posted
I have very advanced lyme in my bones, it's sad for me to say. I have limited mobility in my spine, hips, thighs, etc. The pain is unbearable. My neuro lyme did get better on abx. but for some reason abx made the bone lyme a Million times more advanced. Are there any abx that are better for lyme in the bones? Do any abx penetrate the BBB and get to the bones?? Has anyone with lyme ever recovered from the bone phase? also is IV rocephin the best drug for the bone form? I have a huge hump on my lower back. My bones are super swollen I feel like the hunchback of Notredame. Help anyone!
posted
Hi Citruslyme, I'm so sorry for the pain and suffering you are going through. I wanted to encourage you to write in to Stephen Buhner on his Healing Lyme column on Planet Thrive. He might have some insight for you and some herbs that might offer some amount of relief. To ask a question of him, you need to become a free member at Planet Thrive. His column is in the INSIGHT section of the site, under "Ask a Natural Living Expert".
posted
Hi Thanks I am taking his herbs and do have his email. I just wanted to ask anyone if abx ever cured them of the lyme in their bones?
I feel like abx does not get to the bones. Is this true?
Is lyme in the bones incurable?
I would love to get some encouragement here. if anyone had the lyme and got better ? I have really really bad lyme in the bones.
and I wanted to hear some experiences from everyone here who ever had pain in the knees, hips, spine etc and got better on abx. What abx helped/ what abx didn't? what abx is best at penetrating the bones?
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
you know, that's where my pain was, and I assumed it was bartonella (though I don't test positive for it on the Igenex test). My doctor also thinks that's the case.
My pain did go away with my doxy and then later azithromycin (I didn't combine them or anything). Later, when it returned after I stopped antibiotics, I managed to chase it away with the core protocol herbs and boneset tea and red root. I think it took a few weeks of boneset- and I'd rate my level of that pain as pretty low- so it might take you longer if the same boneset helps you.
I have had it return recently when I had either a short relapse, major yeast outbreak, or a virus (or all of the above). Right now it's with me despite the boneset tea- but the pain is extremely mild compared to anything I had before with the bart/Lyme- and this tells me that if someone else on herbs had this relapse it might be more severe.
Mark
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
(I think citrus is taking boneset by the way, I sent her some- though no problem for me of course if she hasnt been for some reason- anyway, the rest of these comments assume she's been taking it)
I noticed a herx when I started the boneset tea, that's part of my thinking I had bartonella (though I have little info on boneset and bartonella- boneset mainly stimulates your immune system and acts like a mild pain reliever sometimes). Buhner recommends boneset and red root (and core protocoh herbs) for bartonella. I rarely have herxed on anything and I think this one took the form of more pain than previously.
Also, my bone pain had been with me when I first had active Lyme early on after being bitten. It went away after my initial antibiotic treatment and didn't come back for years.
What brought it back was my treatment for the past year. I doubt that means the antibiotics and herbs made anythign worse, but I do think some of our problems become more noticable with treatment temporarily (and yes, temporarily can mean months or whatever)
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi,
I'm not sure we have the same kind of bone pain. Mine is in my joints and correlates with inflammation.
I tried accupuncture which did set my bones screaming. So far, not in my spine though has been in my neck for years.
My hands, ankles, feet and most recently knees have all been afffected. Initially, shoulders, elbows and jaw too, but thankfully they have not flared in almost a year.
I am nearly well after 19 months of battle. No abx for lyme yet, although I did take 2 weeks abx just this past month for HP Ulcer and I experienced quite a herx (flu like symptoms) This only lasted a couple of days. My joint pain increased during the abx but resolved once I stopped the abx. However, it now seems my stomach is trashed from just 2 weeks of abx. grrr
I just spent the entire weekend horseback riding. On Saturday, we were clearing downed trees from the trail. Most of the time when I ride, I baby myself. I use a mounting block and once up, tend to stay there. Saturday though, I was on and off the horse a dozen times. This is extremely hard on my left ankle (mounting leg) knees and hands. I did great!
Then the group decided to run and I was standing in my stirrups working every muscle and joint I have to hold my horse in.
I figured I would be dead the next day, but nope. I rode again though much easier ride. This morning I have sore ankles, but that is all and many "healthy" riders on that ride are hurting worse than me.
So yes, you can get better. Not necessarily from abx. It depends on what is causing your pain. You may have sufficiently knocked down the lyme but are now dealing with a leaky gut, food allergies and/or yeast in the joints that you don't even realize you have. Abx are the #1 destroyer of the intestinal lining.
Perhaps you need a doctor to look at these issues and if you have them, the doctor can help you resolve them. Then see where you stand with your bone pain.
Use a doctor. Self-treatment is such a waste of time and money.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Dear Citrus:
My heart breaks to hear your suffering. I also have bone pain.
I can tell you that when I saw the good Dr. J. in North Carolina last year, he put me on Cleocin orals. I know that can also be done I.V.
Cleocin is not an antibiotic I had used in my previous 3 years of treatment. If you read the drug insert, it is used to treat infection in the bones.
It hit the bone pain really hard, and I made really good progress.
Unfortunately, the side effects of cleocin ( I have a high incidence of antibiotic sensitivity) caused me to drop the treatment and I regressed a little.
Speak to your doctor about Cleocin, and take lots of ascidolphlus while on it. It can do a job on your guts.
best of luck for a full recovery, Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
Hi the bone pain is severe. It feels like someone put burning acid on my bones to disintegrate them. It hurts to touch them and they are tender. My breast bone is so swollen I can't breath. I cried a month ago b/c my spine was locking in place. the joints in my thighs are giving them limited mobbility and I can only take baby steps.
It is interesting someone mentioned it could be yeast there maybed. I think I may have a fungal infection as ART showed a lot of fungi and I read blastomycosis is endemic to where I live and can mimic some lyme symptoms.
cleocin-- is that clindamycin IV?
It's amazing how that helped you! Is Iv rocephin any good at penetrating the bones?
My infection is pretty bad and bax just made the lyme go deeper. I have a hump on my back for crying out loud and the pain is unbearable.
posted
OK so rocephin only works on the central nervous system?
it does not work on lyme in the bones? really?
That's quite disapointing. I checked out cleocin and that's clindamycin IV. I tried oral clindamycin and it did not help much, it works better for babs in combo with quinine.
There is no reference to it that it works against borrelia.
I read clinda works for bone infections-- true but for specific bacteria , do you know how susceptible the spirochetes are to it?
posted
my whole lower back is indented and I have a huge hump on the bone. you can even put a cup on it and the hump will hold it. my spine hurts so much it is red , tender, and I can't touch the bone b/c the pain is excruciating.
my hip joints are so red and swollen that I have limited mobility.
My breast bone is so red and swollen that the hospital said it may affect my breathing. a female doc told me that she never saw such swollen breast bones before.
my worst sx would be the infetcion in my back. the ketes are making me lose mobility and I look like the hunchback of Notredame.
The pain is sooo bad , it's tender and feels like acid that is disintegrating my bone.
This began a year ago and has worsened.
I have not goten any more radiological testing done as I've done tooo much in the past years before I knew I had lyme and it was unhealthy.
my bone scan from 4 years ago mentioned a jaw infection
But back then I did not have the bone pain elsewhere.
I wish someone with lyme in their bones could contact me and share their experiences. it is really rough
posted
lyme does get into the bones and in my case, it crumbled...and i do mean crumbled, 2 discs in my neck at different times, both had to be replaced with a piece of hip bone and fused. i also broke my foot one day just walking accross a room with carpet. i had to also have foot surgery to have the chip removed and some holes drilled into my large toe joint for better blood circulation.
i was first infected in 1989, but went 5 years undiagnosed. the weakening of my bones stopped after long term IV antibiotics. first rocephin and then vancomycin. that was years ago. i suffer now from CNS symptoms more than anything. the worst is periphial nueropathy with unbelievable leg and foot pain and severe headaches and depression. the years of on and off treatment helped many things, but not everything. i never even knew lyme coud get into bones but guess it infects the bone marrow like any other system.
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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