posted
I've been in treatment for Lyme for a year now. I have also been treated for Babesia and Bartonella.
About 6 wks ago my doctor took me off doxy and put me on 50mg minocycline 2x/day. I also take 15 drops A-Bart and 5 drops A-Bab 2x/day. I am seeing Dr. S in Towson. I've heard he is one of the best.
Due to ear ringing he took me off of Zithromax and Levaquin afraid they could be causing it, and since being off the ringing has gone away. I have pain in the soles of my feet, my elbows and knees, pressure in the side of my right cheek, and now I am getting this muscle pain that is continually getting worse in both legs and in my arms.
My LLMD said he couldn't explain my muscle pain and suggested that I see my primary physician about it. Isn't muscle pain part of Bart or Lyme? I can barely stand by the end of the day because of the pain.
I need help and I don't know who to turn to. I can barely sleep at night because the pain is so bad. The pain is usually better in the morning and gets progressively worse at night.
Please tell me if you have had muscle pain and what yours has been diagnosed as, or what type of doctor you see.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes, Lyme/co's can cause muscle pain.
Are you taking Magnesium? If not, it may help. Also Epsom salt bath soaks can help with muscle pain.
Also need to have your thyroid evaluated. Hypothyroid can cause muscle pain. When tested, make sure they look at TSH, Free T3, Free T4, and thyroid antibodies...not just TSH. See http://www.stopthethyroidmadness.com/ for more info.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I always experiment to see what can relieve a symptom. In this case, it could be heat, ice, stretching, massage, a massager, topical pain-relieving gel, pain meds - try anything to see what works, and then you could report back and we can discuss further.
Posts: 13116 | From San Francisco | Registered: May 2006
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
My husband has muscle pain. His doctor said its from Babesia.
The doctor suggested Boswellia. We tried it along with another new supplement same time. We didn't use our brains on that one! He's sensitive to changes in his supplements.
We stopped both new things, giving him a break, and next week will restart ONE at a time!!
Posts: 2252 | From USA | Registered: Aug 2011
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posted
I am on Armor Thyroid for Hypothyroidism. I take 250MG Magnesium 2x a day now. I have an appt for a Swedish massage today but I'm afraid that might make things worse. This isn't just a little muscle pain.
I feel like I can hardly stand. It seems like it's spreading to my entire body, but mostly legs and arms. This is the worst I've felt in a very long time. I need to find something that will help and fast.
I don't know what to do if my LLMD says he can't help. I'm so discouraged and in fear of losing my job over this disease.
Posts: 50 | From Maryland | Registered: Sep 2012
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posted
Boxermom, my deep muscle pain has been related to potassium and magnesium deficiency. This might seem too easy, but for mine, my ND suggested I eat an avocado for potassium each day and of course do epsom salt baths/magnesium supplement.
I did not believe the avocado would make much of a difference, but within two days, the deep muscle pain magically started fading. If I go too long without potassium rich food, it starts again...
Just thought I'd share in case it would help you. Sorry you are hurting so badly.
Posts: 428 | From Midwest | Registered: Dec 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I think your LLMD can't push it with prescribing you pain meds- so saying if you need them, hopefully somewhere else.
I used to take nightly Epsom salt baths, 4 cups of salt, body brush beforehand-
Massage does help me- sometimes it takes a few days afterwards -
Liquid Advil gel caps as well- not the best for the stomach, but it helps.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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MannaMe
Frequent Contributor (1K+ posts)
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posted
daynise, how much magnesium do you take as a supplement?
Posts: 2252 | From USA | Registered: Aug 2011
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posted
I usually take 200mg-400mg depending on how I'm feeling. Too much causes me diarrhea.
I'm on a Amino-Mag by Douglas Laboratories because my ND likes the absorb-ability of this magnesium specifically.
I also try to do 2 epsom salt bath soaks daily.
Ok, Boxermom I have a question- I read back through again and you are on A-Bart and switched some meds- so I wondered is this pain more of a burning or a cramping?
The cramping for me is potassium/mag deficiency- like charlie horse pain everywhere.
But full body muscle burning happens to me when I push A-Bart (or anything else that provokes Bart) too much for my system. I literally feel as though I am dying with this burning. If this is what you are having, it is a HERX and the only thing that makes it stop for me instantly are coffee enemas.
15 drops is a ton to start off with on A-Bart- I am only on 1/5 a drop a day!!! If you can try the coffee enema, it might truly lessen your pain. Oh I feel so bad for you if you are having that awful body burning! ((((hugs))))
Posts: 428 | From Midwest | Registered: Dec 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Boxermom-
"I can barely stand by the end of the day because of the pain.
I need help and I don't know who to turn to. I can barely sleep at night because the pain is so bad. The pain is usually better in the morning and gets progressively worse at night."
Yes yes yes! Those are exactly the words I use to describe it!
And I am worried about losing my job also because of this.
I take 400-600 mg magnesium per day, do my Epsom soaks every night before bed, and rub diluted Thieve's oil on my legs every night.
I am in the same boat. NSAIDS don't even touch this pain. It feels like the muscles and tendons are ripping off the bone. I am seriously considering some type of narcotic-type pain reliever but I don't want to start those for fear of dependency.
My infrared sauna helps, but it's been so hot outside, I haven't been able to go in there.
I drink coconut water, take a potassium supplement, and used to eat an avocado a day as well, but I didn't notice those helped with this pain. They help with muscle pain and cramping.
I read online yesterday that tendon pain is (my Achilles feel so brittle-like they may snap), is another co infection. Erlichia (sp?). I will try to find that link.
I don't have a solution for this pain. It is so bad at night it makes my teeth chatter.
I'm sorry I can't be more helpful.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
My muscles don't burn, they just ache terribly. My elbows and knees sometimes throb. I researched foods high in potassium, and my DH is going to the store to get a few things.
I started with 1 drop of A-Bart 2x/day and slowly worked up to 15 drops 2x/day at the LLMD's advice. I really don't know how to tell if it's Herx from the drops. I've had pain in the soles of my feet for 2 months now. It gets better and then worse again.
I don't know anything about coffee enemas. I need to research how to and how often to do it. I'll try anything at this point. I think I would rather be admitted to an ER at a hospital that has some knowledge of Lyme and Co-infections at this point. I just don't know where to go.
I've invested so much $$ in my LLMD and I'm so disappointed in him right now. He is leaving me high and dry and leaving me to have to figure this out on my own. I'm not a doctor! Are there ANY LLMD's out there who take insurance?
Posts: 50 | From Maryland | Registered: Sep 2012
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posted
My muscles don't burn, they just ache terribly. My elbows and knees sometimes throb. I researched foods high in potassium, and my DH is going to the store to get a few things.
I started with 1 drop of A-Bart 2x/day and slowly worked up to 15 drops 2x/day at the LLMD's advice. I really don't know how to tell if it's Herx from the drops. I've had pain in the soles of my feet for 2 months now. It gets better and then worse again.
I don't know anything about coffee enemas. I need to research how to and how often to do it. I'll try anything at this point. I think I would rather be admitted to an ER at a hospital that has some knowledge of Lyme and Co-infections at this point. I just don't know where to go.
I've invested so much $$ in my LLMD and I'm so disappointed in him right now. He is leaving me high and dry and leaving me to have to figure this out on my own. I'm not a doctor! Are there ANY LLMD's out there who take insurance?
Posts: 50 | From Maryland | Registered: Sep 2012
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posted
Ok- if you want to try it coffee enemas are very helpful. And although it is not something I like doing, I force myself when the pain is so bad because it does help so much-
If you can, have someone get you some: 1. purified water 2. an enema kit 3. organic coffee
Brew the coffee with the purified water and let it cool to room temperature.
Just make sure it's neither cold nor hot when you use- don't want to upset your intestines with anything that can burn and cold causes cramping- so room temp is best.
Then you make a comfortable place with some towels in the bathroom.
The enema kit should come with instructions.
I use coconut oil on the tube to make sure I don't irritate anything when I put it in.
My colonics lady told me the best way to think about how much liquid to allow in at a time is to let it go in until "you feel like you have to go to the bathroom yesterday".
Then lie on your back and try to hold it in until you can't.
Empty your bowels, repeat...
It really helps.
If you can, try to drink some lemon/salt water before hand. It will help with any dehydration issues before/after
My ND told us that my pain is due to Bart treatment herx and a backed up system when detoxing- like too much die off and not enough detox, so the body is absorbing toxins and this causes painful inflammation.
I so hope you get relief soon. That pain is terrible.
Posts: 428 | From Midwest | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ball of foot for sure bart. Can u take rifampin. It took my foot pain away
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I'm not taking detox suppliments. They were never presribed/recommeded by my LLMD.
That coffee enema seems like a real chore, but I guess it wouldn't hurt to try it. I'll have to get out when I have the strength to and get those items. Where do you get the enema kit? A drug store? Walmart?
I've never tried Rifampin. What really concerns me is that I'm only on A-Bart for the bartonella. I don't know if that's enough combined with the Minocycline. Maybe I should try going back on the Zithromax and see if the ear pain comes back. I've been laying in bed most of the day today. Posts: 50 | From Maryland | Registered: Sep 2012
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posted
Do you think that being on my period is making things much worse? Does that have an effect on potassium?
Posts: 50 | From Maryland | Registered: Sep 2012
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posted
you can pick up a kit from most drug stores. i'm not going to lie, it's a little annoying, but it's been one of the only things thats helped my muscle pain.
yes, your period could definitely be exacerbating things! that's a whole other detoxing going on at the same time!
Posts: 428 | From Midwest | Registered: Dec 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Boxer mom I have struggled with muscle pain as well. What usually helps me is lots of lemon water and vitamin C. Try taking 1000mg and see if it helps. It usually works rather quickly.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Thank you all so much! I just took some potassium and magnesium, and ate a banana. DH bought avocados, but they are too firm. I'm new to avocados, so I'm still learning what is ripe vs too ripe. How long do they usually last?
I'm going to take some C now, and add lemon to the water I'm drinking. I'll report back if anything actually helps!
Posts: 50 | From Maryland | Registered: Sep 2012
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Abxnomore
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Member # 18936
posted
Put the avocados in a brown paper bag to ripen. It should have some give to it when ripe but it shouldn't be squishy. They taste bad when then are over ripe and often get black spots on the peeled flesh.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
My muscle pain was actually nerve pain. It was deep muscle pain in my shoulders, not burning or tingling nerve pain. Like someone else said, Ibuprofen didn't help. I tried Lyrica as a shot in the dark and it actually helped.
posted
Thanks abxnomore for the Avocado info. I guess it could be nerve pain, but I have no idea how to tell. I took the Vitamin C and drank lemon water and my legs and arms seem to be a bit improved, but still very uncomfortable.
Now I have lower back pain too. Posts: 50 | From Maryland | Registered: Sep 2012
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posted
After the magnesium, potassium and Vit C supplements I was finally getting some relief from the muscle pain and was able to get outside and enjoy the weather. I didn't go anywhere, and I look like a darn mess, but at least it helped. Thanks again to everyone!
I'll report back if I have issues tomorrow. I just took more magnesium and potassium because it felt like the pain was getting worse again. Thank God for a very supportive husband/family!
Posts: 50 | From Maryland | Registered: Sep 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
That's great that you were able to get some relief!
posted
If you are not taking supplements like alpha lipoic acid or NAC the die off is going to make all pain worse. Magnesium can help but you need some detox.
The supplements will help with getting rid of die off toxins and you should try to get in more water daily if you can to help flush them out.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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GretaM
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posted
Boxermom-how are you feeling today? Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Faithful777, I do take NAC, I just didn't know it was a detox supplement. I take it once day. I also drink a ton of water, so that is covered. Is the lipoic acid the supplement that you are only supposed to take if you are in the beginning stages of Lyme? I know there is one supplement that can actually make it worse if you take it during late stages.
GretaM, I feel terrible today! I didn't feel that great this morning, but since we took the week off my DH and I went out and by 5pm my legs were killing me. My feet too. we came home and I took an epsom/peroxide/baking soda bath. Now I'm just laying here praying for a miracle.
I have an appt with my primary physician in the morning. I also left another message for my LLMD. His receptionist called me today asking several questions. I really do think this could be Bartonella, and I pray that it isn't Babesia, since my other bart symptoms are so bad and I know you can't treat both at once.
Posts: 50 | From Maryland | Registered: Sep 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Boxermom-argh, I'm sorry to hear you're not feeling any better.
I didn't realize one can't treat Bart and babs at the same time... Specific reason? Or just overload on detox pathways?
I hear you about lower leg pain. I feel like my Achilles are going to rip off my heels.
I hope one of your docs has a solutions for the pain you're having!
Not fun to spend the day debilitated, in bed
I hope you get some relief from the pain tonight.
Best wishes, Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
GretaM, thanks for the good thoughts. I started feeling better last Tuesday, and now the muscle pain has returned again. I really think it's Bart!
I called BW and they said the two suppliments were meant to be used separately because they are unique formulas and combining them changes the make up of the suppliment. It makes sense to me. I'm sure certain components work together, and when you add in the components of the other drops is throws off the balance.
My Rhuematologist gave me a sample of Savella, which is meant for Fibromyalgia. I took some last night, and I know it can take a few days to become effective, so I'm hoping to get enough relief to be able to work through Friday.
Posts: 50 | From Maryland | Registered: Sep 2012
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Boxermom has your pain lessened any over the last couple of months? Did you ever figure out what was causing it? I'm having the SAME EXACT symptoms!! I hurt all over. My knees, elbows, my arm and leg muscles hurt all over. It's a deep, deep ache as well as a little bit of burning nerve pain around my knees.
I honestly think I'm dealing with a HUGE flair of both Bart and babs. Ugh!!!!!!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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