Seeking information on long-term outcomes with Dr. Kaufman

[wigglethemouse]

Also, before POTS but with ME/CFS, the pool actually made me feel better and I read something about the good effects for pwME although I've forgotten what it was.

In Julie Rehmeyer's book "Through the Shadowlands: A Science Writer's Odyssey Into an Illness Science Doesn't Understand" she had improvement by going to the swimming pool. Thought it was related to clearing all the mold from her body.

 

[StarChild56]

In Julie Rehmeyer's book "Through the Shadowlands: A Science Writer's Odyssey Into an Illness Science Doesn't Understand" she had improvement by going to the swimming pool. Thought it was related to clearing all the mold from her body.

That is very interesting, indeed! I wish I could find the reference about it maybe being good on a molecular level...argh too much brain fog if I think of it I will find it and post it.

 

[StarChild56]

I don't want to keep derailing this thread, so I am going to start another thread about being in the pool. I found an interesting article about it.

 

[perrier]

Any news of Ivorin?

 

[crypt0cu1t]

Any news of Ivorin?

I'm wondering this too

 

[Gingergrrl]

Any news of Ivorin?

I've been very curious about how @ivorin is doing as well and hoping he will post again some day to let us know.

 

[Gingergrrl]

No, propanalol is the first med Dr. K prescribed and he seems to feel like the improvements it has made is good...I don't know if he will think differently when we have our appointment when I tell him I think it has worsened and I think my BP/HR readings bear that out.

@Forçe e Honra I have never taken Propranolol but from what you described, it sounds like it is short-acting and you have to take it every few hours throughout the day? If this is the case, I would ask Dr. K about Atenolol b/c it is long-acting (like 12 hours) and is a cardio-selective beta blocker. There may be a reason he wants you on Propranolol but I would inquire out of curiosity.

 

[StarChild56]

I have never taken Propranolol but from what you described, it sounds like it is short-acting and you have to take it every few hours throughout the day? If this is the case, I would ask Dr. K about Atenolol b/c it is long-acting (like 12 hours) and is a cardio-selective beta blocker. There may be a reason he wants you on Propranolol but I would inquire out of curiosity.

Yes, it seems to be really effective for 2 or 3 hours and I take it once in am, then 4 hours later, then 5 hours later.

Thank you, I will ask him about it. I think. I have so much to ask him, and he said he has so much to go over, I am definitely going to create a document with all my questions that includes space underneath for me to write his responses, plus I'll email it to him in advance in case he wants to review it. But I will also have to ensure I get some more recent (like week before) the appointment BP and HR readings at different times/days so he can make his decision (the numbers so far have been what have driven his decision to add in another dose but did not seem to make him want to change the med). Propanalol also happens to be something used as a migraine preventative (albeit in much higher doses). Not sure if that matters but will add to my list.

I have noticed though, since using Cortef, my BP is much higher than it used to be. I was almost always like 107, 112 over 70 and now after Cortef while sometimes I get some numbers like that, more often it is like 124, 130, even 135 laying down. I need to ask him about that. The propanalol seems to lower my BP when in the sweet spot for med effectiveness.

 

[Gingergrrl]

Propanalol also happens to be something used as a migraine preventative (albeit in much higher doses). Not sure if that matters but will add to my list.

In that case, he might have you on Propranolol to treat both POTS and migraines (and would not want a cardio-selective beta blocker if he is using it for something other than POTS).

I have noticed though, since using Cortef, my BP is much higher than it used to be. I was almost always like 107, 112 over 70 and now after Cortef while sometimes I get some numbers like that, more often it is like 124, 130, even 135 laying down. I need to ask him about that. The propanalol seems to lower my BP when in the sweet spot for med effectiveness.

That is interesting and when he started me on Cortef (to try to stop the anaphylaxis reactions) he had hoped that it would also raise my BP which had been around 80/50 for 2-3 years at that point. It never raised my BP but did help the allergic reactions (along with many other meds).

The only thing that truly raised my BP (and maintains it there for many weeks) is IVIG and my BP now reaches 100/70 on most days and I can really tell the difference. But your case sounds different if you are using the Propranolol to actually lower your BP (when we were trying to raise mine with Midodrine).

It sounds like you have enough to ask him without my added questions and hope I did not add any confusion!

 

[StarChild56]

In that case, he might have you on Propranolol to treat both POTS and migraines (and would not want a cardio-selective beta blocker if he is using it for something other than POTS).

That may be true though I will have to ask him because the neurologist I saw said that I believe they start you at like 50mg of propanalol or maybe even 80mg for preventative and I am not taking anywhere near that amount. And at that time - That was very early September last year - I started the propanalol, the magnesium the neurologist recommended - and soon after my migraines (I was having way over 15 a month and using 30 imitrex a month which is not safe) lessened and had gotten down to 4 or under a month for many months - it was great. They have been slowly increasing, harder to get the pain down, have to take more meds and have more pain - and for the last 3 months they've been really bad. Tinnitus has returned. ( I don't know what a cardio-selective beta blocker is but will definitely look it up once done here).

The only thing that truly raised my BP (and maintains it there for many weeks) is IVIG and my BP now reaches 100/70 on most days and I can really tell the difference. But your case sounds different if you are using the Propranolol to actually lower your BP (when we were trying to raise mine with Midodrine).

Sorry I must have confused things. I am not on propanalol to lower my BP - it was never high before Cortef. I was put on it for POTS, for the HR. It does help keep the heart rate from going as high, and I notice that it also now lowers my BP that has only been higher with the Cortef. I have not talked to Dr. K about this but I will. It is going on the list, the long list for next appointment! (prior to Cortef, and even now sometimes with it, I will get wild readings like 80/50 but not often. I often can get 106/60 if I am laying in bed, quiet, just awakened. This is before any meds for the day. That is what makes me think Cortef may be making it raise.

You are not confusing things at all and I appreciate your kindness, support and knowledge very much!

 

[Gingergrrl]

( I don't know what a cardio-selective beta blocker is but will definitely look it up once done here).

You should definitely Google it in case my explanation makes no sense . My understanding is that cardio-selective beta blockers target the heart and only block adrenaline (epinephrine) to the heart and do not affect other parts of the body. Metoprolol and Atenolol (and I think a few other beta blockers) are cardio-selective vs. Propranolol is not.

They often say that anyone with asthma should not take a beta blocker b/c it worsens breathing (I do not have asthma) but if you do, it is also preferable to take a cardio-selective BB. From my understanding they are also much more potent for tachycardia (from POTS or other causes).

Sorry I must have confused things. I am not on propanalol to lower my BP - it was never high before Cortef.

I thought you meant that Cortef was raising your BP and that now you wanted to keep it a little lower (vs. before Cortef it was okay). Mine is just chronically low, all the time. Even Midodrine does not raise it, although it makes me feel better.

It is going on the list, the long list for next appointment!

My lists are unbelievably long, too. I might think I've got it down to 10 or 15 questions but then realize that each question has like 10 sub-questions LOL

 

[StarChild56]

They often say that anyone with asthma should not take a beta blocker b/c it worsens breathing (I do not have asthma) but if you do, it is also preferable to take a cardio-selective BB. From my understanding they are also much more potent for tachycardia (from POTS or other causes).

I do have asthma, last categorized as moderately severe...so this is something to think about for sure. I am going to look it up (the cardio selective) later on because at this point I am crashing just a tad, so brain fog is really bad and feel that wiped feeling like the air let out of the balloon.

I thought you meant that Cortef was raising your BP and that now you wanted to keep it a little lower (vs. before Cortef it was okay). Mine is just chronically low, all the time. Even Midodrine does not raise it, although it makes me feel better.

I do think Cortef is raising my BP because it was never this high prior to taking it. My blood pressure was always on the lower side (always way under 120) - except sometimes when my pain was exceptionally bad but that is to be expected. I don't know if it is really a big deal or not, that my BP is consistently higher now after Cortef, it is something I will ask Dr. K about.
I'm glad the Midodrine makes you feel better. I have had times where my BP drops quickly (like 20 points, occasionally more and my BP will be 100 or even occasionally lower and I feel awful so I can understand how yucky that feels though it is not frequent with me.

My lists are unbelievably long, too. I might think I've got it down to 10 or 15 questions but then realize that each question has like 10 sub-questions LO

Lol, right? Whew. And those are just what we want to ask, not even what he wants to discuss based on the recent labs that he said "there is a lot to discuss at our next appointment.".

 

[Wally]

@Forçe e Honra and @Learner1 - I don’t know if you have seen this article about water therapy written by Erica Verrillo at http://cfstreatment.blogspot.com/search?q=water+therapy. It may not be relevant to helping with what you are dealing with, but since you were talking about being in a pool I thought this info. could possibly be of interest to you.

 

[StarChild56]

@Forçe e Honra and @Learner1 - I don’t know if you have seen this article about water therapy written by Erica Verrillo at http://cfstreatment.blogspot.com/search?q=water therapy. It may not be relevant to helping with what you are dealing with, but since you were talking about being in a pool I thought this info. could possibly be of interest to you.

Thank you for sharing this! I actually saw this earlier in my search and read a small portion of it but just read the whole thing.

I like a lot of it and I think a lot applies to me thus far. My only - modifications - the pool I am in I think is higher than 86 degrees though I could be wrong. I can not stand any colder. I also am not able to do a modified breast stroke (I'd hoped to be able to) at this time. What I really liked is that it seems other than not overheating, being in deep water (which I like), vertical, I liked and for at least an hour (which is close to my max) and that water walking is not even necessary (I overdid it yesterday).

Thanks again

 

[Learner1]

@Forçe e Honra and @Learner1 - I don’t know if you have seen this article about water therapy written by Erica Verrillo at http://cfstreatment.blogspot.com/search?q=water therapy. It may not be relevant to helping with what you are dealing with, but since you were talking about being in a pool I thought this info. could possibly be of interest to you.

Thanks @Wally the points about the lymphatic system are good ones. I love water, and in fact, was in a lake today!!

 

[Dakota15]

Can I ask what Ivorin is?

 

[crypt0cu1t]

Can I ask what Ivorin is?

He's the person who created this thread lol
@ivorin

 

[StarChild56]

@Wally - I went to the pool for the second time yesterday and I was wrong - the pool is around 80-86 degrees! (I would like it warmer but it sounds like from what I read that it is better at this temp. I also took the advice in the article and although I "walked" (super slow) for about 15 minutes in the pool, the rest of the 45 minutes I did not walk. I was in the deep end (which is 4.5 to 4 feet, mostly the 4.5 feet which is my shoulders or a little above). Upright. I gently moved my arms and legs, my son and I would play (I was careful not to move around too much). It was great. And I did not have aching legs afterwards.

Ok I am sorry I am derailing this thread I will post in my Pool thread but just wanted to thank you again for that article. It encouraged me to just be in the pool and not walking - and that it is beneficial. Which it really is.

 

[Wally]

@Forçe e Honra - I did not see your other post about the pool, so I did not realize you had seen the article. But I guess it was “meant to be” that I linked to it again. So glad it made you feel a little better, those small moments of relief from this illness are so important to keep the faith that there are more clues just waiting to be uncovered to solve this illness.

You may want to read the two books Erica Verrillo has written (linked on her blog), one is free and I think the other one is $3.99. She is a long time patient and journalist. Very bright, kind and a wealth of information. I had the opportunity to talk with her and also meet her in person on a number of occasions. I think a lot of people in our community especially newer ones do not realize her long time involvement/dedication in helping this community, as well as the vast knowledge she possesses about the illness. I have not talked to her in awhile, my fault as I got myself involved in advocacy efforts that ended up taking a big took toll on my health and I pretty much went MIA for self-preservation.

I saw that she started a new organization - https://ammes.org/staff-and-board-members/ . If you want to talk to her a bit more (about water therapy or other treatments/therapies that she has investigated that might be worth a try (or not) for the symptoms you deal with) I would definitely try to contact her.

P.S. I live in Northern Ca. as well. I have met Dr. Kaufman* and know most of his staff. He is definitely a very caring and smart doctor and he seems to really try to investigate all the issues patients may be dealing with. I think his office has had an uptick in patients coming to his clinic who have underlying mast cell problems. Interesting what symptoms or other health issues this illness seems to turn on or up.

*Edit - I am not a patient of Dr. Kaufman, but I have talked with him, watched him in action and referred patients to him. I got to know about him when Dr. Kogelnik brought him onboard at the Open Medicine Clinic (OMC). I was sorry to see he and Dr. Chheda leave OMC (they are still in the same office complex), but I give Dr. Kogelnik a lot of credit for bringing two more really good doctors into the the ME/CFS fold to try and help patients with this and other complex illnesses.

 

[StarChild56]

I did not see your other post about the pool, so I did not realize you had seen the article. But I guess it was “meant to be” that I linked to it again. So glad it made you feel a little better, those small moments of relief from this illness are so important to keep the faith that there are more clues just waiting to be uncovered to solve this illness.

I may not even have posted about it (a little brain foggy this am, after having a little bit of the fog cleared for a couple days) but I don't think I read the whole article at that time. So it was really great that you posted it and I was able to read the whole article. I (like many here I believe) have trouble reading/comprehending frequently but I did get a lot out of it. Did I write here that I asked and the temp of my pool is between 80-86? Which is exactly what the article recommends. Also it was really nice to hear I don't have to walk in the water just being upright in it for an hour will be therapeutic. Very reassuring and less taxing.

You may want to read the two books Erica Verrillo has written (linked on her blog), one is free and I think the other one is $3.99. She is a long time patient and journalist.

I will definitely add her to my list of resources I've been loosely keeping. I have to pace myself on reading/researching, etc. Thank you for the suggestion.

.S. I live in Northern Ca. as well. I have met Dr. Kaufman* and know most of his staff. He is definitely a very caring and smart doctor and he seems to really try to investigate all the issues patients may be dealing with. I think his office has had an uptick in patients coming to his clinic who have underlying mast cell problems. Interesting what symptoms or other health issues this illness seems to turn on or up.

He is very caring and smart. We have been working on my MCAS issues and it has taken a long time, lots of meds and increases in meds but I've improved in the most problematic sx which I am so very relieved about.

I was sorry to see he and Dr. Chheda leave OMC (they are still in the same office complex), but I give Dr. Kogelnik a lot of credit for bringing two more really good doctors into the the ME/CFS fold to try and help patients with this and other complex illnesses.

I started with Dr. Kaufman when he and Dr. Chheda moved but I think I see it in a way as a good thing, as we need MORE CFS/ME/Complex Disease specialists and so now Dr. Kogelnik has brought in 2 more docs - that is a great thing!