Worse after months of Lyme Treatment

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BlakeAlexander
Regular Member


Date Joined May 2017
Total Posts : 33
   Posted 2/20/2018 8:48 PM (GMT -6)   
I treated for Lyme with Doxy/Rifampin from March to October/November and just continued to get worse so my LLMD took me off antibiotics. My symptoms did not improve when I stopped antibiotics so I am doubting this was a detox/herx issue. Maybe it still could have been a detox issue...?

We ran an IGENEX Test and I came up negative across the board for Lyme (Western Blot and PCR) but positive with very high babesia duncani antibody levels (Igm 640).

Is it possible that by treating Lyme and not paying attention to Co-infections that there can be a worsening of symptoms from a co-infection? And If so, should I focus solely on that co-infection for the time being or still be treating the Lyme as well?

I remember reading somewhere that Buhner says that when treating one infection, another can cause a worsening of symptoms like they are "competing" for resources in the body??? Something along those lines... I wasn't sure if that was restricted to coinfections or if that included Lyme as well.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2022
   Posted 2/20/2018 9:14 PM (GMT -6)   
BlakeAlexander said...
Is it possible that by treating Lyme and not paying attention to Co-infections that there can be a worsening of symptoms from a co-infection? And If so, should I focus solely on that co-infection for the time being or still be treating the Lyme as well?

I remember reading somewhere that Buhner says that when treating one infection, another can cause a worsening of symptoms like they are "competing" for resources in the body??? Something along those lines... I wasn't sure if that was restricted to coinfections or if that included Lyme as well.


I think it's possible. Seems to be what happened to me twice now - once after 7 days of minocycline and most recently after 7 days of Augmentin. Both times, my bartonella symptoms got much worse. After minocycline, my joint and muscle stiffness, foot pain, and loss of stamina left me barely able to walk for 2 months.

After the minocycline incident, I decided antibiotics were not for me and also decided the doctor was not for me. I did my research and chose to treat myself with herbs using Buhner's protocol. I started out with japanese knotweed, cat's claw, danshen/skullcap combo, and red root. Then I added Gou-teng and lion's mane. Then I started the whole bartonella protocol (supportive herbs first, followed by IHA, followed by Sida Acuta). Then I added bidens pilosa, phellodendron (a berberine), and kudzu root.

Basically, I'm doing the full bartonella protocol minus arginine along with additional herbs for Lyme, babesia, and chlamydia pneumonia.

In October, I consulted with a real Lyme doctor. At that time, I was just starting out on the bartonella protocol. She advised me to add more herbs for Lyme and babesia and to treat them all at the same time. She described it as playing whack-a-mole. You beat down one infection and another one pops up. You just gotta keep going until they're all gone.

magoo2
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Date Joined Mar 2015
Total Posts : 1302
   Posted 2/20/2018 9:22 PM (GMT -6)   
I think when you are stuck think dental or parasites. Have you been checked by a biological dds or a doc that treats parasites?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 2/20/2018 10:23 PM (GMT -6)   
BlakeAlexander said...
I treated for Lyme with Doxy/Rifampin from March to October/November and just continued to get worse so my LLMD took me off antibiotics. My symptoms did not improve when I stopped antibiotics so I am doubting this was a detox/herx issue. Maybe it still could have been a detox issue...?

We ran an IGENEX Test and I came up negative across the board for Lyme (Western Blot and PCR) but positive with very high babesia duncani antibody levels (Igm 640).

Is it possible that by treating Lyme and not paying attention to Co-infections that there can be a worsening of symptoms from a co-infection? And If so, should I focus solely on that co-infection for the time being or still be treating the Lyme as well?

I remember reading somewhere that Buhner says that when treating one infection, another can cause a worsening of symptoms like they are "competing" for resources in the body??? Something along those lines... I wasn't sure if that was restricted to coinfections or if that included Lyme as well.


Before I finished reading your post I was thinking about Babesia. Dr J treats Babesia early on - he sees it as significant player and because you tested positive for Babesia - it’s an easy answer - you should treat it.
When you treat Babesia with Pharma - you will also be treating Lyme.

For instance if you take Mepron and Azithromycin for Babesia, it will also hit Lyme.

I have taken Mepron with two abx - pulsing them all.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BlakeAlexander
Regular Member


Date Joined May 2017
Total Posts : 33
   Posted 2/21/2018 11:26 AM (GMT -6)   
Girlie,

Yeah I see that most on here treat Babesia with Mepron and Azithromycin. My LLMD wants to use malarone and artemisinin, none of which target lyme specifically. So what I am wondering now is how much I should worry about Lyme still being there? I guess that's a million dollar question most of us want answered...

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/21/2018 12:25 PM (GMT -6)   
magoo2 said...
I think when you are stuck think dental or parasites. Have you been checked by a biological dds or a doc that treats parasites?


I would take that farther personally.
When we are stuck, it can be many factors that can be explored:
dental
parasites
viruses
numerous coinfections
methylation pathway problems
yeast
heavy metals
mold
MCAS (Mast Cell Activation Syndrome)
KPU/HPU
etc
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Post Edited (1000Daisies) : 2/21/2018 10:29:25 AM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 2/21/2018 12:30 PM (GMT -6)   
BlakeAlexander said...
Girlie,

Yeah I see that most on here treat Babesia with Mepron and Azithromycin. My LLMD wants to use malarone and artemisinin, none of which target lyme specifically. So what I am wondering now is how much I should worry about Lyme still being there? I guess that's a million dollar question most of us want answered...


Well - I would discuss this with your Dr. Most LLMD’s will prescribe an antibiotic with Mepron or Malarone - I wouldn’t want to take it without one.

It may be necessary for Babesia (not just Lyme)

Both Dr J and Dr H always prescribe at least one antibiotic with it.
They’ve been treating patients for many years
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/21/2018 12:31 PM (GMT -6)   
BlakeAlexander said...

I remember reading somewhere that Buhner says that when treating one infection, another can cause a worsening of symptoms like they are "competing" for resources in the body??? Something along those lines... I wasn't sure if that was restricted to coinfections or if that included Lyme as well.


I do believe this. I've heard of it commonly referred to as "peeling back the layers of a onion".
When treating one infection, I've heard it is indeed common for new symptoms from a different infection to emerge. Kind of like "king of the hill" game, kwim?
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/21/2018 12:36 PM (GMT -6)   
I think it's important to find your path to healing and that often means changing directions.

I know somebody who is extremely sick for years from this. Doctors just kept throwing more and different abx at him. He finally switched doctors, and they took him off abx and switched to herbals (plus treating other things - like MCAS). He finally started to improve and get his health back.
Sometimes, the path takes us down unexpected roads to healing.

I'm not suggesting you switch from abx. It may simply be that you aren't on the right abx for your conditions, so it may be time for a change in your path (to include different abx).

YOU SAID:
"Is it possible that by treating Lyme and not paying attention to Co-infections that there can be a worsening of symptoms from a co-infection? And If so, should I focus solely on that co-infection for the time being or still be treating the Lyme as well?"

MY REPLY:
Yes. Ignoring coinfections can be a huge factor in not healing.
Personally, when we switched to full herbals, I focused on lyme disease. It was a mistake for us because lyme is the least of our issues. I should have started with the babesia and bartonella herbals first. Because, for us, I believe those were our biggest issues.

Truly wishing you the best.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

BlakeAlexander
Regular Member


Date Joined May 2017
Total Posts : 33
   Posted 2/21/2018 1:03 PM (GMT -6)   
1000Daisies,

We ran a broad range of tests including most of those listed and found slightly elevated levels of mercury and aluminum as well as mold and SIBO so we are currently treating those. We did not cover MCAS or KPU/HPU. I have heard of both of these in the past few months. Are they big players? What can be indicative of MCAS or KPU/HPU in terms of symptomology?

BlakeAlexander
Regular Member


Date Joined May 2017
Total Posts : 33
   Posted 2/21/2018 1:06 PM (GMT -6)   
Girlie,

I initially thought the same thing and was a little worried that my doctor wanted to use malarone without a macrolide. But apparently malarone can be used without another ABX. On page 153 of Dr. H's most recent book he states, "Malarone can be used alone as a single agent, but Mepron should always be used with a macrolide and/or other intracellular medication to prevent drug resistance." I am assuming this is because of the Proguanil in the malarone. Regardless, good looking out. I will definitely be keeping an eye out for any need to add azithromycin or biaxin down the line.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 2/21/2018 4:39 PM (GMT -6)   
1000Daisies said...
magoo2 said...
I think when you are stuck think dental or parasites. Have you been checked by a biological dds or a doc that treats parasites?


I would take that farther personally.
When we are stuck, it can be many factors that can be explored:
dental
parasites
viruses
numerous coinfections
methylation pathway problems
yeast
heavy metals
mold
MCAS (Mast Cell Activation Syndrome)
KPU/HPU
etc


I don't consider Blake to be 'stuck'. He's only treated with one protocol of doxy plus Rifampin for 6/7 months.

He has tested positive for Babesia and hasn't had treatment for it.

So, that's where I'd start without a doubt.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 2/21/2018 4:42 PM (GMT -6)   
BlakeAlexander said...
Girlie,

I initially thought the same thing and was a little worried that my doctor wanted to use malarone without a macrolide. But apparently malarone can be used without another ABX. On page 153 of Dr. H's most recent book he states, "Malarone can be used alone as a single agent, but Mepron should always be used with a macrolide and/or other intracellular medication to prevent drug resistance." I am assuming this is because of the Proguanil in the malarone. Regardless, good looking out. I will definitely be keeping an eye out for any need to add azithromycin or biaxin down the line.


Well, we're not just talking about resistance, though. We're also talking about treating lyme with the Babesia...no?

I guess Malarone CAN be used alone because of the Proguail - but I've seen charts of Dr. H's protocols...and the ones I've seen - they are multi-abx approach.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/21/2018 9:17 PM (GMT -6)   
Girlie said...
1000Daisies said...
magoo2 said...
I think when you are stuck think dental or parasites. Have you been checked by a biological dds or a doc that treats parasites?


I would take that farther personally.
When we are stuck, it can be many factors that can be explored:
dental
parasites
viruses
numerous coinfections
methylation pathway problems
yeast
heavy metals
mold
MCAS (Mast Cell Activation Syndrome)
KPU/HPU
etc


I don't consider Blake to be 'stuck'. He's only treated with one protocol of doxy plus Rifampin for 6/7 months.

He has tested positive for Babesia and hasn't had treatment for it.

So, that's where I'd start without a doubt.


Hi Girlie. I was replying to magoo's comment about being stuck and what to look for.
I didn't say OP was stuck but was simply expanding a stuck list previously mentioned.
Sorry for the confusion!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 2/21/2018 10:09 PM (GMT -6)   
1000Daisies said...
Girlie said...
1000Daisies said...
magoo2 said...
I think when you are stuck think dental or parasites. Have you been checked by a biological dds or a doc that treats parasites?


I would take that farther personally.
When we are stuck, it can be many factors that can be explored:
dental
parasites
viruses
numerous coinfections
methylation pathway problems
yeast
heavy metals
mold
MCAS (Mast Cell Activation Syndrome)
KPU/HPU
etc


I don't consider Blake to be 'stuck'. He's only treated with one protocol of doxy plus Rifampin for 6/7 months.

He has tested positive for Babesia and hasn't had treatment for it.

So, that's where I'd start without a doubt.


Hi Girlie. I was replying to magoo's comment about being stuck and what to look for.
I didn't say OP was stuck but was simply expanding a stuck list previously mentioned.
Sorry for the confusion!


Okay - no worries.

I just didn't want Blake to feel that he was 'stuck' when he hasn't really done much yet for treatment...and especially not having done Babs treatment.

All good - the written (typed) word sometimes isn't interpreted the same way the spoken word is. I find myself back-spacing over a lot of sentences I've typed. smile
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/22/2018 10:25 AM (GMT -6)   
BlakeAlexander said...
1000Daisies,

We ran a broad range of tests including most of those listed and found slightly elevated levels of mercury and aluminum as well as mold and SIBO so we are currently treating those. We did not cover MCAS or KPU/HPU. I have heard of both of these in the past few months. Are they big players? What can be indicative of MCAS or KPU/HPU in terms of symptomology?


That is impressive that you have had most of these things tested for. Quite impressive indeed!

I don't know enough about KPU/HPU or MCAS in order to fully answer your questions. We did dabble in the KPU world for awhile but wasn't a game changer for us.

Are they big players? There are some that indeed believe KPU can be.
There are some good links in this post:
/www.healingwell.com/community/default.aspx?f=30&m=3976674

As for MCAS, I think it's not really that well known (not a lot of discussion on it). We didn't deal with this personally. Hopefully somebody more experienced/knowledgable can help you on that.
But I do know it was apparently a very big factor for the person I mentioned previously.

Hope that helps a little.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Tashin
New Member


Date Joined Feb 2018
Total Posts : 15
   Posted 2/26/2018 10:11 PM (GMT -6)   
Hi,
i'm new to the forum and just wondering why I don't see everyone taking tinidazole (or at least metronidazole) on their Lyme protocols. I thought after Eva Sapi's findings that would be standard with any Lyme treatment. Have I missed something?
Thanks

B99
Regular Member


Date Joined Sep 2016
Total Posts : 95
   Posted 2/26/2018 10:58 PM (GMT -6)   
Our LLMD uses Tindazole later in the protocol, same with Flagyl. I believe it's because they are both powerful cyst busters. Using them early on could cause too severe a die-off. Not good. At least this is what I remember ... it's been a while.
College age daughter diagnosed with Lyme, babesiosis, possible bartonella. Infected for a couple of years before being diagnosed and had advanced neurological symptoms. We used antibiotic and herbal protocols. She is done with treatment, and is now working through PTSD and adrenal fatigue.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 2/26/2018 11:31 PM (GMT -6)   
Tashin said...
Hi,
i'm new to the forum and just wondering why I don't see everyone taking tinidazole (or at least metronidazole) on their Lyme protocols. I thought after Eva Sapi's findings that would be standard with any Lyme treatment. Have I missed something?
Thanks


Dr. J (Washington) has patients taking metronidazole a few days a month only...used as a cyst buster.

There's lots of 'findings' that don't always produce in results.

Eva Sapi also did work on cbd oil and spirochetes, biofilms and in-vitro showed good results, too.
But, that doesn't necessarily translate into success with people.
There are some testimonies from people who have gotten their lives back with the cbd oil. But overall, it hasn't been a game changer. (wasn't for me anyway)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 173
   Posted 2/27/2018 6:49 AM (GMT -6)   
Can you use artemisia or grapefruit seed extract as a cyst buster instead of tinidazole / metronidazole ?

Tashin
New Member


Date Joined Feb 2018
Total Posts : 15
   Posted 2/27/2018 12:03 PM (GMT -6)   
Thanks.
i just came across Dr Zhang, saying that in his research Tinidazole had no effect on persisters, so it's difficult when the 2 main researchers have completely conflicting results!
Re Artemisia. Zhang says artemisinin works for persisters. I would be careful about using only the extracted artemsisin as it is easy to develop resistance to (malaria is already resistant) whereas in the whole plant no resistance has been shown. Treatment would likely take longer though. It is really strong, and seems to be generally recommended as a pulse dose. The mediherb/SP brand has the best i think. They are scrupulous about quality, checking levels of all bioactives, and contaminants.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 2/27/2018 1:18 PM (GMT -6)   
insomniaaa said...
Can you use artemisia or grapefruit seed extract as a cyst buster instead of tinidazole / metronidazole ?


GSE is used sometimes - for people who don't want to take the Flagyl or tinidazole. I don't know if Artemisia is a cyst buster though.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 385
   Posted 2/27/2018 1:41 PM (GMT -6)   
I took artemesia annua herb and it definitely helped.. Artemesinin or artemsia annua might be worth a try. I don't know what it did, but it made me feel a lot better in general.
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