Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Hi,
Well, I don't think this treatment is going to work for me. After about 8 weeks of treatment, I actually had a deline in my immune cell counts, and sure the heck don't feel better.
I had a very difficult time with side effects, which is sort of strange, becuase I take large doses of abx and Mepron without much trouble.
For the first 2 weeks, I ahd very littel problems with the drug at the 4.5 mg dose. Then I began to have increasing insomnia, anxiety, depression, and diahrehea.
We cut teh dose back to 2 mg, every other day, and still I have problems, then cut it back to 2 mg every third day,and still had problems, and then I had teh blood work doen which showed a decrease in immune counts.
My LLMD said that Dr. H at the ILDAS conference said that about 50% of his patients got a lot of benefit from the drug, and the rest got nothing. My own LLMD told me that more patients benefitted than not, but that there were some people that don't respond to teh drug.
Below is some information I gleaned from the "LDN" MDs.
According to the Stanford pilot study, benefits of LDN lasted up to two weeks after the LDN was stopped, a so called wash -out period. Dr. Ian Zagon and Dr. Bob Lawrence also mention that, for some patients, it seems they may be accumulating the LDN, and that dosing at lower levels and skipping days can be more effective while reducing side effects. Dr. Bihari reports that some patients need lower dosing of LDN.
Signs that LDN may be accumulating, or that initial dosing is to high include; Insomnia, Vivid dreams, sudden night-time need for urination, nausea, headaches, anxiety, diarrhea, jitteriness, rapid heart rate, and day time sleepiness and depression. Lowering the starting dose and/or skipping 1-3 days, and then increasing gradually can reduce effects. Some patients start out as low as 1.0 or 0.5 mg.
Optimal dosing for some patients can be 1.0 mg, every other or even every third day.
Some patients find that LDN initially seems to help, but that then stops working. In that case, it might help to stop for a week and start over.
There is a patient Yahoo group for people taking very low doses of LDN. All of them take less than 1.5 mg, and are still reporting benefits. A few take 0.5 mg every other day.
The problem of accumulating in the liver is why Dr. Zagon is recommending "Less is More". In order for this drug to work well you have to have so many hours on...so many hours off. If there is accumulation in the liver you have no time off the drug. I am simplifying, but I hope I am making the point well.
Dr. Zagon believes 3 mg is the ideal therapeutic dose for long term success with this drug. You take it until you feel well for a week or so, then take it every other day. See how you do on every other day...if all goes well, take it every 2nd day. Then you try every 3 and 4 th day, etc.... If you find at every 3rd day you go backwards, and you did better on every 2nd day then go back to every 2 nd day for the duration. Each patient is different, so if you know someone else with your diagnosis taking it every 2 days, don't assume that is what you will be doing for success
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
| IP: Logged |
btmb03
Unregistered
posted
Sorry you didn't see any benefits with LDN - It's definitely in my future. Could you elaborate on what you meant by immune cell counts? My LLMD never mentioned measuring anything like that.
Thx for your first-hand accounts, it definitely helped to hear about it!
IP: Logged |
Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
We look at my overall White Blood cell count, and then look at the standard "panel", i.e. nuetrophils, esinophils, basophils, lymphocyste and monocytes. Also we check CD 57.
In my case, my overall WBC went lower, along eith the lymphocyts and monocytes. CD 57 dropped too.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
| IP: Logged |
btmb03
Unregistered
posted
Thank you so much for responding to my question..take care!
IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Amanda, see my post on BRM4...may be worth a shot at boosting some facets of the immune system...
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!
Printer-friendly view of this topic