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Post by tofumama on Sept 2, 2008 11:34:18 GMT -8
That's me. tofumama....mama to 3 kids and struggling with Lyme.
Spent my late teens and most of my 20's in the woods of So. MA and So RI. As a trail runner. Ran, hiked and otherwise spent my time in the woods for hours a day. Never bothered to check for tics. Never found one, never saw a rash. Diagnosed by a Dr. through the process of elimination (and the CD57 panel) last January with Lyme. He put me on doxy and then took me off after a month due to a severe reaction...and then pretty much dropped the ball. He is supposed to be THE Lyme doc in these parts. Anyways, I was doing the natural route, and felt much better by mid-summer so I figured I had cured myself. Yeah...no.
Here I am a year later and I can barely stay awake, have headaches that nothing touches, no appetite, aches, pains....you know. I am waiting on some lab results from a different Dr. who has NO clue about Lyme BUT told me she would do whatever I wanted which works for me. I am waiting to see what my cd57 level is...it was 21 when I was diagnosed.
To say I am depressed is an understatement.
I really do NOT want to go on abx again. It goes against everything I believe in. I am doing another round of natural treatment, but am having doubts. Is anyone here using natural treatment and no abx with success? I will look around.
Well, that's my brief intro...its all I can give right now. Thanks.
Peace to you.
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Post by LymeEnigma on Sept 2, 2008 12:02:08 GMT -8
Welcome to our humble boards, Tofumama!
Sadly, I think your story is all too common. Did you ever have tests run to rule out co-infections? Unfortunately, the CD-57 test is likely just as reliable as all of the other tests for Lyme; I've talked to people who had serious, chronic illness and had high counts, while others who felt they were in remission had low numbers.
You are fortunate to have a doctor who is willing to do whatever possible to help you. There are not enough of those out there ... at least who take insurance. If you haven't, already, and if you have the means, ask your doctor to run a few more tests. Lyme can cause all sorts of symptoms, but if you are having appetite issues there could be more going on. There are a number of articles here on co-infections, under the Scientific Studies section; it might be worth your while to read through some of those and see if anything catches your attention.
Again, welcome!
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Post by enochroot on Sept 2, 2008 15:35:05 GMT -8
I can't get my immunologist to do a CD57 test!
sorry to hear you are in this fix, my best wishes to you.
You can try the Amazon Rainforest stuff - Samento, Cumanda, Banderol
I have, with mixed effect but then I am not sure Lyme is my problem
(LONG story all over this board!)
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Post by tofumama on Sept 3, 2008 4:13:28 GMT -8
Thanks for the welcomes.
Yes, I am fortunate with my Dr. so far...I actually GAVE her the lab code for the CD57 test and told her what lab to call, etc. She did it no problem. LE, you mentioned other tests, what should I be looking at for tests? Is there a section on here I would find them? I have an app. with her next week and I can ask her to do them then.
Thank you.
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Post by enochroot on Sept 3, 2008 13:54:46 GMT -8
Most believe in the IGENEX Labs Lyme panels
you have to order a kit for testing from them
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Post by LymeEnigma on Sept 4, 2008 10:41:01 GMT -8
Read through the Lyme discussion and support boards, as well as the scientific studies; there are numerous co-infections, as well as Lyme-like illnesses, that all chronic Lyme patients should be aware of. Many of the Lyme-like illnesses appear to be even rarer than chronic Lyme, but depending on the region, they should definitely be considered; some of them can be much harder to diagnose and treat than Lyme.
For the record, I lump them all together; they're all a part of what I deem to be the "Lyme disease complex." Whether you have chronic Lyme, babesiosis, or brucellosis, etc., we're still all in this together ... and we're all still searching for the same complicated answers.
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Post by cobweb2 on Sept 4, 2008 14:39:19 GMT -8
Hey- Welcome to you ! Just wanted to let you know that my LLMD no longer runs the CD57 test-she used to about 4 years ago-but has since learned that it is really unreliable as predictor of illness in Lyme Patients.
Unless you have extra coin to spare I'd say don't worry about it.
She had really sick patients with High CD57 numbers and really healthy patients with low CD57 numbers. So don't put much credence in the results.
There's depression-and then there's depression-but just remember-it is illness speaking-not your soul. It helps to just admit it,too, instead of fighting it.
I think a lot of Lymies have been depressed to the point of suicidal-but those horrible black moments pass. It is possible to recover moments of joy.
I was just determined not to leave this world feeling crappy-and of course, when I was happy I didn't want to.
If your name is linked to your diet- you may want to investigate the effects of Soy and the Lyme Patient.
My lymie daughter has leaky gut- and soy is an absolute no no for her-me, too. We avoid the stuff like the plague. Rice is Nice. ;D
Depression really really sucks. When my mood would slip, it was always like DAMM, here I am again.
I can only post when I get to the library-but I will be thinking of you, and praying for you.
Wanted to add that my course of treatment started with mega doses of Ceftin. Then I moved to IV rocephin, but it wasn't until I treated Bartonella with Rifampin that I reconnected with my brain.
Look at Dr. Burrascano's protocal- or have your Dr. look it over.
I had positive Lyme tests everywhichway- but my CD57 (back when my LLMD was still using them as some kind of indicator) was 61-not too bad-but I was really sick.
My daughter's CD57 was even lower- but she didn't feel as sick as I did-she still managed to go to school-whereas i was on disability.
Good luck to you
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