Thursday, September 4, 2008


I've been feeling very edgy, anxious, and just plain weird today. It feels biological. I had trouble sleeping the past two nights which is concerning. The doxepin has worked very well for my sleep. I only take 9 drops but I'll increase it tonight. My brain fog has increased as well as the dizziness. It could be from the Mepron.

Yesterday I went to the podiatrist again. He said my toe looks good but to pay attention to the pain. Hopefully I won't have any more incidents with it. I have curvy toenails so it is easy for them to become ingrown. If anything else happens I'll need to have the toenails of my big toe removed. Yikes. That sounds really awful. Weird things go through my mind about it. Things like what if I have to have the toenails removed (just my big toes) and everyone goes fine. Then what if later I get dizzy and look down to see missing toenails and then faint.

The podiatrist injected kenolog, which is a corticosteroid, into the base of my big toe where a 9mm cyst had formed. Steroids are really bad for lyme and cause it to move deeper into the tissues as well as become more disseminated. I needed to do it though because the cyst would keep growing and would eventually interfere with my ability to wear shoes.

I've been on Mepron for 25 days now. I think it is helping though today feels like a setback but could be do to the injection.

I saw another healthcare provider this week who I swear was stoned. I'm sure I smelled pot. Very weird and confusing.

Since starting treatment I think I've had about 20% improvement. It's not a lot given that it's been 4 months now but I'll take it. It means I'm operating now at 45% on a good day. Again, not much but it's better than it was 6 months ago.

I feel stuck on what to do next regarding treatment. I can go see another specialist who is nationally known and get a second opinion or stay with who I'm seeing (though everyone I know who sees this person wants a second opinion for some reason). But it means forking out a lot of money for a consult. I also don't know if I should push for trying to go on an antiviral while also treating babesia.


kay said...

I am so glad I found your blog. I was google-ing "herxing" and I came across it. I have CFS; HHV-6 and adrenal insuffiency, EB. It all started with being diagnosed with 'mono', April 07 and just went down hill from there. I had to stop working this past June. I'm home on disability now, which I find degrading and frustrating. I started Valcyte, I'm on week 6 at the moment and feeling horrible, which they say is "good". It's all been such a nightmare as I used to be a vibrant, healthy, functioning person...but not lately. After reading your blog, I was reminded that I am not alone struggling with this crap. I can relate to so much of what you are feeling/saying. So I guess I just wanted to say thanks and keep writing!

Sue Jackson said...

Hi -

Glad to hear you've made some progress, even if it seems slow. My own Lyme treatment feels like it's progressing too slowly as well.

I noticed you mentioned the possibility of adding anti-viral to your treatment. I would highly recommend it. I recently learned that Lyme can cause viral re-activation, just as CFS does! The person who explained this to me said that lots of people take both antibiotics and anti-virals (usually Valtrex or Famvir) for Lyme.

When I heard this, I filled my own prescription for Famvir that I had for CFS (I was waiting for the Lyme to resolve). I felt better within hours of starting the Famvir! It has definitely helped.

I hope you continue to improve every day!


cfswarrior said...

Hi Kay-

Thanks for stopping by! It's always nice for me because it also eases that sense of isolation that, as you know, goes with this illness. I've heard of some people who have had excellent improvement with valcyte. It sounds like you were a good candidate for it. It's good that you know that you have adrenal insufficiency since that valcyte and herxing can place a lot of stress on the body and adrenal glands. Keep me posted on how you're doing!

cfswarrior said...

Hi Sue-

Thanks for your support. Yes, I'm slowly making some progress finally. I'll probably start on an antiviral after finishing up antibiotics. I asked my doctor and he said for right now take colloidal silver. Thanks for the tip on famvir. It gives me more hope for continued improvement. I'm glad to hear/read that you too are making improvement though I'm sorry that lyme is part of the picture for you too.