Osteomyelitis

Hi Friends,
Some of you may remember I had jawbone cavitation surgery Dec 8 of last year.

I traveled to the US to have the surgery with a holistic dentist. I was supposed to have all 4 wisdom teeth extraction sites and 2 former root canaled extraction sites repaired in 2 different surgeries. The first surgery was the right side top and bottom wisdom teeth sites, and tooth areas 3&4.

I had severe complications and never did have the left side done. I ended up staying in the US for 4 months because I was too ill to travel home. I STILL have sores/ulcers at the surgical sites and am in excruciating pain even with narcotics combined with ibuprofen. The holistic dentist washed his hands of me and I had to see a conventional oral surgeon who suggested a gallium scan which showed nothing.(Not sure of the validity of the this scan?) He did recommend IV ABX when I got back home from what was found on the pathology report of the surgery. He did not want to do any culturing since he said my mouth was already so "angry" and he did not want to exacerbate it.

Now that I am home I can't seem to get any help. My Lyme doc does not have a clue. He did swab the sores and we are waiting on that. I am currently not treating for Lyme, but that is another post.

Has anyone had or known someone with osteomyelitis? How do I get the help I need? Infectious disease doc? Are there certain ABX for infected bone? Can it be treated without IV ABX? I hear it is very difficult to treat. Does anyone know about Gallium scans? Also, I initially had viral ulcers(apthous). And perhaps that is what I still have. Does anyone know about these? Related to a particular virus?

*Also, I know we are all different, but I would be VERY cautious before having any cavitation surgery unless you KNOW your immune system is up for it. And only with a DDS who knows about Lyme. I knew this would be a gamble, but has turned into a nightmare. I would REALLY do your research! *

Post Edited (TrialbyLyme) : 4/26/2017 4:16:17 AM (GMT-6)

Bone infections are difficult and generally require IV treatment so the medicine will get into the marrow of the bone.

I am so very sorry. I bet your swab shows staph. That is the most common.

For a home help remedy, coconut oil would be the best. If you can't do the oil pulling, then put a little on a very soft toothbrush and brush the areas you can very gently. Spit out in the garbage.

Also some herbs would be good until you can get your IV and if you can find an herbalist, they would have great suggestions. I like Echinacea and Goldenseal and Astragalus and eat as much garlic as you can tolerate - or take the pill form.

A multiple vitamin is great for helping out the immune system also. And probiotics to keep your gut healthy.

So very sorry.

You will need antibiotics - maybe IV.
Possibly a surgeon to remove some of the infection.


Talk to your regular Dr. and ask for a referral...don't wait.

Thank you everyone for your replies and kind words.

It seems as though it's just as hard to treat as Lyme. The dentist who did my surgery, the oral surgeon, a naturopath, and my Lyme doc all agreed I need IV ABX but no one wants to pull the trigger. I will see a specialist tomorrow to see what they say. The problem is I already saw them a couple years ago for this and he told me nothing was wrong and I just needed a new night guard. This is why I went to the US. And this is the only oral surgeon my insurance will pay for. I could probably coax my Lyme doc into it but then it would all be out of pocket.

There seems to be this chasm between holistic dentists (who are great at FINDING the infection, but the rest balk at) and the oral surgeons for the serious cases to fix them. I don't understand how one dentist can look at an X-ray and see one thing and another something else. What the holistic dentist found was clearly infection and a lot of it. He said more than all the scans showed, in 3 areas. But conventional dentistry saw nothing. I guess the one thing I have going for me this time is the 2 pathology reports which show the types of microbes found and the diagnosis of osteonecrosis and osteomyelitis from the lab.

@Traveler: I am sorry you believe you have it too. It is awful! You would think it would be easy to detect! I stopped with the oil pulling but will start again. And yes, I need to start treatment again. I am so frustrated with my Lyme doc so I am going to have to self treat. I have just been putting it off because of this issue. I'm thinking of pulsing herbs with doxy because that's what I have. Perhaps this is something we will just have to live with as a Lymie. Booohoooooo!

@PeteZa: Thanks for the tips on immune herbs and brushing with coco oil. I had not thought of that. Will get ech and goldenseal tomorrow.

@Magoo2:Thank you. Dr. M was great. And in his defense he worked with me for a month after with halo treatments, homeopathics, etc. But he eventually said there was nothing else he could do for me and bid me farewell and told me never to see an oral surgeon. If this continues I will look into the places you suggest. We should be back in the US next year. I did find a place in Switzerland (don't remember the name) where the DDS starts you on an immune program before surgery, and also starts IV ABX before, during, and after surgery. I had no ABX with Dr. M which I think may have been a bad idea.

@Girlie: Thank you. I need that push!! I'm getting mad now and maybe that's what I need to be,lol.

@ChickenArise: Interesting. I am glad you are getting treatment and seeing some improvement. I will look at the link and Augmentin. I am sorry you are going through that but hope you continue to heal. Did you have to see an infectious disease doc?

Fwiw my nurse healed her cavitations with ozone injections and bee stings in her mouth!

Trialbylyme-- isn't it amazing how your dentist said everything is good then a biological dentist finds a major infection that clearly is a major and dangerous health issue. How dentist miss infection everyday and and people just continue to get sicker an sicker. My doc thinks all chronic lyme patients have a dental infection that if cured they would recover their health. I also cant help but wonder if lyme is really a "hidden dental infection"

FYI I thought I was Dr.M worse patient-I know that I am Dr. Yus worse case of dental issues.
For me long term antibiotics-together with ten pass ozone, RI ozone and homeopathics seems to be clearly the dental infections. Plus sauna-diet-ect. It sucks and is expensive but its working.

Check out a fB group called cypress or bust-this is about an ozone clinic that is getting very good results with chronic lyme and is not expensive

@Magoo2- Yeah it's crazy! And it was actually a handful of dentists. Infuriating! I had a consult here with an oral surgeon on Friday who will do a high res CT scan and I am sure they will find nothing again. But the surgeon agreed to try me on IV ABX so I'm crossing my fingers.

Lol, well you probably were/are Dr. M's worst patient. But I am his "problem child" as he calls me. Just everything that could go wrong seemingly did with me. And nothing he tried improved anything. Neither of us, I guess, was prepared for the Lyme beast to react the way it did. And it probably doesn't help my case with him, when he has people in office who have "Lymes" that work 40-60 hours a week, plus a weekend and night job who feel ok. Maybe in his mind (because) of this person, he thinks Lyme is no big deal. He did tell me on several occasions, "I just don't understand, because you look healthy. ". Ugh. Eye Roll. I told him not to tell people that. He should know better! Maybe now he does!

Thanks I will look for those FB groups.

@Traveler-Ok, thanks for the info about the herbs. Did not know that. I will just keep on with them but start out slow. And yes, Ozone will be in the plan for the future. I am so sorry to hear about your bone loss in your jaw. What has caused it? Lyme and Co's? Infection? Root Canals? Have you taken bisphosphomate drugs? That sounds horrible. I am truly sorry. Are you in pain? Surely there are things that help grow new bone? Are you dealing with infection too? I have heard things about boneset and comfrey and strontium for growing bone. But you probably know about those. When I contacted the biological dentist in Switzerland, they informed me that they won't even look at a patient unless their Vit D is above 70 because new bone won't grow under that number. That was news to me and kinda brought light to (at least) my situation. I can't tolerate Vit D supps and in fact have toxic levels of Vit 1,25. So was told by my Lyme doc to steer WAY clear of Vit D. I am doing GcMAF to help absorb it better. But that really peaked my curiosity. I do wonder if this is the case with other Lymies, and maybe you. Since Lyme disables our D receptors.

I hope, somehow, you can find relief. Big hugs xoxo

TrialbyLyme said...
@Traveler-Ok, thanks for the info about the herbs. Did not know that. I will just keep on with them but start out slow. And yes, Ozone will be in the plan for the future. I am so sorry to hear about your bone loss in your jaw. What has caused it? Lyme and Co's? Infection? Root Canals? Have you taken bisphosphomate drugs? That sounds horrible. I am truly sorry. Are you in pain? Surely there are things that help grow new bone? Are you dealing with infection too? I have heard things about boneset and comfrey and strontium for growing bone. But you probably know about those. When I contacted the biological dentist in Switzerland, they informed me that they won't even look at a patient unless their Vit D is above 70 because new bone won't grow under that number. That was news to me and kinda brought light to (at least) my situation. I can't tolerate Vit D supps and in fact have toxic levels of Vit 1,25. So was told by my Lyme doc to steer WAY clear of Vit D. I am doing GcMAF to help absorb it better. But that really peaked my curiosity. I do wonder if this is the case with other Lymies, and maybe you. Since Lyme disables our D receptors.

I hope, somehow, you can find relief. Big hugs xoxo

I had a few root canals, but my teeth generally would crack if I had one done, so not many at all - maybe one or two though? It's kind of hard to remember things back then for sure, as my teeth were just breaking down quickly, even though my gums never showed any signs of infection, redness, bleeding or any other 'odd' thing.

I've never had any bisphosphomate drugs.

My vitamin D levels were low at one time, but there was only one doc in my area that was willing to do the proper testing, and she and I had a falling out. My levels came back up quickly with supplementation though. I still take vitamin D during the winter months though.

Yep, I still have Lyme and Bartonella - both can get into the bones. Once I get those two infections under control, I do notice that my jaw is no longer inflamed as much, so once I reach that stage again, I intend to do all I can to help rebuild and stabilize the bones in my jaw.

I'm all on my own on this, as there are no dentists that are educated enough to even consider I could have infections in my bones, and the closest possible holistic dentist is a 4 hour drive each way for me - not something I can't do right now. There are no Biological dentists within driving range for me. So, my plan is to get these infections under control again, then use the herbal options to deal with things to heal and help my bones.

So, you need the infection cleared/clearing when they do the CT scan? If so, I would recommend the abx first, as they are known to work more quickly in many cases.

One thing you can do right away is start swishing a 1/4 tsp of Xylitol in your mouth several times daily for 10-20 minutes. You can spit this but its ok if you swallow some.

Swallowing more than 1/4 tsp per day can give you a mild case of the runs. Once tolerance is built this stops.

Its targets bacteria and biofilm no matter where it goes but you are focusing on your mouth infection first from what I understand.

It is ok if you have mouth sores as it can be used externally in wounds.

ten pass ozone-https://www.youtube.com/watch?v=iLSrFttROMU

Trialbylyme-hit this hard and throw every punch. Ten pass really helped me.

A naturalpath made some homeopathics for me.

Check out craigs list for sauna-sometimes they are cheap..

I bet you cure lyme once you cure this jaw infections

Go read a FB group called cypress or bust

I would also try IV antibiotics and/or long term oral

Post Edited (magoo2) : 5/7/2017 5:58:55 PM (GMT-6)

TrialbyLyme said...
@Traveler- Thank you for the info. I am really sorry to hear about your teeth issues. It's strange isn't it? I really wish you could get to a good dentist but it sounds like you have it under control. I didn't know Lyme could get into bones? I am approaching my 2 year DX mark and still feel like I know very little. Maybe I am still in denial, LOL. My question was if I started the doxy would that somehow diminish signs of infection on the CT scan? I started on my herbs a week ago but am antsy to start the doxy. But now it's only about a week away so I guess I can wait.

Unfortunately, I am being held hostage to what the practitioners around me know - and don't know. I can't even get tests run for things without explaining I have Lyme and am doing my own treatment and need it done to check on things (I've tried before) and with the first mention of Lyme, I get "the look", the disbelief, and them telling me that Lyme isn't that bad, or that it's not in our area. Those arguments get old quick.

I can't say that I really do have the bone issues under control, because I can't get xrays/CT scans or anything else to know, so I have to go by the amount of inflammation in my bones, and how much bone I'm loosing. But, I don't have a lot of choices in what to do or how to go about it - so like many, I do what I can.

I've been researching and learning about these infections since 1998, and my conclusion is that the more I learn, the more I realize how much more there is to know and understand!!! But, I keep plugging away at it because I really do need to know whatever I can learn to help heal myself, and to one day, hopefully, help others heal when I open my own business - but I have to get through school first. LOL. One thing at a time.

The Doxy and the herbs should help heal the infection in the bones, if they are at high enough doses and done for long enough.

Please do let us know what you find out at your appointment!!! And, of course, best of luck!

TBL - I agree with Pirouette - hit this hard and a.s.a.p. These are different infections than the Lyme and co's.

My husband had a staph or strep infection in his forearm...that was the size of a football within an hour...The ER dept gave him a few oral antibiotics.
I drew a line around it and in a couple hours it had spread a few inches outside the line.
He went to his Dr. the next morning...and the Dr. talked to him sternly - saying that this could be life-threatening...and he needed to get on IV abx a.s.a.p. so he wouldn't lose his arm. He sent him back to the hospital and also called ahead to tell the nurses that he needed daily IV abx for a week.
And...told my husband not to mess around with it. This could be life-threatening. (My husband said he didn't want to miss another day of work)



I'm not trying to scare you - and I don't know what type of infection you have ..or how bad it is - but I really want you to address this a.s.a.p.

Sometimes IV antibiotics are necessary.

I wrote a long post & it blipped out so I am going to make this short & to the point.

I did know someone up close & personal diagnosed with osteomyelitis, following an extracted tooth infection, rendering him completely incapacitated (through the bloodstream to his spine...). 1 month IV abx & several months oral abx.

He is now diagnosed with Alzheimer's & IMO, he needed (s) a longer continued course of abx+.

Do not wait, get strong abx going & immediate treatment!