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Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 5/2/2018 9:37 PM (GMT -6)   
So i posted a while ago, starting the lyme journey. Since then i finally had a test come back positive for lyme ( IGXSpot ). I had western blot and immunoblot come back from Igenix showing basically nothing.

My LLMD also believe i have mycoplasma and i tested positive for babesia. I wouldn't be surprised if i have Bart as well, i have lots of bart symptoms. Right now mainly treating the Mycoplasma, but from what i have seen those ABX should hit Bart and Lyme hard too.

I've been on abx for almost two months now and full ABX dosage for about a month, and honestly i feel basically no difference besides digestive pain and bloating etc. It's always been a symptom, but it's a mess right now, back to as bad as it's ever been. It makes me think that this isn't working, that i'm just screwing up my gut flora while i slowly get worse.

Anyway, since Monday my twitching, cramping and weakness has ramped up. The twitching is scaring me again because of the uncontrollable "jerks", my hand, or leg or throat will move because of a quick muscle contraction and then it disappears. On it's own that is no big deal, but when mixed with twitching EVERYWHERE, all the time, and some weakness in my legs and arms it's hard to not worry about the future.

I know it could be a lot worse, but i'm just struggling with the doubt and worry today sad

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 5/3/2018 12:26 AM (GMT -6)   
Hey Garion - Sorry you're going through a rough time right now.

i know what you mean - Not only did I have horrible symptoms - pain, twitching,...etc..but I also had some fear creeping in many days.

I remember going to bed - laying on my back, my body twitching all over the place..with my right leg intermittently jerking - kicking up. My left cheek was numb, and somehow I'd manage to fall asleep...only to be awakened a couple hours later - in a panic, sweating, gasping for air and choking on phlegm.

Since treatment, that doesn't happen anymore. I just have a bit of anxiety in the morning, slight sweating when I wake up.

This did not happen quickly for me though... my improvements have happened slowly, ever-so-slowly.

You will also improve....just keep telling yourself this. I know it's hard...and I worried about it too.
We are soldiers...in the battle of our lives. You're not alone - we're here to support you.

Hang in there...better days/nights are coming.
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

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2123
   Posted 5/3/2018 3:14 AM (GMT -6)   
Hi Garion,
You could be herxing since your symptoms have ramped up.

Have you considered using binders such as zeobind or activated charcoal to help bind the toxins from die off of the bacteria?

You could also discuss with your llmd the use of something to clear the ammonia buildup we get in our brains from Lyme and co and treatment.

Some people use Jernigans Neuro Anti tox II CNS/PNS others use pinella and burber.


Just some things to check out and remember to always check for side effects and contradictions.

Take care hope you get some relief soon, Jo

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 337
   Posted 5/3/2018 7:38 AM (GMT -6)   
What is your treatment for mycoplasma? (What antibiotics are you taking?)

caramba
Veteran Member


Date Joined Aug 2016
Total Posts : 605
   Posted 5/3/2018 9:03 AM (GMT -6)   
hi Garion, fighting lyme and symptoms is going to be a long process, and you have to adjust mentally to cope with bad and worse days and LONG term treatment. Realize this is going to take time. Also, pay attention to what is happening, and what medications your are taking. I actually sometimes write a daily journal, otherwise I forget things.

in particular, each abx has it's own set of side effects (stomache bloating, tingles, anxiety, depression etc) so keep in mind that feeling bad, might be a herx reaction, a side effect, or a combination of things. even FULL MOON impacts us. I woke up to a bad case of anxiety the other day, and sure enough it was the full moon. the key is, instead of being worried about the problem (anxiety), I'm glad I recognized it was impacting me, and it was due to the moon and I could deal with that.

For me the key was to realize everytime I noticed something, it can be attributed to something, I may or may not be able to identify it, but over time you get much, much better and in tune with your body and you learn to listen to it.

the other shift one must do, is to start developing your own master treatment plan. you are/will be in a much better position to identify what needs to be done as you learn more about lyme, than your doctor who sees you once a month. taking that ownership, instead of just following the LLMD prescriptions will be key to your success long term.

Finally, as you start, initially it is good to make sure you have removed mercury (fillings), and to Detox. some of these "co-treatments" may not be given to you by your LLMD, but he will be OK with them if you bring them up.

This DOES get better, but it's not just going to be ABX.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 5/3/2018 11:19 AM (GMT -6)   
From the details you gave in your post, I'm thinking a herx, too.

Are yiu protecting your gut while on antibiotics by taking probiotics and avoiding inflammatory foods like gluten, dairy, and sugar?

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 5/3/2018 1:19 PM (GMT -6)   
Hi Guys,

Thanks for the responses. I actually already do quite a bit. Here is a rundown.

ABX: Minocycline 2x100mg, Rifampin 300mg, Azithromycin 600mg(M,W,F), Tindamax (still scaling up, will be 3 times a week)

Herbal: Taking Myc-P herbal tincture, I recognize some of the herbs from Buhners Lyme protocol, but i don't have his book on Mycoplasma, taking Transfer Factor Multi Immune.

Detox: Activated Charcoal last thing at night, Chorella with lunch and dinner, dry brushing with epson salt bath. Burber and Pinella tincture

Vitamins: Multi Methelated B Vitamin, since i have a MTHFR gene defect, omega 3 capsules, Milk Thistle for liver support etc.

Gut: I take probiotics once a day, also drink Kefir and Saurkruat, besides that i try to eat a low inflammatory diet, basically whole 30 or Paleo. I do screw up on this frequently because i feel so discouraged. I take Aloe vera with the antibiotics.

Caramba, i understand what you are saying in terms of taking ownership and mentally coming to grips that it is a long journey... but i just don't know if i have the energy or ability to do this. This disease has already taken so much from me, i need a win, i need some good news to keep me going, and i feel like i keep taking hit after hit.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 5/3/2018 1:23 PM (GMT -6)   
Garion - just keep on going...you will experience some improvements over time....just keep telling yourself that this isn't a quick 'fix' and you need to persevere.

Re: abx: Are you going to eventually be taking the Rifampin twice daily at 300 mg? (not just once)


We're all in this together....and we're here for support.
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

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 5/3/2018 1:27 PM (GMT -6)   
Not sure about the Rifampin honestly, i'm seeing the LLMD tomorrow. So far she has changed it up every time i get there, i've only been on 300mg for about 15 days. I was on 150mg for about 15 days and then i had liver and white blood cell tests.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 5/3/2018 1:29 PM (GMT -6)   
Garion said...
Not sure about the Rifampin honestly, i'm seeing the LLMD tomorrow. So far she has changed it up every time i get there, i've only been on 300mg for about 15 days. I was on 150mg for about 15 days and then i had liver and white blood cell tests.


The LLMD is most likely ramping you up slowly with the Rifampin.

I started at approximately 150 mg too. (I had to open up a 300 mg capsule and estimate half of it and put it in an empty cap)
Then I did 300 mg per day for a few weeks (can't remember exactly - maybe it was a full month) before going to 300 mg twice daily.
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 : 276
   Posted 5/3/2018 1:33 PM (GMT -6)   
I just wanted to say... If you truly feel that what you are doing isn't working, do something different. I don't think it's a good idea trying to push though and hope something will change for a long time..

But a month isn't very long so maybe you need to wait a little longer before you access how you are doing. Also you might want to switch to a different combination of antibiotics ( I have no idea which ones are best though).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 5/3/2018 1:46 PM (GMT -6)   
Notime4lyme said...
I just wanted to say... If you truly feel that what you are doing isn't working, do something different. I don't think it's a good idea trying to push though and hope something will change for a long time..

But a month isn't very long so maybe you need to wait a little longer before you access how you are doing. Also you might want to switch to a different combination of antibiotics ( I have no idea which ones are best though).



It looks like he is herxing with the increase in some symptoms. And, it can take several months (not just one or two) before improvements are made.

The abx he is on is a good combo.
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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