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sophiagg
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/1/2010 8:16 PM (GMT -6)   
does anyone else have major bone pain.... i get t in my legs and arms alot and don't really know how to describe it to people.... any one know how i feel...??? anyone???

Post Edited By Moderator (Traveler) : 8/8/2016 9:26:35 AM (GMT-6)


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/1/2010 9:16 PM (GMT -6)   
May I ask, do you have Lyme disease? Have you been diagnosed with it, and if so, how long ago? What is your treatment protocol at this time?

If you have Lyme disease, yes, lots of people have bone pain in their legs, arms and many other parts of their bodies. Does your pain feel like arthritis pain? This is quite common for those of us who have Lyme disease.

Sorry to hear of your suffering. Tell us a little more about yourself and I'm sure others will come along and offer their input as well.

Gary

sophiagg
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/1/2010 9:45 PM (GMT -6)   

Yes I have had Lyme for 4 years and I have had JRA for 16 so I know arthritis pain! Lol this is different it is bone pain but I don’t know quite how to describe it... I have been on oral antibiotics for 4 years and IVIG infusions this past year and next week I am starting 2 IV antibiotics... so that’s my story in like 2 sentences... lol


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4389
   Posted 5/1/2010 9:58 PM (GMT -6)   
I think IVIG can cause bone pain...you might ask your doctor or pharmacist if this could be a side-effect...

Also, I've experienced bone pain from osteoporosis - inactivity caused by being ill, malabsorption from Lyme, and some medications used to treat autoimmune diseases (esp. Prednisone) can cause osteoporosis. You might want to talk to your doctor about a bone density test (DEXA scan). The thing that helped with the bone pain from osteoporosis for me was getting a prescription for Miacalcin Nasal (osteoporosis medication) and taking enough calcium and vitamin D.

I hope this helps...take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


sophiagg
New Member


Date Joined May 2010
Total Posts : 3
   Posted 5/1/2010 10:42 PM (GMT -6)   
Thanks... I have had bone pain for years so I know it’s not the IVIG... I mean I am used to living with pain have all my life so I am not really looking for any more pills... ii have plenty lol ... I just don’t know how do describe it to people....

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4389
   Posted 5/2/2010 12:01 AM (GMT -6)   
For me, the bone pain felt like a deep pressing ache...but yeah, it can be hard to describe, especially to someone who's never experienced it...

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 5/5/2010 1:52 PM (GMT -6)   
sophiagg, I had low vit D level and my bone pain improved once I got my level above 50.
KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 5/6/2010 4:46 PM (GMT -6)   
i had serious attack on my knee and shoulder, that restricted movement of both those joints, but that time i was not even diagonsed with lyme.

since i started lyme treatment my pain has only got better, shoulder never got attacked, but knee pain persists, however, with 15+ days of knee massage and physical therapy, i am able to sit/walk/climb steps without difficulty.
jogging and running is still out of the question.

now i am off medicines, and i seem to have knee pain back. looks like i need to get back on medicines.
to describe my bone pain, it was just massive inflammation around knee and it'd hurt to even move the knee a little bit. for the longest time i couldn't even figure out where the pain was coming from, until i pressed along all parts and found what hurt the most. the pain is all comprehensive, sometimes small joints in knee hurt.

dawnhass
New Member


Date Joined Aug 2013
Total Posts : 3
   Posted 8/6/2013 6:56 PM (GMT -6)   
I'm waiting for my Lyme Disease test to come back this week. I had the Ingenex test which is suppose to be more accurate.

In the meantime, my dr. put me on Doxycilin (sp?)...its been 3 weeks.
I'm in more pain than I was before. The pain my in arms is unbearable at night.
I take vicodin and muscle relaxers to get to sleep. I wake up around 2 a.m. in so much pain.
last night I cried it hurt so bad.
People have no idea unless they experience this pain.
I was glad to see that other people have had similar symptoms, now I don't feel like I'm alone.

Someone mentioned that the tendon is affected and said they take ABX? What is ABX?
I feel like my tendon in my right arm is very bad and the pain along my bones and in the joints hurt so badly.

One more thing to consider, I had Lyme Disease in 2011- 6 mo. after I had high blood pressure in the 7 mo. I had a hypothyroidism. I experienced a variety of maladies, but only pointing out the big ones...by month 14 my adrenal glands stopped working...then the joint pain began in March 2013. Its becoming progressively worse. Being on Doxy, my dr. said I may get worse before I get better. If that test comes back negative this week, I'll go to an endocrine dr. But, still feel I have LYME.
I found this article very interesting...hope this helps someone http://www.wellsphere.com/lyme-disease-article/treating-the-thyroid-and-adrenal-glands-in-lyme-disease/407807


I'd appreciate a response on ABX and any other suggestions.

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3576
   Posted 8/6/2013 7:57 PM (GMT -6)   
Hi Dawn,

Oh man - I hear you. I'm sorry you are going through this. It very well sounds like Lyme - especially if you were not treated correctly in 2011. I was not treated correctly and it shows. Also, hypothyroidism and adrenal problems are common with lyme as well. 3 weeks of doxycycline will not be enough. I would strongly recommend you read our " New to Lyme, Start here" thread at the top of the Lyme page. I n addition I would recommend seeking out an IlADS trained dr which you can do on this site. Many of these drs are underground so we ask not to post names. You can email me or put a thread out "Looking for LLMD in _____ ___" Best of luck to you - this is a good site for all kinds of symptom and treatment advice - conventional and alternative.

It does get better!
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
July 2013 - Weaning off of antibiotic treatment

Feel free to click on my name and shoot me an email. I have referrals for DE, PA, and NJ areas.

Healing98
Veteran Member


Date Joined Jul 2013
Total Posts : 1196
   Posted 8/7/2013 3:11 PM (GMT -6)   
Sophiagg, my description of the bone pain due to Lyme disease is that it felt as if i got hit with a mallet on my arm. It was not a sharp pain (localized to one tiny spot, like a pinch) but it was not a dull pain either where it covered a large area and you can't tell where it is coming from. Fortunately for me, the pain has gone away after being on antibiotics for three weeks. that and the eye problems I had are the only things that I have noticed that have gotten better with the antibiotics.

I will agree with those who mentioned vitamin D levels. I too tested low on vitamin D and have been spending more time in the sun, so maybe the vitamin D was the problem? I have read that low magnesium, which most of us suffer from can cause these pains.

dawnhass
New Member


Date Joined Aug 2013
Total Posts : 3
   Posted 8/7/2013 4:55 PM (GMT -6)   
Thank you. I have found and IlADS dr. just waiting for this igenex test to come back...seems like forever.

My pain is so intense...I can see why people want to end their life.
I do appreciate you saying it gets better. I really hope so.

People have no idea how painful this is.

MarieLS
Forum Moderator


Date Joined Dec 2012
Total Posts : 2690
   Posted 8/8/2013 5:57 AM (GMT -6)   

dawnhas,

The bone pain is a very hard pain to endure... I describe it a severe growing pains. Had them the whole time I've been sick.

I tried all kinds of painmedication, but not one seem to help, I have to sit it out... Heating pads sometimes give some kind of relief, but not much, but it helps to get the sharp edges off. I noticed though that moving around is better than sitting down when 'it' is attacking, although that the first reaction is to go and sit down...

My vitamin D is extremely high, so that doesn't work for me...

 
Lyme & Bartonella. Sick for about 19 years (34 now). Started treatment August 2012 with abx (ILADS protocol, different combinations) + Buhner's Core Protocol. Leaky gut, heavy metals, EBV, XMRV, erythema nodosum, Hodgkin's Lymphoma at 15, Lyme arthritis, many neurological symptoms, food allergies/intolerances, histamine/chemical intolerance and much more.

TICKLEDPINK
Veteran Member


Date Joined Jul 2012
Total Posts : 914
   Posted 8/8/2013 8:55 AM (GMT -6)   
The bone pain is impossible to describe unless you've experienced it.

My feet felt as if someone had smashed every bone in them and then put the bones back together in the wrong order............if that makes sense.

Painkillers at that point were useless,I could have just as well have been swallowing tictacs.

The only thing that really worked for me was Boswellia and Turmeric, 3 capsules 3 times a day.

The pain does get better with treatment but it takes a very long time.

Tickled

hope4best2012
New Member


Date Joined Aug 2012
Total Posts : 3
   Posted 8/12/2013 5:08 PM (GMT -6)   
sophiagg, the bone pain you describe sounds like Bartonella to me. I know what bone pain feels like for sure... extreme shin bone pain for me especially...
Diagnosed with Lyme, Bartonella, and Babesiosis. Still treating...

dawnhass
New Member


Date Joined Aug 2013
Total Posts : 3
   Posted 8/29/2013 9:09 PM (GMT -6)   
Ok so I got the Igenex test back and I'm positive for Lyme, Babesios and bartonella. Can anyone tell me if this protocol worked for you? The lyme dr. put me on Dr. Zhang's pills
Arthral EZ
Allicin
chlorophyll
circulation P
Artesumate
Plus, A-Inflamm drops - I think these help alot.
And she put me on an oral antibiotic.
I'm still taking Ibuprophen, vicodin and muscle relaxers to get thru the night with many sleepless nights.

Let me know if anyone of you have been treated with these and the results.
I still have lots of pain. I have noticed a few little (ever so slight) differences...

sunny_1
Regular Member


Date Joined Aug 2013
Total Posts : 73
   Posted 8/30/2013 10:10 AM (GMT -6)   
Interesting to hear others use the same description I have used to tell my husband. By the end of the day, I feel like someone beat my entire body with hammers.

It's not constant for me, but it does creep in, and increases tenfold with overexertion.

PennyDuff
New Member


Date Joined Apr 2016
Total Posts : 2
   Posted 4/17/2016 12:20 AM (GMT -6)   
I have had Lyme since 1996. I've dealt with pain in my tibias off and on (more on than off) since that time. It has spread to my arms and facial bones in the last couple of years. The lyme, otherwise, has stayed at a very low level and generallly "behaved" itself, but the bone pain never seems to go away. If someone touches my tibias, I scream, because it HURTS! It seems like if you tell a physician about the pain and not to touch the area, they seem to have a compulsion to touch it, and not gently! I've never found anything but pain medication to deal with it. NSAIDS and other OTC pain medications are rather like shooting an elephant with a BB gun. I can go months without pain in my tibias, too. During those times, I do not take pain meds.

PennyDuff
New Member


Date Joined Apr 2016
Total Posts : 2
   Posted 4/17/2016 12:24 AM (GMT -6)   
Let me add to the note above. I went to an ILADS conference several years ago, and felt very vindicated when I heard the shin pain described as a specific and characteristic symptom of Lyme, and a very common one that physicians treating Lyme frequently were used to seeing. If your physician is not used to seeing this symptom, s/he is new to Lyme. Have him or her talk to some seasoned Lyme physicians.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 4033
   Posted 4/17/2016 1:00 AM (GMT -6)   
Hi PennyDuff!
Glad you found the forum. It's pretty late tonight so I would expect a forum moderator to come along tomorrow to officially welcome you and provide some important info. They are a great resource.

But I wanted to say hi. This is an old thread - you may not have noticed the date. But it's an interesting topic. I was always confused by the term "bone pain" because I didn't understand how you could feel pain in your bone.... UNTIL I DID! Wow. that is pain... I get these pains in my shins mostly, sometimes my arms. It is very difficult to describe but it is like a "catch my breath/bring me to my knees" kind of pain. For now, it's intermittent so I'm grateful.

I get it more in my right shin and that also happens to be where I have a very very strange lesion/rash looking thing. It is typically oval-shaped and I get them on my lower back right above my butt and just below my bra line on my back and I have one on my abdomen and just below my knee. But on my shin where I get the bone pain I have a weird large splotchy splotch like it was a paint splatter. So strange but I've always wondered if it's associated w/ the bone pain. My LLMD & I think the lesions are bart and they are now fading since I started vanco this month.

I don't take anything for the pain because I can't tolerate the side effects that come w/ pain killers but it's also not a constant pain like the joint pain. Hope you find some relief.

But I didn't realize it was common - interesting to know.

-p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 13537
   Posted 4/17/2016 1:21 AM (GMT -6)   
Welcome to our community, PennyDuff!

I am glad you found us. This forum is great for support and knowledge...

Are you still in treatment for Lyme disease?
Did you ever treat the co-infection Bartonella?

I have read that shin pain is also a symptom of Bart.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.

nberg
Regular Member


Date Joined Mar 2016
Total Posts : 131
   Posted 4/17/2016 2:23 AM (GMT -6)   
Pirouette. You have lesions on your shins? I also have spots on my skin almost directly in the middle of my shin it is about a inch long and about quarter Inc wide and oval looking. It is sometimes red and other days is faded to almost skin color. Is this how yours are? I have wondered if it was due to the Bartonella as that is the side I have foot pain and shin pain on.

Nick

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 4033
   Posted 4/17/2016 1:23 PM (GMT -6)   
nberg -

Yes, on my right shin (which is the leg where I get most of my bone pain) is where I have a splotchy dark red like lesion - it used to be about a 2" x 1/2" area but once I started vanco for bart it grew to about 4 times that big and a new, very oval lesion appeared right below my knee. I've been on the vanco for 3+ wks now and all lesions have faded. They literally appear overnight.

They are kind of a dark red and don't itch or hurt. The skin looks like teeny tiny little bumps clumped together and the skin looks a little dry but no flaking or scabbing. I've tried looking online for anything similar and I have yet to find anyone or any photos of lesions that look like this. Mine don't really fade in/out like yours. They come, stay for a couple of months and then all of a sudden start fading away. Then a new one will pop up someplace else.

LLMD and I are pretty sure it's one of those weird bart sx.

-p
Chronic late-stage lyme—likely infected in 2000; Clinically dx 3/2014 w/ Babesia, tested positive for Bartonella, CDC-positive for Borellia. Multiple viruses and GI/immune treated first; started AL-Complex in May; started A-Bart and A-Bab in July; have IV port installed and started on Rosephin.
Detox: Pinella, Burbur, Parsley, Milk thistle seed, Burdock root tinctures; japanese knotwee

rowingmom
Veteran Member


Date Joined Dec 2011
Total Posts : 1626
   Posted 4/17/2016 2:12 PM (GMT -6)   
Long bone pain, especially in the shins and forearms is caused by bartonella. The bacteria infect bone marrow as well as endothelial tissues.

Bone pain was one of K's more significant symptoms which resolved with bartonella treatment. She also had skull pain.
13 yo daughter:
2010 - Dx ADHD, Tourette’s, Aspergers, motor delay, PANS/PANDAS
June 2011 - Igenex PCR positive bartonella, IND lyme. CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, herbals/homeopathics
April 2013 - ANA titers negative. Weaned abx. Start Buhner bartonella protocol, methylation/detox protocols, organic PerfectHealthDiet gf/cf/sf. Minimize EMF exposure
Nov 2013 – Clinical babesia diagnosis. Start Buhner babesia protocol
Sept 2014 – Symptoms 99% resolved

blueberrymuffin
Veteran Member


Date Joined Mar 2016
Total Posts : 695
   Posted 4/17/2016 6:48 PM (GMT -6)   
Can Bart bone pain also be in the bones of the ankle?
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