low dose naltrexone aka LDN

[Trudi]

[user=27]Maz[/user] wrote:

I have to reserve judgement on LDN as I've only just started it, last week. 😉 

Hi Maz–

I hope it works real well for you.  Looking forward to hearing about your experience with it–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=442]Trudi[/user] wrote:

I hope it works real well for you.  Looking forward to hearing about your experience with it–

Thanks, Trudi, and so kind of you! I will share as I go on with it…so far so good…no vivid dreaming on just 2mg. I'm already at 95% improved on antibiotic therapy, but I'm mainly trying it at this late stage as I am hoping for a bit of a boost to immune function and to improve stamina. First couple of nights were a bit “buzzy” and I had a return of all-over muscle twitches, but otherwise feeling so much brighter in myself and, whether it's my imagination or not, I don't know, but my persistent knee and ankle are virtually pain free. I had my first Advil-free morning this AM! I usually only take 2 a day with breakfast, but I picked up the bottle, looked at it and realized I didn't need them at all. 😀 Still too early to tell anything, I reckon, and there is still time for some herxing, but…

Peace, Maz

[nspiker]

Looks like there are a few of us on the LDN track….

Can anyone share where they ordered their LDN and the cost?  Took my prescription to our local compounding pharmacy, and it was $45 for each dosage, for a total of $135.00. 

Has anyone ordered from a pharmacy in NY called Gideon's Drugs?  Supposedly it's $15 for each compound, and $7 shipping.

thanks, nancy

[Maz]

[user=1552]nspiker[/user] wrote:

Can anyone share where they ordered their LDN and the cost?  Took my prescription to our local compounding pharmacy, and it was $45 for each dosage, for a total of $135.00. 

Has anyone ordered from a pharmacy in NY called Gideon's Drugs?  Supposedly it's $15 for each compound, and $7 shipping.

thanks, nancy

Hi Nancy,

I got my order through Irmat Pharmacy and they were pretty efficient. Apparently, they are Dr Bihari's preferred pharmacy, according to their website. 

http://www.irmatpharmacy.com/

There are other recommended compounding pharmacies all listed on the LDN site, though, which you've probably already seen:

http://www.lowdosenaltrexone.org/

Surprisingly enough, my new insurance, Cigna, covered the cost and I only had a $20 co-pay, plus shipping.

I also read (can't remember where :blush:) that Skip's pharmacy in FL was pretty great, as the owner has RA, uses it, himself, and will answer LDN user queries by phone.

Hopefully, one of the more experienced users will respond for you and give you confirmation, as I'm so new at all this, myself.

Peace, Maz

 

[Trudi]

[user=1552]nspiker[/user] wrote:

Can anyone share where they ordered their LDN and the cost? 

Here is where I got mine–

http://www.mdcustomrx.com/

The cost was $27 for 30 capsules.

I had my first Advil-free morning this AM!

Wow, Maz, that's heading in the right direction!!

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[APbeliever]

I was trying to find an LDN doctor in Dallas, TX for the whole day today and so far no such luck. Does anyone know any docs in Dallas, TX that prescribe LDN? I don't want to drive all the way to Lufkin, TX to see Dr. K

[Eva Holloway]

nspiker,

I am going to do it myself with a bottle, a dropper and distilled water. one 50mg pill to 50ml water. keep in refrigerater till used up. 1ml is img so I have to take four droppers  of 1 mg each for the night, I can handle that.  Right now I don't pay nothing for my meds until I hit 2500 Dollar (Medicare D), so I may have nothing to pay till the end of the year since I order my Minoxin from Canada. I paid 115 Dollars at my compounding pharmacy her in Houston, TX. I take very little medication at this time. I still hav a bottle of Biaxin and since I take it only three times a week it may be April or May before I finish the bottle.

Eva:D

Eva Holloway

[APbeliever]

Maz, you really need to try MSM and Boswellia serrata. You would not need any painkillers. I am using MSM powder and Boswellia serrata and I dont' need painkillers anymore.

[APbeliever]

Eva, thats an excellent idea. The pharmacy that Doctor Bihari uses told me today its around 85 dollars for a 90 supply (1.5 mg to 4.5mg) and no shipping charges.

[Maz]

[user=1212]APbeliever[/user] wrote:

Maz, you really need to try MSM and Boswellia serrata. You would not need any painkillers. I am using MSM powder and Boswellia serrata and I dont' need painkillers anymore.

Hi APBeliever,

Thanks for the tip, but I had to come off boswellia because it is contraindicated for use simultaneously with Diflucan…same P450 cytochrome pathway and apparently too hard on liver. MSM doesn't really call to me, as I tried it last year and didn't notice much difference. 😕  

How are you managing through your herx now that you're back on your AP? Are you doing okay?

Apparently the lady who runs the following site maintains a list of LDN physicians:

http://www.freewebs.com/crystalangel6267/index.htm

Peace, Maz

[PhilC]

[user=1212]APbeliever[/user] wrote:

Maz, you really need to try MSM and Boswellia serrata. You would not need any painkillers. I am using MSM powder and Boswellia serrata and I dont' need painkillers anymore.

Hey, that's good news. And I think it's good that you are looking into LDN.

If I decide to try LDN, I will probably make up a solution using a 50 mg tablet of naltrexone. Not only will it be less expensive that way, but it will allow me to fine-tune the dose. If I can get a prescription for thirty 50 mg tablets of naltrexone my cost should be $10, and that much naltrexone should last from 47 weeks to more than a year depending on the dose.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[nspiker]

Thanks Maz and Trudi for your info on LDN compounding pharmacies.  I had no idea they might take insurance.  I'll call today and see if it's covered, if not, will go with one that you guys provided. 

Thanks Eva, maybe when I get more comfortable with the whole LDN thing, I will mix up my own, but for now, just want to test it out.

[APbeliever]

Maz, thanks for asking. I am doing ok for now. MSM really works great if I increased the dosage to 5-6 grams a day but it makes me dizzy. Only 2.5 grams is recommended though but I know one of our scorpio friends here, Sir Rifesalot is taking 30,000 mgs of it. I am only taking Mino 100 mgs on alternate days. I am going to doctor this week to get my prescription of LDN. Wish me luck. Somehow the doctors are afraid to write a LDN prescription. I checked with Crystal's (angel) list and I finally found one doctor willing to prescribe it. By the way, I believe the type of oral ALA recommended by Dr B. is also on this forum here somewhere. It is called Metabolic Maintenance ALA in case you guys are interested.

http://www.amazon.com/gp/product/B000NC0R58/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B000NC0R62&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0X5FVT2ZFEJ0X2BEAFC9

 

[APbeliever]

Forgot to add here that I recommended my cousin to take Metabolic Maintenance ALA 100 mgs for his diabetes. He had a fungul problem that would not quit due to diabetes and by using ALA his fungul problem is competely gone now. It also did wonders for his 15 year old diabetes problem. For me using Natrol ALA and NSI ALA (worst of both listed is NSI's ALA with Carnitine) did absolutely :doh:nothing.

[Maz]

[user=1212]APbeliever[/user] wrote:

I am only taking Mino 100 mgs on alternate days. I am going to doctor this week to get my prescription of LDN. Wish me luck. Somehow the doctors are afraid to write a LDN prescription. 

APBeliever, glad to hear you're managing the mino okay so far and that you've found an LDN prescriber. I do wish you luck!!! 😀 I know you've had a rough old time of it, so it's about time you had some success, eh? So I'm rooting for ya on the sidelines.

Thanks also for the ALA info. I have been using the NSI version, but it's a huge bottle and want to finish it up before ordering anything new. Then, I'll try the Dr B recommended one, which I think Nancy also posted about. Thanks for sharing the link as I was going to have to dig around for it. Cheers!

Peace, Maz

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