Some have asked me what kinds of doctors I have seen, and which ones have been helpful. This is an attempt to answer that question.
In August 2010 I saw an MD who was... well... not very helpful. At that point, I was pretty sure that even if I was tested for acute mononucleosis, nothing would show up in a blood test, but I was curious if he could do anything or recommend anything helpful. Unfortunately, I felt that this trip was a waste of the money we paid to see him. He told me simply to listen to my body and allow it to dictate what I could and could not do. That advice was helpful... but I'm not particularly good at following it. As I thought, the blood test he ordered said that I did not currently have mono.
After that, I decided not to see any doctors for a long time, and my symptoms gradually declined due to better nutrition and a consistent dosage of vitamins. They disappeared entirely when I stopped eating sugar in October of 2010, but my strength did not completely return. I thought that would come with time.
The next time I saw a doctor was not until January of 2012 - this year. My friends urged me to see a doctor during the fall semester of school (Fall 2011) but I decided to wait until I was home. By that point, I had all of the symptoms mentioned in my posts about myalgic encephalomyelitis (ME), and even a few more or at least several were more acute.
My mamma has always pursued a more homeopathic, naturalistic philosophy of healing. Being more of that persuasion myself - and slightly disillusioned by my experience with the MD in Aug 2010, I decided to see a nutritionist. I had heard of many stories of people in my church who saw a nutritionist, and after changing their diets a certain way had symptoms and conditions disappear entirely. I had high hopes. I found a doctor who saw patients at my chiropractor's office. He was a nutritionist, kinesiologist, and a chiropractor himself. He was able to recommend and suggest some things I thought would be very helpful. Under his direction, I returned to a completely no-sugar diet and put me on a liver cleanse and strict eating plan that was meat free, dairy free, and gluten free. After a month when I started adding 'normal' foods back into my diet, I felt slightly, but not remarkably, different. He ordered some bloodwork just to check some standard levels. Everything came back well within the ranges of normalcy.
Sadly, although I felt the care I was receiving from this doctor was good and beneficial, I don't think he really understood enough about ME to diagnose or specifically treat that. Also, he sadly moved away. So I started looking for another doctor.
A number of people at this point pressured me to try to pursue a more traditionally medical approach for a diagnosis or some relief, so in April of 2012 I saw an MD who ordered another batch of bloodwork, this time testing my thyroid, for Lyme's disease, and a few other random viruses. Again, the bloodwork came back completely normal aside from one test which showed that I had had mono in the past, and he didn't have any ideas or suggestions aside from asking if I thought I needed to be put on antidepressants. (I said no thanks.)
A good friend recommended next that I see a cranial osteopath. She sent me a link to The Cranial Academy so that I could search for one in my zip code. I ended up finding and seeing an osteopath, but one who does not really practice cranial osteopathy. However, his insight has been interesting. His basic diagnosis was that I have a chronic case of mono (as opposed to an acute one) - one with recurrent mono symptoms without an actual virus. His recommended treatment was a seven day dosage of an antiviral called Valcitrax. Antivirals work by tricking a virus's DNA to recopy itself - only with a faulty, malfunctioning form of the virus itself. While I was on the antiviral, I had an amazing streak of eight wonderful, energetic days. A few weeks after the treatment was finished, I also had another even better streak of nearly two weeks during which I led an almost normal, pre-illness life - volunteering at my church's VBS, cooking meals and engaging in house work, and I even started doing some light workouts. However, that streak crashed. The problem wasn't solved. The antiviral was only slightly successful, apparently, providing temporary, but not long term, relief.
I am currently looking for another cranial osteopath to see, but also researching some doctors who specialize in ME. For those of you who are looking for a doctor who has a track record of treating ME patients, I recommend checking out these lists.
http://www.co-cure.org/Good-Doc.htm
http://www.beatcfsandfms.org/html/DocLocator.html
http://www.name-us.org/Links.htm#Doctors/Researchers
No comments:
Post a Comment
Disclaimer: If you have a health resource you can't resist sharing, I would love to hear about it if you feel it will be truly helpful. I am already doing my best to fight this illness from a nutritional, structural, as well as medical stand-point. Please avoid comments with "miracle cure" stories about your Aunt Milly's granddaughter who drank coltsfoot tea for a week and has been fine ever since. I'm very thankful it worked for her in her case, but there are so many environmental, emotional, and other factors that make CFS/ME complicated and different from just an average illness. That being said, please leave thoughtful and uplifting comments below.