Can't Treat Without Problems But Need to Treat

Hi running wild,

For the Bartonella you can take an antifungal, as a lot of LLMD's are doing that now.

The reason I mention that is because antifungals are sometimes also prescribed for people with Sjrogren's who get candida.

I'm on Fluconazole myself for Bartonella.

Example of a doctor using it for Sjogren's:

" We typically initiate treatment with oral fluconazole, 100 mg daily for the first 10–14 days of each month, but longer treatment periods may be necessary at first. "

https://clinicalconnection.hopkinsmedicine.org/news/sj-gren-s-disease-making-the-correct-diagnosis

Keep in mind that you would still need to pair it with some other meds or herbs to get a full protocol. But it might be one antibiotic less.

hi RW - this is clearly a tricky situation

you may have to step outside the conventional medicine paradigm to find an effective way forward - as they currently have only a very poor understanding of such conditions and tend to be resistant to exploring what they don't understand.

the few thoughts i have that might be worth exploring are

1, the least radical or risky 1st - i wonder if you can somehow "sneak up on it" - by v gradually building up dose of bicillin - from below that that cases a flare to see if your body is able to tolerate it without a flare that way. this often works with sensitive people for herx reactions - so since i suspect herx is also flaring the auto-immune condition this might work with the AI also - thsiis something you could try with your existing doctor / maybe even on your own

2, medicinal cannabis has been used by quite a number of people who have otherwise incurable autoimmune conditions - like Crohn's disease - and quite an assortment of others - when it works is can be miraculous - but tends to need some experimentation to find the best type, dose, strain etc for each individual - and is not typically available through the conventional medical fraternity. it works on the endocannabinoid system - which is a fundamental control system for immune function and many other systems in the body - and one that is often found to be depleted in chronic diseases - esp. those involving pain and immune system dysfunction.
with legalisation for medical use in many US state now there are more and more legitimate practitioners - and this is likely to need the help of one of the very knowledgeable medical marijuana specialists who have worked with similar AI issues before. one of the advantages is its relatively accessible and generally very safe.

3, i wonder if there are any real immune system specialist in the conventional medical community that know how to selectively suppress the parts of the immune system that are driving the AI issue - without blanket suppression of the part of the immune system you need to fight infection - this might be via very targeted pharmacological approaches - but i suspect, if these people exist, there are likely only 1 or 2 in the country and may be hard to find and access - but a search of pubmed might bring up published reports that may help identify them.
this would be bleeding edge pharmaceutical medicine and the most risky of the three options - but that risk has to be weighed against the risks of progression of the condition if untreated or treated with less risky options.

i hope its of some help

i understand the frustration RW

ref the lower dosing of bicillin - i would consider it more a very gradual ramping up - rather than just a low dose approach

reason being - that just as will the herx from herbs or any other antimicrobial - a person can start off with a dose well below what causes them any issues - and then very gradually increase that over time - but at a rate that does not induce intolerable herx type effects - or in your case - AI flares
i have had to do this many times with various herbs, methylene blue, bromelain and antibiotics.

in this way the drug may still do its jib but without ever triggering sufficient herx to trigger an auto-immune flare.
its likely to take longer - but its the easiest available option

ref the cannabis - cannabis plants and medicines are highly varied - some strains are very psychoactive and even hallucinogenic - eg typical street bought marijuana or "skunk" which has a high THC content) - others not at all - eg low THC and high CBD content -bad experiences are pretty common on high THC types - if you have had bad experiences - i would defo work with a well respected practitioner. these people will be used to working with Kids with epilepsy or seizure conditions - who need to do school work so they cant be completely out of it all the time.

ref rheumatologists - i have seen several - and formed the opinion that they are of very little practical use for anything in the lyme or lyme driven auto-immunity sphere

my biggest problem with them is that, as a discipline, they do not even attempt to get to the root of or cure any of the ailments they treat - they only treat symptoms. they dont have the frameworks to understand what is going on - so they have redefined their role as symptom control - rather than true curative treatment. its defeatist.

ref the testing - i think its time to move past that
i think you are probably the most tested member here - you have enough positive tests over the years to know you have lyme, bart and Babesia - and these are the main three that define treatment.
i don't think you can learn anything useful from further testing - but continued testing still has costs and still causes you an emotional roller coaster for no net gain

so that question can be called complete now - and the focus moved to what to do about it - which is a big enough challenge on its own and will require full focus.

at least this is my interpretation - based on everything we have discussed - i hope its of some help

all the best !

Garxoe - As far as testing, I agree. When my PCP,who is very good and decently Lyme literate, said she wanted to do another test, I was not for it. But I do respect her a lot, as she is one of the few "old school" doctors who still are thorough and want to help people, not just treat symptoms. She is 40 miles from my house, but it is worth it to see her. She is open minded and actually listens and uses some of the ideas I have researched. But that is enough testing.

Your assessment on rheumotologists is spot on with me. It's not that they don't care. But it goes back to what we have all dealt with in the Lyme world. Doctors are taught "this is how it is" and use CDC guidelines. Most won't vary from that and want nothing to do with a patient once Lyme is mentioned. Sjogrens is the Lyme of the rheumy world. So misunderstood and rigid rules for diagnosis. I'm still sero-negative, Had I not, literally, insisted on a lip biopsy, there still wouldn't be a diagnosis.

Cannibis - You hit the nail on the head about the amount of THC in it. When I took it, a friend of mine who uses it for pain was amazed by my reaction until the next day when he took some from the same shipment. He said it was very strong and had a lot of THC - more than usual. He suggested I take less. I told him the first half-dose didn't make me think of the album "Sgt. Pepper's Lonely Hearts Club Band," but made me feel weird enough to feel like I was inside the recrod . That was the best way to describe it.

Hard to find anyone who is adept at utilizing it for medcial use.

Rainy's suggestion about flucazonle sounds reasonable and a good possibility. I do believe I am dealing with candida also, but I'll have to ask about kidneys. Not sure how to go after Bart and Babesia with other herbs and medicines. There is no doubt, to me, Sjogrens is causing so much of this. But there is also the fact, as we all know, infections push it. Quagmire. Maybe my PCP will have some answers as she researches.

Thanks for your thoughts and answers.

running wild said...

....made me feel weird enough to feel like I was inside the recrod . That was the best way to describe it.

yep, that sounds pretty much like how strong THC cannabis is supposed to feel - definitely not everyone's cup of tea

You can do it running wild !

just a final thought RW

i have seen this kind of thing with most of the doctors i have seen here also:

essentially they are risk averse in their outlook - (you don't train for 7 years to qualify for a job for life then risk throwing it all away by flouting the rules) - so most stick very close to rigid rules, for self protection.

however, something seems to go wrong in their reasoning around risk - i think because they are incentivised to look at it from their perspective - rather than purely from the patients perspective - and if one is dealing with a life threatening or at least life limiting disease - our perception of risk may be very different to theirs.

for example - they may be reluctant to try therapies which are not approved - or "off label" - due to the risks they perceive with them - even when existing therapies are not helping - as, for them, these incur professional risk as well as patient risk - and so they often opt for just carrying on with failed treatments.
whereas, for the patient, there is no zero risk option - and so the proper risk / return calculation is to compare the risk of doing nothing (or continuing with ineffective treatments) - and risk getting further deterioration or new serious heath issues - vs the risks of a new treatment - but that has at least a chance of reward.

all that to say you may need to step outside what your current doctors are comfortable with - as your true interests are diverging.

If you want a totally different route you could try pemf. I'm not exactly sure how it would help with your specific symptoms but it generally decreases pain and inflammation and gives your body more energy. However, it can also up light sensitivity. Initially it can lower bp but when I did it consistently that effect wore off after a while.

Garzie- Didn't mean to seem defensive of her.Pointing out she is better than most any PCP would be, but in this case, it's a situation beyond what she can deal with. You are right - unconventional. Have to find right person or come up with right plan to figure out what to do.

Thinking about starting with houyttunia or sida acuta to see reaction. Maybe Japense Knotweed. Low, low, low dose.

Hi Running Wild,

I'm in a similar situation as you are. I've tested positive for borrelia, bartonella and babesia, and for the mayority of the medication that hits borrelia and bartonella, I get neuropathy. It all started with the azoles: first, the fluconazole, I took it for a month and then had to stop, later on with other azoles like albendazole, fenbendazole or triclabendazole. I've tried pyrazynamide and other abx for tuberculosis and all of them give me neuropathy, same with dapsone. The last one was yesterday, with clarityne. The only ones so far that don't give me neuropathy are tetracyclines, macrolides and nitroxoline. For babesia I have no issues so far and I've tried everything.

After saying this I'm not sure how I will proceed, because this seems to be an immune system issue. The medication hits certain bugs and neuropathy appears. What Garzie has said could be a good option to try.

Running wild, I think my reaction is caused by the infections, same as yours, they drive the immune system crazy. At rhe beginning I thought it was due to the medication, but after having tried so many different things with completely different molecular structures, it makes no sense at all.

Regarding testing for autoimmunity, I haven't done it and I won't go that route if I can avoid it. Lots of tests that don't know where they'll lead you. I think it's better to work with what you have, go slowly with the few things that you can take, and keep searching for alternatives in case something else works better. Try as many meds as possible, in case some work better than others or give you less immune reaction.

GeraltofRivia said...
Hi Running Wild,

I'm in a similar situation as you are. I've tested positive for borrelia, bartonella and babesia, and for the mayority of the medication that hits borrelia and bartonella, I get neuropathy. It all started with the azoles: first, the fluconazole, I took it for a month and then had to stop, later on with other azoles like albendazole, fenbendazole or triclabendazole. I've tried pyrazynamide and other abx for tuberculosis and all of them give me neuropathy, same with dapsone. The last one was yesterday, with clarityne. The only ones so far that don't give me neuropathy are tetracyclines, macrolides and nitroxoline. For babesia I have no issues so far and I've tried everything.

After saying this I'm not sure how I will proceed, because this seems to be an immune system issue. The medication hits certain bugs and neuropathy appears. What Garzie has said could be a good option to try.

Welcome to our forum.
You can start a new thread ( if you want to) and introduce yourself.

Did you try Rifabutin? It’s a good abx for Bartonella.