products/acs_ ... orferi.php
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Postby Merlyn » Fri Aug 06, 2010 3:47 pm

For us laymen, it is very hard to figure out personal etiology. There are so many things that affect the CNS...

http://excessive-zinc-causes-multiple-s ... ptoms.com/

Even denture cream seems to cause MS symptoms in some.
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Postby Filmmaker » Sat Oct 30, 2010 4:10 pm

I have been told I had MS and then I have lyme... the thing I believe is that Lyme is a first infection that can lead to the second one named MS... there is one big difference: Lyme causes white lesions on the brain while MS causes black holes on the MRI (meaning iron deposits...as seen by Dr Zamboni...). So if you have white lesions, get tested and treated for lyme , if you also have the black ones... then uh...this is another big battle... (Iwent the natural way for that...) I also think Lyme is an underlying infection leading to parkinson (except that PD affects the cerebellum while MS affects the brain) ... did you know that M. J Fox had a lyme diagnosis years before his parkinson disease?... i think that's interesting and because these "incurable" diseases are actually a double infection, no immune suppressant will be able to really help in the long term... To me it's as stupid as giving immune suppressants to help dental carries... it might lessen the inflammation pain but the tooth will die anyway if you don't do sth about it...
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lymes

Postby blossom » Sat Oct 30, 2010 7:23 pm

have any of you guys with lymes tried hyperbaric chambers?

there is a lot about it if you googe hyperbaric chambers lymes cure or things to that effect.

some get benefit useing them for ms. maybe it's because they have lymes or both.

i think the dr.'s doing ccsvi treatment in egypt recommend after treatment you use inclined bed and hyperbaric chamber. i a little foggy on that but seems i just read that.

of course here in the states it would be self pay in private clinic. they just got one at the hospital in my home town but since it is not approved for ms or lymes i can't try it. treatments aren't cheap if you can be lucky enough to be near a private clinic. i'm not real convinced that a portable in home model would do the job as they are not 100 percent pure oxygen. i was thinking of trying that route but they are pricey too.

onething for sure, lymes, ms, veins and blood flow seems to have a good chance of being connected. and, it should make a person feel better all that healing oxygen.

but heck, this might work for some and would not involve drugs. they can't let that happen.
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Postby Taurus » Sun Oct 31, 2010 11:41 pm

I am a pwMS diagnosed in December 2008. My investigations include MRI (three times, some lesions in Brain and one in Spinal Cord) My 2nd and most recent MRI showed no active lesion with number and size remaining same as of my 1st MRI). My EVP test showed slight abnormality in left eye test. No Spinal Tap Test Done.
I have one rash in my upper right hand. At the onset of my disease, I had severe itching in the same hand sometimes to bleed limits. My neuro suggested Lyme Test. The result came negative. The following tests were done:
Burgdorferi IgG + IgM ELFA : Negative
Burgdorferi C6 (peptide) EIA : Negative
Burgdorferi IgG Immunoblot : Negative
Burgdorferi IgM EIA : Negative
Burgdorferi IgG EIA : Negative
Once I asked my neuro whether I am confirmed case of MS. He says I am not sure since you had only one episode in last 02 years. He says that I may even have Lyme Disease which was not detected through above tests. Can someone help me. Should I go for another test of Lyme (Western Blot). Please see that I am not on any DMD and is taking Baclofen and Gabapentin for symptomatic treatment. Thanks
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