Wednesday, May 18, 2011

Back Up!

I'm back up. I took my blog down for many reasons. I won't go into details except to say a lot has happened and it feels too personal to talk about in a public setting. Which brings me to my next point.

Originally I had decided to stop blogging altogether about this disease and instead develop two new blogs. I'm still planning on starting the two new blogs but will keep this one to discuss treatments. However, I no longer want to share much, if any, personal information in this blog.

The past almost 4 years have been a long extended journey into the dark night of the soul. I needed to talk about what it was like to lose my health, career, finances, etc...not to mention dealing with the myriad of symptoms that I deal with on a daily basis.

I don't feel a need to discuss the dark night of the soul except to say it has led to a deepening of a sense of spirituality thanks to Toni Bernhard and my MD. I feel like I'm in a place of rebirth and rebuilding my life out of the ashes. While difficult I'm grateful to have made it to the rebuilding and redefining myself phase.

The reason I want to keep this blog is that I feel hopeful about all the research that is going on in the M.E. field. Regardless of whether xmrv or some other retrovirus turns out to be the cause we still have to treat the coinfections associated with this disease. Because that is what kills us. Similar to HIV. It's not the HIV virus that kills per se but rather the secondary infections.

I'm going to be trying some new treatments. Treatments that are evidenced based rather than guesswork and treatments based on testing resulting in an individualized treatment plan.

I saw an infectious disease MD who used to be with Stanford. His diagnosis was spot on. Rather than diagnosed me with a poorly defined name like 'chronic fatigue syndrome', I've been diagnosed with:

1. Arthropod Born Disease of the Central Nervous System
2. Myositis and Myalgia (ICD9: 729.1)

I'll be doing a high dose of antivirals along with a drug for chemotherapy along with a mitochondria cocktail. I'll start once I get my test results back. The tests are pretty extensive something I've wanted for a long time.

Here is some information about Myositis and here and here. It explains many symptoms I have including difficulty swallowing.

Here is some information regarding Arthropod Born Disease of the CNS. Also here and here.

I have taken down all my previous posts but will be providing a summary of my treatments to date.

I'm starting two new blogs. One about the birds who visit the backyard and the other focusing on Jung. I have to think of a name for the Jung one.

11 comments:

Renee said...

Good to hear what is going on in your corner of the world. How wonderful that Toni could help you out so much...and that you have a new treatment plan in place with a doctor you trust. That is always good!

Cusp said...

Glad to see you back :O) Toni's book is a treasure and I really look forward to your blog on Jung.

Think it's too easy to feel a kind of obligation with blogs after a while....but the blog can be whatever you want it to be. It's YOUR space to use in anyway which benefits you best x

At Home on the Rock... said...

I'm glad to see your blog back...you always have such helpful information. I've learned a lot from you over the last couple of years. I'm glad to hear about your Dr. too...that's wonderful to find one who is so helpful :)

Alison said...

Thanks for keeping us updated about what treatments you're doing. I started GcMAF last week. I'm starting on a very small dose so it's too soon to say if it's doing anything yet.

Looking forward to your blog on birds. I've recently gotten very into birds. There's not a big variety in my yard so I end up spending a lot of time looking at the pictures on flickr people take of birds in their yards. I do have one or two hummingbirds that come by almost every day. Still haven't gotten a good shot of them. Yesterday I gave up trying to take pics outside (I scare them away) and spent half an hour staked out at my window. Finally got a few pics but they were all pretty much silhouettes.

Also if you don't mind my saying so "Arthropod born disease of the central nervous system" doesn't strike me as a much better name than Chronic Fatigue Syndrome. I don't know, maybe just because it has the word "arthropod" in it it.

Good luck with everything. Seems like you got yourself in good hands.

Toni said...

It's so wonderful to hear from you, Terri. I can't wait to see your two new blogs. I wonder if you're seeing the doctor who was working with Dr. Montoya when I was taking the antiviral under his supervision. I'm so glad her has a treatment plan for you. Love to you, Toni

Jo said...

Awesome! Sounds like you're in a very different place. I hope it goes well for you and will be watching with interest. :-)

Pris said...

Great to see you again. I look forward to all three blogs, esp Jung, a man I've been interested in since my twenties.

Glad you've found a route to treatment you feel good about and are rising out of the ashes, so to speak!

Treya said...

This all sounds positive. It's great you are feeling in a good place.

I too will look forward to your Jung blog.

Pris said...

I want to vote but in order to access the actual voting area, this is what you have to agree to:

allow the application to access the follow: includes name, profile picture, gender, networks, user ID, list of friends, and any other information I've shared with everyone.

I'm a regular on facebook so I have a lot of friends there. I'm not willing to give up their list of names, my user ID (are they kidding?) and every bit of information I've shared. They don't need that for a vote.

If there's another way to vote i want to know but this requirement makes me a bit suspicious.

Elaine said...

Such encouraging news for you! Always interested in what might be the magic bullet for us all!

Hope that things improve for you and please do keep us posted as to how you are doing.

Blessings,
Elaine

Chronic Fatigue Syndrome said...

Great info on the treatments your doing, thanks so much for the information! It's been very encouraging!