Might go to Dr. Klimas' office

[Marg]

Hi Madie,

Glad you had a good trip. I love the clinic there, unike any doctor's office I have ever been in. I like that it is small. I am not sure what will happen when the other place opens. Dr. Rey. talk about that? Since I started there and all records are there wonder if people like that wll stay. I met Dr. Rey when we were there and have spoken with her by phone. I liked her too. I have been impressed each time an felt good about it.

I will be interested to hear of your sleep protocol and how it goes. I still have cycles of not sleeping no matter what.

Marg

 

[maddietod]

LOL - I hope I'm not getting this backwards, but I think she said she'll be staying in this office. But we had a discussion of how much nicer the Ft Lauderdale airport is so........Oh, wait. She'll be up in this office 2-3 days a week. I don't know when the other office will be done.

I've looked back at the paper, and it says "Natural Killer Cell Diet." But she specifically said to try it for sleep. And it's not a diet at all - no foods on it.

I love the office. Little and crowded and friendly - they all obviously enjoy working together.

 

[Seven7]

1)Can you pls forward me the NK cell diet? if is not diet what is it?
2)Can you elaborate on your BP? does it go low? Mine now is going high and low sometimes, I don't know what to make of it.

 

[SOC]

1)Can you pls forward me the NK cell diet? if is not diet what is it?
2)Can you elaborate on your BP? does it go low? Mine now is going high and low sometimes, I don't know what to make of it.

Since I have my NK cell diet paper literally right at hand, thought I'd jump in here and save Madie having to dig it out.
NATURAL KILLER CELL DIET
CoQ10 -- work up from 50mg to 200mg over 4 weeks
Omega 3 -- work up from 1000mg to 4000 mg over 4 weeks
Vit C -- work up from 500mg to 2000mg over 4 weeks
Vit D -- depends on current level (I'm low, so have been on 3000 IU daily for 6 mo now)
Vit B12 -- depends on current level

BTW, I don't have NK cell deficiency, but I was given this "diet", too.

 

[heapsreal]

Since I have my NK cell diet paper literally right at hand, thought I'd jump in here and save Madie having to dig it out.
NATURAL KILLER CELL DIET
CoQ10 -- work up from 50mg to 200mg over 4 weeks
Omega 3 -- work up from 1000mg to 4000 mg over 4 weeks
Vit C -- work up from 500mg to 2000mg over 4 weeks
Vit D -- depends on current level (I'm low, so have been on 3000 IU daily for 6 mo now)
Vit B12 -- depends on current level

BTW, I don't have NK cell deficiency, but I was given this "diet", too.

Im on the NK cell diet and dint even know it,lol

 

[maddietod]

The drop in systolic pressure was minor, but the point is that it should go up. Diastolic went up, usually about 20 points, and she didn't talk about that part.

I did test my BP recently during a day when I felt particularly crashy, and systolic ranged between 99 and 103.

I started pushing water right before coming down here, and the trip was much easier on me than I expected. I'm now also adding more salt, and it already feels like this is one piece of my puzzle that I can fix.

So maybe I'll feel better enough to start driving beyond 20 minutes...........but not dare unless there's a bathroom every half hour.

 

[Seven7]

trick: when I am not close to a bathroom, I use only the electrolyte drink (pedialyte) because I pee the water much faster.

 

[maddietod]

Very interesting. I drank a lot of water this morning before my flight, and I took potassium and salted my food heavily [I take magnesium at night]. And I had no urgency to pee at all.

 

[Sushi]

The drop in systolic pressure was minor, but the point is that it should go up. Diastolic went up, usually about 20 points, and she didn't talk about that part.

I did test my BP recently during a day when I felt particularly crashy, and systolic ranged between 99 and 103.

I started pushing water right before coming down here, and the trip was much easier on me than I expected. I'm now also adding more salt, and it already feels like this is one piece of my puzzle that I can fix.

So maybe I'll feel better enough to start driving beyond 20 minutes...........but not dare unless there's a bathroom every half hour.

After I am standing for a while (or if I have overexerted) my systolic goes down and my diastolic goes up. The difference between the two is very significant.

Sushi

 

[maddietod]

After I am standing for a while (or if I have overexerted) my systolic goes down and my diastolic goes up. The difference between the two is very significant.

Sushi

I'll keep track of both, then. By "difference" do you mean one minus the other? Like there's a number that's a red flag?

 

[Sushi]

I'll keep track of both, then. By "difference" do you mean one minus the other? Like there's a number that's a red flag?

Yes, there is a "red flag" number (systolic - diastolic) but of course I don't remember it! It is called the pulse pressure. I just know I tested in the red flag zone with an 8! (dead? ) That was after half an hour on a Tilt Table Test.

Sushi

 

[maddietod]

I applaud your resurrection!

A pulse pressure is considered abnormally low if it is less than 25% of the systolic value. (Wikipedia)

 

[SOC]

I applaud your resurrection!

A pulse pressure is considered abnormally low if it is less than 25% of the systolic value. (Wikipedia)

Also, from Dr Bell's Simple Test for Orthostatic Intolerance here: http://phoenixrising.me/treating-cf...hostatic-intolerance-chronic-fatigue-syndrome

Indications of orthostatic intolerance

• Orthostatic systolic hypotension (low blood pressure): fall in systolic blood pressure of 20 mmHg or more
• Orthostatic diastolic hypotension (low blood pressure): fall in diastolic BP of 10 mm Hg or more.
• Orthostatic diastolic hypertension (high blood pressure): rise in diastolic BP to 98 mm Hg or higher
• Orthostatic narrowing of pulse pressure: reduction in pulse pressure to 18 mm Hg or lower.
• Orthostatic postural tachycardia (increased heart rate): increase in heart rate of 28 bpm or to greater than 110 b/min.

 

[Marg]

Have you been going there a while or as a new patient were you able to see Klimas rather than Rey? I was under the impression Dr. Klimas doesn't see new patients any more? I'm interested in that stomach thing, I wonder if I have something like that. What symptoms did you have that alerted you to possibly having that, was it just the methylation not working well?

I have always seen Dr. Klimas. I was able to get in 3 weeks because the new clinic had just opened. I have been going once a year for three years, well twice the first year..wanted my results in person. I saw her May 23 this year.

I don't know what will happen now..I think Rey is very good as well. Ft.Lauderdale is a little closer..don't know how it will all work and what doctors will be there. I have a feeling Dr.Klimas will be busy running the place but around. There is the training of doctors and the research lab. What an undertaking!

I am going to need a phone consult, started having a lot of GI issues with Acyclovir. Dr. Klimas suggested that for me, it is the least toxic so she said. I have IBS but was doing fine, it is back and had some surprise diarrhea. When I was there and examined I had no GI pain and now I am sure there is inflammation.

I am wondering if this is something I need to tough out or could the dose be lowered. It is 800mg 2x. Anyone any ideas..Heaps?

I am not sure if I posted this but I had a stool test to determine the kind of bacteria. It came back parasites. Parasites harbor bacteria and I think viruses too (not sure of that). I am not sure which way to go on that. Rich told me about an herbal may try it first.. Dr. Rey did look at that test whne I faxed it and thought the the drugs too toxic but did not make a call. I was tested twice when I was sick in the 90's and nothing was found. So, were they missed or what. The test showed the viruses in the small intestine.

 

[Marg]

Hey Marg,

Thanks for your detailed answer. What was the stool test you got? There's so many different ones, and I'm not sure which ones are accurate.

Oh, I did post it was from Metemetrix. If you get it through them and not Direct Lab insurance will pay.

 

[SOC]

1)Can you pls forward me the NK cell diet? if is not diet what is it?
2)Can you elaborate on your BP? does it go low? Mine now is going high and low sometimes, I don't know what to make of it.

My BP tends to be all over the place. Some days it's high, some it's low. I'm not sure what to make of it, either. Next week I'm pulling everything together so that I can be very consistent on when I take my fluids, electrolytes, and medicines and see if I can get a more consistent BP.

I take my BP sitting upright after a few (or more) minutes rest. Does anyone take it differently -- standing, laying down, etc?

I'm still trying to sort out the HR/BP/POTS thing and how best to manage it. I suspect it may be the next big area where I can get a significant quality of life improvement.

 

[Marg]

Marg: I am also curious on your amino acid test and stool. Can please you tell us where and how to order and the name???

Ty,
7

The test was Ion Panel with 40 amino acids. it was expensive and insurance does not pay for that one. I can say it was worth it. It was from Metametrix. It was 18 pages. with line graphs of values..neat! I think I said before Dr. Klimas was crazy about it.

 

[Marg]

I just got a call from Dr. Rey (telling me not to do a sleep study before my visit). She said that Hannah is no longer with them, and has not been there for over a month, and I should stop using that email address (info@cfsclinic.com).

She said I should call the office - 305-595-4300 - if I have any further questions.

Also, I received all of the questionnaires in an email. That email said to send my completed forms back to that address (nsumedicalcenter@nova.edu), which I did. Dr. Rey said it's much safer to make copies and bring them with me to my appointment.

For people preparing for their first appointment, I'd advise printing the forms and then completing them. They're a pain to do on the computer.

 

[Marg]

I'll email them every day, then. Hannah didn't respond to 2 of my emails (yes, while she was still there), so their system maybe isn't well organized. I could also call my (new) doctor here and see what she says.

I am not crazy about this "off site" answering service, have you experienced that Madie? There was calling about my faxes, they left here but they claim they did not get them. Dr. Rey called and must have stood by the machine, she got it. Hannah was running a very tight ship until the last so I bet a while before the ducks are in a row. I am trying to get my Clonidine Patch script. My pharmicist got a fax that it had not been autherized, well duh ask the doctor, it is all in my files. Another fax was fired off today nothing yet. If nothing tomrrow I will e Dr. Rey. I do not have anything after Monday. Dr. Klimas said not to stop it abruptly.

 

[Marg]

LOL - I hope I'm not getting this backwards, but I think she said she'll be staying in this office. But we had a discussion of how much nicer the Ft Lauderdale airport is so........Oh, wait. She'll be up in this office 2-3 days a week. I don't know when the other office will be done.

I've looked back at the paper, and it says "Natural Killer Cell Diet." But she specifically said to try it for sleep. And it's not a diet at all - no foods on it.

I love the office. Little and crowded and friendly - they all obviously enjoy working together.

Someone put that on, think SOC on this thread. I am already taking all the items but wonder about dosage.