Symptoms Question for hyper-sensitive people

Did you check the carbon dioxide levels in your home? It hadn’t been a game changer for me but it definitely made me feel a bit better

You can try pemf but it seems to be very hit or miss. When you say almost died do you mean from allergic reactions, or becoming weaker?

This forum is for posting, Canary, so no worries!! You need to ask questions, don't feel bad about that!

My brain is on vacation somewhere without me today, so forgive me for whatever - spelling, not being coherent....LOL.

For some, like me, I had to go back to the very basics of body functions and start there - was my digestion okay? Do I need probiotic support? (for most of us, that's a yes). Do I need to cleanse my liver/kidneys so they can function a bit better as well? What may need to be supported in order to function a bit better?

I had to do all of those things and more in order to get my body to a place where it was ready to take on the task of healing these infections and dealing with toxins.

I had tried treatments twice - and failed miserably - that is, I was in misery because of it - before my body was "prepared" to deal with treating these infections. I think there are more of us that need this very basic support to heal that we realize.

It can seem odd to have to go back to such basics, but it was the only way I could move forward.

Thoughts to ponder....

1yrinVA said...
Hi Canary - the symptoms you describe when your husband was on azithromycin sound like they could have been an allergic or toxic reaction to the drug, rather than a reaction to treating bartonella (I think may have been the reason for taking azithro based on your other thread?)

Azithromycin has a crazy-long half life (days) and accumulates in the body at a fairly high level. It is also known to cause disturbances to the heart rhythm, in rare cases. If your husband had low pulse, poor circulation, turning blue, etc. maybe he could have been one of the rare people having a cardiac reaction to the drug. Hopefully he is better/stronger now off of it? On the plus side, if it was in fact a toxic reaction to azithromycin, perhaps his reactions to other treatments won't be as bad.

For what it's worth, I am also very sensitive to everything. When I first tried antibiotics, the reactions were too strong. I ended up taking herbs for the better part of 2 years (primarily knotweed and houttuynia for bartonella), at low doses. That took enough of the edge off to where I can now start treating with antibiotics consitently at normal-ish doses. I never thought it would take years to get to the point of being able to treat more aggressively, but unfortunately that's how it worked out for me.

Hmmm, I didn’t know the cardiac part of azithromycin. That’s really helpful to know! Thank you so much! I think pretty much all pharmaceuticals are toxic to him. He’s had really bad reactions to amoxicillin, prednisone, etc.

Thank you for your advice. We were encouraged by it and are starting super low with just knotweed. It’s helpful to know other people also can’t just jump in with 4-5 herbs at once.

I’m also very interested by your approach that you’ve been able to take! That’s great you can treat it more aggressively now that you’ve found a less toxic foundation from which to start.

for info - i have heart palpitations and arrhythmias - and did some deep diving into the research on long QT and risk of death from it - via TDP ( a potentially lethal total arrhythmia )

because TDP is potentially suddenly fatal (not long QT- it happens to a lot of people without issue)
medics look for an early warning sign or marker to test for - and long QT was selected as a possible.

however, in the studies i read long QT was not found to be a reliable marker for who will develop TDP or die - though risks are raised if you do have it - absence is not indicative of risk - so its a poor test
- its just the only one they have.

the main risk factors are genetic - and form a predisposition that is not yet identified by genetic tests
so its not possible to accurately measure at this point

other risk factors are then overlaid on top of that
-advanced age
-pre-existing co-morbidities - especially arrhythmias / heart conditions
-co-commitment administration of other long QT promoting drugs
-sex - i think females are more prone statistically - would need to check
-intravenous administration of the drug ( due to much higher blood concentrations)
-increased drug dose - or overdose

in my reading more than 90% of deaths from TPD/sudden heart failure involving macrolides involved intravenous use rather than oral - and also involved one or several of the other risk factors - often several - like v high IV doses - advanced age and a pre-existing heart condition.

so it seems the general perception of risk from oral use of azithromycin is overstated - unless you have additional risk factors - but some of which its not possible to know in advance.
but in general use these risks are statistically relatively small - hence its one of the most common antibiotics prescribed ( around 15% of all abx prescriptions are for macrolide antibiotics )

also bear in mind that the drug companies are protected from any legal action against them if they put this warning on the packet - so this is mainly what its doing there

in the end anyone could have an adverse event - so its all about assessing the probabilities and making an informed choice.

Canary63 said...
Garzie, this information is incredible. Thank you so much for sourcing this. This not only helps us make an informed decision, but I can bring this info to others.

Girlie, I didn’t know you could test for this, so thank you so much!

I just realized I didn’t say what the test was.
It’s an ect

Interestingly my doctor sent me to lifelabs for it.

Yeah the sensitivity thing is really difficult to deal with. I'm taking other drugs that can cause long-qt so as Garzie mentioned, it's not good to add more of those to it. I also have side effects from Rifampin and Methelyn Blue. So that leaves very little to treat Bartonella with besides Bactrim in terms of rx's. I do take Bactrim.

I was never at that level, but I have also been very sensitive and still am but not as much.
I treated with very low dosages and multiple days apart as Bailey just wrote.

Then I focused my energy on other things that could improve my health but not cause herxing. There are so many things to work on and I will never even get close to doing everything “perfectly” around that. A few years with that thinking and I'm now very highly functional. Things around MCAS, the limbic system, and the vagus nerve could be good to look at.