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Posted 5/14/2018 12:29 PM (GMT 0)
I've been really curious about this lately. I am at about 90% better, but have remained here for the last year or so...you could say that I have plateaued in treatment (I pulse antibiotics).

In reading various articles and listening to interviews, it seems like a lot of those who are "in remission" manage this disease by treating the flares as they come instead of continuous treatment (by continuous I mean a strict regimen, either pulsing antimicrobial or continuous use of). Typically this means treating a flare-up once or twice a year.

I'm wondering if I am unnecessarily popping pills and that I am at a point to be able to function for months at a time, and when I feel symptoms return, immediately treat again.
I do speak from a certain amount of experience....I had symptoms return 8 months after stopping antibiotics, but it only took about 2 months max to get everything back under control, but for the last year as I stated above, I have remained here despite ongoing treatment.

Thoughts?
Posted 5/14/2018 5:45 PM (GMT 0)

Fronton said...
I've been really curious about this lately. I am at about 90% better, but have remained here for the last year or so...you could say that I have plateaued in treatment (I pulse antibiotics).

In reading various articles and listening to interviews, it seems like a lot of those who are "in remission" manage this disease by treating the flares as they come instead of continuous treatment (by continuous I mean a strict regimen, either pulsing antimicrobial or continuous use of). Typically this means treating a flare-up once or twice a year.

I'm wondering if I am unnecessarily popping pills and that I am at a point to be able to function for months at a time, and when I feel symptoms return, immediately treat again.
I do speak from a certain amount of experience....I had symptoms return 8 months after stopping antibiotics, but it only took about 2 months max to get everything back under control, but for the last year as I stated above, I have remained here despite ongoing treatment.

Thoughts?

Fronton - with your scheduled pulses - are you not getting any flares...no symptoms?
I can't remember - are you on the 3 days per month dosing now?
Posted 5/14/2018 6:20 PM (GMT 0)

sandyfeet said...
I wonder about the same thing. I’m not at the end of treatment yet but if you’ve been at 90% for a full year it sounds like a time to either reasses what symptoms are now yours to keep or if something else is going on that you need to address to complete healing.

FWIW I’m currently doing this rethinking as I’m stuck at 60-75% and I feel that there is a prior issue I need to deal with to finish.

Since I’ve been doing herbals instead of antibiotics I’ve assumed that I will likely stay on a supportive dose long term although what that will be I am not yet sure. If antibiotics are your approach, dealing with flares sounds plasusible to me. Have you considered switching to one or two herbs as a maintenance mode for a remaining 6 months to transition?

How long were you at a plateau before your previous relapse? What symptoms are the last 10% for you?

It’s such a hard question and I’d love to know how others make this decision.

I was constant for quite some time as well...maybe 6 months or so.
My last 10% is occasional muscle twitching, occasional knee pain, and occasional ice pick/frontal lobe headaches.

And Girlie, I don't get flares. I do have lingering symptoms, but no pattern or cycle to it.
I am on 2 on/2 off; however, I am entering my 4th week this week of off just to test the waters!
Posted 5/14/2018 6:49 PM (GMT 0)
Fronton,

In response to your initial post here, what you describe as treating flares as they come a couple times a year sounds much like my symotoms in the early years.

My chronic symptoms began in the fall of 2009. They came on dramatically and turned my life upside down. The first 2 weeks were the worst. As months went by my condition gradually improved. Some symptoms went away completely while others waxed and waned. A few remained constant for years.

I was not on any kind of treatment, as doctors nevet identified the cause of illness. I assume my immune system did what it could and that is how I improved without treatment. Even when I didn't have any noticeable symotoms, though, my body never felt normal again.

As the years went by, new symptoms like joint stiffness, numbness in my hands and arms, foot pain and weak ankles began to show up. They would come for days to weeks and suddenly disappear for weeks to months. Symptoms would rotate. As time went on, the flares (if you want to call it that) lasted longer and disappeared for much shorter periods of time.

After a brief respiratory infection in 2015, symptoms became constant. New and worse symptoms appeared until it became disabling.

I understand what you're saying, and it is hard to know what to do. The remaining symptoms you mentioned sounded like bart to me. I saw mpost's response on another thread about bart got me thinking. Mpost indicated that bart is not a problem unless there is something wrong with your immune system and compared it to HIV. I don't know that I agree with all that, but it was thought provoking. If that is correct, it could be the presence of another infection or immune suppressing agent is what keeps bart active and if that other factor is identified and removed, then the immune system will take care of bart.

I hope I made sense here. I feel like I'm rambling.
Posted 5/14/2018 7:04 PM (GMT 0)
Muscle twitching seems to be one of the last symptoms to leave for a lot of folks. I know Chapelle (who is better now) still had twitching for over a year after she stopped abx. I think a lot of it has to do with inflammation, but who knows.

I originally suspected Bart many years ago, but like a lot of others have stated, Bart has a lot shorter life cycle compared with Lyme and people usually relapse or notice symptoms increase within one week of stopping meds (assuming an active infection). So far I am on day 24 with no increase or return of old symptoms.

So tough to say!

Post Edited (Fronton) : 5/14/2018 1:09:56 PM (GMT-6)

Posted 5/14/2018 7:30 PM (GMT 0)

WalkingbyFaith said...
Fronton,

In response to your initial post here, what you describe as treating flares as they come a couple times a year sounds much like my symotoms in the early years.

My chronic symptoms began in the fall of 2009. They came on dramatically and turned my life upside down. The first 2 weeks were the worst. As months went by my condition gradually improved. Some symptoms went away completely while others waxed and waned. A few remained constant for years.

I was not on any kind of treatment, as doctors nevet identified the cause of illness. I assume my immune system did what it could and that is how I improved without treatment. Even when I didn't have any noticeable symotoms, though, my body never felt normal again.

As the years went by, new symptoms like joint stiffness, numbness in my hands and arms, foot pain and weak ankles began to show up. They would come for days to weeks and suddenly disappear for weeks to months. Symptoms would rotate. As time went on, the flares (if you want to call it that) lasted longer and disappeared for much shorter periods of time.

After a brief respiratory infection in 2015, symptoms became constant. New and worse symptoms appeared until it became disabling.

I understand what you're saying, and it is hard to know what to do. The remaining symptoms you mentioned sounded like bart to me. I saw mpost's response on another thread about bart got me thinking. Mpost indicated that bart is not a problem unless there is something wrong with your immune system and compared it to HIV. I don't know that I agree with all that, but it was thought provoking. If that is correct, it could be the presence of another infection or immune suppressing agent is what keeps bart active and if that other factor is identified and removed, then the immune system will take care of bart.

I hope I made sense here. I feel like I'm rambling.

Great info here. Thanks for the response. I had the opposite experience when I was first infected....the whole list of symptoms hit me like a freight train 3-4 weeks after the tick bite.
Posted 5/14/2018 7:34 PM (GMT 0)

WalkingbyFaith said...
Fronton,
I understand what you're saying, and it is hard to know what to do. The remaining symptoms you mentioned sounded like bart to me. I saw mpost's response on another thread about bart got me thinking. Mpost indicated that bart is not a problem unless there is something wrong with your immune system and compared it to HIV. I don't know that I agree with all that, but it was thought provoking. If that is correct, it could be the presence of another infection or immune suppressing agent is what keeps bart active and if that other factor is identified and removed, then the immune system will take care of bart.

im not making that HIV-bart link up ...

"
Bartonella-associated infections in HIV-infected patients.
Koehler JE1.
Author information
Abstract
AIDS:
Two species of the gram-negative bacilli Bartonella, B. henselae and B. quintana, cause disease in HIV-infected patients. If untreated, infection can be fatal. Manifestations include bacillary angiomatosis (BA), bacillary peliosis hepatis (BP), bacteremia, or a combination of these. BA and BP present as lesions, but bacteremia may be subacute and persist for months without diagnosis. Additionally, patients may acquire cat scratch disease (CSD), but this is more common in immunocompetent patients. BA lesions are usually vascular, friable, and bleed profusely when traumatized. They may be confused with Kaposi's sarcoma (KS), pyogenic granuloma, lymphoma and various subcutaneous tumors and infections. Lesions may affect almost any organ, and appear as angiomatous papules, dry scaling lesions, subcutaneous nodules, cellulitic plaques or deep, highly vascularized, soft tissue masses. Patients may have osseus BA lesions (frequently affecting the long bones); hepatic and/or splenic lesions; bacteremia; or endocarditis. To diagnose infection, lesions should be biopsied and examined. Hematoxylin and eosin staining reveal histopathologic changes; darkly staining organisms are evident after Warthin-Starry silver staining; and electron microscopy allows visualization of the bacillus. An indirect immunofluorescence antibody test (IFA) detects bartonella-specific IgG antibodies. Treatment with erythromycin for at least three months is recommended, or with doxycycline if erythromycin is not well-tolerated. Severely ill patients should receive IV doxycycline with either gentamicin or rifampin for at least four months. To prevent infection, HIV-infected people should avoid traumatic cat contact and exposure to the body louse."

/www.ncbi.nlm.nih.gov/pubmed/11362939
Posted 5/14/2018 9:42 PM (GMT 0)

Fronton said...

WalkingbyFaith said...
Fronton,

In response to your initial post here, what you describe as treating flares as they come a couple times a year sounds much like my symotoms in the early years.

My chronic symptoms began in the fall of 2009. They came on dramatically and turned my life upside down. The first 2 weeks were the worst. As months went by my condition gradually improved. Some symptoms went away completely while others waxed and waned. A few remained constant for years.

I was not on any kind of treatment, as doctors nevet identified the cause of illness. I assume my immune system did what it could and that is how I improved without treatment. Even when I didn't have any noticeable symotoms, though, my body never felt normal again.

As the years went by, new symptoms like joint stiffness, numbness in my hands and arms, foot pain and weak ankles began to show up. They would come for days to weeks and suddenly disappear for weeks to months. Symptoms would rotate. As time went on, the flares (if you want to call it that) lasted longer and disappeared for much shorter periods of time.

After a brief respiratory infection in 2015, symptoms became constant. New and worse symptoms appeared until it became disabling.

I understand what you're saying, and it is hard to know what to do. The remaining symptoms you mentioned sounded like bart to me. I saw mpost's response on another thread about bart got me thinking. Mpost indicated that bart is not a problem unless there is something wrong with your immune system and compared it to HIV. I don't know that I agree with all that, but it was thought provoking. If that is correct, it could be the presence of another infection or immune suppressing agent is what keeps bart active and if that other factor is identified and removed, then the immune system will take care of bart.

I hope I made sense here. I feel like I'm rambling.

Great info here. Thanks for the response. I had the opposite experience when I was first infected....the whole list of symptoms hit me like a freight train 3-4 weeks after the tick bite.

I don't know when I was infected...but my symptoms came on fast and furious as well. Thought I was gonna lose my mind.
Posted 5/14/2018 9:55 PM (GMT 0)
Fronton - I'm suffering from Mepron brain today (first dose after 2 weeks off) and excuse me if I'm asking something you've already explained.
I'm trying to get your symptom picture.
...and this mepron has made my brain a bit mushy today.

When you're "ON" the antibiotics - you have none of those symptoms? (the twitching, ice-pic headaches and occasional knee pain)

Then when you're off for 2 weeks...they do come back? or they don't and you're wondering if you should increase the off days.... and just start taking abx when the symptoms come back?

And you do not get any other symptoms whether you're on or off the abx, right?



So what about the 3 days dosing per month...couldn't you do that for awhile...before completely stopping?

What does your Doc say?
Posted 5/14/2018 10:07 PM (GMT 0)
I'm at about 95% too and am trying to stick with herbals and supplements after using rifampin on and off for a few months (following months of antibiox/herbals mix). After I read Dr J and some things by Dr K, I became convinced that for me getting my immune system to take over was key. So I'm trying to eat clean, take the biopure cocktail (dr K), and supplements. I did burner with the rifampin. I'm so much better than I was a year ago, but not at the finish line. I'm giving the biopure a couple more months, and then may switch to dr J protocol for bart if still getting some occasional symptoms/flares.

I think we're supposed to treat for 2 months after symptoms stop. I've also read 4 months. I think I would treat for 4-6 months after but try to do it with herbals. The antibiox, for me anyway, are better when first treating or when there is a bad flare. Otherwise, I find they beat up my immunity too much.

I also haven't tried to exercise like I was pre-diagnosis, so maybe I'm not as far along as I think. I'm planning on trying tennis next month (after school ends for the kids). I'll have more time then and can deal with a flare if I need to. Hope not!
Posted 5/15/2018 10:34 AM (GMT 0)
Kat1000, what is the bio pure cocktail? I am in need of some good immune system boosters as I am currently on an amylose free diet and taking activated charcoal/modified citrus pectin for biotoxins. She wants to see how I do before I start cholestyramine (although I don't think I will be able to tolerate it so might have to stick with MCP).

Since I started this diet my energy is LOW as I am experiencing more fatigue and the eye fatigue/blurriness thing I get she says is more than likely biotoxins. I am sure it's my body reacting to the new carb free/sugar free zone. I do feel that my inflammation is quite a bit better though so I am trying to stick with the diet.

I need some ideas for energy and immune boosters though that won't cause any kind of herx as I have to work. I bought some Reservatrol/Japanese Knotweed but took some over the weekend and the next morning I did not feel well so scared it was that but could've been the fact I had gone to the gym and it was the exercise that caused it. I want to start taking some maintenance herbs but just don't know the proper ones to take...

FYI, I do have the HLA gene for both Lyme and Mold so I herx pretty easily.
Posted 5/15/2018 5:04 PM (GMT 0)
You can go to biopureus.com and you'll find the cocktail. There is also a tea (cistus) there that is good and helps with immunity. These are things Dr Klinghardt recommends, and I believe he helped to formulate the cocktail which is made up of several herbs. My LLMD really likes Klinghardt, but he was honest and told me I'm one of the first he's had try the cocktail. I started it coming off of rifampin and buhner's, and it seems to be helping.

I started very slow and I'm up to 30 drops 2x a day. Sometimes, if I'm home, I'll add in 10 drops midday.

I also think the detoxing and diet continues to be important.

Hope that helps!

ps - I work full-time too and herxed with antibiox but doing ok with the cocktail.

Post Edited (Kat1000) : 5/15/2018 11:10:31 AM (GMT-6)

Posted 5/15/2018 6:14 PM (GMT 0)
I just looked at that Biopure line. Lord have mercy, somebody's getting rich.

I don't understand how all these doctors and such who come up with product lines can in good consience charge such 2-7 times as much for a 2 oz bottle of herbal tincture as what you would pay from one of the quality herbal suppliers, even for herbal blends.

Do their products contain some secret ingredient that makes them work like a magic concoction?
Posted 5/15/2018 6:33 PM (GMT 0)
wbf since I only use it 2x a day it's actually less than what I spent for buhner's 2x a day, and I don't have to mix it which is a plus for me! the downside I see is if someone has a reaction they won't know which herb it's from, but in my case I had already taken quite a few so there were only 1 or 2 that were completely new. So the biopure is $80 every 4-5 weeks and you can get free shipping by using betterhealth (at least it's been working so far). That's from betterhealthguy site I found when I was researching it.

I've thought about dr j's products too, but it was actually someone on here (and I'm sorry I don't remember who) but they had gone from rifampin to this cocktail, so when my llmd suggested the same thing for bart I decided to give it a go. I really do believe this is all trial and error given that we all react so differently and have different combos of infections.

warning: it tastes like swamp water!!!
Posted 5/16/2018 8:16 PM (GMT 0)
I too have been considering this tactic recently. It seems there have been examples of people having success using this method. If I am understanding Burroscanos personal treatment schedule correctly, I believe he did this, as did Pam Weintraub. There seems to be a few people who have also done this strategy who have posted on various message boards. There seems to be a common thread here that some people have been successful with, where they start treatment for 1-3 months, stop for 1-2 months, treat again, and then repeat this process as many as 3-4 times. Basically treating and taking longer breaks in between treatments, instead of using continuous treatment over many moths or years.

I'm not sure how you would refer to it though, it's not really a pulse as we would normally think of a pulse in Lyme treatment, like a MWF dosing, or 1 week on 1 week off. I guess you could call it a modified pulse, or extended pulse.

This is similar to the way Dr. Garth Nicholson suggests treating mycoplasma. And there is at least one person who posted on quora claiming this is THE method to treat Lyme, and he says he did it using only doxycycline after being sick for 3 years. He claims he did 1 month of doxy, then 3 months off and repeated this twice, so over 1 full year, but with only 3 months of actual treatment. ( a 1 month on, 3 months off pulse)

We really dont have a very solid understanding of how these bacteria behave and develop in the human body, but Dr. Sapi and others have proven that lyme can encyst itself (in vitro) when it senses an environmental threat like antimicrobials.

What could be happening in this approach, whether it's intentional or not, is that over time the spirochetes are being killed off slowly, and allowed to come out of cyst form and killed off again. Perhaps when there is lag between treatments all of them come out of cyst form when they sense the antimicrobial threat is gone and each time more and more spirochetes are killed, instead of just continuously remaining in cyst form as they might do with a more continuous treatment.

Theoretically this could eliminate the need for a "cyst buster" which may or may not be able to penetrate into deeper tissues and cells, and "immune privileged" areas like the brain where Lyme is believed to "hide" when under a threat. The theory is you might be drawing them out of hiding where they may be more easy to kill.

This is all theoretical and speculative, but there is a decent basis for this approach. And it might explain how some people have had success using repeat treatments while others who have treated non-stop for years have not.

I wonder why we dont hear about more LLMD's trying this tactic. Of course I'm not familiar with every LLMD's approach, as many differ in what they try, but among the more well known and well published LLMD's, you dont see this method used intentionally. Many use pulses, but they are much shorter pulses. A lot of times you hear about them using a "flare up treatment" towards the end of a treatment plan.

There really may be something to this. More may not always be better. Perhaps a more strategic cyclical approach is necessary. This is very interesting to consider.

Any one else have any thoughts about this, or experience trying this strategy?
Posted 5/16/2018 8:57 PM (GMT 0)

logmoss82 said...
I too have been considering this tactic recently. It seems there have been examples of people having success using this method. If I am understanding Burroscanos personal treatment schedule correctly, I believe he did this, as did Pam Weintraub. There seems to be a few people who have also done this strategy who have posted on various message boards. There seems to be a common thread here that some people have been successful with, where they start treatment for 1-3 months, stop for 1-2 months, treat again, and then repeat this process as many as 3-4 times. Basically treating and taking longer breaks in between treatments, instead of using continuous treatment over many moths or years.

I'm not sure how you would refer to it though, it's not really a pulse as we would normally think of a pulse in Lyme treatment, like a MWF dosing, or 1 week on 1 week off. I guess you could call it a modified pulse, or extended pulse.

This is similar to the way Dr. Garth Nicholson suggests treating mycoplasma. And there is at least one person who posted on quora claiming this is THE method to treat Lyme, and he says he did it using only doxycycline after being sick for 3 years. He claims he did 1 month of doxy, then 3 months off and repeated this twice, so over 1 full year, but with only 3 months of actual treatment. ( a 1 month on, 3 months off pulse)

We really dont have a very solid understanding of how these bacteria behave and develop in the human body, but Dr. Sapi and others have proven that lyme can encyst itself (in vitro) when it senses an environmental threat like antimicrobials.

What could be happening in this approach, whether it's intentional or not, is that over time the spirochetes are being killed off slowly, and allowed to come out of cyst form and killed off again. Perhaps when there is lag between treatments all of them come out of cyst form when they sense the antimicrobial threat is gone and each time more and more spirochetes are killed, instead of just continuously remaining in cyst form as they might do with a more continuous treatment.

Theoretically this could eliminate the need for a "cyst buster" which may or may not be able to penetrate into deeper tissues and cells, and "immune privileged" areas like the brain where Lyme is believed to "hide" when under a threat. The theory is you might be drawing them out of hiding where they may be more easy to kill.

This is all theoretical and speculative, but there is a decent basis for this approach. And it might explain how some people have had success using repeat treatments while others who have treated non-stop for years have not.

I wonder why we dont hear about more LLMD's trying this tactic. Of course I'm not familiar with every LLMD's approach, as many differ in what they try, but among the more well known and well published LLMD's, you dont see this method used intentionally. Many use pulses, but they are much shorter pulses. A lot of times you hear about them using a "flare up treatment" towards the end of a treatment plan.

There really may be something to this. More may not always be better. Perhaps a more strategic cyclical approach is necessary. This is very interesting to consider.

Any one else have any thoughts about this, or experience trying this strategy?

Exactly. These two links are worth the click as well and substantiate our curiosity.

/www.huffingtonpost.com/dana-parish/its-a-scandal--daryl-hall_b_11118332.html

/www.facebook.com/notes/under-our-skin-the-untold-story-of-lyme-disease/lyme-destroys-families-an-update-from-jordan-fisher-smith/68321963548/

Post Edited (Fronton) : 5/16/2018 3:17:04 PM (GMT-6)

Posted 5/17/2018 3:16 PM (GMT 0)
Yes, good links. I remember Rawls, who isn't a fan of antibiox, suggested 4 weeks on/4 weeks off. I did make progress last year while sometimes taking as much as a 2 month break from antibiox and using herbals only. Rifampin was really hard on my stomach, but eventually once I worked up to it I think it really helped me with bartonella.

I also remember reading, and I believe this was either Dr. J or Klinghardt, that the first dose of antibiox hits the bacteria the hardest and then they hide, i.e. biofilm. If that's true, then spacing out antibiox would seem beneficial.
Posted 5/17/2018 9:48 PM (GMT 0)
That's a great question. I've heard that last 10% can be the toughest to nail. I tend to believe in treatment rotations, especially if one has plateaued. I think it's a case by case basis (depending on pathogen stew, patient immune system genetics, etc), for some to maintain their 90% they need to continuously keep treating to keep everything at bay (even with just baseline herbs). Others can make it work by introducing treatments whenever they have a flare at that point. It strikes me as a form of pulse therapy, which actually seems like a very good strategy in general. I do think you "surprise" the pathogens when you give them a break and then out of nowhere (to them) introduce an antimicrobial challenge. Maybe they are at their most vulnerable then..

Personally I will keep rotating and trying to find the most effective therapies so I can keep pushing this stuff back and regain as much quality of life as I can. I fear recrudescence a lot, I can't go through this again, not after I feel like every inch I've gained has been so hard-earned. So yeah, I'll maintain lower level herbal baseline therapies and do rotations with those whenever I get to a point I'm happy with.
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