Started round two of treatment last night.

[EmersonAilidh]

Got taken off of the Doxycycline because of the phototoxic rashes. Added in 500mg Azithromycin a day (such a high dose because I have a resistance to it. It's one of the abx UrgentCare doctors like to throw at you when they say you have an upper respiratory infection without even looking at your throat), 5mL Mepron twice a day, 500mg Alinia twice a day (haven't gotten that one yet though...), 2 tablets Artemisinin a day, 3 capsules Adrecor a day, & 2 "droppers" of Para-A twice a day. We kept the Cefdinir at 300mg twice a day, kept the Samento, & replaced the Noni with Cumanda. In one month I'll be adding 500mg Paromomycin three times a day & replacing the Para-A with ParaComp. Besides that I'm also taking my usual Adderall, vitamins (B Complex, Calcium, Biotin), birth control (not sexually active. have menstruation problems), blood pressure meds, & my not-so-usual antidepressant, which hasn't done much as of yet but I'm still hopeful.

 

We cleared the Mycoplasma! Which means that the current list of offenders is Borrelia Burgdorferi, Bartonella, Blastocystis Hominis.... & of course, the dreaded Babesia. I was supposed to have cleared the Blastocystis as well by now but oh well. As excited as I am that my immune system at least did SOMETHING (which is better than usual for that lazy SOB), I'm mad that it didn't do as well as it was supposed to. Still waiting on the NKC/T cell/EverythingElse workup from Dr. Rao. LLMD also couldn't find any signs of Candida, which I wasn't too terribly concerned about but was definitely nice to hear.

 

I might have already posted this but a couple weeks ago we confirmed that my long QT Syndrome is completely & totally gone. The cardiologist said he could see NOTHING wrong. Yay, no heart problems for me! Also, night before last while laying in bed I rolled over & my neck/back popped so loud that it sounded like a gunshot & seriously scared me. When I sat up... I could look to my sides. The Dystonia is definitely still there but is improving, even if just a little bit, for the first time since I've had it.

 

I'm gearing up for the herx of a lifetime with all of the new stuff... Definitely ready to be hiding in my bed for the next couple weeks, hah. Oh well. It'll be worth it.

Edited May 8, 2011 by EmersonAilidh

[MichaelTampa]

Great to see you're making progress.

[Bill]

Got taken off of the Doxycycline because of the phototoxic rashes. Added in 500mg Azithromycin a day (such a high dose because I have a resistance to it. It's one of the abx UrgentCare doctors like to throw at you when they say you have an upper respiratory infection without even looking at your throat), 5mL Mepron twice a day, 500mg Alinia twice a day (haven't gotten that one yet though...), 2 tablets Artemisinin a day, 3 capsules Adrecor a day, & 2 "droppers" of Para-A twice a day. We kept the Cefdinir at 300mg twice a day, kept the Samento, & replaced the Noni with Cumanda. In one month I'll be adding 500mg Paromomycin three times a day & replacing the Para-A with ParaComp. Besides that I'm also taking my usual Adderall, vitamins (B Complex, Calcium, Biotin), birth control (not sexually active. have menstruation problems), blood pressure meds, & my not-so-usual antidepressant, which hasn't done much as of yet but I'm still hopeful.

 

We cleared the Mycoplasma! Which means that the current list of offenders is Borrelia Burgdorferi, Bartonella, Blastocystis Hominis.... & of course, the dreaded Babesia. I was supposed to have cleared the Blastocystis as well by now but oh well. As excited as I am that my immune system at least did SOMETHING (which is better than usual for that lazy SOB), I'm mad that it didn't do as well as it was supposed to. Still waiting on the NKC/T cell/EverythingElse workup from Dr. Rao. LLMD also couldn't find any signs of Candida, which I wasn't too terribly concerned about but was definitely nice to hear.

 

I might have already posted this but a couple weeks ago we confirmed that my long QT Syndrome is completely & totally gone. The cardiologist said he could see NOTHING wrong. Yay, no heart problems for me! Also, night before last while laying in bed I rolled over & my neck/back popped so loud that it sounded like a gunshot & seriously scared me. When I sat up... I could look to my sides. The Dystonia is definitely still there but is improving, even if just a little bit, for the first time since I've had it.

 

I'm gearing up for the herx of a lifetime with all of the new stuff... Definitely ready to be hiding in my bed for the next couple weeks, hah. Oh well. It'll be worth it.

 

 

I am so glad to hear that your dystonia seemed to improve! My son has whole body generalized dystonia. We are on a different protocol now but his dystonia was improving with augmentin/azithromycin combination. It is getting worse again now that we dropped the augmentin. It seems to me that the augmentin/azithromycin combination works. Either one by itself or with other drugs does not. I need to explore this to try to understand why.

 

Anyway, you are the only other one here with Dystonia that I know of other than my son and it is kind of comforting to know that he is not alone. Hearing you say that you also improved helps confirm for me that the dystonia is related to all of this and now I know that both of you will beat this!

 

bill