I am beginning to realize that I have probably been infected for years.
I am struggling with pain; I use crystals, meditation, warm baths, sometimes walks.
What pain medications work best with Lyme pain? I am currently taking Endocet (oxycodone) 10/325.
I only have 30, as my NP is getting "funny" about treating me for pain now
I see a supposed LLMD (not on your list) Sept 23 but I am scared of a month of pain.
They took me off antibiotics for now, and did a new WBT.
I have tried reading through the threads to find specific information on pain pills.
Please forgive me if this subject is covered in a thread already.
Love and light to all~~
Posted by dmc (Member # 5102) on :
some like Lyrica, some take neurotin & some take Vicoden, Percocet, and other narcotics.
You gotta go with what works for you. So only your doc & you can pick ones to try.
Unrelenting pain hampers the healing process. Some people find anti-depressants such as Cymbalta can help.
Good luck in finding your body's pain management.
Posted by ChristieL (Member # 27786) on :
Thanks for your reply~
Percoset is what has worked best.
I have not tried Lyrica. I cannot take Neurotin, did try that (for what they called neck pain ha).
I have my fingers crossed.. I am emotionally so much stronger since finding this site.
I thought I was alone~ I was starting to think I was crazy, but the more I read, the more I KNOW.
I have had "symptoms" for years, but every visit the dr would say it was "nerves" or this or that~
Thanks so much for your reply.
Posted by Lymetoo (Member # 743) on :
Did this doctor come highly recommended by at least 3 happy satisfied customers?? (my usual "line"!)
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by ChristieL: I see a supposed LLMD (not on your list) Sept 23
Lymenet does not have an official list, but many individuals here have them. I agree with Lymetoo.
For pain, coffee enemas and epsom salt baths helped.
Turmeric is good for inflammation.
If I still had unmanageable pain, I took three Advil. If that didn't work, then I'd take a Norco (like Vicodin, but less Tylenol and more Hydrocodone).
I only tried to get the pain to a manageable level, unfortunately, you can't get rid of it all. Posted by Keebler (Member # 12673) on :
- Many pharmaceutical drugs used for pain or sleep can stress the the liver and kidneys. With lyme, those systems are already stressed. It's important to keep that in mind. Many of these drugs can also be toxic to the ears.
Since acetaminophen is very hard on the liver, ibuprofen can be hard on the kidneys and NSAIDS can be caustic to the lining of the stomach, there are many other things to consider that help to relieve pain.
A gluten-free diet is top of the list. Good sleep, too. Lots of options in the threads below.
Massage, warm (not hot) baths in epson salts can help.
GINGER Capsules can be a huge help, as can adding MAGNESIUM & TURMERIC capsules. These all have literature on how it helps relieve inflammation that caused pain.
LIVER SUPPORT is also vital to help relive pain as pain is often due to liver damage and stress. 3/4 of the way down page one in the thread below, you will see that.
Specifically for LYME patients - lots of details about ears and what can help:
[ 08-27-2010, 08:27 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- You said:
" . . . see a supposed LLMD (not on your list) Sept 23 . . .
Are you absolutely, 100% certain, that this is a ILADS-educated tru Lyme Literate doctor?
What kind of recommendations do you have?
Have you had a telephone informational interview with this doctor to determine if they have the needed education and professionals affiliations?
Most doctors - or their office manager - will talk to you for 5 - 10 minutes by phone to give you some idea of the background and the guidelines they are familiar with.
How may lyme patients have been successfully treated?
How long will this doctor follow your treatment? -
Posted by Keebler (Member # 12673) on :
- When your WB test comes back, keep this in mind: not all labs do the test correctly or test all the necessary band. An excerpt from Dr C's Western Blot explanation:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts: ------------
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
. . . ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007). . . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation. . . .
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . .
- Full article at link above, containing MUCH more detailed information.
======================
You should also be assessed for other tick-borne infections. Lyme rarely travels alone. You should first be examined by an ILADS-educated LLMD. Then, other tests may be ordered.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
- It is important to familiarize yourself with the self-care guidelines so that you can discuss questions when you see your LLMD. Many of the self-care suggestions will help to address matters of pain.
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
MAKING THE MOST OF YOUR LLMD VISIT -
Posted by mtb666 (Member # 16224) on :
Very much agree with the liver stress issues. I was on narcotic pain meds for over a year before my MD cut me off (prior to me finding a LLMD), then I discovered several natural products and therapies that worked just as well, if not better, without the toxic side effects.
1) Acupuncture - fantastic results, albeit short term at times
2) Bowen Therapy - excellent results, especially if you're primarily sedetary. It works by releasing the fascia, tissue that is "stuck" to your muscles, a source of a lot of pain.
3) Zimosine - for joints
4) Celadrin - for joints
5) Infla-profen by GAIA Herbs - second best, works as well, if not better, than ibuprofen, which in my case relieved my pain even better than any narcotic, but ended up destroying my GI tract (can't take it anymore).
Lastly, a new product called Cobroxin is available in CVS, Walgreens, Rite-Aid, and some grocery chains, plus multiple online sources. It comes in a topical gel or oral spray, and almost works TOO well - it blocks pain receptors - sometimes I'll over do some activity because my body isn't getting the signals that "hey, this is starting to hurt, stop!", and wake up the next day sore as hell. Most of the time my CFS kicks in before I reach that point though, so I stop from exhaustion before overworking a muscle group.
Posted by ChristieL (Member # 27786) on :
quote:Originally posted by Keebler: - You said:
" . . . see a supposed LLMD (not on your list) Sept 23 . . .
Are you absolutely, 100% certain, that this is a ILADS-educated tru Lyme Literate doctor?
What kind of recommendations do you have?
Have you had a telephone informational interview with this doctor to determine if they have the needed education and professionals affiliations?
Most doctors - or their office manager - will talk to you for 5 - 10 minutes by phone to give you some idea of the background and the guidelines they are familiar with.
How may lyme patients have been successfully treated?
How long will this doctor follow your treatment? -
1) He has published a study with my plastic surgeon (not related to my lyme of course) and my plastic surgeon is amazing,
if he trusts this dr. then I feel to trust him. 2) When I called; I was put through to the nurse. I asked if he was LL.
She said yes. I asked if he believed that Lyme can be chronic, and can be long term therapy, symtoms etc.
She told me that he specializes in treating people who have contacted lyme disease and are unresponsive to the general md guidelines
for treatment, that he is aware that lyme has chronic, severe symptoms and that many people who finally come to him realize
that their diagnosis came way after the original infection. She also stated that lyme disease is often a mulit or
co infectional disease, and that there are many contradictions in treatment,
and therefore it requires extensive knowledge. She did not list any credentials.
I figure I am going to call the closes LLMD on Monday, and make an appt for after
I have no medical insurance. The office told me not to worry, that they want me better. that lyme is a long term recovery and process and as long as i can pay $50 per month not to worry about the money.
I can only hope he is LL, and perhaps help me, and then I can help others.
He also treated a friend of my friend's brother in law. He swears this is the ONLY dr that listened and helped him to feel better.
Posted by ChristieL (Member # 27786) on :
Thanks for all the information.
I need to read so much...
I am working my way through, it will take a while so maybe it's a good thing my appt is weeks away.
I just hope I am not to bad.
I hope actually my THIRD lyme test is positive because my NP said she can't really treat me for something she doesn't know I have.
I love her to death, but she is just totally LI <sigh>
Posted by onmyway (Member # 17607) on :
Opana Er is wonderful for helping control the pain and has a lot less addictive qualities.
It has been a life saver for me and then there is Percs or Vicoprofen(great for joint pain) or something like that for Breakthrough pain.
I have a pain specialist and he watched "Under Our Skin" for me so he understands the severity and the ups and downs and how one month can be okay and wihthin 2 weeks I am miserable.
He has also provided lidoderm patches for nerve pain in my back so I can sleep and he aslo wrote a script ofr a lidoderm/Keta/Keto cream and it works absolute wonders when I rub it on my thighs if they are burning from nerve pain or my ankles. He thinks outside the box. That is why I love him so much!!!!
Oh yeah and lidocaine shots help with headaches within minutes of getting the shots! Okay I am done!
Best of luck with controling it. My well know LLMD said it needs to be controlled so your body can work on healing itself!
Posted by sixgoofykids (Member # 11141) on :
Your doctor sounds promising. Familiarize yourself with what various meds do and with the ILADS treatment guidelines. I personally would give him a try. Then if it doesn't seem right or he wants to stop treatment early, then I'd switch. Or if the treatment doesn't seem to be addressing everything.
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I agree with Lymetoo.