New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/1/2018 1:20 PM (GMT -6)   
It's me again! I hope everyone is having a better Easter then me! I was so hoping April would start out better but instead it seems to be worse! Yesterday it seemed like my symptoms lightened up later in the day but this morning I woke with horrible migrating pain in my head! My neck is in so much pain and it goes down my spine. I am dizzy, vision extra blurry, sore throat and chills that come and go. I stopped all treatment which was just doxy a few days ago, the Rifampin I took for 2 days only was last Sunday and Monday. All I've been doing is detoxing and taking supplements to help my nervous system. i am lost! I can't treat or I will totally fall apart but I am also not getting better not treating. I have an app with a regular GP tomorrow to try to get an MRI approved. This nightmare won't end!! It's been a month of hell! I don't know what to do!

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 4/1/2018 1:42 PM (GMT -6)   
Use binders to help stop the herxing now that you have stopped the Doxy - just watch out for constipation to start. That works against us being able to detox!

Also, have you been checked for MTHFR gene mutations?
What about Mast cell issues?
Have you just tried moving slower with upping the doses?
Have you tried any alternative/holistic approaches to treating these infections?
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/1/2018 2:32 PM (GMT -6)   
I've been taking binders, maybe I need to increase them. I never herxed from Doxy, even in the beginning. I do have the MTHFR gene. I don't think I've been checked for mast cell issues, not totally sure I understand what that is. I have been using a PEMF mat, which I heard could cause die off, but I lowered it down very, very low. I don't know if I want to do antibiotics any more, I've done a year and a half of antibiotics and about 6-7 months of malarone and feel worse then before I started treatment. I have a number of herbal protocols: BLT (which I've done small amounts, not over the last week though) Crytoplus (not currently on it) I have a bottle of Bar-1 which I am terrified to try considering how bad the last month has been. I've always been on a roller coaster, good days, bad days, good weeks, and bad ones, but this is the longest I've gone without a break!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/1/2018 6:37 PM (GMT -6)   
Tonya - sorry you're still dealing with all this.

When you were on the Malarone - did you get improvement? And what antibiotic did you take with it?


Maybe instead of Rifampin...you should start with Bactrim...it does have some activity against Bart...but it may be easier to tolerate than the rifampin.
Then after awhile you could do the Rifampin.
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

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4913
   Posted 4/1/2018 6:42 PM (GMT -6)   
sounds like you pissed bart off ...i would start houttynia and bvt asap and buy a rife ....btw bactrim caused a vasculitus and permanent nerve damage in me ....

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/1/2018 7:21 PM (GMT -6)   
Thanks Girlie and bluelyme. I so long not to have a headache!! I can't really say any treatment made a big difference. Definitely noticed a difference when I stopped gluten, years ago when symptoms started. I also gave up eggs and that seemed to help my stomach issues. But even before treatment I would have these stretches where I felt ok, not great but not bad either. Then I'd get hit again, so constantly up and down, but not down this long. When I started treatment it was pretty much the same, other then herxing. I think I did ok on malarone, I started with an 1/8 of a pill, then a 1/4 and so on, so no big herxing. I was already in some sort of flare before I started the 2 days i lasted on Rifampin. But that herx was the worst I've ever had! I can't tell now if I'm back to the flare or if this could still be from the Rifampin...I just don't know, just wish things would mellow out!! I ordered Buhner's book on Amazon, part of me thinks I will stick to herbal treatment for awhile, but I'm not even sure at what point I should start it, since I don't know if I can handle it. Would I herx from houttynia? If this is Bart then I can say with certainty that I dislike Bart the most!!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/1/2018 9:03 PM (GMT -6)   
bluelyme said...
sounds like you pissed bart off ...i would start houttynia and bvt asap and buy a rife ....btw bactrim caused a vasculitus and permanent nerve damage in me ....


Blue - you’ve mentioned this before about Bactrim and vasculitis .
Did blood work show anything ? High inflammation markers ... or?

And how did you arrive at the diagnosis of vasculitis ?

Did you have a bad rash ?
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 : 33939
   Posted 4/1/2018 9:09 PM (GMT -6)   
I would wait a bit before starting a herbal treatment - see what your baseline is.


Yes, houtty can cause a herx - Japanese knotweed is also part of the bart protocol - maybe start with that?
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

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/1/2018 9:42 PM (GMT -6)   
Is japanese knotweed a little more gentle? Will it cause a herx too? When will my baseline come back? I guess that's a pretty hard question to answer!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/1/2018 9:47 PM (GMT -6)   
tonyaraven said...
Is japanese knotweed a little more gentle? Will it cause a herx too? When will my baseline come back? I guess that's a pretty hard question to answer!!


I think most people find JK more tolerable than Houtty.

It could cause a herx - but you can start very low and raise slowly.
(I mean like a couple drops )

Re - baseline back - mine evolved - I never went back to baseline - I had symptoms subside and some worsen, as well as new ones appear.
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

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/1/2018 11:34 PM (GMT -6)   
It's terribly depressing! It would be so nice to have a time line that one knew one had to take and then all would be better but we never know!!

TxBart
Regular Member


Date Joined Jun 2017
Total Posts : 85
   Posted 4/2/2018 8:41 AM (GMT -6)   
I assume when you say BAR-1 you're referring to Beyond Balance MC-BAR-1? I take BAR-1 and my LLNP has me taking TOX-EASE-GL with it. I take 2 more drops a day of the tox-ease than the bar. I've been taking it since July and have taken it up very slowly. I'm now at 12 bar, 14 tox. BAR-2 is the one that contains Houtt. My LLNP says that I don't get to graduate to that until I'm consistently 95%. I'm close, but I still have a week here and there when something flares. The only other herb I'm doing is Samento. I have not done any abx. I have done quite a bit of IV ozone, which really helped knock things back. As far as the headaches, NIR sauna knocks those out for me. It doesn't get rid of all of the head pressure, but it does stop my headaches. I don't go for the 100 degree kill temps. Mine gets to the high 80s/low 90s, which makes me sweat plenty and it really relaxes me.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/2/2018 8:54 AM (GMT -6)   
Thanks Txbart! Did you herx at all when you started the MC Bar-1? That is the one I have. I thought when I start I'd do a drop in a glass and drink it over 3-4 days. I remember when I did A-bab I herxed from one drop! What were your bart symptoms before you started? Do see much improvement? My headaches are all over the plaice. Back of head, forehead, nervy pain in the bridge of my nose, top of the head, down into my neck and down my spine. My vision has been extra blurry with this super long flare and off and on anxiety.

TxBart
Regular Member


Date Joined Jun 2017
Total Posts : 85
   Posted 4/2/2018 9:47 AM (GMT -6)   
I have herxed with the bar-1. It doesn't tend to last a long time for me, but I also follow my naturopath's instructions to back it off a drop if I herx. The herxes I've had haven't been bad; mainly head pressure flares for a few hours. And I haven't tried to do the increase a drop a day until I herx. I increase a drop then stay at that new amount for at least a week before trying another increase.

My symptoms: head pressure, neck, hip, jaw and lower back pain, GI issues (a lot of acid reflux which I never had before), vision (floaters, blurry, I see light "trails" coming off of objects, light sensitivity, a couple of times double vision, snow in low light conditions), eyes stinging, eyelid swelling, ear pain, sinus pressure (glasses were really uncomfortable to wear for awhile because they seemed to amplify that pressure), central vertigo (I felt like a listing ship), nightmares, morning anxiety, facial twitching (eyelids, lips, cheeks), tooth nerve pain, fasciculations in my legs, roving itching rash, sound sensitivity, some headaches (not often), muscle weakness, sore throats (could be EBV related), hormonal problems (I have 0 testosterone and my periods were all over the place), memory issues, tinnitus, peripheral autonomic neuropathy (which explains some of the above symptoms)...those are the big ones.

Most of these are gone for me. Some of the vision problems remain and the head pressure, especially in my face and at the base of my skull, continue to make an almost daily appearance. But it is nothing like it was. I rarely feel like I'm going to fall over at any moment. My energy has come back. I can wear a hat without feeling like my head will implode. I sleep...sweet, lovely sleep.

I can't say improvement is just from herbs. Diet and probiotics really helped the GI issues. I started regular sauna use and IV ozone about a month after starting the herbs (herbs July, the others August). I'm on all of the typical supplements and vitamins. Acupuncture (which I did not believe in when I started all of this) helped with the neuro symptoms/head pressure. Daily walks and stretching have been helpful. I can feel a difference if I skip that for a couple of days. I do self lymphatic drainage massages on my head/neck at least once a week. I take LDN (this was a somewhat late add, so it wasn't the smoking gun for me getting to this stage of 90-95%). And I take nasal glutathione. It helps a little with the pressure.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/2/2018 3:37 PM (GMT -6)   
I'm so glad most of those are gone for you! i hope they stay away! My symptoms seem to go and come back, some go for a long time and then show up again! The pins and needles had been gone for a long time for me, as well as anxiety but came back last month with vengeance! The eye stuff is creepy, I have the blurry vision too and the fuzziness. Have you only done herbs? Maybe you already told me, sorry if you already answered that! I'm getting another MRI of my brain to see if anything else is going on, the last one had larger then normal white matter, but consistent with MS (phew). My llmd says that Bart can cause MS if left untreated.

I have another question for you Girlie, doesn't doxy and azithromycin treat Bart? I was on doxy and Azithromycin for almost a year? I'm confused why supposedly Bart is so bad right now!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 4/2/2018 3:56 PM (GMT -6)   
I know of a couple people who treated with only a macrolide and a tetracycline and got well but in both cases they were not ill for years - not sure if that’s why? (They had symptoms for 4-6 months)

I’ve also seen Bactrim being used successfully.

But from what I’ve read - Rifampin/Rifabutin is usually needed.
Most good, experienced llmd’s prescribe it for Bart.
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

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/2/2018 10:08 PM (GMT -6)   
Thanks Girlie. I wish I was one of the lucky ones who got better with doxy and azithromycin!
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, August 20, 2018 7:31 AM (GMT -6)
There are a total of 2,994,642 posts in 328,155 threads.
View Active Threads


Who's Online
This forum has 161294 registered members. Please welcome our newest member, Fred700.
265 Guest(s), 12 Registered Member(s) are currently online.  Details
SantaZia, Cigafred, magoo2, Glitterrain30, Fairwind, RobLee, SharonZ, bubbatc, cppoly, fjdrill, k07, iPoop