This Is MS Multiple Sclerosis Community: Knowledge & Support

Interesting article on the increase in LD. this disease has many of the same symptoms of MS as it can affect the central nervous system; however, it can also affect the joints and muscles.

http://www.msnbc.msn.com/id/19229511/from/RS.3/

Ummm, where is the vaccine? Ohhhhhh, its not made because of poor sales. Imagine that. So would anyone know if this vaccine would cure those who have some sort of chronic infection of Borrelia? I wonder if that vaccine would do anything for those who have certain subtypes of "MS"?

Brock

_________________
History:
Diagnosed 06/05; Nystagmus - Right Eye: MRI Numerous active lesions
MRI 07/06 - No active Lesions
Relapsed 03/07; Right leg, numbness
MRI 03/07 - A LOT more active lesions than the first MRI
Relapsed 05/07; Both Hands, numb; Torso, numb

Viper--from my extensive study/research of this disease--and if my memory serves me correctly--the vaccine had some unattractive side effects. Cannot for the life of me remember what they were...

Thanks for that Chris,
I also saw those statistics about the increase in LD. What is upsetting is the CT Attorney General R. Blumenthal gave a press conference "scolding" the Public Health Department about how they continue to drop the ball on getting reporting of this disease from the labs! What this means in the funding from the Federal Govmt continues to decrease.

Dr. Eva Sapi speaks after him about the need for Federal funding to reasearch the pathogens that are part of lyme disease...22% of ticks carry more than one parasite! Babesia being the most common. She continues to state that to date we only have the means to treat the bacterial infective part of Lyme, we need to treat the parasites!

AG Blumenthal is around the 10min mark and Dr Eva Sapi is around the 18.45 mark.

http://www.ctn.state.ct.us/ondemand.asp?ID=2441
Click on Watch Now

Brock and Chris,

The Lyme vaccine was "pulled" off the market....
Here's an article explaining why--
Conflicts of Interst in Lyme Disease:
Laboratory Testing, Vaccination, and Treatment Guidelines
www.lymediseaseassociation.org/ConflictReport.pdf

Tory--the CDC says LD is under-reported by at least 7 times (adjusted from 10 times). At the time, there were about 29,000 reported cases. If we multiply that # by 10, we get 290,000. If 260,000 of the cases were diagnosed as MS--and we reduced the MS statistics by that amount--what do you suppose would happen to all the attention/funding/drugs MS is now getting??? Doesn't take a rocket scientist, does it?

They have found the one LD bacterial infection and 2 co-infections so far. Many of the characteristics of MS are also true of LD. There is NO definitive test for LD. The CNS symptoms parallel MS symptoms. But if one has other symptoms (as did/does my daughter) affecting the muscles and bones, it could be LD and not MS.

My daughter is being treated for a strep infection--her treatment seems to be working so she is not going to look a gift-horse in the mouth as long as she is doing as well as she is (MS has completely stopped).

There are lots of (big) powers out there who want to keep LD " in the closet".

well imo, I pretty much have to say I agree with the "reason" behind flawed testing.

Have you considered having your daughter tested at IgeneX Labs? They tests for all the lyme bands,,,,
and keep in mind that lyme is a clinical diagnosis!

Lyme disease now is considered to be a pandemic.

Tory--as I said, she actually underwent 6 weeks of LD treatment when she was first diagnosed with MS. (And yes, she had the I Gene test--results equivocal--went to a lyme literate doc.) Then..all those well-meaning folks convinced her her doc was a quack, went to the BEST internist (who stated she "failed" the LD test!) and he then sent her to her current MS specialist in Atlanta.

She appeared to be very accepting of her diagnosis, treatment and doctor (I wasn't). Her decision to try the alternative (natural) treatment really came out of the blue. I was stunned---and THRILLED!!!

I have read enough now about MS, LD, etc. to convince me MS is not the same disease, it is not an autoimmune disease and I DO believe many MSers would probably benefit from some kind of antibiotic treatment. These are just my opinions and they mean virtually nothing. I would rather my daughter's MS stopped as a result of natural treatment any day of the week!

We still live with this retched disease, never knowing when it might rear its ugly head again. For now--it has completely stopped (starting last June). But she has decided if her supplements ever stop working or Dr. B. has nothing more for her to try, she will next go the antibiotic route. Right now...she is doing great so we will just try and enjoy it!

One more interesting story..lady I work with was sent to the leading pain specialist here where I live for fibromyalgia. She told the doc no one had been able to help her. He said, "No one will because they don't know how. In my opinion, most of today's illnesses are from viruses, bacteria and yeast." He gave her 3 supplements and does have her on some kind of equipment that uses electricity to try to rejuvenate the nerves. Anyway, found his comments/treatments really refreshing!

Please keep me posted on your progress. It is a LONG process!

Chris-

Your daughter's story is so familiar. There are so many MS'ers that were told the same thing, but as they became educated found the only "quack" was the untruth regarding "flunking" their tests. One IND is enough for educated lyme doctors...kind of like being pregnant, one either is or isn't!

Which band was IND btw, was it 18, 31, 34? just a few of the specific lyme bands.

I'm glad to know her alternative treatment is working for her; boosting her immune system is soo important.

funny you mentioned Fibro-I just met a gal who for 15 years had a Fibro, RA, IBS, and Sjogren's diagonsis...and has suffered. She too finally decided to see a llmd, got tested (of course was CDC negative) IgeneX positive on IgM did test positive for Babesia (Quest) and is now on antibiotics and beginning to improve!

For her it's been a long time of suffering, and is so happy to know she will improve.

Chris,

Here's another great read regarding both lyme and Cpn. This doctor is from Texas, and for the longest time they didn't think they had ticks in Texas.
http://www.ilads.org/files/harvey.pdf

He speaks on why there is SO much seronegative testing...why most of the sickest people test negative:
why our immune systems can't recognize the bacteria when we are tested.

This was always a favorite read for me, maybe you will find it helpful as well.

the best,
tory

Tory--a few comments on LD. I always found it ironic that LD was "discovered" 30 years ago in Lyme, CT. Do people REALLY believe it just showed up there on day? Uhhhh--doesn't anyone realize it has probably been around for years...just undiscovered.

One clarification...my daughter is being treated for a "bacterial infection", not simply boosting her immune system. She was certain she would come back LD-positive (with Dr. B, her current natural treatment.) Dr. B feels most MS cases are a form of mutated LD. Anyway, when it came back strep, she was shocked. As I said, the strep bacteria is the same class as LD ... a spiroitte (sp?--and I know I spelled that wrong!) It is also the same kind of bacteria as syphlllis. And remember, this bacteria acts JUST like LD. It leaves the blood stream after several weeks, goes to the brain where it can lay undetected for over 20 years!

Again, I would rather have her on natural supplements as opposed to antibiotics. There is apparently a Chinese treatment for LD that is as effective as the antibiotics. Just letting you know in case they pull your antibiotics. This happened to the first doctor Suzy went to for LD. He is in NC, and the medical board has pretty much tied his hands behind his back. He can no longer prescribe antibiotics for his patients. The "witch hunt" mentality--how sad!!!

Please keep me posted on your progress. I have definitely reached the point where I believe this is an infection in MOST cases! Thanks so much for sharing! Chris

yes, Borrelia Burgdorferi has been around since the late 1800's. and yes Syphllis is it's sister bacteria. That alone is scary..

Good to hear your daughter is treating naturally. I think if you looked into the use of long term antibioitcs it would relieve your fear of these drugs. Resistance is imo, a convenient way of doctors who aren't educated in lyme disease to simply not use abx to make us well. The co-infections that go along with lyme disease is as vicious as borrelia, and very difficult to eradicate.

Lyme doctors clinically diagnose us; our symptoms is what gets us into treatment, then the tests confirm it.

We need to have standard testing for lyme.....the sickest of us test negative and we go about our lives carrying this bacteria!

I look forward to reading about your daughter's road back to health,
tory

Tory--the abx don't scare me at all!! Just given a choice, I prefer anything natural if it will help. There is definitely a "conspiracy" against LD for all the obvious reasons. Doctors are supposed to test patients for LD AND inform them about it IF they have the symptoms. This certainly isn't being done at all.

It is a tragedy to have to fight for appropriate/competent treatment when the disease is a "known". It all boils down to the almighty dollar! How tragic!

You are very lucky to find someone who actually treats for this disease. That in itself is very difficult to do. My daughter has already decided if her supplements stop working, she will go the abx route. Don't think she will ever return to any of the MS drugs. They really did not help her...just "masked" symptoms. And the drugs were so potent and the dosage so high...that really concerned me. I would lose no sleep if she was taking abx however.

Please keep me posted on your progress. I am really happy for you and Suzy!