TOPIC:

I'm interested in this CBD oil you guys are talking about. Doing a bit of google searching leaves me with a ton of places trying to sell it and no idea about what would be a good, legitimate source. Any thoughts on acquiring it? I gather that hemp oil is usually hemp seed oil and not the same cannabidiol oil which needs to come from the leaves.

Really interesting information about using this for autoimmune conditions and the wide variety of pathways this may effect. I'm up for trying it!

I follow a woman on FB who is into holistic medicine (Erin Elizabeth). Her husband is Dr. Mercola, don't know if you've ever heard of him. Anyway, she uses and trusts this brand (below). I haven't tried it yet because it's expensive, but I do trust her opinion.

www.solcbd.com/products/sol-cbd-cinnamint-flavor?affiliate=193&variant=6722628485#

Sandi, I really should have started a new thread. Is it possible for you to move the last few entries to a new topic (CBD oil)?

Okay, now you are challenging me!

I wasn't sure if I could do it. It appears that I could!
I tried it one other time and deleted whole threads.

Thank you, Sandi. I never doubted you could do it!
Now, here's your reward:

Elsevier
Autoimmunity Reviews Volume 15, Issue 6, June 2016, Pages 513-528
Cannabinoids and autoimmune diseases: A systematic review
Valeria Katchan; Paula David; Yehuda Shoenfeld
doi.org/10.1016/j.autrev.2016.02.008
Abstract
Cannabinoids have shown to have a variety effects on body systems. Through CB1 and CB2 receptors, amongst other, they exert an effect by modulating neurotransmitter and cytokine release. Current research in the role of cannabinoids in the immune system shows that they possess immunosuppressive properties. They can inhibit proliferation of leucocytes, induce apoptosis of T cells and macrophages and reduce secretion of pro-inflammatory cytokines. In mice models, they are effective in reducing inflammation in arthritis, multiple sclerosis, have a positive effect on neuropathic pain and in type 1 diabetes mellitus. They are effective as treatment for fibromyalgia and have shown to have anti-fibrotic effect in scleroderma. Studies in human models are scarce and not conclusive and more research is required in this field. Cannabinoids can be therefore promising immunosuppressive and anti-fibrotic agents in the therapy of autoimmune disorders.

I find the potential for effectiveness with arthritis and multiple sclerosis to be promising, as both of these autoimmune diseases -- in addition to ITP -- respond to Rituxan. There is also some evidence that scleroderma responds to Rituxan.

Thanks for the prize. I've been reading a lot about cannabis in the last year or so. It does a lot of good things in it's pure form. I wouldn't go near street marijuana; too many synthetic substances added. I recently had a medical marijuana place open near me and I'm seriously considering it. I wouldn't smoke it, but I would eat it. It's not addictive and would sure beat the addictive meds that I'm on now. It might kill two birds with one stone.

Sandi wrote:

I follow a woman on FB who is into holistic medicine (Erin Elizabeth). Her husband is Dr. Mercola, don't know if you've ever heard of him. Anyway, she uses and trusts this brand (below). I haven't tried it yet because it's expensive, but I do trust her opinion.

www.solcbd.com/products/sol-cbd-cinnamint-flavor?affiliate=193&variant=6722628485#

Thanks Sandi! (Impressive thread reorganizing, by the way. I should have thought to move my question to a new thread, lol!)
I had heard an interview with Dr. Joseph Mercola on a podcast (probably the Model Health Show) and have started to do a bit of dabbling in some of these other sources of medical information. It's certainly helpful that I had been helping my oldest son prep for his SAT Biology Subject Test because there's a lot of biochemical discussion with some of these topics!

That link looks good and I'm going to give it a try. Hopefully it does something for me and I can eventually decrease my Promacta dosage. Kinda funny to get something related to cannabis though. I want NO part of anything producing a "high," but it sounds like there is no THC component and CBD can be isolated so I'm willing to experiment! I'll update my thread whenever I get it if there is any noticeable change in anything, platelet related or otherwise.

Yeah, I haven't heard that CBD oil produces any kind of a high. I'm only thinking about medical marijuana because I'm already on opioids and I think the alternative might be better. If I can get the same result without the addiction, I'd be better off. I'm already used to living with a high but that's the price of pain.

Sandi wrote:

Yeah, I haven't heard that CBD oil produces any kind of a high. I'm only thinking about medical marijuana because I'm already on opioids and I think the alternative might be better. If I can get the same result without the addiction, I'd be better off. I'm already used to living with a high but that's the price of pain.

I hear you! Definitely better to switch from opioids if you can find something else that can help you manage your pain. Certainly worth a try. I placed my order so we'll see when it gets here!

Hi All,
I reached out to the Sol people and asked it there is a good one for ITP and this was her response. I found it a bit generic but thought I"d share it with you in case it is helpful. I have not had time to look at the book or get on facebook yet. I am definitely going to try some CBD, it should not get me high just hopefully impact the immune system and get me well!
Please let us know if you find a CDB that helps with your ITP.
Best,
Cindy

Note from Sol.....
Lorena <tickets@solcbd.uservoice.com>
Hello Cindy,
Thank you for reaching out.
When it comes to results with CBD, it's really hard to predict that as we are all unique, but I would suggest giving it a shot.
You have nothing to lose as we offer 60-day money back guarantee and hopefully a lot to gain. Our main goal is your success story!

I would highly suggest to download our "The Truth About CBD" book as it will provide you with most important info on CBD you need. You can find it directly on www.solcbd.com

I would also suggest joining our private FB group and post some questions there and see if some of our current customers who are dealing with similar situation like you can provide feedback on the product they use, dosage as well as results - www.facebook.com/groups/1670641026527541/

When it comes to figuring out which product would be best, I suggest simply trying one of our oil tinctures or water soluble CBD product (liposomal formula).

Generally, we understand that water solubility impacts a pathway in the body that will target joints issues best. It also doesn't require breakdown by the liver which means the CBD is more absorbed and is quickly accessible by the body.

Oil solubility impacts fatty tissues more which means it's best fit for brain health and neurological issues.

Since we have cannabinoid receptors throughout the body both water soluble and oil products will give your body the building blocks it needs to function properly.
The best way to know which one works best for you is to take the information above and determine which product to start with. We then suggest trying a variation just to see if it impacts you better or worse.
We must become gurus of our own biology and that requires trial and error.
Also, here's 10% off your first order - simply use "onetimeoffer" as a discount code during checkout.
Hope this helps clear some things.
Please feel free to reach out if you have any further questions.
Warm Regards,
Lorena

Hi, I just joined this site today. My mom was diagnosed over 30 years ago with ITP. She gets monthly infusions of WinRho to keep her platelets up. She has the type that her antibodies eat her good and bad platelets. The WinRho hides the good platelets for 28 days. They took her spleen out over 20 years ago and it did not good.
We were looking to start her on CBD Oil for chronic pain. She has had 2 spinal fusion in the last 2 years and lives in pain. She has tried many pain meds with no real relief. Any advise would be greatly appreciated.

I have not tried CBD yet, but have been reading up on it and went to a presentation. If you want to learn about the different health benefits of CBD, echoconnection.org is a great website. The brand that has been recommended to me as being the "best" quality CBD and value is Kannaway. The CBD salve is supposed to be fantastic for skin and aches. I have friends that have had great success with their products. I have been too chicken to try without researching first, but I thought I would pass this information on for those of you trying to make an informed decision about CBD oil.

I finally bought some CBD oil. My pain management specialist mentioned it the other day and told me that my local health food store sells it. We'll see!

I also bought some Collagen. I thought it might help my thin steroid skin. I started taking the Glutathione too. My list of vitamins and supplements just keeps growing. Pretty soon I won't have to bother eating food.

I take: Vitamin C, Vitamin D, Vitamin E, B-12, K-2, Magnesium, Probiotics, Glutathione, Alpha Lipoic Acid, Selenium, Collagen, D-Ribose, and MSM.

Diagnosed with ITP last September. Hematologist had me on large doses of Prednezone in bursts. Platelets shot up and came down. Then slowly weaning of the ugly stuff and platelets dropping. He is insisting on a splenectomy but as a Whole Food Plant Based eater I am looking into holistic solutions. In my search I have discovered this website thesacredplant.com/ They just completed a 7 day free webinar that was VERY informative. However, not one mention of ITP so the search continues.
I do know CBD does not make you high. THC does. Most "protocols" call for a combination of both. I live in New Hampshire which is only a medical marijuana state with very strict guidelines so being able to get treatment is going to be a challenge. I would like to connect with others who are on this particular search.
I am also looking for a good physician in the Boston area for a "second opinion" and hopefully more understanding instead of just rote answers.

Hi jhend1125,

You definitely sound like you need a new hematologist. With the treatment options available today you need to run away from anyone who insists on a splenectomy after only trying Prednisone. That is not the current treatment protocol for ITP and only hematologists with very outdated information would suggest going straight to splenectomy after steroids. Read about treatment options on this website and I hope you can find a new doctor.

On the topic of CBD oil, I tried that for a few months (yes, the one I tried had no THC and there was no high) and it didn't do anything for my platelets, but your experience may be different. It's worth a try

Thanks for the quick reply. I have been feeling like I'm fighting an uphill battle all alone but now I have a community and resources. My solution with my doctor at the moment is just to fight him tooth and nail. He is not happy with me. I am now also seeing an Osteopath who is much more holistic but she is just running tests and has no "answers" yet. Meantime the platelets drop and I am frightened. My level now is at 56 and after reading some of the posts on this site I think I have a little time to research my next option.
I was cured of cancer in 1996 and am having a hard time wrapping my head around having something that is "incurable".
Thanks again
Joan

Joan.
It sounds to me like you need a haemo who is up to date with current treatments..

A level of 56 is just great! Modern hematologists will just recommend watching your counts with periodic blood work if your platelet count is 30 or above. While not in the "normal" range, anything above 30 is considered safe for daily living. Treatment is only needed if your numbers stay below 30 or you have significant symptoms and bleeding. If I had counts in the 50s I would be taking no medication at all!

I wouldn't worry too much about "incurable." Tons of patients have a brief bout with low counts, then achieve a remission and may never have another low platelet count again. No one can tell you how long you will have low counts or when/if they will resolve. Definitely don't go into this thinking in terms of "incurable." Even if your counts stay in the 50s for the rest of your life, you could be living with no treatment of any kind, so it really doesn't matter that you aren't "cured." It really wouldn't affect your life much at all. I'm a relatively rare case in that I've had ITP most of my life, and even being a refractory patient, it honestly doesn't affect my life much at all other than periodic management of medication/symptoms and going in for lab tests. That's really about it. And I'm a tough case!

I know it can seem overwhelming in the beginning, but compared to beating cancer, ITP is a walk in the park! If your hematologist is pushing you and fighting with you and you have a count of 56, I reiterate that it sounds like you have a HORRIBLE doctor and need a different one ASAP. He should be recommending that you come in once a month or once every few months to check your levels and that is it. Pushing you to treat (with surgery no less!!) when you have pretty good numbers is really insane. Good luck as you learn more and research. Asking questions here is a good way to address your concerns.

Thank you both for confirming my feelings about my Hemo......Problem is in Concord, NH there aren't many of them around. I am going to start looking between here and Boston (1 hr away).
And your support is helping to lower my panic level. In looking at my "next options" it seems Promacta might be my best bet but the cost is prohibitive for a 72 year old living on Social Security. and trying to make savings last another 20 years

Is CBD oil supposed to help increase platelets?? I know I tried it [no THC] for nerve pain and it did not help - however I don't think I bought a good brand, didn't research 1st, saw it at a Farmer's Market and bought it, got home & looked up the company and it seemed legit so tried it. I won't buy like that again nor will I buy it at a health food store or a grocery store or the like. When I try it for my nerve pain again I will go to Charlotte's Web and buy from there [nope, I don't work for them, I do not get a kick-back - go to the site & you will see why I feel it is a very reputable company, not to mention that it is grown here nothing from other countries or unknown locations - unfortunately it is not cheap]. If you check out the whole site they say they can legally ship to all States].

Congratulations on beating the C - good for you!! You beat that then ITP is a walk in the park
"...and trying to make savings last another 20 years " you have a wonderful attitude, love it!!

From what I am reading here it appears CBD does not increase platelets. From my research elsewhere I have learned usually you need a combiniation of THC and CBD for most things to work BUT you must be careful about the ratio. All research has emphasised to be very, very careful about where you get your "MM" and to be sure it is lab tested. If I was to buy CBD I would find a reputable place on the Internet and order from them. I don't trust much of what you can buy over the counter. I just watched a webinar from the site "Scared Plant" and it was very informative. No where did they mention ITP. I am still hoping to find something to decrease inflammation and my autoimmune trigger whatever that might be. It will be a long process if it ever happens.

Do check out Charlotte's Web then!!

Jhend1125, I went to the PDSA ITP Conference in Cleveland last weekend, and one of PDSA's medical advisors practices in Boston-- Dr. David Kuter at Massachusetts General Hospital. I got a very good impression of him. Hope this may be helpful, and good luck with your ITP journey!

Thank you Oliver. I have just found Dr. Kutner and he will be my next hematologist if things don't go well from now on. I have decided, upon reading posts on this group, not to have a splenectomy. At this moment I am slowly coming off prednisone and am now at 2.5 mg for 2 weeks. Count is 56, no bruising or bleeding. I am going on one day at a time.

jhend1125 wrote:

Thank you Oliver. I have just found Dr. Kutner and he will be my next hematologist if things don't go well from now on. I have decided, upon reading posts on this group, not to have a splenectomy. At this moment I am slowly coming off prednisone and am now at 2.5 mg for 2 weeks. Count is 56, no bruising or bleeding. I am going on one day at a time.

Wise words! Good for you!

Ordered Lowryder Autoflower infused gummy bears for first time. Never used CBD products before. Suffer from MS and muscle spasticity.
Product was delivered within 2 days.
Find that it helps with relaxation to aid sleep if taken late at night and did help as muscle relaxant but wouldn’t use as replacement for muscle relaxants

Cannabeme wrote:

Ordered Lowryder Autoflower infused gummy bears for first time. Never used CBD products before. Suffer from MS and muscle spasticity.
Product was delivered within 2 days.
Find that it helps with relaxation to aid sleep if taken late at night and did help as muscle relaxant but wouldn’t use as replacement for muscle relaxants

Cannabeme, have you tried Vitamin D? Here is an article on the connection to MS.
www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/vitamin-d-and-ms/faq-20058258

Further. Here is a study suggesting Vitamin D helps reduce one's negative auto-immune reactions to EBV.
"Vitamin D and the anti-viral state"
www.ncbi.nlm.nih.gov/pmc/articles/PMC3308600/
"
... vitamin D modulates the immune response to EBV and suppresses activation of auto-reactive T cells that may contribute to MS pathology.
"
I don't think it is a stretch to think that Vitamin D is helpful in some forms of ITP for the same auto immune reason - the EBV connection. As with MS, perhaps reducing the odds of one's ITP getting worse.