richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I am at the end of my rope with pain and my Psychiatrist is willing to try Low Dose Naltrexone. However, she is not sure how to order, whether it should be a compounding pharmacy, etc. Does anyone know where to find a compounding pharmacy? we are in the Philadelphia suburbs.
Thanks
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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There is a link that lists recommended compounding pharmacies that compound LDN.
I get mine from one of them in NY, but can't remember which one. Imagine that...
Posts: 699 | From confusion | Registered: Jan 2011
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richedie
Frequent Contributor (1K+ posts)
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posted
So I would have to order online?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Nope, your doctor can call in a prescription for you. Then they call you and you pay by credit card. They ship it to you.
Posts: 699 | From confusion | Registered: Jan 2011
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I use " The Compounder" in Aurora Illinois.
Skips Pharmacy in Boca Raton Florida is another approved LDN compounding pharmacy.
They both have web sites.
Do use one of the approved compounding pharmacies.
The doctor sends in the prescription and they ship it to your residence. Very easy.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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bcb1200
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Member # 25745
posted
I use Gideon's pharmacy in NY.
Have your Doc prescribe a 90 day supply of 4.5 mg if you are a guy and near 200 lbs.
Fax the Rx to Gideon's. They will ship it to you.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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seekhelp
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I did what bcb1200 said. Worked fine.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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richedie
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Member # 14689
posted
Yes, I am 212 lbs. I will give my doctor the info but I can't believe insurance won't cover any of it? What a pain!!!!!!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
It's not horribly expensive. I only take 2.0mg and pay $35/month.
I can't take more because it interfers with my sleep, but I'm only 125 pounds.
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richedie
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posted
Does it help pain?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I don't have any joint pain with my Lyme. The only pain I have is in my muscles. Nothing has helped me with that. MM helps a little, but it's not for everyone.
When I was first put on LDN, about 9 months ago, it put me in total and complete remission for about 7 days, then it started coming back, little by little.
I have no idea why. I still take it because I'm afraid not to. Can't imagine how I'd feel if I wasn't taking it. Wish I could take more.
Posts: 699 | From confusion | Registered: Jan 2011
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richedie
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Member # 14689
posted
quote:Originally posted by stillwater: I don't have any joint pain with my Lyme. The only pain I have is in my muscles. Nothing has helped me with that. MM helps a little, but it's not for everyone.
When I was first put on LDN, about 9 months ago, it put me in total and complete remission for about 7 days, then it started coming back, little by little.
I have no idea why. I still take it because I'm afraid not to. Can't imagine how I'd feel if I wasn't taking it. Wish I could take more.
My BIGGEST thing is muscle pain! Horrible, hellish muscle pain. That is pretty much my only symptom these days, some inflammation and terrible jusic pain. Enough to make me want to jump off a bridge.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Razzle
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posted
I used to have bad muscle pain too. Then I started taking Magnesium supplements (1000mg/day minimum...sometimes I take more) and the pain went away and never returned.
Some find they need to also include Malic Acid, MSM, and/or other supplements.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Stillwater,
Just as an experiment, you could skip a day or two of LDN once in a while.
It could be that you are carrying the drug too long, storing a bit of it, and not getting the surge of endorphins that actually cause it to work.
Since you mentioned that it worked for a week, that may be a clue. You could use it for seven days, then take a day or two off, and start again.
It may not work, but it would be an easy test.
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
quote:Originally posted by Razzle: I used to have bad muscle pain too. Then I started taking Magnesium supplements (1000mg/day minimum...sometimes I take more) and the pain went away and never returned.
Some find they need to also include Malic Acid, MSM, and/or other supplements.
Yes, I tried all of those.
All you did was add the magnesium? What brand? Did you also add Calcium?
As much as 800-900mg/day of magnesium but maybe I will try more. I use a capsule form and Natural Calm. When you take that much Magnesium, you need to take lots of extra Calcium as well.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Worth a shot. I'll give it a try.
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Sammi
Frequent Contributor (1K+ posts)
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posted
I get LDN sent to my house from Gideon's in NY. When I started LDN, I called all the pharmacies on the website and I believe they may have the best price.
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posted
I would highly recommend NOT starting out at the full dose of 4.5mg. I have been on this for about 4-5 months. It can cause some major symptoms and sleep disturbances.. In the end it does help get your immune system back on the right track.
I get mine from the Compounder in Aurora IL also. I would get at least a 90 day supply at 1.5mg. Try it for a week if you are good, take 2 pills at 3mg....until you are comfortable getting to the max 4.5mg
Hope this helps Fuel
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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posted
I get mine from a pharmacy in Colorado, it's not expensive.
My LLMD prescribed up to 4.5 mg daily, but at my last appointment, he said that the guy who is the guru of LDN says there is no difference in 3 mg or 4.5 mg, so I'm going to stay steady at 3.
You have to work up to it. Check out he LDN website, they have good information.
I really like it, and feel it is helping me.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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Razzle
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Member # 30398
posted
I had been taking calcium but it didn't make the muscle pain stop. So then I added the Country Life brand Chelated Magnesium (I have no financial connection with this company).
I also have taken various brands of calcium, some better than others.
Right now, I'm on 1500mg Calcium D-Glucarate (from Thorne Research; again, no financial connections...) and 1000mg of the Country Life Chelated Magnesium per day (both spread throughout the day), but have taken as much as 1500mg Magnesium with the same amount of Calcium with little to no ill effects.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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