Help my girlfriend solve medical mystery

[quote]whirledpeas wrote:

LYME'S DISEASE

get tested...more than once.[/d

Nope... Two separate tests and negative....

Her spirits are actually up a hit as she has been a bit less tired (still sore) and feels a hit better lossing some weight.

Diet is the Dukan. I dont agree with it,but you can only say so much.

Symptoms are often overlooked for ALS: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm

non-specific symptoms with normal medical evaluation generally do not respond to pharmaceuticals. searching for a diagonsis and label prolongs the agony.

i suspect she needs psychological support to cope with the symptoms, healthy eating, appropriate rest, and gentle exercise. additionally, an accomplished hypnotherapist can often uncover hidden anxiety and depression. open minded patients might fimd symptomatic relief from acupuncture.

Don't listen to the psycho-somatic babble propagated by the mainstream medical community. Get her natural killer, CD4, CD8 counts measured, C4a, RNAse-L and possibly IL-6, 8, and 12 to rule out myalgic encephalomyelitis. She can do a spect scan to to see if she has lesions on the brain.

Mold is another possibility if you haven't investigated it. Ritchie Shoemaker is the contact there if this is the case.

I'm curious to know how she fares?

90 minute runs at 12 minute pace? Really, has no one suggested Diabetes. All of that could be explained by Diabetes and is she a big girl?

Heh, what is going on with this medical mystery? Any updates?

And, I was diagnosed with encephelomyelitis (sp?) in 2009 and am still dealing with its troubling effects. It's like I have a different personality in some ways now.

What is the update on this Doctor in the House?

She melts the candle and reshapes it into a key and uses the key to escape.

Doctor in the house wrote:

Pelvic exam showed nothing unusual. Just some tenderness that they want to check out with an ultrasound. Bloodtests on everything from STD to thydroid again come back negative.

She started a protein only diet and lost 10 lbs past 2 weeks.

At yet another holding pattern until the ultra sound.

Thanks for asking.

Good grief.

She is suffering from diagnosis, doctors, treatments, and a nutcase of a boyfriend.

To the OP:

Check the colon.

check for Lupus and Lyme disease

Not trolling....

She stll gets tired. Hasnt exercised in a while but is maintaining weight via dieting.

She tends to feel much better when off Gluten, but finds that hard to maintain. Tends to feel very swollen eating gluten.

She's pretty much given up on running at this point...

Body aches seemed to subside during summer, but with cold weather feeling sore.

Dr. Sexman wrote:

90 minute runs at 12 minute pace? Really, has no one suggested Diabetes. All of that could be explained by Diabetes and is she a big girl?

Nope.... Negative to tests twice.

She has gained weight but was 5'7" 128 when this startef.

some specific responses to the posters in this thread:

To those attributing the vignette to somatic disorder/depression: I wouldn't necessarily do that blindly without having seen the patient or reviewed the data. I've seen doctors get burned here and there by jumping to this conclusion. Of course, it is something to consider in a patient with multiple non-specific symptoms, psychiatric disease, and a benign exam/workup.

get away from them all: I share your skepticism of allopathic medicine, but sometimes this attitude will lead to missing a helpful diagnosis with effective allopathic treatments. For instance, it would be unfortunate if a patient like this went straight to a naturopath and ended up having flagrant hypothyroidism diagnosed years later. I think the opening poster is reasonable in helping his wife to obtain a thorough medical evaluation, Of course, if nothing is found, it may be a good idea to stop doctor shopping and start living your life.

ALS: don't be ridiculous

Sagarin: I don't think that the immunologic tests you are recommending are likely to be helpful. Your suggestion of a spect scan is silly. Naltrexone is an interesting idea. I have prescribed it a few times for fatigue.

AM MD: I have never seen a patient with fibromyalgia without psychological pathology. Although, that doesn't rule out an organic cause to the syndrome. Some other diseases with objective physical signs such as postural orthostatic tachycardia syndrome and myofascial pain syndrome also are highly associated with psychiatric comorbidity. Even patients with sickle cell anemia often have a "psychiatric flavor" in my experience. Pain drives people crazy, and crazy exacerbates pain. The number of people with unexplained medical syndromes does not seem to be decreasing with better medical technology. People have been researching irritable bowel syndrome for years to look for an organic cause with little success.

I would seriously find a doctor who specializes in environmental medicine and have blood work sent to a pathology/toxicology lab. Check the American Academy for Environmental Medicine for doctor/s in your state.

I was feeling pretty awful for a while...achy, tired, joint pain for no reason, not able to keep my weight steady, and running going down the drain. So one night I had a plate of pasta, which I hadn't had in a while. The next morning I sat on the toilet for probably 30 min pooping my brains out...but then it dawned on me: gluten. I have cut out most gluten and I'm feeling MUCH better. Been going about 2 months now. I still have a beer here and there and sometimes I just want a damn bagel, but 90% of the time I am gluten free.

Let me say that I do think I am just sensitive to gluten, not full on allergic. I prett much just eat meat, vegetables, fruit, and corn and rice based foods. I know it would be much harder if I was truly allergic to gluten.

I think she should really make a bigger effort to maintain gf eating. It helped me a lot.

I agree with Sagarin re mold but there could be other factors; food, fragrances (perfumes contain toxic chemicals), cleaning products, pesticides (often found in foods), etc. Find the right doctor who gets to the cause of symptoms and not just treating symptoms which most doctors are good at. Do your research and you'll find the right doc.

Here's the American Academy of Environmental Medicine.

http://www.aaemonline.org/AboutUS.html

I've met acquaintances that went to doctors for 5 - 10 years with medical problems and not one helped them. Finally, they found a doctor who specializes in environmental medicine and then the causes were found, whether it was toxic mold, chemical, etc. and treatments started. Sorry to say, but most doctors have no clue about toxic exposures, testings, or treatments.

Eyozhi Zuki wrote:

Here's the American Academy of Environmental Medicine.

http://www.aaemonline.org/AboutUS.html

I've met acquaintances that went to doctors for 5 - 10 years with medical problems and not one helped them. Finally, they found a doctor who specializes in environmental medicine and then the causes were found, whether it was toxic mold, chemical, etc. and treatments started. Sorry to say, but most doctors have no clue about toxic exposures, testings, or treatments.

Wouldn't the boyfriend have similar problems if there were some toxic exposure in the home serious enough to cause all these problems?

Some people gain weight, get aches, and find it difficult to exercise with age. People with hypochondriacal tendencies think that any change in their body is a result of pathology that can be fixed whether by fad diet (Dukan) or quackery (naturopaths) after allopathic medicine tells them there is nothing wrong with them. These people are great cash cows for the "alternative medicine" industry.