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Posted 4/8/2021 6:13 PM (GMT 0)
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Post Edited (Cignet) : 6/28/2023 2:58:49 AM (GMT-8)

Posted 4/8/2021 6:37 PM (GMT 0)
Sorry to hear how defeated you are!

“ 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.“

What was your schedule for the Rifampin? And did you try mino with it?
I’m not pushing you to do abx - but wondering if you could do a less aggressive approach with them.

I think focussing on your gut and getting things moving is priority.
Have you seen many ND to help you with that?
Posted 4/8/2021 9:53 PM (GMT 0)

Cignet said...
Hey Girlie. I tried the slow approach first which was 300mg a day. I stopped using them at the beginnog of march. I even halfed it at one point but it just seemed to make my gut worse. All done while taking probiotics..

So the dose of Rifampin is 300 mg twice daily or 600 mg once daily.

When I started it with my LLND - I got empty capsules and filled them to approximately half full. So, I started with 150 mg.
Also, splitting the dose into two daily dosing - I know some members take the entire dose at once.
But, i do understand - you don't want your gut to continue to worsen.
Posted 4/9/2021 1:37 AM (GMT 0)
I would suggest stop the antibiotics and load up on probiotics.

I had a similar episode of constipation last month. I was feeling so out of it, but the only thing that came back on the test was my cortisol was elevated.

For some reason, I decided to take sida, mimosa pudica and andrographis, in case it was a Lyme flare. My doctor gave me a philodendron and magnolia supplement that was supposed to lower my cortisol.

I don't know what did it, but my stomach is moving fine now. Maybe it was the philodendron and magnolia, maybe something else?
Posted 4/9/2021 1:55 AM (GMT 0)
The thing that helped me the most was seeing a biological dds and cleaning out my jaw-metals-root canals-wisdom tooth cavitations.-helps my gut the most
Posted 4/9/2021 3:25 AM (GMT 0)
Cignet,

I can’t remember if you ever looked into or tested for CIRS, mold, or mycotoxins.
Posted 4/9/2021 4:55 AM (GMT 0)
Was thinking mold also. Possibly some other toxicity.

Try an IR sauna for 20-30 minute sessions can usually be bought at places for a reasonable price. (Id do this as an experiment) That’ll stir up a detox reaction if I’m right. That may be too long of a session so if you’re sensitive don’t hurt yourself. I’ve found 10 min to be my sweet spot. Lyme can cause that too but your problems may not be directly contributed to an infection.

Also DNRS - while it wasn’t a miracle for me it definitely helped make me a happier and more positive person.

Post Edited (loski01) : 4/8/2021 11:05:02 PM (GMT-6)

Posted 4/9/2021 5:11 AM (GMT 0)
“ I feel little to no sensation in my bowels.”

“ I get horrible bouts of back pain due to the motility issues as one can get with constipation.”

- I had all this when my bowels basically went into lockdown mode in 2015. Had the whole gastro workup, and the doc simply said, “I think you have IBS.” I also started seeing ropeworm in my stool when this was going on, although I didn’t know what ropeworm was at the time.

Natural Calm magnesium powder at widely varying doses up to 6+ tsp at night kept my bowels as loose as I wanted them. Unfortunately, even though looser bowels are easier, they also seem to make me feel quite toxic.

Later, after seeing alternative doctors, I treated ropeworm with Mimosa Pudica for a good while. I can’t say exactly when, but somewhere along the line, some feeling came back in my intestines. For a good while, I felt nothing. I felt no peristalsis at all. I wouldn’t feel anything until it got to the end of the track, and then I would feel the urge to have a bowel movement.
Posted 4/9/2021 10:26 AM (GMT 0)
i think if it were me - and no lyme treatment had brought any relief - i would look into other possibilities

1, mold is a rational suggestion - so mycotoxin testing and the genetic test to see if you are in the susceptible group ( as it seems even high levels are unlikely to be an issue if you are not in that group) - if both were positive the path is very clear - remove exposure and treat with binders.

2, bartonella also fits with this hard to treat type of response to some degree - as does the resolution of burning sensations after a rifamycin type drug regime - this is associated with dysautonomia and neuropathies and is very difficult indeed to detect via blood tests. most are only around 25% sensitive and even the best so far documented with published studies ( Galaxy) are still only around 50% sensitive - so testing is not very likely to give confirmation.
still if funds are available a positive result from say galaxy would at least give you a clear focus and direction.
lack of herxhiemer type responses is not unheard of in lyme / bart - though they may be common and even happen in the majority - herx seems to be another individual variable - and some people with confirmed infections that go in hard with abx do not experience herx and still get better - so in itself does not rule out infectious causes..
for bartonella new persister drugs are starting to be trailed with some success eg methylene blue - so this in combination with herbs - see Marty Ross protocols - or antibiotics - is a potential option. there is also a facebook group for those self experimenting with methylene blue.

beyond that - in the 5 years i went without any diagnosis - the things that i did that helped were the things that help all body systems, and particularly immune system and homeostasis regardless of cause:
- focus on best possible food intake - for both my partner ( same symptoms as i ) and i a strict paleo style ketogenic diet was a game changer - relief from bloating and discomfort immediately and overall improvement in 3-4weeks that then built slowly with time. she was running again in 1 week and back to work in 6 months.
- focus on sleep - regular hours, sleep hygiene, sleep supplements, l-theanine, melatonin, herbs, sunlight in the mornings etc - as even an extra 30minutes a night would improve my day the next day and more so over time. it is also vital for the immune system and recovery.
-regular exercise - just walking initially - improved my overall function and time in nature improved my state of mind and resilience.
- adaptogens - help the body achieve homeostasis - regardless of stressors - not a miracle cure - but gave me another few % over time - i used eleuthero, ashwahganda, rhodiola - in strong tonic doses per buhner.
-DNRS or some form of ANS calming treatments may fall into thsi category also - but i have little experience with those so far beyond mindfulness meditation

as well as the clear multi-factorial approach followed by pretty much all of the prominent LLMD's many here have found that - while it would be nice if there was a single curative treatment - the reality seems to be that, once chronic, a multimodal approach is needed to overcome this complex disease.

for a long time i tried this treatment and then that one - each time hopeful that this would be the answer - but over time i have come to believe that the disease is complex and multisystem in nature and it may take many individual interventions concurrently - that each move the needle just a little - but that together have sufficient impact that our bodies immune system can finish the job it has started. this reasoning has helped me take a long term approach to treatment. each treatment no longer needs to be a game changer in itself - and there are always more treatments to try.

finally - where about in the UK are you?
i am in the UK also - i built an infrared sauna based on this one -
https://sauna.space/products/luminati-infrared-sauna
it is currently flat packed in my loft and you would be welcome to borrow it for a trial if it would help you.
Posted 4/9/2021 10:56 AM (GMT 0)
This echoes everything I've been saying about dysautonomia/vagus nerve controlling digestion and inflammation. I'm in the same boat as you, although my dysautonomia expresses itself as buzzing and nerve pain.

I do not think more tick-borne disease testing is going to help, unless of course you were looking for bartonella and had't covered that base. But sounds like you've tried extensive herbs and ABX.

You likely have an amped up autonomic nervous system which is throwing off your homeostasis and causing localized inflammation.

I think that garzie's suggestions are all great. I was in the same boat as you. Messed up gut, dyautonomia, curious if i still had an infection. The singe best thing i did was changing my diet and going strict ketogenic. All my gut issues went away and with it the nerve pain. Still had/have buzzing which was driving me nuts up until about 2 weeks ago. Once I've started to recognize that it's dyautonomia and not some nefarious infection or antibody doing it, things started to calm down. Have been doing cold showers, exercising every day, and basic mindfulness. Setting aside time every afternoon to reflect, color w/ my non-dominant hand while listening to classical music, gratitude journaling. These are all things that help the vagus nerve/ANS. Def try DNRS. It wont be instant results, it may take a year or two of living your best life. Go to sleep every day at the same time. Once your gut is better, maybe then you can try abx again?

Just recognize that anything you do that stresses your ANS will likely make you worse. That includes eating horrible food, not sleeping, any addictions which includes iphone/internet addiction and chronic illness obsession, not exercising, and taking supplements which cause your system distress.

Post Edited (dcd2103) : 4/9/2021 5:21:25 AM (GMT-6)

Posted 4/9/2021 4:11 PM (GMT 0)
I strongly agree with the things Garzie and dcd2103 writes. It has been the work on my general health that has helped most, not the supplements and treatment.
Posted 4/9/2021 5:28 PM (GMT 0)
I’d be very careful with IR saunas then. I’d still recommend but I’d stop once the sweat starts after a few minutes. I’m that case buying one online for a couple hundred makes the most sense, places make you pay for 20-30 min.

Do look into mold where you live though.
Posted 4/10/2021 10:07 AM (GMT 0)
i had long periods of going every day but somewhat painful and constipated - i also put this down to some kind of motility issue. but generally my gut was messed up and weakened in multiple ways.

the things that have helped were - initially prescription miralax type stuff which is a polyethylene glycol type compound that causes your stools to absorb water and become more like toothpaste consistency - so easy to pass - i was told by my GP that it is a v safe compound because it is not absorbed - but this turned out to be false and studies of absorption in humans show around 10% is absorbed and processed in the liver and is mildly toxic - so i had to get rid of that as was already having pain in my liver area.

a combination of vitamin C (2-3g a day) and magnesium citrate (2x 800mg a day) seems to be achieving much the same thing. of course the underlying motility issue is still there but symptoms are largely managed via strict keto diet while I work on treating the underlying cause - which i believe is auto-immune nerve damage - which i believe is driven by infection. With luck this will resolve or at least improve once the triggers are removed - but of course this remains to be seen.

my partner had raging anxiety attacks - a few things seemed to help

L-theanine 200mg 2x a day as a preventative

Pasque flower tincture - 10 drops per hour during episodes - seemed to help take the edge off

lastly - an odd one - during an attack - lying on back on the floor with knees up and legs on bed and arms out to the sides calmed the attacks rapidly 8 out of 10 times - we were told to try this by a neurologist - something to do with autonomic dysfunction / low blood supply to the brain causing a fight or flight type reaction. we were both surprised when it worked!
Posted 4/10/2021 12:31 PM (GMT 0)

Garzie said...
lastly - an odd one - during an attack - lying on back on the floor with knees up and legs on bed and arms out to the sides calmed the attacks rapidly 8 out of 10 times - we were told to try this by a neurologist - something to do with autonomic dysfunction / low blood supply to the brain causing a fight or flight type reaction. we were both surprised when it worked!

Garzie,

That’s amazing! I never heard that before. Would you please put this in a separate post entitled “Anxiety - Simple Exercise That Worked.” Many here looking for help with anxiety. Would be very beneficial for many to see this information, I feel.
Posted 4/10/2021 2:20 PM (GMT 0)

WalkingbyFaith said...

Garzie said...
lastly - an odd one - during an attack - lying on back on the floor with knees up and legs on bed and arms out to the sides calmed the attacks rapidly 8 out of 10 times - we were told to try this by a neurologist - something to do with autonomic dysfunction / low blood supply to the brain causing a fight or flight type reaction. we were both surprised when it worked!

Garzie,

That’s amazing! I never heard that before. Would you please put this in a separate post entitled “Anxiety - Simple Exercise That Worked.” Many here looking for help with anxiety. Would be very beneficial for many to see this information, I feel.

happy to do that WBF - i have put the same list out there a few times before already - but maybe a separate post would help some people who search by subject.

ps. although it sounds simple - actually getting someone who is having an anxiety attack to lay down on the floor with their legs up can be fraught with difficulty...

memories of " I AM NOT HAVING A ****ING ANXIETY ATTACK!!!!" come to mind smile
Posted 7/6/2021 4:05 PM (GMT 0)
This really sounds like a case of severe dysautonomia. The gut issues, the pots, the noise sensitivity and startle response.

Similar situation that I'm in. I've stopped all supplements (except for a binder at night, some vitamin d and fish oil). Youre not going to get your way out of this w/ a pill bottle, when it hasnt worked for all these years. I'm sorry to be rude, youre just not. Its not gonna happen.

You need to fix your gut and calm your brain. W/ digestive issues like that you need to be on a strict ketogenic diet until the gut starts healing. And the rest of the time you should be focused on autonomic retraining.

Get the infections out of your head, it sounds like you've treated extensively. Get the endless hunt for the next tincture out of your head.

I keep making this mistake as well, hoping to uncover some infection on some test that will lead me to a tincture that is my silver bullet. Not gonna happen. Do I have latent infections? Of course, my WBC is a 3.0 so of course I do. Will I rid myself of them w/ a bunch of herbs, if my immune system is still in the waste bucket and my autonomic nervous system is on a hair-triggers edge and i cant even digest the food i eat? No way. Once I correct those things and get my immune system in a better place, then yes.

I'd recommend joining the POTS/neurologic focus session on Tuesdays at 10am and see what these people are doing. Its all people in your boat w/ autonomic and digestive issues, a lot of whom are actually healing themselves.


https://www.enableyourhealing.com/schedule

Post Edited (dcd2103) : 7/6/2021 10:14:07 AM (GMT-6)

Posted 7/6/2021 4:33 PM (GMT 0)
It sounds like autonomic neuropathy to me. You yourself said you felt like it was your vagus nerve. You have pots, venous pooling, reynauds.
Posted 7/6/2021 5:48 PM (GMT 0)
i think a lot of us are in the same boat - with mysterious issues - and trying to figure out of its infection or some kind of immune or autonomic dysregulation.

i don't think it needs to be either one or the other exclusively though - i think dcd was alluding to this - i think its probably more a case of infection AND autonomic AND auto-immune/ immune dysregulation issues.

if that the case some people may well get better focussing more on the autonomic - some may get better focussing on the infection side of things and some may do well trying to tackle both

some will feel they are mainly in one cam and others will feel they are mainly in another but some blend of these things certainly seem to go together in most of us.

Cignet - to answer some of your questions

i really don't know what infections i have for sure - symptoms are very lyme like - and have a positive lyme test for Borrelia Garinii -and a low CD57+ count - i also have a positive test for mycoplasma pneumoniae. i have lots of Bartonella like symptoms and had a faint streaks like rash once - and that is high up teh suspect list.
never tested for babesia - believing at the time that it was very rare indeed n the UK ( may not be the case ) - i get strong herx like reactions from anti-microbial herbs and antibiotics

as a result of the above uncertainly - i am treating lyme with a comprehensive buhner protocol based on his second edition book and also a selection of co-infection herbs to hopefully tackle whatever is present ( sida, cryptolepis, alcornea, houttuynia, teasel, berberis ) - that selection has pretty strong coverage for just about everything - but is poss a bit light on the babesia front ( but my symptoms do not seem to fit in terms of fevers, shortness of breath or drenching night sweats etc - but i have had haemolytic anaemia once or twice - which could be bart or babs - have artemisinin on my list to try in case Babs is in the picture )

alongside this i am doing low dose naltrexone for immune function, ivermectin 1x per week for immune function, combination T3 T4 thyroid medications - again to help immune function.

i have recently started methylene blue along side the bart herbs too - which gives me a herx like reaction for around 3 weeks - then i feel better - a good sign i think

overall i'm still improving - so i think i am on the right path - however its still slow progress - has taken around 18months to get up to this dose level.

the co-infection dose includes around

10ml / day of houtty
5ml / day berberis
3.5ml/day each of sida, crypto, alcornea

all split into 4x daily doses before meals and before bed

i have topped out now at the upper end of buhners recommended doses so not sure if i should add more - i am above average weight at around 83kg - and i doubt the herbs i can buy are as potent as buhners - so maybe there is scope - but holding as is for now
Posted 7/6/2021 5:58 PM (GMT 0)
on the alcohol

i buy 25litres at a time - it comes in a 5 gallon one piece thick plastic barrel - very well sealed with a sealed screw cap and super tough polyethene construction - i think they are designed to survice falling off a wagon - i have no concerns having it in the house

ref the storage requirements - the application form asks for a drawing of where it will be stored and where it will be used - i just marked up a floor plan showing it will be stored in a locked cupboard and used in the kitchen - and they were fine with that. i think they just want it in a place that can be locked - and separate from non duty free booze.
although i do everything by the book, in 3 years i have had no contact or visits from HMRC to check any of this.

on the herbs - i have used various sources - 1st chinese herbs, mont eagle herbs in canada, bristol botanicals and napiers and others - but now i buy most of them from a place in poland called LymeHerbs.eu - quality is better than the others - prices are reasonable and service is excellent. he carries just about everything buhner advocates.

if powder is available - then i typically buy that - but some like Cryptolepis is only usually available as whole root - so i grind that myself - but its a tough bugger and i have got through a few grinders over the years - usually just use a cheap liquidizer these days

let me know if i can help in any way
Posted 7/6/2021 7:35 PM (GMT 0)
Cignet, when I read "The issues I'm having are more mechanical, like my bowels just don't move like they used to" this made me think immediately of sibo/damage to your migrating motor complex. This would be in alignment with what others are saying about ANS dysfunction - sibo can often be a downstream effect of it. Perhaps you have already explored sibo. But while probably the main goal would be to address your ANS dysfunction, there are things you can do to help get your bowels functioning better to reduce your suffering. I even found that when I first treated sibo, some of my systemic issues were addressed - I had less muscle twitching, brain fog, tingling etc. Maybe an avenue to explore?
Posted 7/6/2021 8:51 PM (GMT 0)
No worries Cignet. It’s your body you gotta do what you think is best. Just trying to help. Sometimes i can be pretty aggressive in my advice but only when I feel like I need to push someone in a new direction. You do what you think is best, I hope you can beat whatever it is. This stuff is so confusing. I agree about the MMC tho that’s often a big issue
Posted 7/6/2021 8:53 PM (GMT 0)
Absolutely makes sense. If you're interested, I would read up on sibo and the migrating motor complex. This is what moves food along the digestive tract and can be impaired from previous food poisoning, ANS dysfunction, or other issues. This is a really quick run-down: https://gutivate.com/blog/migrating-motor-complex (just found from a quick google, maybe not the most comprehensive explanation).

There are absolutely natural ways to treat sibo, in fact some natural methods are more effective. However, I will say that rifaximin is probably one of the most gentle abx as it is absolutely not absorbed into the bloodstream. It simply works its way along the small intestine and works solely in that area to remove bacteria. It has been shown to actually improve the growth of beneficial bacteria in the intestine. I took three rounds in a row and while it didn't cure me (because I have other issues) I never experienced any lasting issues or systemic problems. But everyone is different and I totally understand you have to do what feels right for you, because yes it is in the same family as rifampin from my understanding.

Generally you will want to find out if you have hydrogen or methane gas (or both), and that will inform the herbs you take. The tests are usually not too crazy (as far as alternative testing costs). I would highly recommend working with a sibo-literate ND to inform your decisions, but for hydrogen usually people use berberine, neem, and ADP oregano oil (NOT essential oil. ADP is slow release, emulsified oregano pills that won't damage your esophagus). For methane, usually allicin is added in. Dr. Allison Siebecker is an expert ND on the subject, she has tons of free information available. https://www.siboinfo.com/ and here is a podcast where she explains sibo: https://www.youtube.com/watch?v=7deb5iuKT0U
Posted 7/8/2021 1:28 AM (GMT 0)
Have you ever tried natural laxatives like cascara sagrada?
Posted 7/10/2021 2:20 AM (GMT 0)

Cignet said...
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 it.

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.

I've had similar issue and can relate after years of on and off antibiotics use. No easier way to say this bt if I were u if go natural herbal route. This is what I'm doing because my gut gets destroyed when on antibiotics, also adds to the yeast buildup , anxiety and depression. Rebuild your gut first.
Posted 7/10/2021 10:46 AM (GMT 0)
a sibo breath test is reasonably cheap and generally fairly reliable
i forget who i used - but it was both hydrogen and methane and used sucralose as the substrate
that is the type to go for

my partner and i both had severely messed up guts with inflammation, IBS symptoms, food intolerances etc and both came back negative though - so its possible to have messed up guts and still not have a positive Sibo test - something more like general inflammation, dysautonomia, dysbiosis

keto diet helped the most so far

some rounds of berberine, and other gut dysbiosis herbs as part of a pretty comprehensive dysbiosis treatment - together with various probiotics we think helped a little - but made us both feel very rough while on them. but the ketogenic diet was far more effective at controlling symptoms.

the underlying issues are still there though and will flare if i go back to eating carbohydrate foods.

my best guess is some kind of ongoing infection in the gut is continuing to act as a trigger in my case - probably bart - maybe lyme and or mycoplasma
my current treatment regime of buhner lyme and bart herbs together with methylene blue for bart - seems to be helping - but its still slow going.

energy is increasing though. i worked for 5 hours in the garage yesterday.

when my fatigue - which was my worst symptom - was at its worst the things that seemed to help a little - before i discovered the keto diet, was
- eleuthero tincture - the strongest one for HerbPharm 1;2 i think ( later i made my own - but from dried herb and 1:5 so doses needed to be higher)
-D-Ribose - popular in the CFS circle - certainly helped get me a bit more energy to get basis functions done when i was at my worst - like 20% more energy perhaps - dosed at the upper end of the recommended doses - didn't seem to be any downsides

neither were as helpful as keto for us - but at the time anything that gave 10-20% more capacity to cook or clean or shop was a bid deal as we were really struggling to do the basics.
just thought i would path those on - as i know you are struggling and 10% might be the difference between being able to do something to start to dig your way out or not.

if it were me in your position think i would start keto right away though - dysautonomia, gut issues, Lyme - 3 big things it helps with for almost everyone - its not that hard once you get your head around it and doesn't need to be high effort honestly -
i cook a joint about 1x per week and eat cold cuts from that as most of my meat intake - v low effort
i cook eggs for breakfast - not any harder than a microwave meal
i cook steamed veg 1x per day - just a few carrots , green beans = wash, chop, steam = done
the rest is just spooning olives out of a jar or chopping a bit of celery - no big deal

I wish i had started sooner - would have gained back 2 years of my life - and it might give you back enough energy and control to work out what the next forward steps should be.
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