ALS and Lyme

[grossman]

How often is ALS mistaken for Lyme disease?  Is it worthy of having Lyme testing done?  I have bulbar palsy sx for two years and no newer sx, but have dx of  "early, probable ALS".  I live in MIchigan, camp frequently, and have a cabin in the woods we stay at almost every weekend.  My only known bite would have been over 30 years ago, but my chances of recent contact would be above average.  Any advice would be appreciated, thanks.

[cave76]

***Dr. Martz MD was a practising Haematologist until he developed classic signs of
motor neurone disease over two years ago.

He described his own case which has been published in Acta Neurologica. He had some symptoms which were not typical of MND but suggestive of Lyme disease and this lead to him receiving IV Ceftriaxone and Babesia treatment despite negative initial tests for Lyme. ****

http://www.ilads.org/files/2006_ILADS_conference_summary.pdf

After more than two
years of IV treatment he has shown a remarkable improvement. He has been able to
start practice in medicine again, now in the area of Lyme disease.

[cave note: Dr. Martz has closed his practice as of 7-07. Rumors  are that he has regressed a bit. That's JUST a rumor!]

[PlateletGal]

For those people with lyme who have been treated and still have chronic health issues, I would recommend checking into the Marshall Protocol. I know it has successfully treated people with chronic lyme who still had symptoms after the IV antibiotics. If I remember right, the MP now has a patient who had been diagnosed with ALS.

[cave76]

Many people dx'd with ALS, when tested for Lyme, were positive.

Some of those people (after tx with abx for Lyme) get better. Some don't.

(Back to the many unknowns about all these diseases and their complicated interactions, etiologies.)

However, my suggestion (I'm not a doctor, mind you!) would be to get tested by IGeneX, find an llmd who will treat you and see what happens.

Usually the llmd treating an ALS/Lyme patient will start them on IV Rocephin. But I think that most of them now will only rx a lower infusion than the 'normal' one of 2 G. a day.

Something to do with not exacerbating things--- not a scientific explanation, I know.

If it were me---- I'd go for the treatment. There's almost no downside to it (as long as you're under an experienced llmd's care) and there MIGHT to an upside. (That's not medical advice. Just a suggestion to look into it.)

[mzlisaballerina]

Yeah Igenx is the most reliable lab out here really. I would for sure test through that....also join lyme-autism group....its a REALLY good place to get fast anwsers.................sounds like lyme to me.
best wishes!

[patsy10]

A lyme western blot IGG,IGM from Igenex labs.  Google Igenex labs.  There's a 1-800 no. you can call to get a kit.  You just need an order from a doctor.  Lyme IGG/IGM is about $200.  If your doctor ordered an ELISA it is a total waste of time.  That's the first screening test.  Read the post with lyme info from Cave76.  It had a lot of good info.  It's on this lyme forum but a different post.

[Millerman]

So what is the best way to test for Lyme?  I've given blood, had a brain MRI, and now the LP.  What can I do?  I did trim my oak tree for like 6 hours in May and went back and forth to the dump with brush from the oak and wonder if I got bit and never realized it.  Thanks for the info.

[patsy10]

No the LP is very unreliable.  I think it shows positive like 10-20% of the time even if lyme is present.

[Millerman]

Is the lumbar-puncture test for Lyme highly-reliable?  

[patsy10]

Even if you get tested and it's negative a trial of antibiotics would still be worth a try.  Lyme testing can be very innacurate.

[Manhattan]

Have you done research on the web? I would definitely consider getting tested for Lyme Disease. It does mimic symptoms of ALS and you would not be the first person to be misdiagosed. Do you find that your symptoms improve on antibiotics?