LymeNet Flash: ALS...check for lyme

This is topic ALS...check for lyme in forum Medical Questions at LymeNet Flash.

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Posted by Marnie (Member # 773) on :

Amotrophic lateral sclerosis diagnosis is based on clinical and electrophysiological findings.

Transcranial magnetic stimulation and MRI can show abnormalities which are not specific, but which can confirm upper motor neuron involvement.

The other tests are performed to exclude differential diagnosis. Tests which should be performed in every cases are: medullar MRI, blood counts, erythrocyte sedimentation, serum protein electrophoresis, calcium, phosphore, serological tests for HIV, siphylis,

Lyme disease.

Other tests are made in some clinical circonstances to exclude genetical disease or metabolic disorders (SMN gene, Kennedy gene, Hexosaminidase A, very long chaine fatty acids), haematological or paraneoplasic disorders (anti-neurons antibodies, PSA, CT of chest and abdomen, mammography, bone marrow biopsy) or inclusion myositis (muscle biopsy).

PMID: 17128090

Rev Neurol (Paris). 2006 Jun;162 Spec No 2:4S50-4S56

It is THIS kind of information that needs to get into public "awareness"!

Lyme MIGHT be the cause for ALS symptoms.

Posted by stella marie (Member # 7216) on :

Marnie,

A while back People mag did an article on exactly this situation. A gentleman named Tom Coffey from upper Maryland area was diagnosed w/ ALS and basicly told to make sure he had everything in order cause his days were numbered

I think it was a friend or family member suggested it could be Lyme Disease.

He went to a LLMD in PA and evidently his ALs got got better! Go figure, a freakin' miracle huh?

Yes he tested positive for TBI's.

Stella Marie

Posted by map1131 (Member # 2022) on :

Marnie, thanks. I met a neighbor last night that was telling me about her 32 yr old son having ALS. Of course I started asking questions and sharing some of what I know. I asked her if he had been tested for lyme and she thought he had and all tests came back negative.

This morning I can't seem to get her off my mind, so I did a google search for lyme & ALS and there's lots of info. I'm going to call her and ask her to please tell her research pro-active son to google this possiblity.

All I can do is plant another seed. She was going on and on about the doctors and some of their quack remarks.

Pam

Posted by Travlr1 (Member # 9681) on :

Up for people who think thier is no hope for thier ALS. I'm not saying all cases of ALS are secondary to lyme, but Rocephin sure helped me.

Travlr1 [bonk]

Posted by Troup Brazelton (Member # 6297) on :

The real problem when ALS is suspected is that screening for lyme is seldom done and when done, it is by a lab that may or may not use the proper standard for dx and mistakenly uses CDC survailance, a doctor who can't properly read a blood test for lyme or refuses to believe it is the cause of the symptoms.

The only safe tract is to arm yourself with info, seek out an llmd and not give up.

Posted by Travlr1 (Member # 9681) on :

Amen and up! [Smile]

Travlr1