From what I know, you can't have a positive Western Blot if you don't have Lyme. Do you see any type of improvement of ANY symptom?

For example, I just started doxycycline 2 weeks ago; I had a herx too (I might still), but boy, do I have an appetite now! I was without appetite for years...

So, I think you may need to really look closely at the slightest symptom. Of course, Lyme looks like MS, and docs prefer to say MS over lyme for some reason...

Maybe something's worse, maybe better??
It's really soon, from what I've read. These germs do take some time to go away!

Whereas I suppose it is possible to have MS AND tick borne infections I don't think it is likely. Just my opinion. I too have a spastic gait although no lesions.

With those big fat bills they only see a limited way past their noses... ok?

For example...

I was once diagnosed with fiobromyalgia by a rheumy duck.

I was diagnosed with chronic fatigue by an MD.

I was diagnosed with carpel tunnel by a neuro duck... who missed ALL the neuro symptoms.. such as falling down when the lights go off... and the way I bumped into walls when trying to walk.

I was diagnosed with faking it by an insurance duck.

And I was diagnosed with arthritis by another rheumy duck.

And with dementia by an internist.

And to top it off..

The infectious disease ducks missed ALL 10 infectious diseases.

BIG BOZO IDIOTS!

Sooooooooooooooooooo little Kare...

Hang in there!

Positive tests... unless you are REALLY cool and have figured out how to fake the blood work... means positive.

Don't let the ducks make you nuts!

There are so many Lyme patients that have been DX by ducks with MS, Lyme is known as the great imitator. You have a positive Western Blot, quite a few of us never test positive.

I would talk to your LLMD about co-infections and yeast, but don't give up.

Obviously the Neuro is a duck if he dosen't even want to hear about LD, sounds like the Ortho does not want to have a open mind either.

It just may be if they DX you with Lyme they may actually have to start working for their money.

Are you sure it was an allergy to Rocephin, I know of some patients on it that have to infuse very very slowly and very very diluted.

I hope this helps
Best Wishes
Cindy

In the eighties I was having a lot of problems and asked my doctor if it could be cancer or AIDS. Short story...she said no because cancer and AIDS don't act like this but "MS and Lyme act like this".

I am one (of many) who believes Lyme causes MS.

Get another LLMD's opinion and don't take steroids

Also, are you aware that many MSers take minocycline, as Vanderbilt University has found it to be neuroprotective? It also works for Lyme.

Have you had a lumbar puncture. I would only (after much experience) do it under fluoro (X-ray) with Versed (a wonderful drug for minor procedures). Do not let your garden variety neurologist do it in his office. A neuroradiologist is far more skilled!

One of the old diagnostic tests for MS was a hot bath; if you felt worse coming out of it, you had MS! Can you tolerate the heat? Most MSers really suffer with it. With my Lyme disease, the heat feels fabulous on me. Saunas, steam rooms, and heating pads save me.

I told my LLMD 'Please don't treat me for Lyme if you think I really have MS because I realize some people really DO have MS and not Lyme!'

So it's good to check both things out thoroughly but I'd trust your LLMD and continue your treatment in the meantime -- especially with a positive test! Good luck and hang in there! Don't stress about the MS stuff -- they really are SO similar in presentation, but your Igenex test has taken a lot of the guesswork out of it for you.

quote:

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Originally posted by kare:
Michelle

What are you sx - do you have a problem with balance? Walking?
What are you being treated for?

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1984 1st attack,vision,balance, right leg drag right wrist weak
Dx MS

1997 joint pain,vision,spastic gait, no balance,bullseye appeared.
Dx SPMS

2001-2 worsening of same sx,
Dx pos als

saw llmd did test
2pos bands the rest equiv.
Herxed on abx, put me in w/c (temporarily)
I Have Lyme
So do you (IMO)

But, as I recall from my "MS days" only 50% of MSers can't tolerate heat. And some coinfections cause problems with temperature regulation. And it can aggravate neurally mediated hypotension associated with LD.

She was diagnosed with MS two years ago. She has lesions in her brain. Then, someone told her about Lyme - she got tested and tested positive for it.

She got lots of IV-abx and lots or orals (now since 1,5 years) and nothing ever improved. Her problems just remained the same (main problems: weakness in legs, feeling and walking like being drunk, not clear in head).

Then someone told her to have her teeth checked and gave her the address of a specialist for hidden teeth and jaw problems (a biological dentist). He made an X-ray of her jaw. When he looked at it he was shocked and said he had never ever seen anything like this. There was pus under every single tooth. Also, she had metal deposits in her jaw. His advice was to pull all the teeth and to clean the jaw.

My friend is 38 years old and of course wasn't ready to do this. So she went to get second and third opinions. I sent her to the University Tooth Clinic - they are known not to be for alternative methods but strictly classical. The dentist who checked her X-ray there only said: "Oh my god!" Then he also had no other idea than pulling all the teeth.

She went to two more dentists. They all said the same. Monday this week she had her first 5 teeth (root canals) pulled. It is too early to say much yet about the success. But what was interesting: In the waiting room of the biological dentist she met 3 other people and came to talk to them.

All of them had the diagnosis of Lyme and all of them had lesions in their brain (by the way, the biological dentist says these lesions were mercury). All of them also had no or only little success with abx. Two of them had still been bedridden some months before. Now they are so much better, that they drove alone through half of Germany to see this dentist.

Maybe it would be a good idea to check your tooth situation? (Not everybody has such bad teeth as my fried - don't worry).

GiGi has written a lot about teeth and their impact on Lyme on this board. To be honest, I didn't really believe her in the beginning. Today, I've changed my mind. Teeth can have a very big impact on our health.

All the best to you.

I was dxed for MS in 1997.

As you know, an MS dxed is more about painting a mosaic than the results of a specific test. My Quest Lyme test was negative at the time.

I saw a LLMD in May 2005 and my Igenex test came back positive.

I have 2 appointments to see two LL Neurologists for a second opinion. The future path that I follow will greatly depend on what they say.

I have been on Avonex for over 7 years and I am tired of it. I just want my health back.