Friday, November 6, 2009

Dipping a Toe in the Alternative Medicine Waters (Part I)

My journey down the path of alternative medicine began due to the influence of my current doctor. She is an Internal Medicine doctor who treats many patients with HIV/AIDS or CFS. I think she is used to dealing with patients who have been marginalized or brushed off by others in the healthcare field. She has an amazing amount of compassion for her patients.

I first went to her in 2005 when I was 26 years old. I had been too sick to hold a full-time job for a couple of years by that time. At the time my health fluctuated between being completely bedridden and needing assistance to get to the bathroom to being able to leave the house for brief outings.

After doing her due diligence and ruling out other diseases, she diagnosed me with Chronic Fatigue and Immune Dysfunction Syndrome. She immediately started me on Glutathione/ATP injections, which I viewed as alternative medicine and my previous physician called “fringe medicine” and discouraged me from trying it. Needless to say, I left that previous physician for my current doctor.

I saved the original email that I sent to friends and family on the day I received my diagnosis, Thursday, May 19, 2005. Getting a diagnosis was a profound experience for me. Following is the email I sent in 2005 (edited for spelling):

I finally have a diagnosis.

It's Chronic Fatigue and Immune Dysfunction Syndrome.

I cried for an hour after I received my blood test results. I have been vindicated. Lyme disease, EBV, lupus, herpes, and many other diseases were ruled out. My thyroid, liver function, red and white blood cells, and all other USUAL things tested in a full blood work-up were within normal limits.

HOWEVER...

My natural killer cells count was 90 (normal is 300-500). My ATP count was 10 (normal is 30). These results combined with my other symptoms, current ailments, and past health history are consistent with other patients with CFIDS. I now have medical evidence that my body is not as healthy or normal as many doctors/nurses have insisted.

The doctor treating me is in Internal Medicine and specializes in treatment of CFIDS and other immune disorders. I found her through the a CFIDS support group and the Co-Cure Good Doctor List (http://www.co-cure.org/index.htm).

After more than six years of my health getting progressively worse, thousands of dollars in medical and prescription bills, and many doubting or ignorant doctors ignoring my insistence that something was wrong, I finally have hope. It took two months to get an appointment with the wonderful doctor who finally diagnosed me, but it was worth it.

The next step is treatment. In addition to paying closer attention to my diet and myriad of vitamins and supplements, I'm going to start receiving weekly Glutathione/ATP injections for six weeks to try to correct my deficiencies. It is a bit on the controversial side, but if it works and I can actually function like a normal human being for an entire day, I couldn’t care less what anyone thinks about the injections. After we see how that goes, we'll reevaluate what to do next.

I am also planning to contact doctors who have treated me in the past few years so that I may send them information about CFIDS, as well as a copy of my medical record and blood tests. I don't want other patients going through what I've been through. The worst feeling in the world is having a doctor not believe or understand you.

Here are a couple of websites to visit to learn more about CFIDS.

http://www.cfids.org/
http://www.cdc.gov/ncidod/diseases/cfs/

Thanks for reading!

Take Care,
Alyson
Reading this email brings back mixed emotions, including the pain I went through trying to find a doctor who would take me seriously.

I credit the Glutathione/ATP injections for allowing my health to improve enough for me to work full-time. I’m no longer on those particular injections because they became too painful to tolerate, but I am on different injections and other supplements…but that’s for another post.

Today's Activities: travel for work. Today's Most Annoying Symptoms: intermittent nausea and vertigo, exhaustion, muscle fatigue, sore muscles.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

6 comments:

Jo said...

This was a painful read. It seems you've come a long way in a relatively short time.

Proper diagnosis is so important. Yet, for some of us, it takes years before we get that validation and a treatment plan. That's years of being fobbed off, not believed, incorrectly treated for psychiatric disorders and so on.

I hope you are recovering after your latest trip. Take care.

upnorth said...

Wow, thanks for sharing. It really shows a journey. It is so much harder when you have a chronic illness with no definitive test. On top of being sick we have to navigate all the obstacles and skeptism out there in order to get diagnosed and treated. And even then treatment is experimental - trial and error. I'm so glad you have a physician that can help you navigate the turbulent waters of CFIDS/M.E. It's really interesting that she treats AIDS too....what does she think about the recent retroviral discovery???

p1nkg0dess said...

Thank you for sharing! I just started with an integrative health doc referred by my rheumatologist. I have a couple of supplements he wants me to start, but I have to get ANS stuff figured out first. I was really impressed with how knowledgeable he was about CFS. Since there really aren't options in traditional medicine, I think integrative MDs see a lot of us. It's good to hear that you had a positive experience with your doctor.

Sue Jackson said...

I sent a very similar letter to my friends and family when I was finally diagnosed after a year of being sick. In my letter, I explained what CFS was and how it affected me.

I'm also fortunate to have an understanding doctor. She's a family doctor who I just sort of stumbled on after dozens of specialists could find nothing wrong with me. She had other patients with CFS and recognized it in me right away.

Thanks for sharing your story!

Sue

alyson said...

Thanks for the comments, everyone!

Jo - Even if the XMRV discovery turns out to be a dead end, it's probably one of the best things to ever happen for CFS/ME awareness. It's my hope that fewer and fewer people have similar experiences to mine.

upnorth - I happened to have an appointment with my doctor not long after the discovery. Before I even had a chance to ask her about it (which I was dying to do), she brought it up to me. She talked about the application of some of the antiretroviral drugs for HIV and its possible applications to XMRV. She's not one to get emotional or show excitement, but I could swear that she was a little excited.

p1nkg0dess - It's so wonderful when you can find a doctor (or doctors) who understand CFS. Good luck with your new doctor and supplements!

Sue - It's great that you were able to find a doctor so quickly. Wouldn't it be wonderful if all doctors were able to diagnose CFS patients immediately?

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