Just got my recent labs back and my CD 57 which had been at 20 for years and not moving at all jumped all the way to 107!
That is a huge improvement from March until now. In March I was still terribly ill. I am doing so much better now. I credit the LDN.
Still have a lot of healing and work to do though, but am finally feeling like I'm moving in the right direction.
LDN has helped with my pain, being social again, and my immune system to work again.
Posted by jwall (Member # 22999) on :
I was excited all day that my NK cells were back in the normal range! The things that make me happy now. Of course, my WBCs are still low at 3, but improved from 2. And a few of my other NK cell numbers were flagged low. I think CD 19 was one of them. So I still have work to do.
Posted by CD57 (Member # 11749) on :
Hey that's really great. There are some folks here who have seen big improvements with that. It helps the humoral immune system I think, as opposed to the cell-mediated or innate?
Posted by mlg (Member # 35383) on :
Great to hear that you are doing better!
Posted by beaches (Member # 38251) on :
Good news! How long have you been on the LDN? It takes a very long time to see positive results--at least 6 months regarding immune system changes.
I think it's a miracle drug.
Posted by jwall (Member # 22999) on :
I have only been on LDN since May. Maybe it's that my body is finally beating the Lyme with regards to my CD57 #. I thought it was the LDN. would LDN help my WBCs go up?
That would be quick improvement though if it takes 6 months to see real improvement. I still have babesia to work on.
It helped right away with pain though, so maybe since it has helped with my pain and inflammation, my body is finally responding.
I have also been doing high doses of IV Vit. C, IV iron and herbs.
Posted by Energy2Heal (Member # 2010) on :
jwall,
What dose of LDN have you been taking?
Posted by AuntyLynn (Member # 35938) on :
Um, what is LDN?
I vote for that high dose IV C though, definitely!
Linus Pauling claimed to cure "hopeless" cancer patients with IV C.
Posted by jwall (Member # 22999) on :
I take 4.5 mg - the therapeutic dosage. It has to be 4.5 regardless of body weight. I started with 1 mg and increased by 1 mg per week until I reached 4.5.
A little trouble sleeping at first, but it was fine after a few days of adjusting to the new dosage.
It is just really nice to not be in so much pain anymore. I had severe pain issues. I still suffer from pain, but it is mild compared to what I've been through.
Posted by AuntyLynn (Member # 35938) on :
Wow Jwall - Thanks! Interesting stuff!
Posted by nefferdun (Member # 20157) on :
It doesn't have to be 4.5mg. That is the most you can take. I take 3 mg which is an average dose. The least you can take and get any effect is 1.75 mg.
LDN is amazing. I just received a message from someone asking about my son who is on it for his type one diabetes. He has not lost more beta cell function, we don't think, as he does not have to take insulin. The person who emailed me said his daughter cut her insulin requirements in half on LDN.
I feel much better too. My husband is on it. My brother started and now his whole family is on it. His son is not sick but he feels more up beat emotionally. His wife says she has more energy and handles stress better.
I should get my CD57 checked.
Posted by Catgirl (Member # 31149) on :
Right on!
Posted by CD57 (Member # 11749) on :
How long does it take to see a difference? I gave it about 2 months I think, didn't notice anything except worse sleep.
Posted by linky123 (Member # 19974) on :
What kind of doctor prescribes this? Is it mainstream or just llmd types?
We have blood sugar issues on both sides of our family, so this is quite interesting to us.
Posted by linky123 (Member # 19974) on :
^
Posted by jwall (Member # 22999) on :
My local LLMD who is an integrative medicine Dr. prescribed it. My well-known LLMD in DC also puts patients on it, so you just need to ask your Dr. for it and he or she should know (if he or she is a Lyme Dr??). I don't think a mainstream Dr. would know about it, but I'm not sure about that.
It boosts the immune system by increasing endorphins...also helps with pain and mood. I get mine from a compounding pharmacy in AL.
CD57, I've been on it for almost 4 months now. STarted in May and just had labs drawn a couple weeks ago showing my CD 57 jumped from 20 - 107. My CD 57 in March was 20 and I felt terribly sick still after 10 months of IV antibiotics and a year of oral antibiotics. When I started treatment, it was right around 20. I am doing much, much better these days. I am still sick and working on things, but overall much better.
I had trouble sleeping for a few days after increasing the dosage, but then was fine.
Posted by sapphire101 (Member # 6638) on :
So glad it's working and you are feeling better.
Connie
Posted by tofumama (Member # 22456) on :
Just to warn you, and not trying to be a Debbie Downer...but this happened to me. I LOVE LDN, and have been on it close to 2 years. I noticed though, as of the last few months it has not been working as well...my immune system has been down, and lo and behold, I am back in a flare There are several things that can contribute to LDN losing its effectiveness- 1)Candida, which I have. 2)mega abx use- which I have had to do 2 out of the last 4mo. 3)SOme other immune issue- I, even though I knew better, took steroids after having an allergic reaction to a bee sting(I am allergic, but have delayed responses, did not use an epi pen and the ER gave me steroids) Steroids and Lyme are a HUGE no-no. That was what started me back down this path after almot 18mo in remission(80-90% better which is good enough for me after having this for 20yrs)
Bottom line, IF it feels like it is losing its effectiveness, it may be becaue something else is going on, not because the LDN doesn't work. You have to address the other issues. I plan to, and go back on it as soon as I can, as I feel like it gave me my life back.
![[Smile]](smile.gif)
Of course, my WBCs are still low at 3, but improved from 2. And a few of my other NK cell numbers were flagged low. I think CD 19 was one of them. So I still have work to do.
![[Frown]](frown.gif)