Seeking information on long-term outcomes with Dr. Kaufman

[crypt0cu1t]

I have been helped by Valcyte, LDN, antibiotics, and IVIG, prescribed by Dr. Kaufman. He also diagnosed and treated my MCAS, found the cause of my POTS and has helped with those meds, and has done an excellent job with diagnostic testing, 95% of which was covered by insurance.

Could you expand on "found the cause of my POTS". What did Dr. Kaufman determine was the cause of your POTS?

Hey Chris, are you on IVIG for autoimmune issues? If so did you have any abnormal antibodies?

 

[Learner1]

Sorry to be answering this now, it seems my quote was attributed to Chris160, so I wasn't tagged, so I just noticed it now and am answering the questions associated with my quote.

Could you expand on "found the cause of my POTS". What did Dr. Kaufman determine was the cause of your POTS?

The CellTrend antibody test was positive for 2 antibodies that can cause POTS. Dr K believes my sneaky case of EBV likely triggered the antibodies, causing my POTS. Resesrch seems to back this theory up.

That’s great. I am considering LDN. How did it help you? Also, how did you get IVIG? Did you have low subclasses

I have been on 4.5mg LDN every evening for several months. I haven't felt anything in particularly positive or negative from it, though, theoretically, it should be helping my immune system.

Yes, I had low immunoglobulins.

Hey Chris, are you on IVIG for autoimmune issues? If so did you have any abnormal antibodies?

Yes, I had adrenergic and muscarinic antibodies. I was put on IVIG for both immunodeficiency as well as autoimmunity. I'm on a higher, autoimmune dose.

 

[Dakota15]

@Learner1 Can I ask what antibodies you tested positive for on your CellTrend Test? Just was curious.

 

[Learner1]

A1 and M4

 

[Dakota15]

That's the same case for me as well - the A1 was positive and M4 was "at risk" (I'm a patient of Dr. Chheda's).

Does Dr. Kaufman have you taking anything for POTS specifically or is his strategy to target the EBV/MCAS?

If you'd prefer to DM I can use that channel too.

 

[Learner1]

Dr. K picked up on my POTS right away. He says its autoimmune and attacking it is part of why he prescribed IVIG. He is very knowledgeable about the meds.

I saw a dysautonomia specialist for my POTS, who tested me and precribed pyridostigmine, which helped some, but not enough. Dr. K added propranolol, which helped a lot. The dysautonomia specialist approved. My BP was still spiking so Dr. K put me on naldolol, which is longer acting. The dysautonomia specialist approved and has ordered CPET to investigate my intolerance of aerobic exercise.

 

[pibee]

A1 and M4

That's the same case for me as well - the A1 was positive and M4 was "at risk" (I'm a patient of Dr. Chheda's).

I wonder do really 92% of POTS patients, and 0% controls (or close) test pos for A1, as recent Dysautonomia conference suggested. Or they said A1+some of the muscarinic? Not sure

I am also positive for A1. and others. Only negative for B1 (but it was close as well)

 

[StarChild56]

A1 and M4

Oh wow! I was pos on A1 and at risk for M4 but Dr.K said my A1 was very low. But then I was pos for 2 of the supposedly important Early Sjogrens screen, I asked Dr. K if I should be concerned and he said, "only in the sense that it may give us some answers and guide some treatment decisions. it is an autoimmune disease very associated with/causing dysautonomia, fatigue, pain." My POTS is awful among other things so I am hoping that my appointment at the end of the month means something new for treatment and hope.

Dr. K added propranolol

I am on propanalol which helps. But not enough.

the A1 was positive and M4 was "at risk"

Hey, same here (though my A1 was low according to Dr. K even though it was positive on cell trend

 

[Learner1]

I asked Dr. K if I should be concerned and he said, "only in the sense that it may give us some answers and guide some treatment decisions. it is an autoimmune disease very associated with/causing dysautonomia, fatigue, pain."
My POTS is awful among other things so I am hoping that my appointment at the end of the month means something new for treatment and hope.

I am on propranolol which helps. But not enough.

He was looking to confirm a tendency to autoimmunity and for an explanation for my POTS.

He originally put me on propranolol. My dysautonomia specialist added pyridostigmine (Mestinon). But my BP still spiked, so Dr. K switched me to naldolol. He seems familiar with many different POTS meds, so you might familiarize yourself with all of them before you talk to him do you'll be ready to ask sny questions about your situation.

The IVIG is the longer term treatment to go aftrr the autoimmunity.

All of these together have reduced my dizziness, fainting, inability to stand, and heat intolerance dramatically and improved my ability to exercise, though I still have huge issues with aerobic exercise or any intense movement.

 

[StarChild56]

He was looking to confirm a tendency to autoimmunity and for an explanation for my POTS.

He originally put me on propranolol. My dysautonomia specialist added pyridostigmine (Mestinon). But my BP still spiked, so Dr. K switched me to naldolol. He seems familiar with many different POTS meds, so you might familiarize yourself with all of them before you talk to him do you'll be ready to ask sny questions about your situation.

The IVIG is the longer term treatment to go aftrr the autoimmunity.

All of these together have reduced my dizziness, fainting, inability to stand, and heat intolerance dramatically and improved my ability to exercise, though I still have huge issues with aerobic exercise or any intense movement.

Thank you for all the info - it is helpful!

I have taken my BP/HR readings and sent them to Dr. K at his request frequently and he generally seems pleased with how I improved with the propanalol. But I think my latest set will maybe change his mind - I think I have worsened. Also I have a huge problem with migraines/tinnitus and history of onset right after MVA, with whiplash, I have bad neck pain - so that is another avenue he is pursuing for me to r/o CSF. We have a lot to talk about (his words) based upon my last set of bloodwork (with the early Sjoren's screen positives).

I feel like my autoimmune stuff is present enough to cause problems but seems not bad enough to warrant IVIG - until perhaps now, Idk, will see at next appointment. Sorry I am rambling!

 

[Dakota15]

@Forçe e Honra My test result was 12.9 on the A1 I believe, do you recall where your number stood?

 

[StarChild56]

@Forçe e Honra My test result was 12.9 on the A1 I believe, do you recall where your number stood?

Anti -1- adrenergic Antibodies <7.0 U/ml: negative > 7.0 U/ml: positive 13.4 (positive)

anti-Muscarinic Cholinergic Receptor 4 - Antibodies <5.0 U/ml: negative 5.0 – 7.0 U/ml: at risk > 7.0 U/ml: positive 5.4 (at risk)

 

[StarChild56]

I realize no one can give medical advice. Also that this may be very different for each of us. But I want to ask if anyone has experience with bad POTS and gently walking in a warm pool. Before my POTS, I would slowly walk in the 4 foot or higher end of the pool (I'm short so it was good). It was something that would not trigger bad PEM.

I recently have had some of my horrific malaise lifted, but still I immediately have the horrific POTS symptoms when I stand and I can't stand for very long. I am going to the pool today, my son will drive me and push me in my wheelchair directly to the pool. I was hoping I could actually do a little slow walking and that it won't affect my POTS but I do not know. If it does, I will float on my back, I don't think I am strong enough to actually swim (although I used to be a good swimmer). I guess I could try a slow crawl or slow modified breast stroke. I just wondered if anyone knew if the pool (and it is salt water and chlorine) may not have the same gravitational pull on my blood like standing on regular earth.

Oi. Hope this is somewhat understandable.

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.

 

[Learner1]

I've always been a swimmer. At the moment, I can't swim more than 2 slow laps without my heart racing too fast. My dysautonomia specialist is sending me for a CPET to see if we can figure out anything else about my situation that could lead to improved function.

But, if you just are walking and blood seems to pool in your lower legs, the pressure of the water should help. It should behave like graded compression stockings and help to push the pooling blood upwards, so its distributed more normally. Cool to slightly warm water should be ok. My experience is that heat always makes me worse.

Let us know how it goes for you!

 

[StarChild56]

I've always been a swimmer. At the moment, I can't swim more than 2 slow laps without my heart racing too fast. My dysautonomia specialist is sending me for a CPET to see if we can figure out anything else about my situation that could lead to improved function.

But, if you just are walking and blood seems to pool in your lower legs, the pressure of the water should help. It should behave like graded compression stockings and help to push the pooling blood upwards, so its distributed more normally. Cool to slightly warm water should be ok. My experience is that heat always makes me worse.

Let us know how it goes for you!

You just gave me so much hope! I would only walk super slowly. The thing is, I get out of breath literally like from standing up sometimes right away or after a few steps. Again, though, the water might change that so it is worth a try. My heart beat goes from resting 67 to standing 100+ and over 130 in under 9 minutes. With propanalol at the right time (like not when it is going to run out or when it was just taken), I can have lower numbers but I can also get even higher. Swimming I am afraid would raise my HR.

My son can't take us (me and my 8 year old) but my husband comes home from work around 4 and I hope he can take us or if not, for sure tomorrow. I will be sure to let you know how it turned out.

I have learned so much from your posts, and I just really appreciate all you contribute. You and @Gingergrrl have both helped me so much. Thank you.

 

[Dakota15]

It's interesting that you guys both are currently taking propanalol (if I followed the thread accurately - and that both of you are patients at the Center for Complex Diseases).

Dr. Chheda has me on metropolol at the moment but I have not noticed any impact yet - I don't recall any mention of propanlol when we discussed a few options (I remember clonidine being considered). Just found it interesting if we have similiar A1 / M4 elevated numbers, but I'm far from a medical professional and acknowledge that there must be a number of factors I'd wager to be considered.

 

[Learner1]

Actually, I recently switched to longer acting naldolol from the propranolol which was petering out too fast.

My meds are chosen by function, if there's an FDA version I can take due to my allergies, and if not, whether its possible to compound it, so I don't always end up on the doctor's first choice drug.

 

[StarChild56]

Actually, I recently switched to longer acting naldolol from the propranolol which was petering out too fast.

So interesting you say this, as I was first only taking 1/2 a propanalol upon waking and then 4 hours later. It ran out too fast for me too, start noticing an increase in HR even before 3rd hour but closer to the 4th hour worse and worse. I did my BP and HR readings for a few days and sent them to Dr. K and he had me add in another 1/2 a propanalol 5 hours after my 2nd dose. It helps. But does not keep my HR normal by any means.

I sometimes have big drops in BP when going from laying to standing (even laying to sitting) along with the racing heart so I don't know if that has an impact on med choice.

I will do more BP/HR readings closer to my next appointment so he can review and see if he thinks a med change is in order. Or an increase.

 

[Gingergrrl]

I wonder do really 92% of POTS patients, and 0% controls (or close) test pos for A1, as recent Dysautonomia conference suggested. Or they said A1+some of the muscarinic? Not sure

@pibee I did not get to follow everything from the Dysautonomia conference but that is really interesting if they said that 92% of POTS patients test positive for the A1 autoantibody. I feel like the case for Autoimmune POTS keeps getting stronger (even if we are just one of the many sub-groups of POTS).

In case this is relevant for anyone reading (I know you already heard all this @pibee, and apologize you have to hear it again!), I was positive for 7/9 Cell Trend autoantibodies and we ran the tests twice. This was in 2016 & 2017 before they added the two new tests which I will be doing in Aug, and redoing all of the Cell Trend tests, after my 6th Ritux infusion.

My A1 was 22.6 on first test (June 2016) and was 27.3 on second test (Jan 2017) and anything above 7.0 is considered positive. All of this was prior to me starting Rituximab in Aug 2017 and the first test was prior to me even starting IVIG.

My POTS is awful among other things so I am hoping that my appointment at the end of the month means something new for treatment and hope.

I hope so, too, and I know you will keep me posted.

I am on propanalol which helps. But not enough.

@Forçe e Honra Have you tried a cardio-selective beta blocker like Atenolol? I do very well with Atenolol (and have never tried Propranolol but it is not cardio-selective which is what I need for POTS).

I feel like my autoimmune stuff is present enough to cause problems but seems not bad enough to warrant IVIG - until perhaps now, Idk, will see at next appointment. Sorry I am rambling!

I will be very curious to hear about your next appt and if IVIG is recommended. And you are not rambling!

But I want to ask if anyone has experience with bad POTS and gently walking in a warm pool.

I have never been a swimmer or enjoyed pools so am not the best person to comment! At one point, I read something about how trying to walk in a pool was not good for pulmonary restriction (an issue that tormented me prior to treatment) but it had nothing to do with POTS and probably not relevant in your case.

You and @Gingergrrl have both helped me so much. Thank you.

You are welcome and you have helped me a lot, too, with all of your support and great info re: my insurance mess.

It's interesting that you guys both are currently taking propanalol (if I followed the thread accurately - and that both of you are patients at the Center for Complex Diseases).

I know you were not asking me @Dakota15 but I am also a patient at CCD but I take Atenolol for POTS (plus Midodrine). Both were initially prescribed by a former cardiologist but I have not seen him in about two years and my doctor at CCD prescribes them both for me now.

 

[StarChild56]

I hope so, too, and I know you will keep me posted.

Thank you and absolutely I will.

You are welcome and you have helped me a lot, too, with all of your support and great info re: my insurance mess.

Have you tried a cardio-selective beta blocker like Atenolol? I do very well with Atenolol (and have never tried Propranolol but it is not cardio-selective which is what I need for POTS).

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. But I could be wrong. But even just standing up I instantly am out of breath before even taking a few steps. Here is an ex:
Laying down: 115/73 82 bpm
Stand up : 107/69 114 bpm
I actually stood up and did a few things for 19 minutes which is RARE - only once in a blue moon and it was awful, I was very weak, sick, dizzy, leaning on counters, etc. but a rare time I could push myself (most times I can only lay down, period) and then my vitals were: 132/85 and 143 bpm. It was then time to take my next propanalol and this is not even the most extreme numbers just showing one as an example. Another example where my propanalol was not due for another hour:
Laying down: 120/69 69 bpm
Stood up (but kept got error message took a couple minutes to get reading): 138/87 and 96 bpm
Brushed teeth, rinsed out sink with hot water soap, 6 minutes standing:
134/84 105 bpm
Another:
127/84 75 bpm laying
134/85 105 bpm stand
142/89 134 bpm stood for 10 minutes and took propanalol 2 hours and 50 minutes earlier (and it was the last dose of the day)
These aren't my worst but it is what I pulled up on my phone quickly. The thing is - whatever those numbers are I feel awful even sitting up, worse standing and it is very debilitating. Sorry I've gone off on a tangent.