Misdiagnosing ALS

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davikingdawn

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I want to caution people that Lyme disease can mimic ALS. I was misdiagnosed with ALS and am finding hundreds of others that were, that was really Lyme disease. The symptoms that set it apart from ALS are as follows: Night sweats, ringing in ears, horrible unrelenting joint and muscle pain, loss of hair. Blood tests for Lyme are notoriously unreliable. If you are having these symtoms, THEY ARE NOT SYMTOMS OF ALS! Carefully outline your symptoms for your doctor and seek a different doctor if that one ignores you.
 

beverly rees

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My husband was diagnosed with als in oct. 2008. He was tested for lyme disease at that time by Stanford and the test results were negative. Since we live in the country and have been bitten by ticks numerous times, we decided to go to a doctor that specializes in lyme to be retested. He tested positive at this facility so we started bicillin shots once a week and now doing twice a week.

His doctors at UCSF and Stanford think that the lab they use to test for lyme is a scam as they say everyone that goes there ends up testing positive and when they do their tests they come out negative.

Since there is no treatment for als, we are going to continue with the bicillin shots for at least 6months to hope that there is some improvement. My conceern is that hopefully we are not doing any harm with the antibiiotics if it is als and not lyme.

The disease started in his hands and arms and is significantly worse over the last 2 years. It has now gone to his legs and so far the medication does not seem to have helped. He does not have alot of the classic lyme symptoms of achy joints and extreme fatigue that other people have reported.

Of course when I ask the lyme doctor if we could be treating both he said that he tested positive for lyme and does not think that he has als and if we ask the other physicians they say he is als and not lyme. Anyhow, would be interested in hearing more about your experince. Thanks, Bev
 

CAHPAH

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My wife went to a doctor that specializes in tick born bacterial infections. They ran a western for antibodies to various infections and she came back CDC negative. The doctor was sure he could still help and, feeling like we had not other option, she went ahead and completed three rounds of differant antibiotics with no effect at all. Her symtoms continues to progress so she opted to stop treatment.
 

beverly rees

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Thanks for the input Jim. I am hoping for different results but so far no positive results.
 

davikingdawn

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Thanks for the responses and I wish all of you the best outcome. I was bitten by a tick back in May and in June started having neurological symptoms, mostly with my speech, as I mentioned before, eventually the horrible joint pain started up, the hair loss, the loud ringing in my ears, the night sweats. These are the symptoms that have nothing to do with ALS. I saw a total of 12 doctors before someone decided to treat me for Lyme disease and he tested me twice and it came back negative twice,but he was forward thinking enough to start me on the antibiotics anyway. I have been on antibiotics for three weeks now and I am 90% back to normal. The only deficit I have now , is my speech is still a slight problem and I get tired easily. My doctor is planning three more weeks of the oral antibiotic and will see if that knocks it out of my nervous system and my speech clears. If I was not having progress, my MD would not be doing this. I THANK GOD above , that this has worked for me. Getting a diagnosis of ALS is devastating. Have any of you looked into stem cell treatment for ALS? I managed to get on the trial list for California starting next year, that is before I realized I have Lyme disease. Best wshes to all!
 

Polar

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I don't recall getting tested for lyme.
However I have read a lot about it..
You would think that would be part of the first thing they would look for being that it's just a blood test..
Also can't recall a heavy metal test which can also produce similar symptoms to ALS..
 

NotALS!

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I have an early diagnosed of ALS and a clinical diagnosed of lyme. I've been on ceftriaxone for 6 months and have improved greatly but my atrophy still seems to be spreading. Its very slow.

Can they cure lyme and still not stop the atrophy?
 

davikingdawn

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I had to be tested three times, before the lyme was found, it is very tricky to find. They finally found it on the Western Blot test. Make sure you find yourself a lyme literate doctor and ask for the Western Blot. I know that recovery depends on how quickly the lyme is found. I have read that 20% of lyme patients that go for a year without treatment, end up never recovering and die a death very similar to ALS. You need to understand lyme is a very "political " disease. Many doctors and ALL insurance companies would much rather make you an "ALS" patient than a "Lyme " patient , it is due to the financial drain of treatment for lyme, and no treatment ( no cost ) for ALS. I am on IV antibiotics now ( Rocephin) and making tremendous recovery. But, I have to pay for it out of pocket as the Blue Cross policy I have will not pay for it....it is costing me $3,000.00 a month for the IV antibiotics. If a person cannot afford this, I guess they just die....I think that is what the insurance companies hope for. Best wishes to all of you!
 

beverly rees

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Hi David,
Unfortuantely, if my husband is correctly diagnosed with lyme it has probably been in his system a few years. He has progressed to total atrophy in arms and hands and now is progressing to his legs. The lyme disease doctor has said that he has seen patient's as advanced as david and the results vary. However, one patient was actually worse and after four years of treatment made a full recovery. Anyhow, we really have no other choice than to stay the course for now and hope that after 6 months of treatment we will find some postiive results.
 

SueG

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Hi - Has anyone here had Lyme disease without standard Lyme symptoms that was diagnosed as ALS and then turned out to be Lyme? I have tried to make my ALS diagnosis into Lyme, have had two negative tests including Western Blot, and have not had rash, fever, flu-like symptoms, or achy joints, or any pain for that matter. All of that says "ALS not Lyme", but of course I would rather have it be treatable Lyme. If I had some indication it was Lyme, I would go for the antibiotics (if I could find a way to afford them)-- but with no clinical symptoms, my primary Dr is not enthusiastic. Yet an acquaintance whose wife died of ALS (or maybe Lyme or maybe both) said regardless, if he were me he'd go on antibiotics right away. But in some cases the antibiotics have accelerated ALS progress, so it's not a no-risk question. This is so hard to sort out!
 

Polar

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My understanding is that treatment for Lyme disease involves massive antibiotic treatment which will probably render you Immune to future treatment with antibiotics .. That being said.. A simple cold could kill you... Let the doctors decide..
Personally I would never load up on any drug including antibiotics if there was not a proven reason and at the same time a proven result of a benefit for the use of said drug..
Pharma is too much entrenched in our lives these days... SHOW ME THE PROOF!
 

davikingdawn

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I am the proof! Speech is back, feeling great, still have two more weeks of IV antibiotics and then Dr will re eval, I know the reason this has worked so well, I did not let it go too long, I have heard over and over and over again, progress and healing is directly related to when , how long before treatment was started.
 

beverly rees

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I ams so happy to hear your good news. I certainly hope my husband can look forward to some good results also. However, if his diagnosis is truly lyme, he has had it for a few years and alot of damage has already been done. His arms and hands are almost totally gone and has now progressed to his legs. The only symptoms that he has similar to yours is the ringing in the ears. Other than that, his is most weakness and atrophy with no joint pain which makes me skeptical that it is lyme. The lyme disease specialist believes he tested positive for lyme and that some people can actually reverse all symptoms after being on the antibiotics for a long period of time, and others get some reversal and others just do not progress. The als clinic believes that he is definitely als and does not believe the lab that was used for testing was accurate. They believe that everyone tested will come out positive.

If you have any additional information that we might investigate, I would appreciate hearing it. Thanks for your help and so glad you can look forward to a full recovery. Bev
 

NotALS!

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I'm still on IV ceftriaxone (generic rocephin), its been 8 months now. My Dr has added azithromax (for bartonella) and recently mepron (for babesia). There are a whole bunch of other diseases besides lyme that are transferred through insect bites. My Dr doesn't believe in any tests. He says they are too unreliable. He is trying different drugs to see which ones work.

At first the azithromax seemed to accelerate the muscle atrophy in my chest but now it has stablized. That's the tricky part with ALS lyme patients, too much of a drug can make the nerve cells die quicker. My ALS is very slow moving so I hope I have the time to beat it.

I'm going to the ALS/Lyme clinic in CO (started by the famous Dr M) in a few weeks for a second opinion of my treatment plan. I want to cover all my bases while I have a chance. I only have atrophy in my shoulders and neck right now but it is slowly progressing, even with lyme treatment.

I was infected by a horsefly bite in Maine about 5 years ago and have been sick ever since with all the classic symptoms of lyme. I'm so glad to see someone with an ALS diagnosed is doing well on lyme meds, it gives me hope!
 

NotALS!

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An important note about vector bourne diseases, they can be sexually transmitted. The lyme spirochete is a close cousin to syphillis and is suspected to transfer between partners.

We are all exposed to bug bites and infections our whole lives. I think genetics determine which infections trigger ALS or any autoimmune disease as a result. My husband has had chronic fatigue syndrome for years so I have been exposed to whatever he has in addition to the numerous insect bites I've encountered throughout my life.

I"m still taking ceftriaxone although my white blood cell count is sinking. I tried adding other antibiotics but developed C.Difficile so now I need to take care of that. It is a long road either way, if you treat Lyme or not.
 
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