Friday, July 31, 2009

Georgetown ME/CFS Study

I've had a wonderful week. Will post updates this weekend but wanted to post this information I found while perusing the web. The CFIDS Association of America is on Facebook and this info was posted there. Here's the link to the Facebook page:

http://www.facebook.com/pages/The-CFIDS-Association-of-America/47921632107?v=feed&story_fbid=109317212107&ref=mf

I just tried the links and had problems getting to the site so here is a cut and paste link (the link to the study is provided on the site):

http://www.facebook.com/pages/The-CFIDS-Association-of-America/47921632107?v=feed&story_fbid=109317212107&ref=mf

This is a direct quote from someone who is participating in the study. This seems like an important study that is very much in need of healthy people to provide spinal fluid that can be compared to the spinal fluid of ME/CFS patients.


The Georgetown University located in washington Dc is conducting a very important study reguarding CFS. They have identified a specific set of proteins found in the cerebral spinal fluid in patients with CFS. These proteins are not found in healthy people and maybe the actual pathology of this disease itself.Upon enrollment I was informed that they are in desperate need of healthy control subjects that are WILLING TO HAVE A LUMBAR PUNCTARE PERFORMED. My girlfriend has agreed to participate with me. I am urging each and every one of you to try to recruit a healthy volunteer as these findings may very well lead to a cure of this horrific illness. Study participants will be required to stay in the hospital for a total of three days where they will undergo testing and will be paid in the amount of $400.00 for their time. I will post a link below for those of you who maybe interested. Remember, it is up to us to make a difference! Lets solve CFS!!!


Here's a link to the study itself:

http://clinicaltrials.gov/ct2/show/NCT00810329


If anyone knows anyone near Georgetown who is wondering how they can help the ME/CFS cause here's their chance...

In peace and health-

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.

Wednesday, July 15, 2009

A Success!

I went on an outing and was feeling pleased about it. I realized, as I was walking through the door, that when I have something I'm upset about or excited about or just want to share my thoughts the first people that come to mind are my partner (of course) but also my blogging buddies. I feel like we have kind of a virtual family of sorts.

I was able to do something today that would have been impossible for me six months ago. I met with some people whom I'd never met before. All of us have this disease. I'm filled with different emotions as I write. And, because I'm tired, I'm having more brain fog so I'm wanting to write everything down so I don't forget anything. As a consequence this blog post might be all over the place.

It was a wonderful experience to meet with people-in person-who also struggle with this illness. I had all these thoughts and feelings as I was sitting with them. I was aware of how much each has suffered and many times had tears in my eyes as I listened to them. I could see the pain in each of their eyes and I wondered if mine looked the same. I was struck by the similar themes that each of us talked about: the poor treatment by doctors, the thoughtless comments of well meaning people, the countless doctors before getting a diagnosis, the sense of isolation, etc...None of us were complaining by any means, we were simply talking about our lives.

I was aware of how freeing it was to be able to talk about these things and know I a) wasn't bringing the other person down b) wasn't trying to pretend I felt better than I did c) that I was being taken seriously and, most importantly, that I mattered even though I've been housebound due to this disease.

I was moved by the simple fact that I was at a table outdoors with people I liked. Such a normal thing but so barren from my life these past two years. There were times when I wanted to shout "I'm doing it! I'm outside! I'm with people! This is amazing!"

It was also great to meet these people and like each of them. I hope things work out so I can get to know each of them over time.

And then there is the fact that I'm having improvements that enabled this to happen.

As I walked back to my car I thought to myself "how wonderful to have such a normal experience." I'm not returning to my car because I just had a doctor appt or my blood drawn or had some other medical test done. I was walking back to my car after having tea with some potential friends. What a gift. And I was deeply grateful.

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.

Wednesday, July 8, 2009

Time

Where do I begin? I haven't blogged because I've been trying to absorb the latest news. One of our kitties has been diagnosed with terminal mammary duct cancer. The tumor is very large which means the cancer has spread. I asked the vet how long she has and the vet said "it depends. maybe months but she doesn't have a year." Its heartbreaking. This kitty (Tiger Lily) is so full of love. Her favorite things are laps (which equals love to her), food, and milk. She has a pure, innocent heart.

So there's me with my illness, Katie with chronic renal failure (I've been blessed that she is relatively stable-knock on wood), and now Tiger Lily.

These little beings have been my constant companions for the past two years since becoming ill. I've spent more time with them than anyone else so they are a big part of my world.

My anxiety has really increased, my nerves are shot, and I'm so terribly sad.

So I find myself once again in this weird relationship with time where, on the one hand I want time to pass quickly in terms of finishing Valcyte, getting on with other treatments, etc...but on the other hand I want time to standstill so that Tiger Lily will always be here.

Its been hard to focus on anything else or even write.

I just have to say how much I hate cancer-it took my mom at a young age, it took my cousin at a young age, my dad has prostate cancer and chronic lymphatic leukemia, it took my kitty Amelia, and now this little kitty has to suffer with it.

I had the Tilt Table Test on Thursday and passed. I was surprised as I was certain I would fail it. The cardiologist spoke to me afterwards and said it still doesn't rule out Postural Orthostatic Tachycardia Syndrome and said there was a significant change in my heart rate upon standing. I watched my blood pressure and heart rate each time the blood pressure cuff took its measurements. Laying down it averaged 88 beats per minute. Standing it went as high as 128 at one point but seemed to average around 105 beats per minute. My blood pressure was borderline high averaging about 141/92. It would drop, go up , go down and seemed like it was all over the place although the lowest it ever dropped was around 112/76. The doctor said I needed to increase my fluid and salt intake. Thanks to Sue Jackson's advice I've already been doing that although I need to drink V-8 every day. He also said to not stand in one place for very long and be careful when I get up.

I'm not sure what to think. I was hoping that I'd be able to take something that would increase my functioning. I said to the cardiologist I really want to be able to drive on the freeway again or drive without worrying about fainting. He said the next step would be to consult with a neurologist.

I did fine on Thursday and then crashed. I have all the symptoms of POTS. I'll talk to my CFS doctor about what's next in terms of the heart rate stuff.

So its been a rough go of it these past few days. I'll post a more thorough update on things once I feel a little better emotionally.

Wednesday, July 1, 2009

Hmmm...

After really thinking about it I've decided not to go private. I'll deal with the other stuff in some other way or at some future time maybe I will go private. It doesn't quite seem fair to finally be experiencing some improvements and then limit who can see it. I'm also aware that it's a pain to have to sign in to see a blog especially when one is having a bad me/cfs day.

I'm continuing to experience improvements. For the past two years any improvement I've had was short lived and limited to a day or so. This run has lasted twelve days now. I'm a bit more tired today than I have been but I've also been under a lot of stress which is never good for us.

So, I decided to seek out therapy. I figure it can help me continue to make the necessary life style changes as well as help me develop tools to be true to myself. I also want to come home to myself.

I spent all day last Thursday researching therapists who were listed on my insurance plan. I finally settled on one who sounded great, had a great web page, and good training. I had first session on Monday. Over the phone she told me she had worked with cfs patients in the past. You certainly couldn't tell during our session. She actually psychologized this illness! She actually said I developed my symptoms due to psychological reasons!!!! I could not believe it. She was surprised I wasn't working. As if I could. In hindsight I realize she has no knowledge of this illness and thinks its just fatigue. I tried my best to educate her but I was just a patient and she clearly was having none of it. I will not do therapy with her. At some point I want to put together a packet of information to give to doctor's, therapist, or anyone else so they can become educated on this. I can easily go off on a rant here. The other part that is a bummer is I only have 20 sessions per year and I used one up on her. It was a good lesson though. Next time I will ask the potential therapist how they view cfs.

Tomorrow I have my Tilt Table Test. I'm a little nervous,mostly because I don't want to crash afterwards. I've really been enjoying these improvements.

My last day of Valcyte will be July 19th. I can't believe I have only 19 days left. My doctor will put me on a new immune modulator once I finish Valcyte. Hopefully its out by now.

I haven't been able to watch the rest of the Gupta Retraining DVD's because the computer that has the DVD player is not working at all. I'm disappointed about it because the stuff I've learned so far has been helpful. It's a nice adjunct to Valcyte and the Methylation Protocol.

Has anyone else had the Tilt Table Test? If so is there anything you recommend for recovering afterwards?

Peace and Wellness to All