Re: Parkinson's & LDN

[Guest guest]

In a message dated 9/1/05 4:40:59 PM, randkarnold1@... writes:

erry,

        My husband is 51.  He got on Sinemet before we found out about LDN and after a few weeks on Sinemet, he did show considerable improvement when he had worked up to 6 a day.  Subsequently, he backed off to 3 a day without too much loss of function.  But we do not want him to be on any more Sinemet than is necessary as studies have shown that after being on it, especially at higher doses, patients often develop dyskensias (uncontrollable movements).  Often for older people though, this is not so much of a concern.

        Also, before he got on LDN, he started taking selegeline (brand names Eldepryl or Deprenyl).  Once he was on that, he was able to drop from 3 Sinemet down to 2.  And then once he got on LDN, he dropped down to 1 Sinemet and is functioning as well and somewhat better than when on the 3 Sinemet.  He also tried Amantadine for awhile but we did not see much improvement from that and he did experience some side effects.

        I would suggest your mom definitely try LDN first as that has potential / likelihood to stop the progression of the Parkinson's.  Sinemet only helps with the symptoms but does nothing to stop progression.  Selegeline, though, is thought to also have some effect on slowing progression as well as having some symptomatic help, so perhaps that would be the next thing to try if she still needs some symptomatic help after being on the LDN awhile.  We do feel that Rick has had some improvement in his symptoms from the LDN--his slowness of movement has improved and his energy and strength have rebounded from being very low.  It's hard to say how much to attribute to the LDN or the selegeline or Sinemet.  At some point, he will probably try dropping the 1 Sinemet and see what happens.

 

Kathie    

Thank you Kathie,

I so appreciate your thorough disclosure of experience. It is priceless. Thank you so much for sharing and taking the time. Yes, I think I agree that I would like to try the LDN without the Sinemet.

Please let me know if you change your husband's regiment and experience reactions.

I can't Thank you enough. I think it's about time to order LDN through Medmex.

Best Wishes,

Terry

[Guest guest]

Kathie,

I really appreciate the confidence boost. Ok, I'll see about ordering through Medmex. Yes, it is hard to know which supps are helpful. Mom is taking many supps but yet to try glutathione. I will be waiting to hear your experience with liquid LDN post your 3 week trip. Have a safe and good journey.

Mom's also taking 1200mg Coenzyme 10. Along with 3 doses of B6 50mg each. I've noticed improvement with 1200mg coenzyme 10, now in our 3rd week. But remember, she's not on any Sinemet or equivalent. So I cannot vouch for 1200 Coenzyme 10 interaction with Sinemet. I wonder if there's any contraindications of Coenzyme and LDN?

Thank you Kathie. I hope to hear more of Rick's improvement. I will try and post you my mom's experience once she is on LDN.

Thank you very much,

Terry

[Guest guest]

Terry,

My husband is 51. He got on Sinemet before we found out about LDN and after a few weeks on Sinemet, he did show considerable improvement when he had worked up to 6 a day. Subsequently, he backed off to 3 a day without too much loss of function. But we do not want him to be on any more Sinemet than is necessary as studies have shown that after being on it, especially at higher doses, patients often develop dyskensias (uncontrollable movements). Often for older people though, this is not so much of a concern.

Also, before he got on LDN, he started taking selegeline (brand names Eldepryl or Deprenyl). Once he was on that, he was able to drop from 3 Sinemet down to 2. And then once he got on LDN, he dropped down to 1 Sinemet and is functioning as well and somewhat better than when on the 3 Sinemet. He also tried Amantadine for awhile but we did not see much improvement from that and he did experience some side effects.

I would suggest your mom definitely try LDN first as that has potential / likelihood to stop the progression of the Parkinson's. Sinemet only helps with the symptoms but does nothing to stop progression. Selegeline, though, is thought to also have some effect on slowing progression as well as having some symptomatic help, so perhaps that would be the next thing to try if she still needs some symptomatic help after being on the LDN awhile. We do feel that Rick has had some improvement in his symptoms from the LDN--his slowness of movement has improved and his energy and strength have rebounded from being very low. It's hard to say how much to attribute to the LDN or the selegeline or Sinemet. At some point, he will probably try dropping the 1 Sinemet and see what happens.

Kathie

Thanks Kathy! I am wondering how LDN works without the Sinemet. Has your husband had any side effects of the combined single dose Sinemet and LDN? Also, do you mind my asking your husband's age? I ask only to weigh any possible consequences of the drugs to my mom's age group.Once Again,Thanks,Terry

[Guest guest]

You're welcome Terry. This list has been a great source of info--even if not much has been on LDN & Parkinsons so far. But as more try LDN for Parkinson's, hopefully the number of posts about it will grow.

So far Rick has been taking the LDN as capsules but recently ordered some from Medsmex as he wants to see if he might get a bigger boost as some folks with MS are getting from liquid LDN. However, we are leaving next week for a 3 week trip so are going to wait on trying the liquid version til we get back home. I also should mention that Rick takes a whole bunch of supplements too--antioxidants, glutathione precursors, vitamins, fish oil, etc.--hard to know how much of those are helping but the idea is to try to help stop continued neuronal damage and hopefully encourage some rebuilding. It is expensive though, especially compared to LDN, so I would think LDN is the most important place to put $ first.

We'll be interested to hear of your mom's experiences.

Kathie

On Thu, 1 Sep 2005 20:52:33 EDT Tora48@... writes:

In a message dated 9/1/05 4:40:59 PM, randkarnold1@... writes:

Terry, My husband is 51. He got on Sinemet before we found out about LDN and after a few weeks on Sinemet, he did show considerable improvement when he had worked up to 6 a day. Subsequently, he backed off to 3 a day without too much loss of function. But we do not want him to be on any more Sinemet than is necessary as studies have shown that after being on it, especially at higher doses, patients often develop dyskensias (uncontrollable movements). Often for older people though, this is not so much of a concern. Also, before he got on LDN, he started taking selegeline (brand names Eldepryl or Deprenyl). Once he was on that, he was able to drop from 3 Sinemet down to 2. And then once he got on LDN, he dropped down to 1 Sinemet and is functioning as well and somewhat better than when on the 3 Sinemet. He also tried Amantadine for awhile but we did not see much improvement from that and he did experience some side effects. I would suggest your mom definitely try LDN first as that has potential / likelihood to stop the progression of the Parkinson's. Sinemet only helps with the symptoms but does nothing to stop progression. Selegeline, though, is thought to also have some effect on slowing progression as well as having some symptomatic help, so perhaps that would be the next thing to try if she still needs some symptomatic help after being on the LDN awhile. We do feel that Rick has had some improvement in his symptoms from the LDN--his slowness of movement has improved and his energy and strength have rebounded from being very low. It's hard to say how much to attribute to the LDN or the selegeline or Sinemet. At some point, he will probably try dropping the 1 Sinemet and see what happens. Kathie Thank you Kathie,I so appreciate your thorough disclosure of experience. It is priceless. Thank you so much for sharing and taking the time. Yes, I think I agree that I would like to try the LDN without the Sinemet. Please let me know if you change your husband's regiment and experience reactions.I can't Thank you enough. I think it's about time to order LDN through Medmex. Best Wishes,Terry

[Guest guest]

Terry , Kathy, all, I am presently taking

4.5mg cap’’s of LDN, for my PD / MSA with the

following findings; Falling more, lots more, Dounle

vison, had eye sergury about three weeks go & my eyes are just now

going bad again, Dream BOY WHAT dreams., Balance gone

completely, must stay in my powerchair when going anywheres. Drooling

much more thjen normal. Am getting myself a SPARRING HELMUT today to

help me keep what little brains inside my scalp rather then getting

it lost,.

“”THE WIFE””, ,”SHE

WHOM MUST BE DEALT WTH,” wants me to stop taking it, the LDN,

RK and oh by the way I am

67 years old D X.ed w/PD 12/1997

MSA 6/2004

P M

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Tora48@...

Sent: Thursday, September 01, 2005

10:18 PM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Parkinson's & LDN

Kathie,

I really appreciate the confidence boost. Ok, I'll see about ordering through

Medmex. Yes, it is hard to know which supps are helpful. Mom is taking many

supps but yet to try glutathione. I will be waiting to hear your experience

with liquid LDN post your 3 week trip. Have a safe and good journey.

Mom's also taking 1200mg Coenzyme 10. Along with 3 doses of B6 50mg each. I've

noticed improvement with 1200mg coenzyme 10, now in our 3rd week. But remember,

she's not on any Sinemet or equivalent. So I cannot vouch for 1200 Coenzyme 10

interaction with Sinemet. I wonder if there's any contraindications of Coenzyme

and LDN?

Thank you Kathie. I hope to hear more of Rick's improvement. I will try and

post you my mom's experience once she is on LDN.

Thank you very much,

Terry

[Guest guest]

, when did you start LDN?

Re: [low dose naltrexone] Parkinson's & LDN

Kathie,

I really appreciate the confidence boost. Ok, I'll see about ordering through

Medmex. Yes, it is hard to know which supps are helpful. Mom is taking many

supps but yet to try glutathione. I will be waiting to hear your experience with

liquid LDN post your 3 week trip. Have a safe and good journey.

Mom's also taking 1200mg Coenzyme 10. Along with 3 doses of B6 50mg each. I've

noticed improvement with 1200mg coenzyme 10, now in our 3rd week. But remember,

she's not on any Sinemet or equivalent. So I cannot vouch for 1200 Coenzyme 10

interaction with Sinemet. I wonder if there's any contraindications of Coenzyme

and LDN?

Thank you Kathie. I hope to hear more of Rick's improvement. I will try and

post you my mom's experience once she is on LDN.

Thank you very much,

Terry

[Guest guest]

My husband has been only taking LDN for 5 months and his Parkinson's has been fairly mild compared to your level. I would suggest you get a phone consultation with Dr. Bihari, whose contact number is listed on the LDN website. He has several Parkinson's patients, following the longest for at least 7 years I believe. I think he would be your best source of info.

Best wishes,

Kathie

[Guest guest]

> My husband has been only taking LDN for 5 months and his Parkinson's has been

fairly mild compared to your level. I would suggest you get a phone

consultation with Dr. Bihari, whose contact number is listed on the LDN website.

He has several Parkinson's patients, following the longest for at least 7 years

I believe. I think he would be your best source of info.

> Best wishes,

> Kathie

===========

Fair warning though...Dr. Bihari charges $500 for a phone consultation but if

you've got the money then you will get your money's worth, no doubt. You can

charge it to your credit card. That's what my mom did...she had breast cancer.

My mom still says today that that's the best $500 she's ever spent. She refused

chemo and did 4.5mg LDN instead and she's still cancer free so far.