LymeNet Flash: Does anyone else have an MS diagnosis?

This is topic Does anyone else have an MS diagnosis? in forum Medical Questions at LymeNet Flash.

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Posted by kare (Member # 5041) on :

Just wondering - I do and am getting scared. I've been on oral abx for a little over a year and (2.5 mo. of IV Rocephein) and just started IV Zithro. Really no improvement - I have MRI with lesions and a dx of MS from a Neuro who does not want to hear about LD! I just came back from an Orthopedist who tested my reflexes (4+) and he noticed that I have a spastic gait. He said that I look like MS to him. I am so confused - any help would be greatly appreciated.

Posted by sapphire (Member # 4599) on :

if you havent herxed on the antibiotics MS is a porobable diagnosis
lyme can also cause lesions though
did you have a positive lyme test? talk to a LLMD

Posted by kare (Member # 5041) on :

yes I tested positive for IGM Western Blot through Ignex, Babesia and Mycroplasma were positive also. Yes I am seeing a LLMD. I am so scared though. (I did get a real bad "herx" on the IV Rocephin - constant shaking) But I'm not sure it WAS a herx because I developed an allergy to the Rocephin after 2.5 months???

Posted by SAK (Member # 7387) on :

I can understand your frustration. I was diagnosed with MS and just got tested for Lyme. I was positive with Igenex and Bowen tests.

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!

------------------
SAK
(formerly ssaakk123--
but it was too long!)

Posted by Monica (Member # 224) on :

If you have positive test results from Igenex, then you have the diseases shown.

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.

Stay away from the ducks and stick with your LLMD.

Posted by krazykt1 (Member # 3739) on :

Try treating for systemic yeast. This can very possibly be the culprit. I got worse on abx (altho I herxed like crazy) I think it was/is the yeast.

Posted by kare (Member # 5041) on :

How do you treat for systemic yeast?

Posted by krazykt1 (Member # 3739) on :

I use coconut oil and garlic, but the doc can prescribe difulcan, nystatin etc.Oil of oregano is good too.
www.thecoconutdiet.com

Posted by Pocono Lyme (Member # 5939) on :

Have you been treated for the coinfections? I also agree that you may need something for yeast.

Posted by janet thomas (Member # 7122) on :

Have you considered getting a 2nd or 3rd opinion??? From another LLMD, not more ducks, quack,quack, pay them no never mind.

[This message has been edited by janet thomas (edited 31 May 2005).]

Posted by quic (Member # 5262) on :

It doesn't appear that you've been treated for babesia.

Posted by Tincup (Member # 5829) on :

Don't let the ducks make you nuts!

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!

Posted by Smokey (Member # 1169) on :

Kare
Don't give up. Many who have been on Rocephin did not see any improvement or a Herx for 4 or 5 months. I never had really noticeable Herxs on Rocephin.

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

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Posted by brainless (Member # 6771) on :

When I was 10, my family doctor told me he thought I had the beginnings of MS but I was much too young.

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

Posted by Troup Brazelton (Member # 6297) on :

One thing is for sure, abx can cure lyme and there isn't anything that cures MS. Unless someone would consider changing a dx from MS to lyme as a cure!

Lyme infused in brain cells become hard to cure. Minocycline and a mepron could be used after any coinfection is cleared up as that is the latest and greatest. In fact, the MS expert at Johns Hopkins is studying its effects on MS as I read on this board around the first of the year.

Posted by kare (Member # 5041) on :

Thank you all so much - I needed that! I am really trying to be strong, but sometimes it's hard - as you all know!
Best wishes and good health to ALL.

Posted by slm214 (Member # 5913) on :

Why don't you look up David Wheldon, a microbiologist in the UK who treated his wife's MS with an antibiotic regimen and she is almost 100% better!!! She was using a cane. He is using some antibiotics we do not have, but mentions the substitutes.

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.

Good luck--get rid of your Lyme first. The MS treatments are almost as bad as the disease! The CRAB drugs must be injected, cause skin breakdown of the injection sites, cause depression, liver damage, etc.

Posted by Michelle M (Member # 7200) on :

Hi Kare. I was in the same boat while awaiting my first LLMD appointment and testing. Please get a FULL workup on your MS thing while pursuing your Lyme treatment. I too have multiple deep white matter lesions in my brain and my worst Lyme thing is relentless migraines. My neuro workup includes the MRI, evoked potentials testing, and lumbar puncture. Despite all those being abnormal, they weren't quite abnormal "enough" to warrant a full MS diagnosis.

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.

Michelle

Posted by kare (Member # 5041) on :

Michelle

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

Posted by Monica (Member # 224) on :

I would just like to add that I do not have MS, I have Lyme, and I cannot tolerate the heat at all. There are many of us here on the boards who can't either.

Posted by Michelle M (Member # 7200) on :

quote:
Originally posted by kare:
Michelle
What are you sx - do you have a problem with balance? Walking?
What are you being treated for?

Hi Kare. Nope, all lower extremities were fine, though I had abnormal evoked potentials in my arms. I was treating at the neuro due to horrible headaches; several docs convinced me to finally have a brain MRI. The MRI found multiple white matter lesions but the radiologist thought they were most compatible with Lyme disease. Sadly the neuro was too much of a duck to know how to test me correctly -- if it hadn't been for this Board I still wouldn't know I had Lyme. Did you do a spinal or evoked potentials? I'm betting all your problems are Lyme problems. Email me! Good luck!

Posted by krazykt1 (Member # 3739) on :

Hi kare,

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)

Posted by DeniseS (Member # 7276) on :

[QUOTE]Originally posted by slm214:
[B]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.

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.

That said, I love the heat too!

Posted by Gabrielle (Member # 5329) on :

I'd like to tell you the story of a friend of mine.

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.

Gabrielle

Posted by JustMeInCT (Member # 7237) on :

Kare, your situation sounds a lot like mine.

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.

Good luck