Topic: Has anyone w/prolonged peripheral neuropathy gotten better?
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I was just reading about the Central Nervous System and peripheral neuropathy, which has been my main problem since LD exploded/disseminated like a firestorm in my body after cortisone shots a year and half ago.
This pain of peripheral neuropathy has become impossible to live with and I am becoming hopeless it will ever go away.
I just was wondering if anyone here has had painful peripheral neuropathy for a very long time (this is important) a year or more and actually gotten better and no longer has it?
According to what I am reading when disease causes inflammation of the CNS, instead of repairing it (that is the "normal" function of inflammation - to repair) it damages it instead. Also, when inflammation is prolonged the more damage occurs.
This to me sounds like there is little hope of ever regaining normal neuro function and that a lifetime of peripheral neuropathy is very likely. I don't want to believe this, but it makes sense.
Anyone experienced with this, I would love to hear from you.
posted
Hi, First time that I have written on this Forum. I have trouble with numbness since being on IV treatment for Lyme disease about 3 years ago. On oral antibiotics now, but pain and numbness is getting worse. Also, have Diabetes 2.
Have any of you seen a Neurologists for the peripheral neuropathy? Thanks for any information. Bonnie
Posts: 1 | From N.C. | Registered: Jun 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Re numbness my toes began to be numb and then it spread upwards toward my feet and got all the way up to right under my knees for a long time.
IV Rocephin, 9 months, made them normal again. Also had burning spots and sensations and the pricklies= all returned to absolute normal!!!
Best wishes, Sarah
-------------------- 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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posted
Mine started with an arm injury in 2002. The pain was awful at first, but that subsided, and was replaced by numbness and tingling. I lost a great deal of functionality of the arm.
But recently, about a year and half into the treatment I'm doing, I've noticed the arm is getting better. For the first time in 5 years I am once again able to extend it!
Don't give up. Don't ever give up.
Posts: 727 | From USA | Registered: Mar 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
It is good to hear that there is hope. My pain management Md said any pain that is shooting, burning, stabbing is nerve pain. I had that horribly and Amoxicillin helped it the most! But it has now morphed into this weird "patchy" nerve pain all over the place.
I have never been on IV and it blows my mind, as sick as I was I should have been hospitalized on IV for a month, I swear I nearly died, but was only put on orals!
I use to feel like I was walking on thumbtacks and I would get waves of heat in one of my feet, my whole left side from the shoulder hand, leg and foot were numb and tingling, but again Amoxi helped. My LLMd said there is actual proof that the penicillins do help nerve pain. Maybe I just need more.
But I am just lingering is this painful patches of nerve pain that pop up.
dguy - thanks, I do feel like giving up sometimes, thanks for your words of encouragement, they come at time I have been very discouraged.
Hi Bonnie - Welcome! No, I have never seen a neurologist since being diagnosed with LD. I saw 2 before being diagnosed and they just are so illiterate, I won't go to one, unless my LLMD knew of one that he could refer me to. None I have met understand this disease and realize the bacteria is the reason for the nerve pain/damage. I hope your diabetes is being treated, because this neuropathy can be almost identical. Be sure to visit my website, link below, for lots of info on LD. You might want to post your question in the main forum, where more people will see it, you will get a bigger response there and they need to welcome you,
Thanks to everyone - neurontin here I come I guess.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My neuropathy got a lot better on mino and doxy. I had burning in my hands and feet and crawling sensations along with numbness in my hands, arms, feet and legs and hypersensitivity in my hands. Some of the symptoms would come and go but the burning was constant for a number of years.
I'm only on babs meds now due to liver enzymes and my neuropathy is back at little.
Seadreamer, my dad had severe neuropathy caused by diabetes. Once he got his blood sugars under tight control, the neuropathy got sooooo much better that he didn't need much in the way of pain meds, same with my brother. They both had neuropathy for years. Didn't expect it to get better but it did.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Numbness and tinglingn were my first symptom about 7 years ago. It then progressed to alternating burning pain, and odd sensation that felt like I had a rubber band tight around the base of a limb cutting off circulation, creeping feelings, etc. I tried neurontin and various pain meds with little luck. Topomax and elavil helped some.
I had nerve damage show on the nerve conduction studies they did but with just shy of 2 years of orals for Lyme and Babs I can say YES! It gets better.
I get a random tingle or odd sensation now rather than constant. It is so nice. I am off the medications the neuro prescribed and it is still better, so much better. Night and day better.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
Bonnie, my whole body from my neck down to my toes was once 'on fire' - like a whole-body, 24/7, sun- or rug-burn. I really thought I would go out of my mind. Of all the horrible symptoms that I have experienced, that was the worst.
I've been on 400 mgs doxy daily, 10 mos now. I have only one burning patch left above my right knee, and even that goes away every now and then. Naturally I've had all of the other stabbing, stinging, burning, tingling stuff too, but this was different. I also had the burning/melting wax feeling from knees down - that too is not the same as the patchy burn you describe.
As I said, I had huge improvement in the burn you describe on doxy, and it is now almost completely gone. Hope you will be the same.
Out of curiosity: have you ever noticed a kind of jagged outline of your burning patch? mine is often outlined with a broken, jagged whitish line, almost like an animal bite.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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posted
Bonnie, my whole body from my neck down to my toes was once 'on fire' - like a whole-body, 24/7, sun- or rug-burn. I really thought I would go out of my mind. Of all the horrible symptoms that I have experienced, that was the worst.
I've been on 400 mgs doxy daily, 10 mos now. I have only one burning patch left above my right knee, and even that goes away every now and then. Naturally I've had all of the other stabbing, stinging, burning, tingling stuff too, but this was different. I also had the burning/melting wax feeling from knees down - that too is not the same as the patchy burn you describe.
As I said, I had huge improvement in the burn you describe on doxy, and it is now almost completely gone. Hope you will be the same.
Out of curiosity: have you ever noticed a kind of jagged outline of your burning patch? mine is often outlined with a broken, jagged whitish line, almost like an animal bite.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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Sorry you're in pain. My husband has that. (I have mostly fatigue.) What meds and doses have you done so far? Lorima
Posts: 74 | From MA | Registered: May 2007
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posted
I saw many neurologists & neurosurgeons for peripheral neuropathy. Nerve conduction studies aren't much fun! I had constant neuropathic pain & paresthesia from a spinal cord injury 10 years ago. The tick bites ("Lyme") only added to those troubles.
Both conditions only worsened after all treatments, including IV Rocephin, EXCEPT the Marshall Protocol. After about 7 months, the neuropathy in my left leg completely resolved & today (10 months) much of the paresthesia is gone too!
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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