posted
You've probably already tried a pain specialist?
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hshbmom
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posted
Yes, 4 so far...good ones too!
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Keebler
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posted
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Are you sure this is not from tendons pulling. Tendons can cause some very, very deep pain. Serious vitamin deficiencies can also cause some deep pain.
I don't think pain specialists are that good at searching for the source. They usually like to cover it up.
I think you do need to get it checked out, though. I just don't know what kind of specialist would look for whatever the cause is - across the board. An oncologist would be looking only for cancer. You need a broader spectrum investigation.
posted
Have you had a bone scan? If so, what were the results?
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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lymeloco
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posted
Have you had your thyroid checked? When your thyroid is out of whack, it can draw calcium from your bones. Have you had a bone density test?
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hshbmom
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posted
No, no bone scan.
Low thyroid, adrenals, B12, etc...
Need to request some kind of bone scan..."another crazy person thinks they have Lyme and wants expensive tests...NO!"
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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If you are experiencing bone pain that cannot be explained then I would think requesting a bone scan would be quite reasonable on your part.
I have one scheduled for next Tuesday and it was ordered by my PCP due to some bone marrow abnormalities that showed up on a recent PET Scan.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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hshbmom
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posted
Good suggestion Bulldog.
Keebler, I don't know if this pain is due to tendon problems, but it doesn't seem like it. Seems like just a bone problem, in addition to muscles and joints.
An orthopedist or rheumatologist might be able to assess the cause of the pain.
Is a bone scan the same as a bone density test?
Does Bartonella cause bone pain?
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posted
No, a bone scan is a nuclear medicine test that looks for "hotspots" or abnormalities of the bone and/or marrow. A bone density test measures the density of your bones and can assess for possible calcium deficiencies and osteoporosis.
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
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nenet
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Member # 13174
posted
Hi hshbmom,
I get this pain too, have for years. Usually it is in my left shin bone, sometimes the right one, right in the center of the bone, halfway between knee and ankle.
Sometimes I will get it in my forearm bones as well.
I was tested for Calcium, Vit D, etc. along with hormones, thyroid, by my endocrinologist a few years ago, before I got my Lyme Dx. The test only showed low Vit D, so she put me on 50,000 IU once per week.
That actually INCREASED my bone pain exponentially. It was absolutely unbearable, so I looked up side effects and sure enough high dose synthetic Vit D can cause bone pain as a side effect. She told me to switch to OTC Vit D and take that instead.
Now I just take Cod Liver Oil since it contains the proper D3 kind, just like you would get from the sun.
As for the bone pain, it comes back generally when my Lyme flares badly, or if I do too much. Even lifting 2 lb weights on each arm 10 times one day, the next day my left forearm was in intense pain, just the bone part.
It is a deep yet sudden and sharp, breathtaking, weird ache, and it radiates from the center of the bone (seemingly), and comes and goes. I feel like it's impossible to describe the pain well (or any pain really), but I did my best. Hope it made sense. Each person experiences pain a little differently.
I also get all over body-wide tendon and joint pain, nerve pain, and muscle pain - so I am very familiar with how each one feels. Wow, I try not to think about all my pains because it is overwhelming if I do.
One thing I seem to remember back when I was looking for any possible Lyme or coinfection cause, was searching the Lymenet archives I ran across a mention of Bartonella being a cause of bone pain, especially in the long leg bones, or shins.
What strikes me most of all is that when I DO get bone pain, it is almost always on the left side, and is almost always in the long bones (a few times it has been in upper thigh bone, or upper arm bone, but very rarely in comparison).
I haven't explored it further as with treatment it has decreased in frequency greatly. Now maybe once amonth or less.
I can't say what it might be in your case, but just wanted you to know someone else gets similar pain. It is pretty terrible.
hi! i'm so sorry to read this. in all the time we've communicated (usually about our kids) -- i don't know of your status with tbd's. are you treating for them?
i just am throwing into the ring that leptospirosis (another spirochetal disease) has deep bone pain as a main symptom.
also, in my treatment of lyme, i had it as a result of certain treatments as they apparently reached the organisms there.
have you considered this? maybe i missed something and if so, i'm sorry.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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hshbmom
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posted
Lyme, Bartonella, Mycoplasma, & ????
Need tested for Lepto, never considered it.
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Carol in PA
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I'm thinking there may be something in there that would help your daughter.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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hshbmom
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posted
Carol, those are very helpful links! Thank you.
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Keebler
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posted
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Mo's suggestion to consider leptospirosis (another spirochetal disease) is a good idea. It would be best to ask your LLMD, however, since most doctors think this is just from South America or Africa.
Not so, though. Swimming in water ways used by animals can increase the risk. Many of use have done that at one time or another.
hshbmom
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posted
Do the standard labs have good tests for these infections?
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Keebler
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posted
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No. Sadly, not at all. That is why I think you need a particularly wise LLMD to guide you. If you have no way to do that, we can come up with labs for you. I've very tired now so have to stop.
I will try to find more for you about leptospirosis testing. You could contact Igenex, too, and ask for their thoughts.
I have read a great deal about it and it is something to certainly consider. One herb that might help and I certainly have less pain since being on it, is andrographis. If you want more about that, PM me as I have a ton of research collected.
Leptospirosis is not addressed here, but other chronic stealth infections are, as with labs for Cpn or mycoplasma and HHV-6:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
=========
After reading all this, you might still ask for bone scans, etc. to rule out other things this might be. If only going for pain relief, an oncologist would deal only with cancer treatment and the pain meds used with that are very hard on the liver.
posted
Oncologists mainly treat cancer and are typically hematologists who treat all sorts of blood disorders. There is some overlap between rheumatology on bone pain issues and endocrinology.
Rheumatology deals with clinical problems involving joints, soft tissues and conditions of connective tissues whereas the endocrinologist deals with the hormones responsible for bone growth. If you have osteoporosis either doctor can treat it.
Have you had all of your hormones tested? Lyme and fiends do mess those up. Being deficient in thryoid, adrenal and growth hormone over a number of years leads to osteoporosis (which causes bone pain.)
Kind of a strange phenomenon for a disease that "doesn't exist in a chronic form" and is "easily cured" with 2-4 weeks of Abx.
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hshbmom
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posted
I'd like to avoid a rheumatologist, but would like to expose the damage this complex has inflicted.
I could ask the LLMD to order these labs and procedures.
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Have you ever tried boneset? Stephen Buhner says it helps with bone pain. He writes about it in his chapter on babesia, but it is also mentioned in connection with bartonella.
If this is of interest: He recommends 2-4 cups of warm (not hot) boneset tea each day (this is the easiest way to do it). If you don't like the taste of the boneset, you can infuse with a more pleasant-tasting tea at the same time (I used to mix it with Triple Leaf Detox for my husband).
We got our boneset tea from zooscape.com (strange name, but shipped reliably!).
Hope you find some relief soon! Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
i have huge pain issues- have justed posted mine last wk i think
but, can say in having MRI done showed several small cysts and lytic bone lesions to tibia and femur both near the L knee itself which is the main pain area that started 3 yrs ago. now is everyday, all the time.
then bone scan was done due to MRI findings as well as plain xray in ortho office- wanted to rule out bone cancer
bone scan showed increased uptake to l knee area as well as lumbar spine- have spine issue to lumbar and cervial with disc buldging, pinced nerves, annular tear and narrowing of space nerves leave out of.
with all this said- just within the last month found pain doc WILLING to tx the pain, meds only seem to really help on sundays. then start iv's again on monday and the cycle continues
curretly on lots of meds, some for neuro pain, muscles, joint, muscle.
now added methadone 5 mg (posted 10 mg in error is 10 daily but 5 twice dialy, i swear on phone nurse said 10 but rx was 5?) doesnt give full relielf but have to take what i can get or would not be able to get up out of bed.
i think pain is poorly understood in this disease process. pain doc is 5 hr away, long drive. i have given up on not trying to take meds, cant function or handle the pain without.
still use everything else daily as well, meditaion, prayer, distraction of all kinds, heat, water, you name it- mind over matter can only get me so far and is not near far enough
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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hshbmom
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posted
Update: Severe pain and stiffness in hips, knees, and ankles & had to have help getting out of bed
Step 1.
-already an established patient with an orthopedist, therefore...
-will see the orthopedist tomorrow, who will x-ray, then proceed from there.
-will ask for a bone density test and bone scan due to the severe pain
I'd like the ortho to find any problems and document them. I'll get as many tests from the ortho as possible.
Viva, I've never tried of heard of boneset until this thread.
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hshbmom
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posted
Update: The orthopedist took several x-rays (normal) and ordered a DEXA scan, which is a bone density test using a central device. This is to get a baseline reading.
The orthopedist also wrote a Rx for pool therapy, 2 times a week for 3 weeks. If there's no response to the pool therapy he is willing to order a bone scan if the pain continues.
The ortho thinks this is probably a Lyme-related problem.
Dual energy X-ray absorptiometry (DEXA) scans measure the bone density at your hip or spine. This test offers very precise results and is the preferred test for diagnosing osteoporosis.
During this test, you lie on a padded platform for a few minutes while an imager -- a mechanical arm-like device -- passes over your body. It won't touch you.
The test does, however, emit radiation, though your exposure during a bone density test is commonly about one-tenth of the amount emitted during a chest X-ray. This test usually takes five to 10 minutes to complete
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bettyg
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posted
mom, thanks for update on you; been wandering.
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hshbmom
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posted
I did some research on the Mayo Clinic website on ostomyelitis and osteomalacia.
I plan to request a bone scan. I have many of the causes and predisposing factors for osteomyelitis and osteomalacia.
I feel the orthopedist will order the bone scan...especially when the rheumatologist appointment isn't until September.
Here's the list of factors to support my request for a bone scan and links to information about the conditions:
1. increased risk of infections--people who have a central lines
I have a port which has not been functioning properly and is scheduled to be removed April 14.
I also have been Dx with Bartonellosis and Borelliosis, which are infections associated with osteomyelitis.
I'm immune compromised.
2. Poor circulation--people with poor circulation include those with peripheral arterial disease.
I have vasculitis and hypercoagulation associated with this chronic illness. Vasculitis can be caused by the Lyme bacterium. symptoms: swelling arms, legs, face, and neck
3. Orthopedic surgery--surgery to repair broken bones
Surgery history: 1. hip surgery of right hip 2. hip surgery of left hip The hardware is still in place from these surgeries. 3. recent (Dec. 2008) wisdom teeth removal!
When to Seek Medical Advice for Osteomyelitis:
...worsening bone pain along with signs and symptoms of an infection, such as fever and chills. If you're at risk of infection because of a medical condition or recent surgery or injury, see your doctor right away if you notice signs and symptoms of an infection.
worsening bone pain ...There has been a significant increase in the severity of the bone pain since surgery to remove wisdom teeth.
1. Celiac sprue. In this autoimmune disorder, the lining of your small intestine is damaged by consuming foods containing gluten, a protein found in wheat, barley and rye. A damaged intestinal lining doesn't absorb nutrients, such as vitamin D, as well as a healthy one does.
I have multiple symptoms of celiac disease...such as intolerance to gluten. This can cause a Vit D deficiency.
2. Chronic pancreatitis. This refers to long-standing inflammation of your pancreas, an organ that produces digestive enzymes and hormones. If your pancreas is inflamed, enzymes responsible for breaking down food and releasing nutrients don't flow as freely into your intestines.
I've been dealing with chronic generalized abdominal pain, nausea and vomiting, and constipation. No physician has been curious enough to find the cause of these symptoms. I finally got a referral to a gastroenterologist and will have several GI tests in April.
3. Medication.
I use anti-seizure medicine, Lamictal. Is this drug associated with osteomalacia?
When to Seek Medical Help for Osteomalacia:
1. It's important to seek medical advice anytime you experience chronic bone pain or muscle weakness, which may indicate osteomalacia or another bone disorder.
I've had chronic bone pain AND muscle weakness. The bone pain has become more severe since Dec. 2008, when my wisdom teeth were removed! It's only got so bad recently that I've required help to get out of bed.
2. Vitamin D deficiency can lead to low blood-calcium levels, which can be serious. Call your doctor if you have any of the following signs and symptoms:
Seizures I've had a seizure-like movement disorder since May 2006 and take anti-seizure medication, Lamictal
Numbness around your mouth or in your arms and legs
Spasms in your hands or feet
Irregular heartbeat (tachycardia) I have episodes of tachycardia that come and go. This symptom was observed in the office by the pain doctor.
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Carol in PA
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Hshbmom, How is your daughter faring?
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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hshbmom
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posted
Hi Carol,
Thanks for asking, but she's not doing any better. She had a bunch of GI tests last week; nothing showed up except for an enlarged spleen, and a small pancreas. ...lots of chills & sweats, intense bone, muscle and joint pain, a lot of abdominal pain, and sluggish guts.
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Carol in PA
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Hshbmom, Ask kelmo about her daughter, who is using a Thermotex far-infrared pad for pain.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Rev Med Interne. 2009 Mar 18; [Epub ahead of print] [Cat scratch disease with bone involvement: A case report and literature review.]
[Article in French]
Roubaud-Baudron C, Fortineau N, Goujard C, Le Bras P, Lambotte O.
Service de medecine interne, CHU de Bicetre, 78, rue du General-Leclerc, 94275 Le Kremlin-Bicetre, France.
INTRODUCTION: Cat scratch disease is an infectious disease caused by Bartonella henselae. Most of the patients present with a lymphadenopathy associated with a local infection at the site of the cat scratch. Disseminated infection is uncommon.
CASE REPORT: We report an immunocompetent 61-year-old woman who presented with a systemic cat scratch disease including a multifocal osteomyelitis. Diagnosis was confirmed by PCR on the adenopathy. A literature review identified 51 other cases of osteomyelitis associated with cat scratch disease, 14 of those confirmed by PCR.
CONCLUSION: Bone involvement in cat scratch disease is rare, especially in adults. The diagnosis should be suspected on the basis of patient questioning. The antibiotherapy and the place of surgery are discussed.
PMID: 19303175 [PubMed - as supplied by publisher]
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