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Hi everyone,
Just an update: (posted on my other thread)
I tested negative at the hospital lab. My doctor and husband fought to have my blood sent to IGenex. We finally drew and sent it Sept 6. It was POSITIVE!!! I cannot believe it. Maybe I can get my life back. I cried for a few minutes when it came back. My doc is not promising that my Lupus and RA will go away, but he thinks that I will "control" it now. Like, not go blind and have to take that IV chemo. I have never gone to a LD doc, still on waiting list. My doc and I have just learned from this website. If it weren't for all of you and your great advice, I would have never been tested, etc.
I am treating with Doxy to start, I am up to 200mg per day (5th day). I am going slow because my stomach is already raw and has bled before. I guess we are trying that for 6 weeks because we don't know what to do after that! I am starting 300mg/day soon. I would think that I would need tested again. Just wanted to update you guys. I guess it was pretty positive too. I will get a copy tomorrow and post the results.
Thanks so much!!!
Leslie
Hi Leslie.

What a relief that must have been to read those words. I saw my LLMD and began treatment before I had a positive test result.

About 3 months after I started seeing her and taking antibiotics, my blood was sent to Igenex and it came back positive, even meeting CDC requirements.

Up until that point, even though I understood that my symptoms matched Lyme, I always questioned whether it really was Lyme. Was it something else? Was it cancer? Was it an undetected tumor? Was it a strange disease that had no name yet?

Then, when the results came back - what a relief to have a label for my illness. I finally had something I could point at and say "YOU did this to me!"

I was able to tell people what I had. I had an explanation. I had a name. I had a culprit.

I also cried - don't worry about your reaction. You went though heck to get to this point and you may still have a big fight ahead of you. Sit back and take a deep breath.

Just FYI ... I was on Doxy, 600mg per day for 11 months. For Lyme, you should be on at least 400 mg per day if you can handle it. Taking my Doxy with food helped me a lot.

Good luck to you and hang in there!
Thanks so much everyone. I am taking in every single word of advice and put it play already. It is so true about the Doxy!
I just got back from my appt with my rheumatologist. He is so happy that we caught this. He cannot believe how behind the CDC is and the whole lab issue. He has been researching LD but says that he needs help. He is not sure about the treatment. He has called IGenex for better lab interpretations, and is waiting for a response. I am on a waiting list for a LD doc in Saginaw, MI and he wants to call him. I think that would be our best bet. He thinks that my RA will not improve, but the Lupus will be controlled. I still have both, but the infectious source for Lupus is the Lyme. If I control the source, I can control the Lupus. (not cure, but I'll take a good quality of life!) So, I got a copy of my labs and have no clue what they mean. I am on heavy steroids too and the local LD Assoc. said that they would be surprised is I would pull a positive while on Prednisone and Kenolog. Surprise!
Well, I am not sure what to do from here but up the Doxy. How do you know when to stop it??? Thanks so much!
Leslie :)
[QUOTE=LMHART]Thanks so much everyone. I am taking in every single word of advice and put it play already. It is so true about the Doxy!
I just got back from my appt with my rheumatologist. He is so happy that we caught this. He cannot believe how behind the CDC is and the whole lab issue. He has been researching LD but says that he needs help. He is not sure about the treatment. He has called IGenex for better lab interpretations, and is waiting for a response. I am on a waiting list for a LD doc in Saginaw, MI and he wants to call him. I think that would be our best bet. He thinks that my RA will not improve, but the Lupus will be controlled. I still have both, but the infectious source for Lupus is the Lyme. If I control the source, I can control the Lupus. (not cure, but I'll take a good quality of life!) So, I got a copy of my labs and have no clue what they mean. I am on heavy steroids too and the local LD Assoc. said that they would be surprised is I would pull a positive while on Prednisone and Kenolog. Surprise!
Well, I am not sure what to do from here but up the Doxy. How do you know when to stop it??? Thanks so much!
Leslie :)[/QUOTE]

Well for a good start, he could read Burrascano's treatment paper on Lymes, dated 2005. Available here:

[url]http://www.lymediseaseassociation.org/drbguide200509.pdf[/url]

A good read. Definitely stop the steroids, as they are very bad for you while you've got Lymes; they suppress the immune system, and that's the last thing you need right now.





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