Monday, October 13, 2008

I Can't Find the Bus

The one that seems to have run over me. I'm not coming out of this downward turn like I'd hoped. Having an analytical mind is a strength except when it comes to this illness. My mind won't let me rest. I keep trying to find the reason why I'm feeling so very ill.

Is it a reactivated virus? Is it because I'm off all antibiotics? Or because I started diflucan (which I now call diFLUcan)? Am I having a candida die off? Is the lyme reactivating? Am I getting worse? Is is a herxeimer reaction? Is it from the ProBoost I started taking? Or maybe it's because the methylation supplements have kicked the methylation cycle into gear and I'm experiencing those effects.

At bottom, it's an awful feeling of helplessness and uncertainty. When it comes to illnesses like these, medicine is back in the dark ages. There is no certainty-no reliable tests. Treatments are a guessing game-an experiment. You try a treatment and wait and see. If you get worse it could either be a healing crises which would mean the treatment is on the right track or side effects or a crash.

And people wonder why I spend so much time trying to research this stuff. I just want answers. The fact is-I won't get them. At least not in the way that I want.

I'm reminded of the AIDS epidemic back in the 80's and 90's. I worked in SF back then and was involved in the community so I witnessed first hand what happened.

I had a disturbing dream last night the effects of which have been lingering all day. I'm begining to believe that bad/weird dreams might be part of this illness.

I think my brain is really tired. I'm suddenly unsure of how to spell simple words. It's a little alarming.

Thank you to those who stop by to read this blog and leave comments. It means a lot and helps reduce the feeling of isolation. I wish you all a full recovery...


Daphne said...

I'm going to to find that bus driver and read him the riot act. This is no fair.

Sue Jackson said...

Thanks for stopping by my blog and leaving a comment. I'm sorry to hear you're feeling so poorly. Given all the treatments you're doing at once, a herx reaction is very likely. Diflucan normally helps a lot for Lyme, even if there's not an obvious yeast overgrowth. Some studies suggest that the Lyme itself responds to anti-fungals.

You mentioned in your comment to me that you're thinking of starting Valcyte. An anti-viral would probably help you, but you don't want to try Valcyte right now. Valcyte is a very toxic medicine that drives your white blood cell count very low and makes you MORE susceptible to bacterial infections - not what you need while fighting Lyme. I only took Valcyte for 2 months (for just CFS, no Lyme), and my white blood cell count plummeted and I got bronchitis twice. Scary stuff. Instead, you should try either Famvir or Valtrex. They're both anti-virals that are often effective for both CFS and for viral reactivation caused by Lyme, and both of these are far less toxic than Valcyte and without Valcyte's bad side effects. I took Valtrex for 18 months with only minor stomach discomfort. I'm now on Famvir for 3 months. When I started my Lyme treatment, I felt worse and worse the first few weeks. Once I started Famvir, I felt much better within 24 hours! Since viral reactivation is a part of both Lyme and of CFS, I think the anti-virals are very important for those of us with both.

Hang in there, rest as much as possible, and I hope you'll start to feel better soon. Keep reminding yourself that with Lyme, feeling worse with treatment is a GOOD sign - it means the treatments are working.

Please feel free to e-mail me if you have any other questions about the anti-virals (my e-mai link is in my profile).


Renee said...

I am so sorry you are suffering so much right now, but I really appreciate your honesty about what is going on with you. You are a warrior in all you are enduring and the battle you have with your illnesses. I have a poster on my wall that I see every day while laying on my sofa ~ by Kiki ~ and the caption says, "Many Strong and Beautiful Women" Consider yourself one! We are all strong, courageious and beautiful as we live the best life we can within devastating circumstances.
Renee ~ Fellow Lyme and CFS ( from the lyme bacteria) "warrior".