Your thoughts/opinions - my progress/residuals

My thoughts are you're putting yourself at risk with pre-exhisting conditions Girlie during the coronvirus pandemic... If you have no other means of finding resourceful income to support yourself, well then I understand you going back to work... But if you don't have to, why do it?

My personal thoughts are you still have an ongoing bartonella infection considering spinal pain and anxiety you have mentioned in another post... I wouldn't buy into the residual crap... That's just my opinion, been there, done that... I had a so called lyme literate doctor in Michigan act like since I've used all the antibiotics he uses in his arsenal, that now I just have to learn to deal with being sick and deal with a maintenance dosage. This is not what Dr. B preaches, sad that some other Lyme Doctors think this way, especially with new persister cell drugs surfacing...

Consider what this article that recently popped up

"Cat Scratch Disease: Vet Suffers Extreme Fatigue for a Decade after Catching Rare, Severe Case of Bartonella Infection"
https://www.newsweek.com/cat-scratch-disease-vet-suffers-extreme-fatigue-decade-after-catching-rare-severe-case-1444715

Rare? lol. Morons, Bartonella is everyone
https://www.northcarolinahealthnews.org/2013/12/05/bartonella-is-everywhere-so-why-dont-we-know-more-about-it/

Regardless of that rare crap, the big keyword in this article is of course "decade," yes decade, 10 years... And yet all this Vet Doctor has is bartonella. I've about reached the 11th or 12th year mark, lost count all these years but I'm finally starting to see the light at the end of the tunnel with this darn disease, understand it more thoroughly, connect the dots. All these years my liver enzymes have been up? Many lyme patients and doctors tend to think this is just from longterm antibiotics, my personal opinion, nope... Sure they can be raised from antibiotics, but I think both babesia and bartonella persister cells hide out in the liver just like Malaria does, they call these persister cells hypnozoites.

After taking primaquine and ending up in the hospital with pyshcosis for 3 days... Just like Kenneth Liegner's medical patient did with disulfiram, afterwards it changed me. -> https://youtu.be/8copz0yqghu?t=642 It felt as if something disappeared from my body and my overall health was finally starting to respond and that permanent fatigue was starting to go way... Did it remove Babesia from the picture? Possibly, but during which I woke up out of my sleep one night with a raging heart attack like seizure, now I realize that this was bartonella waking up from it's dormant state. As I noticed treating bartonella, I was having these mini heart racing issues when I wake up in the morning when I'm herxing...

Now after taking primaquine, it seems as thought the symptoms are starting to melt away and bartonella is a lot more vulnerable... I've been rotating between low dose Disulfiram and doxyxycline/pyrazinamide, to sort of wake up the bartonella dormant cells, then following up with a drug like pyrazinamide which has known to kill tuberculosis persister cells. It seems to be working, best state I've ever been in my life...

I can finally eat gluten for many days in a row and not having all these allergic food reactions... Lot of the intrusive thoughts, POTS and other neuro symptoms are almost all gone. But still flare up when I herx!

https://youtu.be/9iyaihage7g?t=128
If you watched Kristina Bauer's podcast with Dr. Robert Bransfield, he talks about the intrusive symptoms of bartonella and how well disufliram has been working for chronic lyme patients... Even pairing disulfiram with another antibiotics... If you can't tolerate disulfiram, cut it up in 1/8th of a pill and take it with low dosage doxy or rifampin. I suspect that disulfiram is working so well with neurobartonellosis probably due to the long half life, bioavailability, and being able to penetrate the blood brain barrier.

I have to completely concur with what Dr. Tania Dempsey said, that bartonella and babesia aren't the coinfections, but the main significant illness...
https://www.drtaniadempsey.com/post/why-bartonella-is-the-new-lyme-disease

"Those are the common ones that Lyme disease doctors are treating, but they aren’t really co-infections, in my opinion. Each of them cause significant illness all on their own. I have patients that do not have Lyme disease, for example, but they still test positive for those other infections."

I think Babesia and Bartonella is what's keep people sick... And unless you're using a persister cell drug that targets the persister cells of these different infections plaguing us, that's probably hide out in different parts of the body, one being the liver, other being lymph nodes and the thyroid... Well just like Malaria with hypnozites, well, remission will never happen. That's my personal opinion, maybe I'm wrong, but that's what I've found out with my own body and I've tryied everything imaginable...

I'm not saying you have to reach the state of psychosis to beat this thing, but I think in order to reach remission you'll have to use something like Disulfiram, Pyrazinamide, or one of the quinines like Primaquine to target these persister cells. Luckily Disulfiram is safer than Primaquine which could possibly damage the brain stem, so if you have babesia, hopefully Disulfiram will knock out the babesia persister cells... Quines in general cause all sorts of psychotic symptoms so we need to find other drugs out there.
https://www.theguardian.com/lifeandstyle/2015/apr/10/experience-anti-malaria-drugs-made-me-psychotic

Bartonella seems like the hard one to conquer, just like Dr. Liegner said here ->https://youtu.be/q6dlpvbuxrq?t=1152

From what I've been reading over the years of your posts and others, doesn't seem like Dr. H treats with any of these drugs... Such as Disulfiram, Pyrazinamide, or any of the quinines...

I sure hope that with the new studies come out, they can finally get some of these drugs that target the persister cell forms of Bartonella.... Like this study here...
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc6628006/

It's just ridiculous that man sit here and suffer, meanwhile some of the drugs listed up above already FDA approved. I even heard Dr. Steven Phillips saying many of the antifungals being able to work against bartonella persisters...

Now there's this talks of this new drug azlocillin, which has show to target all forms of borrelia, but question should be does this kill bartonella persister forms?
https://scopeblog.stanford.edu/2020/03/30/lyme-disease-bacteria-eradicated-by-new-drug-in-early-tests/

I still think that John Hopkins, Northeastern, Stanford still aren't addressing the Elephant in the room, which is Bartonella...... A lot of patients are contracting the three Bs nowadays, how one would ever expect to reach remission without targeting Bartonella is beyond me... Maybe in the early stagets with Disulfiram, but anyone past the year mark and gone chronic, they'll need more than just disufliram that's for sure... I think disulfiram is still a key to targetting and waking up bartonella dormant forms, but you'll need another anitiobtic that specifically targets it.

Post Edited (Charlie55) : 7/25/2020 10:19:02 AM (GMT-6)

Hi Girlie !

Because of those symptoms that comes and go... my non medical expert opinion would be that they are a sign of still existing infection. Especially something as specific as foot pain which screams Bartonella.

Im pretty sure I remember hearing Horrowitz mentionning that his goal was to knock down the bacterial load a great deal to a point that the bacteria can be kept in check... NOT about successfully eradicating all the bacteria.

Is that also what Jemsek propose, hence the maintenance protocol?

I know that another LLMD that I really like (M.R) have a different view on things, and tend to try to eliminate both babesia and bartonella and find an equilibrium with Borrelia. He seems pretty adamant about pulsing being inefective against babesia and bartonella. I wonder to what extend this is true, and could explain your residual bartonella symptoms.

I was listenning to a podcast from dr. J. last month, where he was saying that his patients usually wane off the maintenant protocol after a couple year.
Is that what he had planned for you?

Also have to consider how much the Swiss agent also plays a part, aka Rickettsia, also biofilms... From my experience, after I broken down one gatekeeper with Primaquine, I no longer needed to use Stevia with my antibiotics, as there was no need to considering the herxes became so severe and my progress with sped up so much quickly. I think Stevia with a drug like Daspone is a must... Seems though, with a drug like Disulfiram there's no need to use a biofilm buster like Stevia or other others...

Also a side note, them darn nematodes also may play a role, but considering disulfiram pretty powerful antiparasitic wise,
http://outbreaknewstoday.com/lyme-discovery-borrelia-bacteria-hides-inside-parasitic-worms-causing-chronic-brain-diseases-13216/

I suspect if Science ever catches up, that's if Crony Capitalism and Big Pharma will ever let it, "remember no money to be made in curing, but instead disease management and symptoms maitnenance" - Big Pharma Rep Gwen Olsen. Scientists will probably one day find that Disulfiram will help treat some of these brain wasting diseases like Dementia and Parkinsons...

I haven't seen the Under Our Skin doc in a long time, but didn't Ben Petrick and that IBM mogul have Parkinsons...? One of them said that IV antibiotics were like night and day, but they kind of eventually lost their efficacy... Wonder if Ben Petrick has tried Disulfiram yet? I'm sure for some of these patients, that some of the damage done is permanent, considering Michael J Fox and his residual disease he was left with after contracting lyme. I still think there's a hope for a majority of lyme patients though, percentage number being super high!

I think if you're looking to reach remission one day, it would be a great idea to get on Disulfiram in a low maintenance dosage instead of these other antibiotics that aren't working anymore... It's insane to keep doing the same thing over and over again expecting a different result right? That's what a lot of LLMDs are still doing...

Post Edited (Charlie55) : 7/25/2020 1:25:36 AM (GMT-6)

Girlie the shivers down your spine worry me, have you considered treating a little longer? I don't think its smart to stop now that you have come so very far.

Charlie: “ My thoughts are you're putting yourself at risk with pre-exhisting conditions Girlie during the coronvirus pandemic... If you have no other means of finding resourceful income to support yourself, well then I understand you going back to work... But if you don't have to, why do it?“

At this point we don’t have many cases of covid - in my city - currently less than 5.
The entire island has 140 cases.

After being off work for 6* years - I thought I was ready - but my memory needed relearn my job failed me.

Charlie: “ My personal thoughts are you still have an ongoing bartonella infection considering spinal pain and anxiety you have mentioned in another post... I wouldn't buy into the residual crap... “

My anxiety has been just in the mornings for quite awhile now - and more recently has gotten better - most mornings I don’t get it now.

Re: residual crap: Because I have more recently lost a few symptoms I want to believe that the last ones will go, too. Symptoms have subsided while on the Mtce protocol.

“ I have to completely concur with what Dr. Tania Dempsey said, that bartonella and babesia aren't the coinfections, but the main significant “
That’s what DrJ says too. And that’s why he starts with Babesia treatment then Bart/Persisters.
(All the time treating lyne)

“ From what I've been reading over the years of your posts and others, doesn't seem like Dr. K treats with any of these drugs... Such as Disulfiram, Pyrazinamide, or any of the quinines... “

You referring to Klinghardt?
I don’t know what his protocol is.

Dr J treats with Dapsone and Pyramethamine at the same time as Rifabutin.

Alxander said...
Hi Girlie !

Because of those symptoms that comes and go... my non medical expert opinion would be that they are a sign of still existing infection. Especially something as specific as foot pain which screams Bartonella.

Im pretty sure I remember hearing Horrowitz mentionning that his goal was to knock down the bacterial load a great deal to a point that the bacteria can be kept in check... NOT about successfully eradicating all the bacteria.

Is that also what Jemsek propose, hence the maintenance protocol?

I know that another LLMD that I really like (M.R) have a different view on things, and tend to try to eliminate both babesia and bartonella and find an equilibrium with Borrelia. He seems pretty adamant about pulsing being inefective against babesia and bartonella. I wonder to what extend this is true, and could explain your residual bartonella symptoms.

I was listenning to a podcast from dr. J. last month, where he was saying that his patients usually wane off the maintenant protocol after a couple year.
Is that what he had planned for you?

The thing is - my foot pain has resolved - except every now and then it will appear in the morning.
Thought is that my immune system kicks in and takes care of it.

Dr J says the maintenance protocol will be for 2-3 years.

If I relapse - I’m quite sure he will up the meds.
But even in the maintenance protocol - there has been improvement,

Charlie55 said...
I remember you saying when you went on Rifabutin, you never knew you had such a lingering infection still until you took that drug and it almost put you in the hospital, something on those lines... My personal opinion for a lot of lyme patients, unless you've tried Disufliram, no lyme patient should be going back to work... This drug wakes up and stirs up a lot of activity, after been on and off of it for around a year now... Yeah, I think we all have dormant infections that are that bad... But it's all up to you... Wish ya the best!

I figured I had Bart - but I as surprised that I herxed so bad after such a long run on Rifampin.
Rifabutin hit me way harder than Rifampin.

1yrinVA said...
Hi Girlie, just a couple questions/thoughts I had...

- When you are off antibiotics for the majority of each month, do you notice any trend in symptoms at all? Most of what I read is that Bartonella is relatively fast-growing (at least compared to Lyme), so any trend in symptom resurgence could indicate active infection. (I have usually had some resurgence within days if I stop treatment, although I've only done herbs and never comprehensive abx for Bartonella).

- Conversely, if your symptoms are stable while off abx, have you ever tried taking nothing at all for a few weeks to see what your baseline is? No treatment/supplements + an anti-inflammatory diet (no gluten/dairy/sugar) could be a way to see what your true residuals look like. I mention this in particular because I saw you are taking curcumin and magnesium and I have had issues with both...

For magnesium, I tried supplementing twice (both pre- and post-Lyme) and at first I felt better, but over time as I continued, it gave me severe fatigue and brain fog. The first time (pre-Lyme) I had no idea what I was doing but stopped when I realized it probably made my calcium too low (small calcium supplements over the course of a week or two made me feel better). The second time I tried (post-Lyme), I recognized the reaction and stopped again.

Also, I found that the doses in some of the commercial curcumin supplements can be huge if you're sensitive like me. I took a full tablet of one brand and felt like I was dying and had heart palpitations. I cut the tablets into pieces but still had minor bad reactions so stopped altogether.

So all of that to say, at least in my experience, sometimes the "benign" supplements that seem like they couldn't hurt anything can actually cause some symptoms that can confuse the overall picture.

Generally when I go back on the abx, by the last day (I take the abx M/W/Th/F for one week) I feel somewhat worse - how bad varies from cycle to cycle.
I have not tried going without the supplements - it’s a thought to consider.
Maybe I should try that - starting today!

Charlie said: “ My personal thoughts are you still have an ongoing bartonella infection ”

Alxander said: “ Because of those symptoms that comes and go... my non medical expert opinion would be that they are a sign of still existing infection. Especially something as specific as foot pain which screams Bartonella.”

Rainy Cloud said: “ Girlie the shivers down your spine worry me, have you considered treating a little longer? I don't think its smart to stop now that you have come so very far.”

I personally agree with these sentiments.

If Dr J says the maintenance protocol is intended for 2-3 years, why would you want to stop now and take such a big risk? If this is how he’s gotten other people to remission and they have stayed in remission long term, wouldn’t you trust him and continue?

I dare say you still have active bartonella at least. If you started treating bart hard right now with rifabutin, what do you think would happen?

I wouldn’t stop now, girlie. You’ve come too far and too long. If you’ve had bart since childhood, consider that your treatment will likely be longer than some due to length of infection.

That’s my honest opinion.

I haven’t stopped treatment - I have only extended my off days a few times -

I am wondering though - if my memory will come back or is it damaged for good.

Also my back pain - maybe because it was my first symptom - it will take longer.
First in/last out theory?

I will be starting back on my abx and will post how I’m doing here.
Thinking of dropping the supplements for the next several days...as 1yrinVA mentioned

When I first went on Disulfiram and was eating some ice cream to increase it's absorption, it literally felt like I had stones moving up in my brain. Maybe these are the nematodes Dr. MacDonald was talking about? Or maybe it's just from the die off of spirochetes and bartonella. Either way, that drug got me past a point I never thought I'd get out of...

But I suspect I'll still be rotating on a low dose DSF protocol along with bartonella antibiotics for the next few years to finally get rid of the residual infection still lurking in my body from the dormant cells.

Girlie said...
Generally when I go back on the abx, by the last day (I take the abx M/W/Th/F for one week) I feel somewhat worse - how bad varies from cycle to cycle.

Interesting, does this seem like a herx to you, or do you just feel worse overall?

I don't want to encourage/discourage anyone from stopping treatment if your gut instinct is one way or the other. But another factor to consider is that antibiotics can cause issues too. I've heard anecdotally of some people who report it can take a long time to get better after "bombing" the system with lots of abx to get rid of Lyme and Co.

I found a blog from a woman named Sharon Wachsler (http://sharonwachsler.com/) who recovered from Lyme & Co. If I remember correctly, her doctor stopped treatment after several years of IV abx because her doctor didn't think there was any benefit left to achieve with further treatment, but she wasn't symptom free at the time. She eventually did DNRS and recovered fully over the course of a couple years. I don't know if her situation necessarily relates to yours, but I thought it was an interesting story.