Must read: Immunomodulating Activity of a... - Cure Parkinson's

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Must read: Immunomodulating Activity of an Extract from Ashwagandha:

Farooqji profile image
14 Replies

Frank church has written an excellent article on the subject. Must read

journeywithparkinsons.com/2...

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Farooqji profile image
Farooqji
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Bolt_Upright profile image
Bolt_Upright

I am happy to see that Frank reached the same conclusion about Ashwagandha that I reached a year ago (Ashwagandha is an immune stimulator, PD is likely an autoimmune disease, and this combination is a bad thing).

I wish Frank had led with the conclusion he put at the end of his long article. I worry that some people will not read until the end and get the message that Frank STOPPED taking Ashwagandha:

"If you believe Parkinson’s is an autoimmune disorder, perhaps taking Ashwagandha (containing a substantial fraction of withanolides) could be detrimental to your condition by upregulating one’s immune system. However, hundreds and hundreds of years of people-with-Parkinson’s (PwP) have been treated with Ashwagandha, so what’s up? Many of my former students would tell me that their grandmother would add Ashwagandha powder into warm milk, and they would drink this mixture every morning. Is this Ashwagandha powder served in warm milk like the capsules I swallow with water?

My logic for taking Ashwagandha was related to its ability to reduce stress/manage anxiety and improve cognitive function. I have been taking 650 mg of Ashwagandha daily, and according to the manufacturer, it contains 2% withanolides (i.e., 13 mg withanolide glycosides per capsule). Whether or not this small amount of withanolides would be modulating my immune system is the real question. Although I believe in the historical significance and treatment strategies of Ayurvedic medicine, until I understand the autoimmune link between Parkinson’s and the immunomodulating function of withanolide in Ashwagandha, I have stopped taking Ashwagandha.*"

Despe profile image
Despe in reply to Bolt_Upright

Bolt,

Hubby has been taking it, too. As he complains about taking many supplements, a good pass to discontinue it. There are a few capsules left and once he finishes them, no more orders!

Despe profile image
Despe

Thanks, Farooq! Good work.

Have you been taking it, too?

Farooqji profile image
Farooqji in reply to Despe

Yes, I had been taking it for the last 3 years. one visible effect which I have noted is it's anti-stress and anti anxiety benefits. I have discontinued it for the last few months as I was suspecting it's contribution in my hair thinning and fall problem. But it's discontinuation didn't resolve the hair problem. I am now resuming ashwagandha. Please note that there is a lot of literature available on the therapeutic use of ashwagandha. You can read the book "the science of ashwagandha" which is freely downloadable from the internet

Despe profile image
Despe in reply to Farooqji

Thanks, I will do that. At the moment, hubby is fighting UTIs, and they are hard to beat. If only the doctors didn't misdiagnose and prescribe the wrong antibiotics. . .long story. . .

LeharLover62 profile image
LeharLover62 in reply to Despe

Sorry to hear it, hubbies dealt a lot with UTIs but been pretty clear the last year. He takes a strong cranberry supplement daily. In the past, we also used garlic (you can use raw garlic or supplements as a mild antibiotic). He tried Kirkland Biofilm defense but I was never sure whether that helped.

We also use home urine test strips and push lots of extra fluids any time he starts to test positive.

You need to watch them closely in men though as they can lead to sepsis and medical emergencies.

Sun_and_flowers profile image
Sun_and_flowers in reply to LeharLover62

Hi, have you heard of grapefruit seed extract? It seems to be really good for infections, might be worth investigating...

Despe profile image
Despe in reply to LeharLover62

He is on a combination of D-Mannose with cranberry extract. Currently, besides that, he is on antibiotics (😞). The difference is that he's been using indwelling catheter since last July as he can't void. Did try all the tests to see if he could void on his own, but failed all of them. Local doctors are not worth a dime, so I made an appointment with Vanderbilt Urology (Dr. Miller who is highly recommended and a professor of Urology there). Whatever the problem is, I am pretty sure she will diagnose and treat him according to the test results (cystoscopy). This test is unavailable locally, but even if it was, I wouldn't trust the doctors here. He is on a lot of fluids daily, including IV liquid (electrolytes), Molecular Hydrogen water, lemon water mixed with Manuca honey, and RO water.

He had a test called URODYNAMICS for the local urologist to determine what exactly caused his inability to void. It was inconclusive. During this test, catheters were used in both ends and was given by a nurse, resulting in eruption of his catheter balloon. After the test, we came home but he was in extreme pain. All the catheter collected was PURE BLOOD. I called the urologist very worried about my husband. Doctor told me "Don't worry, it will clear in a couple of days." A couple of days later, his bag was half full (leg catheter 800ml capacity) with blood, not a drop of urine. I called the doctor again, and told him that I am taking hubby to the ER and said "Fine, if they need me, they will call me.) ER nurses were trying to drain the blood that was accumulated along with 2,500ml of urine. He was admitted with a systemic infection, and was placed on IV antibiotics. His kidneys were damaged, but he came around and they are 100% functional again. He was hospitalized 4 days for what his urologist's nurse accomplished! I tried to find out exactly why his catheter balloon was erupted, but if you know of a doctor to accept full responsibility and liability for almost causing one's death, please let me know. No liability whatsoever, NONE! All this doctor told me is that his previous urologist may have caused the balloon's eruption. I told him that was about a year ago and to please tell me the truth. I was to take legal action, but no time for that.

After this incident when my husband almost lost his life, I WILL NEVER TRUST any local urologists or any doctors in my town, ever again.

LeharLover62 profile image
LeharLover62 in reply to Despe

wow! I’m so sorry to hear your story! We went through all the tests above at Stanford (but his catheter did not block or balloon and it sounds like someone seriously messed up.) this sounds like a pretty terrible complication you’re dealing with. Maybe they will move him to a suprapubic catheter? It’s supposed to be safer.

After Stanford put a in dwelling foley in hubby he had lots of problems with bleeding and infection, but then we moved to Austin Texas and found a great urologist who mostly deals with neurogenic bladder. He removed the foley completely and started hubby on Botox injections. Everything is so much better. Not perfect, but we no longer have the stress of the catheter and constant bleeding and infections. Fingers and toes crossed that you can find a good solution. They can do a lot with prostate nowadays if that’s the issue.

Despe profile image
Despe in reply to LeharLover62

Thanks! You understand what we have been through! I am so glad you and your husband found a good urologist and solved his catheter problems. What a relief for both of you!

Hopefully, Dr. Miller will find a permanent solution. I know for a fact that hubby's bladder is so enlarged, it suppresses the urethra resulting in his inability to void. She might use laser to shrink it, don't know, but there are a lot of alternatives. We have an amb referral from Vanderbilt MDS and Dr. Miller is aware of hubby's PD.

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Have you tried bee propolis?

Despe profile image
Despe in reply to WinnieThePoo

If you are asking me, no WTP, I haven't, but I bought Royal Jelly Premium, a Canadian product. Would that do? :)

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Bee propolis is a natural broad spectrum antibiotic. sciencedirect.com/science/a...

Despe profile image
Despe in reply to WinnieThePoo

Thank you! Great finding, Winnie. It sure is worth of trying it.

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