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Bedridden for 11 years, he discovered a surgery for his adrenal condition

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Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#111

Doctors were baffled. Treatments didn't help. And Lindsay eventually realized that if he wanted his life back, he would have to do it himself. This applies to almost any health problem you might encounter in the US. It's rare to find a doctor who actually cares and even more rare to find one that will dig deep to help you. One of the greatest lies ever told is that you can trust your doctor and that there isn't more…

The problem probably lies somewhere between afraid of getting sued and not wanting to shake the medical groupthink apple cart.

Last year I was suffering through a bout of strange fatigue that came about right after a mysterious throat infection. There were days I could barely go up the stairs without being winded or without assistance. I googled around and started reading about Chronic Fatigue Syndrome (CFS) and found this large, shadow community of millions of sufferers. Many of these people have had these symptoms for years, and when they go to the doctor they are simply told "It's all in your head," and if lucky, they'll run some tests and prescribe something that gives them temporary relief.

I asked my cousin who is a doctor about his opinion on CFS, and he told me it was difficult to diagnose and even harder to treat. The most they will do is refer you to a specialist or even psychiatrist.

After a couple months my fatigue went away on its own. But I did find that creatine helped. And this has been backed by others in the CFS community who have stated that eating raw meat relieves their symptoms (natural creatine in meat is destroyed once cooked). But a doctor would never tell me that, because if there isn't conclusive proof from a medical journal and/or a big pharma drug to prescribe, they are either too afraid or unwilling to say anything.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#112

Wow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabetes complications", due to type 1 diabetes. I was always suspicious it was something else, as it started when I was diagnosed with type 1 diabetes at age 5. I was constantly scavenging the medical literature when I was in college. At age 22, it got out of contro…

With immune therapy, did that help with your type 1 diabetes at all?

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#113
post #104
post #99

Earlier quoted context omitted.

I don’t think your citations are sufficient evidence to discredit the CDC and NIH at this time.

The National Guideline Clearinghouse (NGC) is a federal agency of the United States Department of Health and Human Services responsible for providing the most up-to-date clinical guidelines to physicians. The NGC also removes clinical guidelines that are no longer relevant, that do not meet the Institute of Medicine’s standards for clinical practice guidelines, including a systematic review of the evidence, or that h…

You should probably cite articles that you copy from:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938692/

Also, the reason the guidelines were removed from the NGC is that they hadn't been revised in 5 years.

https://lymediseaseassociation.org/news/official-word-on-ids...

And the new draft guidelines from the Infectious Diseases Society of America doesn't appear to agree with your position either.

https://www.idsociety.org/practice-guideline/Lyme-Disease-Gu...

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#114

Wow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabetes complications", due to type 1 diabetes. I was always suspicious it was something else, as it started when I was diagnosed with type 1 diabetes at age 5. I was constantly scavenging the medical literature when I was in college. At age 22, it got out of contro…

With immune therapy, did that help with your type 1 diabetes at all?

No. My body produces virtually no insulin. A C-Peptide test was performed in the past 10 years, when I was receiving immunomodulatory treatment, and showed no traceable C-Peptide in my body. Hence, my body is either producing none to extremely low levels of insulin.

By the time you are diagnosed with type 1 diabetes, around 90% or so of the islet cells (insulin producing cells) are eradicated, supposedly.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#115

Earlier quoted context omitted.

With immune therapy, did that help with your type 1 diabetes at all?

No. My body produces virtually no insulin. A C-Peptide test was performed in the past 10 years, when I was receiving immunomodulatory treatment, and showed no traceable C-Peptide in my body. Hence, my body is either producing none to extremely low levels of insulin. By the time you are diagnosed with type 1 diabetes, around 90% or so of the islet cells (insulin producing cells) are eradicated, supposedly.

Sorry to hear that. I was hoping for you that the new therapy you were receiving gave your pancreas time to heal too.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#116

Earlier quoted context omitted.

No. My body produces virtually no insulin. A C-Peptide test was performed in the past 10 years, when I was receiving immunomodulatory treatment, and showed no traceable C-Peptide in my body. Hence, my body is either producing none to extremely low levels of insulin. By the time you are diagnosed with type 1 diabetes, around 90% or so of the islet cells (insulin producing cells) are eradicated, supposedly.

Sorry to hear that. I was hoping for you that the new therapy you were receiving gave your pancreas time to heal too.

Thank you. It's OK. I have lived a good life with T1D and it's been the only life I've really known (diagnosed at age 5). There are people who do well with it, long term. I just am just trying to roll with all of this and not look back :-).

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#117

Earlier quoted context omitted.

No. Adrenal fatigue is little more than alt-med jargon for what the average HNer would call burnout. The invocation of adrenal dysfunction is, to put it politely, poetic license.

That’s a bit harsh. While I agree that adrenal fatigue and other catch-all diagnoses used by “alternative medicine” aren’t based in science I do think we need to have an open mind and consider the possibility that people are dealing with an actual medical issue that we simply haven’t isolated/identified yet. To casually dismiss a person’s symptoms as all in their head is just as dangerous as trying to treat their sym…

I agree completely. There is absolutely a real need here, but alternative medicine is exploiting it instead of addressing it.

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#118
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Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#119

Wow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabetes complications", due to type 1 diabetes. I was always suspicious it was something else, as it started when I was diagnosed with type 1 diabetes at age 5. I was constantly scavenging the medical literature when I was in college. At age 22, it got out of contro…

That's quite inspiring. Do you mind connecting via email? (Not a media request; just to learn and exchange some ideas)

Re: Bedridden for 11 years, he discovered a surgery for his adrenal condition

#120
post #59

> Lindsay suspected his body was producing too much adrenaline. He knew of a drug called Levophed, which is approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is basically an injection of noradrenaline, which counters the symptoms created by excess adrenaline. This is incorrect. norADRENALINE is a more specific version of ADRENALINE made in different part…

> I don't have numbers to counter this off the top of my head, but congenital adrenal hyperplasia is a rare syndrome, but still common enough that it is taught to every medical student and tested on our boards repeatedly.

You are confusing Congenital adrenal hyperplasia (ie 21 alpha hydroxylase deficiency), the bane of every 3rd year med student and adrenal medullary hyperplasia, a much rarer condition (I don’t recall it ever coming up during medical school).

Congenital Adrenal hyperplasia involves the cortex where the corticosteroids are produced. Epinephrine and norepinephrine are catecholamines produced by the medulla. AMH is more similar to pheochromocytoma though.

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