Bent Toes with (Sometimes) Small Blisters

there was a thread recently about blisters on toes - associated with Bart - several people who had confirmed Bartonella had episodes of painful blisters - similar to "COVID toes" - will see if i can find the thread.

Thanks for the information and link. The pictures look different than what I'm experiencing. It's almost like very small cuts. My use of the word blister may not have been a good reflection of how it looks. The one thing that did feel, look and hurt like a blister was under skin, but on my finger, just behind the fingernail.

Guess it's the same problem I've seen posts about in the past - Lyme or autoimmune. I've felt bad all day today after being out in the sun working for a while. Spent the rest of the day on the couch and even missed track practice, which I rarely ever do.

I guess the concern for autoimmune is back, despite tests and doctors not thinking it is autoimmune. But I've read so much about seronegative autoimmune, which the doctors seem to dismiss. The only test that has ever come back indicating some autoimmune were the low C3 and C4 tests more than a year or so ago.

Skin is still devolving, joint issues, fatigue - just don't know. I am beginning to think this cant be "just" Lyme.

dcd - First, I don't know if you saw my late reply to your post about EBV. Wondered about your results as the interpretation of the results, according to charts, is kind of different.

As far as Sjogren's goes, I don't know if I have ever had the early antigen test for it. The SS-A and SS-B were <1, so I figured I was good on that. But I will ask about the early antigen. As far as the C3 and 4 goes, at one point both were low, but the last couple of times the C3 was low normal.

There just seems to be more than Lyme going on. But then the loss of elasticity and collagen started many years ago and I had several positive Lyme tests, and the last three Dr. Jernigan did were all positive by PCR for Lyme.

Wondering if Lyme can cause these autoimmune type symptoms. Lupus tests have also come out negative several times, including the AVISE test, which is supposed to be more accurate and sensitive.

If you haven't seen my response to the EBV questions, maybe take a look and se what you think.

regarding Auto-immune disease concerns

i personally would not be too concerned about a auto-immune diagnosis per se.

from my reading of the scientific studies around this topic over the past 5 years it seems that chronic intra cellular infections like lyme, bart etc cause many auto-immune reactions in just about everyone who has them. along with other potential drivers of course - eg mold, heavy metals, man made toxins etc etc

that is not to say we all have Sjogren's or other specific named auto-immune disease.

its more a case that there are around 5000 or more different proteins in the human body and its possible to develop an auto-immune reaction to any one of them at any point.

there are however only around 100 named auto-immune conditions - and so there is room for vast number of further auto-immune like conditions that simply do not have names.

in addition the immune system is messy and operates a kind of fuzzy logic - rather than a precision digital approach - in fact most / all of us have ongoing low level production of antibodies to many things in our bodies all of the time - for instance just look at the "normal ranges" for antibody tests for anti-thyroid hormones and you will find some level of anti-self antibodies are "normal" in many instances ( normal is of course a relative term - but at least its a level not associated with any overt symptoms). so some level of anti-self antibody production is normal and is likely to be fluctuating up and down all the time in all of us to some degree as our immune system is in a state of flux at all times - armed and actively patrolling for threats, pathogens, debris, toxins etc etc .

so my belief - which i think is quite well supported by the scientific literature on the topic - in these weird chronic diseases with stuff replicating inside our cells and constantly needling our immune systems, we may be experiencing much higher levels of self reactivity to a broader range of "self " substances in our bodies than the norm - it seems likely that this is often responsible for driving the very broad and variable array of symptoms in this patient population and these reactions may also often show up in non specific auto-immune markers - or borderline specific auto-immune markers - but just as often show up in none of the more common auto-immune screens - because no test has yet been developed for every possible auto-immune condition - only some of the more common ones.

however these need not be viewed as life long reactions that are incurable - and may well fully resolve once the trigger/triggers are removed. in fact that is what many people who have been ill with lyme and associated illness report after recovery.

well read people on the topic like Buhner claim that even auto-immune reactions in the brain typically calm down once the infection is successfully treated - though it is known to take some time to do so - maybe 6-m to 1yr - and of course other triggers are also possible organic toxins, mold, heavy metals etc all dysregulate this immune homeostasis.

i guess my message is mainly one of hope - that this is just a symptom of the underlying issue - and not necessarily an issue in itself - other than to work towards trying to address the root cause - and to keep up the good fight and keep moving forward.

Garzie - thank you for that information. All this keeps one's head spinning, as you know. What you mention goes back to my basic question: Is this Lyme cuasing autoimmune symptoms or simply autoimmune? And if I ever clear the Lyme, will others go away? You address that, and it is appreciated. Just so many tests still point to Lyem, but, recently, things have really gone backwards.

dcd - I understand what you are saying about EBV. The charts for test results show different answers. Then throw in the mix of the negative EBV-DNA tests. I've read many articles and studies on EBV-DNA, and from what I comprehend, and what doctors seemed convinced about, is a negative EBV-DNA means there is no replication taking place and EBV is not active. Yet, as you point out, the positive IgM is still out there. Reading about it is confusing, to say the least. But as soon as three different doctors saw a negative EBV-DNA, they said the EBV could not be active.

It just doesn't make sense to me, and it sounds that way with you. Have you had an EBV-DNA test done?

running wild said...
WBF - I'm sorry I missed your questions when I past looked at this post. I appreciate your help, always, and thoughts.

I am still in touch with the Biologix Center and working with them. They have been tremendously supportive. Just received another email from them about what is going on now and suggestions on what to take, with them taking kidney situation into consideration. The strange rash that has popped up twice must have something to do with the toes. I am treating Bartonella through Biologix and now Lyme again.

EBV symptoms went away for a few months, at least, but now those type symptoms are back. But it could be from treating Bartonella again. Like so many things, we just don't know. My EBV tests are confusing, as discussed with dcd. I hope your mold problems are better. You still dealing with it all?

The symptoms you describe are very similar to mine. swelling/twisting of the toes and red sores on the foot. occurs and then re-forms. I am researching an inpatient clinic abroad as there is no llmd in my place. Are you satisfied with biologix? Did you see any improvement? I would be very happy if you could talk a little bit.

Bailey said...
What exactly do you mean by bent toes? I don’t know much about this but because I don’t have it, but lately people have been screening me for ehler’s danlos syndrome (Eds) which apparently results in hyper flexibility and connective tissue issues. There’s a lot of people with eds who also have dysautonomia and mcas.

i think Lyme can imitate EDS also - by breaking down the elastin and collagen fibres in our connective tissues
i have heard of several accounts of people with lyme being mis-diagnosed with EDS before they got a Lyme diagnosis

The toes are hard to describe, but sometimes they just aren't "straight." It may be related to an inflammatory condition I seem to have now, which doesn't mean it's full-blown autoimmune.

As Garzie mentioned, a lot of people have conditions get better with Lyme treatment. That is what I'm leaning toward. Doctors will just blow off the Lyme factor, but it's good to have it checked just for peace of mind. It's very easy to let your head get away from you with worry. Many on this site can relate. Hang in there.