posted
Hope this works have had trouble getting in.
Okay guys when does this Burning in legs and palms and my left elbow end. My leg is numb from knee down and once in a while will if i move it just right tingly or shock. My lip was burning today and throat.
Now i have been on meds so this is dumb most people i have seen got this before any treatment. I dont sleep for the pain. I had to ride to top of fla to meet my sister come here to live. Now i road in the back of my explorer laying down didnt sleep at all the night before. I was in tears called the doc.
Doc C perscribed predisone sixty mg a day and it helped the sever pain. I Took an ambin and because of no sleep the first night i slept sound. felt preaty good the next day no pain. Then last night pain again. Sometimes feels like my leg is out of joint so try to force move it to see if it will help.
This dont make since not sure if this is arther, lyme, bart, babesia, been treated for lyme babes. Suppose to start ramphin.
Anyone else out there with this horrible pain in hip Its my left leg. Now this burning in other places wonder if all my limbs will go numb now cause my knee did the burning thing before i had this spell and then it went numb.
Just wondering if im the only one coping with this fun side of this.
Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
Dear Graneet,
After treating Lyme very agressivly I still had pain in my knees, ankles and swelling, numbness of hands, part of my arm and hips.
Slight ringing in ears, dry/to watery itchy eyes, nasel drip, sore throat, wet and itchy ears (on the inside) and just a swollen feeling in my head.
A tiredness I just couldn't shake at times.
All at different times.
Treating for Candida has controlled all of this.
Lot's of enzymes, high Vit C and many other things.
Now when I get that numb feeling in my hands (not very often) or sore lymphs under my arms I know to pay attention to the Candida again.
I know to detox and watch out for any and all sugars, fruits, some veggies, dairy.
I know to get more rest, I take hot lavender baths twice a day that I lay on my back in the tub and rotate from back to front and side to side rubbing the lymph glands daily.
I ramp up Vit's for awhile and enzymes.
Then I back off awhile. I get longer periods of doing well in between building up the immune system than constantly taking things daily.
If you have been on Mepron for babesia, this med can bring on SEVERE neuritis which can land you in the ER.
Mepron goes straight to the brain and affects the nerves. It causes severe burning. It happened to me. I had to stop Mepron.
Ask your Doctor if you can stop the Mepron for a day or two-----whatever the normal protocol is when this happens; that's the only way you can actually get some relief.
Others will have better suggestions for you as far as pain meds. Nerve pain is different than any other kind of pain. It takes a precise med or treatment to end nerve pain.
I'm so sorry you are suffering so.
This sounds lame against your severe, severe, pain, but liquid Magnesium Citrate from Wal-Mart for $1.12 can help quieten those nerves.
Take 2 hours away from ABX.
At least, it's a start. This is a highly absorbable form of magnesium. It's almost like an Magnesium IV-----well, not as good, but it's great stuff & works fast!!
When I've had severe pain I've taken about l ounce. I didn't care if I got diarrhea.
If you are in a fragile state you don't want diarrhea.
This Magnesium Citrate is in the laxative section. I've got 4 bottles in my refrigerator right now. You can get this at any drugstore & probably some big grocery stores.
Go easy. Take to bowel tolerance. If you're having pain that bad, your nerves are desperate for magnesium.
I can only speak for myself, but I would not take the Prednisone unless it was a life or death situation.
I know you feel bad, but keep us posted. We do care how you're doing.
Take Care, Jan
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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I would not return to that doc if I was you.If he prescribes steriods for someone with lyme then he is not lyme literate and you shall get sicker.
I also started with the burning feet ,hands and lips after meds and the pins and needles.It goes away occasionally and my doc says it comes from the CNS.
Best of luck,Sue from Downunder.
Posts: 801 | From Kiama,Australia | Registered: Dec 2002
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Lyddie
Unregistered
posted
I have had the same symptoms for a few years. Amitryptilene (also known a Elavil), which is a trycyclic antidepressant, can help w/pain like this.This does not mean that you are depressed; this drug afffects pain receptors. The other drug used is Neurontin, often iin pretty high doses.
Is your burning or numbness affected by hot water or hot sun? Or any other factors?
posted
Neurontin and Elavil (amitriptylline) do work well for nerve pain (neuropathy, neuritis). This was the final chronic symptom that made it impossible for me to work any longer. Incidentally, I just began Mepron about a month ago, for babesiosis, and I'm up to 2 tsp a day without problems -- how many people get CNS symptoms on Mepron? I do need to stay on it, and I'm not liking what RECIPEGIRL says!!
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Gran...
Before you freak out about the steroids talk...
Normally they are not advised for folks with Lyme. We need to avoid being treated with steroids vs. antibiotics when at all possible.
However...
It IS ok to take them on a rare ocasion if prescribed by a LLMD... as long as you are on antibiotics and it isn't a long term thing just given for no good reason.
I see that your throat/lips were burning... which could indicate an allergic reaction... in which case steroids are needed... short term.
And it is possible this is a bad herx especially if you haven't felt this recently and it is "deep down" inside.
I ended up in the ER due to this pain .. and it was horrible... day after day. I thought I would lose my mind due to the pain.
Are you on doxy or Biaxin? Just curious as to what drugs you are on. If you backed off them for a few days... I think you would find the pain lessens. I do.
But don't do it unless advised by your doctor. OK?
Oh.. and where it burns.. and in other spots.. watch for a Lyme rash to appeear.. just in case.
posted
Thanks to all of you. This pain is the worst i feel like someone has drilled a screw in my hip the size of my fist. then it moves down my leg and back.
The predisone is only for a few days. I go on ramphin next. I have been on quinine and clyndimicin for babs and then ten days on ceftin Rotating back and forth for two months.
NOTHING seems to help it im so tired from no sleep. Last night i took two darvocet and it made me groggy but nothing else.
I am trying what kathy said really watching taking absolutely no sugar at all.
I feel like my stomach is an acid pit trying to take the vit c now.
I feel like my leg is out of socket but its not. Keeping a heating pad on it. Tried ice to once in a while.
I also was terrified about the predisone but this isnt a long term thing and i will be back on abx.
I had a bout with this the first of last month now two weeks later here i am again. Hope this dont keep up. Cause i feel like just giving up on all treatment about now.
But i know this is lack of sleep and pain talking. I can see how some of you ended up in the hospital with this. I know my Gp told me when i told her about the numbness to go to the emergency room. BUT with no insurance i will have to be dying to go.
Figure they will just give me pain meds and send me home and pop me with a six hundred dollar bill.
I am taking mag i only take three maybe i need to increase that. UGh i nearly gag now. If however it will help this pain i will do what i got to.
Sounding like a big baby today ugh and that makes agravated with myself to. Trying to be strong here.
Thank all of you for you kind words and help. Sometimes its just nice to hear others say how it was for them.
posted
Where do you get lavender oil? Wonder how that would work but i wont complain if it helps im desperate.
Im not on any abx for lyme or babs the doc took me off last week when this mess started. Only thing i have now is this predisone. Only six days worth.
Thank all of you for your support and ideas. This is one horrific ride that never seems to end. I keep telling the arcade operater to let me off but guess hes not listening to me.
posted
Pain in the hip that radiates down the leg? Sounds like sciatica - SOMETHING pressing on the sciatic nerve - some of the worst pain a person can experience - do you have a herniated disk? If so, you just have to take pain meds (if you're lucky enough to have a compassionate doc who gives them) until you determine what can be done - sometimes physical therapy, sometimes back surgery (which has come a long way). I had this in the mid 80s to early 90s like a damn toothache going down the side of my leg and my foot was cold and numb. PT helped it go back in place, also anti-inflammatories. Was I ever lucky. Then it flared up again this summer - and it's sickening. I just hold out hope that it will resolve again, too.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
Graneet, Try ascorbyl palmitate instead of ascorbic acid, with l-Lysine and proline (amino acids) in higher doses it is good for the vascular system and muscles. DON'T stop taking your magnesium! Maybe even increase the amount. Hope you feel better soon...been there recently.
------------------ ~*~ Carole ~*~ Now Grandmother of 4, as of Jan. 18, 2004! ITSA BOY! 8 lbs. 3 oz. and 21 inches long!!!
Posts: 140 | From Morristown, NJ, USA | Registered: Jan 2004
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I'm kind of slow tonight; sorry I didn't reply earlier.
Listen, don't worry about Mepron. I believe my liver was probably toxic & not metabolizing Mepron properly.
I can take Zithromax fine, but when you add other strong meds, then it gets comlicated for me & the liver.
I kind of think it just built up to toxic levels. Also, my nerves are better with Lyme treatment, but they're still pretty much cripsy fried.
My lab results for the liver are normal, but many times liver problems don't show up until much later on according to my pain doctor.
I just wanted to reassure anyone taking Mepron or about to go on it that they'll probably do fine.
I fully expect to do more Mepron in the future because after stopping it completely, I began to see the good results it brings.
It is very calming. I never noticed this while on it, but only when I stopped it did I see the good results.
It helped my fine tremor of the head (essential tremor of head & voice) & I only took 2 bottles.
I just blindly took the Mepron; didn't have any instructions as to taking breaks between bottles.
I didn't realize it goes to the brain. I also had severe, weird depression with it because it was probably working.
I developed a new, severe neuritis in my right leg. It also threw me back into my old pain patterns because it turned on all those nerves in my head & left ear.
I was crying with excruciating pain & thought I had totally relapsed. I can only do so much "pain" now days----I've had enough pain.
Only now do I understand the importance of being treated for Babesia if you have brain symptoms. (Of course, Bartonella also causes brain symptoms, too)
I still have a long way to go to get well and basically the co-infections are still a mystery for me. But I'm learning.
You've probably seen the MEPRON BUDDIES REDUX thread. If anyone reading this wants to know about Mepron------that's the place to go.
Hope that helps a little. Let me know if you have any more questions, I'll be glad to help.
Take Care, Jan
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I get lavendar oil in the health food store. Call before you go to see if they have it.
I use essential oils... much better.
I also use a product called Avalon Organic Botanicals Therapeutic Lavender Hand and Body Lotion... from Health Food store.
Ask if they carry the Tei-Fu oil when you call. Works better... but lavendar may help too.
Or.. send me your address and I will send you some!!
posted
Thank all of you for your great advice. I am wondering to about a disk problem.
BUT I GOT SLEEP LAST NIGHT oh how wonderfull it felt. took one predisone and two darvocet instead of one and one a few hours later which did nothing. And when the pain eased this old girl slept and i felt so much better today the pain eased most of the day. I babied it and layed around not much sitting. Hopeing if its inflamed it will go away.
I read that siatic will act up for about a week half to two weeks. Which is about how long these two bouts i have had have been.
But hope this dont ride around twice a month. Docs are not to willing to had out pain meds. Nothing hardly touches it at all.
Thanks so much tincup for offering to send me some lavender that is so sweet. Im suppose to go on Ramphin soon as i go get it and i will be sure to try out the lavender oil.
You all have been great thank you so much. graneet
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