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.
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 descript
ion). 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)