Into the Big Leagues
Low dose naltrexone (LDN) is able to do for some people with intractable pain what opioids and other drugs can’t do – reduce the pain. Those drugs have something LDN doesn’t, however, – FDA approval.
Quality control questions have dogged efforts to advance the field
You can’t prove that LDN works, however, until you can identify what you’re testing and with one compounding pharmacy producing it’s version of LDN and another producing it’s version of LDN – standardization – a key factor in any scientific analysis – has pretty much gone out the window.
Compounding LDN is not easy. A speaker at the recent LDN conference went through a surprising number of steps in the process that can go wrong. There are certainly good LDN compounding pharmacies, but the quality of preparation across all the pharmacies is clearly shaky.
If LDN is ever going to move from a niche product to a product that really makes a difference it’s got to be standardized.
Immune Therapeutics has been acquiring the patents, the orphan drug designation and getting the clinical data they need to get the LDN ball rolling at the FDA but until now they’ve been missing one critical factor: a pharmaceutical grade product.
Top Grade Compounding Company
“Our products are recognized as superior preparations due to our process validations that mirrors that of a pharmaceutical manufacturer. “KRS Global Biotechnology
How to produce that? By going to a compounding company that has such stringent processes that it provides compounded preparations of common drugs that are in short supply to hospital pharmacies. In this case, that means a company in Boca Raton, Florida named KRS Global Biotechnology.
Pharmaceutical grade LDN is available through KRS Global Biotechnologies
KRS’s website is littered with claims touting the lengths they go to ensure the quality of their products. “Very few” compounding pharmacies in the nation, they state, can match their quality control. The rigor they employ is similar to that displayed by pharmaceutical drug companies. They provide certificates of analysis for all their preparations. They claim to be at the forefront of their industry and that’s apparently why Immune Therapeutics turned to them to produce what appears to be the first pharmaceutical grade LDN.
Win-Win Situation
I don’t take LDN and am not familiar with its cost, but patients don’t appear to be sacrificing low cost for guaranteed quality. KSR is providing LDN at a dollar a pill in the following amounts: .5 mg., 1 mg., 1.5 mg., 3 mg. and 4.5 mg. I was informed that the most popular dose is easily 4.5 mg. and the 4.5 mg. tablets cost the same as the .5 mg tablets – one dollar.
This seems like a win-win situation. Patients get quality assurance for the LDN they buy and Immune Therapeutics has a product the FDA has stated they can use in clinical trials.
Immune Therapeutics
“This agreement with KRS Global will help people looking to purchase a formulated product while protecting Immune Therapeutics’ intellectual property. We expect that the payments to Immune Therapeutics under the agreement with KRS Global will allow the company to provide funds to Cytocom Inc. so they can complete clinical trials with the FDA for Low Dose Naltrexone in Crohn’s Disease, MS, HIV/AIDS, in addition to other indications.” Seth Elliott, President and Chief Operating Officer of Immune Therapeutics
Immune Therapeutics is conducting some LDN trials in Africa, but the next big step is to start them in the U.S. with an eye to getting FDA approval. One way to support LDN development is to simply buy your LDN through KRS; Immune Therapeutics will use the funds derived from purchases at KRS to support their clinical trials.
The LDN field takes the next step.
Immune Therapeutics has the exclusive rights to develop LDN for a wide variety of disorders including Crohn’s Disease, IBS, prostate cancer, lymphomas, infectious diseases such as chronic herpes virus infections, Fibromyalgia, Parkinson, chronic infections due to the Epstein-Barr virus, and chronic inflammatory conditions including chronic fatigue syndrome. The most
The most likely targets for trials at this point are autoimmune disorders such as Crohn’s disease, rheumatoid arthritis and multiple sclerosis, as an adjunct treatment for cancer and as a complement to antibiotics in the treatment of infectious diseases. Cytocom, a spin-off company from Immune Therapeutics that is in charge of conducting clinical trials expects to begin Crohn’s trials this year.
Purchasing LDN
To purchase LDN from KRS Biotechnology have your doctor send a prescription from his/her office to this fax number (561 989 1950). (The prescription must be sent from the doctor’s office.)
Looking for a doctor that knows about LDN? Check out Immune Therapeutic’s LDN prescribing doctor locator program here
Check out Health Rising’s LDN Resource Center for Fibromyalgia and Chronic Fatigue Syndrome
Health Rising is not associated with Immune Therapeutics or KSR Biotechnologies in any manner
I have been getting my LDN from Skip’s Pharmacy In Bocca Raton for $0.5933 a pill, the shipping was $6.95. I cannot remember past costs and have been taking it almost 6 years. I just got a new order.Skip is an advocate for LDN and attends a lot of the meetings. He will return a call in 24 hours if not there. LDN has actually put MS in remission. It helps a lot with the pain of FM and there is a site with a data base of results.
You can read a lot about LDN on the net, just key in Low Dose Naltrexone.
Jared Younger has been doing studies on LDN a bigger one coming soon.
The history of it is wonderful and how a doctor in NYC used it at 60 mg for addicts and saw them getting better from other illnesses. His daughter had MS and he tried her at low dose and she went into remission. I don’t know how she is doing now, Dr, Bahari has passed away. I was in contact with him at one time but just did one prescription, was kind of afraid of it and then more research came out. I took all the research to my GP here and he wrote for it. I would not stop it. I have noticed no side effects. I did have vivid dreams at first but good ones. I have trouble with sleep anyway so I don’t think that entered into it. Some people have trouble with both but you have to start low and work up. I now take 3.0 morning and night, it lifts my mood as well as helping pain. I had a list of sites about it I will see if I can find it.
Skip at the Boca pharmacy is an expert on LDN.
I also have been purchasing LDN from Skip’s Pharmacy in Boca Raton, FL. Skip is extremely knowledgable on LDN and has personnally answered all of my questions. I am now up to 4.5mg twice a day. The difference in my cognitive ability is amazing and my pain has decreased – especially the migraines.
Dear Fern:
Do you have Fibromyalgia and is that why you started LDN? I have it but also have many other things which cause me pain and may or may not be related to Fibromyalgia.
how much are paying for 90 pills?
That’s great you found you a good pharmacy that is knowledgeable regarding LDN 🙂
LDN is often not recommended by your specialist as it can hide pain or inflammation in your other diagnosis. I.e. serious Crohns. LDN should not be used if you have kidney issues. I have no specific diagnosis for inflammation, however since I am incitric factor, I get inflammation when low on B12. LDN supresses this feeling and very often I find that my inflammation is pretty far gone, before I react. So I do understand specialists on this recommendation. I have FM and 3 more insignificant diagnosises. Summer I am 80-90% better, Winter 40-60% better and Spring/Autumn somewhere in between.The only downpoint to LDN is that you cannot double the doseage when your basic condition worsen, i.e. Winter. In Norway where I live, only one pharmacy manufacture LDN at 3 mg.
Marg I emailed Dr. Skip today, he gave me a list of doctors who will work with patients that want to start the LDN. What a nice man he is and I was very impressed how quick he got back to me – it was like he was sitting there waiting for me to email him! LOL!!
I found the paper I was looking for. I do not know if all these sites are still up or not.
Her goes:
lowdosenaltrexone.org
ldn-help.cpm
ldn-database.com
en,wikipedia.org/lwiki/Low_dose_naltrextone
skipspharmacy.com
Thank you so much for your input, Marg. I am now interested in it. I have chronic herpes, FM, and CFS, arthritic pain, Nueropathy have had EBV, and lord knows what else. I also have a friend with MS and will most definitely pass this along to her.
Thank you, Cort and Marg <3
i have classic fibromyalgia and cfids/me for many years. i have tried ldn and it only made me worse.
Same here but I might try again going up .5 mg/mo instead of per week. Since no one would prescribe for me I had to obtain from overseas.
This is not necessarily a harmless med despite the “low dose” categorization.
Many people it appears have to start their dose low and work their way up. I do know some people who started out too high – really regretted it – but then took their dose down and were able to work their way up and have really good results.
No drug is harmless Steve. It is interesting that during the original trials of the 50 mg dose that beagles were dosed at 5000 mg to 7500 mg a day with slightly elevated liver enzymes as the only result.
LDN is more benign and safer than aspirin.
Just a note. Some patients worsen at first with LDN and then passes. I got worse fibromyalgia the first 4 weeks. I was prepared for it though as I had read up on it before starting. Your immune system has been working dysfunctional for how many years. It does impact when asked to work normal. This is also amongst other reasons why starting on a low dose is recommended. I started at 0,75 mg. Doseage should never be increased until the first/last one is tolerated. Luckily I only had 1-3 days of increased symptom om the next doseage increases.
Like Marg, I am a loyal customer of Skip’s Pharmacy in FL. I get 4.0 mg capsules in a 90 day supply for about $70. I trust proprietor Skip very well. LDN is quite effective for me, and others whom I have encouraged to approach their doctors about taking it. I will be anxious to hear Skip’s thoughts on this company and the future of LDN.
I first happened onto info about LDN when I was being eval’d for MS. STarted taking it for what I thought was MS. Whether I do or do not have MS, it has helped me tremendously. I am dx’d with Fibro and with RSD. Pain and fatigue are lessened for me. I don’t get sick as frequently and when I do, I recover quickly. My allergies are alleviated. The RSD has remained stable, manageable.
Everyone is different. I am so glad to have LDN because it is helpful to me. I would love to see everyone at least try it out. I HOPE this is a good thing, this company gathering up patents and SAYING it will standardize and lessen costs. I’m skeptical.
Congratulations on finding LDN and Skips. We’ll see how it all turns out. I imagine that it will be quite difficult to conduct clinical trials and still offer LDN at such a low cost.
On the other hand, clinical trials are what’s needed to get LDN out to the many people that might be able to benefit from it.
So long as good pharmacies like the one you mention are present, though, I imagine LDN will always be available at low cost.
I forgot to check the block for new posts by email and have to post a comment in order to do so. Sorry.
Nancy I check the box every time when I post but I’m never notified. I must be missing something, keep meaning to ask Cort about it. I just come onto the site from time to time to see if there are any new post 🙂
Hi Cort,
I was thinking, why don’t you interview Skip Lenz about LDN. As far as I know, he knows the most about LDN since Dr. Bihari passed away a few years ago.
I was also thinking about cost, the lower the dose the lower the cost. I started at 1.5. but I don’t remember what I paid then. Now 3.0 is about 60 cents a pill from Skip..
I have not spoken with Skip for a while but in the beginning he would always talk or retuen the call if away..
It also comes in a cream for those that may be sensitive to a pill.
Marg
One more thing, LDN is off label. Some doctors claim they cannot write for it but that is not true.
How did it make it worse? I was going to get a script but am hesitant. Thanks
For your input all.
Dr Enlander provides his brand directly to his patients for $20/mo (30 pills, 4.5 dose). I’m very happy with it.
How’s that working for you Angela?
I’m currently under his care, I’ll be talking to him about ldn in the next appt.
Did you stat from 4,5?
I tried it at .5 for over a month. I got 4.5 and put in a measured amount of water and figured out how to divide to lower the dose. Makes it really inexpensive. I got it from a compounding pharmacy in Phoenix,AZ and for less than $1.00 a pill. (There are sites on the Internet telling you how to do this.).
I found it really helped my pain and improved my sleep. BUT….it causes severe depression. I could not continue it. It was not worth that side effect.
Issie
Issie, I wonder if you got a depressive reaction because your dose was too high? I started at 0.1mg and worked quickly up to 0.3mg, at which dose I got great daytime energy and my brain fog went away. It’s taken me 3 months to work up to my current dose of 0.9mg.
Hi Marg, I read that LDN comes in a cream. Is it sold at Skip’s Pharmacy?
Yes Skip can put a cream in doses. I cannot think what they are called.
Hi Marg, thanks for the information about the LDN cream!
Michele, It can be compounded in a liquid. In fact, my very first prescription was compounded in a liquid by my local Walgreens pharmacy. The liquid has to be refrigerated. I immediately went to pill form because the liquid was inconvenient if one travels.
I tried LDN for a while and noticed no improvement at all.
Is low dose LDN available in australia please
Yes Kerry, it’s. I’m in Perth & on LDN
If these new guys do their trials with the wrong fillers they won’t get good results, best make sure they are using the right stuff.
Hi Dawn,
I have Me/CFS plus a diabetes 2. I have been taken the LDN 4mg for 13 months.
I had a local compounding pharmacist do the first 4 mo. Then another called McGuff in Santa Ana,ca. I reordered the second time for another 3 months. Well the last 3 months I have got total body pain with diarrhea a lot in these last 3 months. I thought I had the stomach flu Dec.14 and Jan.15. I called them to find out what filler was in the pills. They sad “lactose” but that they can use another filler called avacel from pine tree. I had a feeling about this ldn. this last 3 months pain from head to toes and nerve pain under the feet. I took the pills to my chiropractor for muscle testing and sure enough the body said NO!. I stopped taken it since it was making me worse. Plus 2 auto accidents with 2 yrs. of whip lash. Pain is constant in the neck let alone else where . Hard to sleep with this neck pain.
I have also seen depression and no energy plus so much pain. I am scared to trust a 3rd compounding pharmacy??!!?
How’s anyone else have had MORE PAIN then usual with ldn ??
Danielle
How could ANYBODY put lactose in the pills that are serving this population? Unbelievable….
Hey Danielle I would call up BRS Biotechnologies and just ask them (888-502-2050) or you can email them. http://www.gbtbio.com/contact-us/
I would be gun shy as well.
Hi Cort,
Thanks for the info BRS biotechnologies. I will call and talk with them.
I don’t know enough about the politics behind all of this but I have a few questions. If this organisation takes out patents and does the trials, does that mean that in future they can control production and also control the prices? Might it no longer be a cheap drug?
My reason for this cynicism is that here in the UK the price to the NHS of Temazepam has rocketed from around £3 to £10 per prescription because a few drug companies stopped producing it. It’s shown me how artificial prices can be. As a result, doctors have been told to change their patients where possible to the cheaper Z-drugs.
It’s no good getting the tests done if we then cannot afford the medicine.
Diane
Dawn if LDN was an approved medicine we in the UK would be able to get it on the NHS. As it stands, because it is a specials medicine, prescribed as off label, any pharmacy can charge the NHS what they like (have heard of one charging over £500 per month). And quality is an issue too. Many are getting their LDN from Pharmacy Xpress in the UK as they use a specials lab to supply the highest quality of LDN and can provide a certificate of analyses etc. Re capsules they don’t bulk it up with fillers or colourings, same with the liquid formulation. For more information visit http://www.ldnsurgery.com
Since LDN is a compounded product and can be compounded quite cheaply I don’t see any way Immune Therapeutics can affect how much it costs. It’s for this reason that more drug companies have not entered the market I imagine.
Has anyone heard anything about this natural product that increases Orexin?
http://www.orexinal.com/orexinal.html
dawn, if LDN was an approved medication we would get it on the NHS here in the UK. As it stands, with it being an off label ‘specials’ medicine a pharmacy can charge what they like to the NHS – heard of one charging more than £500 per month! And quality is an issue too, this is why many are using Pharmacy Xpress who uses a specials lab to supply the highest quality of LDN (not jam packed with fillers, colourings etc) – same applies for the liquid formulation. You can find out more by visiting http://www.ldnsurgery.com
1) Klimas’s dosing for me:
1.5 mg every night for 1 month
3 mg every night for 1 month
4.5 mg every night for 1 month
2) Some doctors start at a much lower dosing schedule.
3) My recommendations is 2 liters of water EVERYDAY before starting and continuing there after
4) Make sure you are not constipated before starting…
5) Benefiber 2 tablespoons daily was needed. If you you get backed up, you could feel more side effects. Avoid this challenges by doing step 3 and 4
6) DON’T GIVE UP ON THIS DRUG! You may feel worse before feeling better. Get beyond side effects if you have them. It helps build your immune system which you may not feel that benefit so proceed anyway.
7) Make sure it is a compounding pharmacy and not a place trying to crush 50 mg and 100 mg tablets into the low dose we take
8) I LOVE THIS DRUG. My pain became under control. My immune system became stronger. My sex drive increased. My joints moved better and it is cheap…
I hope this helped… Francesca
Hi Francesca,
Thanks for your post on LDN. I have a few questions . . .
Will you please give the reason behind your recommendation for two litres of water everyday? Since starting LDN, there has been a change in the odor of my urine. Coincidence, or not — I have no idea.
My physician is proceeding slowly in prescribing — 0.5 mg for a month, then 1.0 mg for a month, and now 1.5 mg. At the 1.0 dose, my joints also “moved better”. But, I also got a full-blown case of the flu which lasted more than three weeks, the first episode in more than 25 years. Now, only a few weeks after recovering, it seems I’m getting a cold, the first one in almost 10 years. So, obviously something in my immune system is changing. In your opinion, is it possible that the LDN is over-reacting in modulating my immune system, and that in time things will settle down? I’d hate to add frequent colds and flu to my list of ME/FM and RA symptoms.
Karen
1st we are usually 1 pint short on blood
2nd all of these drugs are serious… a few months ago a UTI turned more than once into a compromised kidney function situation and the minute that happens – all drugs and i mean all drugs are off the table
3rd constipation set in for me real bad. I have found that constipation will worsen any possible side effects on a drug therefore making you want to stop it, therefore failing at succeeding.
4th water will help usually with much salt keep us vertical
I hope that helps, Francesca
Karen, I do not know to that over reacting to the immune thing but I SWEAR BY LDN… Don’t give up on it.
Francesca your outcome sounds what I’m hoping for I’ve been on ldn 22 days ..have RA am getting slight improvement. how many days did it take for improvement and did it get worse before better. how long have you been on them now… rose
I am very interested in trying LDN for FM and RA but first I have to stop my opioids and I’m not sure how to go about that. I have been on them long enough that I need to wean off slowly and I don’t want to go to a pain recovery clinic to do this simply because I’m concerned it will go on my record as being treated for addition. Can anyone advise me on this? Is this something I can do myself?
Guess what? The LDN Research Trust ball is rolling in regards to doing the first ever app for researching globally for 174 different auto immune systems.
The app is free and is available at http://www.ldnresearchtrust.org if you are taking LDN – or even considering it – get the app first!
That way you can monitor your condition and whether or not it has improved since trying it.
Being a part of this study will make a huge difference in regards to getting it getting it passed by the FDA.
Because LDN has no patent, is cheap, and works…the big pharma really don’t want you knowing about it.
PLEASE. Check it out and check out the app…be a part of changing how meds that DO help get into the system, instead of just being clogged with the huge pharma options!
has anyones LDN STOPPED working after a 2-3 months? it started working for me OVERNIGHT, i felt so much better that i cannot believe it STOPPED working OVERNIGHT too? i tried taking it again after a year but NOTHING! no, it CAUSES headaches now and does nothing else! what a bummer!!!
i cannot believe how ILL i am again!
Darn! It’s so weird how that happens….You know what – why don’t you call up Skip at the pharmacy mentioned in the comments above – he sounds like he has a lot of experience with the drug.
Hi Dona, I had this experience too, but discovered it had to do with an immune system trigger (mold, I cleaned up my basement). I kept taking the LDN and after a few weeks my condition cleared up and I’m back again at a pain free state, energy returned.
I hope you kept taking the LDN, would be a shame to let go of the good effects because of some bad event.
Judi:
Please do not try and go off your opioids without help from a doctor. And you shouldn’t accept any one’s advice except your doctor when it comes to something this challenging. You really need to do it right, but you may not have to be hospitalized.
Your medical record already shows you are taking opioids, so I’m not sure if going through withdrawl in a rehab facility would rise a red flag. In fact if you withdrew from opioids to go on LDN it might put you in a positive light!
Either way, good luck!
Lorraine I spoke with my pain management doctor today and he said I would indeed be under a doctor’s care when stopping the opioids and it is outpatient. The LDN sounds promising I sure hope it works for me I would like very much to be in a positive light. Thank you for the advice and encouragement.
Do you have to come off opiates before starting ldn?
Yes, it’s an opiate receptor blocker.
Immune Therapeutics has the right to commercialize LDN many pharma companies do this today and the FDA even gives benefits to companies that do this under 505B status which the FDA has agreed to for Crohn’s Disease. In addition to the 505B status the Company has been granted orphan drug designation. (which Skip incorrectly stated the company did not have)
The company also has patents surrounding various indication.
Dr. Watson of Mayo Clinic stated at the American Academy of Pain Medicine on February 24, 2012 that he “believes that the biggest issue is that the low-dose formulation of naltrexone used in this study is not commercially available and has to be compounded specially for patients. “That’s a big problem.”
.
In anticipation of starting pivotal phase III trials in the United States and Africa Immune Therapeutics was required to formulate LDN to FDA standards.
I am sure most of you have reviewed the publication surrounding LDN over the last five years and have noted that the biggest concern of many researchers and doctors is that the lack a commercially available formulation that affects outcome of treatment.
Immune Therapeutics believes we have now provided an answer to this issue by licensing our formulations to KRS Global Biotechnology; a 503B FDA registered Outsourcing Facility located in Boca Raton Florida.
According to the IACP, there are 56,000 community-based pharmacies in the U.S. About half of them directly serve local patients and doctors. Some 7,500 compounding pharmacies specialize in what the IACP calls “advanced compounding services.” Some 3,000 of these pharmacies make sterile products, but there are only 45 503B registered outsource facility approved by the FDA in the United States of which KRS is one and their latest registration with the FDA is as of 1/15/2015
This collaboration between Immune Therapeutic and KRS Global has focused our attention on the fact that the compounded product being prescribed today appears to have significant variation in quality and dose control. KRS Global can deliver comprehensive analytical reports to ensure optimal quality assurance (Pharma Quality Assurance) and quality control (Pharma Quality Control) throughout the whole production processes. Quality analyses are carried out at all stages of pre-, in- and post-production and will be available.
In addition to the quality control of KRS as part of the agreement Immune Therapeutics requires all manufactured batches be test again by an outside third party lab prior to shipping.
KRS has available LDN tablets at the following dosages .5mg; 1mg; 1.5mg; 3mg and 4.5mg.
The most important reason for introducing blister packaging is to offer patients a clearly marked individual dose. Moreover, the drugs that were not taken remained in the original package and were fully protected against adverse external conditions.
Noreen
Does this mean (patents and orphan drug status) that your company will not be seeking to prevent compounding companies that provide LDN from doing so, and will not be seeking to control the pricing such companies offer for this medicine?
Please can you clarify?
Cort – I notice there is still no reply to my question for Noreen 10 days later. Any chance you can get her to respond?
I know how much you do so no matter if you can’t – a complete non-response can be read as an answer anyway.
Hi Helen,
I believe the company has patents for the formulation of this pharmaceutical grade pill and other compounding companies will be able to do as they will. This company, however, will be able to conduct clinical trials to get FDA approval for it’s formulation. I don’t know if other companies can do that. At least that’s how I read it…I am not an attorney by any means.
I take LDN for ME/CFS. I actually take 12 mg daily – divided into 2 doses. There are no published reports of dosing studies, so no-one knows what the correct dose is for most indications/illnesses but especially in people with ME/CFS, where I’ve heard of anecdotal reports that people need higher doses. I didn’t respond to 4.5 mg. My “allergies” didn’t get better until I was on 9 mg. Now despite being nearly 60 I am more fit and more active than I have been at any point in the last 26 years. I can’t prove it’s the LDN that’s made the difference for me – that’s why we desperately need clinical trials to prove how effective it is so that it is licensed and any doctor could prescribe it routinely. Before that though, we need reports in medical journals just describing people who have responded well to LDN – especially for ME/CFS as there are no reports at all of people with ME/CFS improving on LDN.
If you have ME/CFS (chronic fatigue syndrome, myalgic encephalitis, CFIDS) and have improved a lot with LDN, and would be interested in me writing your case history up for a medical journal, please get in touch. I want to write up my own history along with a few others to show how people can improve with LDN.
mjbtd8@phonecoop.coop
Sadly I can’t reply to anyone except with ME/CFS as I don’t know about other conditions.
At the LDN Research Conference I heard some doctors talk of some patients doing well on higher than expected doses.
As someone with chemical sensitivities I wonder what you meant by “allergies”???
Jarred Younger has a trial on tap to tackle dosing questions.
Hi Cort
I had CFS for 13 years with just irritable bowel-like problems. I then got gastroenteritis, which caused what I would call a true allergy to wheat (probably gluten) as even small amounts caused me to have a tight chest, palpitations, feeling faint and severe headache, followed by such severe constipation that I couldn’t sleep for a week because of stomach cramps. The gastro-enteritis also caused intolerances to several foods though most of those faded through avoidance over about 5 years. For about 3-4 years I was still stuck with intolerance to milk, and I would re-test for that every so often. I didn’t need to test for the wheat as small accidents in the diet would be enough to know I was still allergic. Both the milk intolerance and the wheat allergy seemed to go about the same time, when I was on 9 mg of LDN, when I noticed I was also getting much less abdominal pain generally.
I do still have some problems with skin allergies especially to latex, and I have a very dry easily inflamed skin though that’s life long.
Hi Monica,
I’ve got CFS and am taking LDN since last February and am on 4.5 mg (I dilute a 50mg pill, cheapest med I’ve ever been on, apart from paracetamol).
I’ve improved immensely; I’m back at work for 80% and am able to do chores and hobbies again, after having been bed bound for about 8 months.
Could you please tell me some more about your allergies? Where they nutritional or also mold and other environmental toxins? It seems that I sometimes relapse because of something unknown in my environment. I eat very clean and healthy, organic, just vegetables and rice, and fish and meat, no gluten or dairy.
Thanks in advance.
I was made to go cold turkey off of LDN at 4.5mgs… bad news as my heart went out of control… I had to or they would not do the heart ablation surgery. The withdrawals were subdued by 2.5 weeks… I then waited 10 months to reload as i relapsed. The drug worked the 2nd time around also…
If you’re not sensitive to the (tiny amounts of) fillers, the cheapest way to get LDN is to use generic 50mg tablets. Naltrexone is water soluble. Pop a tablet into 50ml of distilled water and let it dissolve. Store in the fridge for up to 2 months and shake before measuring. There is 1 mg of naltrexone in each 1ml of liquid.
I’m testing a home-made generic mix against liquid compounded by Skip’s pharmacy, just to see if I respond differently. I’m not seeing any difference.
I use liquid because my dose is still under 1mg naltrexone. Skip’s cost $37 including postage for 135ml. Home made cost $5 (copay) for 50ml.
Hi Cort,
Thanks for the info BRS biotechnologies. I will call and talk with them.
Madeleine,
Does that mean a 50 mg. has fillers & if so what are they?? Thanks for the info.
Skip joined TNI BioTech, Inc., as Quality Control Officer in 2012. TNI BioTech is now Immune Therapeutics. I don’t know if Skip is still with them or not.
http://www.marketwired.com/press-release/dr-henry-skip-lenz-pharmd-joins-tni-biotech-inc-as-quality-control-officer-pinksheets-tnib-1712202.htm
I don’t know if I’m too happy about this company taking hold of LDN. As I told in a previous comment I use dissolved 50mg pills, 20 pills cost me about 18 euro’s. I don’t see why a 4.5mg pill has to cost 1 dollar. It looks like the pharmaceutical industry is (again) seeing a way to make profit of something that in itself is a cheap product, over the head of patients.
I’m glad my GP prescribed Revia, so I can dilute it, and not forced me to take the pre-made LDN, which I can’t afford.
I am grateful for Cort bringing up LDN. It’s sad that I’ve been seeing specialists (this time around) for FMS/CFS/Lyme whatever for 8 years now and no one brought it up! Last week the shipment was 5 days late and I thought I was going to die, so much pain. I’ve been able to get off Ultram and Lortab and gotten Cymbalta down to 20mg from 60. My head is clearer than in years. A couple downsides are A) my sleep now is too light because I’m no longer so heavily medicated. Xanax and Elavil + herbs etc just don’t cut it any more. And as much as LEN helps my depression I’m still needing something for anxiety, etc. It’s been frustrating to find sleep & psych meds that aren’t so doping but still doing the trick. But I guess that’s part and parcel with this DD.