CliniCrowd has published initial results

[MichalKahan]

For those of you that have joined the clinicrowd.info/ Parkinson's and Mannitol registry - we are happy to inform that we have released preliminary initial results. If you have filled out at least one follow up registry, after the initial registry, you will be able to go into you profile page and see preliminary results.

For more details: mailchi.mp/edc3bbf7e8c0/par...

Those that did not join, you are more than welcome to join the registry, even if you decide not to try Mannitol. The registry is open also as a disease management platform to track your medication and symptoms

[parkie13]

I'm not able to get into the site. If you read the results could you please share thank you

[alexask in reply to parkie13]

Me too. I am pretty convinced that Mannitol offers more hope of stopping the prevention of parkinson's than any other supplement ( and/or combined with other supplements). Unfortunately I am also pretty convinced that no-one will ever know this thanks to the clinicrowd being quite possibly the world's worst website to use. So frustrating!

[Islandhappy]

Been on mannitol for 6 months. Just got an email from CC in Hebrew...

[1TonyS]

I can easily get on the site by logging in. The report however tells me nothing that is useful. It just describes the condition, sex, country and disability of the participants from each initial report in the registry. There are numerous requests to fill in monthly updates. I have done this every month for 6 months but apparently most people don't so they cannot tell what works for what condition. This is very frustrating.

I don't know why

a, they don't thank you for submitting follow up reports

b, they don't prompt by email for the next update until received

c, they don't tell you that yours is the 22,789th update received.

d, they don't show any simple observation that 2 or more people have improved in some way that might encourage further use. After 10 years my sense of smell has improved dramatically, has no one else found this or is it a placebo effect?

e, if they want to get a result, show the conditions for some beneficial results, now!

f, we did this, mostly hidden from neurologists, on the basis of a fantastic reported improvement, surely at least one other person has improved, or thousands?

Please do better Clinicrowd

[bassofspades]

The results report contains no useful information about the efficacy of mannitol on pd that i could find. Just demographics. Did i overlook it? 10 months on the stuff myself and my result is a clean colon! I saw crippled fruit flies taking mannitol in the video and the result was they could then climb up a test tube. Two guys got their sense of smell back and softened their facial expressions . I expected more from this stuff. Theoretically mannitol dissolves sticky protien. I guess they figured it might clean a-synuclean clumps from brains and csf. With all of the symptoms we have i dont really give a crap about my sense of smell and resting bitch face, compared to the other ones, like movement, feeling joy, brain fog, etc. I get better results with pqq, resveratrol, amino acids and strong coffee.

[alexask in reply to bassofspades]

Well it doesn't work for everyone, but I believe definitely helps me.

[Astra7 in reply to alexask]

Which symptoms has it helped with? Also how much do you take?

I am too afraid of digestive disturbances to try, but if it works I'll do it.

[alexask in reply to Astra7]

Reduced all my symptoms - check my profile. Specifically tremor, improved sleep, allows me to eat carbs.

[Astra7 in reply to alexask]

Do you plan to get a diagnosis?

What do you mean about carbs? Did you find they made you worse? Straight away or the next day or so?

I am convinced this PD is related to sugar metabolism which fits in with the gut bacteria theory, the mannitol and the exenatide results.

[alexask in reply to Astra7]

I will get a diagnosis when my symptoms become severe enough to convince a GP that I have this and I conclude I need meds.

It's basically sugar, I have a very soft spot for cakes, which I never buy, but when I am at some celebration or someone from the office buys some I am straight in there. That evening my tremor and sleep are likely much worse.

Conversely if I exercise sleep and tremor are much improved.

Sugar metabolism theory sounds most plausible.

[bassofspades in reply to alexask]

Alexask this is true, for all treatments. Sorry for venting. Im a little frustrated.

[Astra7 in reply to bassofspades]

Love the resting bitch face!!

[CliniCrowd]

Hi, this is Noy from CliniCrowd, I am in charge of customer support.

Regarding the initial reports, first I would like anyone that has problems accessing our Web site to send an email to [e-mail] and I'll be happy to assist.

Second, we understand the frustration of those that have been filling out registries for a while; I can assure you that now that we launched the secured zone with the community initial results, our first priority right after is the personal results. Please follow our blog (clinicrowd.info/introduction/) for an explanation on what you will be able to see in the personal secured zone.

[rhenry45]

It did nothing for me. I don't think it can cross the blood brain barrier so it actually cannot work. Any positive results are likely placebo effect.

[CliniCrowd in reply to rhenry45]

The research suggests that Mannitol might prevent the deterioration of Parkinson's.

So even if you didn't feel any improvement in your symptoms, it doesn't necessary mean that Mannitol did nothing.

Regarding the BBB, you can read the scientific-base data here: clinicrowd.info/parkinsons/

[rhenry45]

An IV may work but that is totally different than taking internally. Gut bacteria will break it down and none will get into the blood stream.