POTS relief - could it be?

[Gingergrrl]

Hey @Gingergrrl, thank you for your thoughtful comments, I appreciate the words of caution. That's terrific that you can go to a mainstream doctor/clinic and get autonomic testing with a neurologist. Mine didn't seem interested. I'd be very interested to see what tests they run. Sorry to hear about the MCAS/anaphylaxis, that's terrific that most was covered by insurance.

@SpecialK82 I wanted to reply b/c I think my initial response was unclear the way I wrote it. I am going up to the Autonomic Disorders Clinic at Stanford and am not seeing a mainstream doctor in my city. It is the only clinic of it's kind on the west coast and I waited 5-6 months to get the appt and it is a seven hour drive for us each way. So I am making a similar trip to what you would be doing b/c I feel it is worth it.

What I was trying to express is that Stanford's Clinic involves seeing an autonomic neurologist and four hours of testing, blood tests, etc, and I know what all possible tests are- there is no secrecy. I will not be allowed to do all of the tests b/c of the medications that I am on so they will modify it to let me do whichever ones the doctor feels are appropriate.

The comparison to my hospitalization last year is that even when I was inpatient for a week for MCAS seeing various specialists, having tests, IV meds, food, etc, my portion after insurance was a fraction of $6600. So for an outpatient program run by two optometrists, I would be very cautious to spend that much money and want to know exactly what I would be getting.

I do believe, although I don't think I read it anywhere, that her answer to certain problems with the vagus nerve and underactive parasympathetic nervous system are the supplements that she has developed. She does say in the videos, that she does not take an income on the supplements, except for the 6% affiliate fees from Amazon. Of course this can be construed as still an income, lol.

Whether she takes an income from the supplements or not (which I suspect she does), it sounds like after all your testing is done, the treatment plan will be to take her supplements. Whereas if you go to a clinic like Stanford or Vanderbilt (as examples) they are not promoting their own supplements and the treatment plan will vary for each individual depending what they find. There is no guarantee that Stanford can help me but I am confident that they will do their best.

Her treatments are supposed to treat the root problem (vagus nerve and parasympathetic nervous system) instead of treating the symptoms. If that be the case, I'm all for it. I am still nervous about it all.

I guess I'd want to know how she assesses that is the root of the problem since any random person can buy the supplement on Amazon? I am not anti-supplements in any way and have taken plenty in the last few years. In my own case, I have had toxicity reactions to meds that affective the cholinergic system and would not tolerate her supplements so I'd want to know what other options she had prior to committing that much money.

Also agree with what @Sushi said above.

 

[CantThink]

Thanks for posting this @SpecialK82

I just got finished watching the videos.

 

[CantThink]

The last video mentions the clinic a little:

I believe (could have some of this wrong as I just am trying to remember off the video) it is run by a select group of physicians and not just her and her husband.

They try to prequalify patients so will aim to take on the the ones who they'd most likely help - I guess ones who most fit the Driscoll theory and symptoms.

They will only take on only 1-2 patients for each week (!!!). IMO hence the high cost, as you are pretty much hiring X amount of physicians for a week rather than an hour or day or whatever.

The supplement incime is 6% affiliate fees if bought through Amazon.

You can try the supplements without attending the clinic. In fact if you read around and go on the Pretty Ill forum, I reckon you can probably figure out what to take in order to try it.

 

[jimells]

I don't mean to disrespect Dr Diana or wish her ill will, but I can't help thinking that Dr Grubb's group at the University of Toledo would be interested to hear that she has developed an effective treatment for POTS.

Those folks have been at it for decades, and they still struggle to find effective treatments for many patients. Maybe they would help her set up a pilot study and get it published - anybody can get published in the open access journals, for far less money than they take from just one patient.

p.s. this is the best paper I have come across on hyperadrenergic POTS, the kind I have:

http://www.ncbi.nlm.nih.gov/pubmed/21947988

 

[SDSue]

I’ve been milked dry by too many physicians who hawk useless supplements, so I fully understand the concern and need for caution when approaching new treatments. I do think, however, that I might offer a different perspective on Dr. Driscoll, having trained with her and known her for over 30 years.

You will be hard pressed to find a more open, honest, compassionate, motivated, curious person, doctor or not. The way Diana conducts her affairs, personally and privately, before and after getting sick has been above reproach and she is highly respected in the optometry community.

I personally referred to POTS Care Clinic a completely disabled young lady with POTS who had been failed by the Mayo Clinic Rochester and others for over 10 years, during which she tried every known medication and lifestyle change. That patient is now back to college and living independently.

You’ll notice that Driscoll’s clinic is not called “We Cure Everything Care”. It’s called “POTS Care” for a reason. And yes, they do pre-qualify patients - making every effort to only see those they believe they can help.

The supplement offered by Driscoll is backed by ten years of extensive research (see here) and a lot of anecdotal evidence. Unfortunately, anecdotal is as good as it gets early on with any treatment, particularly with ME, POTS, etc. That hasn’t stopped most of us from pursuing everything from Inosine and methylation to chelation and infrared saunas.

I believe the doctors are her and her husband, who is also an optometrist.

Drs. Diana and Richard Driscoll, together with Dr. Stevan Cordas, DO, are the founders of POTS Care. Because experience in these conditions is so rare, they often consult with specialists outside of the local area. All of the consults are included in your fee.

What tests can two optometrists legally run and interpret that take a week?

Optometrists can, and many do, order everything from blood to CAT Scans. After being failed herself by “experts” all over the country, Diana had no choice but to dive in, order and interpret appropriate testing, and solve her family’s medical mysteries. I can think of no better teacher than desperation and personal experience. Fortunately, she has the licensure that enabled her to do so.

Whether she takes an income from the supplements or not (which I suspect she does), it sounds like after all your testing is done, the treatment plan will be to take her supplements. Whereas if you go to a clinic like Stanford or Vanderbilt (as examples) they are not promoting their own supplements and the treatment plan will very for each individual depending what they find. There is no guarantee that Stanford can help me but I am confident that they will do their best.

Hi Ginger! Why do you suspect that she takes income?

I don't mean to disrespect Dr Diana or wish her ill will, but I can't help thinking that Dr Grubb's group at the University of Toledo would be interested to hear that she has developed an effective treatment for POTS.

Like it or not, medical research is highly competitive and huge egos are everywhere. Doctors do not share willingly until they’ve published, as we all know from several ME studies. Driscoll has shared selflessly during her journey and research, which I find commendable. If others aren’t paying attention, that’s their fault not hers. It’s not as if the Vagus nerve has never been mentioned before - she simply figured out a way to affect the vagus using neurotransmitters at the beginning of the problem instead of drugs that affect the end result. I’d imagine the docs at these major dysautonomia clinics aren’t exactly thrilled by a little old optometrist in Texas who put many pieces together for the first time.

I’m willing to bet anyone of us who’s been sick for any length of time has wasted well over $6,600 on worthless treatments, tests, and supplements. I know I have. Yes it’s a lot of money, but for those who fit the category, this could be a lifesaver. I hate to see those people discouraged without all the facts. If I could withstand travel, I’d go in a heartbeat.

 

[jimells]

Like it or not, medical research is highly competitive and huge egos are everywhere. Doctors do not share willingly until they’ve published,

I'm not for a moment suggesting that their patients don't improve, because I have no evidence one way or the other. And that's my point. They say their treatment works, then prove it, just like we are demanding data from the PACE People.

Professor Edwards has described on the forum how he organized and published a pilot study demonstrating that Rituximab could be effective for RA. As I recall, he did it all on his own, even financing a very expensive drug. I readily acknowledge that Professor Edwards is an exceptional researcher, but surely other folks can learn from his example, and move the science forward for everybody?

In God We Trust, All Others Bring Data

 

[Gingergrrl]

Hi Ginger! Why do you suspect that she takes income?

A former friend told me this plus some other pretty strong warnings but that is neither here nor there. I wish nothing ill toward Dr. Diana, nor anyone who tries this program, and have nothing further to say about it.

 

[Old Bones]

Dr. Driscoll says she can pick 90% of cases by looking at detailed images of the fundus of their eyes, not sure if that is just for those with intercranial pressure causing symptoms. Most optometry practices can photograph the back of your eye, I wonder if any optometrist can see the same thing if they know what their looking for.

I took a printout of the transcript for the interview with Doctor Driscoll posted on the Low Histamine Chef website to my ophthalmologist appointment last week. I had highlighted the segment that dealt with looking at detailed images of the fundus of the eyes. The doctor reviewed the document before my brief appointment, and although she didn't comment on it, she did ask to keep it. So, perhaps it was worth her further consideration.

I, too, am intrigued by Doctor Driscoll's diagnosis and treatment. However, with respect to the $6600 price tag, we Canadians are currently paying an extra 47 percent premium to change Canadian$ to US$. This includes a currency exchange transaction fee. Add in travel costs, and it would be even more unaffordable.

 

[IreneF]

Have you published your results in the biomed literature?

 

[DrDiana]

It may be important for others to understand that there is no "standard treatment" involved in POTS Care. No two patients are exactly alike, although there are a fair number of overlapping aspects that have been missed in the past (like abnormal intracranial pressure, vagus nerve problems, underactive parasympathetic nervous systems, vascular inflammation, etc). I strongly believe we must consider everything, and we must include these commonly missed problems.

We've seen some interesting cases, including exacerbation of POTS from metabolic acidosis, reactive hypoglycemia, and a poor patient who had been treated for years as a "chronic fatigue" patient, but we located extraordinarily high IgE levels due to an active parasite. Often, our diagnoses of "chronic fatigue" or even "POTS" can result in our doctors offering symptomatic treatment prematurely -- the search for issues contributing to illness often stops. I believe that is a tragic mistake.

We had two patients back-to-back recently -- one had a resting heart rate (even in her sleep) of 130 bpms. The other patient had a resting heart rate of 47 bpms, yet both had "POTS" and chronic fatigue. You can bet that they had different problems, requiring different treatments.

As far as publishing goes, yes, we would like to publish case studies to get some of this information out. Meanwhile, we have some research results on the research tab at POTSCare.com, including a couple of peer-reviewed abstracts. It's been quite a long journey....

 

[kangaSue]

@DrDiana, Just wondering who is likely to benefit most from your supplement Parasym Plus.

I saw you said that you don't have an autoimmune cause complicating your vagus nerve dysfunction because you only failed a tilt table test in an autonomic function test panel, does that mean if I have failings in tilt table test (orthostatic hypotension) , QSART and TST tests, possibly because of Autoimmune Gastrointestinal Dysmotility, a restricted form of Autoimmune Autonomic Ganglionopathy, then I won't benefit from Parasym Plus. I tried Mestinon but, like most drugs with me, that ended in bad gut pain (mast cell activation?) but did start me sweating in response to heat again.

 

[kangaSue]

I took a printout of the transcript for the interview with Doctor Driscoll posted on the Low Histamine Chef website to my ophthalmologist appointment last week. I had highlighted the segment that dealt with looking at detailed images of the fundus of the eyes. The doctor reviewed the document before my brief appointment, and although she didn't comment on it, she did ask to keep it. So, perhaps it was worth her further consideration.

I, too, am intrigued by Doctor Driscoll's diagnosis and treatment. However, with respect to the $6600 price tag, we Canadians are currently paying an extra 47 percent premium to change Canadian$ to US$. This includes a currency exchange transaction fee. Add in travel costs, and it would be even more unaffordable.

My poor old Aussie dollar is worth bugger all too!!!

 

[kangaSue]

We do pre-qualify patients (we do not see autoimmune autonomic gangliopathy, POTS due to ALS, Parkinson's, MS, for example) and they need to have been evaluated by a cardiologist, at a minimum (even qualifying questions are personalized to some degree).

@DrDiana, you singled out autoimmune autonomic ganglionopathy as an exclusion criteria, I'm interested to know if you have to turn down many cases on this criteria as the medical literature suggests it to be extremely rare yet I can easily find dozens of cases with a quick google search. I assume people come to you already having tested positive to a3-nAChR antibodies to be excluded from your program.

 

[jimells]

http://www.potscare.com/research/

Genetic Disease Investigators and Dr. Diana Driscoll, President, were the first to reveal hidden abnormalities in many patients such as:
[snip]

– joint hypermobility or Ehlers Danlos syndrome

That seems like a rather bold claim. Dinet.org has had information on POTS and EDS on their website for many years. In fact, it is where I first read about POTS (and EDS) back in 2009.

 

[Sushi]

Dinet.org has had information on POTS and EDS on their website for many years. In fact, it is where I first read about POTS (and EDS) back in 2009.

And my doctor told me about the connection in 2006.

 

[Gingergrrl]

The POTS/EDS/MCAS trifecta is pretty well established (even though I do not have the EDS part myself.) It is not new info!

 

[DrDiana]

@DrDiana, you singled out autoimmune autonomic ganglionopathy as an exclusion criteria, I'm interested to know if you have to turn down many cases on this criteria as the medical literature suggests it to be extremely rare yet I can easily find dozens of cases with a quick google search. I assume people come to you already having tested positive to a3-nAChR antibodies to be excluded from your program.

We've turned down two thus far -- one was a physician, interestingly enough. These patients usually do not have fatigue -- one of the first things we noticed in his prequalifying questions that told us to dig deeper.

 

[DrDiana]

http://www.potscare.com/research/


That seems like a rather bold claim. Dinet.org has had information on POTS and EDS on their website for many years. In fact, it is where I first read about POTS (and EDS) back in 2009.

You are right! That should have read "EDS in conjunction with the above" (and has been corrected). For over a decade, doctors have believed that POTS in conjunction with EDS was due to "gradual laxity of vessels". That is what my kids and I were told, despite developing POTS rather abruptly after infections (and despite not having the vascular form of EDS which affects vessels). After years of study, we identified a propensity for high intracranial pressure, vascular abnormalities, vagus nerve problems, and inflammation (initially thought to be mast cell activation -- later corrected to be inflammation involving histamine). After releasing that information, we focused on searching for the causes of such abnormalities, and most importantly, how to effectively treat them.

Thank you for pointing out the error.

 

[DrDiana]

The POTS/EDS/MCAS trifecta is pretty well established (even though I do not have the EDS part myself.) It is not new info!

You know what I think got missed in many of us, was that hyperadrenergic POTS was suspected to often involve mast cells because many patients flushed (and doctors publishing the data in 2005 found high tryptase levels in many patients) -- HOWEVER, we found that the majority of patients had normal tryptase and we needed to consider all histamine-producing cells to look for answers. We also needed to consider the possibility that in some patients mast cell involvement could be secondary to 'something else', and unless we located that 'something else', we could treat mast cell activation, but the patients would continue to be ill. We had to consider, "what could be activating the mast cells" in addition to "what other histamine-producing cells could be problematic"? I think these questions are usually forgotten, and it is accounting for continued illness in many.

 

[DrDiana]

I'm not for a moment suggesting that their patients don't improve, because I have no evidence one way or the other. And that's my point. They say their treatment works, then prove it, just like we are demanding data from the PACE People.

Professor Edwards has described on the forum how he organized and published a pilot study demonstrating that Rituximab could be effective for RA. As I recall, he did it all on his own, even financing a very expensive drug. I readily acknowledge that Professor Edwards is an exceptional researcher, but surely other folks can learn from his example, and move the science forward for everybody?

I agree -- results are critical, and we'd like to release case studies. Meanwhile, a few aspects of this condition for many people can be addressed with their own physicians, based on common sense. For example, about 70% of patients so far at POTS Care have gotten relief for many symptoms when suspected high intracranial pressure is treated. Rather than prove their pressure is high with lumbar punctures (many of us do not heal well after these punctures), we can look at signs, symptoms and response to treatment. We can't publish this because of the lack of objective measurements (lumbar punctures), but we can and should treat this based on presentation.

Low acetylcholine or vagus nerve problems must be identified by presentation because there is no blood test for this. If a patient has numerous symptoms/signs of low acetylcholine and responds to treatment, is this sufficient for the patient? I'd say 'yes'...


Thanks!