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“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Monday, August 23, 2010

Plan of Attack

We have not had insurance since my husband left his job and started our own business three years ago.  I was not overly concerned, because frankly, I was getting nowhere with the doctors, and I didn't feel like they had anything more they could offer me.  I figured pacing and supplementation were as good as anything medically offered.

The discovery of XMRV changed things for me.  So, last week, I purchased health insurance for myself.  As soon as I get my ID card, I'm going to meet with my doctor again.  I will first ask for Klonopin and LDN, two drugs that have been known to be somewhat helpful for CFS.  Then, I plan on getting tested for XMRV.  If I come back X+, I will be requesting to be treated with the HIV drugs that work against XMRV.

I don't mind being a guinea pig.  I don't want to wait for clinical trials.  My life has been scraping the bottom for about a year now.  This summer, I barely left the house.  I can no longer go shopping, and driving any distance is difficult.  I can't imagine that side effects from the anti-retrovirals could possibly be worse than what I am already living.  I strongly suspect that it will help me, and I don't like the idea of waiting, allowing the retrovirus to continue to reproduce and gain a further stronghold in my body.

Of course, I'll let you all know what happens as it happens!  In the meantime:  Has anyone tried Klonopin and/or LDN for CFS?  What have been your experiences?

5 comments:

Renee said...

Wow....sounds like you have made some strong decisions for moving forward in finding treatment...Good for you! I don't know anyone with CFS who has used either med, But one with Lyme is using LDN...her site is Living the Lyme Life....her blog is on my blogroll....
Wishing you well with this!

Jo said...

Rachel at Chronically ME

http://chronicallyme.wordpress.com/2010/07/17/ldn-for-mecfs/

has been trying LDN for a while now.
Personally I'm hanging back until there's more information. Well, actually I very much doubt I'd be able to get any antiretroviral on the NHS for quite some time to come. Rachel was able to get LDN prescribed, but only by jumping through many hoops and finding the supplier herself. Luckily she has a supportive doctor.

Good luck with the new plan of action! I'll be watching this space with interest. ((())))

Lori said...

I'm so proud of you, Shelli!!! You go girl. I have to say that I agree with you except to offer that, in Jessie's case, her medication was her miracle. It's allowed her to be a teenager. I know that there are different degrees and she is clearly one of the lucky ones, but I think you should go for it. You have nothing to lose and just look at what you have to gain...

Dawn said...

I am happy that you have a path for yourself and will be anxiously watching along with you.

For now, I will be waiting (on the verge of leaving the workforce, holding on tight to money), but can say that already my supervisors are being more supportive of me since these articles began to come out today.

I was not aware of Klonopin and will research that a bit, as I'm already on valium and it could be an easy jump.

Sue Jackson said...

Glad to hear you are covered again, Shelli!

I'll be interested to hear whether you can get a doctor to prescribe anti-retroviral drugs for you at this stage of the game - keep us posted!

I haven't tried klonopin, but - as you now - have had some pretty good results from LDN. You really don't need insurance to get it, other than maybe covering the doctor visit. It's so cheap that its cost is below my insurance's co-pay, so I pay out of pocket anyway (and we have fairly good insurance). Again, though, you may have trouble getting a doctor to prescribe it. Some will and some won't because it's still an off-label use and there are no studies on CFS and LDN.

Let us know how it goes!

Sue