This is a rare subject here, so not sure if I’ll get much response.
First Lyme symptoms appeared in 2002. Took 11 years to get a diagnosis. Got back to about 85% in late 2014 using Bicillin. Was good until June of 2016 when I had heart valve replaced. Haven’t been close to feeling well since.
Around 2013, my kidney function started dropping, looking back at old tests. No doctor mentioned the worsening until I pointed it out in 2017. Have had BP under control since, and kidney function has stayed pretty close to what it was in 2014 (Stage 3)
But it has gone down just a little but still stage 3. The problem is how much it limits recent attempts to treat Lyme, which I’m hoping will also lower autoimmune.
My LLMD wants to take herbs that are mixed. Problem is, two of them contain cat’s claw, which is a no no for kidneys.
Do started cryptolepsis but found even at low doses, it can cause problems in renal cortex and medulla. Both are critical for kidney function. Damage to those can kill kidney cells.
LLMD doesn’t want me on antibiotics because stomach is already a mess, and because so few can be used with kidney disease. I’d try Bicillin at lower dose, but it is facing a severe shortage and is unavailable.
I’m worn down and totally frustrated with situation. I don’t see any answers as I know Borrelia, Babesia and Bartonella need treatment, but can’t afford to lose any more kidney function.
Sorry so long. If, by chance, anyone sees something I’m missing, would love to find out what you think. It’s like being boxed in with no exit c
I'm sorry you're in such a frustrating spot, RW. I know this is something you have been navigating for so long!
I'm curious why your LLMD doesn't want you to take the individual herbs in the mixed formulas, just minus the cat's claw. Could you just by the herbs one by one and take them that way? That's what I've always done. Or are you concerned about the renal toxicity of more than just the cat's claw?
I wonder if a trained herbalist could help navigate which herbs are safe for folks with kidney issues.
Are you able to treat your autoimmune disease?
Lyme, Bartonella, Babesia, Mycoplasma, EBV
Mold, MCAS, POTS, CFS/ME, HPA axis
Herbs, DNRS, diet, nutrients, EOs
I'm curious why your LLMD doesn't want you to take the individual herbs in the mixed formulas, just minus the cat's claw. Could you just by the herbs one by one and take them that way? That's what I've always done. Or are you concerned about the renal toxicity of more than just the cat's claw?
I wonder if a trained herbalist could help navigate which herbs are safe for folks with kidney issues.
Are you able to treat your autoimmune disease?
Lyme, Bartonella, Babesia, Mycoplasma, EBV
Mold, MCAS, POTS, CFS/ME, HPA axis
Herbs, DNRS, diet, nutrients, EOs
Hi RW
I sympathise with how frustrating this must be - its a tough spot to be in.
i think we have discussed it before - but are you sure you cannot figure out how to use the Bicillin from India?
i know you said it was hard to mix or something - but i cant help but feel it must be solvable if its supplied like that for human use for thousands of other people -
i think you also said you were concerned about fake medicine from India - but i can tell you i have had many deliveries now, each containing many different antibiotics, and i have not had a single problem with any of it,
its all made in GMP certified factories for human use - and honestly i think those articles that pop up now an then in the western press are quite likely just propaganda to scare people into paying the high drug prices in the west.
if you are running low on options - i think its worth another go on Bicillin
all the best !
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
I sympathise with how frustrating this must be - its a tough spot to be in.
i think we have discussed it before - but are you sure you cannot figure out how to use the Bicillin from India?
i know you said it was hard to mix or something - but i cant help but feel it must be solvable if its supplied like that for human use for thousands of other people -
i think you also said you were concerned about fake medicine from India - but i can tell you i have had many deliveries now, each containing many different antibiotics, and i have not had a single problem with any of it,
its all made in GMP certified factories for human use - and honestly i think those articles that pop up now an then in the western press are quite likely just propaganda to scare people into paying the high drug prices in the west.
if you are running low on options - i think its worth another go on Bicillin
all the best !
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
Sorry wild. You probably already explored this, but I'm wondering if there's anything you can to increase kidney function. I don't know much about kidney failure. Is your bp too high because you're retaining too much fluid?
I poked around the internet a bit and found a paper on natural treatment for kidney via trying to boost kidney mitochondria. I've tried a number of the things on their list like resveratrol, urolithin A, curcumin, carnitine. https://pmc.ncbi.nlm.nih.gov/articles/pmc10050361/. Not sure if any of these would help you.
I poked around the internet a bit and found a paper on natural treatment for kidney via trying to boost kidney mitochondria. I've tried a number of the things on their list like resveratrol, urolithin A, curcumin, carnitine. https://pmc.ncbi.nlm.nih.gov/articles/pmc10050361/. Not sure if any of these would help you.
Thanks to all three of you for your responses.
Saraeli - Your thought about the mixes is a good one. I don’t like mixes like that. While two may be safe with kidney disease, the third one might be toxic. Think I’m just going to have to figure this out without an LLMD since it’s herbs. Even using cryptolepsis, I have noticed the neuropathy symptoms fire up when treating with it. Herx like reaction, but I’m trying modified citrus pectin as binder. Know you are appreciated.
Garzie - I took some time off from any of this (hence the late response) because I was depressed. At this point, I agree with you the Bicillin from India is worth a shot, literally. I’m getting cbc and comp panel every two weeks, so I can check function. In last two weeks I’ve developed some swelling for first time but tests are all the same as has been for years. Not sure, but I can’t sit here doing nothing.
Bailey -Thanks for the link. I’m having to take time reading it to absorb the technical aspect of what is written. Then I re-read. It’s a take on kidneys I had not seen. Thank you.
My BP is usually 120s over 80s, so pretty much in check. The new swelling, though, has me thrown and as good as the nephrologist I see is, the response from the staff is non- existent. Will let you know how it plays out.
Thanks to all, again.
Saraeli - Your thought about the mixes is a good one. I don’t like mixes like that. While two may be safe with kidney disease, the third one might be toxic. Think I’m just going to have to figure this out without an LLMD since it’s herbs. Even using cryptolepsis, I have noticed the neuropathy symptoms fire up when treating with it. Herx like reaction, but I’m trying modified citrus pectin as binder. Know you are appreciated.
Garzie - I took some time off from any of this (hence the late response) because I was depressed. At this point, I agree with you the Bicillin from India is worth a shot, literally. I’m getting cbc and comp panel every two weeks, so I can check function. In last two weeks I’ve developed some swelling for first time but tests are all the same as has been for years. Not sure, but I can’t sit here doing nothing.
Bailey -Thanks for the link. I’m having to take time reading it to absorb the technical aspect of what is written. Then I re-read. It’s a take on kidneys I had not seen. Thank you.
My BP is usually 120s over 80s, so pretty much in check. The new swelling, though, has me thrown and as good as the nephrologist I see is, the response from the staff is non- existent. Will let you know how it plays out.
Thanks to all, again.
one thing i meant to mention is a while ago i came across several papers in the medical literature showing ketogenic diets could help treat CKD
I was a little surprised - as i hadn't seen it mentioned in that context before - and i know common approaches include other dietary restrictions - so it stuck in my mind - but was deep into something else at the time so didn't look into it further
as i said i didn't read on - but i wonder if its mechanism is linked to lower oxidative stress in the mitochondria of the kidney cells if they run on ketones rather than glucose ( this is the mechanism through which Keto diets help with fatigue and brain function)
i will try to find some links
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
I was a little surprised - as i hadn't seen it mentioned in that context before - and i know common approaches include other dietary restrictions - so it stuck in my mind - but was deep into something else at the time so didn't look into it further
as i said i didn't read on - but i wonder if its mechanism is linked to lower oxidative stress in the mitochondria of the kidney cells if they run on ketones rather than glucose ( this is the mechanism through which Keto diets help with fatigue and brain function)
i will try to find some links
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
this one was in the British Medical Journal ( a well respected publication)
https://drc.bmj.com/content/12/2/e004101
the diagram on page 1 shows the mechanisms the authors believe are at work
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
https://drc.bmj.com/content/12/2/e004101
the diagram on page 1 shows the mechanisms the authors believe are at work
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
Garzie - That is a very unique, interesting take on the effect of, basically, meat consumption in CKD.
Most anything out there stresses lowering animal meat consumption. That is not casting doubt on the study, as there were results to back up their take on it. For years, I’ve been told to lower any animal meat consumption, which is easier said than done.
It has opened my mind to further research on it , and I will also go back and look even more in depth on the study. It shakes the foundation of years of what I’ve been told, which, again, is not doubting its validity.
Thanks for posting.
Most anything out there stresses lowering animal meat consumption. That is not casting doubt on the study, as there were results to back up their take on it. For years, I’ve been told to lower any animal meat consumption, which is easier said than done.
It has opened my mind to further research on it , and I will also go back and look even more in depth on the study. It shakes the foundation of years of what I’ve been told, which, again, is not doubting its validity.
Thanks for posting.
it my not be quite so contradictory as it seems
i think in the the minds of many people who have not gone down the keto rabbit hole yet - keto sits next to carnivore - and so they assume there is lots of meat involved
actually, true ketogenic diets are actually low or moderate protein intake
the big difference to western diets is the main source of energy is fats - rather than carbohydrates - and protein stays much the same.
in fact, in true ketogenic diets the protein intake is actually deliberately limited, as excess protein can be converted to glucose in the liver in a process called Glycogenesis - which raises blood sugar and cancels ketone production - which would of course defeat the purpose of ketogenic diets.
there are actually more studies showing benefits in CKD of giving exogenous ketones ( ketones orally as a supplement ) - so its clear the CKD related benefits or at least some of them are coming from having ketones in the blood stream.
so to summarise - ketogenic diets are
*very low carb ( fully ketogenic diets typically have less than around 20g of carbohydrate from all sources per day)
*moderate protein - typically around 1g per kg of bodyweight or a bit more if you are doing a lot of exercise,
*high fat (from healthy natural sources) and
*lots of fibre ( bulk the stool, slow digestion, carry the fat, feed the microbiome etc )
the diagram on page 1 or 2 or the paper gave a few mechanisms by which it they think it helps CKD - which was interesting
anyway - good luck with your experiments - and let me know if i can help
all the best !
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
i think in the the minds of many people who have not gone down the keto rabbit hole yet - keto sits next to carnivore - and so they assume there is lots of meat involved
actually, true ketogenic diets are actually low or moderate protein intake
the big difference to western diets is the main source of energy is fats - rather than carbohydrates - and protein stays much the same.
in fact, in true ketogenic diets the protein intake is actually deliberately limited, as excess protein can be converted to glucose in the liver in a process called Glycogenesis - which raises blood sugar and cancels ketone production - which would of course defeat the purpose of ketogenic diets.
there are actually more studies showing benefits in CKD of giving exogenous ketones ( ketones orally as a supplement ) - so its clear the CKD related benefits or at least some of them are coming from having ketones in the blood stream.
so to summarise - ketogenic diets are
*very low carb ( fully ketogenic diets typically have less than around 20g of carbohydrate from all sources per day)
*moderate protein - typically around 1g per kg of bodyweight or a bit more if you are doing a lot of exercise,
*high fat (from healthy natural sources) and
*lots of fibre ( bulk the stool, slow digestion, carry the fat, feed the microbiome etc )
the diagram on page 1 or 2 or the paper gave a few mechanisms by which it they think it helps CKD - which was interesting
anyway - good luck with your experiments - and let me know if i can help
all the best !
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
I just got schooled😊. Thanks for that ketogenic information because I was one of those who assumed.
That could open doors to try it. Not feeling too well just taking one drop of crypto (one drop kicks my butt) so will just sit today and research.
Also curious if anyone else is getting warnings not to go to this site when you try to. My all in one at home won’t even let me in here, and now I’m getting warnings on phone.
That could open doors to try it. Not feeling too well just taking one drop of crypto (one drop kicks my butt) so will just sit today and research.
Also curious if anyone else is getting warnings not to go to this site when you try to. My all in one at home won’t even let me in here, and now I’m getting warnings on phone.
yep - i am getting malicious software warnings from google chrome on my desktop
says the site may download harmful software to users computers
it could be that the owners have sunk to new lows - but my guess is its some kind of false positive triggered by a link to an insecure site someone has posted in one of the threads on one of the forums.
google says thats a common cause of false positive malicious software warnings
i would just be extra careful when using the site - eg be careful clicking on links, do not down load anything, do not click "yes" if anything does try to self install
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid
says the site may download harmful software to users computers
it could be that the owners have sunk to new lows - but my guess is its some kind of false positive triggered by a link to an insecure site someone has posted in one of the threads on one of the forums.
google says thats a common cause of false positive malicious software warnings
i would just be extra careful when using the site - eg be careful clicking on links, do not down load anything, do not click "yes" if anything does try to self install
ill since Feb 2015 – Lyme (Armin), Mycoplasma Pn, suspected Bart
Bart now conclusively diagnosed by microscopy see https://tinyurl.com/2eatxxz7
60% recovered - most useful approaches:
=Wholefood Keto Diet
=Exercise – initially walking – now weights too
=Buhner Lyme herbs and co-infect herbs
=Immune modulation- Ivermectin and LDN
=Methylene Blue (Bart)
+T4 and T3 for thyroid