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

[cavalier]

I was using Mayos reference ranges as my labs had no reference ranges – I need to correct what I thought was still a barely elevated SCL70 & sjogrens SSA & SSB they are NOT elevated I had a fax sent to me today of the NW reference ranges I am in remission from SD!! However I still have PH to deal with – so it is not all good news! but this mirrors how I feel! and look now!

Oddly when I threw up blood in Aug on the 24th & was admitted for my heart I had to stop AP as I could not keep anything down my stomach was pretty tore up & remained as such for some time I had always done kefir & yogurt & lots of Probotics but I tried a few times in Sept to take only Zithromax but I got queasy every time I did so my stomach was just saying NO! As a matter of fact i only took it once this week to try again – same thing. I stayed on just the melatonin & LDN during this entire time as it agreed with me & I was getting improvements which I had started end of July. I had seen my SCL70 #’s move down in Sept but still elevated but lower – well I am still making 2 autoantibodies in recent tests but that is all that is showing now. If one wants to read the note I sent to Dr S. I will post it under the thread for Trip to NW & PH or something like that … it will give the details – now what works for me is exactly that for ME & I cant stress that enuf – what is wrong or what bacterias we have or dont have are going to be different – but mainly it is seeing what works and sticking with it.
While doc’s wont like to recognize that something else could work I have no doubt LDN was what my body needed as I saw coupled with melatonin a direct response & I really did finally expect to see the #’s reflect the good changes I saw finally happening to my skin outwardly. I also feel the antiinflammatory diet was a part of this and 11 months of AP all of those things hd a place but it was for me layers that turned the corner – the final shove towards pushing me up and over. NOW I just have to find the same key for my PH and I will be more than joyful. It shows faith & perservance are key & to keep digging til you find what your body needs.

Jill I can drop now the word SD from behind my name now to get a CD57 test next.

[cavalier]

Oh I do plan to remain on LDN & on Melatonin.

Jill

[gratefulgirl]

Hi Jill, I’m so happy for you! And I don’t doubt that you will be able to rectify your PH.

Keep up your diligence & faith that you are on the best path for you!

To your health! GG

[cavalier]

I hope so GG! Thanks for the confidence I hope you are right my lungs are scary as I already have one lung paralyzed from scar tissue that took down my phrenic nerve so I dont need PH on top of this impairing my breathing no wonder my poor heart is working so hard.
I should mention I also started taking thyroid med – armour thyroid replacement took approx. 2 wk’s after I started taking LDN & melatonin – which this also helped as I was low thyroid to get my immune working better again.

Best to you Jill

[tbird2340]

Got my LDN yesterday and took my first does last night at 10pm (3mg)..

Feel the same this morning, no changes. I realize it doesn’t happen overnight for everyone.. Just posting my first dose! 🙂

[laurawm]

I also tried my first dose last night – 1.5mg to be increased to 3mg after 1 week and 4.5mg on week 3 if needed. I think I felt a slight decrease in swelling upon waking, though I was still up throughout the night with pain. We’ll see how it goes as I increase the dosage.

Laura

[gratefulgirl]

T-bird & Laura, that’s great. I look forward, as I’m sure others are, to hearing of any changes, progress you feel along your journey!

Laura, I feel that I would not have as much pain relief without the use of my FAR infrared sauna. I try to do this the day after my Mino dose. I, too, take it every other day at 100 mg. I take it at bedtime, away from my last Magnesium dose & away from my LDN, so it usually ends up being taken at 11:30 pm.

When I do have those moments of tightness, joint &/ or muscle aches or pain, I feel almost immediate relief after applying Magnesium w/ Lawang gel. It is very irritating, so sometimes I apply with gloves. I also use heating pads during my sleep. I have one under my pillow for my shoulders, when sleeping on my sides and one for my hands. I understand that the bugs hate heat and I find it so comforting!

What dose Minocycline are you on?

To life, to life & your health!!! GG

[laurawm]

Hi Gratefulgirl,

I just updated my sig line – I am now on 100mg doxy once a day instead of mino as I could not handle the herx from mino right now. Doxy is still bad, but a bit more tolerable.

Thanks for the info on the magnesium gel – I get some relief from taking liquid sea mineral high in magnesium, so this makes sense – I guess it’s a great detox. I have been considering an infrared sauna, but haven’t quite gotten to that level of detox commitment. I guess part of me keeps thinking this whole thing will be over soon, but I know there is a long road ahead and detox is key.

I’d like to try a higher dose of LDN already, but I don’t want my script to run out, so I will likely take it as prescribed and hope for the best.

Thanks for the feedback – always needed and appreciated.

Laura

[tbird2340]

4 doses and no relief yet.. Just posting as an FYI.

🙂

[gratefulgirl]

@tbird2340 wrote:

4 doses and no relief yet.. Just posting as an FYI.

🙂

Hi T Bird, hang in there! I felt another baby turning point yesterday in my overall feeling of pain relief & thus improved mobility, walking, stretching even dancing (even though it was while a passenger in a car). I’m now doing isometrics while standing. My thigh & arm muscles have experienced wasting since I’ve not had the strength to lift them for so long. Now that is reversing & I can do something about building back what muscle mass was lost 🙂 .

I was wondering, & I know we are all different in responding to AP, but I had tried Minocycline 100 mg daily and realized the daily dose was likely causing my body to battle the Mycoplasma — a good thing, but it also caused an upsurge in inflammation & thus, pain, swelling and stiffness. So I experimented w/ the pulse M,W,F dosing, which did not work for me – since by the Sunday off day I was feeling lots of pain. I finally have what seems a good balance for me at the every other day dosing, still at 100 mg.

I noted in your sig line that you are taking 400 mg Minocin daily. I don’t have Lyme (or just haven’t been dxd yet), just the RA, so maybe that’s recommended for folks w/ Lyme. I just have read that our bodies need some time to allow for tissue reparation between the oxidation stuff that goes on when the antigen release & subsequent antibody release battle occurs. (I know I’m not quoting Dr. Brown’s theory exactly so please – anyone – correct me on this!) Again, I stress I’m NOT the expert, just hoping to be of help, if I can with what I’ve read & experienced in the AP dosing world. I reread Dr. Brown’s book and Lynnie/ Sydney & Maz’s shared Dr. Brown links just to remind myself about all the good & proven things that have gotten me to this point. They are so much better than I am at explaining all this to us. I’m so grateful to both of them and others who have shared info and experiences and encouragement 😉

Also, do you take anything for pain relief/ anti-inflammation? That is so important, in your AP regimen. Phil C & others have shared that Relafen/ Nabumetone is the most gut friendly NSAID. I now take Relafen at 750 mg BID which has been working for me.

And I can’t stress enough about detoxing measures (Maz shares an extensive list in her personal hx thread).

Be happy, Be Well! XXOO GG

[gratefulgirl]

I just wanted to update everyone on my progress. Yes it continues!!!! And I can say this through all the stress of Hurricane Sandy that had us evacuating our home after lots of physical preparations to ready the house for the worst. Because we live on the Long Island Sound & had endured the brunt of H. Irene, we decided to lift all furniture off the first floor, place tarps & buckets upstairs, etc. Well, as most of you can relate, stress and heavy lifting is not advised for those of us with RA.

What I can say is this, at 5 months on AP & about a month on LDN, I did remarkably well 😀 ! Fortunately, our house remained untouched, except for the expected flooding in the basement & fences & boats & decks scattered throughout the neighborhood, there was just the clean up to deal with & lack of electricity!

I’ve been bending & wading through water & lifting things, then living in a cold house without the aid of heating pads or my usual FIR Sauna treatment. And on top of that, I’ve been real naughty & having a martini or wine or a glass of beer when out to dinner each night! I continue to eat what is in front of me, so no gluten free diet at all. With all that, I feel as if I’m doing really well! My joints are steadily improving with a range of movement that is almost back to normal.
And I don’t feel horrible if I am late for my Relafen/NSAID.

I’m far from 100% wellness, but am really encouraged that I have not done any backsliding whatsoever with all that’s been going on! I hope this helps to encourage anyone out there who is wondering if AP or LDN works. It really does. I used to constantly feel pain, stiffness, discomfort in my muscles and joints; and now there are longer moments of not feeling any of that. I forgot to use my Magnesium gel with Lawang oil today, and am not the worse for it, either. Yippee!!!!

Blessings from GG!

[A Friend]

Krys wrote:
…. A Friend posted that magnesium chloride is quite superior. One can get it in powder, flake form or encapsulated at Amazon. I’ve only used mg citrate, malate and glicinate and have not noticed any difference. Will be happy to try taurate and chloride. My body needs big amounts, maybe taurate and chloride will be better absorbed. …Krys

Hi All,
Was just now doing a search for something related to magnesium chloride and a post with the above comments showed up. Just want to clarify a bit about the comment. I’m hoping I didn’t state that magnesium chloride is quite superior… though I personally came to believe it may be. It was in Dr. Sherry Rogers books in the Appendix that she gave her recommended products and places to order. I decided to order it because in Dr. Sherry Rogers books: Detoxify or Die and another, Painfree in Six Weeks, I read about MagChlor (that it is a liquid form in a dropper bottle, and is the strongest you can get without an RX). It was at this point in time that I’d decided I was going to have to get the IVs in order to get my pH level/acidosis in a more consistent healthy range. So, I was very anxious to give MagChlor a try (more convenient and cheaper than IVs). Also, I had been reading much about magnesium in Mildred Seelig’s online book on Magnesium in the Pathogenesis of Disease (using the Find feature, you can do searches inside the book, and find uncanny research about many diagnoses)– and Dr. Seelig was high on magnesium chloride. So, these are the reasons I began using this stronger MagChlor liquid which I order from Pain & Stress Center lab in San Antonio. Some of my younger family members have loved it too, because it made their hot flashes go away.

I’ve been missing all of you,
AF

[gratefulgirl]

Hi AF, I hope you find that Mg Chloride does just what you hope! I seem to do just fine on the Mg Taurate and am still needing about 125 mg q 4 hrs. I really start feeling the pins & needles coming on in my left arm when I skip a dose. Other than that, I’m continuing to make good strides w/ my AP, LDN & supplement regimen. Am looking into yoga & pilates that specializes in helping those w/ rheumatic conditions now.

Be well!!! GG

[A Friend]

GG, thanks for your note. My beginning taking the MagChlor was several years ago and it really did/has made a difference. However, when things really started “coming up roses” was when I added the ImmunoPro nondenatured whey protein once daily at bedtime, in addition to the MagChlor taken during the day. After the whey protein was added (more reading on amino acids made me know I needed the amino acids in it), my pH has been right where I wanted it to be and where it needed to be. Guess I’ll keep on using these forever… along with the Budwig combination with Essential Fatty Acids, which rescued me about 12 years ago from a serious wasting syndrome [suggest reading article:

[gratefulgirl]

Hi AF, Ah, I see. So glad it has worked so well for you. I just read the reviews for ImmunoPro nondenatured whey protein under the iherb.com site — they are really encouraging. I will order this & give it a try. I’m trying to give anything added to my regimen a month before trying something else, so it’s about time to try what you say had you “coming up roses”!

Thanks for that info & your well wishes!!! GG

[Author]

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