posted
i have been having SEVERE pain in my leg bones for the past few years... not my joints... my actual bones... some days it is unbearable.
my symptoms have been improving with my new anti-biotics... but my bone pain isn't getting any better. even though i have some energy now, just walking a few minutes can make my bones hurt for DAYS. so i really can't use any of the energy i now have...
i'm just wondering if many other people here experience this, or if i could have something else going on...
i feel like if it wasn't for this symptom, i might be able to have somewhat of a life again, so if it's from another condition, i want to get it figured out!
p.s. i'm already taking vitamin d and magnesium, but it doesn't seem to be helping. exactly how much should i be taking?
thanks in advance!
Posts: 220 | From Kansas | Registered: Mar 2010
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I have spine pain, but it has gotten better with iv antibiotics. It was one of my most debilitating symptoms .
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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this is like a constant deep pain in my shins... sometimes femurs too. and it doesn't go away, even when i'm sitting down... it honestly feels like i must have cancer in my bones. i don't think i do, but it FEELS like there has to be something seriously wrong to be causing the pain...
Posts: 220 | From Kansas | Registered: Mar 2010
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posted
also, my shin bones are very tender, and when i touch them i can feel lumps... i can't feel these lumps anywhere else :/ i should have got an x-ray when my insurance would have covered it.
Posts: 220 | From Kansas | Registered: Mar 2010
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posted
It is deep pain in the spine. It was so painful at times that it was unbearable to sleep on it. It is not muscular.....it feels like bone pain.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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seekhelp
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I had this bad when I first fell ill. It would make me dry heave. It was always in the calves/shins and forearms. Docs never think anything of it. Biaxin got rid of it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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BoxerMom
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I had this. You could have Bartonella quintana. It used to be called "trench fever" or "bone-break fever." It causes pain in the leg bones, most often the shins (tibias), and can be so bad it feels like your bones are breaking.
The Bartonella test from Fry doesn't differentiate between B. quintana and B. henselae. I think I have both.
My pain was mostly in my fibulas (sides of the lower legs), and it did feel like they were breaking. It was worse during a Bartonella herx. It is much better now.
I don't think the bones are infected. I think the periosteum, the membrane around the bone, gets inflamed and pulls on the bone.
The lumps on the shins are another condition. I can't think of the name. They will also go away with treatment.
Try ice packs and/or anti-inflammatories. And keep treating.
posted
Dr S mentions the shin bone pain in his book under symptoms for Bart.
Posts: 448 | From minnesota | Registered: Feb 2010
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Carol in PA
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quote:Originally posted by kellephant: i'm already taking vitamin d and magnesium, but it doesn't seem to be helping. exactly how much should i be taking?
Magnesium: which form are you taking, and how much.
Vitamin D: how much are you taking, and what kind.
Do not bother with Magnesium oxide, as it's very poorly absorbed. Taking magnesium with dairy or calcium will retard its absorption.
Get Vitamin D3. It needs fat to be absorbed in the gut, so either take it with something fatty or buy the kind that's in oil, in a gelcap.
You can take up to 1000 mg of magnesium daily, in divided doses, up to bowel tolerance. Foods high in magnesium include almonds, pumpkin seeds, beans.
Eat kidney beans, lima beans, bean soup, baked beans, bean burritos, refried beans, rice and beans.
People here have said that their doctors prescribed 2000 to 5000 mg daily of Vitamin D3. Some take a dose of 50,000 mg once per week.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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nefferdun
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I agree it is bartonella. I have had it too and it gets better with bart treatment. Even if you test Negative, don't let this throw you as I was told by a LLMD that there are over 200 strains of bart and the labs only test for two.
I was not diagnosed with bart until a year after the diagnosis for lyme. Everyone online kept telling me my symptoms sounded like bart so I made an appointment with an LLMD and sure enough. . . .
Had to correct one of my brain dead mistakes saying positive instead of negative.
-------------------- 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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posted
i have soooo many symptoms of bart... haven't been diagnosed with it though. i've only seen my LLMD once so far...
right now i'm taking 500mg of zithromax a day.
also taking 6000 mg of vit d daily, and it turns out, the magnesium i have is magnesium oxide... i didn't realize there was more than one kind... it just says "magnesium" on the front of the bottle.
i am just so frustrated today... i'm so sick of the pain. i can't get any relief
anyway, thank you everyone for your input!
i think i'm going to try to go see my old chiropractor soon. he's the only docotr who has ever really cared about me. i feel like if anyone will try to help me, it's him...
Posts: 220 | From Kansas | Registered: Mar 2010
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karenl
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posted
I have no bone pain but horrible roaring, vibrations and movement in many bones. Wakes me up during sleep.You are right, it feels like bone marrow cancer. It is better since I am on doxy, but not over. I have it in legs, hips, lower spine.
Posts: 1834 | From US | Registered: Oct 2008
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and thanks lymextu... i seem to have bowel intolerence to EVERYTHING now that im on zithromax, so im not sure how ill be able to figure out the right dosage :/ i'll get some soon though!
going to eat something fatty with my vitamin d now like carol suggested.
Posts: 220 | From Kansas | Registered: Mar 2010
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Dear Kelle & gatorade girl, So sorry to hear of your ongoing pain!
Unfortunately, bone pain is common for those with co-infections. I agree with others above, that it sounds like B. quintana, as far as Bartonellosis is dx clinically. Painful subcutaneous lumps are another sign experienced LLMDs recognize.
Found a thorough scientific article out of Univ of TX w/ lots of info on the symptoms you described and more, including tx with abx.
Note imho, this article is NOT from any LLMDs. There's a focus on patients with HIV. Still quite informative.
AlanaSuzanne posted about the new Galaxy lab in Durham, NC which can test for numerous Bartonella spp. Maybe you could be tested there? It's expensive, though. Most other blood work will just report false negatives for Bart.
As for Vit D3, it's best to have blood work for that (LabCorp or reg lab for CBC). I understand we get higher doses at first to correct deficiencies, repeat CBC to check levels, then later lower doses of Vit D3 supps to maintain good health.
My Vit D3 was flagged low, so PCP duck suggested 800 IU. I was already taking that with multi-vit and supps. In contrast, my LLMD just put me on 5,000 IU once per day with food. To have it with fat, just a handful of almonds or walnuts will do. I have follow-up blood work scheduled.
I have some Bart sp for sure. Probably B. quintana at least. I don't know if this impacted my Lyme Bb or Bart or what parasite, but i get very good relief from Terry Naturally Curamin. Love it!
posted
ah, i don't know what half of these supplements are... it seems like if i took everything that i needed, i'd be taking 100 different things. it's just so confusing and expensive!
i'm on nystatin for pro-biotics, and i eat 2 plain yogurts everyday.
i know anti-biotics have a tendency to cause digestive problems... at least these aren't making me throw up like doxy did.
i put myself on a mostly liquid diet for now to help cope... except for the hamburger patty i eat everyday, which i'll take my d3 with from now on.
thanks for the article!
Posts: 220 | From Kansas | Registered: Mar 2010
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i have the same problem... pain medicine is pretty much useless. nothing seems to help!
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quote:Originally posted by kellephant: ah, i don't know what half of these supplements are... it seems like if i took everything that i needed, i'd be taking 100 different things. it's just so confusing and expensive!
i'm on nystatin for pro-biotics, and i eat 2 plain yogurts everyday.
i know anti-biotics have a tendency to cause digestive problems... at least these aren't making me throw up like doxy did.
i put myself on a mostly liquid diet for now to help cope... except for the hamburger patty i eat everyday, which i'll take my d3 with from now on.
Nystatin isn't pro-biotic, it's an anti-biotic. So, basically the opposite. It's an anti-fungal medication used to kill yeast.
I advise against hamburger in general, unless it's from an excellent, organic, very clean source. Many antibiotics & pathogens in most hamburgers. Also, beef is hard to digest and the protein is less available to humans than that which you'll find in egg whites, low-fat cottage cheese, or fish. Skinless white meat turkey and/or chicken would be better. Sorry, Kelle! Have you tried ground turkey?
Eating some yogurt is helpful, but it's also high in natural sugars. Consider sprinkling in cinnamon, ground flaxseed, and maybe walnuts to make it more beneficial.
I urge you to start eating brown rice, oat bran, garlic, onions (or lots of onion powder), organic leafy greens, cukes, Brussels sprouts, broccoli, cauliflower, green beans, organic carrots... We need lots of fresh or frozen veggies and high fiber diets. Use cayanne pepper, cinnamon, and/or turmeric to season meals whenever you can.
Fortunately, Dr. B's Treatment Guidelines list Nutritional Supplements in order of importance beginning on pg 28. Kefir is #1. Acidophilus does not need to be a refrigerated brand.
And yup, many LD patients seeking long-term remission take lots of supps! With my Rxs for Babesosis, no I take 68 pills/day in 6 different dosing regimens (3 w/ food and 3 on empty stomach, but all 6 are unique combo of supps and several meds.) You could certainly do well on less, I'm just trying to maximize success asap after more than 20 yrs with no Lyme treatment!
Besides individualized advice from a LLMD, the best place i know to get a good, digestible & cost-effective education on nutrition is:
Prescription for Nutritional Healing 4th Ed. by Phyllis A. Balch, CNC.
I open this book again & again. Excellent in many ways except the pages on Lyme are useless. Everything else has served me, my family, and friends very well.
The book is sold & on hand in nearly every health food store, average bookstore, and several grocery store chains, too. Look up your issues of most concern (like Weakened Immune System, Ulcerative Colitis, Insomnia, Back Pain, etc.) and supplements are listed in descending order of essential, very important, important, or helpful. I've often asked to see the store copy before making a purchase.
I hope i typed in some things that may assist you, Smile
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quote:Originally posted by littlebit27: I've also got the pain-I take mag-doesn't help. Even most pain medicines I had wouldn't touch it, horrible pain.
Dear littlebit, I wince to think of you still working as a painter! That's got to be among the most challenging occupations for our kind of pains. Gentle hugs for you...
Have you tried Curamin by Terry Naturally yet? That's the product that has allowed me to discontinue pain meds for the most part, most days/wk. A friend bought if for me, and soon i'll purchase my third bottle so i'll never be out.
Saw Curamin suggested on this presentation after i'd already become a huge fan:
I know Curamin works because i missed two doses once and pains came back. I take one cap 3x/day on empty stomach. Could do up to 4 caps/day i think. It is a bit pricey, but cheaper than the other things i used to need.
Another product that has been beneficial to me over the years as a fibromyalgia sufferer is Malic Relief Formula by BioChem. Again, I'm sure it works to reduce my pain because I started on it with no other changes and got better. Later ran out and got worse. I take 2 tabs/day with food and away from abx (so that means lunch now).
Ymmv on all this. I'm not a healthcare professional; just sharing experiences.
posted
my yogurt is not high in sugar, it is completely plain, and only has 6 grams believe me, it's gross. you can taste the lack of sugar
as for hamburger, it is the only meat i can stand right now. and it is temporary while i am trying to lose weight on a low-carb diet. i feel like the diet i created is what is best for ME, because i can actually stand it, AND lose weight. i really don't like meat to be honest, but will eat one hamburger patty a day for the time being. i think it's easy for people to tell me a better diet, but they do not have my body, and they don't understand what works for and against it. my body defies the laws of science... seriously.
*sigh* this disease just overwhelms me. there's SO much information, and i feel like all the millions of little things suggested don't make enough difference to be worth the trouble... but that's just my personal take.
Posts: 220 | From Kansas | Registered: Mar 2010
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Dear Kelle, I remember you'd written about your burger before, but couldn't remember what/when. Sorry you're still in a sensitive tummy zone.
Never imagined you were eating added sugar, just thinking of the natural milk sugars in yogurt.
Each of us is unique and YOU are the best authority on your health care. Agreed!
i'm gonna have the nerve to toss out another idea here. Thinkin' at some point you'll venture back to another food or two...
Raita is a fun yogurt dish. Easy to make, just combine all ingredients and chill. Here are two from Molly Katzen's Moosewood Cookbook that ea serve about 6:
Cucumber Raita 1 med cuke (peeled, seeded, and minced or grated) 3 cups plain organic yogurt 1 tsp cumin seed 1 tsp salt dash of cayenne
Banana Raita 2 ripe bananas 3 cups yogurt dash of cayenne dash of cinnamon dash of cardamom 1 tsp fresh lemon juice
fyi, i generally kinda hated cinnamon for decades, but now add it to yogurt, oat bran, multi-grain pancakes, and French toast. Cinnamon actually makes one feel more satiated after eating.
According to Phyllis A. Balch, cinnamon also relieves diarrhea and nausea, enhances digestion, aids circulation, fights fungal infection and is useful for weight loss! Only contradicted when prego.
LD is overwhelming. Could be best to just focus on Dr. B's Guidelines and take a nap today... Down the road, you may read more about B. quintana if you're up to it. Fondly, Smile
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nefferdun
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Unfortunately not treating bart is very painful. I was in such spasms that nothing could relieve the pain and I was taking the strong pain meds. I spent hours pressed against a heating pad or in a hot tub.
Then when you start treating the bart, the pain can worsen for awhile but it gets better. I only have some pain left in my shins now and that is so slight I could ignore it and quit abx, which I have learned not to do as everything comes right back if there is anything left.
You could try quercitin which helps with citokin inflammation. But that will only work if you are in more pain from killing the bacteria, not at all if the bacteria are thriving.
The abx can cause problems with digestion. You might try adding apple cider vinegar with the mother. It helps with indigestion and is also said to be very good for your health in other ways including arthritic pain. Buy it from the health food store and use it as the vinegar on your salads, with olive oil.
I eat yogurt everyday. I don't have a problem with lactose or the small amount of glucose in it. But I also take a probiotic that I get from the health food store. Once your tongue turns white, then green and finally black, you realize the value of a good probiotic.
-------------------- 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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believe me, it's gross. you can taste the lack of sugar 
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