Hey folks. I've hit rock bottom. Yet again. I don't know what to do.
I've tried Ceftriaxone but didn't feel it help. I've tried clarithromycin and rifampin and rifabutin but it made my gut worse and worsened motility as well. Please hear me out and understand that I'm paying attention to my body and I know these aren't herxes. I just deteriorated, my baseline just worsened. I've tried malarone, cryptolepis, sida acuta, alchornea and brucea javanica, with little to no result. Max dose of these herbs, might I add... It's really weird.
I've been trying the herbs, with next to no result and just don't know what to do. You name it, I've tried it. Full buhner protocol for lyme, bartonella and babesia.
My worst problem is my digestion. Lyme and co wreaks havoc on the GI tract and I am constantly constipated. I believe the reason, is due to my vagus nerve being affected by these infections. My motility is terrible, I manage a BM once or twice a day, but it's almost always constipated to some extent. I have to drink about
a litre of water before my gut starts working in the morning and usually go about
an hour after I've been to bed.
Disulfiram is a no no. It made me worse. I was desperate, thought it might help a second time round. Nope didn't work. No lectures on this one please.
If I continued with the antibiotics I know that I will be far, far worse off for it. I'll probably be crippled even worse than I am.
Even some of the herbs worsened my motility and I don't think it's just a herx. Again, the baseline just worsened and never improved after using them.
I feel little to no sensation in my bowels. Does that make sense? It's like that sense of satiety after a meal doesn't happen. I don't feel good about
anything either. It's like the digestive system has an effect on wellbeing, I don't doubt that but I just feel dissociated and without any real emotion.
I can take mega doses of the buhner herbs with next to no response, especially the immune modulators. No herxheimers or anything and I'm talking tsps of the powders or tincture, literally zilch from them. Examples are cat's claw, eleuthero, ashwagandha, rhodiola. I can take full dose of andrographis with no problems whatsoever.
I also have horrible POTS symtpoms. Namely, venous pooling, this used to burn at night and upon exertion, a bit like erythromelalgia. I also suffer from raynauds in the winter and my fingers swell up and I get chilblains. As well as pseudo seizures which are definitely correlated with my digestive issues. It's hard to explain but essentially, depending on my digestion I can suffer abdominal spasms and spasms in my legs and back muscles also. I get horrible bouts of back pain due to the motility issues as one can get with constipation.
I guess the above mentioned two symptoms can be put down to dysautonomia.
These are my worst symptoms. I deal with noise sensitivity and and a bit of OCD, depersonalisation and anxiety. I used to feel electrified all of the time especially when I'd have more anxiety but this has disappeared after using the rifabutin. It doesn't seem to have been a positive thing however.
What the hell am I gonna do with myself? I can barely function. I don't know what to do. I don't want to take any more risks and further deteriorate.
I did some testing, all negative except from a positive band 23 on Immunoscience Labs test which I was dubious of. Armin labs told me I had no postives but a low CD57 at about
65 or so.
I had an ANA test done at the hospital, negative. I also had a CSF sample taken and the only thing abnormal was a protien count that was high, it was 832 mg/l with a range of 80-320 mg/l. This was a year ago.
I just want to give up. I'm tired of nothing working. I've had no quality of life for 18 months now.
I'm considering using Igenex. Is there a cheap panel that includes lyme and co from them?
What is one to do? I feel like giving up. Herbs aren't really doing much of anything and in some ways seem to have made it worse. I'm based in the UK so seeing specialists is difficult. Not to mention I'm fairly disabled at this point. I have little familial support.
I fee like giving up. Life like this isn't worth it. I don't know what to do. I'm not just gonna magic myself well now am I? How has the lyme responded to all the treatments like this? I hate the establishment for just leaving people to suffer like this with next to no recourse. I'm lost here and really need help. It's taken about
2 hours for me to type this down because I just can't focus, I feel so depersonalised and out of it I just don't feel like I'm here. This isn't a life and I need your help. What is there for me to do? I know of BVT. Not too sure about
Is further testing a good idea? I can afford some further testing and if it helps put me on the right path then yeah I guess I'd do it. I'm struggling to find a practitioner who wants to work with me or who listens to me completely as well.
Thanks in advance.
Post Edited (Cignet) : 4/8/2021 1:31:50 PM (GMT-6)