ALS/Lymes

[caldona]

ALS/Lymes A friend husband was diagnosed with ALS they had him check for Lymes disease here but the test here did not show he had the disease but his son would not accept it so they are working with a doctor in Milwaukee their test shows he does so maybe we should get a second test

 

[BrianD]

Please advise them to be careful. I too explored the Lyme route, and I know from experience that many of the "Lyme literate" doctors will see Lyme everywhere, and want to start treatments with little to no credible evidence. The reliability of some of these alternative testing facilities is highly controversial. Some of these treatments can even be harmful. I agree with the desire to be thorough, but don't turn a hard situation worse. Just be very cautious.

 

[HelenL]

It depends on which test he had done... the ELISA test is notoriously wrong in that it doesn't pick it up, especially in long-term Lyme. Did he take the Western Blot test? That one is more reliable, but you still really need to have all the "bands" checked, not just the ones that CDC considers to be Lyme.

I went on antibiotics for a month, then got tested with the Western Blot... the theory being that IF there were Lyme in my system, it would pick up the "dead" lyme spirochettes (sp?). Didn't find anything... also had a spinal, and didn't find anything either... I got a lot of my info from a book, but honestly, didn't change my diagnosed at all.

Good luck!

 

[Chase_Corin]

the definative test to check for Lymes disease is the "Western Blot test" we had to send to California to get the test and have it administered. Since we live in canada we had to pay for it since it is not covered under our health system and I believe it was around $1000 for the test. However a thousand dollars for piece of mind is reasonable to me.

Unfortunately dad's test turned up negative for Lymes so ALS was the official diagnosis.

If it ends up being Lymes you need to find a real lyme educated Doctor because it is a complicated disease to treat. I wish you luck

 

[kmendsley]

Just be careful...always good to get 2nd opinions on things...but don't start any treatment until you know it is confirmed treatment.

 

[LizT]

May I ask which doctor you plan on seeing in Milwaukee? And youre speaking of Milwaukee WI, correct?
Im just curious, as we live in WI and my PALS neuro is in Milwaukee. He went to have the Lymes test, and his Dr wouldnt even do it. He said it would be a waste of time and money, that it was clearly ALS.

 

[caldona]

This is what she wrote;
My husband got some good news today. He tested positive for Lyme Disease. As you know it mimics ALS. We have been working with a dr. in Milwaukee for the past 3 months and he recommended we have a blood test performed by IGX in California. He called me this morning and told us. This is a terrible disease, if left untreated as my husband has We will go to Milwaukee April 11 and he will check my husband out. We will then start 1 month of antibiotics (3 different ones) and then after a month of oral antibiotics there will be a port put in and he will be give more antibiotics intravenously for another month. This is done at home. It is going to be hard on him, but this it the treatment for Lyme's Disease. It is also very expensive. Our 1st office visit is $1500 and insurance will not pay for it.

 

[trfogey]

Here is the ALSuntangled group's report on Lyme disease and ALS. I hope your friends have plenty of money set aside because there is a reason that their insurance company won't pay for the treatment.

 

[HelenL]

Can't you do the month of oral antibiotics with your PC doctor, and then get retested? I know the theory behind it, and if done through your PC it may be covered by insurance. I went that route, and still tested negative...

 

[notme]

Buyer beware. There are multiple companies being investigated by the FDA for this LYME crap they are selling people on. Do the research. I've posted the link before to the NYT article

 

[caldona]

I don't know but I will ask my friend. I hadn't thought of that.

 

[dianan]

My mom's doctor said that antibiotics do not work if you've had lyme for a long time and the only way to get rid of it is with Cat's Claw, which she has been on for a long time and has not seen a change. She has not been diagnosed with Lymes, but her doctor is convinced she has or at least had it which is what started her ALS. It's all so confusing to us. It seems like every doctor she goes to says something different. Between the neurologists, chiropractors, and osteopathic doctors, I've lost count with how many she's been to.

 

[SpringOwl]

Glad I checked in today. I have many symptoms of ALS. I have lost the use of my left arm and hand. I have foot drop, leg drag, muscle atrophy, muscle weakness, spasticity,.... I can no longer walk unaided. I have had four normal EMG's, normal MRI's, (too many to count). I had four negative ELISA tests and a spinal tap that was negative for LYME but positive for oligoclonal banding.

Oligoclonal bands are rarely seen in ALS patients and most commonly seen in MS patients. Oligoclonal bands can also be found in Lyme patients.

I was diagnosed with possible PLS then possible ALS. After possible ALS it was possible MS. When I did not meet the diagnostic criteria for MS, I was essentially told to stop looking for answers.

I did not stop looking for answers and searched every forum, library, and medical research article I could get my hands on. I begged my reluctant a- hole of a doctor to draw my blood for a western blot and he reluctantly agreed. My test came back a screaming positive.

I am 46 years old and most likely have had Lyme a very long time. I grew up in a highly endemic area for Lyme but never remember a tick bite or a rash.

I have been on antibiotcs for almost a year. I have not made significant improvement but I have made some. I have meet many people with Lyme since diagnosis and many of them did not make progress until after the second or third year of treatment.

The reason Lyme patients have to pay cash for their treatment is because the ILADS guidelines say only a maximum of 28 days of antibiotics are to be given for Lyme. A doctor may lose their license of insurance if they treat patients long term.

If you are reading this and would like rot become more informed about Lyme disease, rent th movie, "Under Our Skin", it explains a lot.

There is also a very informative YouTube video by Lida Mattman about spirochetes being found in ALS and MS patients.

I would never have believed I had lyme disease. This does not mean I will recover from Lyme disease and I may become worse or die from it. I am in bad shape for sure (I am typing this with one finger),but I am glad I pursued the testing.

I had one doctor that could not wait to put MS drugs into me. MS drugs and steroids are very bad for Lyme so again, trust your instincts and leave no stone unturned. This is your life.

 

[jb63]

My work up was by a big time doc here on LI and she did not like the lab(not the protocol) they sent my blood to so it was repeated. One of my NP friends was positive for lymes and refused the spinal tap because, well why was it needed. It did not go over well.

I was Negative last April.

So this Sept I found a deer tick attached to my leg under my afo. I know it was a deer tick because I worked with health dept when an ED nurse manager. It was attached to me for only a few hours, most need to be on you for 72 to cause infection so I was told. I did not get a rash but had a blood red spot for 2 months. My doc did not retest. I do not think she understood me when I told her.

come to think of it, it was 2 months later I developed the clots in every deep vein of my stronger leg (which had the tick on it). I wonder if I should persue.......mmmm I'll run it by the clinic.

 

[SpringOwl]

Long Island is highly endemic for Lyme disease. Find a Lyme Literate Dr. They have many good ones in New York. If you can not find one, I will help you. They will most likely send your blood to IGENEX labs in California. The basic panel is $260.00. ( I think).

Do not see a regular doctor or an infectious disease doctor or a nuerologist, they know NOTHING about Lyme Disease. Run away from them. It took me two years to learn this but now I am in a much better place with my health and piece of mind.