Have Developed More Muscle Pain

Sorry to hear about this experience- Doing anything different? My last big Bartonella die off came with those types of symptoms. You can do some blood work to check your urea and creatinine levels to get more clues if you doubt this is from die off.

sorry to hear you are going through this RW

i am also sorry to say that from the outside looking in that it seems v unlikely to me that LDN or very carefully dosed herbs or any of the other "playing around the edges type things" people with lyme often do, are going to suddenly make a big difference in what's going on in your case.
you are so sensitive i think these are just going to lead to more flares and frustration

so i think you need to think of more radical approaches at this stage

i know that might generate concerns around risks - but from a logical perspective - there are equal or greater risk of not doing anything / staying on your current path - as that doesn't seem to be controlling the illness adequately - and these conditions can progress. So the "do nothing option" (or stay as you are option) has its own risks.

i am sorry if this seems harsh, blunt or uncaring - i assure you that's not the case - i really do want to help - and i think the best way to do this is to encourage you to assess things head on - then add up your options with cool headed logic and move forward. and i think to do that effectively we have to be very blunt and honest with ourselves - not be drawn into what we would like to be true - or loops of indecision.

of course, it would be nice if a tiny dose of this herb or that brought tremendous relief - but that has not been your experience this far - and so i think more of the same is unlikely to help.

the reality is you have tried all the main approaches that seem to help most people - but cannot tolerate them.

so i mean this as a positive message to encourage you to take the next step towards something else that could help - but as you have tried the more common treatment's - i think you are at the point where you have to step outside the well trodden paths - as you are not a typical patient and what works for others has not worked for you. this is unfortunate - and we would like it to be different - but this is the reality you are facing.

for clarity - i don't mean go off-piste altogether and start worshiping crystals or anything random (no offence to anyone who does that!)
i mean something targeted to your particular circumstances
by which i mean i think something has to be done to dramatically change the dysregulated immune system's responses - so that in time things calm down enough to treat infections without dramatic flares

1, as i have mentioned - if it were me i think the Bruce Patterson's test and approach has some promise in this regard an is probably what i would try first if i were in your shoes - even though there are not large scale randomised controlled trials yet - it is at least targeting the overactive immune response - they have done some human trials and early data it seems v encouraging - they have also treated tens of thousands of patients - so you would not be an super early adopter - its not megabucks and the drugs are safe.
of course it would be nice if they were further along - with large scale RCT trials - but this is where they are - and you may not wish to wait 2 years.

2, or maybe consider a radical commitment to DNRS for a couple of months - in terms of time and effort
or some other mind body technique that some super sensitive people have reported success with.
i don't know much about it - but we do have members who were ultra sensitive to everything - and said it was the main thing that turned their case around - saraeli for instance - its also something completely non Pharma - and so kidney safe

3, another idea is bee sting therapy - i don't know much about it other than buhner wrote about it and others on here have has success with it - i think some of them also struggled with abx and herbs. if i recall correctly it also works by modulating the immune system - ie on target for your issues - so i put it in here as perhaps something to dig into - maybe find a practitioner and have a chat with them

4, DCD was also in a similar position - with hyper reactivity - inability to tolerate abx - he has travelled some conventional and unconventional paths in his own quest - did he have any ideas regarding immune specialist doctors ?

5, Dr Robert Mozeyani was a rheumatologist - ex NIH - now also treats tick born infections and speaks at ILADs conferences etc - but as a rheumatologist he should be versed in both auto-immunity and tick born infections - including mixed cases. which sounds like a pretty good match
i read he has experience in using steroids to control immune flares during treatment - so is a possible more mainstream option for you to try and contact - see if he thinks he can help.

anyway hope there is something useful there - but the main point of my message is to support and encourage you to grasp the nettle and take some big steps forward in a brand new direction - even though it can be scary, i think that's what you are faced with at this point.

maybe others here will have some ideas to add to the list ???

finally my email is listed in my profile - so please do reach out to me if i can help in any way one to one

all the best!

RW, forgive me if you have explained this, but what exactly is wrong with your kidneys? Do you know the cause of the high creatinine? I just ask because it can mean several different kidney issues, but also can happen from other causes in people with healthy kidneys, and I don't recall what your particular case involves.

I hope that it's easier to make a plan once you have the next echocardiogram.

No one here is going to judge you for finding chronic illness scary! That's perfectly reasonable!

I haven’t read the last few posts.

Re:your kidneys.
Is it possible that Lyme and CO’s are making it worse?
- not only the abx that you take?

When you take abx - how bad is your kidney function?

When I was on the really heavy protocol with dr J I had to do blood tests once a month after the cycle.
My kidney function would drop a lot!
Trying to remember the number it dropped to - I’m thinking it was 50 something which scared me but I’d retest a week or two after and it would come up again.

Have you tried a pulsed protocol?
Like one week on and three weeks off?

Have you tried Rifabutin - is it one that is hard on the
Kidneys?

running wild said...
Have no idea which direction to take. Same old problem. Infection vs. autoimmune. Shortness of breath probably from heart. Or kidneys.

No clue. No answers. No doctor who deals with it all.

Hi RW, and everyone. It's been a while. Garzie hello my friend, saw where you asked how I'm doing.

RW, I think the shortness of breath is likely autonomic. I too have developed this, quite severely. If I try to exercise, I develop severe POTs/PEM (post exertional malaise) within 24hrs. It's awful, I get dizzy, lightheaded, weak, cant catch my breath. It literally feels lime I'm dying. t's starting to happen even when I dont exercise now.

This is classic autonomic neuropathy. You have small fiber neuropathy. The two go hand in hand. The autonomic nerves are the same type of unmyelinated c-fiber as the sensory nerves. They control heart rate and vasoconsriction. Because the ANS cant control vasoconstriction to constrict the blood vessels to force blood to the top half of your body, the heart pumps overtime to try to do it. When you have a flare you might feel like you ran a marathon from climbing the stairs. The body will also release adrenaline, which is a sympathetic signal to vasoconstrict. This is why you feel so anxious.

Dysautonomia and autonomic neuropathy are classic sjogrens. It's literally the number 1 cause of immune mediated neuropathy per Harvard/Mass General. Many things can trigger it, lyme included, but I suspect the vast majority of cases have nothing to do with Lyme. And once it starts, it's insidious. I do not believe lyme is driving your symptoms. I would bet every dollar in my bank account that that is not the case. Sjogrens is driving the symptoms now, and you are classic sjogrens in your systemic presentation, connectivue tissue symptoms, neurologic complictions and hypersensitivity. Remember, the ANS controls literally every bodily function that you dont consciously control yourself, so when it is out of whack, very weird things happen. I think you are just poking a hornets nest every time you try an intervetion that increases inflammation or immune activity.

To answer Garzie's question on how I'm doing and if I found anything that helps, and also illustrate that I share your same exact frustration in autoimmune and being so dang sensitive to everything and just getting dug deeper, Ill update the forum on whats been going on with me for the past few years since I've been on here less:

In some ways I'm better, in other ways I'm much worse. Unfortunately in 2023 I developed POTs as I mentioned, the neuropathy spread to my autonomic nerves, which has been slowly getting worse. This also lead to erythromelalgia and interstitial cystitis, two other forms of autonomic dysfunction. I also have the enthesitis/spondyloarthopathy since 2021. So I'm dealing with a lot.

I have stopped any treatment that triggers me. It just makes me much worse. Unfortunately I came off the ketogenic diet, and coming off did increase my flares. I just couldnt handle eating like that every day with no joy ever.
I now eat healthy during the week, and allow myself cheat meals on friday and saturday night.

I've stopped IVIG. Unfortunately I'm one of the 30-40% that doesnt respond. A few of my friends have gotten their lives back from it, near 0 symptoms. I wish them well, but I'm jealous. Some drs claim it works for 90%. No way, i think it's 30-40% who dont respond.

The only things I've found that move the needle for me are peptides. TB-500 has beat back my enthesitis. I still deal with it from time to time, but it's a 2/10 issue instead of a 7/10 now. I also started autologous stem cellls 2 months ago, which seems to have helped the arthritis as well. Between the two, I can now very recently use some supplements that used to drive my arthritis crazy. I can now handle ARA-290 again. This is the only thing keeping me from suicide. It takes my pain way down and I feel feeling come back to my feet.

I believe that I have neuro-inflammation in my CNS as well. Most cases of neuropathy are not as severe painwise as mine. Many w/ SFN report numbness and some mild pain, but not like what I have. There is ample evidence that the inflammation can spread to the spinal cord and brain post peripheral nerve injury, causing a central sensitization. This has likely happened for me. This is probably why I get those glutamate induced migraines as well. ARA-290 calms these symptoms.

This is a paper anyone w/ neuro-inflammation, nerve pain or central sensitization should read and look into, and consider trying ara-290.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5741312/

So long story short to answer how I'm doing, in some ways my sensory neuropathy feels better, probably due to ARA-290. And the enthesitis has improved, but the toll of accumulated damage, inflammation and new symptoms like pots and erythromelalgia over the years makes me think on some days I'm much much worse as I'm managing multiple symptoms now. I'm also just worn out from 4-5y of this.

So basically I've resisted for so long going on Immune suppression. I've tried every treatment under the sun, from functional medicine interventions early on like antibiotics to herbs to gut protocols and extreme diets. IVIG for 2y. More recently, I've done HBOT, extensive peptide therapy, autologous stem cells. Some of these things, like the peptide therapy and possibly the stem cells, have basically held me together, but I'm like a broken and damaged man pieced and stitched back together by these interventions.

There are a couple more things I'm goin to try (I've been introduced to a cutting edge US physician and cell therapy expert cultivating his own umbilical cord stem cells and nasal exosomes that will cross the BBB, so I may try these first), but I'm prepared for the immune suppresion. I should have done this a long time ago, before all this damage accrued. I will request rituximab when I see my rheum in march. There is a high chance of success, I've spoken w/ my people w autonomic and sensory neuropathy who it halted their disease.

My point is, we are in the same boat w/ the sensitivity and immune mediated neuropathy, and as garzie said, you've tried herbs and antibiotics going on 10y now. You are too sensitive. Maybe you should consider the same, and if your neuro wont do it, there has to be one who is willing to.

Post Edited (dcd2103) : 1/18/2024 10:43:21 AM (GMT-8)

Forgot to respond to Girle and Garzie. My apologies.

Girlie - The nephrologist I see has marked off many things I can take, with Rifabutin. And I have always wondered if Lyme is playing a part in kidneys as autoimmune was ruled out by kidney biopsy. May have been HBP, but that has been pretty much under control for a few years now.

I remember reading when your GFR dropped that lo, and yours were in the 50s. I haven't been taking much or any antibiotics now for quite a while.

Garzie - I have also wondered if it is from Bartonella (the heart valve). But back when I was feeling real good and tests were coming back negative for all Lyme-assocatied problems, still had the aneurysm. Maybe it started problems and it has grown since. What frustrates me is when I had the original aortic aneurysm repaired in 2016, the doctor had a chance then, while my heart was out, to repair what was then the aneurysm that is a problem now in the sinus of valsalva. It is a rare valve problem, with less than 0.09 % of people ever having one.

The caridologist I see now can't understand why it was fixed then, either. Does no good to look back, though. Just really want those echo measurements back.

Emma - As you might have noticed, I am very into lists as well, so have been enjoying yours!

For POTS, I found that salt was helpful, but I had to eat way more of it than I realized initially. I bought big pink hunks of Himalayan salt, kept one on the table next to where I spent most of my day, and just licked it often! Fortunately I like salt.

My dysautonomia specialist gave me the advice to cut back on my water intake, explaining that too much water dilutes electrolytes and reduces blood volume. In my case, drinking loads of water - the advice I'd been given by others - was counterproductive. She said I should be peeing every two hours (not more often than that), and my pee should not be clear. She suggested the formula: ounces of water to drink per day = weight in pounds divided by 2 (plus more if you sweat from exercise, sauna, hot weather, etc.). So as a 120-pound person, I aim for 60 ounces of water per day unless I am losing water through sweating. (Now that I no longer experience POTS symptoms, I can drink much more water without an issue.) So odd to be told I was over-hydrating!

Around the time I took that advice, I was also starting DNRS limbic system retraining, which lists POTS as one of the conditions it helps. Between the reduction in water, increase in salt, and DNRS, my POTS symptoms stopped for good. If I check my heart rate and BP these days (four years later) during triggering times of stress, low barometric pressure, or dehydration, then sometimes I technically experience POTS (high heart rate when standing, low BP) but I have no symptoms anymore (not lightheaded, tired, dizzy, etc.).

I also found that anything that helped my nervous system in general was helpful in reducing POTS symptoms - tapping, meditation, guided visualizations, vagus nerve toning, breathwork, yoga, etc.