Thursday, July 23, 2009

Doctor Visit

I met with my doctor today to discuss the next steps. I had finished my six months on Valcyte on Saturday and was expecting to feel better simply by being off Valcyte but surprisingly I felt a little worse. Because I started to experience improvement during month 5 he wants me to continue Valcyte for another three months.

I'll be starting a treatment called Aviptidal (VIP). It's a new treatment that's geared mainly toward biotoxin illness. Since I have bloodwork that indicates that's partly what is going on I'm going to give this a try. In addition to the VIP I'm going to order a drug that bodybuilders use (I forget the name). It's supposed to help increase Melanocyte Stimulating Hormone (mine as well as most ME/CFS patients are low). MSH is an anti-inflammatory, regulatory hormone made in the hypothalamus. It controls production of hormones, modulates the immune system and controls nerve function, too The drug is currently undergoing clinical trials but the bodybuilding community discovered it so its available online. I guess it also makes people tan.

He diagnosed me with Postural Orthostatic Tachycardia Syndrome and prescribed a beta blocker. Hopefully that will help. For the past week I've been having intense and frequent (as often as every 5-10 minutes at times) heart palpitations or maybe its tachycardia. He said that in my case adding more salt won't help.

We revisited lyme and I'll most likely do Bicillin injections in the future (after Valcyte).

I will also start nebulizing glutathione once I get the it from the compounding pharmacy. I had a treatment today and thought it was mildly helpful. This will help with any leftover mold stuff and also helps with detoxification.

I really like my doctor. I keep forgetting that my brain has either inflammation or damage or both. This affects the hypothalamus, pituitary gland, my nervous system, etc...

Also, the reason we have such a hard time with sleep is because the brain doesn't have enough energy. We actually need energy to rest which is something I find interesting.

I decided to radically change my diet and am considering either the macrobiotic diet or the 80-10-10 Diet (by Doug Graham) which is basically a raw foods diet. I know nothing about the raw foods diet (80-10-10) but my doctor said this diet has significantly helped people with cfs. Changing my diet will be challenging but if it will help then I'm all for it. I'm going to go slow though.

After the doctor appointment we drove around for a little bit (his office is over an hour away from my home) to check out potential towns to live in. And then we went shopping at the outlet mall on the way back. We only visited 3-4 stores briefly but it was fun.

It's been a long day. Tomorrow I'll restart Valcyte.

I'm encouraged by the new treatments on the horizen like VIP and this MSH medication. I think they are very promising treatments-not a cure but having low MSH is not good.


Jo said...

We get nothing like this close examination over here. Dr Sarah Myhill is a controverial UK doc who believes CFS happens within the cells which is why nothing ever shows up on the usual tests done in the UK. But the reality is that if everyone in the UK who had CFS got the work ups you seem to be able to get in the States, the NHS would go bust overnight.

I'm following your journey with interest. All the best.

cfswarrior said...

Hi Jo!

It's a crime how people get treated by the medical system in the UK, as well as the States. Unfortunately none of this is covered by insurance so its all out of pocket. The President here in the States is trying to push through a new healthcare system and I think that would be a bad thing for those of us with chronic illness.

The doctor's who are covered by insurance simply shrug their shoulders and say there is nothing they can do but take an antidepressant.

Renee said...

Sounds like you are very happy with your doctor and the plan he has for helping you will all your symptoms. Progress is a good thing!

cfswarrior said...

Hi Renee!

I've fallen so behind on responding to comments on my blog posts so I'm trying a new system. I do really like my doctor. He is a kind man who has integrity.

Anonymous said...
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Anonymous said...

Hi Terri-

I've posted on your blog a couple of times. I don't know how else to contact you with these questions so I hope you are able to see this post and I'm not posting too many days after your blog post...Anyway, I live in Santa Rosa and was seeing Dr. Holtorf. I really like Dr. H but can't continue with a long distance relationship given my condition.

I was thinking of trying Gordon Medical Assoc. here in Santa Rosa and was wondering it you know anything about them. I think you see someone in this area.

I have an appt. with Dr. Lois Johnson on Monday, but tried for weeks to get an appt. with someone at Gordon. They are really bad about returning phone calls and that is a big red flag for me.

Any thoughts would be appreciated!
I'm at

thank you so much!!!

Pris said...

You do have an extremely knowledgeable doctor. Since the immunologist who specialized in CFIDS died a while back after treating me for 8 years, and helping, I've not found anyone with that level of expertise. I'm wishing you all the luck in all of these things helping!

Sue Jackson said...

Wow, what an amazing and knowledgeable doctor you have, Terri! I'm so glad for you - S/he sounds very well-informed and very thorough.

I'm glad to hear you're continuing Valcyte. When you mentioned you'd begun to improve recently, I thought you might want to continue but didn't want to seem pushy with too much advice! Now that you've gone through the bad herx, you might as well reap the benefits.

Also good to hear your doctor is treating POTS for you - it should make a big difference. If the beta blockers don't work for you, there are other treatments to try. Midodrine is often helpful for POTS.

The other new treatments sound interesting, too - I'll be interested to hear how they go!


Heather said...

You might want to try a juice fast as well. It really helps. I have major allergies and juice fasted for 21 days a few months ago. I just started another fast today. Look up any books by Don Colbert, MD (especially the book, "Toxic Relief").

nocturnespider said...

Just randomly dropping by (seem to be doing that a lot lately) and happened to read about you possibly trying the raw food diet. I just wanted to offer some advice:

You must must must get enough protein. It's one thing you do not want to get any less of, having this type of illness. Any meats will have all of the essential amino acids; eggs are a close second.