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Anyone heard of ldndoctor.com?

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Posted 1/26/2016 6:34 PM (GMT 0)
As some of you know I am looking for a doctor that prescribes LDN since my doctor has dumped me and the only others that will take me are kicking me off my pain meds.

I do have an appointment with a doctor whose name I got from a compounding pharmacy, but it's not until march. I'm going to keep that appointment and see how it goes but beyond march, the doctor I'm seeing now is not going to keep writing for my meds.

So I was looking around and ended up on the LDN Research Trust website. They have a list of prescribers by country. For the US there are only two and neither is in my area.

What do list though is a website ldndoctor.com

It's a tele-doctor service. You pay a fee of $210 for the first consultation and a 6 month script, then its less for each additional 6 month for a refill. They give a list of conditions that they use ldn to treat on the website. I didn't really look for Lyme because I saw Fibromyalgia and that is the diagnosis stamped all over my file.

I wondered if anyone had heard of them because if the local doc doesn't work out I have to do something.

The other question would be if anyone knows anything about the LDN Research Trust organization? Is the info on their website reliable?

Thanks, Kim
Posted 1/26/2016 10:52 PM (GMT 0)
bump
Posted 1/27/2016 2:10 AM (GMT 0)
Kim

If you can get the prescription, you can have it filled at one of the recommended compounding pharmacies. Irmat in NYC made the LDN used by Dr. Bihari. They sell 90 day's worth for ~$115 w/free shipping.

LDN Research Trust is excellent.

www.ldnresearchtrust.org/

In fact, I remember there being a site that helped people find LDN-prescribing physicians and I was erroneously remembering that site as lowdosenaltrexone.org.

It's nice to know I haven't completely lost my mind lol

I hope you don't mind me using this reminder to create a thread for astroman....he was asking about the site I'd mentioned and I didn't have the right answer.
Posted 1/27/2016 3:21 AM (GMT 0)
I thought the site was lowdosenaltrexone.org too and went crazy looking for it.

The problem is that I am not sure I'll be able to find a doctor that will prescribe for me. Or if I'm lucky I am wrong and it won't be a problem.

My worst symptom is pain. To the point that I rate it a 10+ and end up vomiting. I've been on hydrocodone for years and it works well enough to bring things down to a 7.

I was dumped from the practice because expensive procedures don't help me. At another pain clinic they patted me on the head and said we don't use pain meds for Fibromyalgia so just do yoga and feel better than yourself.

Having read about LDN, i figured it was worth a try. The science I read about it seems to suggest if I responded to opioids that the LDN might work since it uses the same receptors. When I mentioned LDN, I got interrogated about how I knew about it and told I shouldn't be reading anything on the internet. Right and her solution was yoga. Get real.

It was the nurse who mentioned the LDN Research Trust and she also suggested calling a specific compounding pharmacy to ask who prescribes it. She knew that one of the pharmacists knew a lot about it. I did and they gave me two names (same practice) but I am not confident about them. I have an appointment in March but they are a family practice and I don't want to change my PCP so I'm not positive that they will treat just my pain.

Too much stress now so I am trying to make back up plans to my back up plans. I have a Rheumatology practice that does treat Fibromyalgia and is working with me to stay on my meds until I can get something else in place, but they were the ones that sent me to the idiot who patted my head and said do yoga. She referred me to another pain clinic who also don't treat Fibromyalgia.

Right now, having Fibromyalgia stamped on my records is enough of a handicap. I'm not mentioning Lyme at all. That treatment has been stopped before it has even gotten started and I am trying to do it on my own (with everyone's help) but treating the Lyme is not going to make the pain go away instantly. Getting through a day with out meds isn't even possible. It's not that I'm addicted. I skip it all the time when I need to drive. It doesn't make me high. It just brings the pain level down enough to function. If I can't function I'm not going to get anywhere on the Lyme. Believe me even filling a tub with water, epsom salt and hydrogen peroxide is beyond me at those times.

Go ahead and let astroman (i hate spellcheck) know. I read the same thread but thought he was the person who knew the link. So I'm glad if it helps. I can say though that the doctor links aren't helpful because there are only two listed for the US.

Having said that, that's where I got the website ldndoctor.com. If the site is excellent then it's probably a good link. I did go on there and I think it is like $210 for a "new" patient consult which is good for a 6 month prescription, which is probably less than I'll end up paying for the yoga doctor (have to pay the deductible).

Thanks for listening,
Kim
Posted 1/27/2016 11:37 PM (GMT 0)
I mistakenly said the there were only two docs that prescribe LDN in the US, but I did not go down far enough on the page. Below the Country listing are lists for each state.

The link to the list is http://www.ldnresearchtrust.org/LDN_Prescribing_Doctors
Posted 3/20/2016 9:40 PM (GMT 0)
Just thought I would update this.

I did make an appointment with LDNdoctor.com but I did not tell them about the Lyme. I used my fibromyalgia diagnosis and told the doctor about being dumped by my doctor's practice. They won't even consider prescribing it while I was on hydrocodone, but that wasn't really an issue because you only have to be off oppiates for 2 days before starting the LDN.

It's a telemedicine practice so I essentially talked to the doctor through Skype. She has it compounded at a specific pharmacy and its about $50 for 90 days worth. The appointment is around $240 for 30 minutes and then you have to have a 15 minute appoint every 6 months to renew the prescription.

I got a lecture about my diet. The doctor was insistent that I give up wheat. No kidding. If it were that easy I would have done that by now. I'm working on it anyway.

I will let you guys know how it goes.

Kim
Posted 3/20/2016 10:00 PM (GMT 0)
Thanks so much for the update!!

That's a pretty good price for 90 days' worth - I paid $114 "free shipping" to Irmat Pharmacy last year (they're one of the recommended LDN pharmacists)

I'm really glad you got the prescription and hope it proves effective for you!!! What dose are you starting with? What time of day were you told to take it?

Good luck!!!

Please continue to keep us updated!
Posted 3/20/2016 11:09 PM (GMT 0)
I just asked my regular Dr. to prescribe it for me. This was before I knew I had lyme disease...but was in pain.

Do you need a specific Dr. in the U.S. to prescribe LDN?
Posted 3/20/2016 11:14 PM (GMT 0)

Girlie said...
Do you need a specific Dr. in the U.S. to prescribe LDN?

By the time I was ready to try LDN, I was seeing my LLMD and asked him for the Rx. My GP isn't interested in it.

Not all doctors are interested in prescribing off-label use of meds.
Posted 3/21/2016 3:36 AM (GMT 0)
Llmd did it for me...have yet to fill it
Posted 3/23/2016 3:27 PM (GMT 0)
She had me start at 1.5mg which didn't do anything. I'm using 3mg right now, but will probably up it to 4.5 soon.

She told me to take it at bedtime until i found out how it affected me. I switched to midday because I was having trouble with my sleep and saw that it gave some people insomnia.

I still have pain, but not as bad.

I forgot to mention that she told me that the way it works is that it blocks the opiate receptors which forces your body to produce its own opiates. That's the reason why you have to be off them. The combined effect would cause problems.

Kim
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