Anyone heard of this?

[redrhodie]

Oh, I'm so sorry to hear this. I was hoping you would finally have a diagnosis.

Have you been tested for Lyme Disease?

[Crankin]

I have been tested for everything. Lyme, MS, Lupus, Chron's, Colitis, arthritis, every blood test imaginable. I've had 3 MRIs (head/neck, upper and lower lumbar), 2 abdominal ct scans, trans vag. ultra sound, ultra sound of my left leg, thyroid scan, bone scan, illiac x ray, EMG, cardiac ultra sound, hearing test, colonoscopy.
What I found out? I do have tiny nodules on my thyroid, which I have had checked twice since the original finding. They are not growing and I don't need to have them checked for awhile. A couple of my discs are a bit degenerated, but pretty much this is normal for someone my age , who has been exercising (a lot of impact at first) for almost 30 years. I have some kind of genetic marker for colitis, but I don't have it (my aunt and 1st cousin do). My rheumatologist says I could have some deep root nerve issue, which is slightly indicated on the MRI. Other than that, I am the picture of health!
I've had the weird pain on my left side for years. It usually appears at the end of a regular illness, and then it's gone. However, it's been here for a few weeks. I've also had ulcer like stomach issues since my twenties. It comes in cycles. The pain while cycling started after I started riding more than 2,000 miles a year and my speed got up to just below a 16 av. These weird symptoms always start in the summer and peak in the fall. Funny, since I started with all of this last year, I have had none of the allergies and asthma stuff I've had all of my life.
On top of this, I don't do well with thinking about illness, although I am much more relaxed about it now. So much so, that I pretty much ignored everything in the last few weeks until I couldn't stand it. Everyone tells me to stop being so fanatic about working out; I actually wish I could do more. I see people with horrible health problems doing tris and centuries and I know that at least so far, I don't have anything that should preclude me from doing more. Being active is pretty much my whole social life and I get pretty miffed when I am told to "just ride 5 miles."
I need to start practicing what I preach; more meditation and relaxation. It works for me, but I am not good about practicing. I have to get this under control, or I am not going to be a very good psychotherapist!

[BleeckerSt_Girl]

Here is just one avenue to seek more information on-

Of all those tests you have had done, I would say the the test for lyme disease is the most notoriously inaccurate, resulting in way too many false negative results. I have read that about 1/3 of positive Lyme cases test out as false negative. Also, contrary to what we have been assured over the past years, Lyme disease is perhaps not always 'cured' by the typical 30 days round of antibiotics, but can possibly go dormant in the body only to re-emerge and do more damage later on. New information is being discovered every day about Lyme disease, and it is apparently far more prevalent than previously stated.
It has so many varied symptoms in different people that makes it hard to pinpoint and is sometimes finally dismissed by doctors as a mental/emotional problem, especially when lab tests come back negative for Lyme.

I watched this documentary about chronic undiagnosed Lyme disease- you might want to get a copy and watch it....it has a lot of astounding information and really opened my eyes to some things:
http://www.underourskin.com/index.html
This documentary changed how I see things in a big way.

Lyme disease and fibromyalgia might be connected:
http://www.revolutionhealth.com/stor...e97b197213e680

Now mind you I am not saying that I think you have Lyme disease, but considering how misdiagnosed Lyme is, and how many wildly varied illness symptoms it produces, it might be something you would like to investigate a bit further. Especially considering that you have seemingly reached a roadblock in locating the cause of your multiple long term symptoms.

good luck with all this.

[Crankin]

Lisa,
Thanks for the information. Of course, Lyme was what they thought of at first, in 2005, since they knew I spent time in the woods. But, many of these subtle symptoms, especially the GI stuff started when I lived in AZ and was nowhere near any tics. I guess I could have gotten it as a kid?
The last Lyme test I had was the one sent to the lab in CA, that was discussed in the link. There has been a ton of this around here because of all of the woods, hikers, etc., so even my family doctor, who I don't necessarily like, is very aware. They diagnosed about 15 cases just in July this year. I guess I could have another test, or talk to someone about it.
I am not having any trouble sleeping (although I did last year) or depression, etc. What sort of got me interested was the woman in that link said she had ear ringing (which I do, on and off) and a few other weird things that I have had. However, these are things that you can have with Fibro. I thought about going back on Elavil, but I don't need it for sleep. I think it did help the symptoms, though because I was much better while I took it. I guess I have to decide. Right now, I just want to enjoy my long break from classes. We are going to Jackson, NH for New Years, staying at a very nice inn. I plan to x country ski and snow shoe, no matter what!

[BleeckerSt_Girl]

The last Lyme test I had was the one sent to the lab in CA, that was discussed in the link. There has been a ton of this around here because of all of the woods, hikers, etc., so even my family doctor, who I don't necessarily like, is very aware. They diagnosed about 15 cases just in July this year. I guess I could have another test, or talk to someone about it.

If you watch that documentary "Under Our Skin", you will see how doctors are possibly being given false information about Lyme disease. Thus, they are only 'aware' inasmuch as the info that is getting published and distributed to them. It's scary, and a lot of it has to do with Big Money. I won't go into it further here, but Lyme disease is more prevalent and more complex than originally thought. it's something we should all try to be more informed about. Again, it may not have anything to do with your problems.

[Crankin]

I did watch the trailer. I am healthily skeptical of all of this stuff; I see the rheumatologist again in February, so I'll bring it up then. For now, I have to get myself back on track with the "alternative" stuff that did seem to help a bit.
I read a little bit more about the different diagnostic tests on line and I am positive that I had the the "second level" ones for the IGg and IGm immunological stuff; I remember because one of my kids was born with a low IGg level and he had to have allergy shots for years. I never saw that term again until I had the blood test.
Thankfully, Scott interrupted my reading with a video chat, since he just bought a new I Book. So, I am done, because reading medical stuff on line is kind of deadly for me!

[BleeckerSt_Girl]

I agree, I think it's good to be 'healthily skeptical' about all things medical!