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Burning skin and bartonella

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Posted 6/21/2021 3:31 AM (GMT 0)

Traveler said...
Thank you, Girlie! But of course I would come back! Hopefully it's not like a bad penny though! 😆
I only hope I was able to be if some help.

Lol!

Yes, that was very helpful!
Posted 6/21/2021 2:49 PM (GMT 0)
Lol! You are much too kind, but t thank you 😁
Posted 9/7/2021 11:53 PM (GMT 0)
Dear Traveler and Girlie,
I've never written here before but the posts you two were a part of several years ago were so helpful to me. I beat lyme and went symptom free for a year and a half after 13 months of antibiotics. Unfortunately, I got a new tick bite about a month ago and think this time I may have gotten bartonella as the symptoms are different from my lyme ones and speak to bartonella. I'm seeing my lyme Dr next week but am shocked at how many symptoms I have in only a month. I'm scared. Can I get through this all again?
Posted 9/8/2021 2:28 AM (GMT 0)

KatieWood said...
Dear Traveler and Girlie,
I've never written here before but the posts you two were a part of several years ago were so helpful to me. I beat lyme and went symptom free for a year and a half after 13 months of antibiotics. Unfortunately, I got a new tick bite about a month ago and think this time I may have gotten bartonella as the symptoms are different from my lyme ones and speak to bartonella. I'm seeing my lyme Dr next week but am shocked at how many symptoms I have in only a month. I'm scared. Can I get through this all again?

Hello, Katie!

Yes, you certainly can get through this again !
You have caught it early…hopefully your Dr will prescribe antibiotics that will treat lyme and Bartonella.

What are your symptoms this time ?
Posted 9/8/2021 9:38 AM (GMT 0)
Hi Girlie,
Thank you so much for writing to me.
I found a scab on my back on August 4th. No tick but it was unusual and made me think twice. At the time I had a minor cold from one of my kids and so on the 6th when my muscles started aching I assumes it was the virus. By the following week my leg muscles were killing and my right knee and then my arms and legs were burning like I had a sunburn but I didn't. I went to my lyme Dr but still was stupid and I thought it was viral as I felt so different than I did with lyme. Once it clicked that this might be lyme I called my lyme Dr and she called in 2 weeks of bactrim and cefdinir as she was about to leave for vacation. I've been on those about a week and a half now with little improvement (some herxy feelings here and there but nothing that made improvements) not in the way I would expect for a relatively new bite/case. Other symptoms I'm having: general malaise, intermittent nausea, all joints feel poppy, bottoms of feet hurt most mornings not all, burning feeling in arms and legs intermittently, one episode of vertigo. I feel honestly quite different from lyme. I feel "sicker" just overall unwell. Lyme for me was a ton of pain but not malaise fatigue etc. Tons of muscle twitching happening etc. I think this could be bart and I'm just not on the right drugs. I have to assume that was a tick bite on my back because I had been 100% symptom free until then since February 2019. Do you have any thoughts? I'm so sorry for how long that was. I'm scared. Again mostly at how bad I feel so quickly.
Posted 9/8/2021 8:35 PM (GMT 0)
Hi Katie!
Welcome to the community, although I'm so sorry you have need of it.

And thank you for your kind words! This forum saved my life, then saved my sanity after my second set of reinfections. I've been reinfected once more (this year), had the bull's eye rash (my first!!), and managed to get adequate treatment quickly.

Honestly, I'd question if you have Neuro Lyme again along with Bartonella. The burning feet is a 'classic' sign if Bartonella, so there's not much doubt there. The burning skin and a few other symptoms suggest neurological involvement, which could be just Bartonella, but because you are experiencing so many Neuro symptoms already, I'd suggest that you get checked for Lyme as well.

You may need to treat both infections at the same time (if your body is up for that kind of a fight) or stagger the start of one of the treatments, in order to feel much relief, if my suspicion is right (and you have both the infections).

Are you detoxing? Not enough detoxing can mean that you don't feel the symptoms easing, because toxins can (and usually do) build up in our bodies during treatments.

Do be sure to get back in touch with your LLMD as soon as you can and let her know what's going on.

And please do keep in touch with us here!
Posted 9/13/2021 8:37 PM (GMT 0)
Dear Girlie and Traveler,

Thank you for writing to me. I really appreciate you two.

I saw my lyme doctor this morning. While she doesn't know what is going on, she did prescribe biaxin and rifampin. She agreed the symptoms sound like they could be bartonella and she is running an Igenex bartonella immunoblot, will have results in a few weeks.

I tried hard to explain the symptoms, and explain to her that I feel different than I did with lyme. With lyme, the symptoms came on relatively slowly (didn't feel like it at the time) but I would get one or two news ones each month. So by the time I figured it out 8 months later I was really sick. In contrast, this time, whatever set this off (a bite of some kind I guess) was only 5 weeks ago, and I already have so many symptoms. Part of me wonders: is it because bartonella replicates everyday vs borrelia being every 4 weeks or whatever? Maybe I'm over thinking here, I just am someone who really likes to understand what is happening and why, it helps with my anxious mind.

I also am obviously not God and so I do not know what I have, but the symptoms do seem to align with bartonella, sunburn type feeling/neuropathy inside arms and legs, bottom of foot pain especially, but also have other symptoms - muscle pain, back pain, neck muscle pain, intermittent nausea and vertigo. One thing is for sure, the cefdinir and bactrim I took for the last two weeks didn't do a lot to help.

Do either of you have any thoughts? I'm sorry to be a bother. It is so hard to go through this again. I have two young kids and they already struggled with a sick mommy for several years. I also have a hard time believing this is a relapse because I was 100% well for 2.5 years, I realized it was Feb 2019 that I got off everything (I thought it was only 1.5 years!), and also the symptoms are different. Of course I had muscle pain with lyme but the other things just feel different...

I'm sorry I'm babbling so much.
Katie in Massachusetts smile
Posted 9/13/2021 8:55 PM (GMT 0)
Hi Katie,
First of all, you are not a bother! This can be an unnerving situation even for someone that has been reinfected several times like myself. Trying to understand what you have is a good thing!

And when I mentioned that you could have Lyme as well, I was thinking of a reinfection, not necessarily a relapse. It's well known that ticks can carry more than one infection at a time. It's just something to keep in mind, as it would explain the remaining symptoms.

And I so understand your situation with your young children. It truly can be hard. My kids have never known me as a healthy person. I have had Lyme and company for most of my life, between just not being diagnosed in a timely manner, and getting reinfected. I was reinfected yet again this year, fortunately I got a bull's eye rash and was able to get into treatment quickly, as I'm also dealing with an unknown medical condition this year (they are still trying to figure out what's happening).

Do be sure to detox well, as that can really limit the impact of these infections and treating them has on your day to day life.

And please keep us informed on your tests results and how treatment is going.
Posted 9/13/2021 10:30 PM (GMT 0)
Nausea and vertigo could be babesia.
Posted 9/14/2021 4:59 AM (GMT 0)
Just want to chime in that you don't need to have gotten bartonella from a tick bite - fleas, sand flies, cat scratches, body lice...many vectors for this illness, though of course always good to be aware of the possibility of lyme! Glad your doctor has you on rifampin smile
Posted 9/22/2021 10:02 AM (GMT 0)
Traveler, can I ask you a question?
How did you mentally cope with reinfection? It is really messing with my head to have fought this battle once and then to get a new tick bite and have to fight again when everyone around me has never done it once. I'm not trying to have a pity party but I'm trying to understand so I can cope. Or maybe is it just crap happens?

Post Edited (KatieWood) : 9/22/2021 4:09:23 AM (GMT-6)

Posted 11/3/2021 9:59 PM (GMT 0)
Hi Traveler and Girlie,
I hope you two see this post. I wanted to check back in with you both on what is going on with me, and where I am at to try to get some feedback/thoughts from you both.
I got a new tick bite, if you recall, at the very end of July, beginning of August. Took me about a month to really understand what happened as I didn't see the tick, just a bloody scab on my back. Symptoms came on very fast and worse by the day. By the time I started treating about 1 month post tick bite, I was already herxing pretty badly.
My doctor tested me for bartonella as I was having burning skin and foot pain, and that came back from Igenex positive for 2 strains. I have been on bactrim, rifampin (not yet to full dose, on 3 of 4 pills a day, and cefdinir) all together for about 6 weeks now. Definitely have been having some herxing, and some things have improved. Some things haven't very much. I had a few (like 5) low symptom days about 2 weeks ago. Now i'm in the throws of my period and my symptoms are way up (including some I thought were permanently gone) so now I'm pretty despondent honestly. I'm going back and forth between ok is this just a giant period flare up, or am I missing something? Could I have babesia? My main symptoms that really bother me and come and go are: sometimes nausea, leg muscle pain, foot pain soles of feet, transient tooth/face pain, back pain.....
I mean maybe the reality is that even though I only had this a month prior to treating this is still early days and it will take a long time to eradicate, I'm just struggling to understand, and I hate this. Anyway, if you have any thoughts I'd appreciate it smile I do not get sweats/air hunger/chills any REALLY obvious babesia symptoms BTW not sure if that even means much. Thank you so much, Katie
Posted 11/4/2021 12:28 AM (GMT 0)

Traveler said...
I was reinfected yet again this year, fortunately I got a bull's eye rash and was able to get into treatment quickly, as I'm also dealing with an unknown medical condition this year (they are still trying to figure out what's happening)

Are you treating with Chronic Tonic this time as well? Curious if it's going to work for you again!

I've heard from some doctors that bull's eye rash only happens when you are re-infected / bitten again. I think it was Klinghardt saying it if I'm not mistaken. That would explain why so many people didn't get bull's eye rash the first time.
Posted 11/4/2021 11:14 AM (GMT 0)
Katie

i would say just hang in there and keep dong what you are doing

bartonella is notorious for being slow to respond to abx - and can take several months.

the fact that you have had some better days already is promising

the flare that has occurred around your period is a common feature of both lyme and bart - and once this passes you may have a better idea of where things stand

try not to over think it in the meantime

perhaps just focus on other things you can do to help your body calm and recover
-stress reduction like yoga, meditation or walking in nature can be a big help
-making your diet as calming and unreactive as possible can help a lot also
( my partner had bart and lyme and flared around her period each month and often her gut would flare and bloat at the same time - helping her gut helped her emotional flares dramatically )
Posted 11/4/2021 11:16 AM (GMT 0)

wladek83 said...

I've heard from some doctors that bull's eye rash only happens when you are re-infected / bitten again. I think it was Klinghardt saying it if I'm not mistaken. That would explain why so many people didn't get bull's eye rash the first time.

wow! - that's a new one on me wladek - that guy certainly has some novel ideas - wonder if there is any real evidence for this one of if its just a theory that kind of fits the facts ( there s a lot of that in the lyme world)
Posted 11/4/2021 9:53 PM (GMT 0)

Garzie said...
wonder if there is any real evidence for this one of if its just a theory that kind of fits the facts ( there s a lot of that in the lyme world)


Short answer to your question: I am not aware of real evidence to back that claim.

Longer answer: it's hard to say for sure. I've been employed by the "Lyme Disease corporation" ;-) for the past 3 years, spending 6-12 hours every day studying it, researching forums/FB groups/books/Pubmed/Wiley/etc. Sometimes things that are scientifically proven to work - don't work for me. Then, things that are not supposed to work or are currently at the stage of gossips - help significantly. Same antimicrobials and protocols work differently for different people. Perhaps bull's eye rash theory is a hoax. Perhaps not. Wish I could have known more.
Posted 11/4/2021 10:50 PM (GMT 0)

wladek83 said...
Sometimes things that are scientifically proven to work - don't work for me. Then, things that are not supposed to work or are currently at the stage of gossips - help significantly. Same antimicrobials and protocols work differently for different people.

You just said it better than anything I have ever heard. That’s why open mindedness and experimentation are usually necessities when dealing with this illness, at least in the chronic form.
Posted 11/5/2021 10:44 AM (GMT 0)

wladek83 said...

Short answer to your question: I am not aware of real evidence to back that claim.

Longer answer: it's hard to say for sure. I've been employed by the "Lyme Disease corporation" ;-) for the past 3 years, spending 6-12 hours every day studying it, researching forums/FB groups/books/Pubmed/Wiley/etc. Sometimes things that are scientifically proven to work - don't work for me. Then, things that are not supposed to work or are currently at the stage of gossips - help significantly. Same antimicrobials and protocols work differently for different people. Perhaps bull's eye rash theory is a hoax. Perhaps not. Wish I could have known more.

thanks wladek - i know exactly what you mean - and i don't altogether discount the idea - after all if there were no new ideas knowledge wouldn't really move forward - but i was just curious if there was anything out there as documented evidence we could look at so we might form a more informed opinion one way or another.

i am in the same boat - have been a full time member of the "Lyme disease corporation" for over 6 years now - so much research done and knowledge gained - i don't think i have ever studied so long or hard - and no salary from it as yet!
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