I need some advice... Help!

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baileygirl76
Regular Member


Date Joined Sep 2008
Total Posts : 123
   Posted 11/4/2008 7:43 PM (GMT -6)   
I was diagnosed with Lyme late July 2008 - Only symptom was a swollen knee - while waiting for WB results I developed tingling all over my body.  I was treated with 100mg Doxy 2x a day for 28 days. Felt better. Never knew I had a tick bite.
In Sept. I found a tick on me. I went to the doc - she gave me one 200mg dose of Doxy.  Five days later started feeling bad again - like an electric current was running through me. I was tired, forgetful and extrememly anxious. Went back to the doc and got 200mg Doxy 2x a day for 30 days. In that time I saw a LLMD. She is not primarily a LLMD and I was actually warned by several people... I still went b/c I wanted to formulate my own opinion. She told me lots of things I read online.  She wanted me to stay on Doxy for 6 -8 more weeks.  I am now on week 7 of Doxy 400mg 2x day.  I feel great. I have had some skin crawling but I am not sure what that is about. I have been exercising.  My skin looked horrible even after all the Doxy and that has cleared up.  My libido has returned - Yay! 
I want to stop the antibiotics (after the full 8 weeks). I can't stand taking them. I know they wipe out everything good. I know they work too... I feel fine on them. No real stomach issues. The sun sensitivity thing SUCKS but I am a saint about suncreen. I take supplements (Multi, Vit C, Omega 3's, Probiotic) daily.
I am due to go back to the LLMD on November 19th. I want to go to see what she has to say. I had another WB done and 1 band was positive.  Previously I had all 3 positive.  At this point 2 are on the IgG are present - she wants to test me again in 2 months. All my blood work came back normal except for the EBV - the IgG's were high. I want that tested again as well since the numbers should go down.
I have not been tested through Igenex. I got the test kit but WOW - expensive!  I can't afford that right now. Does insurance cover any - even out of service?  Just curious.
Just looking for advice. 
Thanks for reading if you made it this far.
 

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 11/4/2008 8:58 PM (GMT -6)   

Hi baileygirl76.  How long do you think you were infected before getting diagnosed?

From what I understand, 200 mg of Doxy daily is not in the treatment range for Lyme nor is one dose of 200 mg.  400 mg of Doxy is in the treatment range.  You have been on the proper dose for seven weeks now.  Since your first month of treatment was not aggressive enough, I don't think it would be good to stop antibiotics yet.  Early infections are the easiest to cure.  Once time has passed, you cannot go back.  It is my understanding that an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic.  It sounds like your infection was longer than that and you did not receive proper treatment initially.

Skin crawling senstations can be a symptom of Lyme disease.  Are Lyme specific bands positive on your Western Blot results?  I highly recommend getting tested through IgeneX after you have had futher treatment.  They use more sensitive testing and list more Lyme specific bands on the Western Blot.  You can submit the bill to your insurance company for reimbursement.  Some pay more than others.  You could call your company and see how much they would cover.  You should also be tested for all the co-infections ticks can transmit.  I know it is not inexpensive, but getting proper testing and treatment as early as possible will save money in the long run.

It sounds like you are responding well to treatment which is good.  I am sure you cannot wait to get off meds, but you need to make sure you have erradicated the infection.  Getting proper treatment early in the infection may reduce the chance of long-term complications.  I highly recommend that you reseach this so you can make the best choice.

 

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 11/4/2008 11:06 PM (GMT -6)   
Hi bailey! Ticker gives great advice! You've been doing well so don't stop too soon! If you hang in there now and finish the race, you will not regret it! It is so much easier to cure a new case than to try and treat an older one. I am happy you are doing well and have a wonderful chance of recovery. Best wishes.
bablymers mom
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