rcquilter's blog

Natural

Submitted by rcquilter on Fri, 2016-09-09 16:26

Hello everybody,

It's been 6 months since I posted. I have chronic active CPN. Does anyone know of an alternative to Abx? I am suffering. Every 7 years I get a flare up that leaves me with a new symptom.

Thanks,

Enjoy your day.

Steroids

Submitted by rcquilter on Thu, 2016-04-14 16:54

Hello everyone,

I have been off the Abx since August, and I don't plan to get back on because I am afraid of how much worse I might become. My cpn IgG titter is 1:64 and hasen't changed in 3 1/2 years of Abx, and I haven't seen any signs of improvement. I have an Epstine Barr titter of IGG of 1:02.

I haven't taken steroids in 5 years. I have been taking 300mg of Biotin daily for 7 months, and a lot of other supplements. I feel horrible, so I am considering getting back on steroids. Does anyone have any suggestions on this.

Thank you so much,

Rachel

VALCYTE (Valganciclovir 450mg)

Submitted by rcquilter on Fri, 2016-03-11 14:49

Hello everyone,

I would like opinions on the drug Valcyte. Dr. Montoya at Stanford perscribed it for me. Dr Powell, and Dr. Stratton think it is worth trying. I am concerned about the side effects on the central nervous system, so please send me your thoughts on this. Dr. Montoya said it may reduce inflammation in the brain, and it will also help with my Epstein Barr lab test titer which is a little high at 1.09. (IGG should be less than .90)

I couldn't bear restarting the Abx, and I never saw a glimmer of improvement in 3 years.

I am interested in fecal transplants from a healthy donor. I took a lot of Abx during my childhood due to various illnesses. This may likely have had a detrimental effect on my gut bacteria.

Ivermectin

Submitted by rcquilter on Mon, 2016-02-01 17:49

Hello everyone,

I really apprecieate all of your feedback. I got off the Abx again after a 2 day restartbecause it was too intense after a 6 month holliday from the Cap. I still am bedridden since I got on the Cap. My Cpn level is exaxtly IgG, 1:64, and it should be less than 1:64. It's been the same since I started the Cap 3 years ago. Does anyone know of another way to get rid of the Cpn besides the Cap? I'm considering Ivermectin. I have severe optic neuritis. Does anyone have any thoughts about Ivermectin and eyesight? I have had MS for 19 years. I'm in my late 30's. Please give me your thoughts. 

Thank you,

Rachel

Lemtrada

Submitted by rcquilter on Fri, 2016-01-22 22:40

Does anyone know if it is possible for the Drug Lemtrada to Kill Cpn? It requires a once a year infusion for 5 days of Limtrada and a 5 day dose of steroids. The following year it is done again for 3 days, and then it is finished.

Encouraging Stories

Submitted by rcquilter on Fri, 2015-10-30 19:44

Hello everyone,

This is hell. I am on my 4th year of Abx with Dr. Stratton's protocol. I'm currently taking a holliday from the Abx suggested by him. I have no strgenth, and I am like a wet noodle, but my mind is sharp. I haven't had a glimmer of inprovement. I would really be grateful for an encouraging true story.
Thank you,
Rachel

Help -- My doctor is retiring soon

Submitted by rcquilter on Fri, 2014-12-19 20:45

Hello everyone,

My doctor is retiring soon, and I need to find a new local doctor to perscribe the andibiotics for the CAP. I'm located in San Jose California USA and I need a doctor that will do this in Santa Clara county. I'm in the San Francisco Bay Area. Does anyone know of or have suggestions for a doctor that will do this in my area? 

 

I'm on my 3rd year of the CAP, and it is crucial that I find another doctor soon.

Thank you,

Rachel