What do people do that react to everything?

I have been at this 15 years.

This is my 4th or 5th relapse.

Every one is harder.

I have bartonella. Brutal bartonella.

I am a difficult case because I "herx" or react to nearly everything.

For those in a similar situation, what do you do that's helpful?

DerekF - That is a very good question. There are a good number of people who are in similar situation with reactions. I believe Garzie is sensitive to a lot of treatments, for instance.

I can relate to your predicament and now have no idea what to do. For instance, I started back on ALA a few days ago and have experienced really bad migraines. Today no ALA and no migraine, so far. I’ll be interred in the others who answer.

BlazerGermany said...
I am no expert but maybe ask your doctor to start with Low dosages?

Also disulfiram May be usefull against Bartonella and you can Low Dose that for longer periods of time without the fear of building bacterial resistance.

This is a very bad idea. Do not do this.

If you're going to treat bartonella. you need to kill it. If you take low doses which do not kill it, it will tend to disturb the dormant bartonella, which will then become active and attack the red blood cells and multiply.

The disulfiram groups on facebook have many stories from people who took low dose disulfiram and complained that it made their bartonella infection worse.

DerekF said...
I have been at this 15 years.

This is my 4th or 5th relapse.

Every one is harder.

I have bartonella. Brutal bartonella.

I am a difficult case because I "herx" or react to nearly everything.

For those in a similar situation, what do you do that's helpful?

You stated you relapse.
When you start to feel better - do you stop the abx? Or do you wean off?
And are you pretty much symptom free when you stop abx ?

HolyCow33 said...
Hello. I just wanted to ask you, what if you are misdiagnosed?
If it was bacteria or a virus, it would have healed long ago.

Welcome to the forum.

That’s not true what you stated.
It took me several years to be healed - I had both Bart and Lyme.

Re: missed diagnosed:
In my case (and many many other people I know personally AND on this forum) ruled out other diseases. my Dr tested me for just about everything including the autoimmune diseases. I also had appts with a Rheumatologist - one in my small city and one in a larger city.
Also had an MRI of my brain and a CT scan. Can’t even remember what the cat scan was for.
I also travelled to a specialist - a physiatrist (not to be confused with a psychiatrist ) who did an EMG and NCS

Then I tested for Lyme via Igenex and was positive.

It was a no brainer for me
Treated and I got better

HolyCow33 said...
But it's perfectly normal to call me a liar, right?

Forgive me for being literal, but no one called you a liar. I understand that you interpreted the comment "That’s not true what you stated" as being called a liar, but those are not the same thing. You might ask "Well, what's the difference?" To which I would respond "Intent." No one here is intentionally trying to minimize, marginalize, or discount what you've proposed. We're all here mostly sharing personal experiences and opinions. Aside from having a few pharmacists as members, I'm not aware of any doctors or nurses being members.

HolyCow33 said...
Clearly, clearly there is something STILL not right with the person's cognitive function, however you interpret it. If they cannot use words combinations correctly in their own language, that is very telling.
Maybe, just maybe the super literate doctor took advantage.

If your comment is regarding the use of "missed diagnosed" versus "misdiagnosed," is that really worth such a strong response? Though I don't have a smartphone, many people here do use a smartphone to access the forum and some use the speech-to-text function to make comments. It's not unreasonable that someone speaking "misdiagnosed" would be interpreted as "missed diagnosed." Obviously, you're smart and understood the intent.

While I don't have a smartphone, I have an iPad that's over 10 years old and I use that speech-to-text feature when sending texts to a friend's iPhone. Despite my trying to speak clearly, it gets about 15% of the words wrong. The only way it works better is if it's completely quiet here and I'm six inches from it and speaking slowly and robotically. But, I'm usually too impatient for that, so I don't worry about it. Using context, my friend understands the intent.

This will be my last comment here, as I don't want to further sidetrack DerekF's thread. Again, I'll just ask for patience, tolerance, and courtesy. Please. Pretty please...with a cherry on top. Otherwise, any meaningful contributions you have to share will be lost in the manner they're delivered. I'm sure you have lots of good information to share.

Thanks for your reply.

wow - there is an awful lot there already that is way way off topic and adds little to the original posters discussion - so i will just address the main point that was raised - that of bacterial persistence

mainstream medical thinking is prone to believe that all bacteria infections either resolve themselves or will resolve with a few weeks of antibiotics.

this is however demonstrably untrue for many well know bacteria infections and situations - here are a sample:

-tuberculosis for instance often requires combination antibiotics for 1-2 years - and antimicrobial resistance is increasingly common
-leprosy - a bacteria infection still common in the developing world - often takes 18 months of combination antibiotics to clear
-rheumatic fever - cause by step infection of the heart tissue - often has to be managed by lifelong antibiotics
-Prosthetic joint infection - often managed by the use of life long antibiotic therapy*
-Vascular graft infection - often managed by the use of life long antibiotic therapy*
-Implantable cardiac device infection - often managed by the use of life long antibiotic therapy*
ref - https://academic.oup.com/jac/article/73/10/2601/5032790

specifically regarding lyme disease - here is a summary of many many peer reviewed studies showing bacterial persistence after the few weeks of antibiotics - recommend by typical standards of care.
VIEW IMAGE

whilst it is of course important to rule out any other potential causes for symptoms - most of the people here have been mislead by medical practitioners at one point or another
-that they do not have a bacterial infection
-that if they did - it would have responded to a short course of antibiotics
and generally had to battle to get appropriate antimicrobial treatment at all

for this reason they are likely to push back against anyone suggesting that a bacterial infection would have cleared up long ago.

OK, this seems more of a discussion

if i understand you correctly you have lost someone very dear to you to lyme disease (or some other illness that they thought was Lyme disease) and you feel that that person was misled by me and other people on this forum into pursuing Lyme treatment - a treatment that was very expensive and the person dear to you ultimately passed away.

i am very sorry for your loss.

i see you hold a great deal of animosity towards people in this community - as, to you, they seem to have lead the person you loved astray.

i hope that you can see that, actually, everyone here is in the same boat as the person that was dear to you.

we have all lost a great deal to this illness - our health, our jobs, our houses, our loved ones, our relationships our life savings etc.
- we have all been rejected by the medical establishment and forced to find our way through this extremely challenging puzzle
- and many of us are not entirely certain we have Lyme disease - but the people who have found their way here tend to believe this is the most likely explanation for their symptoms - and therefore the best chance of recovery

some of us have definitely recovered after long term antibiotic therapy - others are part way recovered like myself - and others still struggle to find things that help them.

unfortunately with any serious complex illness - successful treatment or cure is not guaranteed - even if it is the right treatment (or the best we have to date) - and given with the best possible intentions
take many chronic illnesses today:
cancer, congestive heart failure, chronic obstructive pulmonary disease,
many people die each year from these diseases despite the best currently available care.

regarding your animosity towards the people here - like myself who are still suffering this illness:

i would just like to point out that i personally was not here on the forum 10 years ago (i was living a normal life at that point) in fact very very few members - if any - from 10 years ago are still here

i also tried to search for posts by "jaidanjr" - but there do not seem to be any posts at all - are you sure you have the right forum ?

regarding "your medical experts" - i personally have no affiliation to ANY medical experts - in fact everyone here - myself included - tries to maintain a healthy scepticism about what is known and not known about these illnesses - as these are mostly emerging zoonotic diseases and there is clear schism in the medical community with conflicting information continually being published. Having been failed by the mainstream medical community - we are forced to try and navigate these muddy waters in order to try and get our lives back. we would all rather it was simpler. but alas it is not - so we can either try do this based on hearsay, anecdote, opinion pieces - or we can try to make use of what science is published - whilst at the same time being aware that much of it is, wrong, incomplete or otherwise less than perfect.

i wanted to respond to your post - but this thread is perhaps not the best place for an ongoing discussion on the topic - but, if you would like to start another thread to discuss why you feel people here are on the wrong track - if you treat people with respect i think you will find that many of the people here are open minded and may well wish to contribute.

again - i am sorry to hear of your loss and your pain - but we are actually all on the same side - just people suffering as your loved one did - and trying to find our way out.

Kind words indeed - thank you Sara