Terrible peripheral neuropathy after stopping doxy

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springsjean
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Date Joined Mar 2009
Total Posts : 2165
   Posted 3/30/2018 8:47 PM (GMT -6)   
Hi everyone - I’m back! Lol

Just recently stopped doryx again after being put back on after trigeminal neuralgia put me in rhe Hospital. just as happened 4 years ago, my armd and legs are burning terrible with peripheral neuropathy. But this time i an already on gralise (neurotin/gabap).

Cant figure out what is going on?! This time my lyme dr told me to go bsck on the doryx to see if the psin goes away. Its getting worse by the day

Anyone else have this happen?

Im stumped once again.
Prior moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: neurontin, cymbalta, Prior meds: bactrim, doryx, amantadine, amox, minocycline, tetracy, roxithyromycin. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, cats claw
FEELING GREAT THESE DAYS! Hang in there - it does get better.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 3/30/2018 10:24 PM (GMT -6)   
Yup. I basically can't stop taking antibacterials or it comes back worse than before. It's horrific. I find that knotweed does a good job at holding it back and I guess I will just be on that until I figure out how to eradicate this thing once and for all. But usually it comes back full force 3-7 days after stopping. A single dose will calm it down pretty good. But that's temporary. Ultimately over several months it tends to calm down again on its own in my experience. Or i just stick on the antimicrobials and that puts it back in its place. This last time going back on knotweed I just told myself I was treating til the end. Every time I stop I get worse than before and symptoms in New places. Not the least of which is the horrific burning nerve pain

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 3/30/2018 11:35 PM (GMT -6)   
doxy has anti inflamatory properties so it calms down an autoimmune reaction your body has towards the nerves.

it also kills borreliax but the immediate effect you feel is this antiinflammatory one.

/www.ncbi.nlm.nih.gov/pmc/articles/PMC3697124/

L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 3/31/2018 1:19 AM (GMT -6)   
I am the same. I took 1 year antibiotics and the pain was not so terrible. I stopped them and after 2 months symptoms were koming one by one again. I had pain crises that i havent felt since years. So now i am again on protocol.
My pain i think is also neuro.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 3/31/2018 1:51 AM (GMT -6)   
L.Botev said...
I am the same. I took 1 year antibiotics and the pain was not so terrible. I stopped them and after 2 months symptoms were koming one by one again. I had pain crises that i havent felt since years. So now i am again on protocol.
My pain i think is also neuro.


That could be a relapse
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

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 3/31/2018 2:58 AM (GMT -6)   
i relapsed on antibiotics, so ... smile

i think it cycles, like in MS, u have 6-8 months of no disease activity. then ...bang. u have a flare.
then u are left with neuro damage for a few months, your neurons heal most of the time, then u have 3-4 months of no symptoms at all. then .... bang again !

i noticed no difference if i am on or off antibiotics, on or off herbs, the flares do happen regardless. what i did notice that while on antibiotics the flares are less intense, so i can continue work i just have pains for a week or so. but this is because the antibiotics are anti inflammatory. has nothing to do with killing anything.

for example mino is known to slow MS disease progression
www.nejm.org/doi/full/10.1056/NEJMoa1608889

what we need is something that kills the lyme bacteria and only lyme, and it hits it hard. i would really try disulfiram next... i wonder if i can get a MD give me a prescription based on two papers showing it has very high activity against borrelia

/www.healingwell.com/community/default.aspx?f=30&m=3743568

havent heard anything from K. Lewis' team in a year now.... they should publish someth soon ... they get money from GLA, so they need to produce some results ... they were in the process of testing disulfiram on mice ...

L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 3/31/2018 4:23 AM (GMT -6)   
mpost that is very interesting oppinion, but years ago i had 3 years in a row when i felt awfull every single day with strong crises almost every day.
By me symptoms (pain spots) were unlocking one by one in around month between every one.
Then i felt better (again hurts but much much less) for more than year and now suddenly it has unlocked again "not so horrible for now" but still strong apin. I noticed again unlocking one by one but this time for a 2 week almost all of them.
It is definatly a very strange and complexe illness.
Now again it very odd - i have moments when i feel very good and after that again bad and so on. It is madness.
Buhner sudgest Gou-Teng (Uncaria rhynchophylla) for nerv pain but it is impossible to find it here. Can you suggest some herb that will help.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 3/31/2018 8:08 AM (GMT -6)   
I've never tried doxy so I can't comment directly, but my personal experience does not agree with the antiinflammatory theory. My nerve pain has been stubborn to most antiinflammatories. It's only the antibacterials that seem to do anything and only after a nice pleasant herxheimer. But my disease also does not cycle so I guess everyones in a slightly different boat. As long as I'm on antibacterials I only have very very very minor flares.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2165
   Posted 3/31/2018 8:36 AM (GMT -6)   
Thanx everyone. The weird thing is i feel great otherwise. Mind is super clear. Anxiety good. Energy great. Only reason i went back on the doxy was we figured it was the lyme causing the trigrminal neuralgia. And the gralise had been totally controlling the periphersl neuropathy so i cant imagine why it would be back with a vengeance now while still on the gralise.

Thinking of asking her if i can go back on roxid which also crosses the brain barrier and i had good luck with before. Gonna have to get off the doxy anyway cuz our beach months are coming up. Lol.
Prior moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: neurontin, cymbalta, Prior meds: bactrim, doryx, amantadine, amox, minocycline, tetracy, roxithyromycin. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, cats claw
FEELING GREAT THESE DAYS! Hang in there - it does get better.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 3/31/2018 6:27 PM (GMT -6)   
L.Botev said...
mpost that is very interesting oppinion, but years ago i had 3 years in a row when i felt awfull every single day with strong crises almost every day.
By me symptoms (pain spots) were unlocking one by one in around month between every one.
Then i felt better (again hurts but much much less) for more than year and now suddenly it has unlocked again "not so horrible for now" but still strong apin. I noticed again unlocking one by one but this time for a 2 week almost all of them.
It is definatly a very strange and complexe illness.
Now again it very odd - i have moments when i feel very good and after that again bad and so on. It is madness.
Buhner sudgest Gou-Teng (Uncaria rhynchophylla) for nerv pain but it is impossible to find it here. Can you suggest some herb that will help.


Can you take lion's mane or Chinese senega root? Buhner says they can restore nerve damage if taken long term. If the pain is from nerve damage, it may work but will take a long time. If it's from ongoing infection, you likely need more - maybe knotweed and cat's claw.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2165
   Posted 3/31/2018 8:58 PM (GMT -6)   
Still so puzzled. I do take cats claw everyday.
Prior moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: neurontin, cymbalta, Prior meds: bactrim, doryx, amantadine, amox, minocycline, tetracy, roxithyromycin. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, cats claw
FEELING GREAT THESE DAYS! Hang in there - it does get better.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 3/31/2018 10:08 PM (GMT -6)   
springsjean said...
Still so puzzled. I do take cats claw everyday.


Could the Cats claw be causing toxins from die off ?
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

L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 4/1/2018 8:08 AM (GMT -6)   
WalkingbyFaith - thank you for the advice smile

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2165
   Posted 4/1/2018 8:26 AM (GMT -6)   
I dont think so cuz i take it regularly for years as maintenance. Wondering if it could be a change of seasons herx. But i can tell my arms and legs are still on fire! πŸ€ͺ

HOPPY EASTER EVERYONE!! 🌸🐰πŸ₯šπŸ₯🌷
Prior moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: neurontin, cymbalta, Prior meds: bactrim, doryx, amantadine, amox, minocycline, tetracy, roxithyromycin. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, cats claw
FEELING GREAT THESE DAYS! Hang in there - it does get better.
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