posted
Hubby been diagnosed with both. Being treated for lyme but worried. Neuro says ALS. LLMD say Lyme. Need a dr. to help decide with both. Can't stand it anymore!!
Posts: 23 | From Pennsylvania | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
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I doubt you are going to find such a doctor. I sent a man with an ALS diagnosis to a local lyme doctor and he tested positive for lyme and coinfections.
The lyme doctor told him that he had lyme but that he could have ALS also. (She treated him for lyme, and he improved. That would not happen if what he had was ALS.)
You see, ALS is a diagnosis of exclusion. That means that once the doctor has excluded all other possible causes for your husband's symptoms, then he can say it must be ALS.
The trouble is, lyme disease is one of the diseases that must be excluded before the person can be said to have ALS. A non-lyme doctor does a lyme test on the patient and sends it to Quest or LabCorp and it comes back negative. The doc then feels that he can exclude lyme disease as a possible cause. But, that is not so. The lyme tests are not reliable--none of them are. They are tests for lyme antibodies rather than for the lyme bacteria itself. If a person's body is fooled by the lyme into not making antibodies (very common because lyme can hide within our own cells), then the person will test negative for lyme. Many other reasons for negative lyme tests also.
I assume you know that lyme disease can present as ALS. That is what leads non-lyme literate doctors to come to the ALS diagnosis. But, there is absolutely no way for them to be sure that a person has ALS. There is no test for it, etc.
So, if a lyme doctor says he has lyme, then it should be treated as a case of lyme disease. It is a very serious case of lyme when it presents as ALS. Therefore, the person with this presentation needs the very best lyme doctor he can possibly get. Very few lyme doctors are capable of handling this type of lyme patient.
If you would like my opinion on who I would recommend for such a case, send me a private message.
The doc is the key. Can't emphasize that enough.
Posts: 9931 | From Maryland | Registered: Dec 2007
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