Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

Functional doctor suggestion for ITP 2 years 1 month ago #67744

  • acosta02151
  • Offline
  • Posts: 22
  • Thank you received: 0
I saw a functional/homeopathic doctor to discuss my chronic thrombocytopenia (currently at 53 with no treatment). After reviewing my medical files and conducting an examination, his suggestion was this:
1. Visit a nutritionist who would supervise a six week liver detox
2. Get IV infusions of glutathione

He said I would feel sick at the beginning. He feels my spleen/pancreas is overactive as well as my immune system.
I am very tentative. Thoughts??????

Please Log in or Create an account to join the conversation.

Functional doctor suggestion for ITP 2 years 1 month ago #67755

  • MelA
  • Offline
  • Posts: 887
  • Karma: 2
  • Thank you received: 286
www.hopkinsmedicine.org/health/wellness-and-prevention/detoxing-your-liver-fact-versus-fiction
"Though liver cleanses are packaged to claim that they’re a cure-all for daily liver health and overindulgence, Johns Hopkins hepatologists do not recommend them. “Unfortunately, these products are not regulated by the FDA, and thus are not uniform and have not been adequately tested in clinical trials,” explains Woreta."

I've not heard that detoxing the liver or having an IV of glutathione has helped anyone with ITP increase their counts . Actually I had to look up what glutathione was.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: acosta02151

Please Log in or Create an account to join the conversation.

Functional doctor suggestion for ITP 2 years 1 month ago #67765

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
acosta, AFAIK Glutathione IV injection is most common for Alzheimer's patients. See 'apoe4.info' website for more info.

For similar (antioxidant) reasons, I take NAC over the counter supplement which helps elevate one's Glutathione level, but not as well as IV does. That is, I take NAC to help combat Shingles/Chickenpox virus, which I believe triggered my ITP and causes my ITP to be chronic.

I think Glutathione IV and NAC can also help combat Epstein Barr virus, which I believe is the most common trigger for the ITP population and causes ITP to be chronic in those cases.
The following user(s) said Thank You: acosta02151

Please Log in or Create an account to join the conversation.

Functional doctor suggestion for ITP 2 years 1 month ago #67768

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1901
  • Karma: 7
  • Thank you received: 546
"Epstein Barr virus, which I believe is the most common trigger for the ITP population and causes ITP to be chronic in those cases".
Hal do you have an evidence base for this?
The following user(s) said Thank You: MelA

Please Log in or Create an account to join the conversation.

Functional doctor suggestion for ITP 2 years 1 month ago #67771

  • acosta02151
  • Offline
  • Posts: 22
  • Thank you received: 0
That is very interesting information. I have heard that Epstein Barr can be the culprit in many cases of ITP. My father and my sister also have low platelets, but their numbers jump around, whereas mine have never improved. Is it possible that I had mono and never knew it or it there the possibility that the virus could be in my system, not manifesting as an illness? The concept of glutathione and NAC is very interesting. I am afraid to go through the process as I fear my platelets could dip even lower than they are now. Thank you very much.

Please Log in or Create an account to join the conversation.

Functional doctor suggestion for ITP 2 years 1 month ago #67772

  • acosta02151
  • Offline
  • Posts: 22
  • Thank you received: 0
That is very interesting information. I have heard that Epstein Barr can be the culprit in many cases of ITP. My father and my sister also have low platelets, but their numbers jump around, whereas mine have never improved. Is it possible that I had mono and never knew it or it there the possibility that the virus could be in my system, not manifesting as an illness? The concept of glutathione and NAC is very interesting. I am afraid to go through the process as I fear my platelets could dip even lower than they are now. Thank you very much.

Please Log in or Create an account to join the conversation.

Functional doctor suggestion for ITP 2 years 1 month ago #67776

  • acosta02151
  • Offline
  • Posts: 22
  • Thank you received: 0
You make a very good point regarding non regulation by the FDA. Thank you!

Please Log in or Create an account to join the conversation.

Functional doctor suggestion for ITP 2 years 1 month ago #67831

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245

"Epstein Barr virus, which I believe is the most common trigger for the ITP population and causes ITP to be chronic in those cases".
Hal do you have an evidence base for this?

No, nothing.
When I say 'I believe' the presumption is that no one else in the world agrees with me. Else, to be convincing, I would have included/mentioned them as supportive evidence.

When I was at the PDSA conference this past summer in two group sessions I asked the ITP doctor specialist about EBV, Shingles, and Flu being triggers for ITP. That Flu virus triggered ITP is non-chronic. That EBV & Shingles triggered ITP are lifelong viruses and thus cause chronic ITP. Both times I asked the response was something like: 'there is some of that going on'. But what followed surprised me. Both doctors added Cytomegalovirus (CMV) virus to my virus list. This is HHV-5.
en.wikipedia.org/wiki/Herpesviridae#Human_herpesvirus_types

As shown in the Wiki table, EBV hides in B cells. CMV hides in monocytes and possibly other places. Because there is no visibility about who here does and who does not have CMV, I can only speculate about how CMV triggered ITP fits into the ITP puzzle. LOL, and here it goes. From a treatment standpoint perhaps CMV is much like EBV. Except with CMV, Rituxan does not cause remission. Because Rituxan affects B cells but doesn't affect monocytes. But, who knows.

On a somewhat related note. After reading this about EBV and bone marrow on Wiki:
en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus
"The site of persistence of EBV may be bone marrow. EBV-positive patients who have had their own bone marrow replaced with bone marrow from an EBV-negative donor are found to be EBV-negative after transplantation"
And noticing that many folks who have row 4 treatments response in my ITP table start out as row 1 only. I wonder if EBV and Shingles together may be required for the body to produce antibodies against megakaryocytes (row 4).

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo