New Daily Persistent Headache Support Group

I went to a lyme specialist, got tested and all tests came back negative but the dr. was still sue I had it and put me on 500 mg oral zithromax a day, and now I've been on it a few months and I'm living a normal life now and barely notice a headache or anything anymore. The headaches are just about gone, the depression is gone, the Raynaud's phemonema is just about gone, and I'm doing great now, after 7 years of having NDPH.

That is awesome! Interesting that you tested negative for it though...was that even on igenex or just the usual tests?

I am so glad for you, there were always so many things you wanted to do and couldn't and now you can. Amazing how things can change in such a short amount of time when something actually does work.

That is amazing! Thank you for sharing and best wishes for your pain to stay away. Do you have to stay on the med or do they take you off of it after awhile? I have thought about pursuing the Lyme option more. I took Doxy for a couple months with no relief but haven't been tested yet or tried anything else.

Congratulations Placebo, I'm so pleased you are on feeling better! Hopefully you continue to do well. Thanks for coming in and sharing your story.

N.

Yeah, it´s amazing to hear how much better you are with the lyme treatment. I am glad that the doc gave it a try even though you tested negative.

Btw, how long will you stay on the zithromax?

Hi Placebo. That is fabulous news! I am so happy for you!

Hey Placebo I am so happy that you are back to life.

I'm in the middle of a 5 day migraine cycle and I'm ready to take a sledgehammer and knock myself out.

What dosage of Zithromax are you on?

Currently, my new private health insurance won't cover anything related to migraines or headaches.

So, I'm wondering how did you get the diagnosis?

Do you know of any Lyme doctors in NYC?

Do they take insurance?

G-d bless,

MJ

Hi Placebo... I'm glad you followed the lyme path we talked about. The lyme doc you are seeing is a good one, in that he's educated to know that it can take a course of abx's to get positive results on the testing. Yay for him!

Zithromax crossed the blood brain barrier if taken in high enough doses. Zithro is a good abx for headpain and usually indicates a Bartonella infection.

I'm so glad you are living life almost like me. Never thought it was possible did ya?

I ask every person that has NDPH that I have pushed the lyme stuff and then gets the lyme dx, to spread the word. Please do so. Please do like I did with you and approach people. This is the only way the word will get out. If people see that others are suffering and they can relate, they are more likely to listen.

Post edited by: Ramilin, at: 12/22/2009 06:10 AM

I'm going to speak for Placebo here... they say that you should be symptom free for 2 months before stopping the oral abx's when infected with lyme. However, this can be months to years before that happens. You also usually have to go onto a maintance abx to keep things in check and since you are never cured of lyme, you have to go back onto them as soon as you start to flare again.

But, Placebo is pain free... so now everyone knows of me and placebo... if you were reserved at what I have gone through and my pushing, please listen to Placebo....

So awesome to hear of another success story. Great work Ramilin and Congratulations Placebo - you must be so excited to feel so much better for the holiday season!!! Enjoy!!