LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » what do you take for the pain

 - UBBFriend: Email this page to someone!    
Author Topic: what do you take for the pain
ChristieL
Member
Member # 27786

Icon 1 posted      Profile for ChristieL     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am trying to read through so much information.

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 [Frown]

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~~

Posts: 41 | From Springdale Arkansas | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
dmc
Frequent Contributor (1K+ posts)
Member # 5102

Icon 1 posted      Profile for dmc     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
ChristieL
Member
Member # 27786

Icon 1 posted      Profile for ChristieL     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 41 | From Springdale Arkansas | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Did this doctor come highly recommended by at least 3 happy satisfied customers?? (my usual "line"!)

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94381 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
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. [Smile] 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. [Frown]

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
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:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS

OTOTOXIC DRUG LINKS here, too.

=====================


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP - Links to articles & supplements

======================

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24039

Topic: Looking for long term pain management
-

[ 08-27-2010, 08:27 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
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?
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
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:

---------------

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

"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."

===============================

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

=======================

This explains WHY you need an ILADS doctor:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

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 )

IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat ( www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html - Accessed April 6, 2007). . . .

. . . 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.

www.igenex.com

IGENEX

=======================

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:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

===========================

www.ilads.org

ILADS
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
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.

=======================

http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

------------
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

** Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation. **

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages

======================

http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf

LYME DISEASE Considerations in Diagnosis and Management

June 26, 2008 Lyme-Autism Connection Conference

125 pages - Powerpoint presentation

--------------

By the same author as above, Chapter 1 from the book "Insights Into Lyme Disease Treatment"

http://www.lymebook.com/steven-harris

---------------

http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801/ref=sr_1_1?ie=UTF8&s=books&qid=1272566632&sr=1-1

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies

Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor)

==================

http://www.klinghardtneurobiology.com/LymeProtocolOct09.pdf

A Treatment Guide: Lyme and other Chronic Infections - by DKt, MD, PhD

October 2009 - 87 pages

-----------
http://www.klinghardtneurobiology.com/popups/PC1.html

Online Radio Interview

========================

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.

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)- by KS, MD

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

============================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605

MAKING THE MOST OF YOUR LLMD VISIT
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
mtb666
Member
Member # 16224

Icon 1 posted      Profile for mtb666         Edit/Delete Post   Reply With Quote 
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.

Posts: 16 | From maryland | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
ChristieL
Member
Member # 27786

Icon 1 posted      Profile for ChristieL     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 41 | From Springdale Arkansas | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
ChristieL
Member
Member # 27786

Icon 1 posted      Profile for ChristieL     Send New Private Message       Edit/Delete Post   Reply With Quote 
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>

Posts: 41 | From Springdale Arkansas | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
onmyway
LymeNet Contributor
Member # 17607

Icon 1 posted      Profile for onmyway     Send New Private Message       Edit/Delete Post   Reply With Quote 
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! [Smile]

Best of luck with controling it. My well know LLMD said it needs to be controlled so your body can work on healing itself!

Posts: 131 | From Georgia | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.