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Posted 6/17/2017 8:06 PM (GMT 0)
It's been a while since I have posted. I've been doing better overall, but I still struggle with symptoms almost everyday. I am on the Jemsek protocol and take medicine two weeks, then am off for two weeks. I am 6 months into treatment. I am finding that the days I am not on meds...I feel like I need them. I get numbness in my temples and an achy/burning feeling in my scalp.

My question is, do people generally feel better on or off meds on the jemsek (or similar protocols) and is that a good or bad sign?
Posted 6/17/2017 8:23 PM (GMT 0)
I've never done the jemsek, so hopefully you'll get some intelligent answers! lol.

But from a personal observation and what I've read, pulsing is controversial, and with a 2 week on and off gap, even more so. I don't know what is in your protocol or how long it stays in your system so I can't say more about that other than if you feel like you need them, (or something), I don't see what the harm is in finding something to deal specifically with your off time symptoms.

That being said, it's possible and very probable your off time symptoms are herxes and you may just need to address those with area specific de-toxing, support.

Are you taking anything that helps remove ammonia build up from toxins in the head? That's where it often congregates.

Also try manual lymph node massage drainage on your head and neck areas. Video instructions on youtube.

Hope you get to feeling better!! Head issues are difficult to tolerate!
Posted 6/17/2017 9:05 PM (GMT 0)
Brain, I'm not on Jemsek but I do the two week on/off pulsing protocol. I have also in the past done straight therapy & I find that pulsing is harder in my experience. The two weeks off is intended for the microbes to become active/out of hiding to replicate so that they can be targeted when abx are restarted so you will feel worse while off but I've been treating for a year and the time off has gotten better.

When you think about it, 6 months of 2 week on/off pulsing really amounts to just 3 months of actual abx & that is not considered very long for these infections. The pulsing protocol is supposed to, in the long run, be more effective (according to studies) than straight therapy which is what I am hoping for since I've relapsed after straight therapy so here's hoping.
Posted 6/17/2017 10:03 PM (GMT 0)
The only thing to clear my scalp pain was full bee stings to the dome . It has helped brain fog emmensly. I do like jemesek pulsing theory but on reading will there be cake latest posts after 2+ yrs and $ galore she is still in some kinda shape .no cake for her anytime soon
Posted 6/17/2017 10:10 PM (GMT 0)
https://youtu.be/OO1Wp52vt2o fungal
Posted 6/17/2017 10:11 PM (GMT 0)

Octobrsky13 said...
The pulsing protocol is supposed to, in the long run, be more effective (according to studies) than straight therapy which is what I am hoping for since I've relapsed after straight therapy so here's hoping.

I don't believe that there are any humans studies which show this. These studies were done in a test tube and not even in animal populations. This is more of a clinical belief/theory based on Jemsek's observations in his patient population.

My clinic has a different set of beliefs and observations. They believe on rotating abx, but having some type of coverage every day.
Posted 6/17/2017 11:03 PM (GMT 0)
No I haven't. Why are they controversial? How do I remove ammonia build up from toxins in the head?

julymorning said...
I've never done the jemsek, so hopefully you'll get some intelligent answers! lol.

But from a personal observation and what I've read, pulsing is controversial, and with a 2 week on and off gap, even more so. I don't know what is in your protocol or how long it stays in your system so I can't say more about that other than if you feel like you need them, (or something), I don't see what the harm is in finding something to deal specifically with your off time symptoms.

That being said, it's possible and very probable your off time symptoms are herxes and you may just need to address those with area specific de-toxing, support.

Are you taking anything that helps remove ammonia build up from toxins in the head? That's where it often congregates.

Also try manual lymph node massage drainage on your head and neck areas. Video instructions on youtube.

Hope you get to feeling better!! Head issues are difficult to tolerate!

Posted 6/18/2017 12:20 AM (GMT 0)
There is another reason for pulsing (according to Dr. J.)

On the 'off' weeks - it allows the immune system to 'kick' in.
When antibiotics are being used - the immune system doesn't need to do the work.


It's not considered controversial - maybe it was many years ago? But not now...many LLMD's are doing the pulsing...and Dr. J. has been doing it for many years now.

I find the pulsing much more tolerable. The 'off' weeks are a good gauge on what your baseline is.

Also, I like to load up on my probiotics and other support supplements without having to worry about my antibiotic schedule.
Posted 6/18/2017 12:32 AM (GMT 0)
Jemsek has been treating folks with lyme/co's for decades. He currently sports 3000 ACTIVE patients if you can wrap your head around that. There's no one actively practicing who has more clinical knowledge and experience with those ill than him and Dr. H. He touts a 95% success rate and typical treatment is 9-15 months.

Jemsek takes things very slowly and lets his protocols due the work. That's why you don't go to his clinic more than 2-3 months at a time. Some LLMD's (like my old one) was switching stuff around on me daily and frankly I thought it was the right approach but it wasn't, at least for me.

He strongly believes Babesia is almost always the blocker when you can't get well due from Lyme and the other co-infections. I've been on his protocol and going into week 16 or 3 1/2 months and this past week was the best one I've had while on an abx week. I'm dealing with a largely asymptomatic babesia infection and it took me that long to beat these ******s down where I can feel something lighten up from the other infections I've been dealing with for most of my symptoms.

As Girlie said the immune system has to eventually take over the reins and keep the bugs in check. If you don't give it a chance because you're on daily abx (which suppress immune function) its harder to achieve.

Believe me I think people get well in many ways but for those who've been on daily abx for 18+ months and mixed it up and can't get things under control you may want to consider Dr. J's unique protocol.

He says people try to copy it all the time but inevitably screw it up because they don't know how to adjust it based on patient feedback.
Posted 6/18/2017 2:06 AM (GMT 0)
Thanks for the feedback. What do you mean my off weeks are a gauge of my baseline? I am feeling a bit discouraged, because I used to feel better on my off weeks...but now on this third protocol round i feel worse. Does this mean I'm going backwards?

Also, I take all my supplements, whether on antibiotics or not. Should I just be taking them on off weeks? I wasn't aware they interacted. (except probiotics right after antibiotics)


Girlie said...
There is another reason for pulsing (according to Dr. J.)

On the 'off' weeks - it allows the immune system to 'kick' in.
When antibiotics are being used - the immune system doesn't need to do the work.


It's not considered controversial - maybe it was many years ago? But not now...many LLMD's are doing the pulsing...and Dr. J. has been doing it for many years now.

I find the pulsing much more tolerable. The 'off' weeks are a good gauge on what your baseline is.

Also, I like to load up on my probiotics and other support supplements without having to worry about my antibiotic schedule.

Posted 6/18/2017 2:32 AM (GMT 0)

Brainzap545 said...
Thanks for the feedback. What do you mean my off weeks are a gauge of my baseline? I am feeling a bit discouraged, because I used to feel better on my off weeks...but now on this third protocol round i feel worse. Does this mean I'm going backwards?

Also, I take all my supplements, whether on antibiotics or not. Should I just be taking them on off weeks? I wasn't aware they interacted. (except probiotics right after antibiotics)

No, you're not going backwards. I think You aren't at that point yet where you start to feel better on the 'off' weeks.
I have been treating Babesia for 3 1/2 months (almost) I am just starting to see a pattern - and on my week off I do have a few more good days than than when I do on the "on" weeks. And my bad days aren't as bad in the "off" days.
I have been herxing on the "on" weeks so the "off" weeks I generally feel better for some of the days.. but not all days.
I do take my supplements during the "on" weeks. But it's much easier to load up on probiotics and binders without having to space it out - leaving a few hour window on either side of abx.



Sounds like maybe you have a lot of toxins from the "on" week that you're dealing with throughout your "off" week.

As time goes on, you should start to see a pattern.

Have you treated Bartonella yet?

** You don't want to take the probiotics right after the abx. You should wait two hours after the abx before taking probiotics
Posted 6/18/2017 2:35 AM (GMT 0)
Thanks for the info! I am happy to be seeing him. I hope I get better.

Rikky1 said...
Jemsek has been treating folks with lyme/co's for decades. He currently sports 3000 ACTIVE patients if you can wrap your head around that. There's no one actively practicing who has more clinical knowledge and experience with those ill than him and Dr. H. He touts a 95% success rate and typical treatment is 9-15 months.

Jemsek takes things very slowly and lets his protocols due the work. That's why you don't go to his clinic more than 2-3 months at a time. Some LLMD's (like my old one) was switching stuff around on me daily and frankly I thought it was the right approach but it wasn't, at least for me.

He strongly believes Babesia is almost always the blocker when you can't get well due from Lyme and the other co-infections. I've been on his protocol and going into week 16 or 3 1/2 months and this past week was the best one I've had while on an abx week. I'm dealing with a largely asymptomatic babesia infection and it took me that long to beat these ******s down where I can feel something lighten up from the other infections I've been dealing with for most of my symptoms.

As Girlie said the immune system has to eventually take over the reins and keep the bugs in check. If you don't give it a chance because you're on daily abx (which suppress immune function) its harder to achieve.

Believe me I think people get well in many ways but for those who've been on daily abx for 18+ months and mixed it up and can't get things under control you may want to consider Dr. J's unique protocol.

He says people try to copy it all the time but inevitably screw it up because they don't know how to adjust it based on patient feedback.

Posted 6/18/2017 2:41 AM (GMT 0)
Well this is my third round of meds...at the end of my last round I was doing so well and my NP at Jemsek told me she was so happy with my progress. I felt pretty good almost all the days of my off weeks, and about half of the days during the on.

Now that I started this round it has been rough and I felt worse on my off weeks (which is a change from the trend I had noticed.) I am on meds more days than I ever had been before so I may have more die off as a result.

Are there any good supplements to help with ammonia? Is that likely my issue as most of my symptoms are head symptoms?

Girlie said...

Brainzap545 said...
Thanks for the feedback. What do you mean my off weeks are a gauge of my baseline? I am feeling a bit discouraged, because I used to feel better on my off weeks...but now on this third protocol round i feel worse. Does this mean I'm going backwards?

Also, I take all my supplements, whether on antibiotics or not. Should I just be taking them on off weeks? I wasn't aware they interacted. (except probiotics right after antibiotics)

No, you're not going backwards. I think You aren't at that point yet where you start to feel better on the 'off' weeks.
I have been treating Babesia for 3 1/2 months (almost) I am just starting to see a pattern - and on my week off I do have a few more good days than than when I do on the "on" weeks. And my bad days aren't as bad in the "off" days.

I do take my supplements during the "on" weeks. But it's much easier to load up on probiotics and binderd without having to space it out - leaving a few hour window on either side of abx.



Sounds like maybe you have a lot of toxins from the "on" week that you're dealing with throughout your "off" week.

As time goes on, you should start to see a pattern.

Have you treated Bartonella yet?

Posted 6/18/2017 2:49 AM (GMT 0)

Brainzap545 said...
Well this is my third round of meds...at the end of my last round I was doing so well and my NP at Jemsek told me she was so happy with my progress. I felt pretty good almost all the days of my off weeks, and about half of the days during the on.

Now that I started this round it has been rough and I felt worse on my off weeks (which is a change from the trend I had noticed.) I am on meds more days than I ever had been before so I may have more die off as a result.

Are there any good supplements to help with ammonia? Is that likely my issue as most of my symptoms are head symptoms?

Girlie said...

Brainzap545 said...
Thanks for the feedback. What do you mean my off weeks are a gauge of my baseline? I am feeling a bit discouraged, because I used to feel better on my off weeks...but now on this third protocol round i feel worse. Does this mean I'm going backwards?

Also, I take all my supplements, whether on antibiotics or not. Should I just be taking them on off weeks? I wasn't aware they interacted. (except probiotics right after antibiotics)

No, you're not going backwards. I think You aren't at that point yet where you start to feel better on the 'off' weeks.
I have been treating Babesia for 3 1/2 months (almost) I am just starting to see a pattern - and on my week off I do have a few more good days than than when I do on the "on" weeks. And my bad days aren't as bad in the "off" days.

I do take my supplements during the "on" weeks. But it's much easier to load up on probiotics and binderd without having to space it out - leaving a few hour window on either side of abx.



Sounds like maybe you have a lot of toxins from the "on" week that you're dealing with throughout your "off" week.

As time goes on, you should start to see a pattern.

Have you treated Bartonella yet?

When you say third round of meds - have the meds changed? So in the previous six months - you did two protocols and now you're onto a third protocol with different meds?
What meds are you now on?
If you felt better before...then this round of meds are doing more 'killing'...are you hitting a different co-infection?

Are you now doing your second week 5 days in a row? instead of M/W/F?

*** I edited my last post: Re: when to take probiotics.
Posted 6/18/2017 3:04 AM (GMT 0)
Yes, third protocol with some different meds, some the same. I was previously targeting Babesia in my second protocol but now we are going after it "hard." I'm on Mepron for 8 days out of two weeks, before it was 6 and I am on an additional antibiotic and xylitol, lactoferrin and diflucan.
And yes, my second week is 5 days in a row, but 2 of those days are just the Mepron and Enula.

Girlie said...

Brainzap545 said...
Well this is my third round of meds...at the end of my last round I was doing so well and my NP at Jemsek told me she was so happy with my progress. I felt pretty good almost all the days of my off weeks, and about half of the days during the on.

Now that I started this round it has been rough and I felt worse on my off weeks (which is a change from the trend I had noticed.) I am on meds more days than I ever had been before so I may have more die off as a result.

Are there any good supplements to help with ammonia? Is that likely my issue as most of my symptoms are head symptoms?

Girlie said...

Brainzap545 said...
Thanks for the feedback. What do you mean my off weeks are a gauge of my baseline? I am feeling a bit discouraged, because I used to feel better on my off weeks...but now on this third protocol round i feel worse. Does this mean I'm going backwards?

Also, I take all my supplements, whether on antibiotics or not. Should I just be taking them on off weeks? I wasn't aware they interacted. (except probiotics right after antibiotics)

No, you're not going backwards. I think You aren't at that point yet where you start to feel better on the 'off' weeks.
I have been treating Babesia for 3 1/2 months (almost) I am just starting to see a pattern - and on my week off I do have a few more good days than than when I do on the "on" weeks. And my bad days aren't as bad in the "off" days.

I do take my supplements during the "on" weeks. But it's much easier to load up on probiotics and binderd without having to space it out - leaving a few hour window on either side of abx.



Sounds like maybe you have a lot of toxins from the "on" week that you're dealing with throughout your "off" week.

As time goes on, you should start to see a pattern.

Have you treated Bartonella yet?

When you say third round of meds - have the meds changed? So in the previous six months - you did two protocols and now you're onto a third protocol with different meds?
What meds are you now on?
If you felt better before...then this round of meds are doing more 'killing'...are you hitting a different co-infection?

Are you now doing your second week 5 days in a row? instead of M/W/F?

*** I edited my last post: Re: when to take probiotics.

Posted 6/18/2017 3:13 AM (GMT 0)

Brainzap545 said...
Yes, third protocol with some different meds, some the same. I was previously targeting Babesia in my second protocol but now we are going after it "hard." I'm on Mepron for 8 days out of two weeks, before it was 6 and I am on an additional antibiotic and xylitol, lactoferrin and diflucan.
And yes, my second week is 5 days in a row, but 2 of those days are just the Mepron and Enula.

Girlie said...

Brainzap545 said...
Well this is my third round of meds...at the end of my last round I was doing so well and my NP at Jemsek told me she was so happy with my progress. I felt pretty good almost all the days of my off weeks, and about half of the days during the on.

Now that I started this round it has been rough and I felt worse on my off weeks (which is a change from the trend I had noticed.) I am on meds more days than I ever had been before so I may have more die off as a result.

Are there any good supplements to help with ammonia? Is that likely my issue as most of my symptoms are head symptoms?

Girlie said...

Brainzap545 said...
Thanks for the feedback. What do you mean my off weeks are a gauge of my baseline? I am feeling a bit discouraged, because I used to feel better on my off weeks...but now on this third protocol round i feel worse. Does this mean I'm going backwards?

Also, I take all my supplements, whether on antibiotics or not. Should I just be taking them on off weeks? I wasn't aware they interacted. (except probiotics right after antibiotics)

No, you're not going backwards. I think You aren't at that point yet where you start to feel better on the 'off' weeks.
I have been treating Babesia for 3 1/2 months (almost) I am just starting to see a pattern - and on my week off I do have a few more good days than than when I do on the "on" weeks. And my bad days aren't as bad in the "off" days.

I do take my supplements during the "on" weeks. But it's much easier to load up on probiotics and binderd without having to space it out - leaving a few hour window on either side of abx.



Sounds like maybe you have a lot of toxins from the "on" week that you're dealing with throughout your "off" week.

As time goes on, you should start to see a pattern.

Have you treated Bartonella yet?

When you say third round of meds - have the meds changed? So in the previous six months - you did two protocols and now you're onto a third protocol with different meds?
What meds are you now on?
If you felt better before...then this round of meds are doing more 'killing'...are you hitting a different co-infection?

Are you now doing your second week 5 days in a row? instead of M/W/F?

*** I edited my last post: Re: when to take probiotics.

Okay - well that's why you're not feeling well - the Mepron is hitting the Babesia hard.
I'm doing something similar....and it's wicked on the 5 days straight for me.
Posted 6/18/2017 3:15 AM (GMT 0)
For clearing the 'head' you can try:

Jernigan's Neuro-Antitox - CNS/PNS

or

Nutramedix Pinella . (I take Pinella plus Nutramedix Burbur)


I have 'head' stuff with the Mepron. I feel some pressure behind my eyes.
Posted 6/18/2017 3:29 AM (GMT 0)
for head clearing I'm using LOLA (L-ornithine L-aspartate).

http://www.medscape.com/viewarticle/587349

https://www.amazon.com/Allergy-Research-Group-L-Ornithine-L-Aspartate-Powder/dp/B003FGROSW/ref=sr_1_1_a_it?ie=UTF8&qid=1497756559&sr=8-1&keywords=l-ornithine+l-aspartate

by AllergyReserchGroup.

Caramba
Posted 6/18/2017 11:46 AM (GMT 0)
Here is a breathing technique that may help:

http://lymeninjaradio.com/brain-fog-breathing-cheat-sheet-download/

Interesting interviews here, too.
Posted 6/18/2017 12:42 PM (GMT 0)
Jemsek pulses, burrascano (when he was practicing) pulsed, Shore pulses, Philips pulses, Horowitz pulses....
You would think it is somewhat effective?

Post Edited (Fronton) : 6/18/2017 6:45:54 AM (GMT-6)

Posted 6/18/2017 1:46 PM (GMT 0)

Fronton said...
Jemsek pulses, burrascano (when he was practicing) pulsed, Shore pulses, Philips pulses, Horowitz pulses....
You would think it is somewhat effective?

And if I'm not mistaken they all started their protocols using straight therapy & then switched over to pulsing b/c it was just proving to be more effective.
Posted 6/18/2017 1:53 PM (GMT 0)
For brain pressure, I've been using kudzu root - it's helped some with the brain fog too.

But when I had bad brain fog it was heavy detoxing and binders that cleared my brain fog - although it did take a while, but my brain fog was super heavy back then.
Posted 6/18/2017 6:02 PM (GMT 0)
How would you describe brain fog? I am still able to excel in school...but I just kind of feel like I'm floating in a different universe and can't quite focus properly on people. Just not grounded. Would that be "brain fog?"


Traveler said...
For brain pressure, I've been using kudzu root - it's helped some with the brain fog too.

But when I had bad brain fog it was heavy detoxing and binders that cleared my brain fog - although it did take a while, but my brain fog was super heavy back then.

Posted 6/18/2017 6:09 PM (GMT 0)
For me, my brain fog is made worse when I have brain pressure, so I included that as well. The Kudzu root helps because of it lowering my brain pressure as well.

Otherwise, my brain fog can make it difficult for me to function if it gets bad. I won't drive when my brain fog is bad, as I can't seem to be able to recognize "issues" when driving under those circumstances.

It's like my head is full of cotton or something, as it takes me longer to process many things. They do process, but it just takes a bit longer - the thicker my brain fog, the longer it takes for thoughts to process.

You said you can't focus properly on people - as in listening/hearing them, or in seeing them and recognizing them? If it's mainly stuff like that, it would likely be more of a depersonalization, rather than brain fog. With that, it's a matter of being in treatment that is effective for you long enough, as well as good detoxing.
Posted 6/18/2017 6:13 PM (GMT 0)
It's kind of like an overstimulation feeling in areas of bright light and then also having to focus on what different people are saying, and the ability to focus on their face. Something about looking directly at a person, it's like I see them-but I am not able to focus on them in the same way I used to. It's a little disorienting. Hard to explain! It feels like it has a lot to do with bright lights along with people.

I can't quite relate to depersonalization because I still have feelings and whatnot, but I do feel as though my perception is off and disorienting.

Traveler said...
For me, my brain fog is made worse when I have brain pressure, so I included that as well. The Kudzu root helps because of it lowering my brain pressure as well.

Otherwise, my brain fog can make it difficult for me to function if it gets bad. I won't drive when my brain fog is bad, as I can't seem to be able to recognize "issues" when driving under those circumstances.

It's like my head is full of cotton or something, as it takes me longer to process many things. They do process, but it just takes a bit longer - the thicker my brain fog, the longer it takes for thoughts to process.

You said you can't focus properly on people - as in listening/hearing them, or in seeing them and recognizing them? If it's mainly stuff like that, it would likely be more of a depersonalization, rather than brain fog. With that, it's a matter of being in treatment that is effective for you long enough, as well as good detoxing.

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