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Thread: Medical Marijuana and Stiff Person Syndrome

  1. #21
    Distinguished Community Member Sunshine's Avatar
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    Thanks for your quote and the compliment Rose.

    For people who are thinking about trying medical marijuana because they are in a state or country where it is legal, it is important to know that there is a great lack of research about dosing. This is because the governments did not allow any research. Israel is on the forefront of this. Europe is definitely ahead of America.

    Because there is such a little research, you are a little bit on your own in terms of selecting the company that you were going to work with to obtain your marijuana and the actual dose.

    In Florida, you go through a paperwork process in order to get a medical marijuana card. You have to visit with a certified marijuana doctor which is a Doctor Who has had special training in the use of medical marijuana. But remember, while the doctors knowledge is better than most, there is very little knowledge the doctor actually has.

    When you get your card in Florida, you then select a marijuana company to put in your first order. You can change companies it anytime. The doctor makes a recommendation to the state as to how much marijuana you can have in a given period of time and whether you will Vape it or put oil under your tongue, use a pill, edibles or other delivery systems.

    I chose Surterra as my company because I like their product and I liked how organized they were when I spoke with them. At anytime, I can purchase marijuana from another company because they all report to a central registry and they all know when you have used up your supply allowed by your doctor’s recommendation. The doctors are not allowed to call it a prescription. It is called a recommendation.

    I worked my way up to a one to one ratio of CBD to THC because I was afraid of getting high on this THC. I do not get high on the one to one ratio and my doctor thinks that is the best ratio for my type of problem.

    To be continued in the next post
    Last edited by Sunshine; 03-03-2018 at 02:55 AM.

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  3. #22
    Distinguished Community Member Sunshine's Avatar
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    Everything I have read indicates that you should try to use the lowest dose that works. Higher doses do not necessarily need a better response and can lead to marijuana resistance. If you develop marijuana resistance, you have to stop for two days and then slowly start it again.

    My first dose of marijuana worked in 45 minutes. I couldn’t believe it. I did not expect that it would help at all since none of my other medications helped much.
    Last edited by Sunshine; 03-03-2018 at 02:57 AM.

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  5. #23
    Distinguished Community Member Sunshine's Avatar
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    Many of the local governments have voted not to allow dispensaries. Because of this, the marijuana companies will do delivery right to your front door. The problem with that is you have to stay home all day because they will not tell you until an hour before hand that they’re coming.

    There are many communities that will allow the dispensaries. But this is a new business so it is going to take a while for the different companies to set up bricks and mortar store fronts. I suspect this is true in most states except for where they also Have recreational marijuana such as Colorado and California.

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  7. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default MMJ in California

    ((((((Sunshine)))))) ~

    In California, MMJ was legalized by Proposition 215 in 1996. It was only last year that voters decided to legalize recreational MJ, or as it's called here: "Adult Use."

    https://en.wikipedia.org/wiki/Cannabis_in_California

    The Adult Use legalization has created a ruckus in the MMJ arena, as the laws of distinguishing between Adult and Medicinal uses are complicated and blurry.

    We have MMJ store front dispensaries and delivery only dispensaries. Certain THC products, like vapes and capsules/tinctures, were available for purchase on line from the manufacturer to be delivered by a carrier, such as On Trac, within 2 days. With the passage of the Adult Use law, those on line sales are now forbidden.

    MMJ patients pay far less for MJ than do Adult Users. MMJ patients are allowed to possess far more MJ than Adult Users. Adult Users pay tax on MJ; MMJ patients do not pay tax.

    STEPS TO BECOMING AN MMJ PATIENT

    Three years ago, a friend of ours needed MJ to control vomiting from chemotherapy. None of the pharmaceuticals helped. She went to the county seat, where dispensaries and MMJ doctors were available in a seedy part of town. She met face-to-face with an MMJ doctor, who asked her one question: "What do you do for a living?" She replied that she was retired. He gave her a Recommendation (the term used in lieu of prescription), and she was on her way to the dispensary.

    Now, there are websites, where people can register for an MMJ recommendation.

    The On Line Process:

    Fill out a questionnaire, including the malady for which you need MMJ, download a photo of your driver's license, pay $30 by credit card, and wait for a phone call with an MMJ physician. After a 5 minute conversation with the doctor, a recommendation is emailed to you, and you can begin ordering on line from delivery dispensaries serving your area.

    In a week via snail mail, you will receive a "recommendation" letter signed by that doctor, and a laminated MMJ card with your photo and date of expiration. The card is good for one year, and the entire process must be followed again to renew it every year.

    Delivery Dispensaries:

    Most delivery dispensaries will deliver your order within 90 minutes or less, depending upon where you live and traffic. Most require cash, but some accept credit cards, with a fee from the credit card company. Most delivery persons ride motorcycles to get through traffic faster.

    Most delivery dispensaries offer a variety of freebies, discounts for seniors, veterans, and persons with a disability. Some have reward systems, where the more you spend, the bigger your discount on your next purchase. Most have "specials," particularly at 4:20 p.m. Your purchase is called a "donation."

    The biggest downfall of these dispensaries is that their product lines vary considerably, and if there is a particular strain, or brand, or type of MMJ that you prefer, you may find that it is no longer available at one dispensary, so you will have to search for what you want/need from other dispensaries.

    About Dosing

    Most employees of these dispensaries are known as "budtenders." They can offer their opinions, but they are not qualified to provide dosing or guidance on which product will best meet your needs.

    The on line MMJ doctor doesn't provide dosing. In fact, it's likely that the doctor will never speak to you again, unless that doctor is the available physician when you renew your recommendation each year.

    There are websites, which explore dosing and strains and all things MMJ. Their reliability is unknown.

    Some of our friends have "herbalists," which has nothing to do with MMJ. They have successfully treated their ailments with the herbs and detoxing tinctures, which their herbalists have provided to them. Whether there are similar "Herbalists" (capital H for MMJ), I don't know.

    As far as dosing is concerned, I think it's wise to take it slowly, as you are doing, and let your body tell you when you've hit the right dose.

    Jonathan (my son) takes 3 anti-seizure drugs (AEDs). We don't rely on a neurologist, since none of the neuros in our area accept Medi-Cal. Jon's PCP prescribes the drugs, and depends upon me to tell him the dosage.

    Jim and I can tell when Jon's meds are getting toxic, especially if he's not excreting through urine and feces as well as needed. We can tell when he's too low, through seizures and insomnia. We have blood levels taken, but he changes from day to day. So we go by his clinical presentations, and we decide to increase or decrease his dosages on his meds, or just one med or two of them, based upon how he is/feels.

    We adjust his doses, when he's on an antibiotic, because we know his levels will drop. And when they do, and he has a seizure, we gradually increase his dosage until the seizures cease.

    Jim's doctor just told Jim to take 4 steroids/day for 5 days. He meant after Jim's next infusion, but he didn't specify that, and Jim took them before his infusion. It was the wrong dose for Jim anyway, as he needs to be on a 6-5-4-3-2-1 taper.

    So, doctors don't always know the right amount to prescribe, even when the drug has been researched extensively for decades.

    Trust your gut. Listen to your body. And don't worry about getting a little high. It might help you relax and sleep. If it's uncomfortable, it won't last, and you can adjust your dose from there.

    Sending healing energy your way ~

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  9. #25
    Distinguished Community Member Sunshine's Avatar
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    Thank you for your wonderful post Rose!

  10. #26
    Distinguished Community Member Sunshine's Avatar
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    Marijuana doctor said that almost everybody develops resistance to marijuana. The Cannibis receptors become depleted. So, No matter how much higher OR lower the patients dose themselves, the resistance does not improve.

    The way to deal with it is to stop it completely for 48 hours and then slowly titrate up for the next four days until you reach a therapeutic dose. Research shows the cannibis receptors regrow themselves during that period.

    A week ago I became suspicious that I was developing resistance because it was not working quite as well as it had. So, I stopped dosing late in the day on Saturday. On Sunday, I had only the same amount of mild discomfort all day that I had when I was on marijuana. So, I was puzzled.

    However, today I woke up with significant neuropathy, as intense as I had been having before I ever started marijuana late September.....Clearly it took 24 hours for it to wash out of my system.

    Tomorrow morning I will restart the marijuana at a very small dose, as recommended by the doctor. I will continue that until the sixth day when I can resume the therapeutic dose. It is even possible that I will not need as large of a dose. However, that is unlikely since I was at a very low-dose even when I stopped.

    It will be a rough ride but worth it.

  11. #27
    Distinguished Community Member Sunshine's Avatar
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    Still on the very low dose with modest benefit. 3 more days until increasing dose to therapeutic level

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  13. #29
    Distinguished Community Member Sunshine's Avatar
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    Back on my regular MMJ dose which is still lower than doc recommended.

    One way to discourage becoming resistant to MMJ is to stop it for 24 hours once a week. Will do this becaus the first 24 hours without it was not so bad. It was the second day of the 6 day anti resistant program that was tough.

  14. #30
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    Healer.com is a good site for instructions on how to work with MMJ. They accept donations but it is free to view

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