posted
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.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
Great to hear that you are doing better!
Posts: 697 | From CA | Registered: Dec 2011
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
posted
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.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
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.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Wow Jwall - Thanks! Interesting stuff!
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Right on!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
How long does it take to see a difference? I gave it about 2 months I think, didn't notice anything except worse sleep.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
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.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
^
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
posted
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.
Posts: 618 | From NC | Registered: Oct 2009
| IP: Logged |
posted
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.
Posts: 13 | From MA | Registered: Sep 2009
| 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!
![[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)
Printer-friendly view of this topic