Thank you for your kind words JovaLyme, really appreciate it!
These battles are something else. I really believe in patients supporting one another. And I saw you posted those wonderful quotes in the other thread. Early on in my first years of illness I created a wall of inspirational quotes of all types, motivational quotes regarding hardship and enduring. It was very helpful, sometimes I didn't know if I would make it. But looking at people who endured the worst this world has to offer, and yet somehow came through, this provided hope. And hope is integral.
And sometimes it is hard to not be upset by what we have lost, but I like to contextualize things and believe we can learn and grow from our challenges, they can help form us into something even better. Which means, the suffering can have meaning, it is not lost time, but a forging by fire. I read Viktor Frankl's book Man's Search for Meaning some years ago, and it really touches upon the power of this thinking as regards suffering.
Re: treatment approach, Dr Kinderlehrer has an even more conservative approach than that, sometimes doing a 30mg-62mg initial test dose. Waiting, gauge response for some days. Then only redosing so long as patient seems to be doing ok. Some of the frameworks involve doing 62mg every third or fourth day, and sometimes even just once a week. So there is a lot of variability in how to do this. But doing it this way makes it possible for even the most sensitive patients to jump on board treatment, the key is finding the pacing that works for YOU!
Also, this med seems to have some rock solid modes of actions (possibly by disrupting metal ion functioning of the pathogens), so it may be less prone to resistance issues. Which means the low slow pulse dosing may prove less problematic than with the conventional antibiotic treatments.
Always keep faith. Whenever in need, please hit up the community. There are a lot of amazing people in the lyme community, I like to think we help carry one another on the path of healing. The ones who've been in the trenches and have come a ways, they circle back and pick up those who are just starting out or are struggling.
Thank you Sebreg.
I don't know where I would be without this forum. The information and knowledge is amazing. I would never have heard of Disulfiram or any of the other treatment if it wasn't for the people here. I've tried so many things based on the information here. I haven't had any success with any of it unfortunately, but that's true for so many here. We just have to keep trying and find the thing that works for us. Lyme seems to be a very individual illness that hits us all differently and responds to different things based on our own genetics and circumstances.
Some days I genuinely don't think I will be around for too much longer, but every now and again I feel a very small improvement and it gives me a tiny glimmer of hope that keeps me going. I desperately want my life back and to be a daddy to my little boy and provide for my family. Right now, I can barely walk, talk or function at all, but I'm not giving up. I make a point of going out to buy milk even if it takes me forever to get to the store and nearly kills me doing it. I went out this morning and it took me so long and at one point I didn't think I would be able to get home again, but I will keep fighting. I've been fighting all my life and I'm not going to give up now. I have had about
as bad a life as is possible. I've known nothing but pain, difficulty, disappointment and hardship since I was 4-years-old. I don't really know why I was put on this earth, but I was and I will do everything I can to get my happy ending.
I try to find the humour in it all. When I was staggering up the road earlier with my walking stick I noticed a very elderly lady behind me who also had a stick. She had to have been 80 years old or more and she was gaining on me before she turned down another road! I'm 46-years-old and an old lady almost twice my age is moving more steadily and faster than me.
That's the reality of Lyme, but I have always been able to laugh at myself and I won't stop now. Humour has got me through everything.
I have ordered some Disulfiram today and will start off on a very low dose as you describe. I'm not messing around with low doses of doxycycline or herbs anymore. If DSF has been shown to hit this disease then I'm going for it. I will go in very low and just see what it does. Then I will go from there and hopefully work it up.
Thanks again Sebreg. I pray we all recover and return to a normal functional life.