UPDATE: On September 23, 2010 I received notice from my PCP that I had tested positive for XMRV from WPI Whittemore Peterson in Reno Nevada. I had beeen dismissed by my PCP just three weeks prior. I found a Fantastic Doctor at the Northampton Wellness Associates in Northampton Mass. He put me on Valcyte and ran all the bood tests that I dreamed of having. In addition to being XMRV positive my tests revelaed that I had very high titers for hhv6, Cpn Chalmydia Pneumoniae, and Mycoplasma and CMV. It showed that I had a recent infection of Epstein Barr. I have a lot of work ahead of me but after seven years in a broken medical system I finally found my way out of the broken labryninth! I continue on Valcyte. I was also Vitamin D-3 defecient even though I had been taking 3000 IU's a day. I now take 10000 IU's a day and it helps as does the valcyte. I give myself b-12 injections and I now take a bioidentical version of testosterone that I apply to myself down-under. I have severe day-night reversal due to the damage to my HPA axis from the co-infections and XMRV retrovirus. I take 25mg twice in the am of DHEA, it is helping.
I was in sales and on the road 1000 miles a week. It began with Thoracic Outlet syndrome. Neck pain. Taken care of by Vioxx. Then things went downhill.I went on disability insurance from my employer, neck surgery for DDD. Anterior Cervical Disectomy with graph and Titanium plate, removing C4-C6 in Dec 2005.Never got better, medical world doesn't like people who don't get well. More and more pain killers nothing worked. I got the Fibro diagnos from a Rhuemy in 2008. I am a 58 year old Father of two children (now) 17 and 15. I have Chronic Fatigue with Chronic Fatigue Syndrome. I have severe chronic Pain that is in part physical (mechanical) and part super amplified pain processing from the FM parts of CFIDS. I had ACDF on 12/15/2005 which threw my FM/CFS into high gear.Over these many years my health has degenerated every year.
System is sick. Rheumy's have latest knowledge, in big Hospital, they don't want to treat you, GP is left holding the bag. They are too busy to be up to date on treatments. They don't understand Fibromyalgia. They are defensive because the CFIDS people in REAL pain need meds that they are uncomforatble prescribing such heavy narcotics. The DEA scares them as well. The Pain guy I see does not really understand CFIDS and I am just now up to speed, all though he is great at what he does. It's like having Cancer and being treated by your High School Nurse who thinks your trying to skip school! It's all eyeballs in your face and red flags in every medical chart. They see you as somebody who just wants pain meds. The CDC bio for CFIDS is a person who had childhood sexual abuse that is now making them pyscho. They don't understand that this disease is about viral loads and crashing of your neuro-immune system, yet they are often the only ones who care. You see the Docs by symptoms, one for neuro, one for CNS, one for Rheumy,this little piggie goes to the urologist, this little piggy goes to the pain center. The pain Center, what an Oxy Moron! We need medical help and validation and what we get is hidden pity for themselves for having to treat us. This said, I would be lost without the few who don't get it but still help me as they know the pain is real.
Feb 27, 2009
Apr 06, 2012