Help my girlfriend solve medical mystery

nameless faceless sufferer wrote:

It sounds like you are very knowledgeable about CFS, I should email you sometime and get some tips from you.

Why would you want to get CFS?

I don't believe CFS is a real disease. It's simply psychosomatic.

My condolences to you as well. Everything you've written is absolutely true, but many nurses and doctors are starting to go down. Oncologist Dr. Snyderman developed CFS and then cancer 40 years later, beginning his odyssey into the world of retroviruses and anti-retroviral treatment. I've gotten much better with the help of a brilliant doctor who isn't in infectious disease, oncology, endocrinology, or cardiology who would be scoffed at on these boards for his unorthodox treatment, much of it not "peer-reviewed." I've also sought treatment from abroad. But I am about 70% of my former self on my best day. Jamie-Decker Jones' blog is insightful as well as she tirelessly pursues a cause and pushes political buttons, only because she's gotten some relief from the malady through self-treatment after many doctors almost put the nail in her coffin.

I studied microbiology, immunology, and genetics myself as an undergrad and was afflicted as I was getting ready to apply to med school. But I didn't totally go down until several years later as I progressively made the illness worse. My now wife caught it from me, but thank God she recovered her life within four years. Amazing how I could telepathically give it to her no? I would be happy to contact you if you would be so kind as to leave your email or a rarely used email account here.

littlechica911 wrote:

I don't believe CFS is a real disease. It's simply psychosomatic.

With tinges of medicasomatic and hypochondria.

IT is moodybiker1@cs.com. Contact me at your convenience. Thank You.

Well... Test came back as negative for Lyme's Disease. Still waiting on tests they did for mono.

Doctor in the house wrote:

Well... Test came back as negative for Lyme's Disease. Still waiting on tests they did for mono.

Earlier, I mentioned ehrlichiosis, another tick borne disease like Lyme's disease. Your doctor did not test for ehrlichiosis because the growing the culture from the blood sample takes about two weeks. You could not have gotten test results back for ehrlichiosis that quickly.

Everyone keeps saying mono... perhaps because is sounds so innocuous, but the test is really for Epstein Barr Virus (EBV) and mono is only one manifestation of EBV. The symptoms of EBV vary widely and it can be acute (a one-time occurrence) or chronic.

Chronic EBV can be nasty. Chronic EBV is linked to chronic fatigue syndrome, for example. I have chronic EBV, but for me, it's pretty mild. It plays havoc with my training and I have many of the symptoms of your wife, but as I said, it's not as severe. My doc thinks I've probably had it for years.

Op,

How is her diet? Particularly, is she getting at least 1.5-2x the recommended daily value of each of the electrolytes? How many grams of protein per day? Which proteins exactly?

Inadequate electrolytes can lead to heart flutters and other muscular problems. Inadequate protein will ruin your immune system, your repair and recovery system, and will screw up hormone balance and hormone production. Many of her symptoms sound like they could be a diet problem.

Does she have amalgam fillings ? The mercury in it can make you sick like hell!!

I was deadly sick after going to the dentist several times 3 years ago ( it all started after a dental cleaning, one little piece of amalgam broke off)... chronic fever ( on and off)/ constant pain/bad sleeping/ bad memory/ constantly tired/ sleeping more than 14 hours a day/started to get allergic to several things and more .....

Was also running with very bad recovery or none at all !

No lyme disease/ no lupus/ nothing wrong in my blood results/ every single test from lyme diseas to auto-immune was negative !

Doctors said: fibro/chronic fatigue!

Ended up almost killing the doctors because I couldn't accept it! ( have seen enough of them for at least another 10 years! ( they said I was crazy!!)

After removing all the dental fillings and replacing them... It took me almost 2 years of recovery but now I am running again ( not as fast as before but I am happy I can do some training again! )

Did a complete Detox and even today I can still feel some problems ( specially after and interval-training)

forgot to tell: my glands were swollen all the time, I went 10 times to the doctor in less than 4 months with "doctors explanation": an atypical throat infection??? live with it ... took a bucket of antibiotics, nothing helped !

Well hope it helps and hope you find a doctor who believes you ...

so much quackary in this thread

gasdfgfsdasd wrote:

so much quackary in this thread

And yet... real doctors have been useless.

Not sure why she's thinking Fibromyalgia is wrong. She's got all the symptoms of that (which are varied).Until someone comes up with something better, I say Fibromyalgia is it. She's at the right age for that to start too.The GOOD thing about it is that it is ONLY a pain syndrome. The body sustains no damage.She can TRY Vitamin D3 (has to be D3) supplements to see if that will help, but then there are medicines. Lyrica is the newest of the group, but her doctor may want to try Gabapentin or Cymbalta. They may also give her sleep medication.I really think Fibromyalgia is it.

voiceofreason wrote:

This sounds like classic lymes disease. Go to web md and look it up. Swollen glands, fatigue, heart palpitations, skin sensitivity...don't let the absence of a rash throw you or her not remembering being bit.

Yeah, Lyme disease could be it too.

Towson exile wrote:

Crohn's? It's different than celiac and can certainly cause fatigue and weight gain

Crohn's usually causes weight LOSS, not gain. Also, she would have intestinal distress of some sort.

Ha, Flag, you'd make a great doctor. It's ONLY pain.

Fibromyalgia can be a manifestation of or overlapping with ME/CFS. Chronic remitting/relapsing EBV can generally be managed with Valtrex and adequate rest, though Wormwood and artesunate are very effective if taken properly. If you keep pushing though, you risk real harm. On artesunate:

http://cid.oxfordjournals.org/content/47/6/804.full

The post about mercury is absolutely correct. Mercury can be lethal and wreak havoc in the body via Fenton chemistry and it blocks glutathione peroxidase. The real quackery on here is coming from the docs who haven't a clue about managing chronic disease and just want to pedal drugs to see if they work. Be very careful with LLMDs. Read Jamie Decker-Jones' blog on lyme docs and read about on Terry Wahls curing her own MS.

nameless faceless sufferer, I will get a hold of you when I can, probably after Memorial Day. I'll keep wearing the tinfoil hat until then. It's served me well in the allopathic maze. Thanks.

Not sure about the age comment either. A lot of, people, particularly women, get it much earlier. My sister developed it at 25, though I think she has ME/CFS. Hormonal changes can definitely evoke illness though too, especially if a virus with a gluccorticoid receptor in its promoter region is involved.

Talk about taking drugs they don't need and being taken advantage of - aren't you advocating taking dangerous retroviral drugs despite no evidence that CFS is caused by a virus?

Sagarin wrote:

The real quackery on here is coming from the docs who haven't a clue about managing chronic disease and just want to pedal drugs to see if they work. Be very careful with LLMDs. Read Jamie Decker-Jones' blog on lyme docs and read about on Terry Wahls curing her own MS.

nameless faceless sufferer, I will get a hold of you when I can, probably after Memorial Day. I'll keep wearing the tinfoil hat until then. It's served me well in the allopathic maze. Thanks.