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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.





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