LDN-non MSer, but thought some of you would be kind enough to help

[peglem]

Hi, I usually post on the autism forum, but nobody there has experience with LDN.

Here's the deal. My 15yo daughter has autism. But she also has an autoimmune disorder (PANDAS) caused by strepA antibodies cross reacting with basal ganglia in her brain. She has been on prophylactic antibiotics for that @2years.

She started LDN at the beginning of July. The 1st week was a bit rough, but we fiddled with the dosage and things improved. Her prophylactic abx(zithromax) is given for 5 days and then she takes 7 days off. After the first few weeks, I began to notice that the days I gave the abx, her behavior symptoms would flair. This is the opposite of what happened prior to the LDN.

At the end of August her strep came back. (she had chronic strep before the prophylactic abx) But the streppy symptoms (behavioral) were less severe than in the past, I think because of the effect of the LDN. We're having trouble eradicating the strep again.

So, my questions: Does LDN interfere w/ antibiotics? For those of you using it, have you noticed anything like this. I know its supposed to modulate the immune system.

I'd sure appreciate any feedback, tips, observations you can offer. Thanks.

[Lady]

Hi peglem,
I take LDN for Multiple Sclerosis. It has also helped my autoimmune Thyroid, my autoimmune stomach problems, my autoimmune allergies, and definitely my autoimmune MS.

I haven't needed an ABX since I started taking the drug in December 2008. So I don't know LDN's effects on them. I haven't needed a pain medication since then either. Also, I haven't needed steroids since then.(knock on wood)

As for your question, that is probably going to have to be answered by the Pharmacist who compounds the drug for your daughter.

If that Pharmacist is unsure of the answer, you could try to call Skip's Pharmacy. Many get their LDN from him, with the proper doctors script. He is very knowledgeable, and answers questions with a phone call. He is located in Florida.

Sorry I can't help you. I do hope you find out the answers to your questions for your daughter. I hope she feels better soon. :)

[peglem]

Thank you, Lady. My daughters LDN is not exactly compounded. It was prescribed by her psychiatrist and is dispensed at a regular pharmacy in 50 mg tablets. The pharmacy sells me flavored H2O, with anti bitter in it in 50ml amounts. I crush the tablet and dissolve it in the water- so 1ml contains 1mg of naltrexone.
The prescribing doc only prescribed it on my word (I actually forgot to bring the research to the office), because she saw no harm in it and my explanation for how it works satisfied her...so she's not likely to know one way or the other.

But, I googled and found that in some cases LDN works well in some conditions when it is combined w/ Beta-lactimase abx. My daughter's prophylaxis was a macrolide-not beta-lactimase, so maybe its time for a switch.

It is encouraging to hear your personal story of success with LDN, and I thank you for sharing it.

[Lady]

What dosage do you give her? You give it at bedtime with a glass of water to follow? Many do it that way with the LDN, mix their own. It has to be refrigerated once you mix it. I guess you know that.

I guess your daughter's doctor has seen the double blind clinical trials on LDN and Autism.

Here is more info. There is so much to read on Pub Med and oral Low Dose Naltrexone and autism for children and young adults.

http://www.ncbi.nlm.nih.gov/pubmed/19393386?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed

[peglem]

What dosage do you give her? You give it at bedtime with a glass of water to follow? Many do it that way with the LDN, mix their own. It has to be refrigerated once you mix it. I guess you know that.

I guess your daughter's doctor has seen the double blind clinical trials on LDN and Autism.

Here is more info. There is so much to read on Pub Med and oral Low Dose Naltrexone and autism for children and young adults.

http://www.ncbi.nlm.nih.gov/pubmed/19393386?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed

Actually, I don't think her doc. has seen those studies...I brought the idea up to her...she took a few minutes to check it out online while we were in her office and agreed to let us try it. As a psychiatrist, I think she is familiar with the drug's on label usage and its safety profile. On follow up, she told us that after we told her about it, she is also trying it out with another patient, so she must have done a little more looking after we left. She is a bit unusual, I think, for a psychiatrist.

Thanks for the Pubmed link- I had to smile when it went through the list of all the tried and failed pharmaceuticals. Its like it was written about my daughter! I will print it out and give it to my daughter's psych the next time we see her. She'll like that!

Her dosage is 4mg/day, and yes, at bedtime.

Thanks again. So nice to have someone to discuss this with. There's a yahoo group, but that group is not my cup of tea.