i haven't been to these boards in a long time, looks like there are still such nice and helpful people here.
i have been suffering with lyme since first bitten in 1989 and undiagnosed for 5 years. i am sure i have the same nightmare stories as so many of you.
i am really trying hard to move forward and deal with what this disease has lef tme with, not really knowing if i have active in fection or not, but one of my biggest set backs continues to be the unbelievable relentless pain from periphial nueropathy. it effects my lower legs, feet and hands, but the worst pain is in my feet. espcially the soles and tops. it feels like i am standing on burining hot pavement with someone pouring boiling water down my legs.
i recentley began lyrica,,,75mg 3x day, anyone have any success with this drug or any other suggestions is much appreciated, i suffer severe depression, and getting out and doing the things that help my depression, put me right back in bed with such pain i can't hardly walk...and the cycle begins.
peace,
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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thanks for answering, no, i am not being treated at this time, but i have had YEARS of antibiotic treatment, both IV and oral and also had IV for extended periods of time more than once at my own expense.
last couple go rounds did nothing, although i am a strong believer in extended antibiotic use as i feel it saved me from being much worse off.
the nerve pain in limbs has been with me since my earliest days som 18 years ago, it never got any better.
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sounds bartonella-ish.
I'd get back in treatment with a good LLMD!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Use to have same problem with burning feet. One year of being on the Marshall Protocol cleared up my feet.
I have always heard it is a bartonella symptom.
I have read of a girl on this site that took minocyline which is one of the main drugs used in the MP for a year and her feet pain cleared up also.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
i never tested positive for bartonella, but did for lyme and babesiosis. the periphial nueropathy is not my only CNS symptom, i have had so many and some improved with treatment, it is just my most painful and longest lasting. i tried nuerotin but had so many side efeects, now am trying lyrica.
i am interested in understanding more about why the nerve pain is associated more with bartonella and what the treatment is if anyone has time.
thanks,
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Kathy,
Burning neuropathy was one of my first Lyme symptoms and was the worst for three years until I developed myoclonic movements and tremors which are even worse.
I could not tolerate even a low dose of Neurontin, so I will be interested to hear how you do on Lyrica. One of my Lyme pals with neuropathy does well on Neurontin and Elevil (an antidepressant that helps the nerves) together with antibiotics.
The Lyme antibiotics has reduced the intensity of the burning in my upper body but not in my legs.
I am now on Bartonella treatment. The belief of one of the top Lyme doctors is that if a Lyme patient has numerous central nervous system symptoms, and is not getting better on Lyme medications, then it's often Bartonella or a Bartonella-like organisms. There is a DVD of his speech that you can purchase.
My Bartonella test did not turn positive until I started on a Bartonella medication, then it turned very positive.
We believe my burning and tingling neuropathy, myoclonic movements, tremors, and seizure-like activities may be the Bartonella. However I've had a very hard time tolerating the medication and either had to go off or be on a low dose. So I don't know if we're really hitting the Bartonella, although I'm getting lots of Bartonella rashes.
For Bartonella treatment, the medications are usually Levaquin or Cipro (the quiinolone family) or Rifampin. Often a combo of Rifampin/Zithromax/Doxycycline or some Rifampin/Zithromax, etc. are used. Some of us developed tendon problems with the quinolones so be careful.
Zithromax has some affect on Bartonella, there is some belief that Doxycycline may help. I think some people have been helped with Ketek in combo with other medications but Ketek is very dangerous to the liver.
There is one IV drug, I can't remember, may be Gentamicin. Rifampin can be oral or IV.
I have tried numerous topical ointments, as well as supplements for neuropathy such as alpha-lipoic acid, and nothing has helped me. So I totally emphathize with your situation.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
There are so many kinds of pain associated with Lyme!... I have noticed that some burning in the feet will clear up with a good liver detox program. Have you done a good liver detox with the support of a naturopath?
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I have the same symtoms and have been trying every med to reduce the burning. I have found that treating babesia has significantly reduced my symptoms. Cipro for bart helped a little, but mepron, clandymicin, art and septra protocal has really helped.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Watch the rifampin posts. You may even want to go back and read older ones. We have suspected bart, or a bart-like infection with my daughter. Nerve sensations are one of her most intolerable symptoms. When she started rifampin/zith, she worsened unbelievably. She is convinced it is kicking some bacterial bums around.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
At the end of 4 days in the hospital when unable to eat anything, I noticed a great improvement in the burning, stabbing pains in my knees and low back. Upon resuming my normal diet, the pain returned as before. I was able to narrow my particular problem to a dairy allergy which must have been exacerbating the peripheral neuropathy.
The weakness, numbness and tingling from the knees down remains with no significant improvement, but the very severe neuropathic pain has improved significantly.
If not for being unable to eat for 4 days, I would never have considered a dairy allergy, but the improvement in pain was amazing.
The following website suggests a connection between dairy and pain although I didn't see a specific reference to peripheral neuopathy:
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Adding to SouthernCo's post, a gluten intolerance can cause peripheral neuropathy. Some with celiac disease, who do not have Lyme, do have neuropathy symptoms just like ours. Yet many Lyme patients cannot tolerate gluten.
I have been gluten-free even before I was bitten by the tick and it has not helped in my case, but I'm just throwing it out as an additional thought.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Yes,
I feel best when I dont eat at all.
Yesturday I went to work without eating and to my suprise I had alot more energy and less pain.
Then after lunch it was downhill with fatigue and burning
Posts: 2905 | From New England | Registered: Sep 2004
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posted
thank you everyone for all of your replies and helpful information. i have been on just about every antibiotic combo you all mentioned as well as a couple years of mepron/zithro for babesiosis.
i was MUCH worse off before my family helped pay for about a year of IV antibiotics finally ending up with vancomycin helping the most. i also went to a clinic in atlanta..long BAD story...but more harm than good and the doctor is in trouble with the law.
i had a GREAT lyme doc for years in PA. I love him and believe his determination and care saved me from being much worse.
i have had to have 2 neck fusions, lower back surgery and foot surgery all from the lyme getting in bone marrow, but that has stopped. i had almost every symptom on the list at some point, and some still bother me, but the damn nerve pain in my legs and feet just kills me and i keep hoping with all the diabetic research going on they will come up with something.
i SOOOO feel for all of you who also have this horrible nerve pain and will let you know if the lyrica helps. i live and work on a horse farm and being active is almost impossible now. i hate what this disease has taken from me. i am sure you all feel the same.
i also suffer severe depression, but that is another thread. i will ask about that elsewhere.
thanks, i know you are all brave, though people...you have to be
peace,
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I have to wonder if you might be getting some nerve pain associated with the back surgeries.
Have you tried cranial sacral therapy? Sometimes that will help relieve nerve pain associated with spinal problems.
I hope you are able to put the pieces of this puzzle together and get some relief really soon!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Yes, kayru, my mother is on Lyrica, and she swears by it. She has decided not to treat her Lyme (she didn't like the herxing and weight gain), but just treat the symptoms.
She tried to go off it once, but the neropathies in her feet were so bad, she went right back on.
Hope that helps you,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup my burning spots & neuropathy went away mainly with IV Rocpehin but I ahad some residuals which cleared up on BAbs tx and THEN at last on cipro for presumptive Bart!!! My last burning spot under my left eye and burning feet were Bart!!!
Just to add for anyone reading this thread who is on FLAGYL that FLAGYL can cause permamnent damage/neuropathy so if you get this when on FLAGYL GO OFF FLAGYL!*)!*)! That's all-!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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the nerve pain in my legs was one of the reasons they did lower back surgery. i had spinal stenosis and they felt that opening the area would keep pressure off the nerves. now, it may have needed to be done, but it was just one more missed diagnosis of lyme because the nerve pain only got worse and moved to my arms.
the other surgeries were lyme related...weakening of bones. both neck fusions were after my discs had crumbled for no reason such as injury.
the burning, stabbing pain in my feet and lower legs happened within the first year of being infected, but i went 5 years without a diagnosis. i hope the lyrica does some good. anyone know how long it takes to know? should i feel some relief immediatley, or is it a drug that takes time?
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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Sorry to hear about your problems which sound similar to mine.
Earlier in this string of replies, I detailed the amazing improvement in my burning, stabbing knee and low-back pain by completely avoiding dairy. It cost nothing to try and it worked.
I had been forced to stop eating for 4 days because of acute pancreatitis, and noticed the pain improvement immediately. At first I avoided both wheat and dairy, but was able to add the wheat back in without problems. But each time I tried any form of dairy, the terrible neuropathic pain returned.
Like you I have serious degenerative disk disease such that I was scheduled for disk replacement of L5-S1. Fortunately, I procrastinated long enough that was able to get the Lyme diagnosis before the surgery.
The peripheral neuropathy in the knees and low-back began immediately after a lumbar ESI (epidural steroid injection) about 4 years ago. The burning, stabbing pain was bad enough to wake me up daily at around 3AM.
Like I said this cost me nothing and helped more with the pain than any Drs. or medications. I still have numbness, tingling, and weakness from the knees down (probably permanent nerve damage), but for about 4 months the neuropathic pain has been gone.
Posts: 175 | From Colorado | Registered: Feb 2007
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i don't eat dairy now, or very little if at all, but sounds like it is worth trying. i was already on lyme treatment when my discs had to be fused, but i guess the diagnosis was too late for the antibiotics to stop the degeneration. one of the discs crmbled in my neck so bad the surgery took hours and they found chips of the disc behind my shoulder. both times, the numbness improved in my arms, but the burning pain in my feet began 17 years ago and seems unrelated to any of the back issues. thanks for your suggestions and help. sorry you have so much pain too.
kahty
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
After years of treatment my feet still burn after I eat.
I dont know exactlly what it is.
Today I had some chicken fingers almonds and broccoli for lunch with a cappacino,
no sugar.
40 minutes later the burning pains started along with weakness and tiredness.
Why still this burning and weakness after eating?
Posts: 2905 | From New England | Registered: Sep 2004
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can't help you there, mine have no pattern except they always hurt more when i am on them longer. i have tried to figure a pattern, but i have a certain degree of pain 24/7. some nights i can't even stand for the sheets to touch my feet and some days i cannot wear shoes at all. other days, i do ok. if i have to stand for any length of time the pain is unbearable.
i have never noticed any change with what i eat or when i eat or if i eat, but it is diffferent for everyone. i feel going 5 years with no treatment and the fact that the burning nerve pain in my feet was one of my first symptoms, that the bacteria just did so much damage to those periphial nerves.
my pain is directly related to how much i do which is so frustrating as i have been an active horse trainer my whole life and riding instructor. i did not work for years, but am beginning to do a few things again and the pain just increases. i thought it was better for a while, but it was just because i wasn't on my legs as much.
i am hoping the lyrica will help.
peace, kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
lyrica does take the pain away but its temporary.
Muscle relaxers also helped the pain, but again it stopped working after a couple of months.
So I best AVOID the foods that do this.
I just had a roast beef sandwich on rye with mayo and my feet feel like they are on hot brocken glass. Very painfull.
What did it? The rye bread and the small amount of vinegar in the mayo.
Uhhhh!!!!!!!!!!!! The pleasure was not worth the pain.
This disease really makes you transform spiritually.
Posts: 2905 | From New England | Registered: Sep 2004
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
Hi Kathy, I remember you
I'm glad to hear you're somewhat better than before! I talked with you several years ago when my discs slipped and you weren't doing well at all. You were VERY helpful, thank you
I got rid of the lyme and still had bone pain and meningitis- & so perephrial nerve stuff.
Then I got treated for presumtive bart as well- 4 months of 500mg zith plus high dose rifampin.
I also added in 400mg doxy per day without telling my doc as I was afraid of meningitis. Then found that while zith doesn't show in spinal fluid it IS found in brain tissue- so it does cross the bbb.
I'm pretty sure I got rid of the bart. My bone pain is still here but not nearly as bad. I expect it should keep inmproving over the next year or 2. I rode a horse the other day for the first time in well over 10 years! Just at a walk, but still...
For me I think most of my bone stuff was the bart. And a lot of the nuero stuff was bart as well. I still have bad arthitis though.
I'm now on babs therapy. I hope it helps my energy level.
I think you might want to look into bart tx.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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so good to hear from you, it has been a long time. i am glad some of your treatments have helped. i spent so may years on iv's, orals, mepron, etc. i am unsure where to go now but will look into the bart. since i had the nerve pain from the very beginning, i am not surprised it stayed. it had all those years to get into my cns.
do you still have any disc issues? i can't believe iv treatment stopped my discs from crumbling..but it did...i still have lots of neck pain and stiffness, but not surprising after 2 fusions.
so good to hear from you, it has been a long time. i am glad some of your treatments have helped. i spent so may years on iv's, orals, mepron, etc. i am unsure where to go now but will look into the bart. since i had the nerve pain from the very beginning, i am not surprised it stayed. it had all those years to get into my cns.
do you still have any disc issues? i can't believe iv treatment stopped my discs from crumbling..but it did...i still have lots of neck pain and stiffness, but not surprising after 2 fusions.
My miracle drug for those awful symptoms is biaxin. I'm just on it again and reminded of how great I feel on it. No other antibiotic I have taken will reduce or eliminate the symptoms, biaxin does.
Try it for a week and see, or have you already?
Posts: 69 | From Washington | Registered: Jan 2007
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yes, i was on biaxin for quite a while, but it was years ago. i am not on any treatment now. i did so many antibiotics both IV and oral for years and also mepron for babesiosis. i also did a clinic in atlanta with lots of experimental stuff along with aggressive IV's. i feel like i am probably dealing with symptoms i am left with from years of being undiagnosed and then more years of poor treatment.
i am trying to regain some strength and get my body in some shape if i can, but the nerve pain keeps setting me back and i just have never been able to beat it no matter what i do. i am hoping the lyrica will help. i was even on oxycontin for the pain and it was the only thing that helped but i had to get off of it. it is a scary drug and i found it addicting so quickly.
i hope the biaxin will help you. i hate that so many others know the nerve pain i am speaking of. i guess it is suppose to feel good not to be alone, but i don't wish this type of pain on anyone at all.
take care, kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi there,
Had to respond because of the painful feet that you mentioned.
I'm starting my 2nd month Levaquin 750mg and Bactrim DS 1600mg every day. Will go for 3 to 4 months.
Tried 2 months but wasn't long enough for the Bartonella that I have.
My worst symptom is my very painful feet. They hurt on the entire bottoms.
Inserts in my shoes have helped alot and I highly recommend them. Also sometimes I have to get off of them. High heels make them worse.
Also massaging them helps too.
I have some swelling in my hands and feet too and take diuretics for that.
Hope this helps.
I'm not a doctor and this is just my opinion.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 5769 | From Columbus, GA | Registered: Jul 2004
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every bit of info helps. i agree, massage helps. i cannot wear high heels at all any more. ice packs help reduce the swelling and burning sometimes..even if just for a bit.
it is so frustrating when it is relentless and nothing helps. it is a kind of pain few understand except all of you wondeful kind people here.
peace, kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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posted
i just wanted to add that i am so sorry so many of you feel this pain. if their is any comfort at all in understnading i hope some have gotten it by this thread and please...anmyone...email me anytime as i know this nerve pain can drive one crazy.
I know what a burning problem this is because I have it. The pain nearly drove me crazy until my natural path told me to do infrared sauna 3x's weekly. After 2-5 weeks the pain almost went away. It was amazing detoxing.
NOw I am thinking about buying one . Anyone have an extra $15oo.oo thousand around? :-)))))
Hope this hlps,
Love to a
Posts: 88 | From Carnation | Registered: Feb 2007
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posted
Wow Cathy that's amazing! I have an ordinary steam sauna but that doesn't help. It's a shame that those infrared saunas are so expensive.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
I need to chime in here too. The neuropathy is horrible...for me it is in my chest then vaginal/bladder area then down the insides of my legs and finally my feet.
It comes in flares that last up to a week and I have a hard time wearing underwear/shoes or pants. I just lay in bed with a big tee shirt and hold very still.
I believe my spine and major nerves are riddled with lyme colonies. Abx probably just keep them from over growing but they know how to survive.
Since day one of treatment my symptoms have never gotten worse but this is my biggest fear.
I hope lyrica helps and you can give us good feedback on it (I also believe depression and neuropathy are linked.) Hugs, Kim
-------------------- We are spiritual beings on a human journey...
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
OMG, Ive been on BIAXIN for years!
quote:Originally posted by Searching4Answers: I feel for you and I relate.
My miracle drug for those awful symptoms is biaxin. I'm just on it again and reminded of how great I feel on it. No other antibiotic I have taken will reduce or eliminate the symptoms, biaxin does.
Try it for a week and see, or have you already?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Thank you for your original posting. The symptoms from Lyme never cease to amaze me. I was on abx treatment for Lyme for a couple of years and am no longer on them. It's been maybe 3 years since I've taken oral abx treatment. I came to Lymenet to look for help again.
I have a new symptom: burning, stinging, shooting pains that ping pongs from one side of my body to another. It may sting me powerfully on my left breast then go to my right wrist then back to my left thigh and next to my right ankle. It hurts a lot. It burns, it's hot and it sounds like it could be another lyme thing. ugh. My next and lower back have been giving me a lot of trouble, too. Has anyone gone through this ping pong thing back and forth? My brain is not firing right either. I'm real fatigued and let's say I am drinking tea and want to add splenda. I pour the splenda outside the tea glass and throw the empty slenda packet in the tea glass. It's so much fun.
I hope the lyriza helps. I've taken nuerontin for several years and it's been a God send. Right now it's not helping though with the stinging sensations I am experiencing. My internal med. dr. recommended going to a neurologist. My chriopractor mentioned going back on abx! My rheumatologist recommends enbrel. I'd like to ask God to elminate all Lyme and it's related infections.
I would appreciate hearing from others on this. You may also email me at [email protected]
Thank you. DB
Posts: 153 | From Texas | Registered: Feb 2001
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Like you, I've known that my spine was riddled with something. 12 years ago, when I told my PCP and a neurologist that I thought a virus was living in my spine, they shoved me out the door to a psychologist. The vast majority of drs. are a malicious and ignorant bunch who need to be taught a lesson on this subject. I just hope I live long enough to see it happen.
I've spent 12 years searching for an answer and probably know more neurology than the average ignorant GP. I found that my lower leg symptoms had to come from damage in the spine somewhere between the L5 and S3 nerves. Those are the nerves which form the main peroneal nerve then branch to form the deep and superficial peroneal nerves at the knees and flow down the side of the lower legs to the feet. My only leg symptoms are below the knees to the feet on the outside of both legs.
When I insisted to have MRIs and discograms, my suspicions were confirmed. I have enough damage in the lower back that the disks should be replaced. Obviously, the symptoms I have reported for 12 years were real.
Finally, a few weeks ago, I found this web site, and received a diagnosis of Lyme from a LLMD. Better late than never?
Why did I have to figure this all out by myself? My insurance co. and I have spent hundreds of thousands of $ for nothing! nothing!
I hope that my experience will help someone figure out their problem a little sooner than 12+ years.
Thanks, Dave
Posts: 175 | From Colorado | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
So many kinds of lyme pain, neuropathy, burning...
I noticed comments about food intollerances and also coffee. Both will make the body acidic and cause some kinds of pain.
If I drink a cup of coffee, which I love, I sometimes fight back by following it with a cup of water and baking soda. Nasty, but it helps maintain alkalinity and reduces the pain in my bladder and legs.
When the soles of my feet hurt, I drink more water, sweat more, use detox footpads, and take a homeopathic liver detox product. It helps.
Pain in my shoulder responds to lymph drainage in the neck, and muscle release.
Between the shoulder blades, and I need a bear hug to crack my back.
Lyme pain seems to be a big jigsaw puzzle, and each person has their own picture on it.
I hope you find some relief!!!!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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i have heard of a lot of people talk about the ping pong effect as you put it. this disease is so bizarre and different in everyone, but so many describe that same burning, stabbing, shooting pains.
humanbeing...i love your signature, it is one of my favorite sayings.
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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posted
The photonic stimulator is an excellent treatment for neuropathy cause by nerve damage.
It is manufactured by Bales Scientific. Google them for more info and for local practitioner contact info.
Treatments in CA run $45 and usually a series of 3 or more are needed but results are permanent.
I had flagyl induced neuropathy, utterly painful, in my feet and it completely resolved.
Posts: 925 | From California | Registered: Sep 2004
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posted
DB- One of the signs of lyme is pain that moves around...sounds like you are having a resurgence of the buggers--my vote is thay you put antibiotics or a natural bug killer back into your regimine---
We are in a lifelong battle with our enemy to keep it at bay.
Dolphin--thank you -sounds like you found something great.
Hugs and happy feet, Kim
-------------------- We are spiritual beings on a human journey...
posted
Db, splenda is not your best choice with neuropathy. Any artificail sweetners mess with the brain, and neurons. Please use sparingly.
Db some of your symtoms are like mine... :0
As far as Lyrica goes, I had found it to be a useful band-aid for neuropathic pain. It may require you to increase the dose over time, and it does can become addictive, and make one feel a bit crazed with higher doses. It will make you gain wt. But it does relieve nerve pain well. These are my reactions.
I found that I needed to wean off Lyrica. I was feeling crazy on it. I decided that I could live with the pins and needles and pain and just take tramadol as needed, and maybe just 25 mg of Lyrica very occasionally. I didn't like the way regular dosing of Lyrica controlled me.
What I did find out though through all this is that I have Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) as a result of so many years of having untreated chronic lyme. Now I'm waiting for my insurance co to approve IVIG...maybe. Please pray!
I hope this information helps
[ 07. May 2007, 01:16 PM: Message edited by: achey ]
Posts: 663 | From NH USA | Registered: Sep 2004
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i am growing impatient with the lyrica. i was on 50 mg 3x a day, now 75 and still no change for the burnign nerve pain. the changes are all negative, i am even MORE tired and am constantly hungry. i know side effects have to be weighed, and believe me, if it helped this damn relentless leg, ankle and foot pain i would consider it, but i don't know how much longer i wnt to be less active and eat more with no results.
i thought lyrica was supposed to be the big breakthrough drug for diabetic nueropathy, that is where all the study $ went.
any thoughts, suggestions? the drug is so new i know few are on it or if so have been for long.
i am so discouraged, ihave tried so hard to get off pain meds but nothign else works.
peace, kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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posted
oh how i wish it were that easy, how do all of you, or those up to responding feel about narcotics to help with nerve pain? i am so upset and confused. one docotor wants me off all meds, says they aren['t really workking and we keep increasing, others say there is a place for long term use...my family...who after 17 yeasrs is STILL clueless is from the generation when pain meds were "drugs" amd drugs are drugs right? i think they would rather i crawl around in pain than to have to admit i was on somethinng.
i have been on vicodin and oxycontin mix with success...but then too much with no success, too little with no success. o guess it is all in the right doctor monoriting it and LISTENING to how bad the pain is. i take ambien to sleep to get rid of the pain for a while but it is like popping candy and does;t even work anymore.
HELP I have a call in to a new pain clinic tomorrow and want to get a good start. i don't want them to think i am drug shopping...but i want to be clear they know i have been aroun a few times and know what hleps.
any suggestions....besides perhaps i should go back to elementry school and learn to spell and write!!!!!
peace, kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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posted
A lot of posts here so this is a hot topic I guess.
I recently went to see a peripheral neuropathy specialist that ran a whole bunch of tests (EMG, MRI, biopsy, etc.). The way I understand it is that peripheral neuropathy is not a CNS manifestation but rather, as the name suggests, a peripheral condition.
An EMG can help diagnose neuropathy as can a series of other tests. In my case the EMG was normal so they did a skin biopsy which showed nerve damage (along with some blood test showing active peripheral neuropathy from what I remember!).
The neurologist I saw did say that lyme can cause neuropathy but he also said that for 30% or so of the people that have neuropathy a cause can not be determined.
I have been treated for bart twice and have done a bunch of oral treatments for lyme but the PN symptoms remain. I remain hopeful that over time the nerves can heal properly.
I hope we all feel better one of these days real soon!
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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all i know is i was a healthy active horse trainer until i got bitten by a tick at a horse show...after the initial rash and stiff neck and fever, my first notable new symptom was burning stabbing leg and foot pain and 17 years later, while many other symptoms have subsided, it is strong as ever.
thanks for your help
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
My nerve conduction test was normal too. My understanding is that tick-borne diseases cause small fiber peripheral neuropathy and the small-fiber variety does not necessarily show up on nerve conduction tests. I'm trying to do this from memory, so I hope I am recalling this correctly.
I have head-to-toe burning neuropathy, have had for over three years, 24/7, so obviously something is irritating the heck out of my nerves, despite it not showing up on a test. I did not have a biopsy for it, however.
I now have tingling, too, which seems to coincide somewhat with my Bart test turning positive.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
I have had a number of medications offered to me to help with the symptoms: Neurontin, lyrica, low dose trycyclic antidepressants, etc. The only thing that I have used so far are lidocaine patches. If you have a particular place on your body then these can work quite well but if it is more widespread then it probably won't work.
I think everyone responds differently so you may have to try a few different kinds of meds and dosages to find what works for you.
As for small fiber neuropathy (and I am by no means very knowledgable about this!), it is true that an EMG does not show any abnormalities (as was my case). But, when they do a biopsy of the skin (taken from the ankle and thigh) they look at the nerve fiber density. There is a range of what's normal and in my case I fell below that range which indicates nerve damage. Funny how less nerves causes pain?!
Anyway, the doctors I have seen cannot be certain that lyme is causing this but so far there has been no other cause determined. I was told that around 30% of case of peripheral neuropathy are idiopathic.
The question that I keep asking, though, is whether or not the damage is reversible. Even if I cure the lyme (if this is the cause) then will the nerves heal properly? I have gotten no definitive answer.
So, I can't be certain that it's caused by lyme and I can't be certain it will ever get better. And so after all these doctors appointments, I still don't know much but I try to remain optimistic as much as I can.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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You mentioned depression. Have you tried Cymbalta with the Lyrica? I think it helps pain and depression.
My daughter's pain dr changed her from neurontin and flexeril, which helped some to cymbalta, lyrica and flexeril. It is not a cure all, but she feels the relief is greater.
She also takes narcotics for the pain when it gets unbearable, to prevent ER visits, and sometimes in order to be able to sleep at night.
Her worse nerve pains have been in her head and she found some relief from nerve blocks.
I hear that some neurologists fresh back from a conference are now going to try to stop the pain at the source instead of where the nerve leaves the spine or neck. I wonder if this might eventually offer lyme patients more pain relief!
Good Luck, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
Last August, I was diagnosed with small fiber and large fiber neuropathy. I was just retested and it's not only gotten a lot worse, autonomic nervous system neuropathy is suspected because they found that I have almost no motility in my digestive system (I lost almost 100 lbs in a few months - no reason found - but they did find the motility issue). I thought that once the nerves die, that's it. The level of neuropathy you have when it stops is what you will live with.
I am scared to death because I am losing functioning in my left leg and arm and in my hands, my mouth, the muscles that you use to laugh and cough (I can barely do either). I have the same pain that you've mentioned here, the stabbing the burning. And the numbness. But another thing that scares me is the problem with bones that you mentioned. I've already had C7 replaced but in the last 3-4 months, my toes have started to move under my feet - they've moved 1/2 inch (left foot), 3/8 inch (right foot). I can't turn my head without hearing lots of loud cracks. My lower back, my neck, degenerative disk disease. And I just found my LLMD. Only one appointment so far and he gave me a LOW dose of Doxy to take for one month at which time he will test me (he uses Igenex). But I'm scared - I want to start this aggressively. I understand what he is doing and maybe it's because of the limitations of insurance...but geez...anyway...
Thanks for all this good information. I've taken notes.
Posts: 18 | From MI | Registered: Mar 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Sometimes I feel so alienated in my suffering, then I read a thread like this one. :-(
So sorry.
My neuropathy had almost gone away, then I started having adverse reactions to every antibiotic out there, and it includes burning feet.
When I quit the antibiotics, burning goes away, but lyme symptoms with no limitations come charging back in.
What's a girl to do?
Mary
Posts: 1029 | From North Carolina | Registered: Aug 2003
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posted
Cymbalta worked great for me until the allergic reaction showed up (I was fine for the first five months, then bam!). But I would definitely recommend it to help with both pain and depression. I think that muscle relaxants help sometimes. I take large amounts of Neurontin and that helps with the adrenaline pain (when I get startled, it's the prickly pain that attacks my body for several minutes afterward...and I startle easily!). I also recommend finding a pain management doc - someone who believes in treating chronic pain properly. They are as hard to find as LLMDs, I think, but they're out there. Unfortunately, most of the pain clinics push cortisone injections, which is a huge no-no.
Posts: 18 | From MI | Registered: Mar 2007
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posted
I have had Lyme for 20+ years. Went untreated for years, then when I was 21, treated just with 30 days of antibiotics.
After birth of my third child (c-sec) my symptoms came back with a vengence and now are worse and can not find a doctor.
I also have had a spinal fusion of T9-L5, about 18 inches of my spine. I continually have the burning pain. It is so unbelievably bad, that I now have had to hire someone to come and help me clean my house and take care of my kids a few days of the week (and we don't make all that much money).
I used to be supermom, now I'm a super DUD! I feel absolutely useless. And the burning pain in so horrible. Since I already had an injury (meaning the surgery) Lyme attacks the weakest parts of your body and since you had surgery before too, my guess is that it's attacking it also and causing you a whole bunch of pain.
I hope to hear more from you to see how the meds are working. Nothing has worked for me (neither diet or meds), but I haven't been on antibiotics to see if they would work.
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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You described something called "adrenaline pain"...when you get startled the prickly sensation lasts for a few minutes? Is that everwhere on your body and does it matter whether or not clothing is covering that part of your body?
Thanks!
David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
Hey Kayru, You sound exactly like me. Five yrs and the burning all over my body remains.
I cannot connect any dots of food, meds only activiity. If I am not herxing, what causes burning is standing on my feet, wearing clothes or anyhting touching my skin.
I do know cold increases the burning.
I was tested and Babs was pos/Bart neg, which means nothing.
Warm baths with epson salts ease the pain.
I also use a foot detoxer which sometimes eases the pain for a few minutes.
I have not worn real shoes sor 5 yrs.
I am thinking about tying Lyrica.
I take 20mg of Elavil at night for pain and sleep. It is not affective for depression at this low dose.
This is the MOST frustating, painful expereince for all of us.
Pain robs your soul and causes us to life thru dark glasses.
I still believe we will get beat Bb and all of it's friends.
Have any of you tried homeopathic, rife, Herbs, Rife?
I know this sounds silly, but I do get confused at what is exactly causing the burning.
Is it toxins, results of the Bb, or what?
If we knew what actually is causing the nerve pain, we may be able to figure out how to stop it.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Things to try:
try to get a book called "nutrients for neuropathy"
google "nutrients diabetic neuropathy"
google "nutrients repair myelin sheath"
these will include many forms of b's, etc, and abundance of omegas.
Myco Medicinals has a nerve regeneration formula, Mental Clarity.
None of these are quick fixes, let alone guaranteed fixes.
But we must try.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I stand behind this post. Sugar and carbs are evil for me. THat is untill I have some better answers. Here I am a year later and all the same symptoms. I have not improved at all this year. Its just more of the same.
quote:Originally posted by lymeHerx001: After years of treatment my feet still burn after I eat.
I dont know exactlly what it is.
Today I had some chicken fingers almonds and broccoli for lunch with a cappacino,
no sugar.
40 minutes later the burning pains started along with weakness and tiredness.
Why still this burning and weakness after eating?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
wow, i am amazied at all the repsonses here. thank you so much everyone for all the input. we need to keep this thread, or another like it going now and then for updates. they are slow researching lyme, but some of us may benefit from the advances being made studying diabetic nueropathy.
i just went from 30mg of cymbalta to 60mg. i am using it for depression and hopefully nerve pain. i will let you all know. i had problems with rapid weight gain on lyrica and swelling in my wrists and ankels, more than usual. so strange how different combos work for some, but i have not given up on lyrica and would put up with a 10 lb weight gain to get rid of some of this horrific nerve pain, but hoping the cymbalta will help. i also take wellbutrin. depression is one of my worst symptoms along with the nerve problems
when i can afford it i am also going to hav some spinal injuections, i went to a new pain clinic and they are not lyme knowledgeable but very pain knowledgeable. we will inject one side which will effect the nerves in my lower legs and feet. ife we get a good response, we will do the other side. this will be a couple months down the road if the meds aren't helping much,
i so appreciate all the repsonses and sharing of this terrible symptom. some of you wound so miserable and i feel for you and hope together we can at least keep the topic going and help each other with all ideas from diet to meds and anything inbetween.
coming here makes me feel sad, i feel like i am not alone, and that helps, yet i hate for so many to be suffering this same thing with so little relief.
i never dreamed so many would keep posting, thanks to each and everyone of you for your help and advice.
anyone else feel they can tolerate pain just about everywhere else better than lower legs and feet? i mean when the soles of your feet are so sore you want to cry just to step on them, there is no way aorund it. for me, once it is triggered, nothing seems to help but getting off of them but it is no cure. my hands hurt a lot too, but they don't have to carry me around. i don't even remember the last time i wore attractive shoes...it's all about comfort.
anyone weraing crocs? i heard they were awesome. i know someone with terrible nueropathy from aids. he wears nothing but crocs, even in the winter. he swears by them. they have a website. crocs.com. every little thing helps and since this thread is so long there sure is a need for all we can do for each other whether it is a comfortable pair of shoes or the next promising treatment.
you are in my thoughts and i know if you live with this pain you are fighters, and sometimes feel alone. feel free to email me anytime.
peace, kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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posted
This is a great thread. I'm learning so much. I suspect lyme with resultant neuropathy, but am waiting to see a LLMD next week. I am praying for a diagnosis so that I can finally start treating whatever the hell is wrong with me.
David, I think I know the feeling that you're talking about. I call it my "invisible ski mask." Sometimes, it covers my entire body, but usually just my face or feet. It isn't exactly painful, but it is nonetheless awful and maddening. I feel like someone is poking me with tiny needles in all my pores, and then the feeling subsdies and is replaced with intolerable itchiness. I spend the rest of the night rubbing a scratchy blanket on my face and howling like some kind of a nut.
I guess this leads me to another question, can extreme itchiness be a sign of neuropathy? For me, it travels all over my body, usually following stabbing pains in my wrists, feet, and toes. Frequently, I have trouble walking due to the burning sensation in the balls of my feet.
I have only dealt with this for only 3 months and I already feel like I'm at the end of my rope. I even begin to fathom how people have suffered through this for years or even decades.
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
i experience the pin pricking sensations all over my body at different times. i try to explain that symptom this way...it feels as if i am standing in a rose bush. if you have ever been pricked by a rose thorn, it hurts and also gives you chills, at least that is how it feels to me. there is no pattern i can figure out for this, but the burning pain in my limbs is definitely made worse when standing and being active.
the type of pain we are all talking of on this thread is so bizarre and hard to explain to doctors. i use words like it feels as if there is a blow torch in my lower legs and the soles of my feet feel like i am forced to stand on burning hot pavement or sand barefoot. it is just like torture at times. my feet will actually turn bright red, so do my hands. sometimes at night i have to stick them out of the covers.
do any of you get a combo of this type of burning pain but also a heavy aching feeling and weakness in your ankles? it is like so many different feelings going on at once, but the relentless burning on the soles has to be the worst.
i just went to 60mg of cymbalta. it is just my 2nd week. i have not noticed the change i was hoping for but it is still too early. my new psychiatrist was just at a convention where they discussed the doses of cymbalta actually being safe to go as high as 120 and even 240 for bad nueropathy. of course this is done slow over time and only in severe cases, but i liked that he was up on the use of it for both depression and pain.
some have complained of weight gain, but i have lost weight on it. i would say my only side effect so far is loss of appetite and slight nausea at times but not enough to stop taking it. i am willing to give it time and slowly increase if necessary. i have read some horrible threads on depression sites about this drug but i believe the people who do well on it are not the ones who come back and post.
thanks again to everyone for their comments and suggestions on this thread. i have learned a lot.
peace,
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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Regarding worsening symptoms after eating: I think I recall someone saying this could be due to neurotoxins in the bile getting re-circulated. Maybe try cholestyramine...
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