To Hawaii and Back

WOW! I actually made it to Hawaii for a week and back. See more about my trip at my other blog. I actually did better in Hawaii than I have been doing in a long time! Why? It wouldn't have been the heat; the temps in G.P. have actually been higher this summer than it was in HI. (My feet still swelled alot from the heat and I had to keep ice and antifungals on my toes,). I think the main reasons were: 1. I had access to a pool at the hotel and I worked out in the water twice a day (as opposed to my usual 3x a week); 2. I had a good night's sleep every night, no jet lag (who knows why?) 3. my husband was available and very willing to do all the lifting and hauling baggage (bless him); 4. I used wheelchair assistance at all the airport connections. Other factors may include the higher oxygen levels and humidity, the stress-free schedule, and the minimal road travel involved. I do fine on planes; in fact I enjoy riding on them. But I think reasons 1 and 2 are highest on the list. Plus I can't dismiss the fact that many people were praying for me. So I have learned from this trip that I should rearrange my schedule to get water exercise every day. At least I can try to keep my renewed health. What a relief! The very day we left I didn't think I could handle the trip because my stomach was cramping. But I took hyoscyamine (prescription for stomach cramps) and this time it worked--just in time for the travel to the airport. Thank you God. I was dreading this trip for months, kicking myself for making the reservations, but my husband would not give up on the idea. It has turned out to be a wonderful boon to my spirits.

<script async src="https://pagead2.googlesyndication.com/pagead/js/adsbygoogle.js?client=ca-pub-7412919396529588"
     crossorigin="anonymous"></script>

Popular posts from this blog

Our 24th anniversary

I have been using natural forms of the ISAC fibrin treatment, as described earlier on my blog: namely, blood thinning substances such as aspirin and grape seed extract, and lumbrokinase to break down the fibrin. I have not aggressively sought treatment with heparin, as it would require some travel on my part, as well as setting aside my family responsibilities, and that is a huge obstacle, given my condition. I wouldn’t expect the natural route to have very immediate effect, as it can take up to a year even with heparin. In the meantime I have been tested for and seem to be positive for two viruses: Epstein-Barr and HHV-6. They were antibody tests, and only indicate a history of infection. I would need to get tested again to try to determine if the infections are still active. In addition, Dr. Berg has emailed me saying my ISAC results indicate there is SOME live viruses present in my blood, and he suspected they were the two mentioned above. So I still need to confirm that is
Read more

Starting on ValCyte

I went to see my provider on Friday, armed with more research I found on HHV-6 and EBV. I discovered information on ValCyte (ganciclovir) which has shown positive results on CFS patients with both viruses in two studies by Jose Montoya of Stanford University. To my surprise, Mary Lou had heard of ValCyte and had prescribed it once before but it was so expensive the patient opted not to take it. I am soooo grateful that God has provided John with a teaching job that gives us good insurance. It will cost around $13,000 for the six-month course of this drug, but I will only pay $2800. God is so good! The book "From Fatigued to Fantastic"  describes the protocol, and Mary Lou is following the book exactly. There is bloodwork to be done regularly to check for side effects. Now we wait, pray, and see. It can take four months before patients feel any better. The drug works to stop the viruses from replicating their DNA, thereby stopping reproduction, and they eventually die
Read more

"I'm on a new drug, one that won't make me itch..."

So I saw my N.P. last Thursday and she has taken a fairly new tack. She used to favor alternative therapies, but after being reviewed by the state authorities, I think she's gotten gun-shy and is following the mainstream protocols. She wanted me to try one of the three "new" drugs now FDA-approved for fibromyalgia. All of them, from what I can tell, are not much different from what I've tried through the years. They are all called anti-depressants "but not prescribed to me for depression" (I've heard this before!). The older drugs were called SSRI (Selective Serotonin Reuptake Inhibitors). The new one I'm on, Sabella, is an SNRI (Serotonin and Norepinephrin Reuptake Inhibitor. This is based on the theory that FMS is caused by a chemical imbalance in the Central Nervous System, or brain. She said it increases dopamine in the brain. I am skeptical that it will help, but I'll give it a month. I have to titrate to the therapeutic level, and if I go
Read more