Hand and foot pain

its often very hard to tease apart symptoms patterns to determine which bug is responsible

i am a subscriber to the theory that by the time we are properly ill - there is a compound infection with multiple bugs at work - and the symptoms we experience are then due to the combined actions of these infections - rather than separate distinct entities.

then the symptoms we experience are usually mainly driven by actions and reactions in the immune system - and our individual immune systems are quite different from each others - which is why the symptoms vary from person to person so much -

so i think there are at best some general flavours or slight leanings in symptoms - rather than any really clear stereotypical patterns for each infection - even though thats how its often portrayed in papers / books etc i see those as kind of indicative cartoons of what patterns exist - rather than what to expect in real world cases.

that said the 1 month to return of symptoms would seem to fit with Lyme more than say bartonella - which is supposed to be faster growing and therefore faster relapsing
the migrating joint pain is a classic lyme symptom - one that horowitz published has good diagnostic value in distinguishing between lyme and other fatiguing illnesses.
the response to dapsone is also a fair indicator of lyme -
it is active for bartonella - but seems most active for Lyme - sometimes even standard dose or even half dose being enough to help a patient clear a simple lyme infection ( from Horowitz's - how can i get better book )
but his later trails showed much lower success if either bart or Babesia was present

the shin, and foot pain sounds like classic bartonella - bartonella generally seems to have more pain associated with it - usually varied or general forms of muscular skeletal pain

Bart also seems more associated with
- mood disorders / poor mental health / anxiety / anger
- digestive issues - from simple bloating to crazy severe intolerances
- MCAS reactions
- lowered body temperatures ( when not treating)
- many symptoms seems to be caused by changes in the microcirculation
- also a strong driver of auto-immunity

Babesia seems to be more associated with
- periodic sweats or temperatures ( but not if other bugs like bart are in the picture)
- fatigue and Post Exertional Malaise
- often mild liver swelling (hepatomegaly)

i think its an oversimplification to think of there having to be a single dominant infection
that might be the case for some people- but we know these infections work together to make the patient sicker - so there is no reason to believe that one must be dominant - other than that might be what we would like to be the case as it would make treatment simpler.

from what you describe - along with failing the dapsone protocol - i would say Lyme combined with bartonella fit the picture pretty well.

that's also what i believe i am dealing with also by the way - bartonella 100% definitive via microscopy - lyme positive IgG and IgM at Armin.
i am making progress but am continually surprised at how much i have to do to make even the smallest step forward. its a tough combo.

i hope its of some help to you

Everbark said...
As I am recovering from failing to complete the high-dose dapsone protocol I am trying to decide next steps. Part of that is guessing which infection might be dominant at the moment and thought some broader input from this community would be quite useful. Does anyone have thoughts on whether the following symptoms might be more likely arising from borelliia, babesia, or bartonella? Early in the flare up that made me realize I am dealing with tick borne diseases about a year plus ago I had a lot of migrating large joint pain. Those were some of the first symptoms to be relieved with the initial antibiotic and herbal treatments after several months. But then I developed pain and swelling in a number of finger joints. Some middle joint locations seemed to be sites of old injuries as far as I can remember and they are now painful and slightly swollen all the time (can’t wear my wedding ring since last March), though worse in the evening than the morning. The distal finger joint pain and swelling is more intermittent and is accompanied with nodules and redness and cycles of burning pain. I also have intermittant pain in the tops of my feet and front of ankles that frequently has me hobbling one step at a time, especially in the evening. I have had this off and on for years and podiatrists were completely stumped, but now I am sure it is part of the spectrum of tick illnesses. These pains subsided completely about 5 weeks into the dapsone protocol (which included a number of other antibiotics and supplements), though I was never able to put my ring back on, my big hope for demonstrating I was better. But alas, they are back with a vengence about a month after stopping the protocol. These symptoms, along with fatigue and brain fog are my primary complaints at the moment. Does anyone have any thoughts on which bug to lay the blame? Thanks!

It’s hard to differentiate between which one is causing you grief - that’s why my llmd treats all patients for the three “B” s.

My LLMD has his patients start with Babesia (after a few months on stabilization - ie sleep issues , pain… etc) and then moves on to the Bartonella/persisiters and throughout treating Lyme.

The protocols do differ from patient to patient… as there can be other things he needs to address.

Thank you all for the great responses, as always! It is so hard for me not to try to force some kind of systematic logic that will clearly lead to the right answer for what to do next. It’s the way I’ve lived my life til now, mostly with outcomes that moved me forward, but my background is physical science and biology is a whole different world. It has been hard for me to fully accept how uniquely each person’s internal ecosystem interacts with whatever coinhabitants are on board and how they interact with each other, despite the mountains of evidence in front of me. I just spent a year in the “I’ll be the lucky one and it will all be over soon” frame of mind and am now transitioning to acceptance that this will be a long and complicated journey. I am certainly grateful for the progress I have made, but I will always hate that I have to keep making decisions about what to do next when I don’t feel fully equipped to make the most efficient choices. Maybe I should take the financial leap and go see Dr. J who many of you have expressed would be what you would do if money were no object (not my case, unfortunately, but if I make a case for spending a big chunk now to avoid extra years of care down the road I might convince myself). I wish there were someone comparable on the US west coast.