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Amyotrophic Lateral Sclerosis (ALS) Message Board


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To condense my symptoms I had (note: past tence however I still have slight symptoms but greatly reduced) muscle pain and muscle weakness. Shaky feeling in my arms and legs. Muscle twitching. Sore throat. Each and every day that went by I became more weak or had more muscle pain until I had to give up my daily walks. I ended up in bed most of the time for about three weeks. Low grade fever from time to time but most of the time no fever at all. After time I developed a sore throat and difficulty swallowing food especially crumbly foods. At times my neck and spine felt funny and I developed a ringing in my ears (still have that). When I walk outside in the cold my muscles would hurt (a lot) as I warmed them they would feel better. At times my chest and back would hurt but not constantly. At times I developed a shiver and would shake. Any strenuous activity resulted in pain and shakiness in my muscles. That is until the end of January when I went to see a nurse practitioner who prescribed Doxycycline, a broad spectrum antibiotic. This seems to have helped. I have lost a lot of muscle because of my down time. I am still hyper sensitive to touch in my legs (according to my neurologist) and I have a difficult time determining weather a metal plate is hot or cold that is touched to my legs (this seems to have occurred during recovery). My symptoms starting improving about the third or fourth day of the doxy treatment. After two weeks I ended my antibiotic treatment and I slowly started getting my symptoms back so my neurologist started me once again on Doxycycline this time for an 8 week run while waiting for an infectious disease specialist. He has also been consulting with an infectious disease specialist. I have an appointment to see the infectious disease specialist, but the appointment wait time is very long here so we began a logical treatment now.

This stared slowly in December but I did not seek medical help until the second of January. In November I had the Flu but thought nothing more about it after my week in bed.

Most of my blood work was normal, liver slightly elevated, no heavy metals, cat scan of abdomen were normal. I am exposed to a lot of ticks but the standard Lyme titer was negative however STARI was not tested for. I also spent time in Hawaii and in November had a horrible bout with the FLU.

My first doctor thought I had the beginnings of MS or ALS but wanted to rule out cardiovascular disease first. He ruled out Lyme because “we do not have that here” (this was very wrong and there are 'Lyme like' things such as STARI for one). And scheduled me for a battery of cardiovascular tests and then 6 weeks later a Neurologist. Doxycycline is the cure for most of these and the pills are cheap. In fact cheaper than the test. Most Lyme cases in the US are not reported because of politics. Search for Lyme disease on the net to learn more. An antibiotic will not hurt most healthy people and can prevent permanent damage if it is Lyme Like disease. I am not a doctor and I am not totally cured yet but am about 85% back. I now go to the fitness center every day (per doctors orders) to rebuild muscle lost (I was very active before this struck me and now barely walk a mile and a half without pain but getting better). I kept a daily journal of my symptoms and have all lab work. If you are a doctor or a nurse and would like a copy of my symptom journal, lab tests and time line I will consider sending copies to a verified health care facility address after I have a privacy statement signed and perhaps a limited non-disclosure agreement. (I want to protect my identity from the general public other than that feel free.) Knowing what I know now if I were suffering from unexplained muscle weakness, soreness, stiffness, and shakiness for more than a week I might insist on a course of Doxycycline or at least a consult with an experienced Infectious Disease Specialist. So far it seems to have worked for me. Note again I am not a doctor and this is not advice this is just my story and again I am not out of the woods but I am a lot better.
Thanks Ticker,

It has been a roller coaster ride. When I first started the Doxy 100mg twice a day things got better for a week then started back but then got better. I missed all doses for 3 days then starting the second round things according to my journal my muscles all hurt worse but in a couple of days seemed better.

I still have not seen an ID (Infectious Disease) doctor but should in a couple of weeks. Appointments are hard to get as he is very busy.

The Doxy was started as more of an experiment than anything by a NP who reasoned we had nothing to lose, and she has seen several Lyme Like diseases in our area that Doxy seemed to fix. (I am otherwise very healthy and active mid 40's person. My throat has been sore and swallowing has been wierd through it all.

Thanks for the link, and no I did not see this link. I now see several things on this page that leap out at me. And I do not mean a casual relationship. Thank you very much. I live in northern Arkansas any referials ...

The neurologist has not ruled out a post viral syndrom either, it is just that with response from the Doxy he thought persuing this course was wise in view of the long waite for the ID person.

Thanks Again for the references I will now go and do some reading.

The other input to this is I was in an area for several weeks that had warnings of leptospirosa because of unusualy large rainfall. I have wondered if the flu I had was that.

In my work I travel and do field work. At home I own a cattle farm and ticks are a big part of my life. Most of the time I get them off in a few hours but there have been times this last year that the little buggers were on me for days, I will be more carefull in future. I have pulled off mostly lone star ticks (that is the tick with a lone star on their backs) but also the more 'fat' deer ticks and some I dont know what they are. This next year I intent to study them more closley and try and identify them. I live in a very rural area.





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