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Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 4/6/2018 5:43 AM (GMT -6)   
Hi All,

I'm looking for a good pulsing regime. My LLMD is not really up on this and I know it is effective for some people. Currently I'm on Mino, Rifampin, and Flagyl. Does anyone have any suggestions. My biggest issues are nerve related. I have neuropathy in my right foot/leg and in my tongue, lips, throat, sometimes face. Twitches and that electric buzzy feeling all over.

Thanks!

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 4/6/2018 6:04 AM (GMT -6)   
Others will be along that are more experienced to help with ABX dosing question.

Not sure if you are open to doing herbals that can be used along with ABX.

Buhner suggests in his 2nd edition"Healing Lyme" : For Buzzing or electric feeling add Sida acuta tincture.

Always start with only one to two drops to see how you tolerate then build up.

Always check for side effects and contradictions.

May want to check with your llmd.

Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 4/6/2018 6:20 AM (GMT -6)   
Thanks Goshawk, I did do Buhners herbs for about 8 months including Sida but it didn't help me all that much. But maybe I need to return to it.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 4/6/2018 6:49 AM (GMT -6)   
Neuropathy and brain fog were my worse remaining sx when I got to around 80% healed.

Here's some of my protocols in the past few years after I went 3 months abx free then relapsed in May 2015. My current Tetra, Diflucan, Alinia pulsing protocol has helped me a lot to get to 90 to 95% well. I also do Jk Plus blend with Cat's Claw, and Fresh Leaf Hout. Switching from regular Hout to Fresh Leaf about a year ago also may have helped. I've used CSA blend also in the past. I don't pulse any herbs.

3/12/18 to Present: Tetra, Diflucan, Alinia, Oregano 2 week on/4 week off pulse.
11/18/17 to 3/11/18: Tetra, Diflucan, Alinia 2 week on/3 week off pulse, added Liposomal Oil of Oregano
7/24/17 to 11/17/17: Tetra, Diflucan, Alinia 2 week on/3 week off pulse
7/1/17 to 7/9/17: Tetra 2 week pulse, ran out 7/9/17
6/14/17 to 6/30/17: Tetra, Alinia (ran-out) 2 week on/off pulse
5/27/17 to 6/13/17: Tetra, Diflucan, Alinia 2 week on/off pulse
5/1/17 to 5/26/17: Tetra, Diflucan, Alinia 2 week on/off pulse, continue Famvir full time
4/17/17 to 4/30/17: Ceftin and Bactrim full time after bite, added Tetracyline, continued Famvir
11/24/16 to 4/16/17: Pulse Ceftin and Bactrim 2 weeks on/off. Added Famvir fulltime.
9/24/16 to 11/23/16: Pulse Ceftin and Bactrim 2 weeks on/off.
7/28/16 to 9/23/16: Pulse Ceftin, Bactrim, Diflucan 2 weeks on/off.
7/7/16 to 7/27/16: Pulse Ceftin and Bactrim 2 weeks on/off. No refills left for Alinia
5/9/16 to 7/6/16: Pulse Ceftin and Bactrim 2 weeks on/off, Alinia full time
2/29/16 to 5/7/16: Nystatin, Cipro, and Plaquenil full time; pulse Ceftin 2 weeks on/off
2/15/16 to 2/28/16: Crypto, Nystatin, Cipro, Tetracycline, Plaquenil full time, no pulse.
12/7/15 to 2/14/16: Crypto, Nystatin, Cipro, Tetracycline, Plaquenil. ABX pulsed 2 weeks on/off
11/26/15 to 12/6/15:Rx Cryptolepis, Nystatin
9/23/15 to 11/25/15:Rx Cryptolepis, Cipro, Tetracycline, Plaquenil, Nystatin (liquid)
7/31/15 to 9/17/15: Rx Cryptolepis, Cipro, Minocycline

Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 4/6/2018 7:15 AM (GMT -6)   
Tickbite thanks so much, can you tell me what your neuropathy symptoms are/were?

Also, which of these did you feel was the most successful?

Also, this is a question for everyone, can Rifampin be pulsed? I've read contrary opinions on this.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 4/6/2018 7:43 AM (GMT -6)   
Neuro sx are tingling in right foot, burning in left foot, ice cold right hand, shooting pains in left thumb joint, brain fog worsens under stress, internal vibrations in upper torso, some trembling of the hands, and numb fingertips.... enough?


The most successful combo has been my current protocol... so I'm staying with it and gradually increasing my OFF weeks. I'm approaching the end of my first 4 week OFF cycle since last Sept, when a had some noticeable back sliding, so I stayed on 2 ON and 3 OFF thru the winter. Doing pretty good and will restart on Monday or sooner depending on how I feel this weekend.

It's all trial and error and you need to be willing to take risks. For example, I was aware of the risks with Levoquin but took it anyway, and my right Achilies tendon cramped up after 19 days so I stopped. Eight month or so later I tried Cipro with no ill effects and stayed on it long term.

Also keep in mind that just because something didn't work in the past doesn't mean it won't work at another time. Keep good records.

As far a rifampin goes... I never took it in a pulse protocol. Always full time.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 4/6/2018 11:35 AM (GMT -6)   
I pulse everything - including Rifampin.


Tickbite - The neuro sx: tingling, burning - feet, etc. Do you still have them, and are starting to wean off the meds 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

Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 4/6/2018 1:22 PM (GMT -6)   
Girlie, what is your pulsing schedule? So you've had no issues pulsing rifampin?

Thanks

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 4/6/2018 1:25 PM (GMT -6)   
No issues pulsing Rifampin.

I did M/W/F for several months
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

Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 4/6/2018 1:26 PM (GMT -6)   
Thank you Tickbite, this is really helpful. Two questions, when you say tetra is that any tetracycline drug and oregano, is that oil of oregano and if so, is there a favored brand? Again thanks so much for your help!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 4/6/2018 1:27 PM (GMT -6)   
I’m not taking Rifampin now - so this was mostly in 2016 and a few months in 2017
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

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 4/6/2018 2:06 PM (GMT -6)   
Girlie, the remaining neuro sx are at a low level and I have stopped recording them in my daily sx log I was keeping religiously since starting treatment in 2010. But they are not gone yet and occasionally flare. Days 4 thru 6 of my two week ON pulse will cause a mild herx or flare then level off and randomly fluctuate. Progress is very tough to measure in the final 10% zone.

This is why we are weaning off the ABX more gradually this time to try to restart my immune system than we did back in March 2015 only to relapse in May 2015. Right now I'm probably better than I was before stopping abx last time.

Kitkate - Tetra is the original tetracycline at 750 mg twice a day when I pulse. I have taken Doxy and Mino in the past in different protocols. I do hear that more LLMDs are using it now instead of Doxy.

I take Liposomal Oil of Oregano under Rx from Hopkinton Drugs compounding pharmacy in MA. Its not cheap at about $120 when cold packed priority shipping is added. Liposomal is suppose to help it penetrate deeper. Oregano is also very good at controlling candida.

Kct
Regular Member


Date Joined May 2016
Total Posts : 219
   Posted 4/6/2018 3:30 PM (GMT -6)   
I added minocycline BID for intracellular and pulse with 48 hrs of Tindamax weekly after reading Dr Sapi's report on its high kill rate of L forms and persisters. I do ceftin BID too for cell wall. I also used LBCore for a few months. Had to cut down on minocycline does due to vertigo.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 4/6/2018 4:27 PM (GMT -6)   
tickbite666 said...
Girlie, the remaining neuro sx are at a low level and I have stopped recording them in my daily sx log I was keeping religiously since starting treatment in 2010. But they are not gone yet and occasionally flare. Days 4 thru 6 of my two week ON pulse will cause a mild herx or flare then level off and randomly fluctuate. Progress is very tough to measure in the final 10% zone.

This is why we are weaning off the ABX more gradually this time to try to restart my immune system than we did back in March 2015 only to relapse in May 2015. Right now I'm probably better than I was before stopping abx last time.

Kitkate - Tetra is the original tetracycline at 750 mg twice a day when I pulse. I have taken Doxy and Mino in the past in different protocols. I do hear that more LLMDs are using it now instead of Doxy.



Wow - so you've been in treatment for most of the time since 2010?
Are you hoping your immune system will bring you to symptom free....or just hold steady - as your current symptoms you could live with? (i.e. if they never improved from today's level)
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

Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 4/6/2018 6:42 PM (GMT -6)   
Thanks Kct, that's really helpful. How are you feeling since pulsing in general?

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 4/9/2018 8:29 AM (GMT -6)   
Girlie,

Yes, Started ABX in March 2010 with the famous Dr D from Cape Cod, then switch to current LLMD for more aggressive treatment of co-infections. Only had that 3 month period back on 2015 without abx then relapsed.

Started my 2 week pulse yesterday a day early since I noticed foot neuropathy increasing late last week.

I'm hoping that my immune system and Buhner's herbs can maintain the status quo and live with the minor nuisance level sx remaining without abx. But I'm also OK if I need some minor abx treatment as well. This 2 week ON and 4 week OFF schedule is not that hard to take. And symptom Free may never happen.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33957
   Posted 4/9/2018 12:26 PM (GMT -6)   
tickbite666 said...
Girlie,

Yes, Started ABX in March 2010 with the famous Dr D from Cape Cod, then switch to current LLMD for more aggressive treatment of co-infections. Only had that 3 month period back on 2015 without abx then relapsed.

Started my 2 week pulse yesterday a day early since I noticed foot neuropathy increasing late last week.

I'm hoping that my immune system and Buhner's herbs can maintain the status quo and live with the minor nuisance level sx remaining without abx. But I'm also OK if I need some minor abx treatment as well. This 2 week ON and 4 week OFF schedule is not that hard to take. And symptom Free may never happen.


How come I don't know who you are referring to "famous Dr. D from Cape Cod"

Yah, 2 week on 4 off ain't so bad...although I would be concerned down the road...that I may be cut off the abx....and all symptoms came roaring back.

I guess it's still possible on the 2 on and 4 off that your lingering symptoms will resolve...
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

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 4/9/2018 1:51 PM (GMT -6)   
Girlie,

I've given you Dr D's name before, he's been retired since 2015 or so. Sam Donta was a leading lyme research doctor from the very early days of learning about this disease. He was one of the few "good" ID Ducks around and was a member of the IDSA committee that formulated their crappy guidelines on no such thing as Chronic Lyme and easy to cure in 30 days. After placing the only dissenting vote and it became too political, he quit the committee. He was a frequent guest speaker at many ILADS conferences, but never actually became a member.

His research team was I believe credited with isolating the neurotoxin responsible for causing a herx. He also had a pretty good clinical practice treating lyme in parallel to his research work. He was great at diagnosing Lyme and took insurance (very rare), but a little weak in targeting co's. He was also good about staying above State Medical Board scrutiny.

Sam Donta and Marc Cartwright hold a patent on Bb neurotoxin. http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=/netahtml/PTO/srchnum.htm&r=1&f=G&l=50&s1=6,667,038.PN.&OS=PN/6,667,038&RS=PN/6,667,038

More information can be found here: http://www.actionlyme.org/Donta.htm

Post Edited (tickbite666) : 4/9/2018 12:57:26 PM (GMT-6)

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