posted
I was diagnosed with Lyme disease almost 3 months ago. My symptoms are mostly neuro, with debilitating dizziness at the top of the list. (Shakiness, slurring speech, a seeming inner ear disorder, extreme noise sensitivity, unable to turn head left and right, etc.) I have had no pain that I can say, "That's the Lyme Disease!" for the entire time.
For 3 or so years, I've gotten muscle pain starting in my upper back if I work too hard or if I don't get enough sleep... if I don't realize what's going on (think I just have an achey back) and ignore it, it gets progressively worse. I have WONDERED if that is the Lyme disease, but that would mean I've had it for 3+ years. This was never something I had before the point when it suddenly started. (Actually, it took 4-6 weeks of pain to figure out it was work/sleep related.)
Ok, now to "today". Upon beginning treatment, nearly 3 months ago, I became very, very sick. (Not well enough to sit up for more than a few minutes, for 8 or so weeks, head reeling, shaking as soon as I'd stand up, and I literally LOST MY MIND overnight...) After 4 weeks, the Dr. took me off all antibiotics. At 8 weeks I was still very sick, but I got sicker because I got the flu which turned into bronchitis (involving my asthma, another first) which turned into pneumonia. ON TOP of how I was already feeling!
It was after the 2 week course of levaquin that I got the pneumonia, so I'm currently on 2 more weeks of clarithromycin for that, though I'm feeling much better. The Dr. also changed my detoxing regime, and FINALLY my body was able to detox and feel better from that 2+ month long herxheimer reaction. (!)
A week or so into the clarithromycin, one knee started to hurt. (significant pain, causing some trouble walking, especially on the stairs.) After 2-3 days that knee didn't hurt as much, but the other one hurt. Same pain! Both knees got better, but a couple of days later, my BACK started to hurt, badly.
WHAT is going on here? Might this be due to the new med? (My Lyme Dr. said this antibiotic may interact with the lyme disease, and cause more herxing, but I have never had pain that I can say with certainty is from the lyme.)
I'm 2 days into the severe back pain, and I can hardly walk or move. I sit up in a hard chair (which makes my dizziness worse), or lay on my side in bed. Every arching/curling motion (even the slightest) increases the pain, and when taking steps or moving there will suddenly be excruciating pain, like I feel like my back is about to fall apart or something.
Is this the Lyme?
Craziness.
Posts: 60 | From PA | Registered: Jun 2012
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I has also gotten back pain, while on long term ABX treatment, where I never had before.
It was gradual and over a few days. Each day my back pain will get worst & by day 4 I was on the couch the whole day & it felt like I was getting paralyzed.
Luckily the next day it felt a little better and I was mobile again. The day after that more mobility & 4 days later it was all gone.
I have had many of those type of experiences or disturbed spots. From arms, legs, back, or under ribs. They come & go. I think it is the pathogens within us accumulation & then our immune steps in & cleans out the larger clumps/or aggregations.
Posts: 2087 | From NY | Registered: Oct 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Some of your symptoms look like magnesium deficiency.
Sensitivity to noise -- spasms of the tiny inner ear muscles. Asthma -- spasms of the alveoli Muscle spasms, causing back pain
Are you taking magnesium? You'll also need Vitamin D3 and boron.
I can also see a problem with the multiple antibiotics killing off the good bacteria in the intestines. These bacteria help to digest the food, and when they are out of balance, you end up with other problems.
Kefir is an excellent source of beneficial intestinal bacteria. I make it using the powdered starter, and I notice a difference in my digestion and (lack of) gas whenever I make it.
You may need a good B complex. And B12...methylcobalamine, either sublingual or patch.
I think you have more going on than just vitamin and mineral deficiencies, but these are things you can do yourself.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Part of the reason you need magnesium is that the Lyme bacteria live in our nerve cells and use it up. All of the enzyme processes in our cells need magnesium to work, and when it's depleted, we suffer.
Also, when Lyme bacteria are killed, they leave behind toxins. The liver need magnesium to make glutathione, which it uses to detoxify poisons in the blood.
So, taking magnesium provides liver support, to help it do its job.
Something else that would be helpful for the muscle spasms would be pulsed magnetic fields. The SOTA Magnetic Pulser does this, and it relaxes muscle spasms and promotes cell healing.
I have used it anywhere I have pain or inflammation, with good results. I credit it with fixing my knee pain, stopping a toothache, and relaxing muscle spasms.
In the meantime, you could try a hot pack on the muscles in spasm. You can make your own rice pack by putting dry rice in a tube sock, and knotting the end or sewing it closed. Heat it carefully in the microwave. It'll get steamy hot, and will hold the heat for a while.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
See if you can play around with heat, like what Carol is suggesting, including trying a heating pad, hot shower - anything to take the pain level down - also helps get more circulation going.
If it is herxing from the meds, maybe you need to do some detoxing. You can use the Search function at the top of the page, type in any word, and archived threads will come up that you can read through for what people have done.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Thanks for the input. It is not muscle pain, but joint pain, as far as I can tell. I called me Dr. yesterday and before I could even finish the story, she said, "Well that sounds like a new herx from the new med!"
I have been working HARD, every day, all day long on detoxing for nearly 3 months now, because I wasn't. Everything from massage to lemon juice (every 3 hours) and everything my Dr. suggested in-between. (Prescription or not, I was spending 3-$400+ on detoxing, and nothing worked!) Finally it seems the NAC and Alpha-Liporic Acid my Dr. started me on helped, and I got over my initial herx. (It only took 2 months!)
Anyway, all that to say, I have been "detoxing" like crazy, it just wasn't working until a couple of weeks ago.
I am taking a good supplement with a b complex in it. I'll check the magnesium levels. I'm taking vitamin D and acidophilus too.
I tried a heating pad, and that helped, so I'll keep doing that. I think it is a little better than it was... but if this is a herx I'll probably find pain in another part of my body pretty soon.
What a crazy disease.
Posts: 60 | From PA | Registered: Jun 2012
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posted
I agree that you would benefit from magnesium. I have started using Magnesium oil, which is much better absorbed than oral Mg, especially when on abx. I just rub it into my skin twice a day, let it sit for 30 min and then take a shower because it`s kind of sticky. In the beginning there is a burning sensation, but that will go away with time. I read a lot about Mg deficiency; blood tests are very unreliable, because they do not tell you what is going on on a cellular level. MY LLMD told me the same. If you use Mg you will need to take Calcium, as well as Vit D3, and I also do K2 after reading that it prevents the Ca from going where you do not want it (the walls of the blood vessels, or causing calcifications in the breasts). About the back pain, WHERE does it hurt?
Posts: 210 | From VA | Registered: Mar 2002
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I agree that magnesium can help... but I think the traveling joint pain is the lyme getting stirred up and herxing. I had muscle pain/fibromyalgia for 20 years before I was dx'd and started treating. (I also found lack of sleep made it worse, which is also lyme) when I started treating... the pain moved from my muscles to my joints... I felt like I was 100 years old for 2-3 months...and then it was up and down with progressively longer ups between downs.
are you seeing a LLMD? I made my greatest strides on multiple abx at one time. most PCP's will not prescribe the abx needed to knock this down. I would not discount that you've had it for 3 years...
I love this infrared heating pad... not sure it does all it says... but it does heat you deeper-- and the heat stays with you.
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