Some of you are aware of my recent foot infection. It appears to have spread into my ankle and shin. But, it is also displaying some strange signs that make it seem more like tick born infection.
Have any of you experienced Lyme or co-infection pain in the foot and ankle? I'm not talking about the typical burning on soles of feet or neuropathy.
I'm talking about-- bone pain, severe joint pain, even feels like I rolled my ankle, painful to walk. And also -- bones through out foot are tender and sore.
Just looking for some feedback from other Lyme sufferers... unsure if I should head to conventional doctors or treat tick borne infections.
Thanks for any experiences you can share.
And no -- it is not an injury from a slip and fall.
Posted by Tincup (Member # 5829) on :
Hey BR,
Here is a fairly recent article about Bartonella and bone invasion. It states in part...
"Bone involvement is characterized by well circumscribed osteolytic lesions, painful, cortical or periosteal, which mainly affect the long bones and are observed in X-rays. B. quintana is associated more often with bone changes."
Bartonella quintana, also called "shin bone fever" from the pain in the shin bones (obviously), can cause pain in the shin bones, ankles and foot.
Often dogs have bone pain in their legs and bone biopsies can show Bartonella infection (sometimes misdiagnosed as cancer if they don't use Bartonella specific tests).
I sometimes have bad pain from Bartonella in my shin bones (deep inside it feels like), so bad it is difficult or impossible to walk.
Also get shin splints a lot, which can occur on all 4 sides of your lower legs, which I didn't know at the time. That hurts!
Hope you get some relief soon! And answers too.
Posted by Tincup (Member # 5829) on :
I also have a "bump" or mass about 3 inches long by 2 inches wide along the shin bone, about 1/2 way between my ankle and knee.
It isn't raised above the skin level except slightly- most is hidden underneath the skin layers and right along the bone.
I can feel the lump along the bone when rubbing my hand down the length of the bone.
A smaller one, about 1/2 that size, is in about the same place- front of leg- on the other leg.
???
Posted by Tincup (Member # 5829) on :
Here is a study mentioning 60 plus additional cases found in the literature of Bartonella and osteomyelitis.
So if I assume for the sake of argument that it is bartonella, that would mean it's not a "conventional doctor" emergency, right?
The pain in my shin Area is also more off to the side, a bit away from the shin bone... feels like in muscle or soft tissue. Does your "lump" hurt?
Posted by map1131 (Member # 2022) on :
IMO, your foot injury has stirred up some of the bad guys that have been in hiding and under control for some years.
One big stressor and boom. We've seen it and read it from hundreds over the years.
It's time to come out with guns blazing. You know exactly how to battle them. With all your being...you'll knock it out again.
Bart bone pain I consider to be the worst pain.
Pam
Posted by Razzle (Member # 30398) on :
Sounds like RSD/CRPS, which is suspected by many to be related to Bart/Lyme. I've had this in my foot for a long time. Initially, mine was from injury (sprained foot), but RSD/CRPS can also be triggered by puncture wounds, surgery, etc.
Some research suggests high dose Vitamin C can help prevent development of RSD/CRPS (study done with wrist fracture cases), and probably can also help treat it once it develops.
Some believe RSD/CRPS is from reperfusion injury. Injured body part swells up, stopping blood flow. When blood flow is restored, the rush of blood is so fast that it damages the nerves, leading to inflammation-pain perpetuation after healing.
My RSD/CRPS went into remission (after having had constant pain for 4 years) with aggressive physical therapy. The only thing that helped the severe pain for me was antihistamines (Benadryl).
Epsom salt foot soaks in warm (not hot) water may also help.
Whatever you do, it would be good to make sure it isn't infected with tetanus. Distance energetic testing is good, but also might be worth another doctor visit to make sure.
Posted by Tincup (Member # 5829) on :
BR,
I certainly can't tell you what to do, but if it were me I'd treat for Bartonella and see how it goes.
But, if it gets any worse or doesn't improve quickly I'd get some tests done and maybe a duck docs opinion to see if that would help. (I don't have much faith in that route so I am terribly biased.)
My "bumps" themselves don't physically hurt on a regular basis, maybe not at all? But...
It is the area around the bumps and headed north and south along the bone and beside the bone that hurts a lot.
Almost like the bumps don't have feelings cause they are knots with no nerves? (I know some guys that fit that description too.) HA!
I know, not a very techy or medical-like explanation, eh?
A big concern for me, if it were me, would be if the pain spread any further north or if I became sick-sick all over or got a fever or higher white count (systemic).
THAT would make me think it should be treated like an emergency.
Please don't think this is medical advise. I don't want you to risk anything on my opinions. Use your best judgement.
Otay?
Posted by Tincup (Member # 5829) on :
Was going to post a link to the break bone pain, but then saw you've seen it.
I personally know two patients (patient advocates & friends) who had the osteomyelitis Lyme or Bart (if we knew about Bart back then, can't remember) diagnosis.
Both were seriously ill at the time. If you want me to reach out to them I certainly will. Don't know if they'd be receptive to communicating, but possible?
I just got an email from Tincup asking me to pitch it, so I guess I'm one of the two people she referred to with osteomyelitis.
This was about 7 or 8 years ago and I do not think I ever thought it was related to Bartonella. I was in treatment with an excellent LLMD at the time who seemed to see the problem as I did - a serious infection in the jawbone resulting from dental negligence o an infected dental implant.
The word osteomyeletis makes my hair stand on end, though. You can die from it. If I remember correctly it can travel very quickly and does not necessary show up in contiguous parts of the body (I think).
I know people do not like to take antibiotics, but I think it's a suicide move to mess with a spreading infection in the bone. I think that seeing a conventional doctor can be life saving in some cases, and this is certainly one of them. I would go as soon as possible. Ellen
Posted by Robin123 (Member # 9197) on :
Here's wikipedia on osteomyelitis - I agree that you should get it checked out immediately medically, if only to rule it out.
Last night while thinking about Bryan's issues....something came to mind. We used to have treads about complete virus panels.
People where having these blood tests and finding themselves testing positive for things like HHV-6, streptococcus, mycoplasma pN, etc. It was a long list of these type viruses and bacteria(s).
I keep thinking it was called Comprehensive Blood Virus Panel and I've searched and searched and can't find what I'm looking for.
Help! It might help identify his infection.
Pam
Posted by bluelyme (Member # 47170) on :
After i stirred up bugs i went through a wasting period ..hanfs and feet felt like they were being eaten by piranha . ... lost meat in a very painful few months ...whish i had encysted it with doxy or something ...
i think its bart and spiros eating the nerves and claudation that happens afterwards. ..
if you got nothing left to lose but your leg or use of it ..i highly recommend you order some bees and get stinging ...if you are not on gram neg coverage abx wise it couldnt hurt either ...
roceph bvt and zith /rifampin has slowed the wasting nerve damage ... keep us posted bryan
Posted by BryanRosner1 (Member # 49076) on :
Thanks for everyeon's feedback. I don't feel like this is "fast moving" infection, it has lingered and languished for 6 months. Also, it started in the left foot where the puncture wound was, then it moved up into that ankle.
But shockingly, I then started to feel it in the OTHER leg ankle, so it doesn't seem to be moving contiguously.
I did have an MRI done and it showed all normal. Also had several blood counts and all blood work normal. Including white cells. This makes me think it is more of a Lyme thing rather than a raging conventional medicine thing.
Also, the conventional test that is the "next step" to look more closely than the MRI, is a bone scan, and they require injection of radioactive material into my body (the dye) to do that. I worry that I could have a reaction or side effects to this bone scan, so I'm not sure...
There is also an "indium tagged" bone scan they can do, but this requires a similar procedure and even sending my blood AWAY to be tagged then BACK to be reinjected into me. I worry that this could cause a mixup and I get someone else's blood injected, maybe Hep C or something.
So it seems like there are risks in all directions, you know?
I have started mild hyperbaric and breathing oxygen at times without pressure, and this does seem to be helping.
Another interesting thing to note - the pain does mostly seem to be concentrated in the JOINTS, that is, ankle joint, and maybe a little in the knee. I do not think osteomyleitis would be concentrated in the JOINTS per se. So that's ANOTHER thing that points to "Lyme" and not some "conventional" infection.
By the way, I did treat for Bart over the last week or so and it has also helped, so that's another thing that points to Lyme.
Anyway, I welcome continued feedback and thanks for everyone's support.
Posted by Razzle (Member # 30398) on :
Pain jumping to the opposite limb (e.g., left ankle to right ankle) is one of the symptoms of RSD/CRPS. Bone scan is gold standard for diagnosis, but I wouldn't bother. Just treat the Lyme/Bart. and maybe consult pain management specialist also, to ask about RSD/CRPS treatment.
In the meanwhile, try very hard to avoid surgery or puncture wounds...RSD/CRPS likes to spread to new locations. Mine jumped over my knee and up to my thigh after a self-injection...and then into my hip after a doctor gave me a B12 shot.
I still get residual pain in the initial location (right foot) but keep it under control as long as I'm able to get a little exercise.
I also agree that joint-centered pain is very suggestive of Lyme as an underlying issue.
Posted by BryanRosner1 (Member # 49076) on :
Razzle that's pretty fascinating and does describe my situation perfectly.
Why would they do a bone scan? RSD affects bones?
I will say that many treatments and herbs and stuff, affect the pain. It definitely responds to antimicrobials. So do you think RSD can be caused by direct infection?
Also, I've had a lot of muscle contractions in the foot that had the wound. i.e., my toes will just want to curl up and stay there. This is why the doctors suspected tetanus. Can RSD cause that?
Very interesting.
Editing to add: can RSD cause swelling in nearby tissue?
Posted by Razzle (Member # 30398) on :
Yes, RSD affects the circulation and therefore the bones (and many other things).
Inner circulation (I'm thinking this means arterial) is usually increased, leading to increased bone breakdown (shows as increased uptake on bone scan); exterior circulation (I'm thinking this means venous) is reduced, leading to changes in skin thinning, hair loss, nail changes, color changes (blotchy, reddish, or bluish) and muscle wasting. Swelling also can occur because of the poor venous return.
Yes, I do think RSD can be caused by direct infection. Infection leads to inflammation, which can lead to RSD.
Contractures are a known symptom of RSD, but also yes of Tetanus. I'd encourage you to get a 2nd opinion on Tetanus if you can, even though it's been a while since the initial injury.
Razzle, I don't have most of the symptoms on that RSD fact sheet, though I do have some.
Maybe my presenation is different because it is tick infection related.
I don't have changes in skin appearance, sweating, etc. Also, it seems like the burning sometimes encompasses the whole left side of my body, even my left arm.
Lyme land is so strange.
Razzle have you looked into hyperbaric oxygen? I can't remember if you are on the mild hyperbarics thread... this is what I'm going to do next.
Posted by Razzle (Member # 30398) on :
Not everyone with RSD gets all the symptoms. I never had contractures, for example. And not all the symptoms appear initially - it takes time for some to show up. You are still early in the process if it is RSD, which is the best time to be proactive and work to prevent spreading and worsening.
Yes, the pain can occur in an entire part of the body on occasion, even if the primary place one has RSD is more isolated to one (or a few) locations.
After flying in an airplane, my entire body from head to toe was on fire, but that calmed down a few hours later and then I only had pain in the specific areas affected by my RSD again.
Yeah I have looked into HBOT. I can't do it, since my nutrition (antioxidant status) is too poor (malnutrition and malabsorption) and I don't handle sufficient doses of fat-soluble vitamins or vit. C very well.
Yeah, Lyme land is very strange.
Posted by BryanRosner1 (Member # 49076) on :
Razzle, some say that hboc is excellent for antioxidant status because it causes your body to produce more glutathione and SOD.
So as far as preventing the spreading of RSD - what are the best approaches for that? What has worked for you?
Posted by Razzle (Member # 30398) on :
I agree producing more glutathione is good -- in most cases. However, in those like me who have the upregulated CBS gene variants, this can backfire and cause a whole ton of problems.
I react very badly to things that stimulate glutathione production, because it just further overloads the enzymes down-stream of the CBS enzyme (e.g., sulfite oxidase, etc.) and then I wind up in anaphylaxis from the sulfites. And because I am not currently able to get any nutrition orally right now (severe gut dysmotility), I can't even begin to attempt to compensate for the upregulated CBS genes.
Ok, so to prevent RSD spreading, one must stop the pain cycle and avoid additional trauma/injury to the body. Instead, the brain needs to be re-trained to accept normal activities as "not painful" even though they may hurt initially. This is why aggressive physical therapy is important...but must be done very carefully so as to not increase the inflammation.
I started with one repetition per day of only a few exercises, plus Epsom salt foot soaks as tolerated. It was a very slow process, and even the one rep/day increased my pain a whole lot initially. But I was determined and pushed through it and eventually the pain started to recede.
The only thing that made the pain decrease other than the physical therapy was Benadryl. I don't know why. I just know that no other pain medication (including narcotics, muscle relaxants, topical lidocaine, low-dose antidepressants, gabapentin, etc.) helped as much. YMMV.
I did not know I had Lyme/Bart. at the time, but an allergy specialist was working with me to reduce my immune system reactivity to things at the time, and I believe that also helped calm down the inflammation.
The world-renowned RSD expert I consulted for diagnosis (couldn't get a proper diagnosis elsewhere, as at the time, RSD was considered "all in my head") suggested I focus on reducing inflammation through diet modification also - he recommended his own variation of the Mediterranean diet and anti-inflammatory supplements (e.g., Omega 3 fatty acids, Vit. C, etc.) to all his RSD patients.
In my experience,my ou have exactly described Bartonella Quintana!!!
I also had the horrible "shin bone fever" or "bone break fever".
The level of pain that this infection causes is nearly unbearable. I literally could not walk any longer because my tibia & fibula hurt so bad that they felt like they were broken in little pieces.
My poor feet were even worse. They felt like they had been literally crushed by something unimaginably huge. I couldn't even touch them without crying, and I am a very pain tolerant person!!!
We tried other treatments before resorting to the most powerful but it came to the point that we just couldn't play around anymore.
The only treatment that works is targeted for Bartonella Quintana, even the CDC admits that it is needed for this bug. Of course, they would want test results but that is up to your practitioner.
I truly doubt that you have RSD. It just sounds so much like Bartonella Quintana. Please discuss everything with your doctor.
Posted by tulips (Member # 44773) on :
I also have lumps along my shin which are painful and hot to the touch. I did some research on herbal treatment for osteomyelitis and found that there are some herbs that are listed as helpful. I took an echinacea 4 times throughout the day yesterday and this morning the swelling is down and no longer hot to the touch.
Posted by lookup (Member # 44574) on :
Some homeopathics that might help are Ruta graveolens (Garden Rue) and Ledum palustre (Wild Rosemary).
Ledum is the first remedy to use after a puncture wound, esp. if it could involve tetanus. It can be taken on the way to the doctor.
It is also used to get rid of hard lumps that remain after an injury.
Ruta is used for shin splint pain.
It has an affinity for healing the lining of the bones anywhere in the body.
For example, it's even helpful for after oral surgery where there has been scraping around on the jaw bone, etc.