Strange CNN article on Dysautonomia Patient

[yogini]

I am not sure what to think about this article.  Glad the patient is better and helping people but doesn't sound totally medically accurate. 

 

https://www.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html

This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself

 

[Pistol]

Hmmmm - norepinephrine drip, huh! Who would have thunk!

[bombsh3ll]

I have heard of noradrenaline infusions being used before on people with severe orthostatic hypotension. 

This is certainly interesting and I am glad he has put his story out there. Of course, this will not be the answer for most, and I am not sure if this was the case back then, or if he just didn't have access to testing, but now blood and urine catecholamines can easily detect AMH, even where adrenal scans are normal. 

Additionally, rather than searching for someone willing to perform the first human medullectomy, he could have just had bilateral adrenalectomies and taken steroid replacement, it would surely have been more straightforward, but then again he may have preferred to keep his adrenal cortices to avoid lifelong dependency on steroid tablets. 

However, to me the most important message from this story is to never give up looking for an underlying cause & treatment. 

B xxx

[Sushi]

7 hours ago, Pistol said:

Hmmmm - norepinephrine drip, huh! Who would have thunk!

For me the most effective treatment for OI was strattera, a norepinephrine reuptake inhibitor—perhaps the same principle? This is known to help some patients who are parasympathetic dominant as I am. The Dr. Coglan at UAB whom they mentioned, was Dr. Randy Thompson’s (dysautonomia specialist in Pensacola) doctor and mentor. At least the article talked about dysautonomia in the popular press!

[Guest KiminOrlando]

Yeah, someone just called me and told me they saw a cure for me on CNN. Lovely. 

[toomanyproblems]

Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed. They aren't producing any natural steroid anyway but my endocrinologist says for some reason they can almost always produce adrenaline. They aren't doing anything useful for me. Only bad. But no one would do the surgery I'm guessing. 

[Derek1987]

3 hours ago, toomanyproblems said:

Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed. They aren't producing any natural steroid anyway but my endocrinologist says for some reason they can almost always produce adrenaline. They aren't doing anything useful for me. Only bad. But no one would do the surgery I'm guessing. 

Would that even be safe to remove them? Wouldn't that make us more prone to fainting?

[yogini]

22 hours ago, bombsh3ll said:

I have heard of noradrenaline infusions being used before on people with severe orthostatic hypotension. 

This is certainly interesting and I am glad he has put his story out there. Of course, this will not be the answer for most, and I am not sure if this was the case back then, or if he just didn't have access to testing, but now blood and urine catecholamines can easily detect AMH, even where adrenal scans are normal. 

Additionally, rather than searching for someone willing to perform the first human medullectomy, he could have just had bilateral adrenalectomies and taken steroid replacement, it would surely have been more straightforward, but then again he may have preferred to keep his adrenal cortices to avoid lifelong dependency on steroid tablets. 

However, to me the most important message from this story is to never give up looking for an underlying cause & treatment. 

B xxx

He got dysautonomia a few years before me.  At the time of my diagnosis, there was already this forum and a few other forums that have been around for years.   Dysautonomia as a condition has been around for quite a while.  I could believe that he didn't get the right medial advice, but as soon as he made the connection to autonomic disorders, his story gets strange -- watch his Ted Talk.   We all have to take control of our healthcare and guide our doctors, but none of us have discovered this condition ourselves or a cure.

 

 

[yogini]

 

10 hours ago, toomanyproblems said:

Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed. They aren't producing any natural steroid anyway but my endocrinologist says for some reason they can almost always produce adrenaline. They aren't doing anything useful for me. Only bad. But no one would do the surgery I'm guessing. 

You should contact Doug Lindsey and see if he can connect you with his doctors. He says he's dedicated to helping other patients.  I'm not sure removing the adrenal glands make sense - but perhaps there is a way to slow them down that your doctor isn't aware of.

Edited July 28, 2019 by yogini
typo

[yogini]

15 hours ago, KiminOrlando said:

Yeah, someone just called me and told me they saw a cure for me on CNN. Lovely. 

 

15 hours ago, KiminOrlando said:

Yeah, someone just called me and told me they saw a cure for me on CNN. Lovely. 

Yes, infuriating.  

[bombsh3ll]

8 hours ago, Derek1987 said:

Would that even be safe to remove them? Wouldn't that make us more prone to fainting?

It definitely would if no steroid replacement was given, in fact it would be rapidly fatal. But many people have had both adrenals removed due to disease and are perfectly fine with adequate steroid replacement.

B xxx

[bombsh3ll]

13 hours ago, toomanyproblems said:

Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed.

The question is, is the excess catecholamine production coming from your adrenals or your sympathetic neurons. If it is the latter, removing the adrenals wouldn't help.

B xxx

[yogini]

 If your symptoms sound similar to the person in the article, it might make sense to look into this condition (or related conditions).  But even he kept his adrenals.

As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.

[toomanyproblems]

1 hour ago, bombsh3ll said:

The question is, is the excess catecholamine production coming from your adrenals or your sympathetic neurons. If it is the latter, removing the adrenals wouldn't help.

B xxx

Yes, I thought of that  That's why I haven't pursued it further. 

[toomanyproblems]

5 minutes ago, yogini said:

 If your symptoms sound similar to the person in the article, it might make sense to look into this condition (or related conditions).  But even he kept his adrenals.

 

They don't get into enough of the medical details in the article to know exactly what his problems were. He did keep the functioning part of his adrenal glands. But those parts aren't functioning in mine anyway. 

[yogini]

1 hour ago, toomanyproblems said:

They don't get into enough of the medical details in the article to know exactly what his problems were. He did keep the functioning part of his adrenal glands. But those parts aren't functioning in mine anyway. 

Article says he has bilateral adrenal medullary hyperplasia.

[RichGotsPots]

On 7/27/2019 at 4:49 AM, yogini said:

I am not sure what to think about this article.  Glad the patient is better and helping people but doesn't sound totally medically accurate. 

 

https://www.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html

This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself

 

In the articles about him and the Ted Talk he does not give the whole story, probably for saving time but if you search for him Youtube and google you can find out more details. I will try my best to fill in some blanks. For 4 years doctors did not diagnose him with dysautonomia and he had no computer only old medical textbooks from before he dropped out of a biology university program. He had one on Endocrinology and he read about the Autonomic nervous system and put it together himself that he had it. In the talk if kind of makes it sound like he discovered a new illness but in fact he just discovered he had Dysautonomia. He then got tested properly by Dr. Coghlan. Also before being tested properly while at a hospital stay they mentioned his adrenal dysfunction but gave him mixed messages about that. But he kind of focused on that. After Dr. Copland gave him a proper tilt table test with Catecholamines he discovered his Adrenaline was too high and his Noredrenaline was too low. The talk kind of makes it seem like he figured this out but it was mainly do to Dr. Coghlan. Next Dr. Coghlan tested for an Adrenal tumor and that came back negative so they were stumped by he was making so much adrenaline. So then after about a year they found a test (i’m Guessing a PET scan) that could look deeper into the adrenals an they found he had a lump inside the medulla of the Adrenal gland which was extremely rare. Dr. Coghlan eventually narrowed the diagnosis down. The problem at that point was there was no cure or surgery. This is where Doug was really his own hero. He research to prove there was surgery to remove the medula safely without damaging the rest of the gland.  Once he found Veterinary surgeries from decades ago and then convinced human surgeons to try it on him one at a time. He went from being bed bound to walking a mile after a few months but I think he was on a ton of medications too at the time. Then it took him awhile to do the 2nd gland and that recovery was worse, but eventually he could travel and walk and stand and got much better. I do not think he is 100% but way better. 

 

So it is accurate but does not give all all the details.

 

[Derek1987]

3 hours ago, bombsh3ll said:

The question is, is the excess catecholamine production coming from your adrenals or your sympathetic neurons. If it is the latter, removing the adrenals wouldn't help.

B xxx

I didn't know we could have adrenals from sympathetic neurons. I don't even know what that is. I'm scheduled to see a specialist who deals with the adrenal glands. Will they figure this out? 

I have lack of faith in doctors. My autonomic dysfunction specialist tells me I have hyperadrenergic POTS but never told me to get a scan of my adrenal glands to make sure I didn't have any tumors on them. It was actually my psychiatrist who told me it could be a possibility. So I got tested. No tumors.

[RichGotsPots]

4 hours ago, Derek1987 said:

I didn't know we could have adrenals from sympathetic neurons. I don't even know what that is. I'm scheduled to see a specialist who deals with the adrenal glands. Will they figure this out? 

I have lack of faith in doctors. My autonomic dysfunction specialist tells me I have hyperadrenergic POTS but never told me to get a scan of my adrenal glands to make sure I didn't have any tumors on them. It was actually my psychiatrist who told me it could be a possibility. So I got tested. No tumors.

The test for Hyperadrenergic POTS is not to scan your adrenals. You need to have your blood drawn during a tilt table test before and after upright for over 10 minutes. And that blood needs to be kept in a cooler and shipped that way to a lab like Mayo.  Hyper pots is higher than normal Norepinephrine when upright. Nothing to do with adrenaline. Norepinephrine (NE) is Noradrenaline, a similar but different neurotransmitter. Doug had lower NE and higher Epinephrine, that is what what he had was very very extremely rare. That is why he treated it with low doses of NE via IV.  He had the opposite of Hyperadrenergic POTS from what I understand him saying. With Hyperadrenergic POTS you want to reduce NE with alpha blockers like Clonidine. Since his was Adrenaline he wanted to have the low NE spike so that that it would compete with the adrenaline and low it. But that was tricky and not as effective as removing his medulla completely.

[yogini]

5 hours ago, RichGotsPots said:

In the articles about him and the Ted Talk he does not give the whole story, probably for saving time but if you search for him Youtube and google you can find out more details. I will try my best to fill in some blanks. For 4 years doctors did not diagnose him with dysautonomia and he had no computer only old medical textbooks from before he dropped out of a biology university program. He had one on Endocrinology and he read about the Autonomic nervous system and put it together himself that he had it. In the talk if kind of makes it sound like he discovered a new illness but in fact he just discovered he had Dysautonomia. He then got tested properly by Dr. Coghlan. Also before being tested properly while at a hospital stay they mentioned his adrenal dysfunction but gave him mixed messages about that. But he kind of focused on that. After Dr. Copland gave him a proper tilt table test with Catecholamines he discovered his Adrenaline was too high and his Noredrenaline was too low. The talk kind of makes it seem like he figured this out but it was mainly do to Dr. Coghlan. Next Dr. Coghlan tested for an Adrenal tumor and that came back negative so they were stumped by he was making so much adrenaline. So then after about a year they found a test (i’m Guessing a PET scan) that could look deeper into the adrenals an they found he had a lump inside the medulla of the Adrenal gland which was extremely rare. Dr. Coghlan eventually narrowed the diagnosis down. The problem at that point was there was no cure or surgery. This is where Doug was really his own hero. He research to prove there was surgery to remove the medula safely without damaging the rest of the gland.  Once he found Veterinary surgeries from decades ago and then convinced human surgeons to try it on him one at a time. He went from being bed bound to walking a mile after a few months but I think he was on a ton of medications too at the time. Then it took him awhile to do the 2nd gland and that recovery was worse, but eventually he could travel and walk and stand and got much better. I do not think he is 100% but way better. 

 

So it is accurate but does not give all all the details.

 

I agree he was his own hero,  and it is always inspirational to hear about anyone's recovery.  But I've read dozens of stories about people recovering from dysautonomia over the years -   all of whom were their own heroes, came up with their own treatments and went through  incredible struggles - but have never seen a story presented in this in this tone.  "I discovered a category of illnesses", "I invented a surgery", etc.  I found it a bit off-putting and strange.

[RichGotsPots]

3 minutes ago, yogini said:

I agree he was his own hero,  and it is always inspirational to hear about anyone's recovery.  But I've read dozens of stories about people recovering from dysautonomia over the years -   all of whom were their own heroes, came up with their own treatments and went through  incredible struggles - but have never seen a story presented in this in this tone.  "I discovered a category of illnesses", "I invented a surgery", etc.  I found it a bit off-putting and strange.

He should reword the part about inventing a category but he is telling it from his point of view at the time he gave the presentation in front of the Autonomic science community.  At that time he did not know better. He knows now. But maybe he lest it in for some hyperbole. I think it’s fine. The part about him inventing the surgery is kind of true and amazing. I doubt you know someone who knew they needed a surgery that did not exist for humans and they figured out how to get one in America no less. I do see what you are saying because it comes off a little like bragging but I just think he is trying to motivate people and again I’m fine with that.  He didn’t just figure out he had Diabetes and start taking insulin and get better. Or try a traditional POTS meds like Midodrine, florinef and a beta blocker and was cured. It took him 7 more year to be cured after he knew what he had.

[yogini]

16 minutes ago, RichGotsPots said:

He should reword the part about inventing a category but he is telling it from his point of view at the time he gave the presentation in front of the Autonomic science community.  At that time he did not know better. He knows now. But maybe he lest it in for some hyperbole. I think it’s fine. The part about him inventing the surgery is kind of true and amazing. I doubt you know someone who knew they needed a surgery that did not exist for humans and they figured out how to get one in America no less. I do see what you are saying because it comes off a little like bragging but I just think he is trying to motivate people and again I’m fine with that.  He didn’t just figure out he had Diabetes and start taking insulin and get better. Or try a traditional POTS meds like Midodrine, florinef and a beta blocker and was cured. It took him 7 more year to be cured after he knew what he had.

He has a rare adrenal condition called bilateral adrenal medullary hyperplasia so the POTS treatments would not work.  I'm guessing he is trying to promote his business and career as a motivational speaker through the hyperbole.  It is a lot more interesting to hear a speaker who "invented a surgery" than one who simply navigated his way through the system to improve from a rare illness. 

[RichGotsPots]

But he did invent the surgery lol you think he didn’t? That part is not exaggerated. Can you show where they were doing it before him? I know what he has and that caused his dysautonomia. So yes he needed that surgery that he invented he did not just navigate through the system it’s a lot more than that. 

[yogini]

1 hour ago, RichGotsPots said:

But he did invent the surgery lol you think he didn’t? That part is not exaggerated. Can you show where they were doing it before him? I know what he has and that caused his dysautonomia. So yes he needed that surgery that he invented he did not just navigate through the system it’s a lot more than that. 

 And you believe the used car salesman when he's the one that says he invited a surgery, lol????  Let's agree to disagree.

[RichGotsPots]

I still don’t understand why you think he didn’t invent the surgery? Just because you don’t believe him? Do you believe he had the surgery? Do you believe he has Bilateral Adrenal Medullary Hyperplasia? There are articles about his story that go back to 2010 where he is still homebound and he is trying to convince surgeons to do a surgery for it.