hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
My daughter has been going to a pain specialist for about 6 weeks. He recently prescribed morphine tablets, but said he didn't think it will help...that it was just to prove to us that no medicine will alleviate my daughter's pain.
He didn't give my daughter another appointment.
He thinks the pain is due to nerve damage, causing her to perceive pain in an exaggerated way. He believes she's aware of pain from the moment she wakes until she falls asleep.
The LLMD says her pain is from neuropathy...her nerves were damaged by the Lyme disease infection. The only thing that will help her pain is treating the Lyme disease and any coinfections. She also has Bartonella
She's tried Flexeril, Ultram, Ultram ER, hydrocodone, and Lyrica & Lamictal. She tried something that's usually prescribed for depression, but has a pain killing effect.
Her last medicine was oxycodone and finally the fentanyl pain patch. She worked up to a 50 microgram/hour patch and it had no effect.
The pain specialist said she could take more than 50 mcg, but that it probably wouldn't help. He said if he took that much pain medicine he'd be in bed all day...it would practically knock him out.
These medicines don't even scratch the surface of her pain. She's been out of school since September.
What next? We need direction, wisdom, grace, and understanding.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
It sounds like the pain doctor was reluctant to titrate the dose of medication to pain relief. How would he know if a higher dose would not help if it was never tried. Its called titrate to effective pain relief. If 50mcg patch is not providing pain relief then titrate to the next dose.
Most docs will get scared to use "higer doses" of opioid pain medications so I would seek out a different pain doctor who will not give up on her and titrate the dose to provide pain relief.
Posts: 188 | From ID | Registered: Jan 2007
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ByronSBell 2007
Unregistered
posted
I am in here shoes, 18 sick out of school nov. of 2005 and sick as a dog ever since. No pian meds, over the counter, ect. helps at all, sometimes they make me worse!
You are just going to have to start treating...
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I should clarify that I did make another appointment with this specialist in another month. I have been taking her every 2 weeks.
He said she could try 75 mcg at a time, and may be able to take 100 mcg patch, but be careful, because it could knock her out or worse.
There is another pain clinic about an hour from here, but I don't know whether I should try take her there or not. She has to have some kind of relief.
She'll take 2 Lortab 7.5 mg to get some relief...she doesn't get relief from the pain, but it makes her not care that she's in pain. KWIM? It just makes her feel doped and helps her sleep.
The pain doc said 50 mcg is what dying cancer patients get. He thinks she would have at least some response if the narcotics were going to work.
Byron, I'm sorry you're dealing with this amount of pain too. Life isn't fair, is it?
Byron, what have you tried for pain relief?
Doomer, thanks for the advice to get a new pain doctor. This guy was honest with us at our first visit...said he may not be able to help her.
The pain doc said his fibromyalgia patients are his toughest cases. Some get long-term antibiotics and that's about all that helps. Wonder if they're undiagnosed Lymies?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Sorry to hear about your daughter. Be careful, Pain Ducks LOVE steroids & few know how they can adversely effect Lymies.
Out of frustration for her situation, they might indiscriminately suggest steroids for pain without knowing how damaging they can be for Lyme.
Consult with your LLMD, or suggest they do the same if in doubt.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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ByronSBell 2007
Unregistered
posted
I have tried everything for pain relief! I have had every kind of narcotic gien both orally and IV, none up them did squat and they actually hyped me up, I think this is due to my lyme disease. The only things that can touch the pain a little is to try to drink down alot of water with a little bit of lemon juice zqeezed in it, but I have a hard time with this because my lyme has caused me to be chronically nauseated. Also if I can somehow get my mind off the pain, that helps. Watching funny/action movied, trying to see a friend, playing games, ect. Sometime a little oral vitamin c helps. Just mainly water, after I fink about 20 oz. about 45 mintues later I will feel a little better!
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ByronSBell 2007
Unregistered
posted
Forgot to add, I sometimes take 2 mg of Ativan, and it basically drunks me up a little, it makes me not care about anything and helps with axiety attacks I get when I feel rally bad (i wanna break stuff!) and helps with the pain a little, it isn't a pain killer and it is a very very low dose medication.
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
There was a recent study at UC (I think) that found that medical marijuana is the most effective treatment for the pain of neuropathy. It was more effective than any of the narcotics tried. This probably would not be viable where either fo you live, due to assinine laws. But it is viable in a number of the western states.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
If your daughter's pain is mainly from neuropathy, neurontin might really help. I take it daily and at night. Before I took it I was in agony.
I have muscle pain also and take cyclobenzaprine for that. I was taking generic Aleve but have had to stop because of GI problems.
If your daughter has never tried Neurontin, try to get a prescription and see if it helps!
All my best, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Nancy,
Sorry to hear about your daughter's pain. In addition to all the good advice here, I would like to add that acupuncture helped me greatly reduce back pain a while ago. I am now in treatment for lyme, and in the past couple of weeks have renewed muscle pain.
Beyond medication, acupuncture is my favorite option for pain treatment. I hope that you may try it in addition to the other routes. Best wishes for your daughter's health.
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I would give up on that pain specialist and hope THEY are wrong!!!! Doctors CAN be amazingly wrong- I was told at one point I would never have children and I have two! I was in chronic agony from Lyme wihch did not go away until one year orals and 7 months IV Rocephin- took until 9 months IV to have any real *relief*- I hope your daughetrs is like that- deeply entrenched infection- not damage!! Doc F from Columbia says DAMAGE is RARE- heard him say that in person at lecture in SF years and YEARS ago- said he had patients incredibly impaired with demetnia and everything and they would come out smelling like daisies (hyperbole?)(okay they didn't really smell like daisies I mean they came out unscathed!!!)!!! He said he had almost never seen true *damage* even though 9 of 10 times he would find himself expecting it- that abx just brought people back whole eventually- was a great lecture!!!
Many of the things I thought were damage at one point or another turned out to be coinfections untreated- at least they went away with those relevant meds and match the clinical profile-
pain in hands- turned out to be Babs pain in head- Babs "residual" brain fog- Babs fever- Bart sinus drip- Bart slight hearing loss
all that I thought was damage and would never go away but the only tihng that eventually has not gone away is the slight hearing impairment-
I hope the same for your daughter- doctors can be terribly terribly wrong- even LLMDs!*))!!
I hope she gets better- pain is hard. 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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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
1. Is your Daughter still being treated for lyme ? Hope so.
2. Also is she getting Complex B vitamin and cq10 & magnesium, & a good one a day vitamin to help repair borrelia damage to nerves? Hope she is.
3. I know alot of the pain I had is magnified by inflamation Is she getting antiinflamitories I hope so.
Dont underestimate the suppliments they take time but they deffinatly help. And maybe a dose of melatonin every couple of days? its a super antioxident.Take in eveining 1/2hr before bed. Her system seems so overwhelmed toxins ,nerve damage the above will help clean her up inside and repair damage done then maybe pain meds will help?
Iam so sorry for your daughter pain
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Agree that Neurontin works very well for some, but one of the common side-effects is that it can cause a flu-like infection. It did for me.
Also, when I took it about 10 years ago, it caused a lyme-like rash on the back and both arms. I'm guessing, since the Dr. had no idea, that it woke up some bacteria (from cyst form) in the CNS,
I have pictures of the rash which I will show my LLMD at my 1st appt. next week.
Good luck to everyone.
Posts: 175 | From Colorado | Registered: Feb 2007
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Sorry to hear you and your daughter are having such a tough time. Where is your daughter's pain? My 18 yr old is home in the bed in severe pain right now. Her pain has always been mostly in her head and neck, but does have other pains that are overshadowed by the head pain.
We also were told by our llmd that the pain is neuropathic caused from lyme &/or co-inf and that his other patients that are in remission are pain free.
She completed her Babs meds a few weeks ago and had been doing better. I'm afraid this means a relapse. Her llmd said to stop the antibiotics for Bart for a few days, b/c of a herx, but instead of getting better she is getting worse. (I think this latest episode was triggered when she realized she probably won't get to walk at graduation, but will get her diploma when she finishes her work, so she pushed herself too hard!)
I asked for a referral to a pain management clinic, but her primary physician said his patients who go there are so drugged up. My daughter said she would love to be drugged and unconscious, at least she wouldn't be in pain!
He sent us to a neuro who specializes in headache and neck pain. Anyway I am happy with this neurologist (#4). He did a nerve block on her ocipital nerve on the left side of her head four weeks ago. (At the time that was her main pain) Even with this episode of pain, her nerve block is still working.
I'll share what she is taking at this time.
She takes Cymbalta and Lyrica daily.
Plus the vitamins & supplememts.
She was taking malatonin until her sleep cycle got back in odrer, but after reading a previous post will suggest taking it again.
As needed she takes skelaxin every 4 hrs (recently replaced flexeril b/c it stopped working even at 30 mg)
She has a prescription for meprozine (which is demerol and phenegran combined). We originally got the Rx from an ER dr. It's what they were giving her either in shot or IV form. It is for moderate to severe pain, usually takes for break away pain. She can take a phenegran with it.
Her neuro uses phenegran for pain. When we run out of the meprozine this weekend we will switch to 2 phenegrans every 4 hours.
Hopefully we won't end up in the ER this Easter weekend! If so, then maybe I can wrangle another meprozine Rx out of a Dr.
She did try neurontin. It seemed to help some, but she thinks the cymbalta and lyrica help more.
We have had an ER dr tell us that if he took the pain meds my daughter did (in the ER with hardly any pain relief), he would be out cold.
Keep searching! Every person is different. If you feel the pain dr doesn't have any new ideas to try maybe he would refer you to someone he thinks highly of, even if out of town.
Good luck, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A zillion years ago I was prescribed every pain med available for the same type pain... for years on end. INCREDIBLE pain.
But NONE of the meds worked.
The ONLY thing that eventually helped was treating the infections. Wish it was not so.. but that is the only help I saw.
As a matter of fact.. when that pain returns... and it is when I am NOT on antibiotics for a while... that is my FINAL signal saying I need to treat or I am going to be in constant pain.
I just started with Doxy again.. low dose.. and that same pain that has creeped back... is going away now.
Sorry to hear of her suffering.
Also note.. some of the pain meds actually intensified the pain for some stupid reason.
Once I gave up and stopped them.. I was MUCH better. It seemed they worked the opposite of what they were suppose to do... so when taking them the pain increased.. so they upped the doses.. and the pain increased more.. etc.
I do use advil or ibprofen each day to help with joints, muscle pain and reduce inflammation and brain swelling... but it has little to no effect on the nerve pain.
posted
For my neuropathy pain I tool Elavil and Topomax along with the narcotics, they helped more than narcotics alone.
Neurontin was not as helpful for me as the Topomax. They are antiseizure medications and calm the nerves, make them fire less.
Treating my TBIs did help the most. I was in pain management for 5 years and now am off all pain meds. I hope she can find some relief while they treat her TBIs.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Nancy, I am not a Dr so not sure I have much help, but I offer some experience from my daughter. She is 20 currently.
The year she was a junior, she spent it in bed due to lyme/bart encephalitis,and a basket full of other goodies.
Nothing ever dampened the pain until she had IV rocephin and doxy. She went thru the narcotics like candy. She was up nightly with out of her mind spells that were often violent to anyone nearby. She had great despair during this time and a few of her suicide attempts were during this pain.
She recently was at a brain damaged clinic and there is major damage from infection and 2 earlier head traumas. These buggers can cause damage. Ugly damage.
Earlier someone suggested that we take her to a chiropractor/neurologist. I think adjustments were very helpful. The Dr was able to initially clear a visual field problem in 10 minutes and find a balance/motor control issue that all of the other drs had missed.
Since, she has had 3 ect's, and they may have alleviated some of the pain, however it is rarely a major complaint anymore.
WE also discovered mold problems that we never knew existed and saw a dr specializing in neuro toxins. Just now thinking about it, perhaps mold was more of a headache player than I have credited it to be. I think many with a compromised immune system probably have mutiple toxin issues. Just my opinion.
I also believe anyone with these diseases and toxins needs to detox. Gigi has many wonderful posts on this.
Since visiting the clinic, there has been marked improvement in my daughter. There are ways to help a damaged brain, or at least to partially heal it.
You must treat the infections and take probiotics, work on the diet and exercise, avoid alcohol, tobacco and other poisons, get plenty of sun,(when possible) and if needed take psych meds that work on the problems.
good luck. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I didn't mention that my daughter has been off antibiotics since December. She was only treated for Lyme. She was prescribed Cefprozil, Zith, and flagyl when she was first diagnosed in October.
She was finally given a Rx for Biaxin & Omnicef, with flagyl. I don't think this does anything for Bartonella.
Her LLMD really wants her to get a picc line and IV treatment due to her pain and the seizure-like movement disorder, but right now the I'm not up to fighting her over this. She threatens to pull it out if I have a picc put in.
She promises to be diligent about taking oral medication. I think if she saw even a tiny bit of improvement she'd be willing to do whatever it takes.
I talked to her about doing a picc now, then having the summer to do orals. That way she could swim if she felt like it. NO GO.
I'm being treated for Lyme too and don't have the mental or physical strength to argue about a treatment method every day.
She's never tried Neurontin. I'll ask about this and I may show the MD some of the things you all have tried. I'll delete names & other identifying factors, so don't worry.
I bought some good magnesium tablets, but can't find them. Neuro lyme...very frustrating!
LM2...we have mold here too, and our house was a meth lab. We need to test it somehow.
Serenity, I cleaned up my mailbox.
VT...how do I know if our local acupuncturist is a good one?
[ 25. July 2008, 10:05 PM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
hshbmom - Sorry to hear about your daughters severe pain. I hope she finds relief and regains her health soon.
If she goes to an LLMD, you might want to consider high dose Methylcobalamin (Methyl-B12) intramuscular injections, if she hasn't tried that yet. 25mg/ml (25,000 mcg).
There are some experimental studies showing potential for nerve regeneration and pain relief, in neuropathies, and ALS. Burrascano also mentioned it's role in his therapy guidelines, for nerve regeneration therapy for Lyme Disease.
It might be worth reading over some of the following links/studies..
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Mom,
Maybe you want to direct your daughter to this thread ? The only way she's going to alleviate this pain is to treat the bacteria and kill it off. Pain meds are notorious for working poorly on lymies.
My son did fentanyl patches and tramadol, barely made a dent. He gained more relief from hot baths in epsom salts. Keets don't care for heat. Having her do the IV's will speed her recovery and get rid of the pain quicker.
My teenager did 6 months of IV's with little problem. His pain was tremendous and we did all we could but ultimately you have to get rid of the bugs to make it go away.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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