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Treating CFS with LDN

Discussion started by Maff 6 years ago

I have just begun LDN as a treatment for my long-standing (20 years) chronic fatigue syndrome (ME/CFS) and was hoping others who have done the same could offer some guidance or simply share their experiences. I am taking approximately 2-2.5mg before bed - roughly midnight. I say approximately as I have mixed 50mg naltrexone tablets with distilled water. I have only taken two doses so far. Yesterday I noticed improved mood, energy and motivation mid-afternoon. It was a much more productive day than usual. However, I have not noticed any flu-like symptoms that I would expect if my immune system were being modulated and others have reported. Any thoughts appreciated. Thanks.

 

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jamison
jamison
Hi Maff,

Wow, it sounds like you've come an increadibly long way in the last few years!! Looking forward to the book and discussing limbic kindling here on the EIR when you've completed it.

In the meantime, I'm focussing my NAET treatments on the limbic system, still going to do EPD, look in to neurofeedback or LENS and start dosing up on glandulars with limbic tissue in...

I'll let you know how I get on.

Nick
6 years ago
Maff
Maff
The human body does indeed have enourmous potential to heal...as I think we have both experienced ourselves. I have recovered from what was acute MCS and have seen my liver heal itself after suffering toxic hepatitis...and you have seen a lot of healing through PLX, LDN, NAET and other treatments. There is always hope for recovery it can just be a tough journey getting all the pieces in place!

Sorry to hear the LDN started making you feel too groggy in the end. It sounded like you were very pleased with the response at first. I assume you titrated your dose and timing of administration but still had the groggy feeling? At least you found a good insomnia treatment...another treatment tool discovered at the very least. Perhaps in the future you'll be ready for LDN to take you further. I feel a lot of treatments are all about timing and your current state of health.

The eBook I am writing is based on the limbic kindling research. I believe it explains my recovery from MCS and opens up a whole range of treatment options - both psychological and biomedical. The book will lay out my theory and act as a road map for treatments that "should" address both the kindling itself and the resulting symptoms/pathophysiology downstream. All of the information is pretty much freely available here on EiR I'm just putting it into a coherent form and adding my personal experience and knowledge. I plan to create a group based around limbic kindling in EIs and my eBook theory and treatment "program" once it is complete. I'll invite you as soon as it's up and running. Alternatively, feel free to create a group yourself. Any member can create a group! (if there is not a suitable existing category for your group just let me know and I'll add one).
6 years ago
jamison
jamison
Yes it sounds thoroughly frustrating indeed! I think you should write a book about all of this one day!! I am convinced the human body has a tremendous capacity to heel if the right buttons are pressed. It's just a matter of finding the right formula as it were!

About the LDN. With me the viral symptoms subsided after 2 months or so and I started feeling more and more groggy as if I had taken heavy sleeping pills the night before so I've decided to knock LDN on the head for the time being. I do, however, think it was entirely worth me taking and am hopeful that LDN helped me resolve a virus. I still take LDN haphazardly (maybe once or twice a fortnight) as I find it helps me sleep. For instance if I'm up really early in the morning and know I need to sleep (got that tired but wired feeling) I take 1mg and I am in a deep sleep within 10 minutes.

Like you I'm very excited about this limbic kindling theory and think it may hold the key. So we don't hijack the LDN thread it would be really good to have a group set up to talk about possible treatment options etc. I have some ideas and would be interested to hear your thoughts....

6 years ago
Maff
Maff
Hi Jamison,

I have been in a catch-22 with this one for over a decade now my friend...and it is taking a lot to keep my frustration under control! I know intestinal yeast overgrowth is the main driver of my symptoms, it makes sense from the symptoms themselves and it makes sense from a wide range of lab testing. Only problem is I can't do anything about it. As I see it the chronic ethanol/acetaldehyde poisoning over 2 decades has made my brain and CNS too sensitive to tolerate any increased amounts of these toxins when antifungals are ingested. Short of cutting out my ileum It's a very tricky situation indeed!

I am not sure why the LDN gave me this reaction...in some way it must have been antifungal as this is the only mechanism that gives me these distinct symptoms. ABarnett assures me LDN is not antifungal itself so perhaps it was an additive, it only takes a minute amount. I would also have expected any immune reaction to have been more like what you experienced i.e. flu/viral-type symptom flares. I had none of that. As I said in a previous message I think I need to try a pure compounded LDN before I give up on this.

I think it's a toxic injury rather than an immune sensitisation/allergy but I am open to NAET and any other method that may reduce my sensitivity to antifungals. I was thinking of trying a type of biofeedback/neurofeedback called Low Energy Neurofeedback System (LENS) - the only clinic offering it in the UK so far is in York which is only 45 minutes from me.

Just got to the bottom of your post and read that you're considering neurofeedback too! I think it has a lot of potential yes...and the limbic kindling paper is one of the best overall hypotheses for ME/CFS I have ever read. I believe it holds true not just for ME/CFS but also MCS, fibromyalgia and other multi-system illnesses. In fact, I believe it explains how I recovered from acute MCS and have just started writing an ebook based on the limbic kindling hypothesis, how it relates to my recovery from MCS...and the many treatments options it opens up. To me that paper brings together all the most accurate pieces of the puzzle and puts them together brilliantly. I have been thinking along the same lines for a long time but other commitments have meant I have been unable to write on it until now. Watch this space!

Hope you're doing relatively well and NAET is providing continued relief. Also, since this is the LDN group - are you still taking it but just not feeling any side-effects from it now? Do you think it is helping?
6 years ago
jamison
jamison
Hi Maff,

Sorry to hear that you have been having such a strong reaction to the LDN. It sounds like you are in a bit of a catch-22 at the moment: you need to get rid of candida/SIBO but can't tolerate the die off. Very frustrating!!

It does sound, however, that the LDN was effective at switching on various immune anti-yeast pathways. Indeed, I think LDN did this with me too. It switched on anti-viral pathways and after a couple of months I stopped feeling fluey/virally. My guess is that LDN helped my immune system deal with an unresolved virus. Given the chance, maybe it is possible LDN could allow your immune system to kick in and resolve the candida? If this is the case, it would be a matter of dealing with the die off symptoms for a couple of months which sound horrendous indeed.

I just wonder if it is a severe hypersensitivity/allergy to the toxins produced by yeast die-off that is causing you to be intolerant to the LDN and anti- yeast medication. Do you think it would help perhaps getting desensitised against yeast and associated die off toxins either through NAET or neutralisation? I remember at the Burghwood clinic, people who couldn't tolerate die off from candida would get neutralised against it. This way they could take nystatin etc more easily. Apparrently the end points from the neutralisation would often change realitively frequently but the shots would offer protection for a couple of days to a week or more. If you could find a way to tune down your reaction, it could allow you to perhaps tolerate the most gruesome stages of die off and reach the other side? Just a thought...

On another note, thanks a lot for posting that article about limbic kindling in the EIR newsletter. I thought it was fascinating. It would explain so much wouldn't it!? Very rarely have I seen such a comprehensive hypothesis that ticks all the boxes. Most theories on the pathogenesis of CFS are reductionist in my opinion and focus on only one particular aspect of this multi-faceted illness. Anyway I digress...I was so impressed by the theory that I forwarded the article to my NAET practitioner, Caroline. It just so happens she uses neurofeedback as well as NAET and suggested this as a possible treatment option. I remember you saying that you were thinking of trying neurofeedback. Was this by any chance a result of that article? I'd be interested to hear your thoughts on neurofeedback and any good links you have found about the treatment. (I'm still very much in the early stages of forming my understanding of what it is all about)

Anyway I hope you are not too dispirited by these recent setbacks. You'll get there in the end and become a great practitioner one day because of it all....
6 years ago
Maff
Maff
Thanks ABarnett. I can only go from previous experience with my body's reaction to treatments and try to be as scientific in my approach as possible. Of course it could also be the case that there was a filler/additive in the 50mg naltrexone tablets I used that had some antifungal activity. Best to try the stuff from Dickson's I think!
6 years ago
ABarnett
ABarnett
Maff, that sounds like a good strategy. We are all guessing and that is far from ideal, but until we get this therapy into mainstream we are all left to out own instincts.
6 years ago
Maff
Maff
I will consider obtaining reliable LDN from Dickson's and giving that a go to confirm my response but if it turns out to be the same then it won't be possible for me to pursue LDN as a treatment at this time. Thanks for the information and support.
6 years ago
Maff
Maff
Yes, I agree it is far from ideal to mix your own LDN as there are large margins for error. However, it does not explain my reaction. This is a reaction I am acutely familiar with and has only ever happened when taking antifungals. That the LDN caused this same reaction when nothing else has is puzzling. I was taking nothing else at the time.
6 years ago
ABarnett
ABarnett
Maff, LDN is not antifungal and does not stiumulate the immune system, unless you take high dose Naltrexone. Mixing your own LDN is not as simple as crushing tablets and mixing in water, you won't be certain of an even mix that way, and if the tablets are slow acting Naltrexone then you will get an immune stimulating response, which you don't want. Dickson does test his mixtiures to ensure a good mix and he uses Naltrexone powder from BMS to make it, and he is a chemist so you can rely on a good quality product.
Hope that explains things.
6 years ago
Maff
Maff
Hi all,

Thank you for the positive comments re: me starting therapy with LDN. Unfortunately it has been very short-lived and I have already had to come off it. Not due to a known side-effect of the treatment itself but an idiopathic reaction that I have experienced over the past decade when I have taken antifungal agents of any type to tackle my small intestinal Candida/yeast overgrowth. The reaction is unique and affects my brain and CNS - hyperstimulation of the SNS seems to be a key element. Anyway, long story short, these symptoms are unbearable even with the aid of large doses of benzodiazepine tranquilizers to turn down the 'gain/volume' on my brain and CNS. I have found nothing that blocks the effect other than DHEA supplements (act to facilitate GABAergic activity - seemingly better than benzodiazepines) but my liver is unable to cope with taking a steroid.

This experience has me intrigued (if hugely disappointed!). Thinking through this logically, either LDN has antifungal activity, either directly or by rapidly stimulating immune activity against yeast/fungus, or its effects overstimulate my brain and CNS in the same way as the yeast/fungal toxins produced during antifungal die-off. Given no substance that doesn't have antifungal activity has produced this reaction before I am inclined to go with my first assumption...particularly as I have tried a whole lot of prescription medications, nutritional supplements and herbs over the years!

So, I am back to square one. I believe LDN would be helpful but am unable to tolerate it. A situation I am painfully familiar with.

On the subject of mixing up my own LDN. I only did it that way as I was kindly given a few 50mg tablets of naltrexone at no cost and just wanted to see how I reacted. As it turns out this was a good choice as it saved me wasting my money obtaining a prescription compounded form. If things had gone differently I would have obtained compounded LDN from Dickson's chemist in Glasgow as ABarnett mentioned. Having said that, mixing your own is a very simple procedure for anyone with a basic grasp of mathematics and for those who cannot obtain a prescription like WindingDown I think it is worth considering. Great to hear you have been doing so well on it WindingDown!
6 years ago
Viewpoint
Viewpoint
ABarnett - in the USA they don't have online prescribing Drs like those in the UK do and as so many in the USA are forced to take this route (and with good results) it is better than nothing. There is a lot to be said for having LDN prescribed for you and then have a Dr monitor you (if you're lucky enough). It's everyone's dream for LDN to become available as mainstream medicine. Unfortunately there's not many of us that do have that luxury on a global level.
However I understand where you're coming from and you expressing your concern about people getting Naltrexone overseas and then compounding it having had the likes of several well known Drs and pharmacists in the USA and UK express their concerns and questions about the quality of LDN when people purchase it this way. If any of us ever do win the lottery, perhaps open up a string of online Drs worldwide to help with those obtain LDN would be the way to go.
6 years ago
ABarnett
ABarnett
Windingdown, I guess, since you talk dollars, you aree not lucky enough to live in the UK.
I too am FORCED to pay for my LDN because doctors refuse to prescribe for me, but at least I can get it, in spite of it being unnaffordable and driving me into debt too.
Oh well, better to live in debt than die solvent eh?
Do try and get a script though, use this contact for worldwide lists of prescribing doctors - [email protected] - and don't just assume people who try to help you don't know what they are talking about, I actually both know and suffer the same problems as you do. I was lucky enough to live close to Dr Lawrence, but if he retires, I do know how I will get it, I will use one of the online prescribing doctors which is what I recommend you to do.
I have lived in debt all my life, so maybe it's easier for me to live with than for you, but it remains true, that if you can get a better source of LDN than you are currently using, just do it and please don't just attack me for suggesting it.
6 years ago
WindingDown
WindingDown
ABarnett, while I thank you for looking out for others like me who were FORECED to mix up their own LDN due to ignorance of Doctors around them of LDN and being disabled and limited income most of us have more income going out then coming in and unable to go to any amount of doctors to find one that will give you a script for LDN is not as easy as you think for some of us just to snap our fingers and LDN script will appear, nor do we have the hundreds of dollars to call an LDN Dr on the phone or online. ABarnett I say with the utmost respect, please don’t take it any other way, UNTIL you walk a mile in our shoes, you should not judge us home compounders. How you would you like it if you were not given the change to try LDN? I’m sure you would be in a worse place, as some of us are be for being fortunate to try LDN on our own. We don’t take LDN lightly we are DESPERATE FOR HELP… so please trust me we would rather have had some nice Dr trust us and give us a script but after 6 months of trying to get it from my Dr and a total of 13 months on the internet before compounding it myself I was on blogs, forums, chats, LDN sites, and LDN all related books I could find. I knew LDN was for me, and I COULDNT GET IT!!! So, yeah we buy our own tablets and yeah we mix it up at home, yeah we re make a new batch every 3-4 weeks yeah we keep it cold to cut down on any germs that can form from an improper sterile dropper or bottle, and so far from the 13 months of research not one person has ever died from mixing up their own at home, its LOW DOSE NOT REGULAR Rx… Drug addicts and Alcoholics take up to 150 mg a day, even if some one mixing their own at home added too much or not enough water, they will not be in harms way. Please get off your White Horse and support us not criticize us. Thank you so much for listening ABarnett.
6 years ago
WindingDown
WindingDown
Maff, so great!!!! I too noticed an improvment in my mood and energy level first day myself.. This is good news, you are responding!! I have suffered with symptoms since mid 80s, yet, I didnt know they were symptoms of FIBRO/CFS. LDN as treated my IBS as well! I did have some tummy issues first few weeks but all made way to clear sailing..
6 years ago
ABarnett
ABarnett
I don't know where you are living but I must recommend that you get a mixture made up by a pharmacist because making your own preparation is not ideal. I use the liquid preparation from Dicksons chemist in Glasgow, buit the usual difficulkty comes from the need to get the prescription too. The LDNNow website can direcct you to prescribing doctors and suppliers though so I recommend you do try and get a better formulation to use.
However, using LDN will improve energy levels from the effcts of boosted endorphins. I don't know how much CFS/ME has an autoimmune component, but chronic sickness does involve long term damage to the immune system and LDN should help with that. Good luck.
6 years ago
Viewpoint
Viewpoint
Well done on starting your journey to better health with LDN. Not everybody experiences flu like symptoms nor do they have any of the "side effects" you may have read about when starting out. I'm pleased to hear of your positive results so far - long may they continue.

I look forward to your updates!
6 years ago

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