Low Dose Naltrexone

[lor]

Hi,

I get mine at The Compounder, Aurora, IL.  The LDN site has a list of places to get it compounded.

I have 6 more days at the 1.5 mg and then I go to 3 mg.  I am healing.  Very slowly.  I got the night sweats from it.  Anyone else have this side effect.  The sweats are starting to go away now.  My pain is getting less.  But I am on ABX and 5 mg prednasone AM & PM. 

lor 

[Eva Holloway]

Becky

someone put in skip's pharmacy web, they are supposed to be good, since he is also on the LDN user group.and yes on the LDN page there are more pharmacies you can choose. I have a place here in Houston that does the compounding,

Maybe jtubman can tell you how to use it with the distilled water and make it yourself. I will try that after my present script runs out.

You may need to cut down your Cellcept since it is an immun supressent, talk to your doctor about it, I weaned of the Cellcept in three months. Stay low with your mino on the beginning so you will not herx too much. You can always ask the volunteers and all others for help.

I am glad you started the mino and the eventually the LDN.

Eva:D

Eva Holloway

[Mumof3]

I just started on LDN (3 mg) Saturday night. It is making me herx big time. I also started on some new Lyme drugs which could be contributing to the herxes. I went on the LDN Board earlier and supposedly herxing is normal especially with Lyme. I probably should have started on a lower dose as I am sensitive to medication. With regards to sleeplessness, it is having the opposite effect on me. I am sleeping well and I just want to sleep all day. I will give it a while longer to see if it helps. If the herxing is too bad, I will consider lowering my dose.

[Mumof3]

BTW – Does anyone know the recommended dose of ALA to take with LDN?

[nspiker]

Hi Mum,

I read that Dr. Berkson recommends 900 mg. ALA with LDN.  I have been hesitant to start LDN, but think I will start it during the day for the first week, to avoid the sleep and dream issues.

What new lyme drugs are you on?  Have you kicked babesia? 

nancy

[Mumof3]

Thank you Nancy. I may stop LDN for a couple of weeks are restart it to figure out what is causing the herxing (new drugs or LDN). I have some strange herxing symptoms that I had at the very start of AP that I thought were long gone. So I'm sure somethings being stirred up. Whatever it is I feel crappy.

I'm still working on the Babesia but I'm off Mepron for a bit since I was on it for 3-4 months. My chest/ribs bother me but I'm finding the sauna helps. My Lyme symptoms are pretty active right now (twitching, numbness, tinnitus) and it's causing my thyroid to crash so I've just started on Ketek which is supposedly a heavy hitter. How about yourself? Have you started on the Mepron?

[Cherie]

Congradulations on your success with L.D.N., even more so getting rid of your psoriasis(yippy) that's incredible. I'm hoping to use your post to convince my doctor to let me try L.D.N. How long did the scary dreams last? Everyone seems to be compounding their L.D.N, is anyone making it themselves?.

Thanks! Heather

[PhilC]

[user=269]Andrea[/user] wrote:

Any Apothcary (sp?) pharmacy could do it for you.  It has to be compounded I believe.

That may be true, but will they do it right? If it's not compounded properly, the LDN won't work well. Some pharmacies use crushed tablets instead of pure naltrexone powder and some don't use a quick-release filler. Neither of those are optimal. It makes sense to seek out a pharmacy that has a reputation for producing high-quality LDN. Either that, or be willing to educate a local compounding pharmacy on how to properly make LDN (if necessary).

Phil

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

[nspiker]

Mum,

Sorry you're feeling crappy.  I started on Mepron about two months ago.  I waited to start LDN because my LLMD doubled the Mepron dosage and some of my old symptoms returned (leg stiffness, headache, twitching).  Didn't want to confuse the reaction of the two drugs.  

I haven't had my thyroid crash, but my adrenal system is out-of-whack….

nancy

 

[bhodson]

Hey Gang,   I started the Mino last night!  I found we do have a compound pharmacy here in Joplin and I talked to the pharmacist today.  He was very informed about the LDN and has a lot of customers now taking it.  He said he is always interested to hear why these patients are taking the LDN.  He said some are taking it for diabetes, auto immune diseases, cancer, and even thyroid problems!!  He said the insurance companies won't pay for the compounding of the drug and it will cost me about $35.00 for a months supply of 1.5 Naltrexone.  Does this price sound about right to you all? I will start the LDN tomorrow if I get the medicine compounded!   Eva, I have completely stopped the Cell Cept for right now because I am having some biopsies of abdominal nodules on Monday.  My rheumy said to stop the Cell Cept for a least a week to make sure I heal okay and don't get any infections in my biopsy sites.  I am now having lots of areas of broken skin from all the high doses of prednisone the last year, SO I really need to get the steroids down as fast as I can.  I have been on them for over 35 years now since I've had my adrenal glands removed but normally I am on 20mg. Hydrocort which is just a replacement dose.  Thanks again to all of you for your help!  It makes it SO much better to be able to discuss all this stuff with someone that understands what we are going through. Thanks again,  Becky

[nspiker]

My LDN was purchased from Gideon's Drugs in NYC.  It was only $15 for one month and was able to get a three month graduated supply for $45, plus $7 shipping.  Just fax them your prescription, and follow up with name, address, and telephone number.  It arrives in a few days.

(212) 575-6868 phone
(212) 575-6334 fax

http://www.lowdosenaltrexone.org/

nancy

[casey]

Mum, You asked above about how much ALA people are taking.   I think this is individual as well. You can always work up.  And yes, too many changes at once makes one wonder what the herx comes from. Been there , done that and it wasnt fun.

 

[Mumof3]

Nancy and Casey – Thank you. I am stopping the LDN temporarily and will look into ALA when I restart it. Today was another horrible day so I need to figure out if its the new drugs or LDN that's causing the herx.

[nspiker]

Mum, I just took my first dose of LDN this morning (instead of evening, to avoid insomnia and vivid dreams).  I am not feeling too good either; tired, little nauseated, grumpy, etc. 

Anyone else have side effects?  I'll see how it goes…

nancy

[Mumof3]

Nancy, I'm sorry to hear you aren't feeling too well either. It's funny that you mentioned grumpy. I'm usually pretty happy go lucky but I have been an absolute bear all week. Gosh, I wonder if that's why my husband is working so many hours this week! 😛

The other thing that is really aggravated is my G.I. problems. This has been pretty much under control with a few minor flares. However, this week it has been awful (heartburn, bloated, feeling of fullness, nausea). I don't even want to eat. The last time I felt this bad was when I started on mino. So I still don't know if it's the new medication or LDN. I did go on the LDN Board though and it said that you can feel horrible at first when taking LDN to treat Lyme. The following threads may be of interest to you:

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=1953

http://ldn.proboards.com/index.cgi?board=links&action=display&thread=1935

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