What should I ask Klimas for?

[PhoenixBurger]

I'm at the tail end of 14 months of mysterious symptoms. Much subdued to what most here have. Monthly bouts of unexplained fatigue and crawling sensations that would last about 7 days then disappear. Culminating at the 9 month mark with neurological problems setting in (muscle twitching all over my body, neuropathy, nerve pain, poor circulation, headaches, spine pain, calf spasicity, and exercise intolerance).

Absolutely zero lesions of any kind on MRI (Brain, Neck, Spine) - no MS
Negative EMG for neuromuscular atrophy - no ALS
Negative test results of every kind known to man.

Only abnormalities:
1) False positive lyme antibody (followed by neg WB, PCR, C6 Peptide)
2) Low testosterone: 340 (range 300-1100)
3) Low SED rate: 1
4) Low Estrogen: 1
6) Extremely low cholesterol (near 100)
7) High CD8 Activity with normal CD4
8) Slighly elevated Lymphs.
9) Positive CMV antibody - twice, yet Negative CMV PCR

As a result, doctors sent me home "healthy".
"CMV can't cause all of this, so its clearly in your head"

I am now at about month 14 and through my own research, have settled in on a regimen addressing the most likely candidates. Mitochondrial / DNA Damage / Dysfunction from Medications taken when this started, and a couple other things. My regimen has been whiddled down to:

1) Daily organic vegetable juicing 24oz greens, colors, etc.
2) Mitochondrial Supplements (ALA, RLA, CoQ, Carnitine, PQQ,etc)
3) Vitamin D maintained at roughly 55.
4) Dead Sea Salt Mineral Baths 4x a week for 20 minutes.
5) Gatorade (helps with twitching - while other mineral supps did nothing)
6) Physical Therapy - Exercise 3x a week
7) Exclusively Paleo diet - with Organic Potatoes for Carbs only.

I notice that when I am growing tired, the twitching and symptoms increase. So I do feel there's a significant element of improper energy production in my body (mitochondrial dysfunction).

In any case....

I have been waiting since November for an appointment with Klimas around May 1. I am terrified. Why? Because doctors have proven themselves to be utterly pointless. Useless. I've already done the "months wait" for another guy who wasted my entire visit telling me "its not the meds you took". Offered no solutions. No tests. And then talked trash about Klimas a little.

I do not want to wait 6 months for an appointment and get shoo'd out of there like I always do. I have absolutely no hope that Klimas (or Rey is who ill probably be seeing) will be any different than any other doctor. I don't have "traditional" CFS. I am not that extreme. I can operate for the most part normal if I stay on top of my regimen without any exceptions. My worst day is a burning, aching foot and calf, with muscle twitching all over my body and feeling crappy / less energetic. Im not like many of you who struggle to get out of bed, and can't function. So if she gives me a CFS questionnaire I am going to fail it and probably get sent home right?

Part of why I am worried about seeing Klimas: I am in Miami. Every neurologist and infectious disease doctor I have seen has been a former student of hers. And they all think im insane. One even told me this was all in my head, while telling me that Klimas can help if anyone can. If these are the products of Klimas then I have no hope with Klimas. She is going to laugh me out of the room and I will have wasted 6 months of my life waiting.

I want to present my situation to her (or Dr. Rey) in a manner which will motivate them to concern, and to act. I can't show up looking weak and miserable with black circles under my eyes. If i stay on my regimen, I will show up looking fit, and athletic and healthy. I refuse to take this without fighting it, and my regimen has taken me from 20% to 80%. But I want to be at 100%. If I walk in there at 80% i am not going to have any clinical manifestations for her to see.

I already had one dumb doctor say: "You're the picture of perfect health"
How do you know that without lifting a finger to check?

Another one said: "Wow you're a lot younger than the patients I normally see"
And? Idiot ... (im almost 39)

They don't know that I've spent the last 6 months house-bound simply because I feel like crap, tired, or walk around any given day with stabbing nerve pain, or burning/freezing foot, or the muscle on the temple of my head is twitching like crazy, and I can't concentrate. Can't work. Can't function socially. Haven't gone on a date since last August. Something is definitely wrong, and its affecting my lifestyle, but I can't seem to crank out any abnormal bloodwork or fall over dead in their office like they want me to. So "its all in my head".

I want complete immune testing, but I fear she wont give it to me. I want complete infection testing, but I fear she wont do it. I feel like I need to come up with a speech, and rehearse it with emotion and intensity .... because any time I present meekly to a doctor, they disrespect me and send me home "healthy". Im sick of it, and I hate that I am so worried about the appointment. I should be excited and glad to finally be helped, but I know how this is going to go. It always goes this way.

Suggestions?

 

[Tammy]

Could you carify something...........you mentioned you are at 80%?..........but then the next paragraph you mention that you have been bedbound for the last 6 months? You are worrying alot right now.............understandable but don't get ahead of yourself as to what you think might happen. There are alot of "what ifs" that you are going over and over in your head. You still don't feel good and you are wanting more answers.........one step at a time.I think that Klimas and Rey know it isn't all in our heads but If your expererience with them doesn't pan out the way you think it should..............go on to the next step.........plan B. And if you continue to do the "what if" merry go round.......try positive what ifs! What if it turns out better than I thought! Hugs to you.........I know it isn't easy.

 

[SOC]

You can relax. You are not going to have to explain yourself to Dr Rey (or Dr Klimas). They are not going to laugh you out of the room. They know lots of us don't look sick and have normal standard blood tests. That doesn't mean we aren't sick.

You'll have a whole bunch of forms to fill out about symptoms and the like. (They usually send that several weeks in advance so you have time to fill it out at your own pace). The doc will go over that info and order whatever tests seem warranted based on your info. Most people get immune testing and testing for the usual culprit infections, so I wouldn't worry about that.

You'll get some general recommendations for supplements and lifestyle changes that help most people so you have something to take away with you that day. Then you'll have to wait for the results of tests to see what treatment is needed. The immune tests can take 6-8 weeks, but other tests will come in sooner. The hardest part is waiting for the tests.

While there's no guarantee that Dr Rey can help you, you don't have to worry that she'll treat you with the disrespect we often get from doctors. Don't worry, you don't need to motivate her to be concerned, or present your case. No convincing necessary. Really. It's very different from your standard doctor appt.

If it helps any, neither my daughter nor I look at all sick. Dr Rey in no way suggested that meant we weren't sick. My daughter has been functioning fully as long as she's seen Dr Rey. That didn't stop Dr Rey from fully investigating her situation including immune and virus testing. Dr Rey found some serious abnormalities for which she is currently treating my daughter.

I really think you don't have to worry.

 

[PhoenixBurger]

you mentioned you are at 80%?..........but then the next paragraph you mention that you have been bedbound for the last 6 months?

I've spent the last 6 months house-bound simply because I feel like crap, tired, or walk around any given day with stabbing nerve pain, or burning/freezing foot, or twitching like crazy. Can't function socially. Haven't gone on a date since last August.

Housebound in a Social sense. I just don't feel very good and the twitching / small fiber neuropathy is at least a distraction, and at most a total discouragement from getting out and living life. The fatigue can vary from putting me at 40% energy to 80% energy. I've had a couple days of 100%. But still this is sufficient to take the wind out of my sails as far as motivation to hit the gym hard, go on first dates, and make first impressions in a highly competitive singles world. I work from home, so aside from trips to the grocery, I don't do much outside the house. My 80% days are far more numerous since I started my regimen, and Im working to make them the norm. But can very easily end back up at 20% if I deviate from the regimen. Either way, if you plopped me down in front of a doctor, they would look at me and think nothing was wrong.

Thanks for the replies.

 

[Sushi]

. Either way, if you plopped me down in front of a doctor, they would look at me and think nothing was wrong....

I think many of us, maybe even the majority, "look fine." There is even a website entitled something like, "But you don't look sick!" Doctors who specialize in ME/CFS are used to this. A while back we even had a thread about looking younger than we are--many of us do. But this won't phase a doctor who is knowlegeable about this condition.

Sushi

 

[GcMAF Australia]

Look at possible Lyme disease infection

 

[maddietod]

Look at possible Lyme disease infection

Yes, they don't automatically check for Lyme, because they assume that all such possible causes of CFS-like symptoms have been ruled out by other doctors.

 

[MeSci]

My regimen has been whiddled down to:

1) Daily organic vegetable juicing 24oz greens, colors, etc.
2) Mitochondrial Supplements (ALA, RLA, CoQ, Carnitine, PQQ,etc)
3) Vitamin D maintained at roughly 55.
4) Dead Sea Salt Mineral Baths 4x a week for 20 minutes.
5) Gatorade (helps with twitching - while other mineral supps did nothing)
6) Physical Therapy - Exercise 3x a week
7) Exclusively Paleo diet - with Organic Potatoes for Carbs only.

I don't have any direct answers to your main question, but would question the wisdom of consuming any sugary drink, or doing any kind of regular deliberate formal exercise. You must never exert yourself unless you are feeling that your body is up to it. Both over-exertion and excessive carb consumption could exacerbate and perpetuate the illness. You don't really need to consume anything specifically for carbs - your body will break other foods down to glucose anyway, and there are plenty of carbs in fruit and veg.

 

[PhoenixBurger]

Look at possible Lyme disease infection

Yes, they don't automatically check for Lyme, because they assume that all such possible causes of CFS-like symptoms have been ruled out by other doctors.

madietodd GcMAF Australia
Did you two see above about Lyme testing?

question the wisdom of consuming any sugary drink, or doing any kind of regular deliberate formal exercise

As mentioned, Gatorade is the only thing which seems to alleviate the bodywide muscle twitching. Brings it down by about 95%. Nothing else seems to help with that. As for the exercise, its regular, but its never when I am not ready or strong enough.

You don't really need to consume anything specifically for carbs - your body will break other foods down to glucose anyway, and there are plenty of carbs in fruit and veg.

Not enough for me. I have tried that route and it does not work. Within 2-3 days I am weak and miserable, on protein and my veggie juicing. Its wholly insufficient for energy production. The Paleo allows for potatoes, so I eat 2 of those a day. The Gatorade provides necessary things for mitochondrial function and proper muscle firing when mitochondria are failing to produce proper ATP. I dont like drinking Gatorade, but its become necessary. Without it, things get worse. And without the potatoes, my energy takes a skydive.