Naviaux, the ME/CFS Autism Connection and a Treatment Success - A New Website Opens

[Cort]

Syndrome A is a brand new website put together by a person with ME/CFS,Ehlers Danlos Syndrome and Autism. It's going to attempt to break down some silo's and do something I think is vitally needed - merge diseases such as ME/CFS, Autism, Ehlers-Danlos Syndrome, Mast Cell Activation Disorder & others together.

A deeply personal blog by Brooke starts off the website. For first time I felt I had a real sense of what it's like for a highly functioning person to have autism. Next, Brooke moves onto her ME/CFS which she developed when she was 16.

Then she makes a natural progression to Naviaux's autism/ME/CFS findings (she does both personal and science very well) and finally reports on an interesting and cheap treatment help she stumbled upon while researching multiple sclerosis (!)

The big bonus is the fantastic writing. Please check out and support Brooke's efforts to meld this group of diseases together

https://www.syndromea.org/2018/10/29/autism-and-chronic-fatigue-syndrome/

 

[Chris]

Sounds interesting, but have already found a serious caution: high dose Biotin improved her state, but...

https://www.uspharmacist.com/article/highdose-biotin-triples-relapse-rate-in-primaryprogressive-ms

 

[LouiseLouise]

Hello,

This is my article. Let me know if you would like me to answer any questions.

Thanks

 

[xcell]

Naviaux Suramin trial looks very interesting.
It prevents reverse transcriptase and therefore helps with HIV: http://www.animalresearch.info/de/m...azt-die-erste-medikamentose-therapie-fur-hiv/

If Suramin helps against Autism (and HIV). And HIV treatment helps against ME (and reduces the risk for getting MS). And Biotin helps against MS (and also against Autism).
What can we infer from that?

 

[Hip]

This is my article.

Very, very interesting about your high-dose biotin (100 mg twice daily) treatment, LouiseLouise.

Coincidentally, I recently put this on my list of treatments to try, after I read high-dose biotin can help myelin repair. I listed some sources of cheap biotin here. I am more motivated to try it now, after reading about your success with it for autism symptoms, anxiety and irritability.

I had pathologically high levels of irritability in my early years with ME/CFS, always having to bite my tongue to stop me from saying something nasty. My ME/CFS appeared after a viral brain infection. In my case, I found very low dose amisulpride effective for the irritability.


By the way, for anxiety, you might find this treatment that I discovered of interest:
Completely eliminated my severe anxiety symptoms with three supplements!

The type of generalized anxiety disorder (GAD) I had was a mental tension-type anxiety, which I think is the sort of anxiety often experienced in autism (there is also the worry-type GAD, which I did not have). My anti-anxiety treatment I think likely works by targeting the chronic brain inflammation which I suspect underlies GAD in many cases. Around 50% of people who try my anti-anxiety treatment say it works very well; but the other 50% say it does not work at all. It's all or nothing.


Have you considered positing this high-dose biotin treatment on an autism forum? Though you have to be careful: some years ago I posted about my anti-anxiety treatment on an autism forum, as I thought it might work for autism-type anxiety. I was just trying to help, but I got a bit of flak from some members of that forum, telling me just to leave autistic people alone, and stop implying that they are ill. I guess that is the neurodiversity movement you were talking about in your article. Others on that forum were welcoming though, and wanted to hear what I had to say.


By the way, you might be interested in this recent very speculative idea about how ME/CFS symptoms may arise in people with hypermobile EDS :
Could Ehlers-Danlos syndrome cause ME/CFS-like symptoms as a result of a Chiari malformation?

 

[Hip]

This is my article. Let me know if you would like me to answer any questions.

@LouiseLouise, have you looked into the dietary oxalic acid link to autism? I read that high levels of oxalic acid from your diet can affect certain biotin-dependent carboxylase enzymes, and one way to remedy that is taking very high doses of biotin, like you are taking.

So I wonder if the benefits you experience from high-dose biotin might derive from its ability to combat the ill effects of oxalic acid? If so, then reducing your dietary oxalic acid intake might lead to further benefits for you.

Some have claimed that a low oxalate diet improves autism.

 

[dreamydays]

I have tried high dose biotin, its available as 100mg capsules if you look around. I have very mild Asperger's , so I am on the spectrum, but its not noticeable from talking to me, but I do get very focussed. on my hobbies, unfortunately my only hobby now is working on improving my ME. The biotin didn't make any difference to me, I was hoping it might help my fibro, but all that happened was my nails grew quicker! It's had good results with MS, so I wouldn't put anyone off it. I don't have any expertise in Autism, but in 50 years our understanding of many conditions will be very different and even Autism will be understood in a completely different way. I am not sure that I will be around to see it unfortunately.