I am just wondering if anyone fighting this for at least a few years hasn't had much change in pain. The only way to explain it, it feel like my nervous system is on fire.
I have had neuropathic, excruciating pain levels, widespread, quite literally head to toe. Some abx have given mild temp relief, but nothing substantial.
It is so bad that changing abx now just immediately flares the pain to intolerable levels. Instead of progressing steadily, I don't seem to be and it is literally sickening to me to have to live at a 9-10 pain level almost constantly.
I can even have more INTENSE pain flares that are so bad all I can do is get in a ball and cry, I wonder how much more a heart can take dealing with pain levels so high this long.
I feel like I am alone in this, like I am the only one with reaming widespread pain for years as my main symptom. I wouldn't wish this misery on my worst enemy.
Tried all pain meds on the planet nothing relieves it.
I have even wondered if all these years I am misdiagnosed w/LD...but I have been tested in everyway, CT scans, MRI's, blood tests for just about everything and the only thing positive consistently is LD.
It makes treatment now impossible...I feel like I am at a dead end. I just don't know how to deal with this anymore.
Thanks for answers in advance.
Posted by painted turtle (Member # 7801) on :
Lymebytes,
Unfortunately I know what you mean.
The pain for me was not the most pressing symptom during diagnosis back in 2005. I was under an encephalopathy so my symptoms were mainly, well, too much to try to explain.
Although I have had the shooting pains through the years leading up to the diagnosis and did have some.
But, it was the treatment that seemed to make the nerve pain worse, at least in my memory, which well, is also a bit shaky at this point.
I have trigeminal neuralgia and nerve pain all over, as well as joint pain. It's ruthless. I try not to feel much about it anymore. I don't remember life without pain and I don't remember what it is like to not have face pain. I don't know that I even remember trying to get pain free. I don't want to accept this as how it will be for the rest of my life, but also, when you don't remember life without pain you kind of forget fighting to get it back!
Anyway, just wanted to say, I know what you mean.
Posted by sickpuppy (Member # 23846) on :
lymebytes I'm really sorry to hear about your near constant pain level. I've had constant nerve pain in my feet for over a year, get migraines where the bones in my face feel shattered, plus various other non nerve pains BUT nothing compared to a nervous system on fire.
I wish I knew how to help. All I can think of is maybe try a new LLMD. Not sure which endemic area you are from but in my research I discovered a neurologist in CT who looks interesting. If you're interested, please PM me.
Maybe it's time to do the kind of mind imaging stuff people do. The Open Center in NYC has courses that may suit--if you're in that area. Have you been to a pain management specialist? I don't know much about it--if they would be lyme open--but it might be worth a try?
best regards, sp
Posted by timaca (Member # 6911) on :
I have nerve pain too....full body, burning, sparking, crawling, shooting nerve pain. Mine has lessened. I've treated both viruses and bacterial pathogens. Check into HHV-6, EBV and enterovirus.
Best, Timaca
Posted by MDW005 (Member # 22706) on :
lymebytes,
I'm so sorry, I truely understand your pain.
I have the same burning pain head to toe. If it was only in my little toe I could tolerate the pain, but not so lucky.
My pain has been with me For almost 2yrs, and finally diagnosed in Oct.2009
I begged for death. Please hang in there, I wish I had an answer for you.
Posted by TerryK (Member # 8552) on :
I had severe overall body pain 24/7 for 9 long years.
IM ceftriaxone helped tremendously. After 6 months off ceftriaxone the pain started to come back. That is when I figured out that inflammation seemed to be at the root of much of my pain issue. As long as I stay on top of the inflammation, the pain is kept at bay. Not gone but bearable.
My SED rate is elevated sometimes and my C-reactive protien is elevated. I don't think anyone would look at my SED rate and think that it causes the kind of pain that I had. My point is that the SED rate would not likely be a good marker.
My doctor considers high levels of kynurenine to be a marker for high pain. My kynurenine was high and so was my pain.
Kynurenine is a metabolite of tryptophan and from what I can tell is associated with immune system activation and inflammation. It actually helps to keep inflammation down. I'm not an expert or a medical professional but I personally think that keeping inflammation down is a key to keeping pain under control for many chronic lyme patients.
When the bugs die they die in the tissues and cause inflammation. Inflammation in the tissues seems to cause a lot of pain for me. I try to keep detox as a major part of my treatment and I use herbs and supplements to control inflammation. This makes a huge difference for me. Without those things I would not be able to tolerate treatment.
As far as the overall burning sensation. I used to have that really bad from head to toe. I found that *for me*, it is related to a sulfur issue. I cannot tolerate much in the way of sulfur based supplements without the burning coming back. I have the CBS upregulation problem which was uncovered with methylation cycle testing. You can search the archives here for more info about methylation.
To control sulfur I must keep sulfur based supplements to a minimum. Some of them are MSM, ALA, NAC, glutathione and there are many more. I was taking a lot of these before finding out about the sulfur issue. I also take molybdenum and a sulfur detox liquid called sparga made by nutrimedix to help my body keep from making toxins due to the sulfur problem that I have.
You may have to try different things to find out what works for you because I don't know that what works for me will work for everyone however I do think that many of us have inflammation causing pain.
Terry I'm not a doctor
Posted by maps (Member # 19758) on :
Lymebytes, Oh my you are me.
It is so draining that I have become housebound.
The last week I have been taking 1 tylenol three with 1 lorazapam early afternoon and then lay down. The pain does not go away but does become managable so at least when I get to the end of the day life is not so totally unbearable.
I have not been able to stay on any antibiotics for longer that about six weeks. I just finished 5 weeks of suprax and the nerve pain level went through the roof.
The tinling turned into horrendous pins and needles all over and my whole abdomen would contract. I searched on abdomen and nerves and it came up with Autonomic Nervous System (relating to the digestive tract - I had all four symptoms) all this time I have been thinking that my digestive system cannot tolerate antibiotics even though I never had and diareah.
TerryK: I think I love you, INFLAMATION, what a brilliant piece of information for me. I have been thinking herxing (did not seem to fit) then I thought the bugs in my nerves dying but inflamation never crossed my mind. Thank you so much.
I am starting a new path, March 9 I will have a pic line inserted. I go back to the docs office for the first treatment and then I get a nurse that will come every day for as long as I need/want. This is such a relief to know that someone will be here to help.
I have ordered three books from amazon: Healing lyme by Stephen Harrod Buhner Herbal antibiotics by same as above Lyme Disease Survival guide by Connie Strasheim.
I liked the last book because I have been thinking that I am living my life in this tiny little box and when I previewed the book these words really struck me. Hope I am not breaking any laws by posting this:
Excerpt from "Lyme Disease Survival Guide" "Welcome to the maze! Your path will be different from that of your neighbour, who is also infected with lyme disease, because there's no on single route to take. You might be the mouse (okay, rat) who gets put on a simple train, but chances are, if your illness is chronic, you'll get a winding one wih lots of possible detours and dead-ends. Understand this when you start out. Yes, the path of pharmaceutical antibiotics works for some. Herbs and colloidal silver may be th way for others but don't jump on your neighbour's trail.
You'll take many detours along the way, some leading you to dead ends, others bringing you closer to the exit. The only way to get to the end, however, is by scurrying along and keeping at it though you strength may fail and your heart may get discouraged.
Eat some good cheese (rat food!) and keep your body strong however you can, for the journey is long and trying. You will pass through dark nights when you can't see the path in front of you or won't e able to budge those back legs to get moving, but the sun will come out eventually, and, if you are willing, you'll move forward again.
For some, the finish line will mean only going halfway and setting up a cozy abode inside the walled greenery of the labyrinth and being content to live with some symptoms. For them this is their end and their freedom. For others, it will mean leaving the green wall for good.
You won't know the way out until you run the race, bump into a few walls and miss a few openings in the shrubbery, but if you keep going you'll get there. Determination and a positive attitude are vital. You'll bump into some walls but you weren't born with a tough little skull for nothing.''
Terryk: I am going to find some natural/herbal anti inflamatory and give it a try.
Lymebytes: Thank you for posting this, I really hope that you find something in the responses that will help you
regards maps
Posted by TerryK (Member # 8552) on :
I hope anti-inflammatories help you maps.
Here are some things that I know help with inflammation. There are many more.
Digestive enzymes between meals
Curcumin (recommended by my LLMD office for pain and works quickly if you can tolerate it) It may chelate lead so be careful. I think most people do fine with it.
Pomegranate juice (can give me quick relief but can cause slightly increased brain fog *for me*)
mangosteen juice to some degree but may take time to work
boswellia
quercitin - I can get relief after a week or so of 500 mg per day. Not nearly as quick as curcumin or pomegranate juice.
Pain eze from Rainbow light - it has California Poppy which is recommended by one LLMD. I'm not sure why the California Poppy works because I don't see inflammation mentioned much in relationship to this herb.
Tryptophan may work for some people but please be careful with it since it's possible that it can cause increased quinolinic acid (a brain toxin). Lyme patients may already have increased quinolinic acid. I do.
You may need to mix and match and add other things to get the desired effect without side effects. What works for me may not work for you but it's worth trying different things.
I hope the picc works well for you and you get this beast licked.
Terry
Posted by maps (Member # 19758) on :
Thanks for the information, hopefully some day I will be able to give back on this forum.
regards maps
Posted by sk8ter (Member # 8671) on :
You may have developed into what is called CRPS or RSD. It is a neurological disorder where the nerves are turned on either by an injury or a pathogen. I am convinced that RSD is lyme.
OPiate drugs do not help this kind of pain but NMDA antiagonists drugs do such as Low dose naltrexone protocol, ketamine compounded topical cremes (these are my God-send),Lyrica if you can handle it. Some here have gotten better from treatment others not.
You really need to be diagnosed with it by a doc that is familiar with it. Very few pain management docs know of this and DO NOT know how to treat it.
Go to RSDSA.com or org and that is the national site. Please only go to the doctors on the list they give you. It is like here that only certain docs understand and know the latest treatments.
They really have only started research in this field in the last 5 years and are under a lot of the same pressures that we are. If you PM me your area I can help find a good doc for you or just contact them.
Posted by TerryK (Member # 8552) on :
Interesting sk8ter. I tried LDN for months and it did not help at all with pain. Again, what works for one may not work for another. So glad you are getting some relief.
Terry
Posted by lymebytes (Member # 11830) on :
I really need to respond to each one of you, so I will respond to all of you in one big "lump" here:
I see that many of you can relate to pain. Many LD patients don't have this as a "major" symptom, I have seen them around (in my nearly 4 years at forums) but not at these high levels. In all these years only 3 people I know have described very similar pain levels. It is not my only symptom, but the absolute most disturbing.
I too have begged for death. Of course I prefer a healthy life, but if I am suppose to live this way another 40 years, dear God help me. If ONLY the pain would drop to a tolerable level, if only.
The suggestion of RSD has absolutely crossed my mind, in fact it is described as "SEVERE widespread nerve pain" and the cause is believed to be a "bacteria". RSD symptoms descriptions fit me. Exactly, Narcotics don't help! I have tried them all. Xanax helps the nerve pain, short-lived, but is a couple of hours of some relief.
Yes, I am in pain management and very blessed to have a doctor who is willing to help me anyway possible. Problem is, I don't think they make anything that helps "disease" pain, it is so different from injury pain or post-op pain, which narcotics will relieve some. I have tried Lyrica, not sure if it did anything. I have tried a compounded Ketamine nasal spray they use at a University Hospital in my state for nerve pain patients that was suppose to be so great, it just made me feel sick to my stomach and tired, pain still the same. The Ketamine cream was of some help in the worst areas, but I would need to bathe in a tub of it to hit all areas of pain. Of course anything that begins to help nerve pain is VERY sedating. Just sucks.
Inflammation is a factor for me, a reason they cannot get me off Ibuprofen. I cannot survive a day without it, of all pain meds, it helps a little. Test show inflammation levels have actually has gone down which should correlate with lower pain levels. But either I am not recognizing the pain levels have changed or they just haven't changed. Thank you for mentioning sulfur, I will be on the lookout for that in my supplements. I do take a quality highly concentrated fish oil that is suppose to help w/inflammation.
I have seen 3 LLMd's. One too aggressive for my level of pain, the other willing to be aggressive - but also understanding of my pain, therefore he doesn't push me and I go nowhere. The third simply said, "I am too complex of a case for him" he was an ILADS LLMd too, but fairly new to LD.
I have been tested for all viruses. I had titers when this started (nearly 4 years ago) so high, my LLMD said he had never seen viral titers in that high range. I have been treating viruses as well. I wonder if much of this INSANE nerve pain is caused by the viruses, they "go for" the nervous system and can be painful.
I KNOW that if I could get rid of the LD bacteria, it would help pain levels. But OMG, when I take an abx that penetrates the CNS - I am in for MASSIVE nerve pain. It is so frustrating because what I need cause totally unmanageable pain levels.
I have day dreamed about LLMd's putting me into an induced coma and just flooding my system with IV abx and waking up to feeling better. I honestly don't know how else I would ever handle the abx I need.
Thanks to each one of you for responding, it helps to know (for some reason)when others can relate.
[ 02-26-2010, 08:46 PM: Message edited by: lymebytes ]
Posted by steven (Member # 13101) on :
have you tried rocephin? that helped me against nerve pain (not forever unfortunately).
Posted by hshbmom (Member # 9478) on :
Nucynta and Baclofen have each given a tiny fraction of an increment of relief for neuropathic pain relief.
Posted by MDW005 (Member # 22706) on :
I was on IV rocephin for 5 1/2 weeks and it helped me some, but with all things it came right back in the middle of tx.
I am begining to think there realy isn't much help for this kind of pain.
I hope I don't get cancer or any other disease while I'm battling Lyme , because my nervous system won't allow me to take the medications.
Posted by lymebytes (Member # 11830) on :
Allergic to Rocephin, or so we think so. I had a mild reaction years ago to the Cephalosoporins. I would need to do an abx challenge, my LLMd will not Rx it.
See what I mean? Am I at a dead end or what?
Posted by sk8ter (Member # 8671) on :
So sorry to hear of your pain but I do understand. The Ketamine cream I have is compounded and has 10% Ketamine, 10% Lidocaine, 10% Ketaprofen, 2% Baclofen. Is this what is in yours? Also there is ketamine oral soution to take that you could start low and titrate.
You had mentioned a coma. The worst casse are being put in 5 day comas in Germany and Mexico. Right now there is 20 year Lyme patient that went into full body RSD from it. She had the coma and is still there with complications from the lyme. An incredible story of faith with that family.
There are 3 day out patient ketamine infusions, 5 day in patient infusions also. If you go on Dr. Kirkpatrick's rsd site it can give you a host of info. Dr. Schwartzman at UMASS is the other expert. Cleveland clinic also has good rsd docs as well as here in Los Angeles.
But there are others out there that can help. Where are you located? Many Universities are now doing these infusions and ins is starting to pay with a fight though.
Also I have just started using the new UCLA Longvida formula of Curcumin/Turmeric..and this formula helps with my pain. I was amazed as using the spice have not helped much. This is a different delivery system that they took 10 yrs to develop. They tested it on their Alzheimer, down syndrome, and autistic patients with a marked improvement on pain and inflammation. God Bless
Posted by maps (Member # 19758) on :
That is why i am terrified of the iv antibiotics and hoping i can find something for this pain before i start.
haha, i also thought they should put me out till after treatment.
I have also been wondering if the monoclonial gamapathy is hindering recovery. If the plasma cells are defective how can this help. Also it is very unnerving being checked every three months for multiple mylomas.
regards maps
Posted by efsd25 (Member # 2272) on :
If it a true neuropathy, you may want to consider using acupuncture. If you search Lymenet for peripheral neuropathy, you'll find a good thread for acupuncture and neuropathy.
There have been 2 separate studies( that I can find) involving over 120 people each time. One study had a 50% rate of success the other about 70%.
Hope this helps...Ernie
Posted by steven (Member # 13101) on :