My experience with CBD/Cannabis oil

I found this forum while searching for info on CBD/Cannabis oil for treating Lyme disease. I've been lurking around here now for a while and it seems like a nice community and so I thought I would share my personal experience with CBD/Cannabis oil.

First a little about myself. I was most likely bitten by a tick in August 2005, it started out with flu like symptoms at the end of 2005 that would not go away. My throat was sore and my nose was runny. This period lasted about 6 months and during this time the symptoms started flaring so that I had to stay home from work a few days per month every month. I had a bout of pleurisy (inflammation of the lining surrounding the lung) and finally I got strep throat. The strep throat was treated with 12 days of Amoxicillin and all my symptoms disappeared, for a while. The symptoms started slowly coming back over a period of 3 years at which point I started looking for a doctor. I spent the next 2 years bouncing between different doctors and was tested for a wide variety of diseases. I also did an ELISA test for Lyme that came back negative (at this time I was not aware of the low sensitivity of the ELISA test).

Then, during my research, I started reading about Lyme and the more I read the more convinced I became that that was my problem. I found a specialist but he was in another country and I had to travel 8 hours by train to go there (I live in Europe). He diagnosed me with Lyme(clinical diagnosis at this point) and I started treatement with Doxycycline, Hydroxychloroquine (Plaquenil) and Metronidazole. For the next 22 months we tried a bunch of different oral antibiotics and while there were improvements they were never long lasting. A this point it was getting difficult only communicating via email and I ran out of ideas and the doctor also seemed to have run out of ideas.
Then I finally found a doctor in my home country and one which is only 30 minutes away by bicycle (I don't dare to drive anymore due to the dizziness and difficulty concentrating). We tried a few more antibiotics and we also tried some anti parasite treatment but without any real improvement. So far I have taken Doxycycline, Minocycline, Metronidazole, Tinidazole, Levofloxacin, Azithromycin, Cefuroxime, Co-trimoxazole (Bactrim) and Rifampicin in different combinations and durations.

about 1 year into the antibiotic treatment I sent blood to be tested by Infectolab in Augsburg. They are supposed to be one of the better labs in Europe. They do a test called ElispotLTT, which is a lymphocyte transformation test. They claim it has higher sensitivity while maintaining a high specificity (meaning low chance of false negative or false positive response). All in all I've been diagnosed with the follwing:
Lyme (ElispotLTT ,I tested 10, 8 and 2 in the different tests (I think it tests for different parts of the bacteria) and anything above 2 is considered positive, this later dropped down to 2, 3 and 2 with further treatment)
Chlamydia Pneumoniae (ElispotLTT (inital 18, now 3) and antibody positive)
Brucella (antibody positive)
Yersinien (antibody positive)
Mycoplasma (antibody positive)
Bartonella (Clinical diagnosis based on bartonella rashes on my hip and in my armpits. Additionally based on the symptoms like painfuls soles of my feet, especially in the morning, neurological issues (paresthesia) GI issues (nausea, vomiting) and psychological issues (mood swings, rage etc..).

From the latest blood test results I believe that it's possible that only the Bartonella infection remains. The other tests are borderline or indicative of an old infection. It also fits with my symptoms, all of which could be explained by Bartonella.

At this point I was desperate and so I started seeking out other treatment possibilities and that's how I found cannabis. First I found the article by Shelley, a girl who claims to have cured herself of Lyme using Cannabis. www.collective-evolution.com/2013/09/12/amazing-story-the-healing-power-of-cannabis-oil-on-lyme-disease-and-lyme-co-infections/

Then after further digging I found this research paper published in 2008. pubs.acs.org/doi/full/10.1021/np8002673
In this study they tested different cannabinoid compounds (the active ingredient in Cannabis) against 6 different MRSA strains. What they found is that many of them are effective antibiotics at reasonable dosages and they were fairly equally effective against all strains unlike the traditional antibiotics.

With this in mind I started some experiments of my own. I dedicated 3 weeks of vacation to taking as much cannabis extract as I could handle. What I found is that at lower dosages it would relieve my symptoms but as soon as I increased the dosage I started getting negative effects like pins and needles, increased dizzinies and just really tired in general. At first I thought this was just a reaction to the THC seeing as I'm not an experienced user but now I think they're Herxheimer reactions. Two weeks after my vacation ended I started seeing some improvements but they slowly faded over the next few months. I also realised that due to the strong Herxheimer reactions I had it would be impossible for me to try this treatment while still maintaining a full time job.

To rule out THC as the cause of my issues I bought some CBD oil made from Hemp. I was thinking that if it really works then the CBD oil should also cause a Herxheimer reaction. I started trying it out on the weekends as I was worried about a potential Herx leaving me to sick to go to work. The inital dose was 50mg, no effect so I increased to 100mg, still nothing. I went up to 200mg and I started noticing some effects. Just a bit more tired nothing major. I was getting restless at this point as I needed to take a decision whether to go on long-term sick leave or not to try it out fully.

I upped the dose to 500mg and what happened next was not pleasant and I can not recommend anyone to try this. After about 1.5 hours my ears started ringing, now I normally have a bit of tinnitus but it's only really noticable when it's completely quiet but there was no ignoring this. It was like in the movies after an explosion where everything is quiet except for a ringing noise. Then I started feeling like pins and needles all over with a slight burning sensation in the skin, not too painful just uncomfortable. I was also extremely dizzy and I could barely walk. I had to hold on to the walls to go to the kitchen. It also made me feel like I was going to die (strong chest pain, shallow breathing) but knowing that that's not an option helps a lot (there has been no reported death due to Cannabis). It was very similar to my previous experiment with the Cannabis extract.

To make really sure I asked a friend who's a regular cannabis user if he would be willing to try the CBD oil. According to the studies I've read, dosages up to 600mg should have no significant side-effects in healthy individuals. So he took the full 500mg and 3 hours later he still did not notice anything at all whereas 3 hours into my journey I was still lying in bed barely able to move.

From this result I took the decision to stop working and try this full time. I'm now 8 weeks into the treatment. I've been taking dosages in the range of 400-500mg CBD + 150-200mg THC, I believe a combination of different cannabinoids will yield the best result, at least it seems to do so for other conditions where there is a synergy between THC and CBD. It's possible that CBD alone is enough but since I have the chance to use both I will. It took me about 3-4 weeks to reach that dose. You have to slowly increase or decrease the dosage depending on the reaction you get.

It's been a bit of a roller coaster so far. It took about a week of slowly ramping the dosage until I noticed the Herxheimer. Then week 2 and 3 were pretty miserable. Week 4 I started noticing some minor improvements. Week 5 was a bit worse again. Week 6 was pretty good, I was feeling a bit better with all symptoms slightly better. Week 7 was awful, I just felt really sick with a sore throat, runny nose, dizzy, nauseous, chills/shivering, hot flashes and extremely tired like walking around in a fog/dream (perhaps nightmare would be a better description). It's like it triggered an immune reaction. My thinking became very negative at this time and I did not think the treatment would work at all anymore and that I had wasted 7 weeks feeling like crap for nothing. I started to doubt that such a strong Herxheimer reaction could be possible after 7 weeks of treatment and maybe I was just making myself sicker. At the same time there was some trouble with the insurance company I had to deal with, very stressful when you're that sick. Thanks to the support from my family I pushed on and I'm glad I did.

Week 8 came along and I started to feel better again, quite a lot better. Much less pain, anxiety is greatly reduced and I feel like the fog is starting to lift and I'm much more motivated to get things done, like signing up for this forum and writing this essay of a post :)
As another example I have an exercise bike that I ride regularly and I've been able to increase the intensity a lot these past few days. When I started out 8 weeks ago I would ride about 3-4 km at a time at resistance setting 2 out of 8. I'm now up to setting 5 and today I rode 16 km without stopping (that's about 40 minutes of biking, something that would previously have been unthinkable). Normally I would feel sick after exercising if I pushed it even a little bit but today was no issue whatsoever.

I still don't feel confident saying that it 100% works but I've had some very promising results and I will continue slowly increasing the dosage. I believe I could safely increase the dosage by a factor of 5 for a shorter period of time if need be and if I have the Herxs under control.

I have also combined the CBD/Cannabis oil with the Buhner Bartonella protocol minus the Sida acuta as I couldn't find that anywhere in Europe. I figured it can't hurt but I strongly feel that the oil is the main contributor. I tried the Buhner protocol for 1 week without the oil before and I did not notice any Herx reaction (maybe it takes longer). I took the Houttuynia tincture for 6 weeks but have since run out. I don't think I will continue with it since it's pretty expensive and is a bit of a hassle to get a hold of.

I also took some left-over Azithromycin in week 3 and 4. Also, since I don't feel comfortable discussing this with my doctor he might put me on a treatment of Minocycline combined with Rifampicin in the near future. I'm not sure how I feel about that. On the one hand it might be good to attack the bacteria from all angles on the other hand I have taken a lot of antibiotics and my stomach is finally starting to recover. It may only be for a few weeks so perhaps it won't be that bad if I take plenty of probiotics. I have taken this combo before for many months without any particular issues but my stomach was in better shape back then.

I see now that this post turned out very long, hopefully some of you made it through. I just wanted to share as much as possible with you so that you can decide if it's something worth pursuing or not. If you have any questions please let me know and I will do my best to answer them. I will keep updating this thread as the treatment progesses.

TL;DR I've been ill for 10 years, in treatment with anti-biotics for 4 years, after 8 weeks of treatment with CBD/Cannabis oil I'm doing a lot better. Still not 100% certain if it will lead to complete remission yet but it looks promising.

Post Edited (Ohyran) : 6/25/2015 11:51:01 AM (GMT-6)

Ohryan~ I wish you continued success & appreciate your posting. The link you posted did not work for me, but I did find this 2013: http://www.ncbi.nlm.nih.gov/pubmed/23892791

Previous forum posting with some discussion:
https://www.healingwell.com/community/default.aspx?f=30&m=3342947

Oh my,

Thank you so much for that great information.

I now have so many pertinent suggestions from this forum, I've realized I need to start writing them down.

LOL, I had to laugh when you said, "I dedicated 3 weeks of vacation to taking as much cannabis extract as I could handle."

Goodness, I bet there are some college students who would love to do that.



I'm just joking.

I get pretty bad tinnitus from herxing as well (at least I think it's from herxing). Seriously, the first time it happened, I thought there was a potentially serious electrical problem in my house, and someone told me to call the fire department, and I did!

They took the call very seriously, and inspected my entire house, but there were five of them, and not one heard the sound. So I went to the doctor, and of course, he didn't do a thing for me.

I've been trying to get a grasp on the tinnitus, and see if it's linked to a particular coinfection (or not).

Since I can no longer afford lab testing that isn't covered by insurance, I would really like to know what your symptoms are in reference to coinfections like Brucella and Chlamydia. I have some symptoms I'm certain aren't covered by my current dxes, although so little research is done on the topic of Lyme and cos, it's hard to know.

Welcome to the forum, and thanks for chiming in.

I wish I could take a train instead of having to drive or rely on my friends! Oh well . . . .

Margaret

I was thinking how much that would cost also. The Bluebird that I purchased has 500 mg for $80 I think....most are 250 mg per oz. I am taking 15 drops but have only noticed better sleep. It tastes really strong to me so I have to chase it with something like grape juice then a spoon of peanut butter. Ohyran you are brave to put down that much! My tummy couldn't handle it.
When it is legal in my state, I might consider growing it and making my own. For now, don't think I will purchase another bottle.

Happyjo, yea right! Land of the free. What a joke!

(Why am I hearing the strains of the movie song, "Born Free" & yet...)...

As for the putting your name on the dhs list, I expressed concern re future employment, "stigma," or what have you, & they said info could not be released to anyone. I dunno...feeling like "Brave New World," & yet just a green lil' mother earth plant!

But still interested in benefits for anyone else who is trying this who is willing to share.

(I agree, Margaret, the smoke fest mentioned during vaca did sound like a long college spring break-lol!)

"I'm hoping that you guys in the US can create an avalanche effect where the rest of the world follows" - Me too, me too!!!

I believe it's a medicine that we have been long denied. I'm really glad that it's being looked at so seriously for Lyme and company. I believe it could be helpful in many areas of symptom relief and I know that it's being looked at as part of treatments like you are doing.

I hit a bit of rough patch again as expected. I'm really exhausted, my throat is sore, my nose is runny and the joints and muscles are painful. It also seems the temperature regulation is not really working. I keep switching between shivering under the cover with a sweater on or the sweat pouring out feeling overheated.

Even though I expected a down-turn at some point, this is the 4th or 5th up-down cycle, it's hard to deal with. Like last week I was feeling well enough that the daily tasks like shopping, cooking and cleaning became child's play. The last few days I'm having to drag myself out of bed and force myself to do even the simplest tasks.

I also tried to exercise a bit on the stationary bike but I felt completely weak. I barely managed 10 minutes at a lower resistance setting and afterwards I felt clammy and nauseous whereas last week I did 40 minutes at a higher resistance and felt pretty good afterwards.

I'm not sure whether to keep the dosage the same and try to push through the bad times/Herx or if it's better to back off a bit until you're feeling better. What do you guys think?

One thing I clearly noticed is that on good days I can take a much higher dose without negative effects. Sometimes it can be as much as a factor of 2 between a good day and a bad day.

On the positive side I noticed my skin condition has improved a lot. I used to have really dry skin on my elbows, knees and below my feet. It would form a thick layer of dead skin that would crack and sometimes start bleeding and the skin under my feet would feel like sandpaper. Today the elbow and knee skin are pretty much back to normal and the feet have greatly improved. On top of that I also noticed that the skin on my face looks better. I used to get a lot of pimples and I would also get these little raised bumps that looked like pimples but there's no redness at all, they would especially appear along the jawline. They're also close to gone.

I talked to my doctor and I told him I was trying out a herbal protocol and that I felt I had some improvement. He thought that sounded good and we will wait with the antibiotics until we know how it works out with the herbs. I think that's the best solution as I would rather avoid the antibiotics if I can since my stomach is not in great shape and I feel it has improved since starting the treatment and I wouldn't want to ruin that.

A question to those who have gone into remission or have greatly improved. At what point in the treatment did the good-bad cycles stop?
I find this to be the most frustrating part, where you start to feel better and then it crashes again.

Rather than lowering your dosages of anything, may I ask what you are doing for detoxing? Obviously you are exercising, but there is so much more to detoxing, so maybe you can add more or increase your detoxing as it sounds like that could be what you are experiencing.

Hi Fellow Lymies in Lyme Hell-o

I have been looking for a group like this for years! So glad to have found this group!

20 years of Chronic Lyme has resulted in afib amongst too many to mention other physical and mental issues. My legs suffer the most, like a tourniquet always tightening my legs.. horrible aching. I'm on heart medications for at least the past ten years but now know it's definitely the Lyme behind all this. I know how to stop the afib, so far I've been lucky.

What is working is medical marijuana. I am a licensed user living in NJ. I know medical marijuana kills Lyme and I cannot believe they are not pounding down the door with research on this!

The issue I have is the bad herx reaction from the marijuana. I was using a vape and I have emphysema, so that didn't work real well. Plus, like clockwork every 2 days after I tried vaping, I always got a bad herx reaction and afib attack. It scared me so I backed off of using it.

My neurologist recently suggested when I told him the pain pills are like candy and they're helping less and less. When I was vaping I was able to decrease my pain meds by 50%! The neurologist then told me to consume as much as I can with edibles. Just made my first cannabutter and thankfully I only used 1/4 of an inch by 1/8th on a cracker and they are right, edibles are 10 times stronger! He wants me going back to my cardiologist and TELL him to give me something for when the afib attacks occur.

I'm going to try to stay on it. So far, with the strains I was given, I can work (from home).

There are so few of us that I am aware of who are treating Chronic Lyme with medical marijuana. I also wonder why there is not a huge call for Lymies trying this treatment to data-gather and learn more from our experiences.

We need to find a study. The faster we do and partake, the sooner a cure will be found for Lyme form cannabis. I know this is true. Some time you have such a strong feeling about something that you know in your heart and every part of you wants to scream WE'RE HERE, WE'RE TAKING MM TO KILL OUR LYME AND NO ONE IS BOTHERING TO PULL US TOGETHER TO HELP FIND A CURE WITH CANNABIS!

I think we all know why this is not happening and I hope I live long enough to see all of the truth come out.

Sorry for venting... I'd really like to start or join a group that has Chronic Lyme and is helping each other monitor dosages and results as a pilot study WITH A LLMD! Does any one know of a LLMC that support taking medical marijuana?

Please contact me at [email protected] if you would like to join me.

Time for another update:

I've been through another good-bad cycle and am now in a good cycle again. Over the last few weeks I have been experimenting with higher dosages. I was starting to get to the point where the dose I was taking only caused a mild Herx so I thought it was time to increase it again. I went up to around 600-800mg CBD +400-800mg of THC. The first day with the dose increase was really tough, I had terrible anxiety and it itched so much the scratching left the skin raw. Day two was already a lot easier with much less anxiety and the itchiness dominating the Herx reaction.

5 days into this regimen I was doing quite ok so I got hubris and took a massive dose of 1g CBD + 800mg THC. This was too fast of an increase and I almost had a panic attack while trying to fall asleep, which was extremely uncomfortable. I felt like I would die unless I could get it under control. I found out ,that for me, exercise does wonders for reducing anxiety. So I hopped on the stationary bike 5-10 min and then I could eventually fall asleep.

The day after I felt pretty dazed but no too bad. Then 2-3 days later the real Herx came and I was knocked back in bed. I vomited just after getting up in the morning and was nauseous pretty much all the time. For some reason I also have to eat a lot during this time as I feel like I have constant hypoglycemia. That's what really makes it tough having to force yourself to eat 8 times a day while you have 0 appetite and constant grinding nausea.

As luck would have it during this period I had some trouble with the insurance company as they wanted to cut my sick-leave short. The doctor from the insurance company said "there's no reason to be on sick-leave for Lyme disease unless it's acute". It seems my LLMD had already anticipated this so he also put burn-out as diagnosis.
However, to be diagnosed with burn-out I had to see a psychatrist. I had to take the train to go see him and I could not stop sweating. I spent 35 minutes on the train with sweat running down my face onto my shirt completely unable to get it to stop all the while feeling like you're going to vomit. Doesn't help when people start looking at you weirdly either.

He diagnosed me with severe burn-out and I believe that's a possibility as well. Although I believe that Lyme and Bart complicate the situation, something he did not agree with but we agreed to disagree on that point. I don't think it's unreasonable that you would become burnt-out after 10 years of trying to work through chronic illness. He believes it will take at least another 3 months and he would try to get the insurance company off my back so that was really nice.

The day after the visit I was starting to feel better again so it looks like I managed to have the appointment on the absolute worst day. The last few days I have been doing pretty well and I managed to get some outdoor activities in. Two days ago I went for a walk in the woods, which was really nice. Yesterday me and a friend drove up a mountain and walked around for a bit. Then we sat down and enjoyed the view of the valley below while eating some sandwiches. Then we drove down and BBQed a really nice T-bone steak with potatoes on the side. It felt great to get out a bit, I think the last time I did something like this was several years ago and a few months ago it would have been unthinkable.

I have seen some discussions in other threads on how to get a hold of the oil or how to make it. If there is interest here I could write up how I do my extracts safely without fancy equipment?

I just got back from 2.5 hour bike ride and hike in the woods, I probably burned close to a 1000 calories, which felt great considering I've gained a 100 pounds since becoming ill. I finally started to lose weight for the first time in 5-6 years. So far I lost 3-4 pounds, which is not huge but a good start.

Another cool thing is that on the way to the woods there is a hill and 1 month ago I was not able to bike up the hill and had to push the bike up. Two weeks ago I managed to bike up the hill for the first time and today I biked up the hill again but in the 2nd to lowest gear instead of the lowest this time. I'm finally starting to be able to put some strain on my body without it collapsing on itself and it feels great. I still have a long way to go but I've made some great progress the last few weeks.

I have also noticed that my sinuses started to clear out. I did not realize how clogged up they've been until it started to clear up. It's like I was previously breathing through a straw and now the path is clear. As an added bonus it also seems to have resolved a chronic inflamation I've had in the wrist since before I became ill. It's no longer painful at least, I will see if it holds up once I start biking more aggresively again (I used to be a downhill mountainbiker before I became ill).

The last week I have been poking the bear so to speak. I have noticed that it's taking ever larger dosages to generate a Herx and on the good days there barely is one. So I thought it might be time to up the dosage on the bad days as up until now I've taken more on the good days and less on the bad days. Now I'm doing it the other way around. I take the large dose on a bad day. So I upped the dosage to about 900mg of CBD+CBDA (from hemp oil) and 400-600mg of THC (tincture made from about 4g of buds at maybe 10-15% THC and 5% CBD).
I'm going to try and keep this dose up as long as possible but sometimes you have to allow yourself a few days inbetween to recover. I usually drop down to half the dose once the Herx is in full effect.

After 3 days at this dose the Herx came. It was pretty strong. It wasn't the worst one I've had but it was very weird and I felt really dizzy and disoriented. On top of that the nausea got pretty bad and it was a struggle to get enough food in me. Luckily I started freezing food for these days so I don't have to do any shopping or cooking. At the peak of the Herx I prefer not to leave the apartment because of the dizziniess.
A good thing is that I wasn't that anxious during the Herx. Normally I'm an anxious wreck but this time it was ok.

Now that I'm feeling better I will also try to write up how I make my tinctures. I prefer to do extracts with alchol, it's a bit easier to deal with and you don't have to worry about residue in the oil. I also don't boil it down to oil completely, I leave some alcohol in to make it easier to handle and you can use a dripper bottle to dose it into gelatin capsules. Luckily were I live you can buy 96% alcohol from the pharmacy.

Post Edited (Ohyran) : 7/24/2015 3:10:03 PM (GMT-6)

has anyone tried the new iIV drug from India called Vanco plus?.It is a combination of vancomycin and ceftraxione(Rocphin) .They say the combination creates a synergistic effect which is more effective than either of the two given seperately. I can get it from a friend in India but have been on both drugs seperatly with no effect i am skeptical. I wonder if anyone has tried it oir know of someone with lyme has heard anything about it. After suffering for 25 years of lyme i am desperate for an answer.