Topic: Which Infection Causes "Break-Bone" Pain in the Large Bones?
GretaM
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posted
Been bugging me for a while now.
Notice it most at night when I try to lay down.
The bones in my legs hips shoulders feel like I've had a bat taken to them.
Deep deep bone pain.
Not muscle not nerve related.
Which infection causes this deep, marrow-like bone pain?
Please please do not suggest magnesium. I cannot fit any more magnesium into my supplement schedule.
Thank you.
Does anyone else have this pain?
[ 10-23-2014, 01:01 AM: Message edited by: GretaM ]
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map1131
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I've always called that Bart. He(Steve won't like that) is the deep bone, especially long bones in arms and legs attacker.
Is your mag timed released and throughout the day?
The only way I found to get the day to day pain deep in the bone to let up...was finally finding Bart rife frequencies that stirred him up.
When I tried to attack Bart again in '10 with abx, the deep bone pain came back from hits from abx like rifampin and levaquin.
I spent a better part of a year trying with abx. Finally realized it's truly not for me. Rfie freq 357 & 832 are knocking him down!!!!!!!!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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ukcarry
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posted
Lead causes deep bone pain, Greta.
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Pocono Lyme
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I thought I had this as I would be awakened by bone pain in addition to day time bone pain. My calcium levels were also running high.
Since stopping Vit D3, no more bone pain. My latest calcium level is within normal range. I will have it checked again though as it can fluctuate with hyperparathyroidism.
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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LisaK
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I have had this for about a year or so. Befor antibiotics it got so bad I felt like my bones were rotting away. I did find some very good info on it...... somewhere.....
I will try and remember and post it Greta.
I don't think the mag helps it from what I remember. and I notice it hurts more when I eat calcium or take calcium suppliments.
I have found no dr that knows what I was describing to them....yet
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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posted
bone pain is associated with bart and lyme. BUT, we must consider that these all seem to have overlapping similar symptoms, right?
From my experience:
before I had known I have tick diseases my bone pain got so bad. I went on bactrim and azithro together and I don't recall having any bone pain during that time of about 3 months
I have taken myself off of those 2 antbiotics as I think they were the culprits of my extreme GI upset and low energy issues.
I am now back on doxy for about a week now and the bone pain came back yesterday.
so, herx? who knows. maybe.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
I've had severe bone pain through treatment. I believe it's bart and lyme. I get it whenever I herx really bad, and it can last for months. It's awful, deep pain that's extremely hard to find relief from. No mag or diet or supplements ever helped, nor enough advil to kill a horse.
My new LLMD put me on a pain mgmt program of cymbalta and a low dose amitriptyline, and finally, my pain is at a manageable level. It's made an enormous difference. I was told when pain is so bad for so long, your body can't work to repair anything else that's wrong. So lessening the pain really is necessary to healing.
posted
We all have an opinion on this one. I think it's mold. I have it too. When I am on that nasal treatment for the mold colony it gets really bad. I've had this all along..,
I was treating everything for a long time, had been on abx (aggressive) for 3 1/2 years when I started that treatment. I should also add that I did a big remediation a couple of years ago on my house.
But really, who knows...
Posts: 845 | From Northeast | Registered: May 2011
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Still haven't found the exact one I'm looking for.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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GretaM
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posted
Haha. Map. Yes, I call Bart a man also, just casue Bart is a man's name.
Sorry, Steve.
Babesia is a woman, though... "Babs".
The pain is so bad for me currently. I was awake all night.
Can't lay on my sides cause the pressure on my hips is like a drill into the bone.
The knees can't touch each other. My shoulder blades are agony.
I was in and out of reality all night, pretty sure I was hallucinating from the pain.
I'm on LDN for my immune system so I can't use any of the Heavies. (Narc. pain pills).
Cried so much now my nose won't stop bleeding.
Maybe the cats take the bats to me while I doze off...haha. I did change their food...
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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gmb
Unregistered
posted
I too thought I read where deep muscle and bone pain think babs.
And for skin surface tingling, muscle twitches, and other neuro stuff think bart.
Forgot where I read that... and my brain fog and memory sx must be from?? duh... I forget.
map1131
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posted
gmb, One of the 3 B's, that's funny.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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nefferdun
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posted
That is awful Greta. Bart gave me shin bone pain. It inflames the lining over the bones - periostitis. I have lumps along my shin bones because of it.
For me, babesia affected my large muscles like the upper thighs, buttocks and back.
PR can also cause bone pain.
When I got tendonitis from Levaquin, I had to sleep (or at least try to) sitting up. When I was flat on my back, it did something to my circulation that made it hurt like crazy.
I took methionine and that helped. In fact it was the only thing that stopped it (went on for over 5 months). I just found this:
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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LisaK
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aw, I am so sorry greta! I have that pain for 10 minutes and I feel like I am going to jump off a building if it didn't stop!
I feel so sorry for you for it to last as it does!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Kudzuslipper
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I'm sorry Greta. I (knock on wood ) have not had that for a while. I used to describe it like a headache in my bones! (Maybe even a gnome with claws)
In the years befor Lyme Dx.., it was always worse on prednisone which no one understood since pred is supposed to make all pain go away.
I suspect Bart or simply Lyme. I remember the chapter in cure unknown where her son would lie in the tub till the wall paper peeled cause it was the only lace he could get a respite from the pain.
Sometimes I think it helps to not worry what causes what and just stay the course...
How are you doing? Are you still on abx break? What's next?
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Razzle
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posted
Prednisone did not make my RSD pain go away...nor did it make other pains go away (Lyme/Bart/etc.) - if anything, Prednisone always made my legs hurt more.
Flagyl, things that kill Lyme & Bart - those things make the pain in my legs stop (or flare up, then stop - i.e., herxing).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I don't know what it is, Greta--I just wish that you didn't have it. Does glutathione help at all? I'm so sorry.
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GretaM
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posted
Well...
I have all of the above.
Check check check and check. Sigh.
I'm laughing so hard at myself I'm crying.
I just did an IV reduced glutathione drip, so I hope that helps tonight.
I am going to try down pillows under my hip bones to see if it helps tonight.
This isn't funny...but it is...you guys will understand.
Had a horrible night last night. Almost delirium with the pain and a terrible herx from restarting abx. Lucid lucid dreaming tossed and turned all night.
I have a white noise machine to help me sleep.
I had serious ringing in my ears. Could hear bangs thuds thumps screeches howls screams...
Just realized about an hour ago the screams and screeches and howls were from me, in pain.
The bangs thumps thuds were me tossing and turning and hitting the wall.
Haha.
Gosh knows what my neighbours think!
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Tincup
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Neff said.. "I have lumps along my shin bones because of it."
You are not alone. Bartonella quintana (not henslae) is also referred to as "shin bone fever". It was dubbed that when our soldiers were stuck in trenches for long periods of time and lice was shared amongst them. The lice passed on this strain of Bartonella.
I also get BAD shin splints as well as the lumps, and my bet is the Bartonella is involved. Did you know you can get shin splints on 4 sides of your legs? You can. And oh it's so nasty!! (Yes, I am complaining just remembering how it feels!)
Greta- dear- stop laughing so hard you cry. Just giggle a little!
I have to sleep on a water bed for the very reason you speak of, the pressure pain. I also have to use a pillow between my legs so my knees and ankles don't touch during the night.
And I keep a pillow along my chest for my arm to rest on so my arm doesn't touch my chest and cause more pain.
If the sheets are wrinkled I wake in pain from where they are wrinkled and touching me. Actually I use soft, soft, lightweight blankets under and over me now if I have to have one over me at all.
Princess & The Peas Syndrome is sometimes connected with fibromyalgia. Of course, I believe fibromyalgia is a set of Lyme/coinfection symptoms and not a separate entity.
Here is more info about it, along with the classic children's story.
And the deep hip pain could be a staff infection too. I've seen it with mold and staff. But then it could be many other things too. Just tossing that in the mix.
Tincup
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posted
I forgot what I planned to write, so will add it here now. What a ding-dong I am!
"Break-bone" pain you mentioned reminded me of break bone fever (a virus), also called dengue fever. It is transmitted mostly by mosquitoes and is typically found in warmer climates, such as the southeastern USA.
Don't know if that is a possibility, but thought I'd add it to the mix as a consideration.
GretaM
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posted
Haha! Tincup... Princess and the Pea... I can SO relate! If one side of a pillow is slightly higher than the other, my brain registers it as a boulder.
Before my lyme dx, I was considering Dengue, as I had gotten really ill after a trip to Cuba. The only issue is the fever part. Can't break 100, I'm afraid.
But Staph...you may have something there.... In my immediate family, everyone, I mean everyone, is either a regular Ol' staph carrier or has had MRSA.
Instead of Stephanie, it's Staphanie. ( )
Took me 5 hours to bear weight on my legs today. Pretty sure the cats had a river dance party on my spine last night.
Looked in the mirror for paw shaped bruises today...
I jest, but honestly, this bone pain is terrible.
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TNT
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GretaM,
I have been reading today about brucella. Bone pain is one of its symptoms.
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GretaM
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Thanks TNT.
Does it say what abx works on it? Maybe one of the ones I am on hits it and that is why I'm in agony. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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TNT
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GretaM,
Here are the links I was reading. It looks like Doxy. 100mg 2x daily and IV or IM Streptomycin is the best treatment, with maybe a third ABX for difficult and chronic cases.
Alternative or additional ABX are Rifampin, Bactrim, IV or IM Gentamycin. I thought I even saw mention of 3rd generation cephalosporins as additive ABX, but don't quote me on that.
GretaM
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Thanks TNT for the links. Much appreciated!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lymielauren28
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Bart. BART. One more time: Bart!!!!
For me, it was Bartonella, and like Map said, rifing had the biggest impact on that symptom. I would lay in bed at night and sob...it was that bad. Felt like someone was breaking the bones in my legs, top to bottom, over and over and over. Rifing 357 and 832 Bart frequencies on my (cheap!) rife machine took care of it.
I hope it passes for you soon Greta. I know well how awful it is.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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GretaM
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Hi Lauren,
Thanks for the tip!
Argh. 'Ol Bart. What a bleep he is. (Sorry Steve! Just cause Bart is a man's name!)
Well I don't have rife but I have a zapper. I am going to try that for fun.
Have nothing to lose but this pain.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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map1131
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Deep bone pain relief came when I went on the war path and after 7 yrs of ZERO abx....I started first with levaquin for a few months for Bart.
Herxed like he!!, but then the deep bone pain started getting better. I believe I did 3 mths.
Bone Pain came back shortly after. Okay, well it was on to rifampin. That was lovely too, intensified the bone pain at first then... aha Bart is playing dead again. Did 3 mths of it.
Stopped rifampin and bingo within weeks Bart is ticked off and running nutty in my body. Back on rifampin. Ok, got everything calmed down and I'm into 6 month.....
I go mentally psycho......literally thought I was loosing my mind. Mad as he!! at the world. I realize it's past time to stop rifampin.
It has mentally snapped something in me. Sure enough within weeks, here comes the bone pain again along with other Bart uglies.
It took me at least 6 mths to get over my mental breakdown. I was really scared that I had done something very harmful to myself by taking that rifampin. And I was most afraid it was permanent.
Even found some studies on rifampin that backed my mental breakdown from that abx. I detoxed, detoxed and did everything I could to get rifampin toxins out of my body.
That's when I finally found 357 & 832 frequencies. They are what finally got me relief.
But I can't do Bart freqs daily like it is suggested to eliminate this bad guy. I usually can't even handle once weekly of Bart freq, I do every 2 weeks.
My reaction is very strong. I did Bart session last week and to my surprise it halted a UTI that had gone on for 4-5 days. So Bart has joined the urinary tract party. Great, just great. Berberine was controlling UTI for over 6 mths and then???
I've had to do Bart rife session twice in the last 10 days. Not good. I'm not sure how to kill Bart without killing me in the process.
Greta, I so know that deep bone pain. I wish I could rife you from here lady. Try the zapper. Never know, it might help.
Go get 'em girl!!!!!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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GretaM
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I have a zapper. I am going to try the bart frequency program for it an see if it helps.
It has been better. But still there. More like sprained or bruised bones now-not crushed. Haha.
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LisaK
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someone mentioned staph above.
my new alternative llmd said I have to get rid of my strep before I can get rid of lyme or bart. I am in treatment for strep now.
strep and staph are related.
during this treatment, which lasts 18 days and I am midway, I have had very much aches and pains in my body including this bone pain.
Maybe it is related?
a variable to toss in I have been off all abx for 7 days now. So..... am I achy because of treatment (herx) or because I went off abx?
I must say though since I have finished my first 2 treatments which were for babs (#1) and tapeworm(#2), I feel way way better overall and have lost the "drunken lyme syndrome" I was getting from just a sip of beer that I have had for about 3 years prior!
which means I used to get drunk on one sip and have bed spins from 4oz. of alcohol with a hangover that started immediately after a full glass and lasted 24+ hours!
so where am I going with this?..... I think my treatments are working and I also think I am herxing from strep during current treatment, so POSSIBLY this bone pain is from strep?
I almost can't wait for my next 2 treatments of lyme and bart to see what happens!!! hahaha
Greta, I am STILL trying to remember what and where I read about all this bone pain (I found it by accident one day like all my really "good" information!)
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
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I just googled "staph and strep and bone pain" and this is what came up with lots of link that look interesteing.........
"Searches related to staph and strep and bone pain Osteomyelitis Inflammation of bone or bone marrow, usually due to infection
Skin infection A blanket term meaning "inflammation of the skin". there are several different types of dermatitis. the different kinds usually have in common an allergic reaction to specific allergens. ...
Bacteremia The presence of bacteria in the blood
Diabetes....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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map1131
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posted
My best rife sessions, meaning the rife that makes me feel better than anything is staph and strep freqs.
That has been the case for several years. I've done them on a routine schedule, like 3-4 days a week for a few months and think, ok I've killed you bad guys off.
No they just build their army again. So these two are part of my co-infections. I've tested very high for strep titers. My PCP it was probably from an old infection???
No, I told him, there's nothing old about it. It's there. I shared my staph & strep tx protocol.
We talked about doing a swab of nose and seeing if by chance we could get some staph. I keep forgetting to do this.
My deep bone pain continued long after I did the rife protocol for staph and strep. I did knock it down and out for sometime.
But who knows who's who. They are one big army of really bad bacteria and they have joined up to make them all stronger.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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GretaM
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posted
That is really interesting Lisa!
Hmmm... makes sense.
Pam, yes, the staph keeps returning on me as well, I am wondering if the sores on my chest that will not heal are staph.
Which would explain this bone pain.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I am going through the same thing right now, Greta, and thank you for asking the question. Lots of good responses. Maybe I have staph bc I have bumps that don't heal, too.
Call me crazy, but for sleep, I have to move around all night. I will rotate from bed to couch to guest bed. It is like shift sleep to keep my bones from "freezing up".
It sucks but it is the only way I get any sleep right now. I nap during day to compensate. Have terrible dreams, too, probably from the pain.
Sometimes i lie on top of my down comforter to give extra cushioning for my joints. That helps a lot.
-------------------- Amy
Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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posted
Map1131.. i think that's your name.. i'm wondering about what frequency was for Bartonella? I have a GB-4000 and have horrible deep bone pain as well. I saw you guys were talking about rifing for Strep and that helps with deep bone pain.. can you please tell me more about this??? please.. i'm in so much pain!!
quote:Originally posted by map1131: Deep bone pain relief came when I went on the war path and after 7 yrs of ZERO abx....I started first with levaquin for a few months for Bart.
Herxed like he!!, but then the deep bone pain started getting better. I believe I did 3 mths.
Bone Pain came back shortly after. Okay, well it was on to rifampin. That was lovely too, intensified the bone pain at first then... aha Bart is playing dead again. Did 3 mths of it.
Stopped rifampin and bingo within weeks Bart is ticked off and running nutty in my body. Back on rifampin. Ok, got everything calmed down and I'm into 6 month.....
I go mentally psycho......literally thought I was loosing my mind. Mad as he!! at the world. I realize it's past time to stop rifampin.
It has mentally snapped something in me. Sure enough within weeks, here comes the bone pain again along with other Bart uglies.
It took me at least 6 mths to get over my mental breakdown. I was really scared that I had done something very harmful to myself by taking that rifampin. And I was most afraid it was permanent.
Even found some studies on rifampin that backed my mental breakdown from that abx. I detoxed, detoxed and did everything I could to get rifampin toxins out of my body.
That's when I finally found 357 & 832 frequencies. They are what finally got me relief.
But I can't do Bart freqs daily like it is suggested to eliminate this bad guy. I usually can't even handle once weekly of Bart freq, I do every 2 weeks.
My reaction is very strong. I did Bart session last week and to my surprise it halted a UTI that had gone on for 4-5 days. So Bart has joined the urinary tract party. Great, just great. Berberine was controlling UTI for over 6 mths and then???
I've had to do Bart rife session twice in the last 10 days. Not good. I'm not sure how to kill Bart without killing me in the process.
Greta, I so know that deep bone pain. I wish I could rife you from here lady. Try the zapper. Never know, it might help.
Go get 'em girl!!!!!!!!
Pam
Posts: 120 | From nashville, TN | Registered: Nov 2008
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posted
Map1131:. i think that's your name.. i'm wondering about what frequency was for Bartonella? I have a GB-4000 and have horrible deep bone pain as well. I saw you guys were talking about rifing for Strep and that helps with deep bone pain.. can you please tell me more about this??? please.. i'm in so much pain!!
I would appreciate any new frequencies suggestions to try for deep bone pain.. please.. i'm at my wits end...
Posts: 120 | From nashville, TN | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Kudzuslipper
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Member # 31915
posted
I used to have this. It was always worse with prednisone. I used to describe it as a headache(migraine) in my bones.
I am not sure what got rid of it or what it was. But for now seems to be gone.
I did find that my hip pain (which often was sort of ground zero for this paint that then radiated out to all my limbs) is much better if I sleep with a pillow under my knees. Learned that trick when I had a broken ankle and had to keep my leg up... Ankle hurt like hell, but that position helped my hips. Silver lining
Feel better Greta!
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