My experience with Klimas

Kati

Patient in training
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I got just a couple weeks worth of imunovir. Now I am on inosine, smuggled from the US. (Nancy had to laugh about how ridiculous that some of us canadians have to smuggle inosine, a perfectly legal supplement from the US)
I take the same dosage as Hope.

Success for me would be increase in NK Cells function. 4.6% was my latest value.
 

glenp

"and this too shall pass"
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Thank you for posting all of the information you got from Dr. Klimas office. This is so very helpful for those who are not able to see a specialist. Its important to have a blood pressure monitor and monitor your bp and heart rate while resting, sitting, and standing and after standing for a period of time, so that you can see these differences. Most physicians are not paid to take the time to do this testing. You can google "poor mans tilt table testing' Many are not aware of this and given medications according to the reading at the doctors office which can actually be harmful to us.
 
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Sorry not to have updated this in so long. My follow-up with Klimas had a ton of information, but none of it directly affected my treatment. I did much better for a while after my appointment with her, primarily because of the electrolytes, but this sumer has been pretty awful again.

I think I've figured out why: I'm not managing to control my
orthostatic intolerance. My guess is that my kidneys have gotten
more efficient at eliminating sodium from my system, so that the
quantity of electrolytes that was sufficient before is no longer. It's
funny, though, because I've felt like electrolytes weren't helping the
way they once were. It may be that that's just because I haven't been
drinking enough.

To begin to test all this, I ran my own, homegrown tilt table test. I
lay down for ten minutes and took my blood pressure and heart rate.
Then I stood up, standing as still as I could, and took my blood
pressure and heart rate (except that I stupidly forgot the heart rate)
every five minutes. I did that this afternoon, and from the morning
onward, I'd had about 1/4 teaspoon salt and 1/4 teaspoon potassium in
my breakfast smoothie, two glasses of Nuun, and two salt tablets (each
containing 8% of the US RDA of sodium). After 22 minutes, my blood
pressure had dropped to 80/60 and I stopped because I felt like I was
going to throw up. (That was a better result, though, than when I did
the tilt table test with Klimas, when after 8 minutes I was at 80/52.)

Next I drank two more glasses of Nuun, and after 20 minutes I repeated
the test. This time I passed, with my blood pressure holding steady at
105/75.

So it's possible that if I simply drink still more electrolytes, I'd
be feeling a lot better. Of course, there's a question of how much I
can make myself drink, and it seems like I'd already consumed a fair
amount this morning. Also, if my hypothesis is correct, then if I
increase my electrolyte intake, my kidneys will likely just get more
efficient still, and I'll start feeling like crap again.

So I have a four-fold plan. One is that I'm going to
generally push the electrolytes, planning to consume at least four
glasses of Nuun, plus my usual salt in my smoothie and salt tables.
Two is that I'll monitor my BP frequently, and anytime I'm feeling
crummy and my blood pressure is at 100 or below on top or 70 or below
on bottom, I'll down some more Nuun. Three is that I'm going to repeat
my tilt table test at other times of day. Mid to late afternoon is
when I'm generally feeling my best. This morning, I felt truly horrible
in a low-blood-pressure kind of way, and that was right after I'd
consumed a fair quantity of electrolytes, so I'm dubious but curious
whether more electrolytes could have done the job.

And that raises number four: I'd like to figure out
what Klimas's next treatment option is likely to be
and then get my PCP to prescribe it, since it takes
so long to get an actual appointment with Klimas. I
figure that on Monday, I'll call her office and see if I
can wrangle the information out of them, but I was
also hoping that maybe someone here who has
worked with her could tell me. So, any suggestions?

By the way, one comment about her for people
considering working with her: Her office is incredibly
disorganized. I've had to request everything multiple
times. So be persistent.

One of my conclusions is that I should have had a
follow-up appointment with her much sooner.
 

ahimsa

ahimsa_pdx on twitter
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Hi girlwiththedog,

Have you tried any prescription medications to try to manage the orthostatic intolerance? I skimmed your first post but didn't see any mention (maybe I missed it) of drugs like midodrine, fludrocortisone, etc. and whether you found them helpful. Or maybe you have not yet tried them?

Just curious - I wasn't able to read that first post slowly/carefully right now (gotta log off soon) so I hope I'm not asking too many questions!
 
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The only prescription med I've tried so far is Atenolol -- 12.5 mg twice a day. I also wonder whether that could be making it worse.

It now seems like some kind of med is in order. Part of what I'm curious about is if anyone knows what med Klimas tends to start with.
 

ahimsa

ahimsa_pdx on twitter
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The only prescription med I've tried so far is Atenolol -- 12.5 mg twice a day. I also wonder whether that could be making it worse.
That seems possible to me. I know someone who tried Atenolol (Tenormin). She had to titrate down to a very low dosage before she got to a place where it helped keep her heart rate down without making her feel worse. Since she couldn't break the tablets down small enough she actually went to some sort of liquid form and used a set amount of drops. This was years ago so I don't remember all the details.

I never tried this drug because my biggest problem is dropping blood pressure, not high heart rate (although I get that, too). There is a warning about taking this drug if you have low blood pressure (see http://www.drugs.com/atenolol.html) but since blood pressure issues are so complicated in folks with NMH or POTS it may not always apply to every patient.

It now seems like some kind of med is in order. Part of what I'm curious about is if anyone knows what med Klimas tends to start with.
I hope someone here is able to answer your questions! I don't know anything about what meds Klimas uses for her patients.
 

anniekim

Senior Member
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Hi the girlwiththedog. In your first post on here after seeing Klimas, you said she wanted you to try Ldn again. May I ask whether you did go back on it and if so, how are you faring on it? Many thanks
 

Ocean

Senior Member
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Have you had any follow-ups with Klimas? Are you noticing improvement in your condition from her treatment, now that it's been a while since you went to see her? Also, how long were your initial visits with her? Thank you!
 
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Does anyone have the number for me to contact Nancy Klimas. I have had very severe CFS/ME in the uk with no success and would really like to get in touch with her. Adam
 

Sushi

Moderation Resource Albuquerque
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Does anyone have the number for me to contact Nancy Klimas.
I don't believe that Dr. Klimas is taking new patients, at least not new adult patients. The new patients seem to go to Dr. Vera. There are several threads that have contact numbers but evidently it isn't so easy to get through to them.
 
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Is there even an email address to message dr Klimas I just really need her advice on where to go next with this awful condition? Ive searched the internet but can see nothing! she's literally impossible to contact
 

SOC

Senior Member
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Is there even an email address to message dr Klimas I just really need her advice on where to go next with this awful condition? Ive searched the internet but can see nothing! she's literally impossible to contact
Dr Klimas, and most other US physicians, will not give medical advice over the phone or by email to a non-patient. And, as Sushi said, she's not taking new patients. In fact, all the doctors at INIM have closed practices at the moment, so the best one can do is get on the waiting list and hope something opens up in the next 6 months.
 
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Is there even an email address to message dr Klimas I just really need her advice on where to go next with this awful condition? Ive searched the internet but can see nothing! she's literally impossible to contact
There is an email to get to her as well as Dr. Rey but you have to be part of the Nova Southeastern University network to access them. I am an alumni of the school so I had access. Unfortunately, the office is severely backlogged for appointments and I had to wait 3 months for a follow up appointment after my initial one in July.