Lyme + Bart - neuropathy getting worse?

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PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 11/14/2017 6:38 PM (GMT -6)   
Hi all, new here. I've lurked for a while reading threads and feeling comforted that I'm not alone. I have others in my life affected by this disease, but they haven't struggled quite like I have. So while they're empathetic and always listen, their experience is limited.

Background: Diagnosed with lyme as a child, it came back about 8 years ago, in my mid-20's. Treated with various abx for a few years through a LLMD, transitioned to herbals, and enjoyed an asymptomatic period. Fast forward to last year (early 30's), and I had some fog creep in and decided to try pulsing to clear out my system. Well, that triggered some new symptoms I didn't feel previously, starting about 6 months ago.

Over the past 6 months, I have been on a lot, not all at the same time, but the list includes Minocycline, Rifampin, Nystatin, Diflucan, Itraconazole, sida acuta, houttuynia, and a whole lot of supplements. Currently on Mino, Rifampin, and Nystatin. At some point during this phase of treatment I developed some neuropathy. This is something I haven't experienced previously, so I'm a bit scared, and looking for some moral support and advice.

The neuropathy I experience is a skin sensation. It's almost like pin-pokes, skin tingles, or a crawling sensation. This started on my legs, and I've had surface muscle twitches on my legs as well. I added some supplements to help with nerve repair (CoQ10, Carnitine, NT Factor), and this seemed to reduce the "intensity" of the issue. I'm not sure if this has masked symptoms, or actually healed them. However, as of late, I seem to be noticing neuropathy symptoms on my skin in other areas of my body (arms, core, face, scalp). The other areas of my body tend to be a bit more of an "itchy skin" sensation, although some of it is minor pin-pokes as well, while my face seems to be more of a "tightness" feeling. This "expansion" of neuropathy started around the time that I added Rifampin about 1-1/2 months ago, coincidence or not. Immediately after starting Rifampin I noticed that the leg neuropathy became more persistent, triggering me to add in the nerve supplements. It has gradually expanded since then.

The expansion of the neuropathy is mainly what has me concerned, scared of what could be coming next. Given that Rifampin targets not only Bart, but also cyst lyme, I'm not sure what bug (or bug die-off) might be causing this. I was hoping treatment would stop this stuff in it's tracks, rather than getting worse.

Long story short, Have others have similar expansion of neuropathy symptoms while on treatment for Lyme/Bart? Hoping I'm not in for another 2-3 year slog on abx...

Sheeks175
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Date Joined May 2016
Total Posts : 284
   Posted 11/14/2017 7:07 PM (GMT -6)   
Hi PNWBoarder. I am a PNW skier. Went up to Stevens a lot last year. Skiing with lyme is not near as fun as it used to be before lyme.

I would say that you most certainly have bartonella. Rifampin + Mino is a great bart treatment and sida acuta + houttuynia are bart herbs. I am guessing based on your protocol you see LLMD M.R. in Seattle?

From what I have seen, some say rifampin can treat cyst lyme, some say it can't. I don't think it is used often for treating cyst form, so this would also lead me to believe that you have bart.

I don't know what to say about how long it will take you. No one really knows, and I am still in the middle of my battle too.

Are you pulsing or taking the abx continuously? Maybe consider another switch to another bart protocol, like a quinolone + doxy/mino or doxy/mino + zithromax/biaxin. See if that helps you make forward progress.

PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 11/14/2017 7:22 PM (GMT -6)   
Thanks Sheeks. I'm a Steven's regular as well, have had a seasons pass there for the past 8 years or so. Thankfully my on-hill experiences haven't been too diminished the past few years, but this one might turn out to be a bit different. I'm trying to remain optimistic, first day on the mountain will be this coming weekend down at Timberline. And correct on the LLMD, have had good experiences thus far. Not many around.

I'm not currently pulsing. We're looking at changing up abx protocol, but I've got too many moving pieces at the moment. Adding some bio-film treatment. I'm happy to see that my PN symptoms have been reducing in intensity, it certainly helps my day-to-day. Just concerned that I'm noticing them in more places.

Post Edited (PNWBoarder) : 11/14/2017 5:25:29 PM (GMT-7)


Girlie
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Date Joined May 2014
Total Posts : 33927
   Posted 11/14/2017 8:25 PM (GMT -6)   
Hi PNWBoarder - welcome!

I think you should stick with Bart treatment longer - you haven't been on very long.
I agree that it sounds like Bart.

I have had my neuropathy flare more since Bart treatment.
So while it resolved several symptoms, my nerve pain is worse - instead of just flaring late afternoon/evening for several hours, it now shows up anytime of the day.

I am now treating Babesia because I know an untreated infection can hold back treatment of another.

So your treatment first time around was for 2 -3 years?
Was it with same LLMD?
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

PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 11/14/2017 8:47 PM (GMT -6)   
You hit the nail on the head Girlie. Before I started rifampin, the PN was only for a few hours in the afternoon. Usually about 2 to 5. Starting rifampin, it jumped to almost all day. It still clears up in the evenings.

First time around was probably 2 years on abx, followed by probably another 2 on samento and banderol. A few years off, then another year or so taking B&S off and on, usually 3 months on, 3 months off. Then I tried pulsing and ended up where I'm at.

I started seeing a LLNP in the same practice at first, but she stopped seeing patients and I transferred to my current LLMD. I was not really treated for bart then. I didn't have any of these nerve symptoms, primarily fog and memory issues.

I do recall making significant progress on one abx during that initial treatment but had to stop because of liver issues. Unfortunately I didn't keep my notes from back then, so I don't recall what that was. Wondering if it was something that treats bart...

Girlie
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Date Joined May 2014
Total Posts : 33927
   Posted 11/14/2017 8:58 PM (GMT -6)   
My nerve issues used to come on around 4:00 pm and last for several hours and then I'd be fine later evening.

Now - it can be first thing in the morning or start around noon - but definitely longer in duration.
Mine always clears in the evening too! But generally not until 8:00 or 9:00.
Then I often stay up late because it has finally resolved and want to feel 'normal' for a few hours before going to bed.

Interesting that you experience a similar progression and pattern.
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
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Date Joined May 2014
Total Posts : 33927
   Posted 11/14/2017 9:00 PM (GMT -6)   
I tried Bactrim and it really flared the neuropathy - didn't know if it was a herx or reaction to the med.

Freaked me out so I stopped 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

Rikky1
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Date Joined Jun 2015
Total Posts : 2924
   Posted 11/14/2017 9:53 PM (GMT -6)   
If you went to Dr. J in DC he'd immediately put you on a Babesia protocol and give you stuff to suppress your nerve pain. Since the nerve stuff is all over the place it sounds like its emanating from your brain.

Note the Rifamycin class, Floroquinolones class and Bactrim are the only abx's that are proven to hit Bart. All others are 'suspect' per Dr. J.

I'm wondering if Babesia is holding you back. Have you ever tried treating it?

PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 11/14/2017 10:10 PM (GMT -6)   
Never tried anything for babesia either. I've been asked questions to assess for that, but not much resonates with me. I guess I wouldn't be surprised, I was bit by countless ticks in SE PA as a kid.

PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 11/14/2017 10:41 PM (GMT -6)   
Girlie said...
I tried Bactrim and it really flared the neuropathy - didn't know if it was a herx or reaction to the med.

Freaked me out so I stopped it.
I tried bactrim for a few days and developed itchy skin. I was not feeling any neuropathy symptoms at that time. Stopped taking it right away out of concern that I was having an allergic reaction.

PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 11/15/2017 1:32 PM (GMT -6)   
Another item that I have, complicating this whole mess:

i have had a white tongue for quite some time now. That's why I added a nystatin rinse and diflucan, followed by itraconazole for a period of time, - to treat yeast. They didn't make a difference. Coincidentally (or not), during these treatments is when my neuropathy surfaced, and for a while I attributed those symptoms to the medications, as many of the 'azole' medications, especially itraconazole, have been linked to peripheral neuropathy. I'm still thinking those medications could have caused some PN, which is being exacerbated by my bart treatment... I really don't know, and neither does my llmd.

My llmd has been aware of this tongue issue, and suggests that it's not yeast, but I am struggling to find another cause. Not much more info available on here, aside from Candida and maybe some other misc. bacteria. I scrape a significant film off of it regularly, but the white color remains. I took sacroB for a while, and recently switched to a caprillic acid based supplement to see if that makes a difference. Still on nystatin and regularly take probiotics. I have read that yeast can exacerbate, and even cause symptoms, including PN, by dumping toxins into the body. Might look into some oil pulling to see if that can help clear things up.

might look into mold as well...

Post Edited (PNWBoarder) : 11/15/2017 11:37:16 AM (GMT-7)


WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2040
   Posted 11/15/2017 3:30 PM (GMT -6)   
PNWBoarder said...
Another item that I have, complicating this whole mess:

i have had a white tongue for quite some time now. That's why I added a nystatin rinse and diflucan, followed by itraconazole for a period of time, - to treat yeast. They didn't make a difference. Coincidentally (or not), during these treatments is when my neuropathy surfaced, and for a while I attributed those symptoms to the medications, as many of the 'azole' medications, especially itraconazole, have been linked to peripheral neuropathy. I'm still thinking those medications could have caused some PN, which is being exacerbated by my bart treatment... I really don't know, and neither does my llmd.

My llmd has been aware of this tongue issue, and suggests that it's not yeast, but I am struggling to find another cause. Not much more info available on here, aside from Candida and maybe some other misc. bacteria. I scrape a significant film off of it regularly, but the white color remains. I took sacroB for a while, and recently switched to a caprillic acid based supplement to see if that makes a difference. Still on nystatin and regularly take probiotics. I have read that yeast can exacerbate, and even cause symptoms, including PN, by dumping toxins into the body. Might look into some oil pulling to see if that can help clear things up.

might look into mold as well...


Please update us if you start treating mold or find out you have ongoing exposure. Your symptoms sound similar to mine. I have Bart, among other things, and have experienced a wide range of bizarre skin sensations over the years. I also have mycotoxins from mold.

PNWBoarder
New Member


Date Joined Nov 2017
Total Posts : 17
   Posted 11/15/2017 3:59 PM (GMT -6)   
Will do. I'm hesitant to do the mold testing just because of the price involved. My house doesn't have water damage. However, the building I work in had an enclosure remediation done some years ago for water intrusion issues... perhaps there's still some issues lingering in the building. I am generally worse at work than I am everywhere else.

abenamou
Regular Member


Date Joined Mar 2017
Total Posts : 20
   Posted 11/16/2017 4:55 PM (GMT -6)   
Our LLMD has said the exposure doesn't have to be current, and strongly encourages the test (Realtime labs) for all patients. Its not cheap but unfortunately, but probably good to rule things in/out.

JasonSinis
Regular Member


Date Joined Jul 2017
Total Posts : 99
   Posted 11/17/2017 9:38 AM (GMT -6)   
This is an interesting conversation.

Several things that I can relate to.

1. My symptoms almost always stop every evening around 5pm.

2. I am fairly positive my relapse occurred from finishing my basement last summer. I have the biotoxin genetic issue and I just tested the last unfinished portion of the basement for mold. It came back as 500x higher than the reference outside sample for penicillium/aspergillus mold. (Fortunately, I treated the finished part and it was less than the outside reference). But I'm pretty sure working down there each day was my catalyst for kicking up Bart again. I did at home testing, I'm not sure if I'm allowed to say the product, but I like it and tested many areas of the house.

Jason

Rikky1
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Date Joined Jun 2015
Total Posts : 2924
   Posted 11/17/2017 1:37 PM (GMT -6)   
given my experiences with 'mold' being a possible issue for those chronically infected my belief is 95% of people don't have a mold problem and you'll waste thousands of dollars chasing a phantom.

if you are going to go the route of trying to see if mold really is a problem in your house find a company with an industrial hygenist. these guys have advanced degrees in assessing a habitable space and seeing if its safe enough. all these mold testing kits and companies and such are almost all a big scam.

real time lab mycotoxin test is highly controversial and frankly not very useful. if you have toxins in your urine then either your body is doing a good job expelling it or not. its like saying outside is it partly cloudy or partly sunny?

remember lyme and candida both produce mycotoxins so if you're sick you'll have toxins in your body.

JasonSinis
Regular Member


Date Joined Jul 2017
Total Posts : 99
   Posted 11/17/2017 1:39 PM (GMT -6)   
I’m my case I saw mold and certainly could smell it. The test was to verify variety.

Rikky1
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Date Joined Jun 2015
Total Posts : 2924
   Posted 11/17/2017 3:58 PM (GMT -6)   
got it jason but it doesn't matter what matters is the type of mold and whether the amounts are enough to impact human health. only an industrial hygenist can answer that. but still if you see and smell mold its probably something you want to deal with.

PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 11/27/2017 3:46 PM (GMT -6)   
As you Mentioned Rikky, I don't want to spend a ton of money chasing down something that's unlikely. I still haven't proceeded with the testing yet... not to say that I won't though.

My nerve issues have changed a bit... so I have been taking a B-complex for a while, basically since this neuropathy started (4 months?). I started taking at the suggestion of my LLMD since the neuropathy could have been linked to Itraconazole. After starting it, it seemed to make things better for a week or so, then the neuropathy returned and mostly remained unchanged. A few weeks ago I developed a "dead spot" on the bottom of my foot that's remained relatively static. I still have sense of touch, but when standing it feels numb, like a dead spot. I had a similar issue show up on the tips of one of my fingers (that ultimately went away), and at that time I read around that B-6 can be toxic and actually cause neruopathy so I ceased the B-complex about a week ago. LLMD suggested I could stop the B a few months ago as well, but never did.

I noticed an immediate change in symptoms from dropping the B-complex. The next few days the neuropathy followed a different daily trajectory, and the sensations were different. I can't tell if things are getting worse, or better, they're just different for now... I'm wondering if I was having B-6 toxicity issues. I have read that some people may be more sensitive and have reported issues at doses under the typical 100 mg threshold... maybe I'm one of them? Maybe my system is so taxed with Rx and supplements that B-6 was able to build up? Or maybe things are getting worse and the B-6 was helping... This is a shot in the dark, but I'm trying everything here...

anyone else have issues taking B-vitamins?

B99
Regular Member


Date Joined Sep 2016
Total Posts : 95
   Posted 11/27/2017 7:12 PM (GMT -6)   
Have you tested B12? Even if you eat meat, you can still be low. A deficiency can cause neurological problems all over the body.

The normal range for the B12 test is too broad, and most doctors don't realize it. I think it's 300 - 1100 units. I follow the European and Asian guidelines as do many doctors who are thoroughly informed about B12 - supplement if the level is below 500.
College age daughter with chronic Lyme who has was diagnosed two years ago with Lyme, Babesia, Bartonella. We think she was infected two years prior. Her symptoms are mainly neurological. Using antibiotic and herbal protocols.

Girlie
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Date Joined May 2014
Total Posts : 33927
   Posted 11/27/2017 7:28 PM (GMT -6)   
Problem with b12 testing is its measuring what's circulating in the blood but that may not be an accurate indication of what is in our cells?

Someone posted about that awhile back - I think there is a better test for b12 than the 'usual ' one

Sorry I don't have enough information about it.

Mine tested at over 800 - my LLND at the time said "Fill your boots"
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

PNWBoarder
New Member


Date Joined Nov 2017
Total Posts : 17
   Posted 11/28/2017 11:29 AM (GMT -6)   
Through whatever method my PCP's office used, I tested at 470 pg/mL for B12. I was taking the 50mg B-complex supplement at the time. Perhaps I should look at just supplementing B-12?

I am also taking L-acetyl-carnitine, NT Factor, and CoQ10 to help with nerve issues. The list of supplements is much larger than that, but those are the nerve specific things... I do not get much red meat in my diet. Just the occasional (once a month) burger as a "treat".

I'm just frustrated that these neuropathy symptoms seem to be getting worse in some regards, and searching for anything to help before it gets too bad. Perhaps this is something I need to deal with as bart/lyme gets cleared out of my system, but I don't like that answer... lol. Maybe I need to discuss using LDI with my LLMD at my next appointment? Or maybe a stronger abx regimen :sigh:

Post Edited (PNWBoarder) : 11/28/2017 9:40:59 AM (GMT-7)


PNWBoarder
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Date Joined Nov 2017
Total Posts : 17
   Posted 12/6/2017 2:59 PM (GMT -6)   
A few week update, and a new question for anyone willing to chime in...

Since dropping the B-complex, things have continued to change. I don't really feel the more painful skin pin-pokes any more, but have more of a hot/cold sensation... sometimes feeling like sensitive skin, like after a sunburn, and other times it's a cold, kind of "wet" sensation. I had the "wet" sensation years ago, feeling like raindrops, if you will. For those who have had nerve pain relieved, did it just slowly fade, or did different sensations occur during healing? Dr in the past has suggested that things might change as healing progresses, so I'm cautiously optimistic.

Struggling to figure out if this is a positive or negative change. Is this indicative of further damage, or is this indicative of internal healing... Next week is my next llmd appt. trying to get my ducks in a row before I get there... :sigh:

Post Edited (PNWBoarder) : 12/6/2017 1:05:20 PM (GMT-7)


mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 121
   Posted 12/9/2017 12:40 AM (GMT -6)   
PNWBoarder said...
A few week update, and a new question for anyone willing to chime in...

Since dropping the B-complex, things have continued to change. I don't really feel the more painful skin pin-pokes any more, but have more of a hot/cold sensation... sometimes feeling like sensitive skin, like after a sunburn, and other times it's a cold, kind of "wet" sensation. I had the "wet" sensation years ago, feeling like raindrops, if you will. For those who have had nerve pain relieved, did it just slowly fade, or did different sensations occur during healing? Dr in the past has suggested that things might change as healing progresses, so I'm cautiously optimistic.

Struggling to figure out if this is a positive or negative change. Is this indicative of further damage, or is this indicative of internal healing... Next week is my next llmd appt. trying to get my ducks in a row before I get there... :sigh:


I was having burning and/or hyper-sensitive skin sensations on my shins that would come and go, and sometimes last a few days at a time. I also had it on my forearms to a lesser degree. One day it would be burning the next day hyper-sensitivity. Other days I'd get the cold wet sensations like you mention. No rhyme or reason to it. None of it was consistent day to day and sometime after starting abx treatment I realized none of it was happening any more. It has now been a few months without having these sensations. There were not really any other transitional symptoms for me, they were just gone. Everyone is different though, so your progression may be quite different as you heal. Nerve damage is a funny thing.

PNWBoarder
New Member


Date Joined Nov 2017
Total Posts : 17
   Posted 12/11/2017 6:34 PM (GMT -6)   
Dr. MR and I came to a general consensus. I am going to stop germ-killing treatments and see if this neuropathy goes away. We think that this could be caused by my treatment at the moment. I have had positive changes in the past week from dropping B-complex and minocycline. Dropping Rifampin today. Various items that I have taken, and am currently taken, can lead to neuropathies. Perhaps additive? Who knows. Most of my other lyme/bart symptoms are months in the past. Nerve damage was not a symptom before starting treatment. Remaining optimistic to seeing how I'm truly doing and looking forward to a less toxic holiday season. Reevaluating in the new year. :cheers:

Post Edited (PNWBoarder) : 12/11/2017 4:37:09 PM (GMT-7)

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