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  • So exhausted..waiting for results..

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    Old 08-25-2008, 09:32 AM   #1
    Skimmy625
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    Unhappy So exhausted..waiting for results..

    I am a 28yo female and I live in RI and about 5 weeks ago I noticed a reddish-purple blotch with a distinct bite mark in the center on the back of left knee/lower thigh. It was about the size of a golf ball, maybe slightly larger, but never had the bullseye appearance. I disregarded it thinking it was a fly or spider bite. It didn't hurt and was really never itchy. This blotch was very noticible for about 3-4 weeks. Then it started to fade a bit, but you can still see it a little and can still see the bite mark in the center.

    So about 10-14 days ago I started having symptoms such as: extreme fatigue, slight achiness, bouts of chills and hot flashes, strange feelings of restlessness in muscles of arms and legs, slight fever, just an overall miserable feeling. So off I went to my primary care doctor last Tuesday because I was getting nervous thinking it might be Lyme disease. I explained all of my symptoms and what the blotch looked like, and showed her the mark you can still see a little, and told me right away that she thought it was Lyme.

    The doctor started me on amoxicillin 500mg 3x a day. I started that last Tuesday night and will be on it for 3 weeks. She said we would do bloodwork to test for it, but that the test can be inconclusive. The following morning I went for a full panel of bloodwork, included the ERISA test and western blot. I am still waiting for those results. Its been almost a week.

    But this past weekend was the worst I have felt through all of this! I was extremely fatigued and weak - to the point of not wanting to move. I am so tired and feel like I could sleep for a million years, but when I try to nap or sleep longer I can't fall asleep. I also am having problems with focus and concentrating and losing my train of thought. Its really strange. Then yesterday I felt so exhausted and dizzy like I could faint at any moment. Such a horrible feeling! I have never felt like this before.

    Just wondering if anyone else started out like me? I am really nervous about the whole thing, especially like what happens after the antibiotics are finished, and what kinds of follow-ups should be done. Also what should be done if the tests are negative. I will obviously finish up the amox. Just really nervous and looking for support.

    Last edited by Skimmy625; 08-25-2008 at 09:33 AM.

     
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    Old 08-26-2008, 04:39 PM   #2
    luckeeluke
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    Re: So exhausted..waiting for results..

    Quote:
    Originally Posted by Skimmy625 View Post
    I started having symptoms such as: extreme fatigue, slight achiness, bouts of chills and hot flashes, strange feelings of restlessness in muscles of arms and legs, slight fever, just an overall miserable feeling.
    That sounds very familiar during the first 1-2 years of my fiasco. For me add in some multiple chemical sensitivity, light sensitivity, daily excruciating headaches, sinus pressure, and fatigue. For me the joint aches really didn't start until about 12 months into not feeling well- I don't know why. The mind problems, dizziness, bumping into walls, brain fog, food sensitivities, constipation slowly got worse over the 3 years. Sometimes off and on, mostly though in a slow steady progression.

    Things like work, driving, and simple thought processes became difficult. Driving was especially interesting. I felt in a daze and and things did not register- which was scary. Like I wasn't connected to anything around me.

    Amoxicillian was the only thing that helped in the begining. I though I was having major sinus infections with lots of complications, so it seems I was way off. If i hadn't have been on Amoxicillian for sinus issues and also Cipro for gut issues early on, I would be in way worse shape right now.

    Good you got tested right away. You might need to get some more tests in a month or two just to be more sure, especially if nothing shows up. Sometimes the bodily response and time is an issue.

    I hope your tests tell you some more information. If you think/find out it is Lyme or similar tick borne disease- read as much as you can. Books, journal articles, etc. Take pictures of any rashes you have and document your symptoms as much as possible. Sounds like you have been keeping track of things very nicely.

    In the mean time look into some herbs and do some research on them. Japanese knotweed and Samento/cat's claw can be helpful to some folks. They might make you feel worse and then better or better right away, all depends. Do research before you decide to take anything.

    Get sleep, eat well- vegtables, meats, fruits, cut out some sugar and try to limit any foods you seem to be reactive to, get a little excercise if you can.

    Just some words. . . take em or leave em. Your tests might tell something. Good luck. I hope you feel better.

    Last edited by luckeeluke; 08-26-2008 at 04:46 PM.

     
    Old 08-26-2008, 04:45 PM   #3
    luckeeluke
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    Re: So exhausted..waiting for results..

    I recommend this book to most folks. I gave it to my parents to read. It's fairly easy to understand and has some good information. It's not too expensive either.

    Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections: Stephen Harrod Buhner

    Up this way in Mass. there has been a lot of stuff in the papers recently about Lyme, showing different sides to the story. Opinions/observations at different ends of the spectrum- medical community, paitents, advocates, etc. Hopefully it will start to spread the word more. At least get people thinking, instead of being "complacent" or uneducated.

     
    Old 08-26-2008, 06:11 PM   #4
    Skimmy625
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    Re: So exhausted..waiting for results..

    I can see you are from Worcester. Not too far from me, I am in Warwick RI. I feel confident that we caught it quickly. I plan on following up with my doctor tomorrow on my blood test results. I haven't heard anything yet and tomorrow will be a week. Today was a pretty good day. The fatigue wasn't as severe as it has been. I find the mornings to be really rough. I still have been going to work everyday, and getting up in the morning has been a struggle and painful because I am usually achy. I have had pretty bad sinus headaches too, but I have prone to them my entire life.

    Thanks for the info and heads up on the reading and research. I have been doing a lot of research online, but i did want to get a book. But thanks for recommending that one. Hopefully I will hear back soon on the bloodwork.

    How are you doing now? How long have you had Lyme?

     
    Old 08-28-2008, 05:43 PM   #5
    luckeeluke
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    Re: So exhausted..waiting for results..

    It can be tough waiting for the test result. I don't put too much weight in my test results at this point. Only had an IGG Band 41 show up and this was on a Quest western blot. I took the test 3 weeks into 3 month period of Tetracycline, before that I had a few negative ELISAs and Lyme screening tests. I'm more of a clinical case at this point. I think I'll try and get another western blot, even if it's just from Quest, I don't have the cash for the IGENEX tests.

    I'm seeing a doc that specializes in Lyme near Cape Cod. He knows his stuff and has diagnosed a lot of people clinicaly by their symptoms. He says testing is hit or miss. I can also tell my reaction to antibiotics and by how my symptoms change or the same ones get worse or whatever.

    All I know is I feel better now (big picture wise) than I have over the last few years. I have spent almost 20 spring, summer, and falls on Cape Cod. My parents now live there and I have also lived there for a few years at one point. I've had two of the really small deer ticks bitten in that I know of over the last 8 or so years, never had a rash. If I had two then I probably had others that I don't even know about. I think I had a few little bumps around the two bites.

    I started not feeling right after I moved and started a new job, stress kicked it offI beleive or something in my environement. I can remember it clearly it started on a Sunday and from then on for about 3 years I haven't felt well. I felt a little odd before that for some time but not anything real noticable then wham.

    Right now I'm doing much better for the time being. I seem to have good weeks and bad weeks, good days/partial days and bad days/partial days. I know my good days are more numerous now which is good. I don't have as much chemical sensitivities, strong sense of smell, headaches, toxic feeling all over etc. but seem to have a lot of leg heel shin thing buzzing, fatigue especially morning, tired achey body, stiff/achy neck, achy jaw, burning eyes, afternoon fatigue lately. It's really strange some days are like I almost feel well again and then other days I feel like I went out hardcore drinking and sort of got hit by a car, the night before. It's just so back and forth and wierd sometimes. Never can predict much of how you are going to feel.

    All I know is I see progress with the anitbiotics. I also see progress with herbs when I use them. Probiotics have been helpful as well. I was reacting pretty hard core to gluten/wheat a while back, so I cut those right out and haven't eaten much of them since.

    I'm 29 right now and went to college in Worcester and have lived in Worcester off and on for few years at a time. I love to fish on the Cape in the marshes and also I have a Jeep and do 4x4/Jeep trails all over New England, so my hobbies aren't neccessarily tick free either

     
    Old 08-29-2008, 08:24 AM   #6
    Skimmy625
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    Re: Results, finally!

    I finally got my test results back today, FINALLY! I had mine done at Quest too. The Lyme IGM/Western Blot were all negative on lines 23,39 & 41. On the Lyme IGG/Western Blot I only tested a positive on line 41. So I guess at this point I just need to finish the antibiotics and see how I feel afterwards.

    Is there anything else i should be looking at on the report?

     
    Old 08-29-2008, 07:34 PM   #7
    luckeeluke
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    Re: Results, finally!

    Wow that sounds very similar to my test. Only the IGG 41 from the quest western blot. Really strange. Your symtoms are/were very similar to most of mine. hmmm

    I know some folks down in the Warwick area. A Jeep club I'm in is based out of the Warwick/RI area. Sometimes I'll go down there for an event of some sort.

    Last edited by luckeeluke; 08-29-2008 at 07:36 PM.

     
    Old 08-30-2008, 09:16 AM   #8
    Skimmy625
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    Re: So exhausted..waiting for results..

    Yeah thats really strange. From my research, I've learned that the positive on line 41 is what would test positive first if you have Lyme. But it can also be linked to many other bacteria. I'm just really confused.

    Yeah Warwick is ok. I have lived in RI my whole life. I am going to a Sox game on Labor Day. I hope I'm still feeling ok enough for it.

    My latest symptoms has been sharp pains in my body that move all around. One minute my shin, then my knees (I have had two previous knee surgeries so that doesn't help), then my ear, then my back. Weird.

    Before all of this I was playing softball. Luckily I was able to finish the season up. But I think I actually may have gotten bit there. We had a double header one hot Sunday, and in between the games we were lying in the grass on our backs under the trees next to the woods. I was wearing shorts (my bite was behind the knee). Stupid now that I think back. Oh well.

     
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