New pain in knees

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notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/27/2017 10:32 AM (GMT -6)   
Hi All,

Brief summary--about 5 years ago I crashed hard, which led to a diagnosis of confirmed Babesia, probable Lyme. Most likely originating from a tick bite I'd received more than 20 years before. After more than 1.5 years on antibiotics and herbs, other supplements, I started to get my health back. Got bit again. More antibiotics.

Got bit AGAIN in March of this year. Stupidly I didn't get right back on abx. This tick couldn't have been on me more than 10 minutes--since my diagnosis I always shower immediately upon coming in from outdoor activities. It was embedded, but couldn't have been embedded for more than 10 minutes, max. I started to slide slowly downhill again, which led to a CDC-positive for Lyme confirmation via Western Blot. Started herbal treatment under direction of my wonderful naturopath, along with self-medication with Amoxicillin, in August.

By November, I wasn't progressing very fast. Lots of anxiety, insomnia, depression symptoms persisting, but no pain. Made the 1.5 hour trip back to my LLMD in late Nov., as I was about to run out of the Cymbalta I'd been on since my initial diagnosis. As I had to make the trip anyway, I figured I'd look into abx. Have been on Clindamycin and Minocycline for a little over a month now. Still also doing CSA, Sweet Annie, Houttonyia, Teasel, and supportive vitamins, minerals, etc., along with Grapefruit Seed Extract for cysts. Started to feel MUCH better psychologically after about 3 weeks on this regimen. Doc refilled the abx. for another month, and encouraged me to choose a couple of biofilm-busters to add to the regimen.

After doing a bit of research, I chose the cheapest options I could find--Xylitol and Lactoferrin. about 2 days after adding these two, I began to experience intermittent joint pain. Mostly my knees, though I feel occasional twinges in my shoulders, hips, etc. But the knee pain has gotten so severe over the past couple of days that it wakes me up/keeps me awake. And I was JUST starting to get normal sleep again after brain-related insomnia started to clear! I only got two hours of sleep last night--just in time for going back to work after a blissful (and very rare!) five days off!

Questions--what do you all recommend for the joint pain so that I can get better sleep? Been using Naproxen and it seems to do nothing. Should I ask my LLMD for an RX?

Do you think this is related to the biofilm treatment? I hadn't experienced any pain with this go-round with Lyme until I added the Xylitol and Lactoferrin in. All symptoms were brain-related previously. If so, what does the joint pain mean? Are the critters setting up biofilm-protected colonies in my knees/joints for some reason, and these are being broken up? Would this cause pain? Is this a good sign?

Post Edited (notquitesoscared13) : 12/27/2017 8:39:13 AM (GMT-7)


mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 12/27/2017 10:58 AM (GMT -6)   
Celebrex is what helped most for my joint pain.
Quest Elisa Lyme positive 2/2017
Igenex Lyme WB igm positive 3/2017 and July '17
Quest Ehrlichia positive 3/2017 neg. July '17
Igenex Bartonella positive 4/2017 neg. July '17
CD57 30 in 4/2017 12 in July '17

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/27/2017 11:27 AM (GMT -6)   
Is Celebrex an rx?

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 12/27/2017 11:28 AM (GMT -6)   
yes
Quest Elisa Lyme positive 2/2017
Igenex Lyme WB igm positive 3/2017 and July '17
Quest Ehrlichia positive 3/2017 neg. July '17
Igenex Bartonella positive 4/2017 neg. July '17
CD57 30 in 4/2017 12 in July '17

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/27/2017 2:17 PM (GMT -6)   
Thank you. Anyone have any input re WHY I would all of a sudden be experiencing this pain in my joints?

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/27/2017 2:21 PM (GMT -6)   
Lyme pain can rove around. Sometimes there is no explanation for lyme symptoms.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/27/2017 2:27 PM (GMT -6)   
Yes - the lactoferrin and xylitol for biofilms most likely released the 'bugs' and caused the new pain.

That combo is what Dr J uses and he combines it with at least two abx to kill what is released.

It is a powerful 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

Post Edited (Girlie) : 12/27/2017 12:35:15 PM (GMT-7)


mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 12/27/2017 2:28 PM (GMT -6)   
I asked the LLMD that question, and he said, as PeteZa says, that's what happens ... it roves around.
Quest Elisa Lyme positive 2/2017
Igenex Lyme WB igm positive 3/2017 and July '17
Quest Ehrlichia positive 3/2017 neg. July '17
Igenex Bartonella positive 4/2017 neg. July '17
CD57 30 in 4/2017 12 in July '17

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/27/2017 2:32 PM (GMT -6)   
Thanks for the input. So should I consider this a positive sign, then? The biofilm busters are doing what they're supposed to do, and the antibiotics should kill off the bugs that are newly released?

I'm debating whether to call the doc for an rx-strength painkiller...
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.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/27/2017 3:02 PM (GMT -6)   
Notquit, have you tried ibuprofen? Ice packs? Heat?

I always go with home methods before I reach for a script. But, I don't know your pain tolerance or how badly it hurts.

Some try Arnica and that works for them. I have a script for Diclofenac sodium topical gel 1% and that takes the edge off of knee pain. It is like a topical ibuprofen.

Ice is generally my go to for lyme pain. It is what has always worked for my body. But, we are all different. Heat might be what works for you. Heat stirred up the bugs and they went crazy in me. I could not even take a hot shower.

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/27/2017 3:18 PM (GMT -6)   
I've just tried the Naproxen, no heat, ice or ibuprofen. Maybe I'll try some ibuprofen tonight, and see if that helps before calling for an rx. I can also give ice and heat a try. The pain does seem to be getting more constant, though. Right now both knees are aching as I'm just sitting here at my desk at work.
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.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/27/2017 3:20 PM (GMT -6)   
Ah ha! I know your problem.... it's work!

Just kidding. Sorry you are at work though.

Hope it gets better with the ice.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/27/2017 3:21 PM (GMT -6)   
notquitesoscared13 said...
Thanks for the input. So should I consider this a positive sign, then? The biofilm busters are doing what they're supposed to do, and the antibiotics should kill off the bugs that are newly released?

I'm debating whether to call the doc for an rx-strength painkiller...


If you're hurting - you need to try and up your detox. Do you take epsom salt baths?
That helps with my pain usually.

So, you are still taking the clindamycin and minocycline?
That is the theory, yes, that the biofilms are opened and the abx will clean up.
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

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2009
   Posted 12/27/2017 6:18 PM (GMT -6)   
You mentioned Teasel in your regimen. I believe that's one of the herbs Buhner recommended for joint pain/Lyme arthritis. Maybe you could try increasing your dosage and see if it helps any.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/27/2017 6:23 PM (GMT -6)   
WalkingbyFaith said...
You mentioned Teasel in your regimen. I believe that's one of the herbs Buhner recommended for joint pain/Lyme arthritis. Maybe you could try increasing your dosage and see if it helps any.


I've read that Teasel is a cyst buster - maybe it's not a good time for it (if it is a cyst buster)

I'll see if I can find anything on it
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 : 33852
   Posted 12/27/2017 6:25 PM (GMT -6)   
Here's something about Teasel

www.tiredoflyme.com/teasel-root.html
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 12/27/2017 7:29 PM (GMT -6)   
Ah, so it sounds like the Teasel is helping to draw out more hidden spirochetes. So maybe I shouldn't up it right now, then. And yes, I'm still taking both Minocycline and Clindamycin, as well as CSA, Teasel, grapefruit seed extract, Houttonyia and Sweet Annie. Oh, Japanese Knotweed and Cat's Claw, too. And Olive Leaf Extract to help control a very high viral load. So I've got plenty of stuff on board that should help to kill any bugs being driven out of their hiding places.

My mental outlook is brighter, in any case, which is a huge relief! I can tolerate pain as long as my mental outlook is out of the basement that this newest infection had started to drag me back down into. The anxiety, darkness and depression are the worst symptoms that these diseases have put me through thus far. With a lessening of those symptoms, I have more energy to fight the physical stuff.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/27/2017 10:32 PM (GMT -6)   
My husband had hard time with anxiety. He felt like he should be doing something all day long. It was like he was in overdrive.

I had depression and just wanted to cry a lot.

Thankfully both of our yuckie symptoms did not last long.

So glad you have more energy and so glad you are not down in the dumps.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1301
   Posted 12/27/2017 10:34 PM (GMT -6)   
See if you can find a doc who uses ozone. Get some ozone injections in knees-most likely 1-3 injections and you will be cured.

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/28/2017 5:59 AM (GMT -6)   
Injections in the knees? Don't like the sound of that. Two extra-strength acetamenophen pm's allowed me to get 5.5 hours of uninterrupted sleep last night, though. Yay!
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.

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1301
   Posted 12/28/2017 6:17 AM (GMT -6)   
Ozone injections in knees really works wonders and most likely you would cure you bad knees. Ive seen it work so many times

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/28/2017 10:29 AM (GMT -6)   
I'll do some research into the ozone injections, but for the most part my knees aren't the most problematic part of this whole nightmare. The pain is only occasional, and much easier to deal with than the anxiety/depression issues. But I'll do some research into it.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/28/2017 11:19 AM (GMT -6)   
Notquite, you do know that anxiety, depression, brain fog, etc can be attributed to candida, don't you?

That is why one of the first things a lyme patient has to do is clean up their eating.

Antibiotics are so good at helping people get candida and it is such a sneaky infection.

notquitesoscared13
Regular Member


Date Joined Oct 2013
Total Posts : 428
   Posted 12/28/2017 2:10 PM (GMT -6)   
Yep, yep. Know all about candida and its nasty effects. And I've been pretty lax around the holidays re my gluten-free and dairy-free, low-sugar diet, too. sad I'm sure I have some candida on board adding to the misery, for certain. I'm on a quality probiotic, and I'm planning on getting back to a stricter diet after New Year's. Hopefully the combination of that and all of the meds and herbs I'm on, plus quality vitamins and minerals--hopefully those'll continue to put me on a healthier track.
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.
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