DrJ for Bartonella?

i think bartonella is just very tough to get rid of

i think overall success depends just as much (or maybe more so) on the state of the immune system - rather than the abx used -

getting the body to a point where it can take care of the infections itself is the challenge

all of these infections suppress the immune system and that's what keeps us all sick - the more of them we have the harder it is to get the patient into remission - and some infections are more immune suppressive than others - lyme and babesia for instance are two of the big immunosuppressive ones

given how many abx and for how long you have tried - i suspect this is what you are dealing with

Dr J is one of the best - has got a lot of people well who have struggled elsewhere - if i could choose one LLMD it would be him

Dr M specialises in bartonella as his thing - but i'm not sure we know if he is necessarily any better at it than others - he focusses on it - which is good and you would imagine this gives him some insignts - but i also see patients on the breaking down bartonella group on Facebook who are still struggling with him after 2 + years of continuous abx.

they have different approaches - Dr M like continuous abx - Dr J favour pulsing - both have got people well - but we don't really know enough yet to know who is more right

Dr J seems to think Babesia, often previously undiagnosed, is the blocking factor preventing many / most of his patients from recovering or causing them to relapse if its not treated properly

again this is thought to be due to the immune suppressive activity of Babesia - so Dr J treats all patents for it - test or no test - and even repeats the treatment for babesia at the end again for some who have trouble getting into or staying in remission.

so that could be one possibility to think about

biofilm agents could be another differentiator - most bacteria are 1000 to 1500x less susceptible to antibiotics when they are in their biofilm forms - so it make sense that even years of abx may not kill them if they are in stable biofilms.
Dr M likes lumbrokinase - but that is mainly targeted at fibrin build up - rather than biofilms
Dr J uses Xylitol and Lactoferrin for biofilms based on work on burns patients

hope its of some help

( BTW we try not to use LLMD's names on here to try to help protect them from flack from the powers that be - just use their initials - people here will know who you mean. so, best to edit your message to remove names )

1, you will always find people who will disagree with any approach and make you fearful if you look for them

2, facebook has some decent people on there - but in general its a short form format that does not lend itself to nuanced long form discussion of complex topics like Lyme disease - and one that tends to attract and amplify more reactionary people.

3, the bartonella groups on facebook i have visited mainly follow Dr M so this is exactly the expected response you will be likely to find there. its up to the reader to put other peoples remarks in context that frames them appropriately.

4, different doctors have different approaches - yet still get people well - you have tried the continuous antibiotics approach for a long time - so more of that is unlikely to be helpful - therefore a change is warranted

if it were me i would not focus so much on the antimicrobial therapy itself - but on what might be the blocking factor or factors - reasoning being - if you have done what gets most people well - and are still not well - its likely there is a blocking factor

its very hard to advise people based on a single paragraph in a forum post - but given what you have tried already - and the lack of herx / response to biofilm agents - my best guess is to look for something to do with the immune system or immune suppression - this could be a range of things
eg poor sleep, chronic unmanaged stress, some immune disturbance like gut issues using up all the immune resources, some kind of frank measurable immune suppression ( ie low immunoglobulins or complement), etc etc
just examples - there are many things that impact the immune system

edit to say - apologies of this came over a little strong - i was pressed for time and had focussed on just getting the points down.

several antibiotics have anti-inflammatory effect - so that could explain the rapid onset of increased symptoms after a few days off them as they work out of your system

or it could be some as yet unexplained immune systems effect

v v low CD57 are an indicator of immune suppression - i do think you might find benefit from exploring immune system based options - as i think everything you have mentioned points to this beings a blocking point for you

it makes sense that symptoms flare when taking antibiotics - that's normal for most of us

i think you are in good hands with Dr J

they have got some very sick people well again

all the best

I talked to them about the rifabutin reaction but they told me to just keep detoxing, I don’t see Drj himself but another practitioner in the practice. I’ll hopefully get more feedback at my next appointment at the end of the month!
The neutropenia they never got back to me on but what worked for me the best in the past was shark liver oil. My WBC were in the critical range and that helped raised them to low normal while I was on continuous antibiotics. I also take Reishi extract powder, transfer factors multi immune and colostrum, but the biggest improvements came from the shark liver oil. I get mine from Vitacost.

Thank you for the video links! I’m definitely going to watch those.

I actually didn’t get the same reaction taking it this past week, so I’m definitely very confused. I’m not sure if it was just a bad initial reaction from my body, herx, or the bacteria are not being affected by it as much? I don’t know. Thanks for asking. I have my appointment next week so I’ll bring up all of that with them and see what they say.

Of course !

They said it was a shock to my nervous system and immune system and could also possibly be histamine. They didn’t give me much of a further explanation than that! I did a blood test from a different clinic and found my histamine levels are 15x higher than the normal limit, the highest it’s ever been since being sick. So to me that definitely makes the most sense. All my inflammation markers are back to being elevated (tgfb-1, mmp-9, etc) after switching from continuous abx to pulse dosing. My symptoms have been worsening day by day. I also did testing through another clinic and found tularemia. Which now they recommend I need to treat with different abx …but if I didn’t do that test on my own we wouldn’t have ever known. For some reason they don’t do any testing for lyme and co which is confusing to me.

So yes they were high when initially sick but once I started oral antibiotics they lowered and went back into normal ranges. Then I started the pulse dosing with Dr J and I’m in so much pain and all the markers are high again. However, my vegf is very low.

Yes I was also thinking about mold too but previous lyme doctors told me that it was not a problem and “everyone has mold” so I was constantly criticized by family and doctors when I said mold is likely playing a part here… and possibly why I’m still sick after so many intense antibiotics. Unfortunately even if there was mold my family has run out of funds after spending hundreds of thousands on treatment for me. So remediation is out of the question for now. I don’t know what I would do.

I’ve been living in three different places: Germany, my main home in the states and I also have family in another state I live with for periods of time. So exposure to mold is very possible. I don’t work as I’m still in school.

How did you solve your mold issues? Did the Bart go away once you addressed that?

I kinda figured that… it’s pretty wrecked I think from past antibiotic use as well that was way too aggressive. I almost died from horrible treatment advice. Just wanted to kill the bacteria without realizing the importance of the immune system.

Garzie said...
-varied diet - in particular the number of different plant species consumed is linked to microbiome diversity (although a person might need to overcome infection induced gut issues before many foods are tolerated)

What are those plants?

Garzie said...

Spector proposes everyone should aim to eat 30 different plants each week to promote microbial diversity in the gut and thereby improve overall health.
which sounds like a lot - but lots of things you don't initially recognise as plants count
eg nuts, dark chocolate, herbs, tea, coffee etc

LOL!!! When I saw 30 different plants, I thought I don’t even know if I can name that many plants! Then I thought I guess I could if I count each variety of greens, squash, potatoes, etc. I believe the nutritional content varies among the different types of the same plants.

I’ll see if I can name 30 plants found in the grocery store.

1. Spinach
2. Kale
3. Collard greens
4. Turnip greens
5. Turnip roots
6. Mustard greens
7. Dandelion greens
8. Chard
9. Bok choy
10. Butterhead lettuce
11. Arugula
12. Romaine lettuce
13. Cabbage
14. Bibb lettuce
15. Radishes
16. Eggplant
17. Yellow squash
18. Butternut squash
19. Acorn squash
20. Spaghetti squash
21. Sweet potatoes
22. Irish potatoes
23. Red potatoes
24. Onions
25. Cucumbers
26. Zucchini
27. Bell peppers
28. Banana peppers
29. Green beans
30. Sugar peas
. . . . . Okay, I guess I could name even more!

WalkingbyFaith said...

LOL!!! When I saw 30 different plants, I thought I don’t even know if I can name that many plants!

yeah, it sounds unlikely at first - but if you listen to him - he counts lots of things that can quickly makeup the numbers
eg - mixed herbs mix - is counted as all the individual herbs in it - as they are all different plant species
and the same for things like a nut and seed mix

he thinks doing that one thing alone - moving away from large quantities of a small number of plant based processed foods that currently form the majority of the western populations calorific intake today - towards this eating of a much more varied and unprocessed diet is the biggest beneficial change we can make - and that by focussing on getting the number of different plant foods up - people would automatically improve things like insulin resistance, weight, heart disease etc.

this advice is in stark contrast to the USA and UK Government's official guidance - which is more around calories, sugar, salt and fat etc
but his group is running some of the largest controlled trials in the world on nutritional science and finding that calories from one food behave very different to calories from another in humans - if one compares processed food to unprocessed food for instance - and as a result calories are not a good measure.

and also that things like blood sugar response and systemic inflammation are regulated in large part by the microbiome - and varies dramatically from one person to the next - so again - the current mainstream reductionist macronutrient based guidance falls short.

I'm not sure if they have everything 100% right - but i think they are closer to the truth than the standard government sponsored guidance - and seem committed to following the science - rather the interests of the food industry giants.