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Posted 12/21/2022 4:47 PM (GMT -5)
I'm currently treating with Jemsek and I am still in the Babesia/Biofilm phase. I'm about to be done with the phase. So far, the results haven't been as great as I was hoping.

Here's my current symptoms. Doing this off the head so prob will forgot some stuff.

* Chronic fatigue
*Constipation, Stomach pain, bloating, stomach spasms
* POTS like symptoms (these have improved some): Strong heartbeat, palpitations, chest pain,
* Joint pain
* Lymph node pain
* Body odor that correlates with increased symptoms. Seems to maybe be when taking Hottunyia?
* Occasional teeth pain, eye pain, ear pain, stabbing head pain
* Fascultations: I get these all over. Especially in feet, legs, and occasionally arms. These are relatively new. I don't remember this at all when I was having success with DSF. In a similar vein, muscle twitches...like involuntarily leg jerk happen occasionally.
* Related to my last symptoms is nerve damage. Sometimes it feels like my body is stuck in fight or flight. My nerve pain isn't bad but sometimes I get it in toes, hands, and arms. I'm guessing the pain in the middle of my hands and arms are nerve pain.
* Occasional shin pain when bad flare
*tremors have actually improved since pre-Jemsek. Still happen occasionally but not as bad.
* With the nerve related fight or flight stuff comes irritability and sensitivity to sounds and others.
* Depending on how I'm feeling and what is going on Post exertional malaise can happen.

So, what the heck y'all? Friday is my last day of this current treatment then I'm off until I see the doctor in a few weeks. In that time I'm going to focus on helping my gut out. Feel like all the meds I'm on have done a number on my stomach. A business that offers IV therapy for a more reasonable cost than my local LLMD recently opened near me. They do IV stuff like Ozone/UBI, Vitamin c, Myers, etc. Thinking about trying that while I'm in between treatment cycles.
Posted 12/21/2022 5:48 PM (GMT -5)

Lymie24 said...
I'm currently treating with Jemsek and I am still in the Babesia/Biofilm phase. I'm about to be done with the phase. So far, the results haven't been as great as I was hoping.

Here's my current symptoms. Doing this off the head so prob will forgot some stuff.

* Chronic fatigue
*Constipation, Stomach pain, bloating, stomach spasms
* POTS like symptoms (these have improved some): Strong heartbeat, palpitations, chest pain,
* Joint pain
* Lymph node pain
* Body odor that correlates with increased symptoms. Seems to maybe be when taking Hottunyia?
* Occasional teeth pain, eye pain, ear pain, stabbing head pain
* Fascultations: I get these all over. Especially in feet, legs, and occasionally arms. These are relatively new. I don't remember this at all when I was having success with DSF. In a similar vein, muscle twitches...like involuntarily leg jerk happen occasionally.
* Related to my last symptoms is nerve damage. Sometimes it feels like my body is stuck in fight or flight. My nerve pain isn't bad but sometimes I get it in toes, hands, and arms. I'm guessing the pain in the middle of my hands and arms are nerve pain.
* Occasional shin pain when bad flare
*tremors have actually improved since pre-Jemsek. Still happen occasionally but not as bad.
* With the nerve related fight or flight stuff comes irritability and sensitivity to sounds and others.
* Depending on how I'm feeling and what is going on Post exertional malaise can happen.

So, what the heck y'all? Friday is my last day of this current treatment then I'm off until I see the doctor in a few weeks. In that time I'm going to focus on helping my gut out. Feel like all the meds I'm on have done a number on my stomach. A business that offers IV therapy for a more reasonable cost than my local LLMD recently opened near me. They do IV stuff like Ozone/UBI, Vitamin c, Myers, etc. Thinking about trying that while I'm in between treatment cycles.

My babesia test was neg but my llmd said because of all my symptoms it's still possible I have it. Your symptoms sound a lot like my "lyme" only I was diagnosed with bartonella so they sound like bartonella symptoms to me or herxing since your on abx I'm assuming. It may just be flare of symptoms as you're breaking down biofilm is what it sounds like too. For me , this is describing my Bart symptoms and how they felt.
Posted 12/21/2022 5:53 PM (GMT -5)
I got the most improvement when I was on the Persisters/Bart protocol.

Not as much changed when I was on Babesia protocol.

I think Bartonella was my dominant infection.
Posted 12/21/2022 5:55 PM (GMT -5)
Pots and fascitulations were two symptoms I had too.
I believe they are from Bartonella.
Also swollen/sore lymph nodes.
Posted 12/21/2022 5:59 PM (GMT -5)
I do think if I make significant progress it'll be during the Bartonella phase of treatment. Therefore, I am def going to go through with that part, but, I just hate the feeling of banging my head against the wall. I have less and less confidence that abx therapy will get me well. Regardless, I am going to continue Jemsek's protocol because I want to be sure and not thinking "What if".
Posted 12/21/2022 6:03 PM (GMT -5)

Lymie24 said...
I'm currently treating with Jemsek and I am still in the Babesia/Biofilm phase. I'm about to be done with the phase. So far, the results haven't been as great as I was hoping.

Here's my current symptoms. Doing this off the head so prob will forgot some stuff.

* Chronic fatigue
*Constipation, Stomach pain, bloating, stomach spasms
* POTS like symptoms (these have improved some): Strong heartbeat, palpitations, chest pain,
* Joint pain
* Lymph node pain
* Body odor that correlates with increased symptoms. Seems to maybe be when taking Hottunyia?
* Occasional teeth pain, eye pain, ear pain, stabbing head pain
* Fascultations: I get these all over. Especially in feet, legs, and occasionally arms. These are relatively new. I don't remember this at all when I was having success with DSF. In a similar vein, muscle twitches...like involuntarily leg jerk happen occasionally.
* Related to my last symptoms is nerve damage. Sometimes it feels like my body is stuck in fight or flight. My nerve pain isn't bad but sometimes I get it in toes, hands, and arms. I'm guessing the pain in the middle of my hands and arms are nerve pain.
* Occasional shin pain when bad flare
*tremors have actually improved since pre-Jemsek. Still happen occasionally but not as bad.
* With the nerve related fight or flight stuff comes irritability and sensitivity to sounds and others.
* Depending on how I'm feeling and what is going on Post exertional malaise can happen.

So, what the heck y'all? Friday is my last day of this current treatment then I'm off until I see the doctor in a few weeks. In that time I'm going to focus on helping my gut out. Feel like all the meds I'm on have done a number on my stomach. A business that offers IV therapy for a more reasonable cost than my local LLMD recently opened near me. They do IV stuff like Ozone/UBI, Vitamin c, Myers, etc. Thinking about trying that while I'm in between treatment cycles.

For got to ask if you're detoxing ? Also taking all the essential vitamin b's have been a great help tbh. I didn't know certain abx can also deplete us of vit b's and I just found this out which makes some sense as I was always vit b deficient, and it really screwed with my CNS and nerves . I've had less herxing and the symptoms you've described as I take mostly essential vitamins and nutrients as well as detox. You should have less symptoms if tou try this hopefully, let us know how this goes once you try it. They have nutritional yeast flakes which you can sprinkle on your food or tongue and will calm your symptoms and central nervous system in a matter of minutes that people swear by it. Using the infrared sauna minimized most of the symptoms you described as well.
Posted 12/21/2022 6:04 PM (GMT -5)

Lymie24 said...
I do think if I make significant progress it'll be during the Bartonella phase of treatment. Therefore, I am def going to go through with that part, but, I just hate the feeling of banging my head against the wall. I have less and less confidence that abx therapy will get me well. Regardless, I am going to continue Jemsek's protocol because I want to be sure and not thinking "What if".

I think you will react to the Bart/Persisters protocol.

Note: dr j says you need to clear out Babs before doing Bart/Persisters.
He treats Babesia with all of his patients.
I think it takes the guessing out of it.
As we all know we can’t rely on testing to show what needs to be treated.
Posted 12/21/2022 6:08 PM (GMT -5)

Girlie said...
I got the most improvement when I was on the Persisters/Bart protocol.

Not as much changed when I was on Babesia protocol.

I think Bartonella was my dominant infection.

I'm going to say I agree with you. Bart were the cause of most of my symptoms which my llmd originally thought was due to lyme or something else. Bart was tough, still is. During bart treatment, that's when I noticed a flare and decrease in symptoms.
Posted 12/21/2022 6:12 PM (GMT -5)
I have to say, while some people have success clearing babs first, others have had success eliminating Bart first. Dr.M says babesia is the easiest to get rid of, while Bart can take months to years . I think it all depends on how much biofilms and toxins are in our bodies though since we are all different . Some ppl have little to no herx on persister protocols, while ppl like me herx miserably even when I add the smallest thing to my protocol. I have a pretty clean diet but again it's probably about detox as well and how our body is pushing these toxins out rather than the actual protocol. I hope we all get better soon !
Posted 12/21/2022 7:49 PM (GMT -5)
Constipation, bloating, muscle twitches, and fight-or-flight irritability seem like adrenal problems and HPA stress. Have you had your acth/cortisol tested?

Stomach pain and nerve pain can be due to bartonella die off. Swollen lymph nodes is also likely bart.

Muscle and joint pain, probably borrelia die off. I also got jaw pain from borrelia die off.

Smell can be a lot of things. Bartonella had an ammonia and asparagus like smell. Borrelia smelled sour and buttery (diacetyl?). Sometimes I would get a smell like mildew or camembert, which I assume was mold.
Posted 12/21/2022 8:50 PM (GMT -5)
it all sounds like standard lyme/bart/ babs type symptoms stuff to me Lymie

i didn't see anything that jumped out and said " somethings off here"

many people are just slow to respond to treatment initially - especially if they have been ill for years before

babs and bart are both attributed to be the cause of slow response to treatment - and continuous herxing

bartonella seems to be a typical cause for this - hence some people are on either very long protocols - 2 years of rifampicin and clarithromycin with Dr M - or hardcore persister protocols with Dr J

but more recently - there i some interesting and very compelling evidence presented by Dr Lindner ( not a LLMD - but spoke at ILADS) explaining that the USA has been confused about Babesia
that what the CDC acknowledges as Babesia is mostly B. Microttii - which is generally pretty easy to treat or even often self resolves -
whereas what people are coming into his clinic with - is Babesia Odocoilei - which is much much harder to kill and makes people chronically sick as the norm -but rarely shows up on the FISH or IFA tests - and just occasionally triggers a positive response in tests for Microttii or Duncani (the only 2 that are tested for in most labs today)

anyway - if he is right - this may account for why different doctors think bart or babs is the bigger issue - deepening on which Babesia they are seeing

hang in there - if any conventional ( ABX based ) treatment is going to get you well - i think it will be Dr J
Posted 12/21/2022 8:52 PM (GMT -5)

Quin said...
Constipation, bloating, muscle twitches, and fight-or-flight irritability seem like adrenal problems and HPA stress. Have you had your acth/cortisol tested?

Stomach pain and nerve pain can be due to bartonella die off. Swollen lymph nodes is also likely bart.

Muscle and joint pain, probably borrelia die off. I also got jaw pain from borrelia die off.

Smell can be a lot of things. Bartonella had an ammonia and asparagus like smell. Borrelia smelled sour and buttery (diacetyl?). Sometimes I would get a smell like mildew or camembert, which I assume was mold.

Thanks for your reply.

I had my plasma ATCH and cortisol tested a few months ago and they both came in the middle of the range. I also had blood ammonia tested recently and that came back fine. I cook asparagus quite a bit. That's not how I would describe my smell. The smell is much, much worse lol.
Posted 12/21/2022 8:59 PM (GMT -5)

MedicalNerd said...

Lymie24 said...
I'm currently treating with Jemsek and I am still in the Babesia/Biofilm phase. I'm about to be done with the phase. So far, the results haven't been as great as I was hoping.

Here's my current symptoms. Doing this off the head so prob will forgot some stuff.

* Chronic fatigue
*Constipation, Stomach pain, bloating, stomach spasms
* POTS like symptoms (these have improved some): Strong heartbeat, palpitations, chest pain,
* Joint pain
* Lymph node pain
* Body odor that correlates with increased symptoms. Seems to maybe be when taking Hottunyia?
* Occasional teeth pain, eye pain, ear pain, stabbing head pain
* Fascultations: I get these all over. Especially in feet, legs, and occasionally arms. These are relatively new. I don't remember this at all when I was having success with DSF. In a similar vein, muscle twitches...like involuntarily leg jerk happen occasionally.
* Related to my last symptoms is nerve damage. Sometimes it feels like my body is stuck in fight or flight. My nerve pain isn't bad but sometimes I get it in toes, hands, and arms. I'm guessing the pain in the middle of my hands and arms are nerve pain.
* Occasional shin pain when bad flare
*tremors have actually improved since pre-Jemsek. Still happen occasionally but not as bad.
* With the nerve related fight or flight stuff comes irritability and sensitivity to sounds and others.
* Depending on how I'm feeling and what is going on Post exertional malaise can happen.

So, what the heck y'all? Friday is my last day of this current treatment then I'm off until I see the doctor in a few weeks. In that time I'm going to focus on helping my gut out. Feel like all the meds I'm on have done a number on my stomach. A business that offers IV therapy for a more reasonable cost than my local LLMD recently opened near me. They do IV stuff like Ozone/UBI, Vitamin c, Myers, etc. Thinking about trying that while I'm in between treatment cycles.

For got to ask if you're detoxing ? Also taking all the essential vitamin b's have been a great help tbh. I didn't know certain abx can also deplete us of vit b's and I just found this out which makes some sense as I was always vit b deficient, and it really screwed with my CNS and nerves . I've had less herxing and the symptoms you've described as I take mostly essential vitamins and nutrients as well as detox. You should have less symptoms if tou try this hopefully, let us know how this goes once you try it. They have nutritional yeast flakes which you can sprinkle on your food or tongue and will calm your symptoms and central nervous system in a matter of minutes that people swear by it. Using the infrared sauna minimized most of the symptoms you described as well.



I've tried pretty much every detox method in the Lyme zeitgeist besides coffee enemas. I have an infrared sauna. I take epsom salt baths. I exercise vigorously when I can. I've done biotoxin binders. Alka-Seltzer gold. Burbur-Pinella, glutathione, cold showers the list goes on. Exercise, sauna, and cold showers clearly help me, but the results are transient. I can feel good after a hard exercise session, but everything will come flooding back a couple of hours later.

I had my B6 and B12 tested a few months ago and my results came back higher than the reference range. I take a multivitamin and eat a whole foods diet almost exclusively. I doubt nutrient deficiency is my issue.

My blood copper has came back slightly below the normal range a few times.

I've never tried nutritional yeast. I'll look into that. Thanks
Posted 12/21/2022 9:06 PM (GMT -5)

Garzie said...
it all sounds like standard lyme/bart/ babs type symptoms stuff to me Lymie

i didn't see anything that jumped out and said " somethings off here"

many people are just slow to respond to treatment initially - especially if they have been ill for years before

babs and bart are both attributed to be the cause of slow response to treatment - and continuous herxing

bartonella seems to be a typical cause for this - hence some people are on either very long protocols - 2 years of rifampicin and clarithromycin with Dr M - or hardcore persister protocols with Dr J

but more recently - there i some interesting and very compelling evidence presented by Dr Lindner ( not a LLMD - but spoke at ILADS) explaining that the USA has been confused about Babesia
that what the CDC acknowledges as Babesia is mostly B. Microttii - which is generally pretty easy to treat or even often self resolves -
whereas what people are coming into his clinic with - is Babesia Odocoilei - which is much much harder to kill and makes people chronically sick as the norm -but rarely shows up on the FISH or IFA tests - and just occasionally triggers a positive response in tests for Microttii or Duncani (the only 2 that are tested for in most labs today)

anyway - if he is right - this may account for why different doctors think bart or babs is the bigger issue - deepening on which Babesia they are seeing

hang in there - if any conventional ( ABX based ) treatment is going to get you well - i think it will be Dr J

Thanks for your response. I've never heard of that Babesia strain. Very interesting.

My issue is I'm not recently sick. My tick bite was in 2015. My first antibiotic was in Jan 2016. I was off and on Doxy that whole year. In Jan 2017 I had my first LLMD appt. I have been off and on, but mostly on treatment since then. I took a break after Disulfiram for several months and everything fell apart again. Fell apart as in two ER trips within a couples months type of thing.

Now I'm treating with Jemsek and progress seems slow to non-existent and the reality is when Jan of 2023 hits I will have been off and on antibiotics for SIX years and to be honest these treatments, and the illness in itself, make me miserable. I just wonder if I'm banging my head into the wall over and over again. I was a few months from 29 when I first got bit and now I'm 36 lol. I'm wondering when I should pull the plug and try different types of treatments.

I'm with you about Jemsek. I went to him for a reason. I'm def going to complete the core of his protocol, but my confidence is fading. We shall see what happens.
Posted 12/22/2022 1:52 AM (GMT -5)
As I read through your initial post, my immediate thought was many of the symptoms suggest bartonella. I also thought adrenals. If I remember right, Dr M pays a lot of attention to adrenal support because Rifampin (?) really affects the adrenals, and he wants to get patients set up properly so they can tolerate the treatment. So, you might want to look into that as you finish this phase of the treatment.

These made me think of bartonella:

POTS like symptoms (these have improved some): Strong heartbeat, palpitations, chest pain,
* Joint pain (could be Lyme or bartonella; if small joints or tendon pain, then bartonella is likely the culprit)
* Lymph node pain (classic bartonella symptom)
* Body odor that correlates with increased symptoms. Seems to maybe be when taking Hottunyia? (Quin talks about body odor related to bartonella, but I don’t recall ever reading about it in any doctors’ writings or articles)
* Occasional teeth pain, eye pain, ear pain, stabbing head pain
* Fascultations: I get these all over. Especially in feet, legs, and occasionally arms. These are relatively new. I don't remember this at all when I was having success with DSF. In a similar vein, muscle twitches...like involuntarily leg jerk happen occasionally.
* Related to my last symptoms is nerve damage. Sometimes it feels like my body is stuck in fight or flight. My nerve pain isn't bad but sometimes I get it in toes, hands, and arms. I'm guessing the pain in the middle of my hands and arms are nerve pain.
* Occasional shin pain when bad flare (another classic bartonella symptom)
*tremors have actually improved since pre-Jemsek. Still happen occasionally but not as bad.
* With the nerve related fight or flight stuff comes irritability and sensitivity to sounds and others.
———-
I have had many of the above symptoms at some point, if only briefly or randomly. I only have positive tests for Lyme and Ehrlichia, but I have had striae and stretch marks since childhood and have occasional flares of scratch marks. I consider all those skin manifestations pretty definitive for bartonella.

I saw your list of detox methods. What about TUDCA. I found it the most helpful.

If you are dealing with bartonella coming to the forefront, you might want to use Serrapeptase/nattokinase/lumbrokinase. Dr M seems to consider them essential for bartonella patients, as does Dr AC (loski sees her). Better Health Guy has interviews with Dr AC where she discusses her treatment of hypercoagulation for almost all of her bartonella and mold patients.

NOTE: Here’s a link to that interview.
https://www.betterhealthguy.com/episode123

Post Edited (WalkingbyFaith) : 12/21/2022 11:03:19 PM (GMT-8)

Posted 12/22/2022 2:24 AM (GMT -5)

Lymie24 said...
I also had blood ammonia tested recently and that came back fine. I cook asparagus quite a bit. That's not how I would describe my smell. The smell is much, much worse lol.

The bartonella smell... I would describe it as vegetable-like, a bit like broccoli or asparagus, but much worse. I think it smells like sewage or swampland.
Posted 12/22/2022 10:41 AM (GMT -5)
Quin,

“The bartonella smell... I think it smells like sewage or swampland.”

I have times when my poop smells like sewage. Are you talking about the smell coming from urine, feces, or body odor?

I don’t have body odor that I can tell.
Posted 12/22/2022 4:32 PM (GMT -5)

Lymie24 said...
[

Thanks for your response. I've never heard of that Babesia strain. Very interesting.

the babesia odecoilei species has been documented for quite a while now - in USA and Europe.

its main natural host is white tailed deer

their population has been booming in few decades so the theory is so is their babesia species - and exposure of humans to that organism has therefore gone up proportional to the deer numbers.

Lindner's Preso is worth a read - see here :
https://hormonerestoration.com/files/babesia%20odocoilei%20lindner.pdf

he said something over 90% of the patients in his practice with fatigue were positive for it via capillary blood smear
Posted 12/22/2022 9:19 PM (GMT -5)
News reports here in Michigan, USA claim deer hunter population is dwindling. Doesn’t sound good for controlling spread of LD.
Posted 12/23/2022 1:16 AM (GMT -5)
WBF: All three (sweat, urine, feces) but especially the feces. Bart herx would give me diarrhea and it smelled awful. Not just the smell of fresh poo, the bathroom smelled like someone had left a mess in there for days.
Posted 12/23/2022 11:39 PM (GMT -5)

MargaritaLyme said...
News reports here in Michigan, USA claim deer hunter population is dwindling. Doesn’t sound good for controlling spread of LD.

I'm in Michigan and just shot a doe three nights ago. Baiting ban a few years ago to stop the spread of Chronic Wasting Disease probably didn't help hunter numbers plus the younger generation aren't as interested in hunting.
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