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jeff001 02-25-2007 10:16 AM

possible ALS but it seems not my story
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.

ticker 02-25-2007 03:40 PM

Re: possible ALS but it seems not my story
Hi Jeff. I am glad you have found out what is wrong. So many doctors tell people that Lyme does not exist somewhere when it is in every state. It is the second fastest growing infectious disease in the US after AIDS.

Did you see the post at [COLOR="Navy"][U][url][/url][/U][/COLOR]

What dose of Doxy are you taking? It is very important to see a knowledgeable doctor and be tested for all co-infections. It is estimated that 60% of people who have Lyme are co-infected. As someone who has had several, I know firsthand how important it is to know if they are present. Having them may affect treatment choice and progress.

Are you familiar with the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme take antibiotics, their symptoms get worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this reaction in the beginning or change of treatment and every three to four weeks. Over time, they should lessen in severity.

If you would like a doctor recommendation, let me know. The Lyme board on this site is also great.

jeff001 02-25-2007 06:08 PM

Re: possible ALS but it seems not my story
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.

ticker 02-26-2007 02:22 PM

Re: possible ALS but it seems not my story
Hi Jeff. Often, infectious disease doctors are not the best to see for tick-borne illnesses.

200 mg of Doxy daily is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily. It is very important to get the proper treatment. A few tips about taking Doxy in case you did not know. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Drink a full glass of water when you take it for the same reason.

Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth (which men and women can both get). The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

Tick attachment time seems to be irrelevant. The tick that bit me was attached for three hours at most, and it transmitted five diseases! There are many things you can do to protect yourself from ticks. How do you remove the ticks you find? There are eight different ticks and each can transmit a number of diseases.

The closest Lyme doctor to Arkansas that I know of is Dr. Charles Crist in Springfield, MO or Dr. Joseph Jemsek in Huntersville, NC. I hope you can see someone soon and get the help you need. It is very important to be tested for all the co-infections.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner. It has a wealth of information, including how to protect yourself and your property against ticks.

jeff001 03-03-2007 03:43 PM

Re: possible ALS but it seems not my story
Hi Ticker,
Thank you for your words! I thought I would give this ID doc a shot because 1) I have insurance that will pay him. 2) The Lyme docs are so far away. However I will contact and make an appointment with the long distance docs if it appears this guy is not pushing in logical directions. The antibiotics I am on I realize now after reading the title you sent me is really not sufficient for lyme, I know people talk about the monthly re-occurrence and in this short time of my journal I can see this. The ID doc prior to my visit has sent me a questionnaire in the mail and in this he specifically asks about Tick exposure (I live on a working cattle farm in hill country and ticks are very numerous.) It is not uncommon after a day on the tractor cutting grass to pull off 20 or more ticks. I have seen many different types of ticks, until now I thought that all ticks were the same just that some are fat, some are flat, some are colored etc. This next season I intend to catalogue the different types of ticks we have here. Taking pictures and then identifying the species. I had no idea that ticks were so dangerous. I thought I was being healthy by not using a lot of chemicals and wearing loose fitting clothes. I would pick them off in the evening getting most of them. This was especially easy to miss them on the days I work from sun up and am so tired at night. This will not happen again! This next year things are going to be different.

He also asks about travel and I do a lot of work on travel. Per your reference I passed a copy of the “ADVANCED TOPICS IN LYME DISEASE“ Subtitled “DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES“ by “JOSEPH J. BURRASCANO JR., M.D.“ to the NP that first saw me. I have not had the opportunity to speak with her again to hear her thoughts. The dosing she initially prescribed she told me was based on her experience in this local area. She tells me she has had good results with this dose. She also, if I understood her correctly, felt like here we have more of a problem with the " OTHER TICK BORNE ILLNESSES". She had DX’ed people with Lyme and confirmed thru testing. She also is very aware of the problems with Lyme tests and the need for clinical diagnosis. And yes to confirm you thought she is a real gem. Unfortunately she is not in my health plan but I do not mind writing a check to someone who can fix this. She is also another of my backup plans. I feel so much better now in March compared to January, I now have the energy most days, at least for a while to fight, and Mary seems to really help by fighting for me when I falter.

My wife is not normally an aggressive person. A friend of mine, the secretary at a company I do part time work for gave her a pep talk I am told. The secretary had lost her husband to cancer some years ago and while I did not know her then this experience seemed to give her the skill set to work around the healthcare system. Whatever she told my wife, I don’t know what it was I was not there, seemed to enable Mary to become one of the Lyons. God bless them both.

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