I am Rob. When I became ill, (of something), I began to look for answers to my questions. Why was I feeling like this? Was it because I was at the pet shelter? Could I have been bitten by a tick? Did I have a severe allergic reaction to dogs, or cats, after living fine with them all of my life? Was this a thing called CFS/Fybro? I did a web search and found this wonderful and enlightening website filled with people who were in the same situation as me, (SUFFERING)! I laugh when healthy people tell me they are tired! I began reading the stories, then joined right away, rec'd emails from caring and supportive folks. After the struggles of meeting with Dr.'s, (including my PCP, who did honestly run a bunch of tests for me), I found the best Dr's in the world, (right here on this website)!! I learned about LLMD's, what they do, how they know for sure if it is Lyme, how they can help me. For the first time in my life I had taken action so very vigorously. I wanted to be healthy again. I wanted to stop being in pain, losing sleep, feeling weak and fatigued, having numb and heavy legs, tingling in my body, stiff neck, foggy, many floaters in my eyes, etc. Today, I have seen my LLMD, am taking meds now, (Tetra 1500mg's a day). I am feeling way worse than I did while on Amox 1500 mg's a day. I am working each day and doing most things but desire my energy back. I am sure this is Lyme, even with all the negative results, even from Igenex, and they ran six tests. However they stated I was + on the first run, then after a second run, -. Some bands are + and my LLMD says that there is some evidence on the 18 band that suggests exposure to Lyme germs. Do people test - from Igenex, but later test +, or have lyme symptoms anyway? Is there another desease that is like lyme? I have never had fevers, night sweats, chills at all. My results are posted here as well. Anyway, so much to say as you know. Thank you all who everyday are willing to share your lives with me, and others, to ad some level of support and love for one another.
I hope one day this website is here for solely the purpose of learning, and no one person ever suffers again!
Posted by Michelle M (Member # 7200) on :
Hi Rob.
Remember that even people with positive bands all over the place (six positive bands here, plus five IND's!) continue to question the he11 out of their diagnosis because Lyme is just so strange, so ethereal, and so freaking weird!!! And it takes so long to get better! And it's easy to lose faith, and imagine that you must really have something else...hopefully, something you can get better from a lot quicker!!!
Remember too that there's a study in which a whole group of people with EM rashes had culture-proven Lyme -- with Borrelia burgdorferi bacteria cultured directly outta the rash. And of those people, a shocking number continued to test totally negative in their blood. Proving that a large percentage of people with Lyme will NEVER TEST POSITIVE, no matter what. So people really must stop fixating on the tests. Believe me, when even the CDC admits the tests aren't good, you KNOW they aren't. You can be crawling with Lyme and test pure as snow. Tests are great for insurance purposes. But negative tests mean very little in real life.
Now, we hope you keep getting better. This Board is great. Have faith in your doctor and follow his advice - I'm betting you'll see much improvement over the coming months!
Michelle
Posted by Lymetoo (Member # 743) on :
I think Michelle is right. Everyone here has questioned their disease at one point or another. It just seems crazy to feel worse while getting "better!"
Hang in there and don't worry so much about the tests. Progress is what counts. When you begin to see progress, you'll know you're on the right track!
Posted by bettyg (Member # 6147) on :
Rob,
Yes, the board & people are great about sharing their experiences and knowledge with us all.
I agree with the other comments made below yours.
Rob, please do us "chronic" lymies a favor, and EDIT your paragraphs to 6-8 lines of text and double space between paragraphs. We then can read & comprehend so we can try to help you/others.
Posted by BostonLyme2005 (Member # 7680) on :
Ok....Will keep that in mind to help everyone...Sorry!
Posted by groovy2 (Member # 6304) on :
Hi Rob
In my openion tests are worthless-- To many things can sque results--
I had perfect bullseye bruse weeks before I got sick--
I have been very sick ever scence--
My tests (Igenx) came back IND--
When anthrax letters happened a few years ago government tested those exposed using WB tests--
Government gave Everyone exposed ABX--
This should tell you something-- It did me--
Save yourself heartache and worry over test results--Jay--
Posted by BostonLyme2005 (Member # 7680) on :
Yes, tests can be worthless. So may Doctors rely on out dated info from the CDC. I guess they may be coming out of the woods though re; lyme.
Posted by Bill ATL (Member # 7817) on :
Howdy Rob!
Like others have said...Trust in yourself first and foremost! If you are feeling better on ABX, keep it up! Work with your llmd as a partner in this struggle.
I can't tell you how many times I've thought this was something other than Lyme. Almost weekly it seems. I have all 3 CDC Lyme bands positive and a few others as well...and I still question it I think it's natural and healthy to think that way though.
As Michelle said...it is just a very wierd issue! (I don't like calling it a disease personally...to me it's more like an infection...Disease sounds terminal...and I will not accept that!).
Get this...I have never missed a day of work because of the Lyme. I haven't had the night sweats or exhaustion that you/most others have...THAT's why I keep questioning it. I do have regular headaches, Heel/Sole pain, facial vibrations, spinal pain, and so on.
All of us seem to have a different combo of symptoms. It may have to do with the strain of bug as well. I'm in the south, and have seen where others here don't have the dabilitating symptoms, but have also heard that our strains tend to take longer to get rid of.
Like you said...this forum is here for all of us...and like you, I am so grateful for it!
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I think it's natural and healthy to think that way though.