Need some advice! Please!

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notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 3/17/2018 2:51 PM (GMT -6)   
So, this forum was a lifesaver several years ago during my first "crash" with what was probably a 20-year-old-plus infection with Lyme and co. A bite and reinfection just about a year ago has caused me to relapse and start to go downhill again. This time I tested CDC positive for Lyme via a standard test, and my naturopath suspects that Babesia is still on board, as well (I tested positive for Babs multiple times before they stopped running the test for the "West Coast" version).

Naturopath started me on Houttonyia, Cryptolepsis, Sida Acuta, Teasel, Cat's Claw, Cordyceps and Sweet Annie in about August of last year. When I wasn't getting better fast enough, my old LLMD prescribed Minocycline 100 mg. twice a day, and Clindamycin 100 mg. twice a day. I started to get better really quickly, but after about a month started backsliding again. That's when he added Xylitol, Lactoferrin and Tinidazole 100 mg., twice a day, pulsed on Sat. and Sunday, to the regimen. He also upped the dose of Clindamycin to 200 mg. twice a day.

Right after I started the higher Clindamycin dose and Tinidazole, my anxiety, insomnia and depression (suicidal at one point) got MUCH worse--nearly intolerable. Thinking that I was toxic, with the OK of my LLMD, I stopped the higher dose of Clindamycin and the Tinidazole. My naturopath advised staying on the Clindmycin lower dose, but trying to begin the Tinidazole again. The theory being that then we are at least hitting all forms of the Lyme, but not pushing my body over the edge.

I skipped a weekend on the Tinidazole because I was under a LOT of stress. Power outage and my 18 year old was hospitalized. I was gradually feeling a lessening of the depression and anxiety. I was forced to begin taking Ativan to deal with the insomnia, but at least I wasn't suicidal, and not feeling uncontrollably anxious.

I took a dose of Tinidazole this a.m., and it's about 4 p.m. here now. My anxiety is building, and I feel like my eyes are having trouble focusing. Something is making me toxic, but I don't know if it's the medicine itself or the die-off. I'm thinking die-off, because I took the medicine more than 8 hours ago.

I don't know what to do. I work two jobs, and have two teenagers. I need to be functional and not thrown into a panic every time I get a letter in the mail about my son's impending financial aid decisions for college next year.

I'm thinking if the Tinidazole is causing tons of die-off, then there are lots of cyst forms that need to be busted and cleaned up with the antibiotics. I want to kill them off. But I cannot kill myself in the process, nor can I fall apart and turn into a loon. Advice?

Post Edited (notquitesoscared13) : 3/17/2018 1:54:23 PM (GMT-6)


notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 3/17/2018 4:55 PM (GMT -6)   
Please help! I feel like I'm drunk! The anxiety, disorientation, feeling of unease are getting worse and worse! Do you think it's the drug itself or die-off? How can I ease the symptoms? So sick! Anyone had a bad reaction to Tinidazole itself? Could it be the drug? Or do I just have a lot of cyst forms of Borrelia that are being killed off and causing toxicity? I'm afraid to take the second dose that I'm supposed to take in an hour. At the same time, I'm afraid to NOT attack the cysts if that's what I need to do to heal. I need advice. sad
Probably sick for more than 20 years. Crashed in Aug. of 2013. Completing 12 months of treatment as of Aug. 2014, and feeling much better! Have taken a wide variety of antibiotics, antiparasitics and herbals for blood-diagnosed Babesia, Erlichia and Anaplasma, and suspected Bart and Lyme.

Bitten by two ticks in March of 2016, which seems to have set off a new infection.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/17/2018 5:25 PM (GMT -6)   
I would do the Tinidazole for just two days per month...and see if that helps. That's how I take my cyst busters. (Per Dr J) at least you'll know that it's just short term and maybe you csn handle it knowing it's just that one time of two days - instead of every week


But isn't the dose of Tini 500 mg? Don't have my bottle in front of me.


I'm sorry you're suffering with this...don't take your second dose.


Can you take Epsom salt baths? That is the detox that works best for me if I'm miserable
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) : 3/17/2018 4:30:51 PM (GMT-6)


notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 3/17/2018 8:14 PM (GMT -6)   
Hey Girlie,

I can't take an epsom salt bath tonight, because this morning the shower diverter valve broke and taking a bath would stoke my anxiety, if that makes any sense? If I avoid looking at/using the tub, I can control the anxiety related to the tub. I know it sounds crazy--but maybe not to a fellow Lymie?

To top it off, I had JUST gotten off the phone with my mom after telling her how miserable I am. Told her I was going to bed with an Ativan. Went downstairs to shut off lights and discovered water on the floor. Problem with the furnace, which required an after-hours, no doubt very expensive call. I can't catch a break right now. It's fixed for now, but the guy reminded me that the furnace is nearing the end of its life. As is my roof, by the way. $500 a month for Lyme herbs is sucking up money that I don't have!

Thank you for the suggestion re the Tinidazole. I do believe I could handle it once a month. Once a week not so much. Not sure what the typical dose is.
Probably sick for more than 20 years. Crashed in Aug. of 2013. Completing 12 months of treatment as of Aug. 2014, and feeling much better! Have taken a wide variety of antibiotics, antiparasitics and herbals for blood-diagnosed Babesia, Erlichia and Anaplasma, and suspected Bart and Lyme.

Bitten by two ticks in March of 2016, which seems to have set off a new infection.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 793
   Posted 3/17/2018 8:29 PM (GMT -6)   
Tinidazole is the alternative to Flagyl, right?

I take Flagyl 2 days every 3 weeks. Well, I did. But, I am stopping. And I don't believe I will ever take it again. I'm not sure if it's the actual drug, or maybe I have a really high cystic load. Either way, it is creating too much havoc. I took Flagyl Thursday, and I am hating it today. I started treatment in August last year. I noticed after my second cycle of Flagyl I started getting really stiff and a strange CNS feeling throughout my body. I didn't put things together til recently. All I knew is that I would notice it would take a month and I would get worse. And it was on my off weeks. Right after the Flagyl.

So, definitely don't push it with that medication. I posted an article from an LLMD where he stated that he had patients tough it through strong herxes and ended up not getting better because of it.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/17/2018 8:34 PM (GMT -6)   
Hoagie said...
Tinidazole is the alternative to Flagyl, right?

I take Flagyl 2 days every 3 weeks. Well, I did. But, I am stopping. And I don't believe I will ever take it again. I'm not sure if it's the actual drug, or maybe I have a really high cystic load. Either way, it is creating too much havoc. I took Flagyl Thursday, and I am hating it today. I started treatment in August last year. I noticed after my second cycle of Flagyl I started getting really stiff and a strange CNS feeling throughout my body. I didn't put things together til recently. All I knew is that I would notice it would take a month and I would get worse. And it was on my off weeks. Right after the Flagyl.

So, definitely don't push it with that medication. I posted an article from an LLMD where he stated that he had patients tough it through strong herxes and ended up not getting better because of it.


Yes it's an alt to Flagyl.


So those patients NEVER got better....ever?
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

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 793
   Posted 3/17/2018 8:45 PM (GMT -6)   
Girlie said...
Hoagie said...
Tinidazole is the alternative to Flagyl, right?

I take Flagyl 2 days every 3 weeks. Well, I did. But, I am stopping. And I don't believe I will ever take it again. I'm not sure if it's the actual drug, or maybe I have a really high cystic load. Either way, it is creating too much havoc. I took Flagyl Thursday, and I am hating it today. I started treatment in August last year. I noticed after my second cycle of Flagyl I started getting really stiff and a strange CNS feeling throughout my body. I didn't put things together til recently. All I knew is that I would notice it would take a month and I would get worse. And it was on my off weeks. Right after the Flagyl.

So, definitely don't push it with that medication. I posted an article from an LLMD where he stated that he had patients tough it through strong herxes and ended up not getting better because of it.


Yes it's an alt to Flagyl.


So those patients NEVER got better....ever?


Not sure. This is the section from the article I read...

Some LLMD said...
In 1988, if my borreliosis patients had a Jarisch-Herxheimer-like reaction, I
changed their antibiotic. Later it was realized that the reaction was because the antibiotic
was working. So patients were told to try to stay on antibiotics during the Herxheimer.
It was then discovered that staying on antibiotics often caused more trouble than
good, if patients were having a Herx. Borreliosis patients usually lose ground if they stay
on antibiotics when Herxheimers hit.
Some of the saddest borreliosis patients I have are ones that did not take my
advice, and stayed on an antibiotic during a Jarisch-Herxheimer reaction. For months,
they went downhill and downhill. When they finally quit antibiotics, they often stay
worse. They usually do not get back to baseline, much less back to normal.
Your brain will tell you that since the Herxheimer indicate the antibiotic are
working, to stay on them. Please ignore your brain. Since 1988, with well over seven
thousand borreliosis patients, I assure you, going off antibiotics is the better part of valor.
We do not need any heros or heroines. Toughness is not needed. “No pain, no gain” does
not apply to Jarisch-Herxheimer-like reactions!


francisholisticmedicalcenter.com/images/Managing_through_the_Herxheimer_Reaction.pdf

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 793
   Posted 3/17/2018 8:49 PM (GMT -6)   
Here is another quote from the article...

LLMD said...
Going off antibiotics for a Herxheimer, usually results in symptom improvement
by 1 day to 5 days. This is true, until you use metronidazole, or atovaquone with
azithromycin. These antibiotics tend to cause very severe Herheimers, and often take
longer than 5 days for the symptoms to get better.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 230
   Posted 3/17/2018 9:46 PM (GMT -6)   
$500/month seems like a lot for herbs. You can make your own tinctures from bulk powders.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/17/2018 10:15 PM (GMT -6)   
notquitesoscared13 said...
Hey Girlie,

I can't take an epsom salt bath tonight, because this morning the shower diverter valve broke and taking a bath would stoke my anxiety, if that makes any sense? If I avoid looking at/using the tub, I can control the anxiety related to the tub. I know it sounds crazy--but maybe not to a fellow Lymie?

To top it off, I had JUST gotten off the phone with my mom after telling her how miserable I am. Told her I was going to bed with an Ativan. Went downstairs to shut off lights and discovered water on the floor. Problem with the furnace, which required an after-hours, no doubt very expensive call. I can't catch a break right now. It's fixed for now, but the guy reminded me that the furnace is nearing the end of its life. As is my roof, by the way. $500 a month for Lyme herbs is sucking up money that I don't have!

Thank you for the suggestion re the Tinidazole. I do believe I could handle it once a month. Once a week not so much. Not sure what the typical dose is.


I totally get you not being able to look at the tub because of anxiety.

I have a similar 'thing' going on - but instead of anxiety, I get nervous system shivering ramping up and then increase in nerve pain....

It will get better...hang in there

Sending you hugs.
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

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 3/18/2018 3:59 AM (GMT -6)   
My plan was to tough it out until this round of abx was gone, then go back to only herbs. But this Tinidazole...I have to function, you know?
Probably sick for more than 20 years. Crashed in Aug. of 2013. Completing 12 months of treatment as of Aug. 2014, and feeling much better! Have taken a wide variety of antibiotics, antiparasitics and herbals for blood-diagnosed Babesia, Erlichia and Anaplasma, and suspected Bart and Lyme.

Bitten by two ticks in March of 2016, which seems to have set off a new infection.

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 3/18/2018 7:09 AM (GMT -6)   
Oh, and you were right, Girlie. I checked the Tinidazole bottle and they ARE 500 mg. tablets. I took the second dose last night before I read your message, so when I read your advice to skip the dose I was pretty apprehensive. But, I woke up this morning after getting a decent sleep with the help of 1 mg. of Ativan, and I don't feel particularly awful. My theory is that the initial dose busted a LOT of cysts, but with the second dose there weren't that many left to bust, so the die-off wasn't as severe. Does that make sense?

Anyway, I think I'll take the Tini today, and then I'll have to decide whether to do once a week or once a month after that. I wonder whether leaving a longer period between pulsing allows more of the bacteria to form cysts, so that there will be a more severe die-off when you DO pulse the Tini? So many unanswered questions. I HATE these diseases!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/18/2018 12:24 PM (GMT -6)   
Not sure it's a good thing that I know the dosages of many antibiotics...lol.
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
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