Tuesday, July 14, 2009

Trying to Put Together the Puzzle Pieces

Now that I'm in the midst of my last week on Valcyte I'm trying to figure out what to do next. I will see my CFS doctor next Thursday. Hopefully he will put me on Aviptidal (VIP) which is an immune modulator. Ritchie Shoemaker, MD, an expert on biotoxin illness has been using this with pretty good success but its a very new treatment so there isn't a lot of information out there yet. Plus there are only two places in the US that have been approved to use this treatment. I think this will be the next big treatment out there for people. I'm hoping to get more details about it during my doctor visit. I'll keep you all posted.

Sunday, July 19, will be my last day on Valcyte. I'm very glad to have this behind me. In some ways I feel like I lost my mind these past six months. It has not been easy but I think it has been helpful. My baseline functioning feels like it has improved maybe 10%-15% so even though I'm in a little crash, its nowhere near what my bad days used to be like. I'm looking forward to getting back to myself. One of these days I'm going to do a post on how to survive Valcyte.

I'll continue with the Methylation Protocol. I think that is helping also. It's just a very, very slow process.

Trying to figure out what the next steps is like looking at pieces of a jigsaw puzzle. My "pieces" of the jigsaw puzzle lay about in the form of various test results, symptoms, what helps, what makes things worse, etc....

In trying to figure out treatment sometimes I think about the physicians who are experts at all of this and I try to figure out who's patient I'd be a good fit for. Lately I think I'd be a good fit for Cheney since I have heart involvement but also a good Ritchie Shoemaker patient because I also have biotoxin illlness.

Anyway, here's what I know about my particular form of this mysterious illness that was horribly misnamed chronic fatigue syndrome:

I have the dreaded multisusceptible genotype (4-3-53). It's the worst HLA genotype to have according to Richtie Shoemaker. I can't get rid of toxins (mold, lyme, any toxins at all) on my own nor can I easily get rid of infections like others can. In fact, Shoemaker believes people with this genotype don't get better. I refuse to believe that.

My MMP 9 is very high (350? is considered high and mine was 739) which means I have a lot of inflammation in my brain and likely heart and lungs as well.

I have low MSH (35 is low and mine was 12). MSH is the master hormone regulator.

My immune system is dysregulated as shown by the RNASE L test. My VEGF is low which means my cells aren't getting enough oxygen.

My adrenals are shot, my thyroid is not working properly, I most likely have POTs.

All of my test results would land me in Ritchie Shoemakers office with a likely diagnosis of mold poisoning (high MMP 9, low MSH, bad genotype, low VEGF).

I'd like to repeat some of these tests to see if they have changed as a result of using CSM (cholestryamine) to clear toxins from the mold, Valcyte treatment, and living in a new environment.

I think next steps would include VIP treatment (aviptadil), continuing focus on spirituality, dealing with parasites, stopping all sugar and dairy, getting my hormones balanced, and work on strength and flexibility.

I'm still very confused about the POTS. I really appreciate people's suggestions and comments. Technically, I should have been diagnosed by the cardiologist with POTS. After doing some reading I realized I meet the criteria. My blood pressure was borderline high although at one point it was 153/100 but only for a couple minutes. I'm curious how my CFS doctor is going to approach this. Plus it turns out that heart problems do run in the family. My Aunt on my mom's side has Atrial Fibrillation and my dad was just diagnosed with heart failure (mild).

Today I went on an 8 minute slow walk (its no surprise to me anymore when people almost twice my age zip by me) then climbed up the stairs to the apartment. I took my pulse and it was almost 130. Just from a walk! I'm drinking lots of water and V-8. I feel like I need to get some answers regarding the POTS stuff.

I'm encouraged by my improvements. I can now be 90% sure that I can leave the house for a small errand. I'm still housebound but before I was lucky if I could leave the house 1-2 times in a week for a very short period of time.

Being able to leave the house for a little while opens up the world a bit. Tomorrow I'm going to meet some other people who have this illness and live around here. I'm excited to meet others like myself but a little nervous too. The same fears pop up, even though, of all people these people will get it. I miss being part of a community.


Shelli said...

I feel the same way -- putting together my own "recovery plan" is a lot of trial and error, hit and miss. Little by little, the puzzle is starting to make sense.

Do you think they (doctors and researchers) will figure it out before we do?

Treya said...

It's great to hear that you are getting out a little more. I'm happy for you!! I think it's also a good idea for you to meet some others with similar illnesses. I'd love to hear how it goes... I've yet to meet face to face with another sufferer, but I've talked to one on the phone and some through emails.

Best of luck with it all.

Treya : )

Jozephine said...

It's great when you start to come up off rock bottom. 10 - 15% is a terrific improvement.

You go girl!

Renee said...

It's great you are seeing progress Terri. You have so much to deal with. It is also great that you are able to gather so much info on your illnesses and put it all together in your own recovery plan. You really have shown moxie in sticking out the treatment with V. and other meds that took a while to show results.
I have been trying to get together a Living Your Life plan in Campbell's target group and was so frustrated until I realized that I was overwhelmed by trying to follow teh Lyme protocol, CFS, protocol,and the amygdala training...now adding Joel's journey to mine.
I like the way you ordered everything and can look at it clearly. Gave me some insights into doing the same thing for myself so I can see what I need to prioritize, etc.

Sue Jackson said...

So glad you've improved a little - every bit helps!

You might consider trying low-dose naltrexone (LDN), on its own or with another, less toxic anti-viral. I've had some improvement with Valtrex and Famvir but even more from the LDN. See lowdosenaltrexone.org for info or feel free to ask me if you have questions.

Good luck with your ongoing recovery! Let us know what you decide to try next. The immunomodulator sounds promising.


Andrew said...

Just curious if you had any improvement with the VIP? Are you still taking this?

cfswarrior said...

Hi Andrew-

I had little to no improvement on VIP. It seems others who have tried this had similar results. My doctor's office found it was a relatively ineffectual treatment.

I wouldn't recommend this as it's expensive with little results.

I stopped taking it a couple months ago.


Andrew said...


Thank you so much for the response! Others have said the same thing, unfortunately.