relapse - trying abx again

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nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 9/10/2009 5:18 AM (GMT -6)   
I was doing pretty well on herbs since March when Levaquin gave me tendonitis and then everything I tried to take had bad side effects.  I was so dizzy from the drugs I could not walk.  So I started the HH capsules and increased the dose up to 16 a day.  I was so mentally out of it sometimes I forgot to take it.  I forgot to reorder and was out of it for 5 days during which time I took Cumanda.  Anyway I don't know if it is my fault or just the BLO being so powerful, but I began to get symptoms again about 3 weeks ago.  I contacted Zhang about the new HH-2 capsules and he said it might be a herx - wait and see for 1-2 weeks. I was taking ten of those  a day which is the equivilent of 20 of the regular HH capsuels.   It is getting worse, not better.  I have headaches every night, night hot flashes, insomnia and burning in my shins - and have to get up to go to the bathroom every two hours.
So at 4 o'clock this morning I got up, went through the cupboards and found the old prescription of Rifampin.  Took 300 mg, half the dose, and am now waiting to see what happens.
This is depressing.  Right now I believe this disease is incurable and I will never be well.  I was so hopeful but now I am falling into despair again.  Thanks for being there.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 9/10/2009 6:56 AM (GMT -6)   
Nefferdum,

First let me say how sorry I am that you have back slided. As you know I was struggling with BLO in the spring, doing HH cpasules with Rifampicin and doxy.

I was having emotional symptoms (emotional lability) and brain fog as well- not sure if this is happening with you.

I ended up on a PICC line (something that I thought I would never do) and have made very good progress with IV Claforan- which is very good for BLO.

I have been doing this since end of May. I do IV's M-F and Azithromycin on the weekdays with flagyl on the weekends to cover Lyme forms (Omnicef/probenecid on IV off days). In addition I do Bibillin injections once each week which initially gave me significant BLO herx- now less so.

I have mostly normal days now. I still have some Lyme symptoms (joint pain primarily at night).

My LLMD has let me know that I will come off IV when the CD57 recovers.

After IV I will go back on Rifampin with Doxy or Biaxin or Minocycline to maintain BLO cover. Then eventually I will go back on Zhang/Cowden herbs....
Grew up with Lyme? TB aged 12 so did 2 yrs antibiotics as a kid. Weak immune system lifelong until self diagnosed Lyme 2003. Treated successfully with Cowden herbs until rebit 2007. Babs, Bart and Lyme treatments- currently using IV Claforan, IM Bicillin, oral Azithromycin, and pulsed Flagy, with herbs, acpuncture, homeopathics and amalgam removal.


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 9/10/2009 7:08 AM (GMT -6)   
nefferdun - I feel yout pain! I too am getting convinced that there is no "cure".
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 9/10/2009 8:58 AM (GMT -6)   
I hope I don't have to go the line route to get over this. I don't think I could do it if I wanted to because there are no LLMD's for 500 miles except for a new homeopathic one about 200 miles away (which is my next hope if I can't get this under control).

Thanks you for sharing what is working for you pcpc. Would you please explain your BLO herx. I am confused by symptoms versus herx and often wait months thinking I am herxing when I am actually back sliding. The BLO gives me a very strange feeling I cannot describe. It is in my nerves I guess. I imagine it is like my body is going to have a seizure although that is not the case.

jelainep, I have been lucky to get rid of most of the really bad symptoms but I am nervous about what is remaining and how it comes back over and over. I don't even realize that I am getting worse or what is happening because it becomes normal after awhile and I just ignore it. It just sneaks up on me and I believe I am doing it to myself, just not appreciating life, being negative. It is not as bad as it was in Feb, not nearly but I am worried about becoming senile. I took an online IQ test and my IQ has dropped nearly 20 points. I just can't remember or figure things out - I am not clear. Yet this is my new normal so I forget what I was like before and believe I am recovering. It is scary.

Still there are things I do to help my state of mind. I paint a lot. Every new piece of paper is as blank as my mind and I have no idea how to make it work. I just have to have faith that I can reach something beyond what I understand. Sometimes it happens for which I am grateful. I guess I have to use the same faith to keep trying for the cure.

jojeanle
Regular Member


Date Joined Dec 2006
Total Posts : 79
   Posted 9/11/2009 9:09 AM (GMT -6)   
Neff,

Maybe your taking too much hh?

Before I started HH-2, I was on levaquin and mino for bart.... it irradicated my nodues on my shin and upper arms, but my knees started hurting(never had that before) and also was so stiff with pain throughout the day that I decided to get off it (wether it was a herx or not).. I also developed fungal infection in both big toes....while pulsing diflucan....(whats up with that??)

I got on zhangs protocol... it is killing the fungal, and is defanietly doing something to the bacteria.... I switched to hh2 and decided I would take 10 a day... well let me tell ya.... my stomach hurt so bad, and I was too sweating a lot, Its almost like my body couldnt handle the die off... better slow and easy than hard and fast as I found out.... I backed my dosage down to 6 hh2 a day and am feeling alot better while its killing off the tbis.... also, the allicin helps with die off because it helps the liver detox because of the sulfur compounds which reduces the distress caused by the toxins... If the antibiotic doesnt seem to help maybe back down on the hh2 or add the allicin..

Take care :)

Post Edited By Moderator (CajunGrl) : 9/11/2009 12:49:04 PM (GMT-6)


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 9/11/2009 7:28 PM (GMT -6)   
Thanks jojeanle! So the hot flashes can be a herx? That sure is good to know. I also have bad headaches and my shins started to hurt again. But the dark spots on my skin are fading - last summer they were very noticable and I can hardly see them this year. I also have bumps along my shins and my shins are slightly swollen above my foot. That might be better - hard to tell. Maybe it is a herx.
When I first got the HH-2 I thought it was only slightly more potent than the regular HH so I took the same amount which was 16! Boy did my stomach hurt and I had really bad diarrhea. I posted on here and found out it was double strength. As it is so much cheaper I decided to up my dose taking 10 of the HH-2 which would be 20 of the regular. Maybe that is it.
I am also taking a supplement called Rapid Response for joint and tendon damage which is helping my rotator cuff - it also kills bacteria so maybe is causing more die off.

When I felt really horrible I added 300mg Rifampin because I thought nothing was working! Maybe everything was working too much. I am not feeling any worse yet so will just wait and see.
I started the sacred heart diet today which is vegetable soup and fruit, to try to flush out toxins. My stomach hurts.
I just can't take the allicin. It makes me sick from the taste and smell.
If I feel bad because this is actually killing off the bartonella, that is a good thing and I can tolerate it. Hope that is it.
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