Need answers male 54

You might have fibromyalgia. Fibromyalgia affects muscles, tendons, and ligaments in all four quandrants of the body. We also have fatigue and some cognitive memory problems. All our blood work comes back normal, also. It's just something to think about.

I am a moderator on the fibromyalgia forum. You might want to go over there and the very first thread on the forum is called Fibro 101. There are links to good info about fibromyalgia. You might want to check out the links called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You should be able to see if this fits what is going on with you. Feel free to post questions, too. It's a very active forum.

Sherrine

Look into Lyme Disease and lyme co-infections such as Babesia and Bartonella. Those infections cause all of the symptoms you describe. You will need to see a LLMD (lyme literate MD) to be properly evaluated for lyme disease. The testing is highly inaccurate. You can find more info. on the disease and finding a LLMD here. There is also a Lyme Forum on Healing Well
http://www.ilads.org

Keep in mind that lyme testing is very inaccurate. Make sure that you get the full result for any lyme test (not just, it's Negative). You need to know what kind of test it was and what the numbers or bands were.
There are many reasons that the testing for lyme is inaccurate, here are a couple:

-The standard CDC protocol of the ELISA and Western Blot was never meant to diagnosis. It was meant as a screening tool only. It states that on the CDC website. In Virginia, a law was recently passed that requires physicians to tell their patients that they could still have lyme disease even if the test is negative.

-The standard/CDC Western Blot has removed many lyme-specific bands. For example, band 31 is highly specific, but was removed because if someone had had the lyme immunization, it would be positive.

-I recently saw an immunologist that explained why the ELISA and PCR are not a good test for lyme. It was complicated and I didn't fully understand it, but the main pt. I took away from it was that the bacteria hides in the tissue and in an intracellular form so finding it in the blood is difficult.

My recommendation is for you to see a LLMD as soon as you can. You can go to the Lyme forum on Healing Wll and get info. about finding a LLMD on there. A LLMD will order an IGENIX western blot. Another test that is new and shows a lot of progress is a culture test by Advanced Labs in PA. It's expensive, but worth it because if the spirochete grows, there is no denying that it's 100% lyme disease. If you can get your PCP to sign-off on those, that would be good info. to take to a LLMD.

Doctors think fibromyalgia is a neurological problem.  Go into Fibro 101 and the very first link is an interview with a top doctor specializing in fibro and it explains this.

 

Sherrine

Just back from the neurologist brain MRI and EEG is normal she doesn't think it's neurological.( Of course when she walked in and said I look good I honestly wanted to slug her!!! ). Sending me for mor blood work! It's all I get!!
I was supposed to go to the mayo in Jacksonville on 11/7 but my father took a turn for the worst health wise I had to go to ct he passed. I am paying dearly now with the exhaustion from the trip north. I waited two months for that appt next one is in February.
I think the symptoms were coming for a while but then just hit me real hard if that makes sense! I do think I have CFS I think it even more after every test comes back normal! I am now getting angry and depressed! I read of a place in Miami that deals with CFS anyone have any input?? Also my legs have been real weak the right one with pain especially with the getting in an out of cars! I feel let down by the Drs I've seen

Testosterone levels normal?  Sedimentation rate levels alright?  Cortisol?  Just thinking off the top of my head some of the items that can contribute to fatigue/brain fog if low.  I have also had experiences with docs who only base things on appearances and not what you tell them.  It is very hard to describe abstract items like fatigue or fogginess to doctors.  I even went to the Mayo clinic a couple years ago and they didn't know what to do.  My current doc is finally dialing in on things, but he takes the time to listen and really go over my story.  He has questioned things that others did not.  So you are right, finding the right doc is crucial to being given the right treatments.  So Dr. Klimas is that booked.  There are a few others out there if you are willing to spend the $ and travel.  Be patient, which is hard...you haven't been ill all that long so things can turn.  Keep us posted.

Tylersdad, I'm so sorry for everything you're going through, but the sad thing is this is how you get a diagnosis of CFS. It takes a long time to get a diagnosis because everything else has to be excluded first. There was a time before I was diagnosed that I took a break from doctors because I was just tired of it, tired of all the tests and all the things I had to go through and everything came back normal. I was diagnosed with fibromyalgia first then about six months later I was diagnosed with CFS. Does your doctor or your rheumatologists believe in CFS? I mean a lot of doctors don't even think it exists so you need to make sure that your doctors are on board.

Wow, your oxygen levels are very low and this could definitely be caused by Chronic Fatigue Syndrome. Today my blood pressure was very low, and I could tell my oxygen level was low, I was very lightheaded. Is your Dr. going to do anything about your low oxygen level?

Your all over body aches are definitely a symptom of Chronic Fatigue Syndrome. But as Sherrine said your symptoms could be caused by fibromyalgia. It is not unheard of to have both, I do. Even though you are getting tired of the tests and doctors visits, you have to continue until you get a diagnosis. Once you get the diagnosis you can stop. Although there is not much that can be done if you do have CFS, at least you will know it is not something life-threatening. And that gives you a sense of peace at least.

You said your father passed, I am so sorry for you. The stress you must be under must be making your illness a lot worse. Stress is very bad for our illness, and you will be in my prayers and in my thoughts. My husband died about four years ago, and it threw me into a very long depression and my CFS really flared. I hope you are doing okay.

Many gentle hugs, Denise