MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I am mostly symptom-free with two-week-long relapses every three months (which is pretty good but still hard to deal with, though I'll take that pattern over 'sick all the time' any day). I got symptom-free after 6 months of oral antibiotics and an additional year and a half of Buhner herbs alone.
I currently take Buhner herbs and have played with antibiotics during some of my relapses and have found that the oral antibiotics didn't make a huge difference in my case (long story, but basically some of my relapses are often explained by mercury toxicity issues or candida flare-ups, rather than Lyme alone. Also, I recover from the relapses within the same amount of time whether I take doxycycline or not, so I don't think it's what makes me recover, and my doctor and I have wondered if the 'relapse' symptoms are Lyme or just candida).
However, I do have a lot of immune disregulation symptoms. The main one is having candida despite being on diflucan and nystatin and a low-carb diet. This spring I have also had a LOT of colds and flu. I have mercury toxicity and have been slowly chelating it. Occasionally a chelation session sets off Lyme symptoms, but sometimes it makes me feel better and more clear-headed.
After I got one recent bad relapse after chelation, my doctor suggested I try low dose naltrexone. (see www.lowdosenaltrexone.org for more info)
In high doses, naltrexone is used to help heroin addicts cope with going 'cold turkey' to quit heroin. In tiny doses, it's used experimentally to improve immune function. Apparently some MS patients are helped by it, as are others with autoimmune issues or other illnesses that affect the immune system.
you have to get the LDN from a compounding pharmacy as its normally sold in the high dosage. My doctor calls in a prescription to McGuff's Compounding Pharmacy and they mail it to me. It's really cheap and has few side effects for most people other than some initial sleep disruption (which was not fun!!! it lasted two or three weeks where I didn't sleep enough and turned into a real jerk as a result. However, the sleep disruption goes away for everyone after the initial period.)
Anyway, in early May, I was having a really bad Lyme relapse after a chelation session went badly. I'd started getting symptoms I hadn't seen in years. Right about that time, I also found an attached-for-days tick. After the tick bite, I got sicker and had heavily enlarged lymph nodes, which for me is a sure sign of Lyme issues (rather than candida symptoms, which are similar). I also had some kind of local skin infection at the site of the tick bite- not exactly an EM rash (I never had one the first time either) but not like other tick bites I've had this spring.
So, either my tick carried Lyme, or carried some other bacterium that really threw my body for a loop with my pre-existing Lyme.
I put myself on doxycycline and herbs again, and shortly after that, got to start taking the naltrexone. Within two-three days of the naltrexone, I had my life back to normal and my tiredness/pain/brainfog symptoms went away. I'm now back to symptom-free and am much more functional than previous months of symptom-free times.
It's hard to know what to make of my story, as I was on doxycycline at the same time (and am now on a lot of herbal medicines as well), but I don't usually have such a quick response to antibiotics when fighting a relapse and haven't been this stable/healthy during my 'symptom-free' periods before- I'd say I'm at about 99% 'normal' and am able to multitask, use my brain like a normal person, and have nearly completely normal energy levels- rather than what I usually call 'symptom-free' which still leaves me a tiny bit of cognitive stupidity.
I'm pretty sure that the LDN has a lot to do with this vast improvement, and that I'm doing it even in the face of a current re-infection with something from a tick.
At the moment, too, if I stop antibiotics, I start getting neck pain and some other minor Lyme symptoms including lymph node swelling, so I'm pretty sure that I still am fighting an active infection. However, based on my past experiences with the same antibiotics and herbs, I'm sure that the LDN is really helping make this go so well, as in past experiences with relapse or during my original infection, I didn't respond this completely to antibiotics that quickly. I suspect that both drugs are working on different pieces of the puzzle.
posted
Interesting... I would like to know why it works.
Posts: 641 | From Wroclaw, Poland | Registered: Mar 2004
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
My LLMD has recommended this to me more than once and I sort of just blew it off.
I have a lot of pain...does it help pain quite a bit?
Maybe I should give a try..any side effects?
Also, how low of a dose do you take? Is it in pill form? I am thinking..if you got the lowest dose at a regular pharmacy if it could be cut down to the low dose needed?
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I researched this remedy a while ago.
I asked my doctor about & he said that some people do well on it & others don't really respond. He would have given me a prescription for it but I decided not to try it.
I have very bad pain & I have to take oxycontin or vicodin almost every day. You can't take any pain meds if you decide to use LDN.
As MariaA said - it's used for people who are addicts & has some kind of reaction with pain meds. I forgot exactly what it was since I studied this a while ago.
MariaA - if you feel you still have Lyme in your system, you may want to try Grapefruit Seed Extract. There was a study done & it seems to be a cyst buster.
There's a formula I took called Yeast Cleanse by Solaray with Grapefruit Seed Extract, freeze dried garlic & other herbs. It cleared up my yeast issues & I think it made me herx quite a bit due to cyst busting.
I plan on taking it again every once in a while to stir things up. I don't think Buhner recommends it because he feels it doesn't cross the blood/brain barrier & the cysts can be located there (I think I read this somewhere).
I don't see that it can hurt, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Sparkle, Well that was my next question. I too have unbearable pain and have no choice but to use pain medicines. I just watched the video at the link...it seems that in higher doses 50mg + it does "interfere" with allowing the pain meds to work it sounds like. But the dose it looks like we would use would be 3-5mg, I wonder if that would have much effect on those of us who must use pain meds. That is a good question for my LLMD.
posted
Lots of info on LDN at LDNinfo.org. My daughter is starting it tomorrow at 4.5mg. It is talked about gretaly in The Lyme Disease Solution book by Dr Singleton that just came out. Her compounding pharma suggested I look into it. She is weaned finally off narcotics (morphine, Vicoprofen and Lidoderm patches-- needless to say it has been hell -- but she is ready to give it a try.
She has been taking Tramadol as Skip Lenz, the compunding pharma on the web site above indicated it was safe to use.
Anyone else tried it lately?
Posts: 93 | From Midwest | Registered: Apr 2008
| IP: Logged |
posted
I take LDN , ive been diagnosed with M.S,/Lyme. I take 3mg a night. It is a opiate blocker, it doesent help adics detox but stops the plesure effects from herion and also alcohol.And most pain medicine works with LDN since you are taking such a small dose but I think its advised to avoid the opium direvited ones. I leaned how to make my own liquid form of LDN. I order 50mg pill from a online out of the country phamacy and disolve it in 50mg of distiled water and then take the desired amount in a marked baby medicine dropper. Terri
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
was on it for two years prior to lyme DX for my supposed MS. Even had the founding Dr,. as my MD.
I got worse on it. I believe it helped my body recognize the lyme & co infections and start fight them.
I got joint pain, swelling, heart palpatations, more neuromuscular stuff. etc.
BTW, the founding dr., dr B of NYC was thrilled I had found out the cause of my MS.
I can't take it while doing abxs...feel like I'm gonna die an hour after I take it.
I do try it periodically to see and find still can't.
Great for those it's working for,,,wish it helped me, there is still hope.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Well, a few weeks after I wrote that post I came down with the relapse from hell, which hasn't responded to anything all summer . I had gotten bitten in the late spring and several other times after that, and I'm pretty sure from what happened that I just got reinfected, and/or infected with babesia, because I got pretty sick right after the first tick bite and felt a few other things that were just like the first time I got Lyme. Later in July I actually could feel myself getting sicker and 'jittery' like I was being reinfected with something, searched and searched, and finally found the tick I was looking for.
I had not previously had babesia symptoms and my illness this summer doesn't seem to respond to any of the usual antibiotics that I think should have worked.
Anyway, LDN doesn't seem to make a difference for that, but I have had one interesting long-term response from it- I no longer seem to have any candida problems. If that's true, it's a massive change from the last, oh, 12 years or so. I've been on a lot of antibiotics this summer so I'm very surprised to not have any major issues with yeast infections or other symptoms of candida.
All I'm doing for candida is some very occasional herbal stuff when I remember to do so, and a very occasional diflucan (I do have cyclical yeast infections once a month but they're BARELY noticable now, which has never been the case in the past).
Candida has been the insanely difficult health fight of most of my adult life so I'm very surprised by this all.
There are lots of unknown possibilities for why that's changed, including changes as a result of new illness ( but why?), but only two most likely things I can think of are:
-taking LDN a lot this summer
-getting out of a relationship where MAYBE we were passing it back and forth if yeast infections could be sexually transmitted. I'm not completely sure that's possible and I've certainly had a massive battle with yeast infections before being in that relationship, including when being single for long periods, so I'm still guessing that LDN and changes in my immune system has had a lot to do with it all.
By the way, I didn't notice that LDN changed anything major about how pain meds worked for me. I of course can't tell whether the other way around is possible (ie whether pain meds affect LDN). I think I've had opiate pain killers (will have to check- is percoset an opiate?) due to a couple of really serious injuries between the time I started LDN and the time I got too sick to play sports this summer, so I'm pretty sure that the LDN didn't impact the meds effect.
-------------------- Symptom Free!!! Thank you all!!!!
posted
My daughter has now been on LDN for about 6 weeks. She started at the 4.5 mg per night. Her sleep is much improved, and I think she has made it longer into the fall without a lot of pain than she typically does. That Fall Meltdown usually starts around Ocotber and it hasn't happened until just this week.
She does not sleep during the day like she used to, but again, she is not on any narcotics since she had to go off them before starting LDN, and we took her off of Prozac at the same time. She is almost 16, and wanting to drive, and we nor she were comfortable with a teen driving who was on Morphine! She doesn't complain nearly as much about pain since the LDN, so I think that's a positive with it. She does take Tramodol as needed, but it's not very often. That is one drug she can take for pain with LDN.
The other thing we started about the same time was HRT. She is taking compounded T3, estrodiol, DHEA, progesterone and most ercently cortisole. After dealing with this for 5 years, her hormones were way out of balance. I have since read that they need to be in fairly good shape with the LDN as well.
We plan to continue it. It's cheap and safe! She also takes 3mg Lunesta and 1mg Klonopin at night, and believe me this is the best sleep combo we have found in five years. We are still working on getting her WBC up. That seems to be an ongoing issue. It went up right away when she started LDN, but now it's down again below 3.5. She has started Shark Liver Oil so maybe that will help.
Sorry to be so wordy! Hope this helps. There is a good web site and message board on LDN.
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I haven't been really consistent with the LDN in the last few months, but I do think it's helping me control candida. I am absolutely amazed at the fact that my decades-long candida problem just vanished this summer even though I was on antibiotics for months and months. I really attribute that to LDN. I would love to know whether anyone else with candida issues has this experience, as of course it's possible that something else changed in my immune system or otherwise affected the candida imbalance.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Going on the Yeast Connection protocol 2 years cleared up mu D chronic sinusitis. She still takes 2-3 Diflucan a week, but hasn't had sinus issues at all, and they were bad! We just got back from her PCP and her WBC is at 7.1 again. I think that is a direct result of the LDN on her immune system.
Posts: 93 | From Midwest | Registered: Apr 2008
| IP: Logged |
posted
I usually don't suggest people read wikipedia articles, but the one on LDN is pretty good. They've used it to treat MS and many other things that are caused by lyme disease and seen improvements with it. The article explains how it can help regulate the immune system among other things. So helping with pain is just one thing it does.
Posts: 499 | From Indiana | Registered: Oct 2007
| IP: Logged |
posted
They are doing studies for LDN with Pediatric FM at Stanford and I have been in contact with them. Dr. Singleton talks about using it for Lyme in his book The Lyme Disease Solution. We did our research before asking her PCP about it. He since has suggested it to other patients.
The wikepedia article is good. You might also look at the other one I listed above.
Posts: 93 | From Midwest | Registered: Apr 2008
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
quote:Originally posted by dmc: was on it for two years prior to lyme DX for my supposed MS. Even had the founding Dr,. as my MD.
I got worse on it. I believe it helped my body recognize the lyme & co infections and start fight them.
I got joint pain, swelling, heart palpatations, more neuromuscular stuff. etc.
BTW, the founding dr., dr B of NYC was thrilled I had found out the cause of my MS.
I can't take it while doing abxs...feel like I'm gonna die an hour after I take it.
I do try it periodically to see and find still can't.
Great for those it's working for,,,wish it helped me, there is still hope.
This is exactly what happened to me, I never would have known I had Lyme if I had not tried LDN. It provoked all kinds of Lyme symptoms to begin, and then my western blot revealed active IgM infection. The symptoms were so severe I could not possibly continue using it. However, I would like to eventually take it again to help maintain a "remission" that I achieve with antibiotics.
In my opinion, the ability to tolerate LDN is a good test of the relative severity of your infection. LDN seems to "turn the lights on" for your immune system and reveal everything that was previously invisible. If there's nothing there, you're fine. If your body is riddled with spirochetes, you're in for a BUMPY ride.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
| IP: Logged |
posted
I tried it for a few weeks and it made me much, much worse. If I had to guess why, I would say that it probably worked as advertised, and so it actually upregulated my immune system and that gave me all sorts of new symptoms or newly intensified symptoms.
I wish I had never messed with it, though I'm sure it's just another example of having to feel worse before feeling better. Ouch. Posts: 194 | Registered: Jul 2005
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Can anyone tell me what the theory is on LDN and melatonin- I'm guessing that it's potentially a bad idea to mix them, but is there any info on what may happen if one uses both?
-------------------- Symptom Free!!! Thank you all!!!!
posted
I have been on 50mg naltrexone to help discourage a negative behavior. It works for that. I've been on it for probably 9 years. I have no side effects from it. I carry a medicalert/see wallet card tag all the time because of the opiate blocking effects of it. If I was unconscious and they gave me pain med's, they wouldn't do a thing. It takes a few days for it to totally clear the body. It is cheap. Oh yes, if you drink alcohol, nothing bad happens,...nothing good either, you don't get the high from alcohol on it. Good for chronic alcoholic relapsers.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
| IP: Logged |
posted
I don't know of anything saying you can't use LDN with Melatonin. My daughter takes 4.5mg of LDN, 3 mg Lunesta, 1mg Klonopin and 2.5mg Melatonin. This has been the ONLY sleep combo that has worked in 5 years. We have done every sleep aid including Xyrem. Nothing gives her the restful sleep that this does. She doesn't sleep during the day at all now, which is a huge improvement in getting her circadium rhythm normalized too.
Go to www.ldninfo.com for more info. Also "Skip" the compounding pharmacist will email you to answer questions. That's what I did regarding Tramodol and LDN.
Posts: 93 | From Midwest | Registered: Apr 2008
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Any update on this?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic