Has LDN worked well & so quickly for anyone else????

[dotsdaughter2]

Thank you, have a great weekend

[Krys]

@cavalier wrote:

Krys – I didn’t realize that lyme could cause the circulation & the feet to go black – interesting!

I’m not sure, but bacteria / microbes certainly have a huge impact on circulation and the state of our veins! I blame everything on Lyme, it makes things simpler for me! 😆 I’ve had some circulation problems all my life, but I did have 2 bullseye rashes as a kid and since then usually had swollen ankles, cold hands and feet, very low blood pressure, constant throat problems, fragile mucous membranes all throughout the body, chronic bronchitis, fragile nervous system easily overloaded with any stress, etc. Genetic susceptability must be playing a major role, too. Almost everybody in my family has heart problems or heart problems and cancer. I keep stalling getting at Babesia and Bartonella, I believe that once I do, things will vastly improve!
TCM (acupuncture, herbs, moxibustion, blood letting: it’s only a couple drops at a point by big toe, very painful but does help!!!) has helped a lot, but not completely. Systemic enzymes do help additionally. Detox foot soaks help, too. But nothing so far has helped completely and lastingly.
The thing that was helping me most overall is an easy massage alongside the spine. viewtopic.php?f=1&t=4833&p=47055&hilit=#p47055
One cannot do it on one’s own and my husband while happy to do daily Reiki treatment for me, does not want to do this massage. The few times he did, the effects were quite amazing!!!
Jan posted once about hand held infrared wand that one can get on Amazon. My TCM doc thinks I should not do the sauna (heat is great as long as I do not sweat due to diminished life force. Sweat is considered in TCM to be replete in life force, just as blood is). So I mentioned this hand held device and he was most enthusiastic saying that I could use it on acupressure points and along the spine. I wonder if it could work somewhat similar to spine massage and be as beneficial. If yes, and if it could be used on feet, it could help with circulation in feet? I just need to buy it, take it with me to my session and have the treatment demonstrated. So far it sounds promising.

AP is def. a help but in my case I was so far behind the 8 ball already & the disease was really marching onward that i dont have years to get on top of this …So addressing this in immune modulation … I have added to gain more help and my feet and hands have been my guide.

Jill, we do what we have to based on our problems and resources. Don’t ever feel even a little bad about any choices you make to help yourself! You are doing so much!!! You inspire us with your great perseverance at finding what will work best for you. Look how much you have achieved just lately!!! Yeepee!!!

I am using sea salt un-iodinized with organic lemon juice ….or you can use Vit C with the sea salt but since i already take Vit C am using the lemon.

I’ve heard enthusiastic reports of Lyme patients who could not for various reasons continue abx, and chose sea salt + C often combined with rife machine.

I have lost my watermelon stomach though just like that – so that is telling right there! ….- so this is really addressing my stomach in ways I have never touched in detoxing before
…Some say it helps reduce their bacterial load or clear lyme / bartonella –

I think it really does reduce bacterial load!
Another thing to help with detox, digestion, assimilation, bacteria (helps with Candida, too) while helping bust biofilms (or: for that purpose, just Haritaki, 1 of 3 ingredients of Triphala), is Aurvedic combination of 3 Indian gooseberries, Triphala. It is quite phenomenal and gentle, though it will cause loose stools which as is mentioned, is not a reason to worry, as it detoxifies all digestive tract and works on all the “bad guys” there.
http://www.planetherbs.com/specific-herbs/the-wonders-of-triphala.html
http://www.raysahelian.com/triphala.html

I have made def. inroads in lessening & improving circulation – more to go still – but i feel I am finally making progress

Keep going!!!!I just imagine you writing 3 months from now that you feel practically recovered!

it took me almost a year before i did try LDN – as I read of so many who said it either didn’t help them or they had trouble on it –

I’m so sorry, I was one of the posters who discontinued because I got utterly morose while on it, though it did help me sleep better. Now to prevent sinking into depression, I restarted Siberian Ginseng. It has always helped me with stress and better mood. There were many very positive LDN posts about 2 years ago.

I just pray for wisdom in being able to separate out what NW offers as to what is best for me.

It would be lovely if we and our docs could be omniscient even just for the treatment plan!
Best wishes on your journey and visit at NW! I can’t wait for the post about how all of a sudden you are practically all recovered! I DO feel it will come, just can you make it sooner rather than later?
Warm wishes, Krys

[gratefulgirl]

Krys & Jill, you are both so inspiring! Thanks for your thorough posts. Your encouraging notes, Krys, I’m sure are felt by everyone who reads them, though they are addressed to Jill. I treasure the information we all share here & the love is truly palpable. Such a caring community.

OK, I need to learn how to do the quotes as you did Krys. That was nice to see Jill’s concerns addressed per quote, all in one post.

I also need to look into that infrared wand. Please share any links that give more info if you have found any! I love my FIR sauna and follow that with Magnesium gel with Lawang oil (it’s harsh on overdry fingers, so I use gloves when applying the gel). I notice the Magnesium gel really helps to reduce any ankle swelling that appears & allows for less stiff & painful movement of the joints! But gloves are a must for me. I do the FIR sauna on the day that I do my Minocycline which I take every other day. I’m now 4 months old as I like to say it, meaning 4 months on Minocycline!

Many hugs, GG

[vera]

I, too, had immediate results after taking LDN the first night. Started with 3.5 mg, but after a couple weeks, bumped it up to the full 4.5 mg dose. It was incredible how much better I felt the next morning following the first dose! I made the mistake of not taking it one night, and decided to go a few nights without LDN just to experiment and see how I felt. I got sick (very bad cold) which I read can happen.

Best!

Lori

[Krys]

@gratefulgirl wrote:

Thanks for your thorough posts. Your encouraging notes, Krys, I’m sure are felt by everyone who reads them, though they are addressed to Jill.

Thank you for your kind words. They are really addressed to anybody for whom they may be useful. So sometimes info is overdone, just in case someone new might need it.

OK, I need to learn how to do the quotes as you did Krys.

First you press “Quote” right by the avatar of the person whose post you want to quote. The reply window will appear containing the whole post you chose to quote. You delete the part you see as redundant to your reply. Then left click with your mouse on the part you want to quote (just like for deleting) and keep moving the mouse so that the text you want to quote is all covered in blue. Hold the text blue and move the mouse to the little “Quote”window above your reply and click on “Quote”. You will at first have 2 “quote” brackets, one with the name, one without. You’ll have to delete one, or the additional “quote” in brackets will show up, too.
You can move the rest of the text downwards to have uncluttered space for replying. After replying to the quoted part, delete the parts of the remaining text that you do not need, leave what you want to reply to, underline and press “Quote”. Respond, proceed to the rest of the text left from the quoted post, delete all or anything not needed. Click “Preview” window under your reply to see what it will look like. Make any corrections you want. You can keep checking on “Preview” as many times as you want. Once done, click on “Submit”.

You can quote from as many different posts within the thread as you want to. Next quote is done by pressing “quote” by the name of each poster as seen in the thread under the window of your reply.
I hope I did not make it sound too confusing!

I love my FIR sauna and follow that with Magnesium gel with Lawang oil (it’s harsh on overdry fingers, so I use gloves when applying the gel). I notice the Magnesium gel really helps to reduce any ankle swelling that appears & allows for less stiff & painful movement of the joints!

Thank you! I’m not familiar with it. Sounds better than magnesium oil which I use (it’s quite stingy on the skin). My ankles have always been swollen, sometimes like elephant legs. Surprisingly, since keeping the diet without any cheating for prolonged time, they are mostly OK, but the calves are borderline cramping, so any transdermal magnesium is most welcome! I’ll try Magnesium gel with Lawang oil! Thanks!!!
Once I learn how to use the FIR wand, I’ll share!

@vera wrote:

I, too, had immediate results after taking LDN the first night. Started with 3.5 mg, but after a couple weeks, bumped it up to the full 4.5 mg dose. It was incredible how much better I felt the next morning following the first dose!
Lori

Lori, I envy you!!!
I think it’s been 4 nights that I’ve taken it 1,5 mg. That’s how it was prescribed for me 1,5 years ago, to be increased to 3 mg after 2 weeks and then after 4 weeks to 4,5 mg. In the past, I discontinued it after just 10 days because I became utterly morose, otherwise I felt quite good. It did help me sleep and good sleep stayed with me for months! Now inspired by Jill and the rest of you, I’m going to stick with it. I hope Siberian ginseng will keep my mood good. If not enough, I’ll look into some other mood enhancing herbs, but will continue LDN.
Maybe I should have started at 0.5 mg and increased from there. I’m sooo sleepy all day long! I do take it with time release Melatonin (that’s a new addition: I did not take time release before), so maybe the last one is responsible, or maybe my body finally responded to the signal that it needs to rest and is letting me know I should listen! 😉
I believe the “sleepy” part is a huge blessing, I do need to sleep better and longer!
Warm wishes to all, Krys

[tbird2340]

gratefulgirl, do you have an update of how you are on the LDN?

I’m thinking I want to try and get my LLMD to try this on me..

Thanks

[gratefulgirl]

Hi Vera, it’s so good to hear that you, too, had quick results. I will be sure to try and not miss my evening dose! I’m still getting used to paying attention to the time so I don’t forget to take it!

I did over estimate my ability to run on the beach yesterday morning. Oy did I pay, plus I still experienced herxing all day. But I definitely feel stronger as far as lifting even my heavy purse & many bags & containers I take to & from my boutique. I’m back to taking Magnesium Taurate 125 mg every 4 hrs. My body tells me when I forget a dose and it is forgiving once I take it.

I think LDN is a must, at least for me. It’s just adding to my arsenal in my battle to right my immune system & beat the bugs!

Be well! GG

[gratefulgirl]

@tbird2340 wrote:

gratefulgirl, do you have an update of how you are on the LDN?

I’m thinking I want to try and get my LLMD to try this on me..

Thanks

Hi Tbird, as with each new drug or supplement, I hope for a miraculous change/ cure. As mentioned, LDN worked right away for me. It seems to take effect in two hours. Each night my bare feet feel like their old selves when I take that walk for my pottie break. I also feel like stretching out my limbs (in a good way).

By the am, I’m back to feeling stiff, but a little less than before taking LDN. I get up to drink a huge glass of water with my first dose of Magnesium Taurate/ 125 mg, Relafen/ 750 mg & B 12 vit.

Where my appetite was nil & I was losing weight too much, I’m back to a good appetite & gaining again! The only thing I’m doing differently is taking LDN. Even though I have a slight build (5′ 3″ at 108) I did start off at the 4.5 mg right away and made sure to order it from a reputable compounding pharmacy. I ordered from Irmat who does quality testing. I found this link very helpful: http://www.lowdosenaltrexone.org/

I realized on day three that this will serve to strengthen my arsenal of goodies to right my immune system and rid the bugs. It is part of a great package that had I not read from other’s posts on this site, I would not be in the fabulous shape I sometimes feel I’m in. Yes, there are times when I feel energetic, and longer pockets of time without aches or pain. It’s similar to when I was on Prednisone 10 – 20 mg & feeling amazing. Granted, my grip is still not 100%, but I feel some improvement.

In these very few days, I seeing some reduction in my ankle & elbow nodules. That’s really saying something! I do feel that the combo of LDN, AP & Magnesium (q 4 hrs). I think that the LDN & Magnesium seem to enhance the benefits of the other.
I also love Magnesium Gel w/ Lawang Oil, It provides great relief & reduces my swollen ankles. http://home.earthlink.net/~hs4u/id36.html

Sleeping is greatly improved. I might not sleep straight through the night d/t needed potty breaks, but when I do, it’s deep & quality sleep. I awake much earlier feeling rested.

I’m excited to see how I further make gains since starting LDN & will be glad to update everyone here. I really want to play tennis again, some day!!!!

Take care, GG

[vera]

Krys,

It was shocking to me that the LDN actually DID work for me, as I didn’t expect much! From what I’ve read on the LDN site, it takes a good 18 months for LDN to do what it’s supposed to (not unlike the 3-5 years for minocycline). I went thru ups and downs on it for sure. The benefits slowly continued to come, until one day I realized that I don’t have this or that problem anymore. However, like anything, it probably isn’t going to work for everyone. If you can tolerate the side effects for awhile, I hope you can hang in there with it.

I can’t exactly remember, but thought I read somewhere that LDN can cause detox, so I often wonder if that’s why some of us feel worse on it for a while. One side effect that I don’t like is all the dreaming. I just live with it because I sure don’t want to go back to where I was 3 years ago! Best of everything to you, Krys, and I sure hope you get some good success! Hang in there! 😉

Lori

[Krys]

@vera wrote:

It was shocking to me that the LDN actually DID work for me, as I didn’t expect much!
…it takes a good 18 months for LDN to do what it’s supposed to …
Lori

18 months! That’s a very good exercise in patience. 😳 I’ll benefit from working on that one! 😆
I so love immediate gratification! 😆
And you’ve taken it for 3,5 years!!! Thank you. I needed information like that. Wow. I’m so very impressed with your perseverance and very happy the results are so good. Congratulations, Lori!!!

I went thru ups and downs on it for sure. LDN can cause detox, ……I don’t like is all the dreaming…….If you can tolerate the side effects for awhile, I hope you can hang in there with it.

Would you be willing to say what side effects, what downs?
4 days on it and I already need reassurance.
I’m so exhausted and it feels like some deep soul wound has opened up. Bones hurt. Maybe I’m going through both physical and emotional detox. If it helps people with MS, I definitely should keep on. 18 months??? I think I’ll reduce the dose by splitting the capsules into 2 or 3, to get 0.5 or 0.75 mg dose and keep digging for emotional help.
Actually during today’s acupuncture session, I asked again about FIR wand and using it on acupuncture points and the doc said that stimulating (all) acupuncture /acupressure points raises the levels of endorphins. While talking about points below the knee caps (4 fingers below the knee cap, in the indentation on the side of the leg) that I “prescribed” for my mom 20 years ago to help with emotional stamina, I touched the points and discovered they are very painful!!! My mom got herself through drug withdrawal from over 15 years of tranquilizers (which she stopped cold turkey) by pressing on those points for most part of the day.
So I found myself a method that will help me get through. As this point also stimulates physical endurance (and digestion), no wonder I feel so depleted!
Lori, thank you very much for encouragement.
My deep apology for what sounds like wailing. It’s not LDN, it is my individual chemistry and my own specific toxins coming to the surface to be dealt with. Ugrh. No wonder I keep talking about detoxification so much! 😆
Warm wishes, Krys

[vera]

Krys,

I can sure appreciate what you are going thru!! One of the places that helped me learn about LDN was the website lowdosenaltrexone.org. I spent many, many, many hours reading about it, and also watching the videos by the LDN experts. It seems to be similar to mino in that you can go a couple steps forward and then backward – but you eventually make progress. 🙄

In terms of the ‘downs’ – I would say that sometimes the pain would suddenly get worse for awhile, and then I’d think, Oh! it has stopped working. Or, I’d just feel tired, or achy, or whatever. Believe me, the progress can be slow, but when you look back over the past year, you will KNOW you feel better than you once did.

Now that I’m also taking the mino, I suspect my herx are from the mino, but you can definitely herx from LDN!!!

I envy you being able to have accupuncture. It would be something I’d love to try again, but not in the budget. It’s great you found a way with the accupressure for a little relief!

I’m with you – immediate gratification and results are great! Well, you hang in there and keep experimenting. 🙂

Best to you!
Lori

[Krys]

Thank you, Lori. Very precious info! My LDN herx is getting better.

I envy you being able to have accupuncture. …I’d love to try again, but not in the budget. ..Lori

Lori, acupuncture is the only reason I’m not failing abx.
And I cannot afford to fail them because they are working for me. I also seem to need supportive measures, plenty of them. Hopefully, in time, LDN will be enough.

Kate mentioned some time ago acupuncture at TCM College for $45 a month (4 sessions + any amount of stand-in sessions). viewtopic.php?f=1&t=7790&p=63010&hilit=Kate+acupuncture#p63010
One of college clinics in my city charges $10 a session. FIR hand held unit is about $20 at Amazon. If it works on acupressure points, I’ll be using it.
Krys

[vera]

Krys,

Thanks for the tip on the TCM accupuncture – I will definitely look into that!!! That would be fantastic if I could find it as cheap as that. Had accupuncture years ago, and always felt better afterwards, but didn’t stick with it long enough (only 18 months).

Take great care!

Lori

[Krys]

@vera wrote:

… didn’t stick with it long enough (only 18 months).
Lori

Sorry, Lori, I find it irresistible: ONLY 18 months?!??
I’m definitely learning patience from you!
I’ve been doing it for a little over 8 months and have been looking for reasons to quit all the time. But I keep needing it, always something new comes up and it helps.

Your post about herxing on LDN and thoughts of quitting (feeling that it was not helping) only to notice that indeed it was, has helped me shift my approach to LDN. When I stopped treating it as an adjunct and started treating it as part of my protocol, somehow everything has become all right. Accepting herxing however it chooses to manifest makes it easier. Thank you!!!
Had very vivid dreams 1,5 years on LDN. Last few months too many, too vivid without LDN. And last 4 nights on LDN: none. Nice!
Have just enjoyed reading some very old LDN threads on RBF. There’s even a mention how to dissolve 50mg Naltrxone in distilled water, take it with a dropper and make it cheap Low Dose Naltrexone.
Krys

[vera]

I tried to get the LDN in tablet form to make it myself, and the pharmacy I get mine from told me I couldn’t purchase it!! If anyone knows where to purchase the tablet, that would be good information.

Unfortunately, if you don’t have an initial bit of encouragement on LDN or anything for that matter, it can be very discouraging to stick with something. It seems the norm NOT to have immediate results – so hang in there!!! Like you said (I think), our bodies must peel thru layers of toxins, etc, so herxing is likely inevitable on LDN.

Yes, I know! 18 months sounds like a long time! Just kept hoping accupuncture would work! But, after learning AP takes 3-5 years, I’ve discovered I need a lot of patience myself! 😆

Best!
Lori

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