Extremely upsetting - neuro refuses to write prescription for LDN!

[LillyMS]

I've had MS for approx 12yrs and have been on the Dr Roy Swank Diet (plant based since I'm a vegan). This diet is AMAZING wish I had done it sooner! Back on topic, I requested to have prescription written for LDN (low dose naltrexone) but my neuro refused to wrtie it!!

 

This is disgusting IMO. I now have to find a GP and have him write it or another neuro to write it .I am done taking these highly toxic MS drugs and am doing the Dr Roy Swank or Dr John Dougall diet and wish to get on LDN ASAP!!!

 

Anyhone else have such a neuro that refuses to write LDN? This is totally unacceptbale and higly upsetting.

Edited 2 Apr 2014, 9:38 pm by Marina
: To remove Dr's name. Please see forum rules regarding naming doctors.

[Nindancer]

LDN is still off-license and that's why we can't get it on the NHS.

 

As a likely PPMS'er, I don't even get DMDs so yes, I think LDN should be available on the NHS

 

The LDN Trust are currently making a documentary which should be a step in the right direction

 

My neuro even agreed with me that it was on the 'kinder' list of drugs that MS people get when I pointed out all the rotten side effects of meds I'd tried to find little in the way of positives!

 

Good luck finding a GP

Sonia x

[Mal]

Yeah thats right its not licensed for treating ms in this country

 

reading some of he blogs , they say its fairly cheap to buy

 

there is a list of suppliers on this blog HERE . ;)

 

Mal

[LillyMS]

Thanks for the fantastic link! :)

[LillyMS]

Nindancer, what state is your neuro located in? I cannot stand my neuro. He is HORRIBLE!!!

 

I really want to go see Dr Dennis Bourdette shown in below vid. He is aware of the study conducted by Dr John McDougall in relation to diet and MS (highly similar to Dr Roy Swank's study):

 

http://youtu.be/dGk18OBTw_s

 

... but he is in Oregon (I reside in FL swamp pit). I have already seen a Dr at Johns Hopkins in Baltimore, but am looking for a neuro has basic common sense and won't tell me Dr Roy Swank is a "nonsense".

Edited 4 Apr 2014, 3:32 pm by Marina

[Marina]

Lilly

 

We're all in the UK here, not in the US (as indicated by the name of the forum: "MS People UK"). Over here, not many neuros will prescribe LDN, mainly because it's unlicensed and is not officially recognised as an MS treatment. Many of us have to get private prescriptions via online doctors who specialise in such prescriptions. As you're in the US, you might instead like to try this forum which is specifically for LDN and is located in the US: http:// ldn.proboards.com/ (you might have to copy and paste the link as it gets messed up by our abbreviations feature).

 

Meanwhile, I've had to edit your posts to remove the names of doctors for the reasons stated in our Forum Rules:

Don't post names of doctors and nurses etc, regardless of whether you think they're good or bad. Instead, refer to them simply as "my neurologist/GP", or "Dr X" substituting the X for the first letter of the doctor's name. They may not want their details to be "out there" for the world to see on the internet. We also have to protect the forum in the event a topic in which a medical professional was named turned negative, which could leave us open to action for libel or defamation. The only doctors where it wouldn't matter (as long as not defamatory) are the ones like Dr Tom Gilhooly or Dr Bob Lawrence, both of whom commonly deal on the net with LDN, for instance. Members are, of course, free to share the names of their Neuros, Nurses etc via the PM facility.

[Loybhoy]

I found that my GP in Surrey was prepared to prescribe LDN because he had a note from my neurologist saying it wouldn't do me any harm.

I am now living in Hampshire and asked my new GP to prescribe it but he was told by the Hampshire Prescribing Committee not to touch it. However, he is still keen to help me and will prescribe if he has a letter from a neurologist. In the meantime I am getting LDN from Clinic 158 on private prescription and dispensed by post from Dicksons Chemist Rutherglen Scotland.

I am sorry your Neuro is not prepared to endorse it. Could you change your Neuro?

I have been taking LDN since October 2009 for PPMS and it has halted the progression.

I couldn't be without it.

I hope something turns out for you.

[LillyMS]

I have already FIRED my neuro and will never go back to him. I have emailed/called numerous GP's and found several local to me and on some of their websites it says they use LDN. Thus, I think I might get lucky next week and get presciption, hopefully! :)

 

However, I'm very confused what dose is best. Since I am no longer going to be taking any MS drugs, I REALLY need to ensure I take the most "effective" dose of LDN. It seems this would be 3mg??? I would rather start with 3mg instead of 1.5mg if that's the case. What dose are you using?

 

Any advise on this would be super appreciated, thanks.

[Marina]

With LDN, it's not a matter of more being better and it can often be a case of less is better. The general advice is to start on 1.5 mg and slowly increase every 2-3 weeks or so up to a maximum of 4.5mg, and decrease if one feels better on a lower dose. Some people start on or go back down to as low as 0.5 mg. In the UK, Dickson's Chemist have LDN in liquid form which allows for more incremental dosage than the standard 1.5, 3, 4.5 mg capsules. The most "effective" dose is the one you feel best on.

 

Another thing to bear in mind is that the principle behind LDN is to help prevent or lessen relapses/progression. Some people also get symptom relief but not everyone does; any symptom relief is a bonus. Some people give up on it when they get no symptom relief, but haven't yet had time to judge whether it might be helping with relapses/progression; it could be a year or more before one knows if it's helping. If no side effects are felt (side effects tend to be rare when at the right dose), then there's little if any risk in continuing with it.

 

More on dosage here:

http://www.ldnresearchtrust.org/sites/default/files/ LDN%20Information%20Pack%281%29.pdf

(need to copy/paste the link in full)

 

General information on LDN:

http://www.ldnresearchtrust.org/ - UK (and more information on their Forum)

http://www.lowdosenaltrexone.org/ - US

http://crystalangel6267.webs.com/

http://ms-people.com/forum/links/category/13- ldn-low-dose-naltrexone/

[LillyMS]

Thanks, but what if I am asymptomatic (asides from the right side of my face cramping "getting stuck" for 20 min or so sometimes when smiling too hard) and not affected by MS? I NEVER get fatigue and run 3 miles almost every day. I had severe progression in my disease based on my MRI scans. I have extensive disease even in the brain stem. My MRI looked REALLY bad. However, as noted... I feel FANTATIC as if I don't even have MS. Knock on wood, hope it stays that way!

 

Thus, the comment you made about "me feeling better at certain doses" won't be effective way to determine dose sicne I feel awesome all the time. My HUGE concern is that I must stop progression and to to everything possible to avoid getting more lesions. I was on tysabri for 1 year and then tecfidera for 1 year and had NO new lesion during that time. Now I am off all MS drugs and wish to ONLY take LDN and continue my vegan diet. I've had no progression past 2 years and need to keep it that way.

 

... so I am still VERY confused whether taking 4.5mg rather than only 1.5mg would help stop new lesions? Based on that article it seems I will need 4.5mg? So I feel like I should start with higher dose, such as maybe 3mg, in that case, why waste time.

Edited 6 Apr 2014, 11:48 pm by LillyMS

[Marina]

By the sound of it, you're in near enough full remission with no symptoms whatsoever (aside from occasional face cramping).

 

All of us with MS would love it if we could stop progression in its tracks and avoid getting more lesions. But, unfortunately, there are no meds that guarantee to stop progression 100% and no single med that will help all MSers all of the time.

 

Either way, the advice is to start low and build up. None of us can say what an "effective" dose might be as, like I said, it's different for everybody - some people feel worse on higher doses whilst others don't. That's the way LDN works and why it's "Low" Dose Naltrexone, with the lowest dose working better for some people. If a dose is too high for someone, they may feel an exacerbation of some symptoms; they then find lowering the dose back down again works better for them.

 

The way most people know it's helping is by some form of symptom relief however little it might be, or by a lessening of relapses/progression over time. If you're not having any symptoms, you may not feel any difference in taking it but it might still be working to prevent or lessen future relapses.

 

Many people start on 0.5 mg. You could start on 3mg, but it's only a 2-3 week wait to increase from 1.5 to 3 and another 2-3 weeks to increase from 3 to 4.5 mg.

 

http://forum.ldnresearchtrust.org/index.php?/topic/2166-confused-how-do-i-know-what-the-right-dose-is/

[LillyMS]

My last attack I had was 7 looooong years ago. Which, if you saw how bad my MRI scans were... would surpirse you! I've had no new leions past 2 years though due to being on tysabri for 1 year (JC positive so had to get off tysabri). Switched to tecfidera but just stopped taking it recently due to fear of cancer down the line from it. I do NOT trust big pharmas and their drugs! Call me paranoid or whatnot but I prefer a more holistic approach if possible which is why I will be taking LDN as they say it is not toxic unlike tecfidera.

 

In conclusion it appears that 4.5mg is what is recommended for MS and would hopefully do best at preventing new lesions than a 1.5 or 3mg I guess. I will be trying to setup appointment with this following MD... you can see his website here which mentions LDN and that he uses it: http://www.drdach.com/Low_Dose_Naltrexone.html

 

I'm eager to setup appointment with him and see what his opinion on this is. I will keep my fingers crossed I have good luck with LDN. I had horrible reaction to the gadolinium contrast dye used for MRIs (that stuff is also toxic!), so now I get MRIs without contrast. I just HOPE nothing important (such as progression that isn't showing up) is being missed because of this.

Edited 7 Apr 2014, 1:45 am by LillyMS

[PaulX]

LDN availability is a whole can of worms.

If you can get a GP or Neurologist to prescribe it, you are extremely lucky.

 

Most of us have to go the private prescription route.

There is a little bit of hoop jumping, but once that is done it is quite straight forward.

There is plenty of advice on this forum about LDN.

I have written at length about it some few years ago.

 

And more is less..

I have found, by trial and error, that 3ml is the right dose for me.

 

Paul

[LillyMS]

Good news, I have made appointment with an MD (they prescribe LDN) in Fort Lauderdale, FL (an hour from where I live). The office visit is ONLY $65. That is crazy cheap!!! Most other places that I called who offer LDN charges $300+ and do not accept insurance! I don't understand why this place is so cheap? Not that I'm complaining LOL. I'm going here: http://www.oceanhbo.com/

 

Good bye and good riddens to TOXIC tecfidera!!!! :)

 

I will be giving LDN a try for 6 months and will then have an MRI to see if there are any new developing lesions. I will be doing MRIs every 6 months now instead of yearly. I REALLY REALLY REALLY hope LDN will work.\

 

EDIT: The place I'm going to is using some form of hyperbaric technically for MS. I'm not overally familiar with that, looks interesting I suppose.

Edited 9 Apr 2014, 2:04 pm by LillyMS

[Stumbler]

The Hyperbaric reference is to Hyperbaric Oxygenation Treatment ( HBOT), which is the breathing of pure oxygen, whilst you are in a pressurised environment - similar to a decompression chamber.

 

The theory is that it allows the body to absorb more oxygen into the bloodstream, which is then used around the body.

 

There is no technical trial-based evidence for this treatment, although there is anecdotal evidence to support it.

 

[LillyMS]

I am very disappointed. I just got back from my appointment at this clinic which charges $65 for first visit: http://www.oceanhbo.com/

 

The MD I saw there prescribed me 1.5mg of LDN but then proceeded to tell me if I do well on 1.5mg (during the first 2 weeks) he will then outfight REFUSE to ever increase the dose!!!! This is crazy and unacceptable. I am no longer taking any MS drugs. Thus, I do NOT feel comfortable taking such a low dose and prefer at least 3mg or 4.5mg of LDN as that is the optimal dose for MS (1.5mg is fine for the first couple of weeks but then it should be increased if you are hanldling LDN fine). I am VERY CONCERNED that a 1.5mg will not do nearly as good of a job at keeping my MS from progressing as let's say... a 3 or 4.5mg. Am I incorrect with assuming this??

 

The MD I saw today didn't even know what gelatin is!!!! I told him my pharmacy will give me veggie capsules instead of gelatin capsules since I do not want to consume gelatin, but he had NO idea what gelatin is (he asked his assistant what gelatin is). That is crazy!!! Seriously, what on earth?? I was NOT impressed with this MD who had very poor credientials and is more or less is an "assistant" to the hyperbaric treatments offered there. The MD I saw there was the one from Ecudar. He also told me he does NOT recommend MRIs because it can have a deterimental affect regardless of whether contrast dye is used or not. Anyone heard of this before???

 

Why do I feel like I'm from another planet? "MRIs are deterimental"???? Oh really!!! He lectured me when I told him I will be getting MRIs every 6 months without contrast because I OBVIOUSLY need to keep a very close eye on any potential new lesions now that I am off all MS drugs and testing out LDN. This is just common sense! When I told him "I feel great and am asymptomatic"... he asked me if that's the case WHY am I wanting LDN. What do you think!!!! Obviously, to hopefully help prevent my MS from PROGRESSING of course, That's why!!

 

I am very upset I just lost $65 to see this guy. I am very low on money right now.

 

Due to this bad experience, I just made another appointment with another MD. I am seeing this following other new MD next week: http://www.drdach.com/Low_Dose_Naltrexone.html

This new MD charges $375 (doesn't take insurance), but at least HOPEFULLY this new MD I am seeing next week will be more knowledgable. I really cannot afford this, but I don't know what else to do. This new MD has a radiology background, so hopefully he will be more EDUCATED than the MD I saw today. I need to get another valid opinion on the most effective doseage of LDN to help prvent MS from progressing.

Edited 10 Apr 2014, 6:23 pm by LillyMS