posted
Yes, she has been diagnosed with ALS.
Posts: 4 | From New York | Registered: Mar 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A doctor who specializes in lyme disease would say that your mom definitely has lyme based on these results.
Both bands 18 and 23 are specific for lyme. You can't get a positive on these bands unless you have lyme.
Doctors who do not specialize in lyme think that they should required the CDC surveillance criteria before diagnosing lyme. That is incorrect. Surveillance criteria tell the doctor when his is required to report the case to the CDC. They are NOT diagnostic criteria at all.
Your mom hopefully does not have ALS at all! Take a look at the typical lyme symptoms listed on pages 9-10 in the Burrascano Lyme Treatment Guidelines (see link below). You should see your mom's symptoms listed there.
From Burrascano, page 7:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic."
And, here, a lyme specialist, Dr. C. gives the bands he requires to suspect lyme:
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM.. "
My husband's coworker was diagnosed with ALS. I sent him to a lyme doctor to find out if it was lyme. Sure enough, he had lyme disease (based on Western Blot results).
When he got good lyme treatment, his "ALS symptoms" reversed. If the ALS symptoms reverse, that is the proof that it is NOT ALS as ALS never reverses. Never.
Unfortunately, the fellow was an alcoholic and drank beer all day long every day. If the patient does that, then no lyme treatment will work. The patient must not drink alcohol or smoke as both of these will weaken your immune system.
So, although he got his voice back, got his ability to walk back, got his ability to grip and open a jar back, etc., he ultimately wound up in a wheel chair and finally died. It took much longer than ALS for all this to happen, but I am telling you this so that this very important rule regarding alcohol is taken seriously by your mom.
Some top lyme doctors will not even accept a lyme patient if they smoke. So, that tells you how important it is to not smoke also.
The so-called ALS presentation of lyme disease is a serious case of lyme disease. Not just any lyme doctor will do when lyme presents as ALS. This presentation requires a lyme doc with a LOT of expertise.
Fortunately, a top lyme doctor in Washington, D.C. is now accepting new patients after 3 years of not accepting new people. If I were you, I would get your mom to this doctor. You only have to appear in person once every 6 months. You can do telephone appointments monthly, and email for any problems that arise.
Please let me know if you want this doctor's name and contact info. You could come to D.C. on the train if you like. Faster and easier than driving.
I am so glad you found LymeNet and asked your question here. We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - thank you for your helpful response. My mom has actually recently started treatment for Lyme Disease and we will be going to a NEW lyme doctor next week. She is in extremely rough shape. She is completely unable to care for herself, currently in a nursing home. She has no use of her legs and arms and she is using a bipap machine to help her breathe as she cannot do so without it.
I'm hoping it is not too late to treat her and get her into recovery from this. She was started antibiotics (malarone & doxy) and has only gotten worse. Our current LLMD does not offer any help with the detoxing portion of Lyme disease.
Posts: 4 | From New York | Registered: Mar 2017
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posted
I have read that ALS requires IV antibiotics. I don't know if that still is true, but a few years ago, that was the first line with Lyme that was that severe.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Six-I think you are right. I have also read that multiple times. I also know detoxing is a huge part of it, which we need help with. The new LLMD we are going to offers help with that as well as antibiotics.
Posts: 4 | From New York | Registered: Mar 2017
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Sorry to hear the serious condition your mom is in. I will say a prayer for her.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
quote:Originally posted by sixgoofykids: I have read that ALS requires IV antibiotics. I don't know if that still is true, but a few years ago, that was the first line with Lyme that was that severe.
Hi kari93 i agree rocephin might be the biggest help,it may be hard as she is not mobile but intramuscular shots of bicillan may be a option ?!
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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I hope she feels better with treatment.![[group hug]](graemlins/grouphug.gif)
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