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BlsdMama

On the top of medical oddities.... CBD

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Who knew?  And seriously, why are they not pushing it more?

So...  ALS, my muscles are still spastic right now, i.e., super tight.  So I get Botox 3 times a year and we were considering every three months.  Eventually, as muscles deteriorate, spasticity is less an issue and the botox really is compromising.  Because ALS patients can't rebuild muscle cells and botox destroys some muscle cells, it's a mixed bag and not exactly recommended for ALS patients.  Still, Mayo is doing it for me.

Last bill to insurance in November? $11k and change.

So, we figured, between the expense which is covered by my insurance, and the risk factors, we'd ask about cannabidiol.  Both doctors at the University and at Mayo recommended it.  I opted to go with Charlotte's Web after a whole lotta research.  

WHY is this not touted more for spasticity - like in MS patients!?  I was really hesitant.  My costs are about $150/month.  My botox was already beginning to wear off a little.  The difference is truly remarkable!  I honestly wouldn't have believed I'd ever be a convert.  I can see the headlines now, lol.  In all seriousness, I have contacted my local lobby group and asked how I can be a better advocate for the state.  It has no psychoactive effect that I can tell at all.  Actually I can tell pretty much nothing except zero pain in the AM upon waking and stretching.  But that in and of itself is HUGE.  

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 It might not be long, before CBD becomes a common treatment for ALS.
Their are currently quite a lot of studies going on, into CBD and ALS.
Basically what CBD does, is to reduce the rate of firing of electrical signals. By the Cells.
Which is how it is reduces Seizures.
It is a logical conclusion, that it would help reduce muscle contraction in ALS.
Some studies, have shown that it can also reduce the progression of ALS.

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Encouraging news for you!
 

I do think CBD is being used commonly now, though. It’s available like everywhere. My DO recommend it for weird RA type pain I have in my hands and feet. I'm planning to ask my primary next time I see her and expect she will be favorable.
 

We were recently in Tulsa and couldn’t believe how many medical pot pharmacies there are. It seemed like there was at least one on every corner. Now, I know not everyone uses them legitimately (I *think* in OK only medical uses are legal), but still. It’s legal here too—medical and recreation—and it seems like the pharmacies are popping up everywhere. Seems like an encouraging step forward, imo.

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This just reminded me...in high school (late ‘80s), a boyfriends mom and stepdad grew a couple pot plants in the backyard, mixed in with their tomatoes (totally not legal but also totally not uncommon in my northern CA community at the time). They had a young daughter with Down’s syndrome, and because their faith didn’t “allow” for traditional treatment they did something with the pot to help her. I don’t recall the details, but I’m thinking it’s been used in some form or another for medical purposes for a long time. Step dad is Mexican, I wonder if there was a medical use he knew about that wasn’t yet embraced here? Just musing.

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At least in my circles, CBD for spasticity is helpful for some and not others.  It’s not as consistently effective as botox or baclofen, but for the ones who see an effect it seems to be quite helpful. 

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7 hours ago, BlsdMama said:

Who knew?  And seriously, why are they not pushing it more?

So...  ALS, my muscles are still spastic right now, i.e., super tight.  So I get Botox 3 times a year and we were considering every three months.  Eventually, as muscles deteriorate, spasticity is less an issue and the botox really is compromising.  Because ALS patients can't rebuild muscle cells and botox destroys some muscle cells, it's a mixed bag and not exactly recommended for ALS patients.  Still, Mayo is doing it for me.

Last bill to insurance in November? $11k and change.

So, we figured, between the expense which is covered by my insurance, and the risk factors, we'd ask about cannabidiol.  Both doctors at the University and at Mayo recommended it.  I opted to go with Charlotte's Web after a whole lotta research.  

WHY is this not touted more for spasticity - like in MS patients!?  I was really hesitant.  My costs are about $150/month.  My botox was already beginning to wear off a little.  The difference is truly remarkable!  I honestly wouldn't have believed I'd ever be a convert.  I can see the headlines now, lol.  In all seriousness, I have contacted my local lobby group and asked how I can be a better advocate for the state.  It has no psychoactive effect that I can tell at all.  Actually I can tell pretty much nothing except zero pain in the AM upon waking and stretching.  But that in and of itself is HUGE.  

 

I’m glad it has given you some relief.  Zero pain in AM could make your whole day start better!

And, Thanks! for posting this.  

I’ve wondered if it could do anything for some of my own autoimmunity symptoms.  I think this thread will be the catalyst to give it a try.

 

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My sister suffers from Rheumatoid Arthritis and some nights she would be awake all night with the pain.

I finally got her to try some marijuana and the relief has been immense for her. She says that knowing she will be going to bed and not have to deal with such pain is a miracle for her. 

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@Pen, check this out:

https://www.israel21c.org/israeli-researcher-develops-molecule-to-block-lupus/

It’s only been tested on mice so far, but is looking promising for other autoimmune diseases. Maybe @geodob has a better understanding of this?

Also, did you have melanoma? That site has some interesting articles about melanoma, too. In their Health section.

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2 hours ago, Angie in VA said:

So glad you have found any relief at all!

Here is where I first I heard about Charlotte's Web. 


Angie - thank you so much for sharing that! I'd not seen it and the stigma around CBD is incredible.  Here in Iowa it is only legal through the dispensaries.  I have a patient CBD card through the state ($125 for me and DH - $100 for patient and $25 for caregiver, for the privilege of having the official card, thank you very much) but that only allows for the purchase of the specific types they allow in the dispensaries.  CW is whole plant and meant specifically for virtually no CBD.  It's ridiculous that our government entities seek to work against monopolies and creates them all in one breath. For the life of me, I can find out almost nil about the plants and the extraction methods.  
 

4 hours ago, Pen said:

 

I’m glad it has given you some relief.  Zero pain in AM could make your whole day start better!

And, Thanks! for posting this.  

I’ve wondered if it could do anything for some of my own autoimmunity symptoms.  I think this thread will be the catalyst to give it a try.

 

 

It might.  And if you're looking for anything else to consider - turmeric.  There is a product called Leap2BFit that has been instrumental in some people's lives.  I take turmeric, but Leap2BFit saves me a lot as far as supplementation goes - just an FYI.  Both CBD and turmeric greatly reduce inflammation.

5 hours ago, MEmama said:

Encouraging news for you!
 

I do think CBD is being used commonly now, though. It’s available like everywhere. My DO recommend it for weird RA type pain I have in my hands and feet. I'm planning to ask my primary next time I see her and expect she will be favorable.
 

We were recently in Tulsa and couldn’t believe how many medical pot pharmacies there are. It seemed like there was at least one on every corner. Now, I know not everyone uses them legitimately (I *think* in OK only medical uses are legal), but still. It’s legal here too—medical and recreation—and it seems like the pharmacies are popping up everywhere. Seems like an encouraging step forward, imo.


Maybe, I can't decide how I feel about it!  - I think, like in the TED talk, we are seeing that surge of "back pain," KWIM, and I resent (?) to some degree, the implication that some make that it's a dime a dozen.  The "good" stuff is expensive and it's hard to see dollar stores making a buck off marketing their "CBD" lotion to the masses and knowing they're really proliferating misinformation.  Because, Jane, who tries this cool hemp lotion thinks she just used legit CBD oil and proclaims it didn't work for her arthritis... well, you can see where I'm going with this.  

At the same time, I live in a city and state where they literally shut down some of these little shops carrying harmless CBD oil because they aren't dispensaries and are technically illegal - regardless the CBD is low and the THC is nonexistent.  So, it's a little scary to be vocal about it too, kwim?  But maybe that's a good thing - to be outside of the norm.  It's the reach across the aisle ideology and maybe I should be the poster child for CBD because it's the opposite one would expect.  

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https://www.texasmonthly.com/articles/put-to-the-test/
 

This is a few years old now, but I thought it was a fascinating article when I read it.  I think it mentions Charlotte’s Web.  
 

My friend here’s husband was offered something marijuana-related when he was in late-stage cancer, and she was offended by it.  He tried it once though, but my friend felt a little like while she wasn’t there, other people (medical) brought it up to him.  I don’t know all the details but she didn’t like that it was offered.  She didn’t hate that it was offered either, she wasn’t angry, but she didn’t like it and she was offended.  

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Also my mom told me she thinks the cards are $250 in Oklahoma (though she might have just said “a large number”).  There are dispensaries all over her town also.  She will say she doesn’t know how they can stay in business, and maybe some will go out after a couple of years.

I agree about the regulation/monopoly.  It seems like a strange system to put in place.  

Edited by Lecka

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In Georgia, medical marijuana was finally legalized but they didn't legalize a way to get the marijuana into the state.  It has been a huge mess.   

I've posted before that my mother was one of just a handful in the whole country that had legal medical THC in the 1980s (in pill form).  She had it during chemo, and made a huge difference for her.   I don't even drink but I am a huge believer in medical cannabis and really don't even have a problem with recreational at this point.    A year or so ago I had pretty significant chronic pain following surgery, a post-surgical complication, and since I won't really take opioids either (addiction is very strong in my family), I did finally try CBD/THC oil when I was in a legal state.  I didn't notice a huge difference but at least it helped me get through the worst part and kept me off the Rx meds.  

 

 

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12 hours ago, geodob said:

 It might not be long, before CBD becomes a common treatment for ALS.
Their are currently quite a lot of studies going on, into CBD and ALS.
Basically what CBD does, is to reduce the rate of firing of electrical signals. By the Cells.
Which is how it is reduces Seizures.
It is a logical conclusion, that it would help reduce muscle contraction in ALS.
Some studies, have shown that it can also reduce the progression of ALS.

Is this also used for muscle issues in MS I wonder? I have a friend with MS and I'm sure she probably knows all about it if so, but may mention it just in case. 

We have CBD in the house, I totally forgot about it - DH was using it for anxiety but then stopped because he was worried about his new job and drug testing, even though it came with 3rd party lab results saying it had no THC, etc. With my SI joint stuff I hadn't even thought to try it, but maybe I will. I have a script for muscle relaxers but they give me a "hangover" effect in the morning if I take it to help me at night, and they make me too sleepy to take at any time other than night. I hate taking them, and I'm someone who usually enjoys medication more than I should, lol. I've been known to pout that recreational marijuana is going to be legal everywhere soon but no one will ever make recreational vicodin legal. (and I'm being tongue in cheek - I know that opiod addiction is a real problem and why it won't be a recreational drug - I just find it to be the most relaxing thing - way more than xanax, alcohol, etc - so I wish it was safer)

But anyway, next time the SI pain flares up I may try the CBD. (hoping I won't need to - started physical therapy this week and after an initial increase in pain, today has been so much better!)

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Does CBD cause sleepiness or anything like that with internal use?

 

I remembered that I have a salve that contains CBD which has been helpful massaged into painful joints and for my hands which often get painful (Raynaud's and perhaps some arthritis) and plantar fasciitis etc. But I am not certain that it is significantly more helpful than a salve from same company without the CBD. It’s from a company called Naturulz and version with CBD seems to be called ugli butter .  I am going to try it on painful areas this morning.  

 

Edited by Pen

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Reporting: 

Experimental procedure: I put the CBD containing salve on one painful area to compare with others without. 

Conclusion: It does help a lot.

I think I want to get antother jar of the nonCBD type to compare the two to each other. 

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CBD can cause drowsiness in some people.
Some companies that produce CBD products, also provide a 'Certificate of Analysis'?
These Certificates are random tests of their products, by an independent laboratory.   Which will identify whether their products contain what they state?
So that this is something to look for or ask about, when buying any CBD products.

Also their are various Extraction methods, including the use of alcohol, propane and CO2 (Dry Ice).
CO2 Dry Ice is a more expensive method, but is the best method of Extraction.
Another issue, is whether Whole Plant Extraction is used?
Their are over 100 different Cannabinoids in Cannabis.   Where research is ongoing into some of them, as they are being shown to have 'medical use'.  For example, some have been shown to have Anti-Inflammatory effects.  It has also been shown to prevent the onset of Cerebral Malaria. The Terpenes, which provide the smell and flavor of Cannabis.  Are also of interest, with different properties.
So that CBD products that have used 'Whole Plant Extraction'.  Can be more beneficial, as while the THC has been removed.  They can still contain many of the 100 different Cannabinoids, as well as the various Terpenes.

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