I was reading the conference notes from the BioResource Conference. Thanks Scott for providing these notes for the rest of us.
My question is are the docs in disagreement regarding the benefit of LDN?
Dr B notes -- cytokine suppressors result in the infections becoming more active.
Dr H, NY notes -- LDN at 4.5 mg per night can be amazing. No side effects except for initial sleep issues. Shuts down the cyokine faucet. ---------------------------------------------
Hubby tried LDN (low dose naltrexone back in December). Thought maybe it was helpful at 2.25 mg. He did that dose for a couple of weeks and then I increased it to the standard 4.5 mg. He felt worse on the higher dose and actually thought that that contributed to his symptom crash and hospitalization in December. This was before he started his babs treatment. Was still on IV Rocephin and IV Zithromax at the time.
Bea Seibert
Posted by Myco (Member # 9536) on :
I would like to know the answer to this also.
Posted by txgirl09 (Member # 21612) on :
Not sure about this Bea, but I wonder if your husband ramped up too fast. I see Dr H and I very slowly (like 3 or 4 months) ramped up to 3mg. I started out at 1 or 1.5...something like that.
Posted by seibertneurolyme (Member # 6416) on :
txgirl,
You are probably right -- but the neurologist who prescribed the LDN only wrote the scrip for 4.5 mg capsules. I did at least split them myself and start hubby at half dose.
I do get aggravated at docs who expect patients to start all meds at therapeutic dose -- hardly ever works for hubby. And I know there are many others out there that start things with 1/4 "normal" dose like we usually do.
Bea Seibert
Posted by gracefullyteaching (Member # 30654) on :
I just started LDN 3 nights ago at 3 mg. So far, no side effects and have felt pretty good the last two days. Time will tell.......... very interested in this thread. Thanks!