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My friend wants me to try this because I'm completely out of options, literally. However, he's getting side effects from it. People with M.E. / CFS tend to be SO sensitive to medication and supplements and vitamins, at tiny doses we seem to be getting overdose and everything I've ever tried has made me incredibly sick, so I'm scared to try. He is doing one drop a day and said it's making him extremely lethargic and lately he's had crushing depression he attributes to it. So I am worried about a reaction to the stuff, but have no other options.

 

You are properly addressing any methylation difficulties and using detox strategies, right?

 

No. I have no idea how to do any of that. I can't read, except for small bits on forums. I do not understand the methylation stuff and my brain cannot do any reading/ research and it seems highly complex and complicated. I have extreme fatigue, mostly mental, excessive daytime sleepiness, it's hard for me to read stuff on this forum and process it much less a huge book and me with no scientific background. I'm also tired of trying things and don't want to do any more, the cannaboid stuff seemed like a last resort for me.

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I haven't been here for a while, but wanted to share that yesterday (yes, only yesterday) we made some progress. DS15 who suffers with severe OCD, is homebound, wont bathe in a shower or change clothi

Update. DS went out last Thursday. Walked to his friend's house and the mother vetoed the subway (ahh, the irony). So I drove them and they popped out of the car and walked around for a couple of hour

Snake oil, hemp oil, who cares as long as it works!

 

 

My friend wants me to try this because I'm completely out of options, literally. However, he's getting side effects from it. People with M.E. / CFS tend to be SO sensitive to medication and supplements and vitamins, at tiny doses we seem to be getting overdose and everything I've ever tried has made me incredibly sick, so I'm scared to try. He is doing one drop a day and said it's making him extremely lethargic and lately he's had crushing depression he attributes to it. So I am worried about a reaction to the stuff, but have no other options.

 

You are properly addressing any methylation difficulties and using detox strategies, right?

 

No. I have no idea how to do any of that. I can't read, except for small bits on forums. I do not understand the methylation stuff and my brain cannot do any reading/ research and it seems highly complex and complicated. I have extreme fatigue, mostly mental, excessive daytime sleepiness, it's hard for me to read stuff on this forum and process it much less a huge book and me with no scientific background. I'm also tired of trying things and don't want to do any more, the cannaboid stuff seemed like a last resort for me.

 

 

Ophelia - you may be interested in this post on MDJunction:

 

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/11109470-importance-of-focusing-on-the-immune-system-not-the-bugs

 

I will not bug you anymore. You have truley been through a lot. You haven't run out of options, perhaps only mainstream ones.

Edited by rowingmom
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On amazon, the Cibdex 2oz 500mg bottle price fluctuates between a sale price of 99.00 to the normal price 160.00 (I have amazon prime so my prices may be slightly different if you do not).

 

Mayzoo -- Just FYI, you might want to read some of the review of the Cibdex product before you purchase. Or maybe you already have, and your experiences has been a good one (sorry, didn't go back and read all the previous posts). When I was looking into CBD oil, this one did not get a lot of good reviews for efficacy, even at hefty doses. :(

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I read the reviews off a CFS/ME forum, and everyone on there was thrilled with it. We are trying a bottle of it now, and it is going quite well. I have seen no difference between it and the bluebird product. Thanks for your concern :).

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After reading the reviews on Amazon, one person gave it a 1 star because he sated he had an allergic reaction, another because it did not cure their leukemia, another tried it for severe back pain and felt for the price it was not as helpful as he wanted, another because it did not work as well as cannabis for his anxiety, and the last person is upset because of the strength it comes in vs the price (same as the others I have researched). The two star person also was looking for severe pain relief, and the three star person wanted it to cure their cancer.

 

We did not have any cannabis experience, so no let down comparison there. We did not have unrealistic expectations such as curing cancer or easing debilitating pain. We have mild to moderate anxiety and inflammation issues. So far it has worked just as effectively as bluebird's bottle did.

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Well I think I finally figured out why the CBD wasn't helping my daughter. At first I thought it was a herx so I dropped back and started very slowly and was working up VERY slowly. I wasn't seeing anything bad but nothing good either. Then as I got up to around 8 drops I started seeing negative again. About that time I read that the CBD has some sulfa properities to it. This would explain so much for my daughter. She can not tolerated any type of sulfa and even sulfa antibiotics make her completely nuts. So I stopped it and she went back to baseline in a couple of days. I guess we are out as candidates for CBD oil. I was really hoping this was going to work for us. Back to expermenting with essential oils.

 

Dedee

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After reading the reviews on Amazon, one person gave it a 1 star because he sated he had an allergic reaction, another because it did not cure their leukemia, another tried it for severe back pain and felt for the price it was not as helpful as he wanted, another because it did not work as well as cannabis for his anxiety, and the last person is upset because of the strength it comes in vs the price (same as the others I have researched). The two star person also was looking for severe pain relief, and the three star person wanted it to cure their cancer.

 

We did not have any cannabis experience, so no let down comparison there. We did not have unrealistic expectations such as curing cancer or easing debilitating pain. We have mild to moderate anxiety and inflammation issues. So far it has worked just as effectively as bluebird's bottle did.

 

Thanks Mayzoo! Always good to hear first-hand experience. I don't have a dog in the fight . . . just noticed some less-than-stellar notes, and wondered if it was by virtue of the brand/quality. Glad your DD is doing so well with it.

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So we tried Suprax to get a better handle on the remaining issues. DS16 did NOT do well, prob a herx/die off, but he wont do any detox stuff so it makes things complicated. We stopped Monday and today he said he's feeling a little better. The CBD capsule is the first one he takes, he calls it magic. We are doing 30 drops, twice a day. This bump in the road was hard on all of us and we will be pursuing a more integrative approach to deal with the Bartonella (BLO), such as adding Thisyln, Sidaacuta and Hawthorne to Japanese knotweed and Reishe.

 

I have been giving it to DS13 as well and he no longer has any trouble going to sleep (used to be a huge issue).

 

T.Anna

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So we tried Suprax to get a better handle on the remaining issues. DS16 did NOT do well, prob a herx/die off, but he wont do any detox stuff so it makes things complicated. We stopped Monday and today he said he's feeling a little better. The CBD capsule is the first one he takes, he calls it magic. We are doing 30 drops, twice a day. This bump in the road was hard on all of us and we will be pursuing a more integrative approach to deal with the Bartonella (BLO), such as adding Thisyln, Sidaacuta and Hawthorne to Japanese knotweed and Reishe.

 

I have been giving it to DS13 as well and he no longer has any trouble going to sleep (used to be a huge issue).

 

T.Anna

T.Anna

What time are you administering the evening dose that helps with sleep?

We began CBD exactly one week ago and have seen far better results with this than we have with any other thing we've done. And my ds 72lbs is only at 7 drops once a day so there's a lot of room for play. I'm considering a second daily dose.

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Pandasphilly, I give one dose in the am (with all the other pills/supps) and one in the pm (around 10).

 

We also put them in caps (30 drops in a 00 size, but they leak, so now I will try 2x 15 drops).

 

Dedee, they have a new "CBD Complete" that may be better, they said they reformulated so that it is more agreeable to autistic children (cannot remember why).

 

T.Anna

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