Chronic Fatigue Syndrome and Fibromyalgia

sisao · Posted: Mon Jun 02, 2008 2:46 pm Post subject: A Recovery Story!

Yes, you CAN beat this!

Hello, I am a 22-year old male, and I dealt with CFS and its debilitating symptoms for about a year. I have been meaning to post my story on the web for awhile and this seemed like a great place to start. I will try to condense this as much as possible and keep my narrative based on data from tests and lab results. (Although if you would like to hear more and/or how my faith played a huge role in my recovery process please, please, please e-mail or IM me! PLEASE!). Well, enough with the introduction, here it is:

It all began in mid-March of 2006. It started with, what I am sure will come as no surprise to any of you, a flu-like illness. Acute symptoms lasted for 2 weeks and resolved. I felt relatively fine for one week after, but it soon all fell apart. My symptoms returned and this time I had a severe tingling in -my hands and feet. I went to the neurologist, got some tests and found out I had Mycoplasma pneumoniae. Treatment with anti-biotics helped resolve most of the tingling, but I still had a sore throat and muscle soreness.

In interest of keeping this short, move ahead 2 months and my condition had not improved, and I was actually worse. The sore throat was constant, as was the deep muscle ache in my right arm, on the opposite side of the elbow. My energy levels had also declined VERY sharply. Move forward again to July and I had a tonsillectomy to try and resolve the sore throat. (If you would like specifics on how I arrived at that conclusion, please contact me - it was hasty and ill advised). It did not work, and I was quickly developing more and more symtoms.

It seemed like every month brought with it a new ailment. I had this burning sensation at the top of my mouth, then I added severe nasal pressure to the list. I had also developed a nasty pain in my ears that would not go away, and my other symptoms were still getting worse! I would have good and bad days, with fluctuations in the severity of my symptoms, but they would always return worse that when they started.

This brings us to about November of that year (2006), and my body and mind were badly broken. I won't go into details because I am sure most of you know exactly what I am talking about. I had bounced from doctor to doctor with all of my lab results coming back normal or inconclusive(I no longer had the Mycoplasma Pneumoniae). The first breakthrough happened when I saw an infectious disease doctor and a lab test revealed my CMV(Cytomegalovirus) IgG antibodies were through the roof. I will try and find my labs filed away at my permanent residence (I am staying somewhere else for the summer) to give you more accurate information. The doctor said it could be normal and recommended NOTHING! This I couldn't believe and dis-heartened me even more.

Then December came and everything seemed to come to an excruciating climax. I was in despair and I hurt more that ever. Then I met Dr. Biels(if you would like more info on this excellent rheumatologist please contact me.) After another battery of tests and her examination she diagnosed me with CFS and believed that CMV was the source of it all. She said that even though I did not have an active infection(IgM antibodies were negative) that she had seen this before and that viral particles still replicated in the bone marrow. She also found that I had very little Carnitine in my system. So she prescribed the following medications and supplements:

-After breakfast:
833 mg Magnesium Malate
500 mg Omega-3
100 mg Co Q-10
1 gram Valtrex(Valacyclovir) - this is an anti-viral to treat the CMV, mainly used to treat genital herpes, you may have seen the commercials
660 mg Carnitine (Levocarnitine)

-After Lunch:
833 mg Magnesium Malate
500 mg Omega-3
100 mg Co Q-10
660 mg Carnitine (Levocarnitine)

-After Dinner:
833 mg Magnesium Malate
1 gram Valtrex(Valacyclovir)
660 mg Carnitine (Levocarnitine)

It took three months to notice improvement and even then I was skeptical.
Around late-March 2007 I was actually seeing progressive and constant improvement. No wild fluctuations or new symptoms, just a very slow but steady improvement. Again, I would love to elaborate more on the specifics, but I will keep this as short as possible. Come June of that month I had improved greatly and was still getting better. I even went off of the Valtrex for a week, but soon crashed which led me to believe that the Valtrex was undoubtedly attacking the source of my ailment.

Today I am almost completely recovered and I have the energy levels I posessed before I got CFS. many of my symptoms have either gone away completely or are GREATLY reduced. I still need to get plenty of rest and not over-exert myself, but compared to where I was I would indeed consider myself recovered.

I am sorry this was so long and thank you for reading it, I hope you will ask questions so I can elaborate more on the specifics of my fight with CFS. Please contact me through e-mail or IM as well! We need each other to get through this!

-Taylor
email: comp_oasis@yahoo.com
AIM: ComputerOasis

Tina · Posted: Mon Jun 02, 2008 3:31 pm Post subject:

wow, thats really great. I love hearing recover stories!
also i think its pretty cool that you got better with Valacyclovir. Im really sick of the alternative medicine thing. I want some real drugs that can help me.
Did you have any viral infection or just the mycoplasm?
I tested negative for the mycoplasm, but i wonder if the antiviral would help me anyways. I really want to give it a try, but am having a hard time finding a doctor to give it to me.

thanks for the inspirational story

Tina

sisao · Posted: Mon Jun 02, 2008 5:58 pm Post subject:

I would definitely get tested to see what level your CMV antibodies are at in your blood. You could also get tested for Epstein-Barr. I definitely believe, based upon my experience and lab data, that CMV was the trigger and root cause of my CFS.

I also believe that CFS can be caused by a vast array of differing methods, and treatment will differ for everyone. I just know that if I reduce my Valtrex, within a week I can feel myself slide back and it takes about a week to get back. (it took 3 months initially!)

Now for what you should be looking for. In my labs the IgM antibodies were undetectable so i did NOT have an acute infection. Or at least thats what the labs said. My IgG on the other hand was out of control. On the lab sheet it says the norm is 0.0 to 2.0, and I was at 15.2! Now i dont exactly know what those decimal numbers mean (parts per million? percent detectable?), but that was alarming to me. The infectious disease doctor said it could vary from person to person and didnt advise treatment. My rheumatologist on the other hand suggested immediate anti-virals. So if your levels are like mine, maybe Valtrex is for you.

Chronic Fatigue Syndrome and Fibromyalgia

A Recovery Story!