Hi Sherri,
The hot and cold is awful sometimes and this sounds mad i am hot and cold at the same time i go clamy all over my skin and go goosebump but not feel cold.
With the EB can cause linging infections. There is a forum as you prob know for CFS and fibro and plantel and others are very knowledgeable they might be able to help. Sometimes fibro manifest itself in strange ways it is different in each person they say that CFS is just a different manisfestation of the same illness.
Good Luck and keep me posted.
Hi Sam,
His labs are for the most part normal with only some componets coming back abnormal. This has the doctors perplexed. No one has diagnosed him with CFS. I will run it by his doctor. I have Fibromyalgia myself. What you described is exactly how he feels. The hot cold thing drives him insane. The last couple of months he's been having severe "hot flashes" where he is so hot he can't cool down but no fever. This is the worst the hotness has ever been. Sometimes even on a hot day he's cold and under a blanket. Thank you for your suggestion. Every one helps and I check them all out and pester his doctors with every single one. Thank You.
Sherri
I know his bloods are coming up as adnormal so it could not be chronic fatiuge sydrome or fibromyalgia?? CFS is linked strongly with Epstein Barr. Worth considering. Causes wide spread muscle pain IBS and bloating and reflux,headaches and mirgraines,fatiuge,body temperture changes without fever so you feel hot then cold,palpatations,neck,back,hip pain. to name a few.
sam
Hello,
He was tested for most of that. His vit D was low. Was on perscription vit D, levels were rechecked now he takes OTC vit D daily to keep his level good. We've been to the :
Gastroenterologist, Endocrinologist, ENT, Nephrologist, Neurologist, Infectious Disease Specialist, 2 Rheumatologists. They are all in agreement that something is wrong with him but they don't know what. Some have tried to think outside of the box to try to figure out what's wrong with him but they're all coming up empty. His diagnosed illnesses are: Pseudo Tumor Cerebri, IBS, Reflux and Migraines. All the doctors agree that what has been going on with him for the last five years is unrelated to those conditions. He had Epstein Barr in the past. I will double check with his doctor to see what of the tests you mentioned were not done. Thank you so much for your input.
Hi
Thanks for writing to the forum!
I am sorry to hear about your son. I can understand his frustrations too. I would suggest you check if the blood levels of the following were done: potassium, calcium, sodium, vitamin B complex, or vitamins B1, B3, or B6 and Vitamin D. Kidney and parathyroid functions too need to be looked into.
If your son has gut issues like bloating cramps etc then consult a gastroenterologist. Crohn’s disease, ulcerative colitis, IBS and Celiac disease all cause several symptoms that one would not associate with a gut problem.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
Thank you for responding. He was tested for Lyme, he came back at the edge so they gave him how many months of antibiotics and retested him. Negative. The infectious disease specialist said Lyme wasn't the problem. He is getting sicker week by week. Now he is getting depressed because he's tired of being sick and the doctors can't figure out what's wrong with him. Blood work on all systems and organs comes back 80% normal and 20% abnormal. Enough to tell them something is going on but not what. His blood work is very strange. They are puzzled.
If you have an illness yourself I wish you the best of luck and better health and relief.
Has he ever been bitten by anything like a tick, there is something called Lyme disease that has a lot of the symptoms you describe, ask your Doctor if he can get you the right tests to find out I believe it is the Elisha test and the Western Blot test, even if he was bitten many years ago it can come and go, if he was positive they would give him some anti Biotics for a while. Put this into your search engine you will find ..lymenet.com will give you more information, Good Luck