Help my girlfriend solve medical mystery

Sagarin wrote:

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.

True. MOST women start with symptoms in their 40s though.

No, I'm not advocating them at all. I don't take them. But many with CFS have benefited from them, including doctors who suffer from the disease (they've chronicled their journey), which could be a tell. We need clinical studies. I don't like Valtrex either, but it can be used to manage early stage and relapsing mono (this and Valcyte is a favorite of infectious disease doc Martin Lerner in MI, who claims he suffered from CFS and cured it, but I don't think he sees the whole picture, and he has failed many). But alternatives can work as well. I've been fortunate enough to have access to unorthodox therapies that have raised my NK and CD4 counts, as well as damped down inflammation.

Sometimes drugs are needed as a last-ditch measure, in acute, deadly disease, or in tandem with alternative therapies. The only "drug" which I've ever really benefited from is low dose naltrexone, which is fairly innocuous. Everything else has made me feel like utter crap. The only other drugs I take are a couple of sleep meds, which, frankly, are incredibly difficult for me to wean and I'm a bit pissed at the doctor who originally put me on them. I'm attempting to wean them.

off the leash wrote:

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

Silver lining, brother. Many people would worry about damage being done to their bodies, so while it's no fun to be in pain constantly, it IS comforting to patients to know that their bodies are not deteriorating as a result of Fibromyalgia.

AM MD wrote:

As to allopathic MDs not managing chronic diseases - that is most of what we do - heart disease, htn, diabetes etc. And we have to manage it in a population that takes little personal responsibility for their well being - obesity, poor diet, general laziness etc (and somehow that is the doc's fault? Like people don't know mcdonalds is bad for you). There is far more chronic disease out there and complex co-morbid medical problems out there now as opposed to 25 yrs ago - people are living longer, diagnosis and treatment options are better, so pts are older and tend to accumulate problems. The average hospitalized pt is way more complex now than in yrs past.

Totally agree with this too. That's why I pointed out Terry Wahls. The Budwig Protocol is another one. Many patients can "cure" themselves before they reach the tipping point. Unfortunately, there's nothing in the insurance system that incentivizes them to do this, nationalized care would be an utter cost disaster from this standpoint, nobody's going after the farm lobbies, who get to put high fructose corn syrup and hydrogenated soybean oil in our food, and the Food and Death Administration does so very little about our processed, chemicalized food problem. We ship coal to China, who smelts it, sends it up in plumes, and drops mercury all over our oceans and crops. Brilliant.

Sagarin,The reason for my questions (and the reason for my little bit of knowledge here) is that my wife has Fibromyalgia - about 2 years diagnosed now.Question #1 is this - in your experience and opinion, how would a person know if they should be more properly diagnosed with Fibromyalgia as opposed to myalgic encephalomyelitis?Question #2 is this - Some information on the web states that myalgic encephalomyelitis is another term for Chronic Fatigue Syndrome (CFS), but it appears you are talking of them as two different things. Can you clarify?Thanks!

This will be my last post and then I need to go. As to question #1, it's vague and ambiguous, but they seem to be two sides of the same coin. Fibromyalgia generally manifests more as pain, with definite trigger points, whereas CFS/ME manifests more as utter, hellish fatigue, neurocognitive malaise and fog, tender glands, orthostatic intolerance, and insomnia as the hypothalamus is affected. Pain is involved for most, but not all patients, and probably not to the degree as in fibromyalgia. I'm not a fibromyalgia expert as that is not my problem, and I really don't have pain besides old running injuries, though I used to get chronic headaches that have abated after getting proper treatment.

Your wife is an immunologist no? She should drill into some of the blogs I put up here. Lots of good scientific research in there. As to question #2, They're the same thing, but most people in the USA know the illness as the unfortunately named waste basket Chronic Fatigue Syndrome (or Chronic Fatigue Immune Dysfunction Syndrome as there is definite immune dysregulation). The rest of the International community generally recognizes it more correctly as Myalgic Encephalomyelitis, generally meaning "pain" and neuroinflammation.

I'm sorry for your wife. Get her on a pristine diet and have her try low dose naltrexone, moving up very, very gradually. It's a miracle drug for some. Make sure the filler isn't calcium, as it will slow the release variable. Check out the LDN homepage and look at some patient blogs about it. The comment from the doctor above about Fibromyalgia being reserved for head cases was very unfortunate.

Time for one more. Post-exertional malaise is the HALLMARK of ME/CFS. Your wife and the OPs may both have ME/CFS if they are manifesting these other symptoms, as well as pain. If it's merely pain, then it's probably fibromyalgia, which may merely be a subset of CFS/ME or a distinct classification. Chronic lyme merely obfuscates the picture further. Even GWI and atypical MS. They all have a degree of overlap.

Sorry, I fibbed. My sister's problem started as Fibromyalgia but evolved into ME/CFS. That's why I think they may be part of the same illness process. As I said, it's ambiguous. She treated herself pretty badly in the early years, and so did the allopathic morons, one of them deliberately throwing her into reverse menopause. How's that for a "well-intentioned" endocrinologist? Now she's on all kinds of drugs (thyroid, adrenal, pain, etc) and swirling the drain. She should've detoxed and paid attention to diet years ago as I did, but she wouldn't listen. But, it's pretty rare to get ME/CFS later in life. Not impossible, but not common. Over and out.

Flagpole wrote:

off the leash wrote:

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

Silver lining, brother. Many people would worry about damage being done to their bodies, so while it's no fun to be in pain constantly, it IS comforting to patients to know that their bodies are not deteriorating as a result of Fibromyalgia.

I don't understand how that works.

If it is certain that nobody knows what causes it, how can they be certain that it is not causing damage? Pain causes stress, no? Stress causes damage. More stress causes more pain. Pain is the absolute opposite of health.

Thanks for the info Sagarin. She's tried a couple meds so far with bad side effects, so Lyrica might be the next one, but I'll have her talk to her doctor about naltrexone too.Yes, she is an immunologist.

Thanks to everyone for the comments. I'll have her look into ME/CFS. Like the doctor above we have been skeptical of Fibromyalgia because of the lack of specific test. She was diagnosed by a specialist who took her history ans squeezed her arms. It may be that Fibromyalgia has a mental component, but she is in a pretty good spot in her life with regards to family and career, so its really just the health issues.The Lyme's test was negative. Waiting on some mono tests. We'll explore ME and EBV.Not sure about her fillings, we'll check that.We've got a pretty healthy diet and she drinks little alcohol.More details as they become available.

Why are you taking naltrexone? Are you a drug addict or taking IFN-α?

It's LOW DOSE naltrexone, which has a completely different effect. It blocks the opiate receptors for an optimal amount of time so that endorphins naturally increase in the body and brain, which can help with immunomodulation, pain, energy, and sleep in my case (though it tends to cause insomnia at first so one has to go slow). It's been used with a wide degree of success in illnesses ranging from MS to cancer to fibromyalgia to AIDS to Crohn's. 4.5 mg is the maximum optimal dose, but it depends on weight, compounder, etc. For many, that is too much. But even at 4.5 mg, it's extremely benign. I don't like drugs. I don't take them unless I absolutely have too. LDN gives me very vivid dreams, and I hope to wean other meds with it as others have been able to.

Lots of good info here:

http://www.lowdosenaltrexone.org/

*opioid... friggin Mac auto-edit. I need to turn this off.

I'm bumping this thread. Is there some updated information and more recent doctor visits?

Has her condition changed in any way?

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.

This has to be frustrating as nothing is revealing itself.

You're being diligent though. I know it feels better just taking some kind of action and methodically checking every possibility off the list.

Keep up the good fight. Are your gf's spirits upbeat or is she confused and troubled by all this? Is she able to go for walks and get outside at all?

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.

Protein only? How much electrolytes is she getting on that diet???

LYME'S DISEASE

get tested...more than once.