I have been in treatment for 13 months, no real improvement and, after 8 weeks of IV doxy I am WORSE, by far! Now...can no longer drive, work, take care of my kids, etc. I have plummetted on the IV doxy...brain is total crap now! Not a herx...I have never herxed on anything, I don't think.
Thoughts anyone?
As always...MANY thanks!
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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momindeep
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Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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bcb1200
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Wow..so sorry to hear. How do you know it isn't a herx? Doxy has excellent BBB penetration. You say you have never herxed on anything. Maybe this is finally it?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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bcb - No, I don't think that it is a herx, because I just got slowly, but progressively, worse on the doxy over an eight week period...no improvement or flairs or anything, just a steady decline.
micul - Yes, I treated babesia for about 2 months with mepron. And...I don't have the classic babs symptoms either...night sweats, etc.
Anyone have any ideas for me? I am ALL neuro...all in my brain...'can't function...progressively declining. 'Am in the process of looking for yet a third LLMD...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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momlyme
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My son was the same way on abx... slow progressive decline.
I took him off all abx and started treating him with the HPU protocol & A.C. method of oral chelation for mercury and Bar-1 for Bartonella.
He has been doing that protocol since the day after Christmas.
Still not seeing a lot of improvement.
My daughter started to get nosebleeds.
My brain was malfunctioning, I have developed a severe case of dislexia.
My husband was having heart problems, but nothing showed on EKG or stress test.
I found out that our home is filled with toxic mold. We were all being poisoned with mycotoxins.
Mold and metals were our reason for not getting well... now we are out of the house and getting better every day we stay away!
Still a long road ahead of us... but finding the source of the toxic exposure is step 1 to recovery!
I hope you find yours.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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No one else is sick in my house/family...just me! I just don't know why I am a non-responder! I was the poster child for health before all hell broke loose two years ago! Sucks!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Hoosiers51
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I got a lot worse on IV Doxy too. It was like pumping poison into my veins everyday....it was making me slowly sicker. I did it for 3 months, then we just had to stop because it was only getting worse.
I seemed to get moderately worse on oral doxy, which I took first, but that was NOTHING compared to IV Doxy. And it didn't seem like a herx either. In retrospect, I don't know if it was truly a herx (immune response), or just a lot of kill off that I couldn't detox fast enough, with the addition of having to detox the med itself, etc.
In the book "Top 10 Lyme Disease Treatments", Dr. H in CA says that some patients are simply too sick/infected for Doxy, and that they will only get worse if you give it to them before they are ready. When I read that, after the fact, it was a real eye-opener. I can't remember if he was saying they had too much Lyme, or just too many tick infections in general.
In retrospect though, I really don't know the cause, only that I got so much worse on the IV Doxy.
I did a lot better with IM Bicillin, which happened much later. I did get what seemed like a clear herxing experience on that med, and after about 3 months, was able to see some slow improvements. I was also on Low Dose Naltrexone, which I think helped me respond better to meds and helped my body in general.
IV Rocephin wasn't quite as bad as the IV Doxy, but that was started right after the IV Doxy, so in general I was just too sick/weak for all of the IV stuff.
So I finally settled on Bicillin later on as a compromise. Because I was basically not willing to go through IV again.
Hope some of that helps. I was also like you....extremely healthy until one day I was very sick suddenly. I was actually in eastern PA a couple weeks before I got sick, so maybe we got infected with the same tick-illness-cocktail. Because this is all sounding very familiar. And I had a ton of bands, like you. All of those bands are yes's except possibly 45.
Anyways, the only real solution for me was stopping the Doxy. I seemed to do okay with oral Minocycline though.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tammy N.
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Tri - I was going to post similarly to momlyme. Please consider looking into mold. The others in your house may not have the genetic issue in processing the mold toxins, but you may have it. To start, check out the survivingmold.com site. Clinic on Diagnosis (will only take 5 minutes to read). Also, check out some of the recent mold thread here on Lymenet.
I have overlooked mold illness all these years, saying 'that's not me'. Now, as I'm reading the book, I think this may be THE underlying issue for me. Doing bloodtests now; awaiting results.
I don't know you well, but I think of you and feel sorry for all you are going through. It's so tough....I know. I hope you find your answers.
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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I seemed to do okay with oral Minocycline though.
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