Lyme arthritis anyone?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/22/2009 4:01 PM (GMT -7)   
Has anyone figure out something that helps with Lyme Arthritis? I would love to find something that not only helps with the pain, but with the

swelling as well. I figure the dis-figurement is something that I will have to just live with - but that's ok.

I've already tried Lyrica & the only thing it did for me was that I managed to have the weight gain thingy work!! I never before carried weight on the

front of my abdomen down to now having a 'pouchy' tummy as well!! EW - ICK!!
~Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/23/2009 12:04 PM (GMT -7)   
Oh PLEASE - would someone share some info on this!!!! This is one of the great big issues for me! If I didn't have so much pain, I could live

much more comfortably. The fingers & toes twisting & disfiguring I could live with.
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/23/2009 1:35 PM (GMT -7)   
Traveler, have you tried celerbex? this is what i was given for arthritis pain and inflation. i have been on it for over a yr now i can tell a big difference. i missed a few days as my Dr. didnt call it in soon enough.

and boy i was hurting so bad till i got my refill. there is some bad sides to it tho. i have to have my liver checked every 3 months. but so far so good.

then there is the possibility of a stroke too. but to me it is wroth the risks.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/23/2009 1:50 PM (GMT -7)   
Hi RD-
Yeah, I have tried Celebrex & a few others over the yrs, but no luck on it helping past a 1 or 2 mo. period.

I also fully understand what you mean by - it's worth the risk, sometimes.

And thank you for answering to my post. It seems like I am the only one to suffer Lyme arthritis, where those regular arthritis meds

don't do much of anything. I have been tested for OA & RA many times over the yrs, and my blood work always comes back

showing no markers. Sometimes I just get disgusted with this stuff!! And I'm having one of those days today.

Like many others, somedays I just want to give up. I get sick & tired of being sick & tired all the time!! Always gives me a chuckle

to say that - but it doesn't take away from the frustration that's stated in that little saying!

Well, sorry for just moaning & groaning about myself - I think I just need to quit writing about this for today - Too negative of a mood.

Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/23/2009 2:04 PM (GMT -7)   
i so understand. i lived with pain for most of my adult life. was told i had RA 20 yrs ago.

in the last 2 yrs i have had at least 6 test run for RA and all came back negative. so just 2 months ago my PCP said in a form i had OA.

now i dont know if any test can show this, but i do know i was never given one. just tagged me with it..LOL

my pain lvl has dropped a lot now i am on both celerbex and gabapetin.

yet i still have both good and bad days. just about a week ago was my first 2 pain free days in over 2 yrs.

how long did you try the celerbex? as i was given it for my knee, it did not help much with the pain there.

but it did totally stop the pain in my left elbow. i have lived with for almost 30 yrs. and it is the only thing i have been given that has done this.

and believe me i have tried em all. pills rubs and even a sleeve w/ rubs. till i just gave up and lived with it. LOL

i hope your able to find relief soon.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/23/2009 2:19 PM (GMT -7)   
It's funny how many times I'm "wowed" by someone else's post of what they are going through. One would think that would wear off after a couple of years!!!

I know exactly what you are talking about though. and yes - there is a test for OA.

I have had tendinitis (sp) around & under my right shoulder blade, as well with it running along the top muscle on the shoulder. Although I have only lived with it for about 16 -18 yrs.

I took celebrex (as well as the others) for about 4 -6 months each. It was a doc in Calif. that ran me through the 'gammet' of arthritis meds trying to find one that would help me.

But, I have had the most help with Gabapentin. It does helps me with the bone pain. I can only take that for a few days up

to a week. I'm a wimp when it comes to bone pain!!! My doc just upped my dosage - 1200 mgs. 2x a day. Hopefully that will help me out a little more.

Thanks RD, for answering my post again! ~
Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/23/2009 2:28 PM (GMT -7)   
Hi Traveler,

I was dx'd with spinal osteoarthritis almost ten years prior to my Lyme/babesiosis diagnosis. My trouble spots are: neck, activity-induced mid-back (thoracic), sacrum, and right-side L4-5. I have only had X-rays, which show degenerative disc disease, disc narrowing, spurs, etc.

I started out with Tylenol #3 for pain on a PRN (as needed) basis, and CELEBREX 200 mg twice daily. After seeing a PhD psychologist who specialized in pain management, I was switched to slow-release CODEINE (called Codeine Contin), then after an injury in 2005, I was switched to slow-release MORPHINE for pain management. For breakthrough pain, instant release morphine. I have been on and off Celebrex over the years, mostly due to side effect concerns such as the cardiovascular risks.

I was finally dx'd with Lyme and babesiosis in January 2008, and have since been trying different oral antibiotic combination's. In Oct/08, I started taking PLAQUENIL 200 mg twice daily, as a cyst-buster for Lyme. This drug is also used for arthritis, and my pharmacist recently said it is being used more and more for osteoarthritis because it seems to offer protection for the joints.

Since antibiotic treatment, and perhaps also since adding Plaquenil, my health improved enough so that I was able to go back to the gym, but most importantly, I have been able to cut my slow-release morphine by half! For breakthrough pain, I use only Emtec-30, which is codeine 30 mg and acetaminophen 325 mg. I also have CELEBREX on hand, and I use it sparingly when my back becomes so stiff and painful that it is very difficult to bend and move. I also use CELEBREX sparingly during a Lyme symptom-FLARE as recommended by my LLMD.

Sometimes exercising and stretching helps my back, but mostly if it starts to act up due to an activity such as dish washing or laundry, I have to lay down and rest it. My neck will always act up if it remains in any other position than "straight ahead" for more than about 3 minutes, and other than trying to do stretching exercises and taking Emtec-30, nothing really seems to help. The discs have narrowed as per the X-ray. My neck is still trying to recover from Wednesday evening last week, when I met a group of Lymies in preparation for a protest in my area (Vancouver, BC -- Wall of Hope).

I hope this information has given you a bit of insight and perhaps help. I don't know what meds, if any, you're taking for Lyme, as I haven't been on the forum for quite some time, but perhaps you might want to look into taking Plaquenil, for Lyme and arthritis.

Cheers!
Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/23/2009 2:31 PM (GMT -7)   
Geez, I forgot to mention that I often use those blue ice gel packs that you put in the freezer. I cover the pack with a triangular bandage, and tie it around my neck to ease the pain and spasm. Or I apply it to the area of my back, while laying down. I have also used heating pads on my back for pain relief.

And, I forgot to mention that I have had shoulder troubles, too. My right shoulder has been surgically partially immobilized (1979) due to five severe dislocations. They stapled the tendon into the bone, and advised against any physio or rehab so that the shoulder would heal partially immobilized. It even affects the whole arm and right hand. My left shoulder has been dx'd as unstable, and I have had rotator cuff problems. I think the imbalance affects my neck.

~Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis

Post Edited (spaztick) : 8/23/2009 3:37:38 PM (GMT-6)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/23/2009 2:41 PM (GMT -7)   
hey Cara,
Can I come live with you & go to your LLMD??? smilewinkgrin smilewinkgrin

I have not been capable of traveling the distance required to get to a LLMD since Dec. '08. So, of course that means no tx for LD & others that I have.

The only doc I could travel to with any real expectations, is 40 miles away & he is only a gp. I'm going to give Homeopathic tx. soon. But, if

that doesn't work for any reason & I have to go back to my gp only, I will definitely ask for the Plaquinol!! So thanks a great big bunch for posting!!

I also want to thank you just for sharing your experience. It still helps to know that there are some others who have gone through this too!

Trav.
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/23/2009 6:18 PM (GMT -7)   
Yes, Traveler, of course you can come to live with my husband and I!! We live in one bedroom apartment in a small high-rise in Vancouver, BC. You can sleep on the blow-up mattress if we can find a place to squeeze in it somewhere. I hope you're not allergic, as we have two cats. Also beneficial to you might be the indoor heated pool!

It was the famous Dr. Murakami who diagnosed me, and he has now retired. But that's why I posted his web site and forum address ~ if you post a question in the Ask the Doctor section, he will answer you! Because he was the LLMD who diagnosed me and initially prescribed the meds, my GP now relies on his recommendations for further and ongoing treatment. He will also communicate directly with one's family doctor, either through his web site or by phone. Without Dr. Murakami, I would probably be either dead or even more severely disabled. So I consider myself lucky and blessed.

I also just posted in the "CFS and Fibromyalgia" thread recently, and I have read your posts there, too. I forgot to mention that I have also tried Gabapentin, and I hated it. It didn't really help the pain, and it did nothing the improve sleep or fatigue. What's worse, I believe it contributed to the "muffin top" I acquired sometime in 2007. Always a fairly thin individual, I have gained about 20 pounds which doesn't look well on my small frame. The weight gain may also be due to perimenopause, or even Lyme disease. Some folks either lose or gain weight with Lyme disease. Now, I think I'd have to starve myself for several weeks to lose a pound...very aggravating.

Where are you from? If your GP is supportive of your Lyme diagnosis and is perhaps prescribing meds, do ask about taking Plaquenil. It carries the very rare side effect of visual problems, which is why you have to have to see an ophthalmologist about twice a year to rule out what is known as "Plaquenil toxicity." The dosage is either 200 mg daily or twice daily, and depends on your weight. Also keep in mind that it does take up to four to six months to see the most benefits. I think I noticed results in about three to four months. Gradually, I noticed that I wasn't reaching for Celebrex or breakthrough pain narcotics to relieve my pain.

Did I ask you where you live? If it wasn't for Dr. M, I would have to travel to Seattle for treatment, and I cannot afford that. I do not own property or such, and I do not have credit cards. So I thank my lucky stars daily for the blessing I have.

Are you currently on antibiotics for Lyme and/or a coinfection. I had to treat "babs" at the beginning of my treatment for 15 weeks, then again for six months most recently. It's a real bugger to try to eradicate.

Love & Hugs,
Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/23/2009 6:29 PM (GMT -7)   
Traveler,

This is a question I've been asking too. I am in pain 24/7. I was never told it was Lyme arthritis but I feel like the pain is in my muscles and bones. I take Tramadol 50mg 3 x's a day but it barely touches the pain I have. It just takes the edge off. If I forget to take my next dose when it is due, I am slapped with excruitiating pain all at once.

The Plaquenil sounds intersting. I may have to ask for that next. I refuse to get on anything stronger right now.

I hope that you feel better tomorrow.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 8/24/2009 6:28 AM (GMT -7)   
Alot of people are reporting good luck with LDN. It is also a very cheap Rx...like $ 30- per month!
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 8/24/2009 12:28 PM (GMT -7)   
My pain got to be so bad that I was bent over like an old lady. And just about everything would not work. I had to get relief so that I could get up and get my kids to school.
I was put on celebrix, it did not work and causes stroke and gave my dear friend a stroke...so I don't advise that one.
I was put on cymbalta and it was a miracle drug for me.
I am cured now after doing alrenative treatments at envita in az. but the drugs that I took helped me function before I got better.
I am off of it now. I was scared to go off of it....because I had always woke up in the morning feeling like I had rolled a car...actually I felt worse that any bad accident...lol
But anyways...good luck.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/24/2009 5:10 PM (GMT -7)   
spaztick said...
Yes, Traveler, of course you can come to live with my husband and I!! We live in one bedroom apartment in a small high-rise in Vancouver, BC. You can sleep on the blow-up mattress if we can find a place to squeeze in it somewhere. I hope you're not allergic, as we have two cats. Also beneficial to you might be the indoor heated pool!
**************************************

Well, Geez!! about the only place you be able to find me would be the heated pool!!!! I have had warm water therapy before (2 x's actually), & it really helped tremendously - until...(duh-duh-duuummmm!!) traveling the 80 miles 2x's a week caught up with me!
**************************************
It was the famous Dr. Murakami who diagnosed me, and he has now retired. But that's why I posted his web site and forum address ~ if you post a question in the Ask the Doctor section, he will answer you! Because he was the LLMD who diagnosed me and initially prescribed the meds, my GP now relies on his recommendations for further and ongoing treatment. He will also communicate directly with one's family doctor, either through his web site or by phone. Without Dr. Murakami, I would probably be either dead or even more severely disabled. So I consider myself lucky and blessed.

**************************************
WOW!!! That's pretty cool!!!
**************************************
I also just posted in the "CFS and Fibromyalgia" thread recently, and I have read your posts there, too. I forgot to mention that I have also tried Gabapentin, and I hated it. It didn't really help the pain, and it did nothing the improve sleep or fatigue. What's worse, I believe it contributed to the "muffin top" I acquired sometime in 2007. Always a fairly thin individual, I have gained about 20 pounds which doesn't look well on my small frame. The weight gain may also be due to perimenopause, or even Lyme disease. Some folks either lose or gain weight with Lyme disease. Now, I think I'd have to starve myself for several weeks to lose a pound...very aggravating.

**************************************
Right there with ya!!!! =(

Where are you from? If your GP is supportive of your Lyme diagnosis and is perhaps prescribing meds, do ask about taking Plaquenil. It carries the very rare side effect of visual problems, which is why you have to have to see an ophthalmologist about twice a year to rule out what is known as "Plaquenil toxicity." The dosage is either 200 mg daily or twice daily, and depends on your weight. Also keep in mind that it does take up to four to six months to see the most benefits. I think I noticed results in about three to four months. Gradually, I noticed that I wasn't reaching for Celebrex or breakthrough pain narcotics to relieve my pain.

Did I ask you where you live? If it wasn't for Dr. M, I would have to travel to Seattle for treatment, and I cannot afford that. I do not own property or such, and I do not have credit cards. So I thank my lucky stars daily for the blessing I have.

Are you currently on antibiotics for Lyme and/or a coinfection. I had to treat "babs" at the beginning of my treatment for 15 weeks, then again for six months most recently. It's a real bugger to try to eradicate.
**************************************
I'm sending you an email to answer the last few things.
~Trav
Love & Hugs,
Cara

- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 8/24/2009 5:55 PM (GMT -7)   
RottenDog said...
i so understand. i lived with pain for most of my adult life. was told i had RA 20 yrs ago.

in the last 2 yrs i have had at least 6 test run for RA and all came back negative. so just 2 months ago my PCP said in a form i had OA.

now i dont know if any test can show this, but i do know i was never given one. just tagged me with it..LOL

*************************************************
Osteo is actually something that has had fairly reliable tests -- As far as I know.
*************************************************

my pain lvl has dropped a lot now i am on both celerbex and gabapetin.

yet i still have both good and bad days. just about a week ago was my first 2 pain free days in over 2 yrs.

*************************************************

Because I'm not under any tx right now, and I have managed to waaay over do for the summer- my gp put me on Hydrocodone for now. I won't take it long-term, as I get paranoid pretty bad. I now take 10 mg's 2 x's a day.

*************************************************
how long did you try the celerbex? as i was given it for my knee, it did not help much with the pain there.

*************************************************
It was a long time ago, but I believe I was on it for 4 months.
& got no relief. That was when I started Gabapentin - I think!!
*************************************************

but it did totally stop the pain in my left elbow. i have lived with for almost 30 yrs. and it is the only thing i have been given that has done this.

and believe me i have tried em all. pills rubs and even a sleeve w/ rubs. till i just gave up and lived with it. LOL
*************************************************

Same here - been living with this (*&^^&%*&^) pain - actually I really can't remember back far enough to a time where I was pain-free. smhair
Also, I still use all of that stuff for pain, as I'm getting more than a little desperate to try to control the 'full body' pain experience !!!
*************************************************

i hope your able to find relief soon.

- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/24/2009 11:13 PM (GMT -7)   
Traveler, i have been on the celerbex for over a yr now. it did take awhile for it to help with my knee, and yes i still have pain in my knee. i like you do not believe anything will take it away.

but then again we can pray for pain free days again. i think its all just a crap-shoot. some can find refiel while others suffer.

sorry i dont have the answers your looking for, but i do wish you well soon.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 8/25/2009 3:56 PM (GMT -7)   
CYMBALTA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 12, 2017 1:53 AM (GMT -7)
There are a total of 2,904,291 posts in 318,742 threads.
View Active Threads


Who's Online
This forum has 158129 registered members. Please welcome our newest member, Luna1969.
241 Guest(s), 0 Registered Member(s) are currently online.  Details