No response after 6 months into treatment

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manamanam1
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Date Joined May 2017
Total Posts : 15
   Posted 11/10/2017 12:11 PM (GMT -7)   
Hello all. Here is my first thread: https://www.healingwell.com/community/default.aspx?f=30&m=3852344

manamanam1 said...
Hi. Please rate my abx plan and supplements.

I have lyme, bartonella and probably babesiosis, yersinia, myko chlamydia and candida overgrowth. Everything at least 15 years old (im 21), over 100 symptoms from every system.

I start treatment with bartonella:

Summamed (Azithromycin) 500 - 1-0-0 every second day - during a meal
Biseptol (Sulfamethoxazolum + Trimethoprimum) 960 - 1-0-1 every second day - during a meal

Supplements:
Litozin Forte - 3x 1 tab after meal
Vitamin C 1000mg with rose hip - 1x 1 tab after meal
B-Complex - 1x tab after meal
Cat's Claw - 3x 2 tabs during meal
Oregano oil - 1x 1 tab after meal
Calcium + Magnesium + Zinc - 3x 1 tab during a meal
Nature's way Optima - 1x 1 tab for the night
Essentiale Forte - 3x 2 tabs during meal

Is it looking good?


Currently im on 3rd combination of abx which is:
1st day: 3x Doxycyclinum 100mg + 3x Roxithromycinum 150mg
2nd day: 2x Metronidazole 250mg

and so on

Im 6 month into treatment and still didnt have herx or improvement. I know it is possible to not have improvement for such a long time but even herx? For now it looks like i dont have these infections which im sure i have..
I think bartonella should respond quickly.
Isnt this dosage too low? My LLMD says its good but i think most people take higher dosage.
What do you think?
Cheers

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/10/2017 12:23 PM (GMT -7)   
Your first combo was Azithromycin 500 mg per day plus Biseptol - is that the same as Bactrim DS?

What was our second combination?


Now you're on doxy and roxi - plus flagyl?

I've not heard of Roxithromycin being an antibiotic for lyme and co's.


For Bartonella, you're going to need something else - like Rifampin or Rifabutin.

The Bactrim (if that's what you were one) can target Bartonella, somewhat - but often it's not enough.

Also, if you do have Babesia, you may need to treat that sooner than later.
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

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/10/2017 12:30 PM (GMT -7)   
First combo was one day 1x Azitro 500 + 2x Bactrim DS 960, next day nothing, then next day again azitro + bactrim etc
Second combo was 1x Azitro 500 one day, next day 2x Tinidazole 500 etc
And third combo in first post


I dont know if i write this grammatically correctly, hope its understandable.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/10/2017 12:34 PM (GMT -7)   
manamanam1 said...
First combo was one day 1x Azitro 500 + 2x Bactrim DS 960, next day nothing, then next day again azitro + bactrim etc
Second combo was 1x Azitro 500 one day, next day 2x Tinidazole 500 etc
And third combo in first post


I dont know if i write this grammatically correctly, hope its understandable.


I think your first combo was the best so far IMO. (Bactrim plus azithromcin)

I don't see Vitamin D in your supplements. We're often deficient in that.

Have you been tested for Vit D levels? And is there probiotics in that list?

EDIT: I see you are taking some probiotics.
I have a few different types of probiotics that I take - and I take two to three different ones each day.
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

Post Edited (Girlie) : 11/10/2017 12:38:25 PM (GMT-7)


manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/10/2017 12:40 PM (GMT -7)   
Girlie said...
manamanam1 said...
First combo was one day 1x Azitro 500 + 2x Bactrim DS 960, next day nothing, then next day again azitro + bactrim etc
Second combo was 1x Azitro 500 one day, next day 2x Tinidazole 500 etc
And third combo in first post


I dont know if i write this grammatically correctly, hope its understandable.


I think your first combo was the best so far IMO. (Bactrim plus azithromcin)

I don't see Vitamin D in your supplements. We're often deficient in that.

Have you been tested for Vit D levels? And is there probiotics in that list?


I take Vitamin D, didnt test its levels and yes, probiotics is there (Nature's Way Optima)

It worries me as hell that i dont have response from abx for that long..
I still feel shi*ty same as before treatment having so much symptoms.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/10/2017 12:48 PM (GMT -7)   
There are a couple of very experienced LLMD's who say Babesia even in non-symptomatic patients often needs to be treated before any improvements will happen.

Maybe this is the case with you?

Or...like I posted - you need something else for Bartonella. Maybe discuss this with your treating physician. Rifampin with minocycline is a good option.
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

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/10/2017 1:08 PM (GMT -7)   
I have some symptoms like night sweats, shortness of breath or pain in chest that may indicate i have babesia too but shouldnt bartonella be treated before babesia?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/10/2017 1:10 PM (GMT -7)   
manamanam1 said...
I have some symptoms like night sweats, shortness of breath or pain in chest that may indicate i have babesia too but shouldnt bartonella be treated before babesia?


Not according to some LLMD's.

One well known LLMD - Dr. J. treats all patients for Babesia. (before bartonella or sometimes concurrently)

Dr. H. talks about asymptomatic babesia - sometimes holding back patients' from healing.

But, even for bartonella - not sure your protocol is 'enough' - like I posted - the Bactrim was better for bart than what you're currently taking.
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 : 27285
   Posted 11/10/2017 1:14 PM (GMT -7)   
Have you thought about adding in some herbals? You could add in babesia herbs: Crytolepis, Sida Acuta, and also some Artemisinin (Art should be pulsed)
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

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/10/2017 1:22 PM (GMT -7)   
I gave it a thought but i dont know if my stomach can handle it..
I have gastritis and duodenitis since 2010 probably caused by bartonella.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1382
   Posted 11/10/2017 1:27 PM (GMT -7)   
I agree w/ Girlie to treat co-s. My first year of treatment in 2010 I was with a very highly rated LLMP who was the only dissenting vote on the 12 person panel authoring the current IDSA Lyme guidelines.

He only used a few basic protocols and I only saw limited improvements to a few sx. I then switched to my current LLMD to seek more aggressive treatment for co's. Weeks 4 through 9 on Mepron/Zith was living hell then started to see improvements while taking Omni and rotating other Rx combos for Lyme.
After four month of hitting Babs switch right over to Bart. Then on to the big guns with IV Rocephin with many other combos.

As Girlie said... You should consider adding in some burner herbs along with the ABX combos. Jap Knotweed would be a good start as well as the others she mentioned

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/10/2017 1:34 PM (GMT -7)   
But still, 6 months with these abx and no reaction isnt normal, 99% people have at least herx..

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/10/2017 2:00 PM (GMT -7)   
manamanam1 said...
But still, 6 months with these abx and no reaction isnt normal, 99% people have at least herx..


While not everyone herxes - most people do.

And you shld start seeing some improvement in at least one symptom . soon.

But , like I pointed out - not sure about your protocol. I think that's the issue IMO
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

Post Edited (Girlie) : 11/10/2017 2:03:47 PM (GMT-7)


KB69
Regular Member


Date Joined Jan 2017
Total Posts : 176
   Posted 11/10/2017 3:58 PM (GMT -7)   
Just chiming in with Girlie and TickBite -- I have Lyme, Bart and had Babs. I treated Lyme and Bart for several months and made minor gains, but inevitably slipped backward. When I started treated Babesia, I made meaningful progress.

I still have Lyme and Bartonella to deal with, but feel more confident about being able to get at those infections now that I've dealt with the Babesia (no symptoms for 3 months after 6 months on Mepron/Zith).

We're all so different, but I think treating Babesia can be a game changer ... at least worth considering.

hammer8
Regular Member


Date Joined Oct 2017
Total Posts : 20
   Posted 11/10/2017 4:10 PM (GMT -7)   
KB69 - Did you herx from the initial lyme/bart treatment, or did the babesia interfere with any killing of the spirochete, and thus no herxing?

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/11/2017 1:26 PM (GMT -7)   
hammer8 said...
KB69 - Did you herx from the initial lyme/bart treatment, or did the babesia interfere with any killing of the spirochete, and thus no herxing?


I'd like to know that too.
If you had any response then you werent scared like me after 6 months of no reaction sad

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/13/2017 1:31 PM (GMT -7)   
Maybe someone else want to share their opinion?
When did you have your first herx?

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2510
   Posted 11/13/2017 7:44 PM (GMT -7)   
>>When I started treated Babesia, I made meaningful progress.

Dr. J in DC believes Babesia is THE blocker when you can't make meaningful progress against the other pathogens. He usually deals with this first and I mean DEALS with it as in 4,6,12 months or longer until your liver and spleen aren't swollen. Once these are beaten down he goes after Bartonella more specifically. The babesia protocol usually has some abx that will hit lyme.

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/14/2017 4:46 AM (GMT -7)   
Ive read probably in some ILADS guidelines that atovaquone which is in Mepron blocks future treating of bartonella so we should treat bartonella first and then babesia.
I dont know how much of it is true.

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 145
   Posted 11/14/2017 6:42 AM (GMT -7)   
I have been treating more than 4 months and had no herx or improvement that I can pinpoint. I'm now two weeks into my third protocol

1. Azithromycin, minocycline, rifampicin
2. Minocycline + herbals
3. Doxycycline, plaquenil, azithromycine

In addition I've been taking lots of other supplements.

I can feel your frustration, but I unfortunately have no answers. I'm even starting to wonder if Lyme is what I have after all.
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 of 0

Started treatment in May 2017

manamanam1
New Member


Date Joined May 2017
Total Posts : 15
   Posted 11/14/2017 11:01 AM (GMT -7)   
@RedLabel Can you tell me your dosage? Is it higher than mine?

BTW did you have any test positive?

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 145
   Posted 11/14/2017 12:33 PM (GMT -7)   
I am on
200mg doxy,
200mg plaquenil
500mg azithromycin three times a week

Only weak positive on an elispot
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 of 0

Started treatment in May 2017

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27285
   Posted 11/14/2017 1:34 PM (GMT -7)   
RedLabel said...
I am on
200mg doxy,
200mg plaquenil
500mg azithromycin three times a week

Only weak positive on an elispot


200 mg daily...or twice daily?

4 months and 3 different protocols already...interesting.
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

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 509
   Posted 11/14/2017 2:48 PM (GMT -7)   
manamanam - I'm at about the 7 month mark. If you haven't tried herbals, it sounds like it might be helpful for you to follow a protocol for babesia, Buhner, Cowden, whichever you like. I have Lyme and Bart, but I do remember reading that with babesia you need to knock it out (or at least down) first.

I also do a lot of detoxing: dry brushing, lemon water, epsom baths with essential oils, activated charcoal.

I've added in herbals and been on antibiox on and off. For me, I need to keep switching things up. The muscle pain is my worse symptom, and sometimes the fatigue is bad. I also alternate acupuncture and massage (lymph or circulatory) to help keep all my systems working as well as possible.

It's like chipping away at an iceberg, but eventually you can get there. I did have a worsening of symptoms now and then, but I've always been able to get up and go to work or parent or whatever needed to be done, so not sure if it's a herx or not. A couple weeks ago after starting the Buhner bart protocol with herbs, the pain was waking me up at night. Then I felt better. Today my muscles are achy again.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 145
   Posted 11/14/2017 2:56 PM (GMT -7)   
200mg daily Girlie

I do testing by a test called lymespot every two months and also check nk cells and cd57. Protocol seems to change based on this since I've seen no improvement.
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 of 0

Started treatment in May 2017
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