Pick up:
- 4 Cardiologists
- 2 General Practitioners
- 4 Neurologists
- 1 Endocrinologist
...
The list goes on for more than 35 doctors! But each one was baffled. Each came up with a different treatment, some worked for a few weeks, some made it worse. According to doctors I have chronic fatigue syndrome, sleep apnea, migraine disorder, orthostatic hypotension, and autonomic nervous system dysfunction, among others.
I began to wonder if I was crazy. Was it all in my head? It couldn't be, I love life! I have too many dreams. I want to be well!
Finally I found myself at Primary Children's Medical Center across from the doctor who was supposed to be the best, the one for me. He looked at me and said, "I'm afraid I can't help you, and I don't know of anyone in this part of the country who can."
When the doctors quit I didn't. I tried diets and supplements, and they helped some, but the success was only short lived. This January my symptoms roared. I thought I was sick before! This dwarfed anything I had experienced. I found myself unable to think clearly or concentrate. I agonized with neck and head pain. I fevered at over 103 for days. In desperation my parents took me to a doctor that had helped me some about two years earlier. The only one that had. Four years, almost to the day, since that Martian Death Flu, this doctor unearthed the answer. After doing a routine blood test, one that could have easily been done years before, I was diagnosed with Lyme Disease.
Lyme Disease?
What's Lyme Disease?
Don't you get that from a tick?
Did I get a tick, I don't remember a tick?!
I was thrust so suddenly into a world I knew nothing about, it took days to sink in. But I wasn't complaining?! At last! A doctor with an explanation why I was so incredibly ill, and what's more, a treatment plan. 'The road wasn't going to be easy,' they said. They were absolutely right! But after ten weeks of treatment I see marked improvement! I have found others with Lyme, with my same symptoms. I'm not alone!
This is my story...
This is such a common story of people who are trying to find the cause of their ME/CFS and Lyme type symptoms. Your story sounds a lot like sudden-onset CFS to me, and about 40% of people with CFS also have Lyme. Lyme treatments do not generally work for someone with CFS in the long term, although they may help for a time but going off the treatment causes the illness to return many times. One can not stay on those treatments for life. Yes, we need hope and the people around us want to help, so they are applying the common modern medical paradigm, just find the right drug and find a way to pay for it...
ReplyDeleteI have had this same 'syndrome' for 12 years, have been through the same rounds. I remember the optimism when I got my own Lyme diagnosis, finally there was an explanation. But Lyme treatments did not work, they rarely do after years of illness, one must catch the infection in the first few weeks.
Check out my own blog www.kurtsprotocol.blogspot.com, I am also in Utah. There is hope, new research is showing some of the probable real causes of ME/CFS, including those cases with Lyme. The cause appears to be a type of metabolic melt-down after certain immune and environmental stressors. For instance, a stressful trip combined with a certain type of acuired infection can combine to disable certain parts of the immune and detox systems. And the game begins.
Good luck!
No offense to Kurt, but I have to disagree. I also was diagnosed with Lyme in September of 2009,(positive even according to the CDC), and I also live in Utah. Some of your comments are worthy of looking into, but as far as the stressors go......I had a daughter diagnosed with cancer in 1997 at two years old. She was considered cured by 2002 and she is in perfect health now. My symptoms began in March of 2008, 11 years after her diagnosis. I was misdiagnosed as having mono even though the doctors told me they could not explain my severe joint pains and burning hands and feet, or the seizure-like episodes I was having or the heart attack pain that took me into the ER one evening, and they never noticed or commented on the fact that at that time my CBC was high in neutrophils. High neutrophil counts point to bacterial infections. Lymphocytes are higher when it is viral as in mono. They completely missed that little clue twice as two different CBCs had those same results. I was eventually diagnosed with erythromelalgia by a vascular surgeon who did not know what was causing it. This is an objective condition. You can see it. My hands get very red and very hot as if I had a fever and they burn and you can see and touch it. I went on the doctor amusement ride as well. I had the typical daily stressors in my life before these symptoms began. You would think if something was going to give me CFS it would have been my daughter's cancer, yet I made it through that without ever going to therapy or having any of these symptoms. I prefer to compare Lyme with cancer in that if you do not get all the cancer cells with chemotherapy, the cancer comes back which is why they do a bone marrow biopsy at the end of treatment to see if you are in remission. If you don't treat cancer agressively the first time, it often comes back with a vengeance the 2nd time. There is no reason not to think the same aggression may be necessary when treating Lyme.
ReplyDelete=) Keep trudging on Ammon!
Kristen