Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
My name is Katlin. I am 23 years old and a sufferer of lupus, fibromyalgia, lymes disease...I've hit the auto-immune lottery. Not only me but my 62 year old Mom suffers from RA and Lymes. She recently came home from the hospital after suffering from large blood clots in her lungs. So thankful to the Lord and many people's prayers for pulling her through. In 2012, my mom and dad went out for the afternoon to go feed their cattle, Dad took their truck off into a ditch entirely too fast (knowing my mom has a past fusion at the c4 in her neck) and something happened that completely changed our lives for the past 3 years. My mom became so fatigued and so weak she couldn't get out of bed, she hurt incredibly bad in her head with the weakness and even said it felt like burning. We took her to the ER and they found no signs of stroke or injury. Since then it's been a downhill spiral. My mom has been in complete misery day after day with no sign of a cure or clear diagnosis. The stress and worry in turn made me, then a healthy and happy 20 year old, completely fall apart health wise, I became extremely fatigued, dizzy and short of breath most every day. I fell into extreme depression and anxiety. I had a panic attack that landed me in the hospital in early 2013. In fall of 2013, we made some headway in our journey toward figuring out where it all went wrong. We saw a nurse practitioner named Tricia Butner in Seminole, OK just a few miles from where were from in Ada, OK. She ran a 15 vile blood panel finding we had lymes disease, something called MTHFR mutation which is known to cause symptoms close to CFS and numerous disorders..including blood clotting. We were told to take methyfolate and 6 other vitamins to "cure" our condition. We didn't go back to Tricia because she claimed she couldn't treat my Mom's lymes because of all the inflammation in her body..either due to RA or whatever else...we're not sure. No doctor has been clear at all about anything, not even the cause of Mom's pulmonary embolisms. I'm just curious if anyone has any good, understandable information we could use or perhaps knows of any good specialists either in the Oklahoma or North Texas area that could help us. I look forward to hearing something :) God Bless!
Where to begin? I have just read your post. You have a lot
going on and your mother obviously does as well. First off, I'm
sorry to see all you're dealing with. At your age it must have been
very difficult to see what your mom had been going through. If you
don't mind my asking, are there any other family members, dad?
brothers or sisters to help with some of this?
I am someone who has Lyme (no 's') disease and I also have
the MTHFR mutation. So I'm familiar with these things.
I'll try to go slow because some of this is complex. It is
possible that the nurse p. you saw in Seminole declined to treat your mom because she may not have been qualified to treat Lyme
disease. That requires a specialist or rather a doctor called an
LLMD. A Lyme Literate doctor. It took me 6 years to find mine.
Some are naturopaths. Usually infectious disease doctors even
don't treat it properly. It's a controversial illness.
There is a website, www.ilads.org that you could visit.
If you go up under contacts and give them your zip code they
could send you the names of a doctor in your area, free of
charge. You could google support groups for Lyme and see if
there's one in your area. That's another way to get a referral.
Some people travel to the east or west coast to find these
doctors. Many times, insurance does not cover the costs.
As far as the MTHFR goes. If you find a good doctor,
they can work with you on this. I treat mine with supplements
including folic acid. There's a website I came across that can
explain it to you, www/,Methyl-Life.com and a 50 min.
video on MTHFR. However, the important thing is to find
a doctor who can treat Lyme and that will help both yourself
and your mom, in my opinion.
The MTHFR can cause some of the things you
have but it's not the main illness you're dealing with.
I send you blessings.