Still have osteomyelitis?
Posted , 6 users are following.
Hi all I'm new here. Just getting nervous, because the week of July 4th after a camping trip I was admitted to the hospital with osteomyelitis of the calcaneus (and possibly according to the MRI) the talus. I spent almost 3 weeks in the hospital having a debrediedment of the bottom of my foot and back of my ankle/heel, and IV antibiotics. I was sent home on oral antibiotics for another 4 weeks. At first I was able to walk with a limo and a little pain, fast forward to 2 months ago and I'm in excruciating pain and can no longer walk without crutches. After finally getting some insurance together an xray showed some possible bone softening a month ago in the ER and I finally have an MRI scheduled for 2 days from now. I'm nervous that I may still have om, but in a way will be relieved because then I know what is going on...and the treatment that will follow, probably another few weeks in the hospital for antibiotics and possibly surgery, BUT if not...then what?! I've been waiting 2 months already for insurance to clear so I can get treated for this, I guess I just needed to vent a little because no one else can understand what I'm going through. I'm a scrub nurse so the idea of being in the hospital and surgery don't bother me, lol it's the not being able to walk or bear weight for 2 months is killing me, and if it's not om, well then it's like I'll have to start this over. Has anyone else out there not responded to initial treatment? Any responses would be sincerely appreciated: )
0 likes, 11 replies
jake11855 pmr0610
Posted
Hi, first thing I want to say is my heart goes out to you.
I have been trying to quell an OM infection in my jaw for 5 months (but it's probably been there longer). I've hesitated to take steps & am just holding it at bay because dentists either don't seem to want to talk about it, or have solutions I'm not confident in for very good reasons.
While I can't speak to your situation in specific, the first thing is I assume you don't have coverage in your country for hyperbaric therapy (it speeds up healing). However, I've found some things that allow me to be confident enough to share that should stymie an infection (it's easy for me to monitor if it's growing or not).
I'm going to treat your issue like a recurrent infection, and even if it's not (and it's just inflammation) I think it might be susceptible, so you may want to consider this stuff anyways.
#1 Diet. Cutting out carbs & sugars, and moving to a ketogenic diet (while hard at first) has been amazing. Bacteria feed off of sugars, and cutting them out has been a big blow toward the bacteria in my jaw. Also, fermented foods are going to be desired following oral anti-biotics; ~80% of your immunity rests in your microbiome. (I also juice bitter/strong (ginger, peppers, garlic, onions) stuff and that makes a difference).
#2 Garlic. Not a fan of "cure-alls" or putting faith in any one specific thing, however garlic is rocking the show for me right now. I have pre-existing digestive issues from mercury poisoning from 12x, 50% mercury fillings in my mouth, so no anti-biotics. Garlic has to be eaten raw for it to work, but it's now my preference to antibiotics, especially with bone infections- where anti-biotics have a hard time reaching- so it's important to use something that they won't just gain immunity to, especially if you're in an "I don't know what's up" phase. It's easy to access, just mix with food or tough it out. I know a guy who ate 2 heads a day once every 3 weeks, so a couple cloves a day can't be so bad! I eat it raw half the time, and ideal is 1-2 cloves, 3-4x/day.
#3 Balance. This is really #1, to be honest. I believe (along with many respected others, and science/psychology/sociology) that our emotional, relational, and spiritual balance is essential to our immunity & overall health. If we harbor unforgiveness, it'll bring us down, and if we feel forlorn, alone, or unloved- we're not going to be in a good spot to overcome the physical things. My decade+ long health struggle has really opened me up this way, and helped me cultivate a deeper appreciation for what's most important in this short life. I'm thankful that God has allowed these things to catch my attention, or I'd be missing out!
#4 Herbs (Chinese medicine): good at reducing inflammation & helping our body face infection. You may want to consider "Ya Zhou Yan" complex; while it's for tooth inflammation, it's for hard-to reach infections, I believe, and worth a shot (they're very affordable, since.. they grow on trees, right!?)
#5 Essential oils: I'm still compiling a list of anti-biotic oils, and figuring them out, but so far they definitely provide immune support. The best part is that you can combine or use a variety, and if you rotate on short cycles & keep the pressure on, I believe it's hard for the bacteria to keep up.
All of this stuff is natural, relatively accessible, not too costly (vs diagnostics, Doctor's bills, etc) and hopefully will give you an idea as to what you're facing, and maybe even help you over it. We are responsible for our health, at the end of the day, and if we put our faith in the hands of the doctors (that I'm sure were confident months ago when they talked to you about how they were going to fix it, right?) than we have to accept the results we get. OM can be scary because it can keep going, so may we defend our bodies with all we can, and keep faith/keep making the most of this journey. It's a great time to grow, especially as someone in the health field- there really is so much to discover, and it's effective! All the best with your immunity and healing/reaching that infection ~
pmr0610 jake11855
Posted
Thanks Jake, I will certainly look into your suggestions. I got my mri results, all consistent with "infectious etiology likely osteomyelitis" also with possible bone and subcutaneous abscesses. I go to see the ortho today, and am bringing an overnight bag with me because I fully expect or am going to pretty much demand that he admit me to the hospital if he thinks he has other ideas... Number one, after my previous (however long stay) and treatment on iv antibiotics I was walking better than the following month of oral antibiotics (which thankfully the pharmaceutical company paid for... They would have been $17,000!!!) it was during that month of oral antibiotics the problems started. Thanks Number two...over the past week I've had a soft spot growing (likely abscess) underneath the bone on my inner ankle. He had also mentioned doing a bone biopsy. I'm OK with that as well, but if he doesn't admit me, which here in the US requires going through the emergency room, he won't be able to get any of this done, because his office does not take my insurance. My insurance company won't approve it. What a nightmare, that would mean having to start all over with a different doctor and more waiting for treatment. I think I'm rambling at this point, lol a lack of sleep will do that. I hope they can find a solution for you as well, I can't imagine having this debilitating condition in my jaw! Good luck to you, it and keep doing what you're doing, it seems to be working well for you at this point, but there needs to come a time when your doctors came come up with a viable option. I'll post an update when I know more. Have a great weekend!
pmr0610
Posted
Well, hello all, and Happy Holidays! I have an update since my previous posting, I've just spent 34 days in the hospital, since my MRI showed I did in fact still have OM pocketed in my ankle, so after yet another surgery, a picc line IV Vancomycin, Rocephin, and a 30 minute infusion of Dalvance upon discharge, I can finally take a few wobbly ungraceful steps with one crutch, I can do a little weight bearing without crutches, and fingers crossed I hope I'm on my way to walking once again. I get a little frustrated because my surgery was a month ago, but I have to remind myself that I wasn't able to walk for almost three months before that, and the infection had been festering in my ankle since July, and I'm not going to be running marathons tomorrow, lol not that I ran them before! Its going to take time to build that lost muscle and atrophied tissue back up. I hope all of you are hanging in there, this is an ugly situation, and by all means don't ever take no from your Doctors! Treatment is paramount with this disease but it is treatable! Happy New Year everyone!
meaghan_23699 pmr0610
Posted
I’m so sorry for everything you’ve gone through! Sounds awful.
I’ve posted my story and had a couple questions. I had a joint replacement on your big toe in October and the severe pain, foot is discolored, swelling, etc. this is has been going on for 4.5 weeks. I just had a CT scan on Thursday and waiting on results, but did your pain come and lay off? Today is bizarre as my foot is still swollen and different colors, but around 2pm the awful pain kind of went away (never goes away, but big awful) can OM come and go in severeity? I still can’t even put any kind of heel on my left foot.
I pray something shows on the CT. I can’timagibe bot getting an answer!!
pmr0610 meaghan_23699
Posted
Hi Meaghan,
Ouch! If you're still having pain and theres a chance of it being OM, they really should be doing an MRI. I just had a third one done last week and saw my surgeon yesterday, because I'm still having pain in both my heel and ankle area. My MRI was lit up like a Christmas tree (if you know how an MRI works, if not, once they inject the dye, any kind of inflammation or infection basically "glows" in the images.), anyway my doc said there is no longer an active infection at this point, but he did say lol and I quote..."Your MRI was all jacked up!, and youll probably never have a "normal" one again." So he gave me a cortisone injection which is only helping a tiny bit, so he's going to work on getting a bone biopsy approved (because we both agreed that even though the infection isn't active, the scan was kind of questionable), and we may end up doing an ankle fusion. A CT should show inflammation, but whatever you do, don't take no for an answer, I understand the pain that comes with this, and yes, your pain can come and go in severity. I had my first surgery in July of last year, with some ankle pain after, but by mid-September I was on two crutches because I couldn't put ANY weight on my foot. If it is OM, be prepared to have a PICC line inserted (its not a big deal, just a long IV that goes in your upper arm, and ends at your heart valve, they'll do it bedside in your hospital room with an ultrasound to guide it), you'll probably be on IV antibiotics for 4-6 weeks, then switch to something orally. I'm in the US and that's pretty much standard protocol here. Good luck, and let me know how you're doing, I haven't found a lot of people dealing with this in the foot or ankle, so I'd like to know how you're making out ((hugs))! And hang in there, if you have a good doc, you'll be ok. My other 2 cents of advice, if your doc doesn't seem to be doing enough, find another! I switched from an orthopedic that did 3 surgeries on my foot, and went to a podiatrist that specializes in foot/ankle. Not that my ortho wasn't good, he wasn't as aggressive as I needed him to be. I needed him to be a aggressive as OM is! He was more nonchalant than I cared for him to be lol!
meaghan_23699 pmr0610
Posted
The swelling seemed to come down the last 48 hours, but the pain is bad and the swelling came back. It’s so weird how this is working and how long it’s taking to find answers.
As much as I don’t want OM at this point I may cry if he calls and says “nothing showed up on the CT”. That would be devastating because this pain is awful and constant.
Thank you again and I’m so sorry for all your struggles and pain.
pmr0610 meaghan_23699
Posted
Hi Meaghan,
Hope you're doing well, just wanted to check on you and see how the results of your CT came back!
Paula
meaghan_23699 pmr0610
Posted
Thank you for checking! He still hasn’t called back with my results so I went to the CT place and got the read out. It said “mild osteoarthritis”, but the toe has now spread the swelling to the foot and ankle. I’ve called him 3x for the results and no phone call. Nothing.
I’m just so frustrated and feel like I’m not getting answers and I’m stalking the doctor and can’t even get a phone call.
pmr0610 meaghan_23699
Posted
Wow! I'm sorry to hear that!
If you haven't spoken with your Dr. yet, DEFINITELY call the office, and let them know you got your report, and that you already know what the report says, and tell whoever answers the phone that what is going on is a pretty serious diagnosis, also let them know that it's spreading. You should be on antibiotics ASAP!
Keep me posted, and Happy Mother's Day!
Paula
dino1222 jake11855
Posted
you are an amazing person , i am sucfering and i agree with you - i just wish my om was go e but its not and it wont be without i teje tio of do tors which say its not there a cordi g to them - om is evil and relentless - i agree with your Advice but i wish i coukd end this crap once and cor all . peace
julien39927 pmr0610
Posted
Dear pmr and Jake,
I have just read your posts from 4 years ago with great interest. I am also a scrub nurse (pmr) and like you Jake have OM in my jaw. Jake I relate wholeheartedly to much of what you wrote (although I know you have the wisdom to understand that our bodies are all different and sadly keto, fabulous as it felt, actually was what led to my problems - I am a 'weak acid' type meaning that while lemon juice in water has an alkalising effect on many people it does the opposite to me as my body can't really handle acidity - keto, while I felt fantastic on it in many ways, resulted in calcium being taken from my teeth as my body attempted to counter act the acidic state caused by keto).
Anyway, I am on a challenging healing path. My CT scans are thankfully showing healing. Balance, soul healing in many ways, spiritual healing, yoga, hyperbaric oxygen therapy have all helped. Also without doubt co-amoxiclav and clindamycin. I eat organically and well and only but recently have become depressed after 9 months off work. I started occasionally eating a few sweet 'treats' to 'cheer myself up ' and rapidly realised they were exacerbating my symptoms. That led me down the logical path - if sugar feeds the bacteria what food poisons it? which led to garlic and your posts. I have taken my first dose of raw garlic today - freshly crushed , mixed with a little olive oil, yoghurt, salt and raw grated cucumber (let's face it the Greeks knew a thing or two plus tatziki is delicious) and just 2 hours later I can feel the bacteria being slayed in my jaw!
There is a woman at hyperbaric oxygen therapy who was booked for a jaw amputation but turned her condition around with just antibiotics and oxygen and after 18 mo the was free of infection. This gives me hope in my dark moments.
If by any miracle either of you or both get to read this post 4 years on please, please, please reply and tell me you are cured! You are both fighters in your own different ways and I feel there is a good chance both of you overcame this challenging course condition eventually. It would really help me to know how you both are now and if you have any more words of wisdom.
Julien