posted
I've been treating Lyme and coinfections with antibiotics and herbals for 3 years. All this time I've been constantly on multiple prescription and herbal antifungals (nystatin, diflucan, garlic, caprylic acid, olive leaf extract, oregano oil, iodoral, etc), and until I started LDN, I had no visible or perceived signs of yeast.
After starting LDN six weeks ago, yeast has exploded, although I've continued taking handfuls of various antifungals. I've also tried reducing carbs, but I'm not sure what the heck to eat since my LLMD believes that I should be on a low-fat vegan biofilm-busting diet (full of carbs!)...arghh!! And I don't eat gluten or dairy.
This really makes me wonder, what is LDN exactly doing to our immune systems? I've read again and again that LDN "aggravates" yeast, but in my case it seems to have caused it. Does that mean that LDN is suppressing my immune system, as a couple of LDN doctors have suggested? Or is this yeast flare "transient" (it's been six weeks!), as the LDN proponents claim?
Any help appreciated!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
UGH!!! Remind me to never try it!!!! Are you sure the new (crappy) diet didn't cause it?? (or did you not begin it yet?)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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James1979
Unregistered
posted
Wow, I'm so happy to have read this. I've been contemplating LDN as an "alternative" therapy. It seems that most of the stuff written about it is good: "It's miraculous!", "It boosts the immune system!", "It makes me feel great!".
I also would greatly appreciate if anyone else has further info about the connection between LDN and yeast flares.
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Wow - did not know this either - I would hope it doesn't create yeast problems since I know so many here must be on it.
I haven't gone on it yet - was actually going to ask my LLMD about this at my next appt - maybe will have to err with caution?!
There has got to be other immune boosting remedies out there too.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I've been on it for 18 months with NO ISSUES.
I wouldn't blame LDN.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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Lymeorsomething
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Member # 16359
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Yea, you can't just assume it's the LDN yet.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Yeah, I don't like to assume or blame any particular med/supplement, either, but it's difficult for me not to make the connection between starting LDN and having visible signs of yeast that I've *never* had before, in all my years of treatment.
The LDN yahoo group includes warnings from a prominent LDN doctor that LDN "exacerbates" yeast. But that verb is vague...and I'm wondering about causality, as so many others on the yahoo site also see a flare in yeast after beginning LDN or upon increasing the dosage (mine got even worse when I increased from 1.5mg to 3mg).
There's also a good bit of debate about the actual mechanisms behind LDN and its effects on the immune system. Whereas some docs state that it's "immuno-enhancing," others say "immuno-modulating," and yet others argue that it's "immuno-suppressive." I don't want to be on something long-term that is actually suppressing parts of my immune system.
I really like the energizing effect of LDN - it's great stuff! The only impediment for me seems to be this "aggravation" of yeast. I wonder if others have found that their yeast problems go away after longer-term usage?
PS - when I ask these questions on the yahoo group, I just keep getting the same quote from the doctor who says that "LDN aggravates yeast," with no further explanation of LDN's theorized mechanisms...
Again, thanks!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
A vegan diet helped me when I wasn't on anything (when I was undiagnosed).
Carbs (starches) and sugars feed yeast. Lyme loves inflamation. I was a vegan up until I started abx (couldn't because abx gave me major yeast problems, so I had to ditch the vegan diet).
We are all different. There are just too many variables with us all. Some people have heavy metals in their bodies, hence, more yeast.
I think it's the carbs.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have never heard an LDN researcher refer to LDN as an immune suppressant. It is still stuck in the minds of most doctors that auto immune diseases are the result of an over active immune system that needs to be suppressed.
So when LDN is prescribed and it works, they assume it is suppressing the immune system. It doesn't. Current research is taking a new position that auto immune disease is the result of a weakened immune system that needs to be regulated, not suppressed.
LDN is immune boosting and REGULATING. It increases the T cells that call off the attack of the killer cells responsible for auto immune diseases. It increases endorphins which boosts these regulatory T-cells by up to 300%.
If you want to scientific understanding of how LDN works buy the book; The Promise of Low Dose Naltrexone Therapy: Potential Benefits in Cancer, Autoimmune, Neurological and Infectious Disorders
When you first start LDN it can bring out hidden viruses, like herpes, but then it stops it from re-occuring. I believe if you have yeast, it might flare but it should then get rid it.
My experience with LDN is that it drives out the pathogens. When I started it, my bart flared up and I had to quit it a few days ago and get back on bart meds. I plan to restart it soon. It is very powerful.
I was afraid to start LDN because of the insomnia is can cause when you start it. I was treating bart when it was first suggested to me and already had terrible insomnia so the idea of making it any worse was terrifying.
I am sleeping extremely well now. This is often the case for people who have had insomnia. That might flare too, but then it is gone.
So don't be afraid to try LDN.
Being on a vegan diet does not mean a high carb diet. You should be eating low to medium glycemic index foods like quinoa, beans, nuts, seeds, vegetables etc. The highest GI safe for you would be brown rice - no potatoes, very little wheat (if you can tolerate it and only whole wheat). Instead use almond, oat or brown rice flour. Be careful of fruit. Berries are best.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Great post. I am considering asking my LLMD for some LDN on my next visit. I have made numerous changes but I think my immune system needs up regulated.
I just had candida flare this week, first time and I am sure my new juice diet is causing it. I have stepped up the antifungals.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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I have read that book, as well as everything I can get my hands on about LDN. There is one particular, very prominent LDN doctor who has changed his mind about LDN in the last few years and who now strongly believes that LDN is immuno-suppressive. A majority of the others, including the (now deceased) Dr. Bihari and Dr. McCandless, describe it as "immuno-modulating." So, there is not yet agreement about mechanism of action.
I have always been on a pretty balanced diet in terms of carbs/protein/good fats during my three years of treatment. Gluten and dairy free for past year. Haven't changed the ratios very much, except that I added more vegetables, decreased fats and did away with meat for protein for a few months March - June of this year. I eat the things Neff suggests.
Again, I emphasize that yeast had never been a problem for me until this past month - September - beginning the week after I started taking LDN.
I am hoping, as you theorize, Neff, that the increase in yeast is a "flare" as the immune system "activates." I'd love to hear from folks who've had long term experience with LDN and might be able to relay any information about the effects of LDN on their immune systems. Anyone who has had any immune system labs before and after?
Thanks for indulging me!!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
what are your yeast symptoms?
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I think this quote from the yahoo site might help:
Q: Dr. JM or anyone- Does LDN cause candida? A: LDN has been noted to aggravate yeast infections and other latent pathogens, viruses, etc. as the immune system is making early adjustments. It is good to have natural yeast remedies on board when LDN is started (grapefruit seed extract, Candex, lauricidin, hi-potency probiotics, etc) to help offset this possibility. (And of course a good dietary regime that does not encourage gut inflammation which is usually the predecessor to pathogen invasion).
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Too funny, Neff - that's the quote that the folks on the LDN yahoo site keep sending me over and over and over....but it doesn't explain much!?
Why would that happen? If LDN is actually "boosting" one's immune system, why would the immune system suddenly allow yeast to proliferate?
I would welcome a more sophisticated explanation of how LDN "aggravates" yeast.
My yeast symptoms are a white tongue, gurgly belly, loose stools - again, symptoms that I never had until a week after beginning LDN, despite the multitudes of anti-yeast remedies I'm on...
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
Healing in Santa Cruz - regarding your question on LDN - your mail box is full!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Dr. Bihara first used used LDN for HIV & Aids patient so I doubt very much he felt it is a immune-supressant.
I am a former patient of that great doctor. I did LDN for 2 yrs. at the 4.5 mg dose and it did bring out excerbate Lyme symptoms. Swollen knee, pain in legs, visual disturbences, headaches, noise sensitivity etc.
Dr. B thought something else going on (not MS) and was thrilled I found a LLMD.
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
I began LDN the first week of June and proceeded as recommended to the 4.5 dose. I have had no signs of yeast increases or development.
I had another interesting development.....a very very very long term itchy rash of 'unknown' origin (of significant size on the outside of lower leg) flared to massive itching.....this settled down after being on the full dose a short time. It has been practically inactive ever since. For that I am grateful!!
I definitely have more energy, endurance and bright thoughts.
may I add that my blood counts have come up 'mysteriously' after several years of lows during this short time of taking LDN. Is it connected? I don't know but the lows went on for several years a suddenly, normals!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
Thanks for relaying your experiences, dmc and lightfoot. lightfoot, yours is particularly heartening!!
I've periodically taken Beta Glucan but never noticed any increases in immune function via labs....who knows?
Yeah, I don't think Dr. Bihari has considered LDN to be immunosuppressive. Rather, it is Penn State's Ian Zagon who is the LDN researcher/advocate who has changed his mind and now believes LDN to be an immune suppressant.
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
interesting information here thanks for the discussion.
are primary care doctors treating with this at all, or must you go to an LDN specialist?
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Mo, We've had luck with our GP prescribing it.....my sis is counting on a Functional Medicine Doctor to rx for her.
Her Kaiser doc is also interested to prescribe it for her Crohon's but seems to consider a short trial to be adequate....doesn't seem like enough for sure.
There is enough information and studies to approach doctors other than a specialists.
The biggest hurdle IMO is they have never heard of it so when we appear it's all new to them...We have to be prepared to bring him/her a clear message.
Possibly preparing something short and to the point as a document to present when requesting this treatment.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am surprised that Dr. Zagon says it is immune suppressant. That does not make sense to me.
I contacted Dr. Zagon because my son has type one diabetes and he responded immediately. Why don't you ask him your question and then report back with his answer? There is also a site that answers questions.
Maybe your dose is too high or not time released. When naltrexone is given topically in high doses it stimulates growth. Dr. Zagon has done research using it in the eyes of diabetic rats to heal corneal damage. It can also help heal wounds.
Researching type one diabetes, the most promising new research focuses on immune stimulants. One is the TB vaccine, BCG, that boosts the Tumor Necrosis Factor which is part of the immune system. In the past they used drugs for autoimmune diseases that suppressed the TNF.
Another is TREG therapy which is cloning the regulatory T-Cells that call off the attack of killer t-cells. They are collected from the patients blood, grown in the lab and injected back into the patient with 1500% more.
Both of these therapies work 100%, so far with no serious side effects. LDN is similar to TREG. It boosts the regulatory cells up to 300%. LDN causes the immune system to attack cancer cells with opiate receptors so it seem it boosts the tumor necrosis factor.
One way of looking at it - LDN suppresses the part of the immune system that is out of control causing inflammation but it does this by stimulating the production of regulatory t-cells.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Yes, very interesting to have read, on several different boards, Dr. Zagon's response to folks who have asked him about the underlying mechanisms behind LDN. From what I can gather, he hasn't always viewed the drug in this way, as immunosuppressive.
I am on 3mg LDN - quick release - taken at bedtime. As I'm sure you know, that is considered by many to be a normal or even low-normal dose. Much that is written about the benefits of LDN is from folks who take 4.5mg/night.
Wow, TREG sounds interesting. So does all the info that has recently been posted on GcMAF!
How is LDN working for you? Besides the increase in yeast, I like the effects - have been able to extend my runs significantly and can get a lot more writing done in a day!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I hope you can continue to take it. Here is a good link I found that explains how it works for anyone else that might want to know:
I feel great on it except under my eyes is swelling a little bit. I read this is a very rare side effect - just my luck! I am only taking 1.5 mg.
I will lower the dose to 0.5 to try to desensitize myself. I love the endorphins - feel so HAPPY for a change. I am much more social on it - just happy to see the world. I also sleep extremely well. I fall asleep like a normal person.
I have been taking the LDN in the morning though because I am so paranoid of insomnia. Dr. Zagon said it does not matter - I know that is controversial.
Lyme and co's are not very noticeable right now. I restarted Bactrim and while on it I have no symptoms or they are so minor I do not notice them.
My son just started LDN to try to halt his beta cell destruction. What a relief. It was so hard to convince him it is not a kooky fad or something potentially dangerous. He sure makes me do my research!
I also ordered the PE-1 which I hope will arrive soon. I hope to get off the drugs soon.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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i'm glad this continues to help you! do you need to go off LDN for photon therapy?
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