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Lyme Disease
Bartonella
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Posted 6/14/2024 10:48 PM (GMT 0)
Oh gosh . So u are not battling Lyme or tick born illness ? Sorry I’m confused . And also the statement that people do die is really scarying me . I have had some treatmnets but not steady . Like this . I had Lyme 19 years ago . But now Lyme test is neg . And babesia . But positive for Bart . I was bitten by a feral cat and then I got very sick . But didn’t think anything of it ? Thought I had flu or withdrawels . Didn’t know . Now I do . Please god . I pray u find the answers . These drs are so clueless took me a long time to find this disease . 😢prayers for u as well
Posted 6/14/2024 11:30 PM (GMT 0)
Bailey ,

Can I be herxing for 5 days already . My joints and muscles ache and it’s hard to breathe . Like heavy chest . And anxiety . And I have a wet taste in mouth that’s been fine and go from my cns . I took an mri a few times and they said was normal . Do u suggest I get another one . ? Or doesn’t it matter . My elbows kill my neck my anxkes and wrists and musvles pinching and blurry vision . I can’t believe that I made excuses for this illness ! Like it’s all withdrawels ! It’s this and that . When clearly this is serious . Can this happen . Head ache so bad . Please god . Please
Posted 6/15/2024 4:42 AM (GMT 0)
Hun, I don't think you should be worrying about people saying you'll die from Lyme. I'd put most of those comments in the same category of people saying you can die from eating a donut and drinking a soda for breakfast, technically true, but most people don't have an existential crisis about dying when they see a box of donuts, or start planning their funeral immediately after eat a package of Oreos.

Wow I can't believe someone charged you $60k for treatment. I guess maybe if iv antibiotics were involved?

Others can chime in since I'm not an expert in this, but I believe herxes can last 5 days. Some antibiotics can also break down biofilm which increase active bacterial load be flushing the bugs out of their hiding places. This can also put you in a state where you feel terrible after you take antibiotics. I can't offer you much info on 5 day herxes since my body tends to react very quickly, so my reactions could be dramatic, but my herxes are usually short.

Have you talked to your doctor about glutathione? It's not a binder, but I think it helps your body's natural detoxing work better.
Posted 6/15/2024 5:28 AM (GMT 0)

Jamistarr said...
Bailey ,

Can I be herxing for 5 days already . My joints and muscles ache and it’s hard to breathe . Like heavy chest . And anxiety . And I have a wet taste in mouth that’s been fine and go from my cns . I took an mri a few times and they said was normal . Do u suggest I get another one . ? Or doesn’t it matter . My elbows kill my neck my anxkes and wrists and musvles pinching and blurry vision . I can’t believe that I made excuses for this illness ! Like it’s all withdrawels ! It’s this and that . When clearly this is serious . Can this happen . Head ache so bad . Please god . Please

I’m so sorry you are suffering!
When I was on Dr J’s “Bartonella/Persisters” protocol I had harsh herxes.
One was so bad my husband was ready to take me to the emergency room.
I had head and body pain, high fever. My head felt like it would explode from the pressure.
Some relief came with soaking in a warm bath with Epsom salts.

It very slowly subsided over several days.
Can you take a bath?
Do you have someone with you?
Posted 6/15/2024 10:28 AM (GMT 0)
yep - herx reactions can definitely last a week or more - but if you stop taking the medication that's driving them they will usually start to subside after a few more days

as baily mentions - these reactions are variable from one individual to another - and unfortunately - if you are reacting strongly - and continue to take the antimicrobials - then the reactions can continue.
although ultimately they do still tend to reduce over time, this can take many weeks

for this reason treatment is more like a marathon - where you pace yourself based on how much discomfort you can manage - rather than an all out sprint - where you throw everything at it for a few weeks and just try to ride it out

total treatment time for longstanding bartonella infections are typically many months in total duration - however you are not expected to be experiencing intense herx reactions for all of this time - more like occasionally as treatment ramps up

have you contacted your doctor about what to do if your symptoms from herx become unmanageable - they should be familiar with how to approach it

i hope its of some help
Posted 6/15/2024 12:49 PM (GMT 0)
Dear god , can a herx last longer than 5 days. ? I’m burning alive . And so much pain . I’m so scared .
Posted 6/15/2024 5:46 PM (GMT 0)
again - its not a sprint Jamistarr

very often treatment is more like gradually peeling away layers over time - than throwing multiple antibiotics at it from the off and trying to cope with weeks of viscously flaring symptoms.

especially in people who react strongly to treatments - if often just not possible for them to tolerate all of the treatment they would like to do for the fastest possible recovery - and instead have to gradually introduce treatment at a rate their bodies can tolerate

there is no need to be scared - you have some control - if you feel the herx type reaction is unbearable or doing damage - you can take a break and restart again when then have settled down a bit

i hope its of some help
Posted 6/17/2024 7:26 PM (GMT 0)

Jamistarr said...
Oh gosh . So u are not battling Lyme or tick born illness ? Sorry I’m confused . And also the statement that people do die is really scarying me . I have had some treatmnets but not steady . Like this . I had Lyme 19 years ago . But now Lyme test is neg . And babesia . But positive for Bart . I was bitten by a feral cat and then I got very sick . But didn’t think anything of it ? Thought I had flu or withdrawels . Didn’t know . Now I do . Please god . I pray u find the answers . These drs are so clueless took me a long time to find this disease . 😢prayers for u as well

Thanks Jamistarr smile

No, however I have gone undiagnosed for a long time and I am in the process of ruling out one of two syndromes. Then, sadly I think I'll be having surgery which is something I had wanted to avoid. However my life right now is pretty hard and difficult. I definitely can't function like a normal person, can't concentrate much, can't do chores as much as I'd like, leaving the house is a pretty horrible experience due to the sensory overstimulation.

Yeah cats can transmit Bartonella. Sorry about that. There's a story on youtube called "Jack and Amy's Story : Bartonella." It's about a young man now who was scratched by a cat when he was a kid and he spent many, many years treating it. Here https://www.youtube.com/watch?v=zi3v_d5ndpw&pp=ygufamfjaybhbmqgyw15j3mgc3rvcnkgymfydg9uzwxsyq%3D%3D

I hope this helps a little bit.

Sorry about my remark about people dying from lyme. I didn't mean to scare you. It is "possible" but I say that in the loosest sense. Most people don't die from lyme but there are few stories of people passing away. They were often old and infirm too.

Anyway I don't think you should focus on that nor worry, you are taking the right steps to combat things! Please don't be scared - easier said than done. I believe you can get through this.

Sorry I took a while to get back, I felt awful this weekend.
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