Current or Former Patients of Blair Grubb?

[Jyoti]

If you have personal experience of Dr. Grubb I would be very interested in your advice or experience.

I put myself on his wait list a few years ago and ..... forgot about it.

In the meantime, I found a neurologist who specializes in dysautonomia within a two hour drive. Earlier this week, I got a call from Dr. Grubb's office offering me an appointment in April. (Toledo--where Grubb works-- is REAL travel for me. ) I am trying to decide if following through on the opportunity to meet with Dr. Grubb makes sense and is worth the effort of getting to him. I know he is widely loved and admired, but......

My neurologist has been thorough, spent lots of time with me, done and ordered a broad range of tests. He has trialed me on Midodrine, Propranolol, Ivabradine, all to either ill or no effect. I find that increased salt and fluids as well as compression garments change nothing in terms of my orthostatic symptoms. Currently, I am on Mestinon at a very small dose and it is revelatory. I can exercise a bit with some enjoyment and my overall function has increased by at least 15%. Which, as we know, is significant!

There are, however, some areas where I feel my neurologist has kind of 'lost interest' in me. I am not tragically young, I don't have LC--which sadly has created a surge of new patients for him, I am not severe (though my former life has been well and truly wrecked by POTS, ME/CFS, hEDS, spinal instability) and I don't pose any fascinating challenges for him.

For instance--I have had some autoantibody tests that were clearly abnormal but he has brushed those off. Same with SS-A and SS-B, although I have the symptoms. I know that those blood tests are not particularly accurate and if there is a suspicion of Srogren's clinically it makes sense to do a biopsy. I'm not clamoring for a biopsy, mind you. Just slightly perturbed that he does not consider or discuss it. Mostly--it seems like there are no huge red flags, so I am now considered a routine POTS patient who gets routine check-ins and nothing more. My POTS has not changed at all, stand tests are no different to what they were when I first saw him, etc.

In addition, last year I had a dexamethasone epidural for SI joint pain and while it took two weeks to kick in, the pain subsided at about day 14 and stayed away till day 26. Strangely, from days 14 to 26, I had complete remission of all POTS symptoms. As the pain returned, so did the increase in upright heart rate, pre-syncope, etc. I saw him during this window and he dismissed any connection--no curiosity-- and suggested that, well, basically, I was pretty much cured and we could titrate off all meds and send me on my way if it held.

I like this neurologist and am grateful for his attention and experience. He has taken me seriously, he has been willing to try most of the POTS-related meds and he is both knowledgable and kind. He does not recognize ME/CFS, though, and routinely tells me I need to walk more than 60 minutes every day and really 'huff and puff.' I just ignore what is contraindicated by my other conditions and take what I can from him. I feel like the returns are diminishing.

So here is my question: what in your experience does Dr. Grubb offer that would be different? That might or might not make it worth my while to travel to Toledo? I know there is no magic bullet or we would all have better things to do than hang around here! But given what you know, do you think he would have any thoughts/approaches that might differ from my neurologist? I am also quite interested in how you feel he holds ME/CFS as a co-occuring diagnosis.

Thanks for any input or ideas any of you can share!

 

[Belbyr]

I've been to see Dr Grubb and Beverly. It's been about 4-5 years ago. I was a little underwhelmed, but at the same time it seems I might have something else going on, not sure just yet.

They didn't do much testing on me more focus was on trying to find a medication that helped.

If you are wanting a full workup for dysautonomia, I would go see Dr Chemali. He will run you through tilt, sweat, skin biopsy, autoimmune panels, lip biopsy if needed, pre-diabetic testing, EMG/nerve conduction testing, etc. He wasn't able to find anything but we ruled out a lot.

 

[godlovesatrier]

Hey Jyoti,

I can't attest for Grubb, wrong continent =) But glad the mestinon worked, my god so many drugs to find one that works, it is insane. Dr Bansal will no doubt help if I ask plus I'd be very happy to. But still not sure if my dizziness is dysautonomia, maybe it is. I'll have to ask him about these drugs, so we can try them.

My doxy experiment was very unpleasant so won't be doing that again.

 

[Jyoti]

Thanks, godlovesatrier! Nice to hear from you. It sounds like Dr. Bansal is a really good fit for your symptoms; I hope he can help you-- make more progress. Finding out if your dizziness is dysautonomia seems like a reasonable step. It is so common amongst us, and my experience is that it is pretty well accepted in the allopathic community, likely because it can be measured in a very 'satisfying' way.

And yeah...while --as usual--no one really knows much about the causes of POTS, for instance, there are a number of things that can treat the symptoms, make them less onerous. I've dialed down my symptoms with a handful of things including o-t-c H1 and H2 blockers, which I think you have also tried at some point. And some super-duper quercetin too. So....knowing if you have it (or some other form of dysautonomia) can give you a small leg up on the big picture.

Sorry about the doxy. So sucks to try something, have hopes and not only are they dashed, but things get worse as a result.

 

[Jyoti]

@Belbyr Thanks for sharing your experience. Ahhh....it would be lovely to see Dr Chemali. I believe he is Lauren Stiles' doctor and she raves about him. My neurologist did much of what you describe Chemali doing...I just feel like he ran out of steam or interest at about 85% of the way through the whole project. We did rule out a lot, and like you, did not find any causative situation.

I guess I am trying to assess the worth of going for the remaining 15%. You know---what IF IVIG was THE answer???? Though mostly feeling fortunate, not only to have this opportunity to see Dr. Grubb, but to have had the work-up my neurologist has already done.

Did you end up with any treatment that improved your quality of life?

 

[lenora]

@Jyoti.....Can you keep the neurologist you've been seeing? All in all, he may be very interested in what the new Dr. performs in the way of tests and what he uses for treatment.

I realize that you're abroad, but here it isn't unusual at all to get second or third opinions....and in all honesty, at this time at least (COVID) doctors aren't sending their usual reports to other doctors.

He sounds like he's been a good doctor for you, done the very best he can and could be open to new ideas himself. That can mean a lot, but it also means that you're the one who will have to keep up with new treatments, etc. Doctors only have so much time and can quickly become overwhelmed. It sounds like you get along well together....so I would try to see the new doctor, and report back to the old. You also need to keep someone who lives closer to you. Good luck. Yours, Lenora

 

[Judee]

what in your experience does Dr. Grubb offer that would be different?...But given what you know, do you think he would have any thoughts/approaches that might differ from my neurologist?

When I look online it seems like this doctor is a Cardiologist. I was thinking you were talking about a 2nd neurologist or switching to him as a new neurologist but would you have to if he is a different speciality? Couldn't you have both on your team? Sorry for my confusion.

 

[Jyoti]

Couldn't you have both on your team? Sorry for my confusion.

That's a sensible question, @Judee! Thank you. They are both dysautonomia specialists--most of that ilk are either cardiologists (since a large number of the symptoms are cardiovascular) or neurologists (since the cause is most likely neurological). But what they know, what they can test for, what they can offer in terms of intervention--it's pretty much the same, though obviously one will be more focused on the heart and the other on the nervous system.

I think I am just frustrated with the compartmentalizing. So many people with ME/CFS have dysautonomia and vice versa. It is wonderful to have one portion of my symptom set acknowledged, measured and treated, but it would be really nice to find someone who treats dysautonomia and, even if it is not his/her area of expertise, recognizes that I also have another syndrome (ME/CFS, hEDS) or two that donot allow me to 'huff and puff' daily!

I think there is also the autoimmunity question, which seems to fit neatly into neither camp (cardiology of neurology) and so...the exploration of that possibility really depends on the individual physician and how able they are to stretch beyond the traditional limits of their specialty. I have heard that Dr. Grubb is just an amazing human being--and having seen a few of his presentations over the years on video, he seems to be a real healer.

And ultimately, I don't have to give up the neurologist if I see Grubb. It is just a big energy expenditure and I am trying to figure out if it feels worthwhile.

 

[Belbyr]

@Belbyr Thanks for sharing your experience. Ahhh....it would be lovely to see Dr Chemali. I believe he is Lauren Stiles' doctor and she raves about him. My neurologist did much of what you describe Chemali doing...I just feel like he ran out of steam or interest at about 85% of the way through the whole project. We did rule out a lot, and like you, did not find any causative situation.

I guess I am trying to assess the worth of going for the remaining 15%. You know---what IF IVIG was THE answer???? Though mostly feeling fortunate, not only to have this opportunity to see Dr. Grubb, but to have had the work-up my neurologist has already done.

Did you end up with any treatment that improved your quality of life?

So where I'm at right now is I have one neurologist thinking I have LEMS. But the issue is, even though I have had 1 positive test for N type VGCC antibodies, I've had other tests before and after that say negative. My EMG and nerve conduction tests are suspect at the moment. The short of it is, if I truly have LEMS, then it is a very very mild case on paper. I would not say I am a mild case in person though.

I have been all over the country seeing the best doctors, and no one has been able to truly help me get out of this rut I have been in for 17 years.

There is a new development though. Because 75% of my symptoms are gastrointestinal, I have run across a subform on Reddit called 'NoBurp'. I've known since I was a little kid, that I could never burp no matter what. Apparently it can wreck havoc on you GI system when you reach full maturity which happened to me.

All this time I've been looking into gastroparesis, dysmotility, POTS, etc and not realizing UES is probably causing the severe bloating/pain, and it might even be causing the chronic nausea that I have had. I can eat a steak without issue, to which one doctor said 'you don't have gastroparesis if you can do that'. My smart pill test was normal.

I'm setup to do a botox injection into the UES sometime soon, to see if that will help me get the build up of air out. There seems to be quite a lot of people with chronic gastro issues like myself on Reddit getting relief or full on cure from this simple procedure.

Will it help my fatigue and upper body muscle soreness that I have attributed to CFS, I don't know?

 

[Jyoti]

I have been all over the country seeing the best doctors, and no one has been able to truly help me get out of this rut I have been in for 17 years.

You have my heartfelt sympathy. Your GI symptoms sounds absolutely excruciating; I really hope that the botox injection makes a big difference in that. And wouldn't a bonus be that the other symptoms dissipated?

Best luck!

 

[lenora]

It's highly possible that you have Fibromaylgia (FM) in addition to CFS. It's surprising how much pain can come along with it, but there are solutions to it today.

I don't know anyone who doesn't have GI symptoms of some sort or another. Personally, I couldn't even eat a few bits of steak but it's probably more to do with swallowing than anything else. Right now one could say that I live on a "soft" diet....I'm not even supposed to eat veggies. Sadly, I love them. However, in my age group this is a common complaint and no, surgery didn't help in the least. Things are even worse. Yours Lenora

 

[Nord Wolf]

@Jyoti - I had a bunch of testing done in March and April this year. Many wee through neurology, and about half were ordered by a autonomic specialist in the neurology department. Similar to what you experienced, I failed some of the autonomic tests and was completely blown off as if everything was normal. I clearly present with PoTS, severe Dysautonomia, etc, etc, etc... my history fits all the profiles, my daily symptoms tag every box in every chart, and so on. I was beyond irritated.

Luckily my PCP has been a huge advocate for me within the last 7 years and said even if neurology doesn't take is seriously, we will look to treat it on our own. I'm not a fan of pharmaceuticals, but we've tried so much under the sun and moon with zero lasting results. So, he is in the process of prescribing Ivabridine for a trial run. I've taken propranolol for a while, which lowers my heart rate and ANS hyperactivity, but I have lung damage and propranolol aggravates respiratory issues. So after a few days of propranolol, which begins to allow my body to catch up, I need to lay off because I can't breathe, and then I quickly slide backwards again.

I don't like to get my hopes up, but I'm interested to see if the Ivabridine does anything. Did you ever take it on its own, or only in combo with the other two meds?

 

[Jyoti]

@Nord Wolf --I have been reading about your trekking this spring, from doctor to doctor, lab to lab. Only to arrive at--miraculously!--some actual results. Or at least a bit more clarity, which is valuable in and of itself when we swim in the constant murk of this illness.

I think it is a great idea to try Ivabradine. I tried Midodrine and it did nothing for me, Propranolol put me in bradycardic territory all the time. I was hopeful about Ivabradine (and its 'funny channel' action) but found that it also dropped my already low resting heart rate uncomfortably. I now take Mestinon, which has actually been very helpful in small doses--way smaller than prescribed. It seems that in my case messing around with heart rhythms is not salutary.

But---I guess I am saying that I am really glad that I went through the experimentation. Seems like one of the handful of drugs commonly prescribed for dysautonomia works for a lot of people, but it is very individual. You've tried Propranolol but the side effects are too much for your lungs. Maybe the Ivabradine will do some good, but even if it doesn't, I'd say stay open to the other options. I am not a big fan of pharmaceuticals either, but I thought--I have a diagnosis (or six) and there are some treatment options so I might as well try. I'd feel really really stupid if it were revealed to me at some later date that I could have felt significantly better and turned up my nose at the opportunity.

By the way--have you got a source for the Ivabradine? I got mine from a Canadian pharmacy, which worked well and was quite reasonable price-wise.

Good luck. I hope it brings you some relief and some hope.

 

[Nord Wolf]

@Jyoti -
Yes it has been a ride this spring for sure. Actually, it has been a ride since contracting H1N1 in February, and after recovering (as much as I could) running the doctor and testing gauntlet. I’ve yet to rebound from any of it. I’m still slogging through the cold mud, spend most of my time in bed or on the couch in spaced-out land waiting for actual spring. So far, here in the mountains it has primarily been cool, damp, dark with heavy cloud cover, and daily rain. I think Saturday the sun is supposed to shine all day. I’ll believe that when I see it!

My heart rate is opposite of yours - high. The type of PoTS and dysautonomia I deal with involves drastic rises in both heart rate and blood pressure, and when the BP comes back down, the HTR is still going up. Even my resting HTR leans on the high side.

My doc just sent in a script for lvabradine. He wants me taking 5mg twice per day. If my body handles it, then after 2-3 months we will assess. So, I’ve stopped taking LDN and Propranolol as of today. Hopefully I can get the Ivabradine tomorrow and start taking it on Saturday.

Ivabradine source… my doctor just ordered it through the local pharmacy, Kinney Drugs. My insurance will cover 90% of its cost. Could you not get yours through a local pharmacy?

I fully agree with your views on giving things a go. I don’t like the big pharma world, or the behind the scenes agendas they run with, but when we are in the conditions we are in, we have to try. Like you said, we won’t know unless we give it a go. Here’s hoping for the best - for all of us!

 

[Jyoti]

My doc just sent in a script for lvabradine. He wants me taking 5mg twice per day. If my body handles it, then after 2-3 months we will assess.

Best luck with this!

My insurance will cover 90% of its cost. Could you not get yours through a local pharmacy?

It is off-label for POTS, so while I could get it, it was wildly expensive. Maybe you have a diagnosis that is FDA approved? Or maybe something has changed in the last year or so.

My heart rate is opposite of yours - high. The type of PoTS and dysautonomia I deal with involves drastic rises in both heart rate and blood pressure, and when the BP comes back down, the HTR is still going up. Even my resting HTR leans on the high side.

Subsets. Always--subsets of all the things we deal with. My heart rate actually goes pretty damn high, but when I am supine it drops. And drops. But I know the experience of high BP and high HR is really different in some ways. So maybe that is good news? Maybe what didn't work for me, will work well for you.

 

[Nord Wolf]

It is off-label for POTS, so while I could get it, it was wildly expensive. Maybe you have a diagnosis that is FDA approved? Or maybe something has changed in the last year or so.

I didn't realize my doc had to fill out a form to request insurance coverage. He said the only question he answered No to was the ejection less than 35%. So now we wait... and hope they decide to cover it. Otherwise, yes we looked it up and found it would cost $500.00 per month!
Wait for how long... who knows with insurance.

 

[Jyoti]

Well....in case you are interested, and while you wait, you could check this out: https://www.northwestpharmacy.com/ It is where I got my Ivabradine and while I can't recall the cost, it was very reasonable. The process was a tad cumbersome, but it did work.

But we will hope your insurance pays for it. That would not only be simplest, it would also be correct, since you (and we all in the US) pay for insurance so that you can access the services and drugs that YOU need.

 

[hapl808]

That would not only be simplest, it would also be correct, since you (and we all in the US) pay for insurance so that you can access the services and drugs that YOU need.

We pay for insurance to enrich a small group of people in healthcare and politics, no other reason. Always amazes me that every other civilized country on earth manages to provide healthcare - at a cheaper cost AND with better outcomes. But the US insists that our byzantine system is the only one. It sucks for people whose conditions are well understood and treatable - it's truly cruel and unusual punishment for anyone outside of that cohort.

 

[Jyoti]

@hapl808 -- absolutely true. I stand corrected, or rather, note that the macro--or systemic--analysis is more comprehensive and therefore more useful in many cases than the personal.

 

[Judee]

I now take Mestinon, which has actually been very helpful in small doses--way smaller than prescribed. It seems that in my case messing around with heart rhythms is not salutary.

Does it lower your heart rate w/o lowering your blood pressure, do you know? I have been taking Metoprolol Succinate ER and it does lower my hr but also my bp making my heart and lungs hurt more.