posted
Okay, I was so cautiously excited that I finally tested positive for bart, and that it seemed that I was having some reaction to the meds (rifampin/zithromax).
Soon after the first dose, my heart started flip-flopping, and there was an increase in my arrythmias. The next four days were wonderful. I felt so much better, mostly, no heart issues, a clearer head, a feeling of well-being, and the awful electric/buzzing/trembling feeling was gone.
Unfortunately, on the fifth day (yesterday), I was awoken by the terrible buzzing/trembling, and have felt terrible again for the past two days. My joints have returned to excessive cracking and pain, and my muscles are painful, with increased muscular back pain leading to headaches, and sacroiliitis pain is back.
What's going on? Could the four days of improvement just been a coincidence? Can this be some kind of herx? I'm so discouraged, because I haven't had hope for so long. I haven't allowed myself to have it, this, being the reason. It's always a let down.
Has anyone else had a similar experience treating bart?
Posts: 418 | From NJ | Registered: Sep 2007
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Lymedin2010
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posted
By day 7 I felt like I was declining. I think Rifampin made my Doxy and Biaxin less effective ( know contraindications) and I was getting worst.
Similar symptoms occur if I simply stop Doxy and Biaxin, so that is how I was able to tell.
I never tested positive for Bart or Babs, but have clinical symptoms of both. I have the burning at the bottom of feet, tremors and vibrations, night sweats that come, red petechia, stretch marks and shortness of breath.
Posts: 2094 | From NY | Registered: Oct 2011
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lax mom
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I tested IgG positive for Bart. The first few days of treatment were horrible, then a few days of normalcy. Then every weekend, I would have a fluish flare. After a few of these cycles, I stopped flaring and my LLMD switched things up.
First three to four days of cipro I felt great. I thought finally Something is helping. Then I started feeling badly in the way you describe.
I started two weeks ago. Up through yesterday I felt awful but I seem to be coming out of it.
When I described the way I felt the first few days, followed by the herx my llmd sounded truly excited and hopeful. It sounds like a herx to me. Detox is helping but I think rifampin and cipro are both really powerful drugs. Hang in there.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Lymedin2010-Are you still treating bart? Did you treat babs? Have you had any improvement in your bart symptoms?
laxmom-what med were you using? Are you still treating?
pme-sounds just like me! I haven't had any reactions to meds in 12yrs of off and on lyme treatment that were this pronounced. I felt like maybe I could finally be optimistic. This was such a let down, and sad to say..I'm kind of mad at myself for actually having a little hope.
I'm not sure if this is a herx, or just back to my regular symptoms. It's so discouraging.
What are you using for detox? I think I probably should be on a cyst buster, too, because of the zithromax but the doc didn't want to give it to me. I guess I'll pull out the grapefruit seed extract. -------
Thanks for everyone's input. I'm hoping that this is a herx. I wasn't sure if people had these types of herx reactions with bart treatment. I know that insomnia can happen, but, wasn't sure about all these nerve symptoms. They really stink!
Posts: 418 | From NJ | Registered: Sep 2007
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lax mom
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Keep the hope. You will see that it comes in waves.
In the beginning I was on Septra, Zithromax and Plaquenil.
Now I'm on Bicillin LA (I think it's to cover Lyme more than Bart?), Septra, Zithromax, Plaquenil and a billion supplements.
During my next appt, I will be trading out the Septra for something else...I don't know what.
For detox I am using: Glutathione, Sydetox, Pekana Itires, apo-hepat and Renelix, Burbur, Parsley, ALka-Seltzer Gold as needed
posted
Which med is treating the bart? Septra? I had bicillin years ago, and have also been on Septra, Zith, and plaquenil (w/biaxin) before. All, with no results. So discouraging.
Since I haven't had any major reactions (improvements or herxes to anything, including rife), I left the idea of lyme and co. for a few years looking for something else. Can't find anything. Blood tests are always normal, except lyme and viruses. Thyroid was hypo on one test, but, always normal otherwise. Did a test run on armour thyroid, and nothing, again. Had one high ANA test, went to Rheumy, who retested. Of course, it was then normal, as was everything else. So frustrating.
Thanks for the list of detox methods. I need to look into this.
Posts: 418 | From NJ | Registered: Sep 2007
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lax mom
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I think Septra...because I couldn't tolerate Rifampin.
posted
laxmom...I'm going to bother you again. I just noticed that you are HLA-DR4+. So am I. They tested me because I had the lymerix vaccine, and this gene is associated with bad reactions to it. Why were you tested? My llmd at the time didn't thing that my problems were due to the vaccine, however, because I had no joint swelling (lots of joint cracking and pain, though).
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Lymedin2010
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Yes and no and it's hard to say.
Torturous pressures in my head and neck, that prevented me from walking were all gone with Doxy and Biaxin. They did come back and are off and on months later, but do not impinge my walking.
My drenching night sweats stopped, but I do get occasional low level night sweats. Seems like it is in a cycle with the sweats I tend to get it more starting in Sept and in Oct it gets a little worst.
Burning of feet and numb hands also went all away and then came back recently. I think because Bacillin LA and/or Cryptolepis it subsided greatly again in the past two weeks.
You sound a lot like me, where I don't herx on many ABX, yet I have so many symptoms.
No herx on: Biaxin, Zithro, Ceftin, IV Rocephin, Mepron, Flagyl, Tindamax, Bactrim DS, Rulide.
I did herx on Doxy for 2 weeks and by week 3 most symptoms melted away, although I still felt invaded in a way. Amoxi I herxed on 1 pill only and then nothing afterwards, only got worst. I also herxed a bit on Minocyclene, similar to what Doxy produced but not as pronounced.
Posts: 2094 | From NY | Registered: Oct 2011
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lax mom
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amk33: no bother at all...I'm stuck at home flaring everyday.
I don't know why I was tested. My LLMD told me that it meant that I can't detox and that I'm prone to going auto-immune...so I detox and detox and detox some more, take Kaprex AI and Plaquenil to prevent the auto-immune stuff.
I just had mthfr testing done...waiting on the results of that.
I don't want you to give up hope, I know when I felt really good for 3 or 4 days I was thinking can this last? Which it didn't. But today I am feeling much better so I think it was a herx.
Detox..same as most.....I use a biomat to sweat plus liposomal glutathione, alka seltzer gold, lots of lemon water etc.
I definitely think the AS gold helps a lot. And I am taking lots of mag b/c with the herx came lots of muscle cramping and twitching.
Keep us posted!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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HLA-DR4 is a genetic marker that is associated with some autoimmune diseases, such as rheumatoid arthritis, lupus, and MS. It also is indicated in treatment-resistant lyme arthritis and vaccine injuries. It's primarily present in people of Northern European descent.
Some people that had the Lymerix vaccine during the trials developed severe treatment resistant arthritis and lyme symptoms. These people were positive for the HLA-DR4 gene. The pharmaceutical company knew about it and brushed it under the rug, and continued with the release of the vaccine.
Many more people were injured, and the vaccine was pulled from the market, citing "lack of sales" (covering their ass). There was a class action suit by the injured, which they lost.
Besides the role this gene played in this vaccine's adverse events, it may also play a role in adverse reactions to other vaccines.
Posts: 418 | From NJ | Registered: Sep 2007
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Lymedin2010
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I think the problem with Lymerix vaccine is that they accounted for the Spirochetes and the Cyst forms. The spores or granules are much harder to identify in those that are not chronic.
They are very tiny dancing dots, that represent the smallest unit of the Spirochete. Smaller than the cyst, which is really a coiled up whole spirochete.
They only contain a wall, DNR and/or RNA & that is it. Basically a container & the package. This is all it needs to spread & continue.
It is my theory that this is the most transmissible version. It can be contained and supported by many body fluids & perhaps can be embedded in the skin and shed off. Simple tests can verify this & I hope to conduct them one day.
These spores are more easily carried by other, non-typical insects, such as mosquitos and other biting insects. Those that may not be a typical BB carrier.
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