Low dose Naltrexone

[oerganix]

Thanks darkrobot. Very interesting. I did a similar protocol of antibiotics while on the Marshall Protocol, which is also concerned with stealth or L-form bacteria, and was helped tremendously in many areas, but not much for energy, so I'm hoping LDN will do that.

I also take zinc and CoQ10 and am thinking of adding magnesium.

I didn't think your post too long at all. Good luck on LDN and
see ya later...

 

[Noreen Martin]

No, I haven't tried it. Although, I've heard of it. I believe that it wouldn't hurt. Believe me, I would much rather go the natural route whenever possible, as most drugs have too many side effects for my liking.

 

[Cloud]

Cloud
how functional are you after all your txt with Peterson? Are you able to work again ...or how would you rate yourself?
Did Peterson have nothing more for you after the Vistide and IVs?
What was his attitude with respect to your further txt/ healing ?

Aquariusgirl....I was on Vistide 1 year to the day. I made overall ~50-60% improvement, especially in the cognitive areas, and with the OI. I was so very sick that the Tx basically brought me back from the dead (My "eyes were like black holes in the sky" prior to Tx). My Immune and Hormone panels showed improvements commensurate with the symptom improvement. Basically the lab value changes and symptom improvement showed an illness that is definitely infection driven. No, I'm not well enough to work....mostly due to stress intolerance and PEM (which I think is due to the xmrv). Because of xmrv+, we feared relapse after stopping the Vistide....so far 4 months out, I have not. No he didn't have anything further for me at this point. But I have taken up treating Lyme & Co with my GP in this interim. I have dramatically positive results with some abx (antibiotics), but I also have detox problems making tolerance difficult (Vistide is metabolized in the kidneys and was therefore not a problem). The positive response to abx could in part be an anti inflammatory effect, especially with the Macrolide abx. But, I can tell it's also affecting infection. I have also thought the abx could be affecting other undiagnosed pathogens. The only definite + Lyme lab I have is for Babesia, which I am told is turning up frequently with xmrv.

Thanks darkrobot.....your story shines light on possibilities and gives me some hope of LDN working because I'm much better today than I was prior to Tx. and when I tried LDN in the past.

Diva...thank you for that information. I had no idea that a drug as benign as LDN needs attention to it's quality. Thanks for the link too....I'll check it out.

 

[Diva55]

I know price is an issue in the US for prescriptions so your compounding pharmacy could charge a lot more if they are not turning over large quantities of LDN. Which is another reason to go to one of the recommended ones as they turn over a lot & therefore should keep the price low.

Anyway, That's how it works in the UK where one pharmacist wanted to charge 300 per month to the NHS ( I think I was the only person asking for LDN) where Dickson's who turn over huge quantities charge 15 per month. With the NHS I get it 7.20 a month which suits me fine!

I read somewhere about the purity of the LDN powder but can't rtemember where I read it. Crushing the 50mg pills means you are taking in the fillers as well which I read have caused people problems.
So compounding pharmacists would use just pure powder to either make the liquid or fill capsules.

Diva...thank you for that information. I had no idea that a drug as benign as LDN needs attention to it's quality. Thanks for the link too....I'll check it out.

 

[oerganix]

Yes, different manufacturers use different fillers, and different patients are sensitive to different compounds, so if one starts LDN and has a bad reaction, it's useful to know whether it's the fillers or the LDN that is causing the problem. OR, better yet, to get started with LDN without any fillers in the first place.

I'm thinking fillers might be what causes my stomach ache for a few hours after taking it, but I had to get mine from India, a years supply, which is in a dark container in the refrigerator, so I'll be grinning and bearing it until such time as I might be able to try LDN without any fillers. On the other hand, maybe that part of my immune system that is in my gut is getting a make over and it's only temporary...

I've definitely had to give up beer since starting LDN. Don't know exactly why, but it worsens my stomach ache. It didn't bother me before, but it's a small price to pay. I had a small rum and club soda last night and it didn't bother me, so it's not the alchohol per se.

 

[Diva55]

Hi Darkrobot
Welcome to the thread.

Wow, what an inspiration your story is!

I wonder if LDN was able to work on your system to heal it after all the other work you did. Like a jump start to the system!
It's so difficult to speculate as we are all different with so many different health challenges.

But great to hear your amazing journey and wishing you continuted improved & good health.
Good luck with your studies - that is indeed amazing to take that on & be able to cope so well.

Best wishes

Diva

A few months ago I started on LDN, and the results so far have been amazing. I am now up to 3ml per day and am, dare I say it, feeling better than I have done for many years- maybe ever? I have lots of energy, have been doing exercise for fun, even some jogging.

The biggest revelation however, has been the reduction in brain fog. I had no idea how poor my cognitive function had become until my brain started working properly again!
I have recently started an Open University course, eventually leading on to a law degree, which would have been absolutely inconceivable before.

It is obviously dfficult to judge exactly how much is down to LDN and how much to the other meds, but I have noticed a great deal of rapid improvement since starting LDN. I don't want to count my chickens just yet, but am hoping I am finally on the road to recovery. My only real side effect was initial insomnia- however that soon wore off and I am now sleeping better than I have done in years and feel refreshed on waking rather than resembling the living dead..

 

[Diva55]

Hi Oerganix
I have pure LDN in liquid format and as you may remember I got crippling stomach cramps when starting with 1.5ml.
I do have a super sensitive stomach with past chronic IBS.

So I'm saying although I had the pure form I still got the stomach issues! If you can tolerate the fillers then that's fine. I've heard the stomach issues do settle down.

Ah, alcolhol - those were the days. Haven't had a drink for at least 6 years.
Cheers!
Diva

Yes, different manufacturers use different fillers, and different patients are sensitive to different compounds, so if one starts LDN and has a bad reaction, it's useful to know whether it's the fillers or the LDN that is causing the problem. OR, better yet, to get started with LDN without any fillers in the first place.

I'm thinking fillers might be what causes my stomach ache for a few hours after taking it, but I had to get mine from India, a years supply, which is in a dark container in the refrigerator, so I'll be grinning and bearing it until such time as I might be able to try LDN without any fillers. On the other hand, maybe that part of my immune system that is in my gut is getting a make over and it's only temporary...

I've definitely had to give up beer since starting LDN. Don't know exactly why, but it worsens my stomach ache. It didn't bother me before, but it's a small price to pay. I had a small rum and club soda last night and it didn't bother me, so it's not the alchohol per se.

 

[Noreen Martin]

You all are right about the fillers being important. Thus, it is very important to use one of the pharmacies on the official website, lowdosenaltrexon.org. I use Skip's pharmacy in Florida because he compounds it properly and Dr. Skip also speaks at all the LDN conferences.
Naltrexone in higher doses, 50mg is used for drug and alcohol addiction, however, many of us have found that even in the standard dosage of 4.5,mg., alcohol affects us in a negative manner, meaning slight sickness or feeling sick to the stomach. As Diva55 suggested, a slight price to pay for such very good results!

The price at Skip's pharmacy is about $23.00 plus shipping for a month's supply.

 

[oerganix]

You all are right about the fillers being important. Thus, it is very important to use one of the pharmacies on the official website, lowdosenaltrexon.org. I use Skip's pharmacy in Florida because he compounds it properly and Dr. Skip also speaks at all the LDN conferences.
Naltrexone in higher doses, 50mg is used for drug and alcohol addiction, however, many of us have found that even in the standard dosage of 4.5,mg., alcohol affects us in a negative manner, meaning slight sickness or feeling sick to the stomach. As Diva55 suggested, a slight price to pay for such very good results!

The price at Skip's pharmacy is about $23.00 plus shipping for a month's supply.

Except that I live in Nicaragua and shipping here was quoted to me by Skips to be between $50-100...monthly....yikes! So I bought a year's supply from India for $133, shipping included.

The stomach issues have lessened so much I don't consider them a problem anymore, except if I drink beer, so goodbye beer! As you say, small price to pay.

Thanks, Diva, for that info. Tells me my naltrexone fillers are probably not at fault. I just wish there was more research out there, regarding ME/CFS and LDN.

 

[alice1]

Cloud I believe you mentioned you were on Imunovir,and if that was you are you also taking LDN as well?
Or is anyone on both?
Thankyou.

 

[Noreen Martin]

Join the Yahoo LDN Support Group, as many people who take LDN are members of it. If you have a technical question, you could always email Dr. Skip at Skip's Pharmacy. He is busy, but will get to your email.

 

[Cloud]

Good morning all....I picked up my LDN yesterday. My GP was eager to give it to me saying that she see's lots of success with it. She ordered 3.5mg but is ok with me starting as low as I like. But, she wanted me to hold off on it and see how well I do on the Hydroxycobalamin she gave me IM in her office. WOW!! That form of B12 affects me light years different from the other which I was on for really long periods of time with no response whatsoever. She want's to order a vial of it for me so I can do it myself at home. My insurance doesn't pay for it......so, can anyone recommend a good and inexpensive pharmacy for ordering Hydroxycobalamin here in the USA.....west coast would be preferable since I'm in Calif. Thanks everyone and sorry for straying off topic.

Alice....no I have never taken Immunovir. I was on Valtrex years ago, with no response at all. I was on Vistide this last year with a great response.

 

[Diva55]

Good luck with LDN, Cloud.

Although this is from 2008 it's an interesting article which states that the sublingual form of Hydroxycobalamin was just as good as the IV's.


http://www.prohealth.com//library/showArticle.cfm?libid=13561

I use Perque brand as part of the Methylation Protocol but have stopped it for a while to adjust to LDN.

You could post your question in the B12, Detox section.

Good morning all....I picked up my LDN yesterday. My GP was eager to give it to me saying that she see's lots of success with it. She ordered 3.5mg but is ok with me starting as low as I like. But, she wanted me to hold off on it and see how well I do on the Hydroxycobalamin she gave me IM in her office. WOW!! That form of B12 affects me light years different from the other which I was on for really long periods of time with no response whatsoever. She want's to order a vial of it for me so I can do it myself at home. My insurance doesn't pay for it......so, can anyone recommend a good and inexpensive pharmacy for ordering Hydroxycobalamin here in the USA.....west coast would be preferable since I'm in Calif. Thanks everyone and sorry for straying off topic.

Alice....no I have never taken Immunovir. I was on Valtrex years ago, with no response at all. I was on Vistide this last year with a great response.

 

[Frank]

I tried some sublingual from Freddd and also intramuscular hydroxycobalamin + B6 and B3. I must say the second one did really do something for me. But it also made it harder to sleep. So Cloud if you're experiences extra difficulties sleeping, keep a watch on the IM B12.

 

[alice1]

Thanks to everyone for your replies.

 

[leaves]

Could anyone tell me the difference between Hydroxycobalamin and methyl-b12?

 

[Cloud]

Thanks Everyone!

 

[Rrrr]

leaves,

the methyl-b12, according to rich van k, is supposed to be a bit dangerous if you have high levels of mercury in your body.

rrrr

 

[Cloud]

I had hair analysis done and Mercury was almost undetectable. I think Tin was the only one above moderate levels. I wonder why people don't have this test done before, say like....removing all their amalgam fillings. I know blood tests are unreliable for heavy metals, but I would think that hair would be accurate.

 

[alice1]

I pick up my LDN today and I'm so excited.Doc Klimas said it was ok to add it with the Imunovir.
Can anyone tell me when they felt a change on the LDN.