unbearable pain

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momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 1/21/2010 11:04 PM (GMT -6)   
My worst lyme symptom has been arthritis in my knees. I was managing the pain well with an antiinflammatory. On Jan  5th I finally saw an LLMD. On t 1/7 my doxy was increased from 200 mg a day to 300 mg a day. Within 6 days of starting the increase, my pain in my knee increased ten fold. I have since added 500mg/day of zithro. The pain is the same, no worse since zithro.
 
I cannot bear the pain any longer. Could it be the doxy or perhaps just progression of the arthritis? I had it so well under control before the doxy increase.
I don't know if this could be a herx reaction.. its only my knee.
 
This is unbearable at this time.
kathleen

nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/22/2010 12:26 AM (GMT -6)   
Kathleen,

I can't help with the question about herxing; I'm incredibly new to all of this....today was Day 2 of doxy! I haven't been sick from the doxy (I'm at 400 mg/day), but am dreading the herx. My understanding though is that when you're having a herx, your symptoms caused by Lyme (whatever they are, this is very individual) will get worse. They can get a little worse or a LOT worse....it depends on the person.

Most of my really bothersome symptoms are either back pain or neurological symptoms. sad

Can you contact your doctor for some pain medication? The people in the Chronic Pain forum were just reminding me that it's not good to "tough it out"....you need to find a way to deal with the pain, because when you ignore the pain, it leads to more pain. It's a vicious cycle and you have to break it.

I just wanted to tell you that you are in my thoughts and prayers.....I wish I could help in some way!

(((hugs)))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


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JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 1/22/2010 6:31 AM (GMT -6)   
Doxy only caused me to herx neuro wise. BUT if you have a symptom and it gets worse... that is herxing.... So it's a good sign! Detox baths are the best thing you can do. The Epsom Salt also reduces inflammation so that should help
“You must be the change you wish to see in the world.” -Gandhi

http://lymeactually.blogspot.com/


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/22/2010 6:50 AM (GMT -6)   
my psychiatrist always told me...you have to treat the pain.
it makes so much sense. i have been back and forth with this every day of my life. constantly trying to tuff it out and it's maddening. i wouldn't even think of going into this treatment with to having a handle on my depression and pain. this is what made me stopped the doxcy. and now am back to square one. I have to have my depression and pain management under control begore i can go back on trearment. i always feel like i am giving up control by taking the pills but i really realized i am actually taking control by taking the hekp and not white knuckling it. this is not a quick thing. its a long term deal.
pain zapps all your energy. there is ll kinds of things you can do and I do and pain meds is one of them. dont let this derail you from your treatment like i did by day 8 of only 10mg a day. if you are not a pain med kind of person the mustard bath and epson is great too.

go for it


bucci
hep c , lyme
Dad has lyme


momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 1/22/2010 8:25 AM (GMT -6)   
Thank you.
 
I take epson salt baths daily and they seem to help. I also take tramadol for the pain and percocet when its beyond what I can deal with. The pain meds take the edge off but I can hardly walk. My ortho says I might need the knee cleaned out but I am trying to figure out if I am there or if this is just an antibiotic reaction thing.
 
Momtomonsters

pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 1/22/2010 11:20 AM (GMT -6)   
kathleen,
i have the same problem, the right knee pain, and stiffness all around. the stiffness seem to have some what subsided with doxy(daily 200mg), i was able to fold/bend the knee in both directions. but inflammation is still there.. been 2 months now i think.
just not going away, for last week i've reduced my intake of wheat/starch food that are high in inflammation. next week i see an llmd - let's see what he says. but i remember when i started on doxy my knee hurt bad.

right now my other symptoms - post doxy is, daily sleep disorder. sweat during night. mild (scale of 1-2) pain in fingers, toes, ankles, lots of twitching everywhere. and occassionally fast racing heart with chills for no reason. even when i am wearing sweater and in 70F, still chill. i wish the doc can find out how long i've had this disease. whats a normal wbc count? i had 650. i wonder if lyme is gonna bring this down.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/22/2010 12:14 PM (GMT -6)   
Kathleen,

It does sound like you could be herxing. Herxing usually happens when starting a new medication or an increase in dosage. A detox bath, like Jenn said, is a good idea. Maybe get something to rub on the knees like Bengay for arthritis. And last but not least, let your doctor know.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/22/2010 2:25 PM (GMT -6)   
pepphell, so you finished your docy treatment? what are you taking noww? how long did you take it?

bucci
hep c , lyme
Dad has lyme


longvalleynjgirl
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/22/2010 6:16 PM (GMT -6)   
I, too, literally feel your pain.  I was diagnosed with lyme in this past August....right knee pain was one of my symptoms.  I was treated with doxy for 1 month.  Since November the pain has become unnbearable.  An Ortho md told me I had arthritis but did not recommend a replacement at this time.  I was wondering if you seen an orthopedic md and how you can tell the difference between regular arthritis and lyme arthritis.  I am debating on whether to see a lyme specialist and am getting a second opinion from a different ortho this week.
longvalleynjgirl

momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 1/22/2010 10:56 PM (GMT -6)   
I was told it is osteoarthritis and that a replacement is needed but will not happen at my age. Ortho doc said the lyme might be tearing tendon. I have a torn rotator cuff as a result.
 
I take tramadol or percocet for pain but it dosen't seem to work. I wonder if I should stop antibiotics or ask ortho to clean out joint.
 
Momtomonsters

Post Edited (momtomonsters) : 1/23/2010 9:13:30 PM (GMT-7)


longvalleynjgirl
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/23/2010 6:16 AM (GMT -6)   
I have an appt tues for 2nd ortho opinion.....First ortho also would NOT perform replacement, but would give a synvisc shot...would not give rx for pain meds.  So, I've been icing, taking epson salt baths twice a day, and tylenol for muscle pain every 4-5 hours.  I am 59 yrs old, and never had pain in my knee before Lyme.  Knee replacement is extreme IF, this is all from lyme.  My thoughts were to possibly get on doxy again, but if you are not getting relief from antibiotics I guess maybe the synvisc shot is worth a try.  I have many questions for the ortho md and will update you if you'd like.
 
take care.
 
j

pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 1/23/2010 10:11 AM (GMT -6)   
i showed two rhuey, both said, very rarely lyme will damage the joint to an extent where you'll need replacement surgery or something. However replacement surgery also depends on how old you are, and how worn and torn your bones are.

bucci:
I am still on daily doxy 200mg. the knee pain goes away some days, some day it is back. i don't know what is going on. negotiating steps is the hardest part for me. i go one step at a time holding rails. also i noticed that pain has moved from one bone to another in the same knee.


I am going to see a llmd for lyme treatment. 3 wks of doxy may not be enough for me. I remember when I first got attacked on the right knee, i thought i'd need another knee (my pain was so bad, 10/10, it'd hurt to press lightly), but as that pain went away, i have 0 pain in that area now, and its a miracle that nothing was needed to make it go away. however the last 2 months pain that i am having in different area of knee is not going away.. and one rhuemy said it was the cartilage so he was worried so got my xrays done.. haven't got the result. but i pray everything is alright with knee and lyme is the only culprit here.


Start intake of :GLUCASOMINE for joint and cartilage health. (dont buy a product that has chroditin in it).

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/23/2010 1:28 PM (GMT -6)   
longvalleynjgirl,
Is your ortho Lyme knowledgeable? Please see a LLMD before you have a knee replacement!! It would be best to cover all possibilities before having a knee replacement.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 1/23/2010 10:02 PM (GMT -6)   
Although I had lyme (undiagnosed for 4 years) I had no major joint pain or problems other than stiffness and occasional sharp alternate shooting pains until I started treatment.  My left knee didn't bother me at all until finally diagnosed and dr. coupled the amoxicillin with probenecid.  Now it is my elbow aching terribly and dr. says tendonitis.  So I totally believe it is the toxins which can cause the joint pain and inflammation while undergoing treatment.  It is just a battle of how to get rid of the toxins before the joint problems get too bad. 

momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 1/23/2010 10:16 PM (GMT -6)   
I started teasel tincture today and hope for some relief. The pain meds are not really effective which is really scary to me.  I have been given a handicap parking placard. I am grateful for that, it is helpful at times.
 
 
 
 
 
 
 

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 1/24/2010 12:32 PM (GMT -6)   
I have been taking teasel root tincture for close to 4 months now. I herxed terribly on it at first (pain was very bad). The source I got it from said to build up to 9 drops total a day (3 drops, 3 times a day), but to cut back if your body doesn't like that much. My body did NOT like that much, so I went down to 2 drops 2 times a day and doing OK on that much, although I wish the pain would just go away completely - it just remains about the same. Can I ask where you get yours? The source I got mine from is Lady Barbara's Garden (you can google it), but she says due to high demand, only one bottle per customer and I'm nearly out!

momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 1/25/2010 7:30 AM (GMT -6)   
Yesterday was a really bad day. My knee is swollen. I was on percocet all day and I hate that. I can't lay down, the pain magnifies 10 times when I lay down. I am going to get into ortho today. I don't know if they can do anything but I have to try. This pain is intolerable.
 
momtomonsters

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 1/25/2010 9:47 AM (GMT -6)   
Just a thought...
I have discovered for me, a lot of times when I have the more intense joint pain, a detox bath helps a lot! I know that a part of the relief comes from simply having the area that is in pain in the warm water, but I don't care - I just want relief! I will also use a heating pad & ice packs to through the 'bout' of pain.

I am only in my late 40's & have NO desire to be on very strong pain meds, but from time to time I do have to ask my doc for something. The pain we Lymies can suffer can be equal to what post-op patients experience, although it's not easyj to get those pain meds that work on that kind of pain.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


longvalleynjgirl
New Member


Date Joined Jan 2010
Total Posts : 3
   Posted 1/25/2010 3:23 PM (GMT -6)   
kathleen - momtomonsters
 
I hope you finally get some relief today from the ortho; or at least a plan to eliminate the pain.  I have been either on the couch or in bed for the past 5 days from pain in my knee, which is also worse at night.  Please let me know the outcome of your md visit.  I have mine tomorrow.  Will update you.  Good luck.
 
j

momtomonsters
Regular Member


Date Joined Aug 2009
Total Posts : 89
   Posted 1/25/2010 9:13 PM (GMT -6)   
Thanks for all of your responses. My ortho is on vacation this week. I am in with a PA on Wed but would rather wait in pain until next week to see my own doctor.
 
I am going through epsom salts like crazy.
 
Kathleen

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/28/2010 9:12 PM (GMT -6)   
Tala 3. Were you on antibiotx before teasel root?
hep c , lyme
Dad has lyme


Nana Monster
Veteran Member


Date Joined Jul 2009
Total Posts : 955
   Posted 1/29/2010 6:46 PM (GMT -6)   
I don't have Lyme but I do have arthritis. If it will help any of you I had knee surgery to repair a torn maniscus and torn cartildige,
and chrondo himma himma (crunching of joints). I also have arthritis and bakers cysts in both knees. The one they "fixed" was
so messed up by the time they got done that my kneecap was an inch out of place. I used Super Cissus RX to repair the muscles
tendons and ligaments....Bio-Sil to rebuild cartilidge and Malic Acid to detox. The three of them together are a God send to me
as I had a hard time doing my job. I work in the dishroom of a 200 bed nursing home and it's a very physical job. This has got it
so I can sleep at night and the joints are doing better. I've been on it for a year now and the kneecap is where it belongs and I've
gotten off most painkillers (the super cissus has a built in painkiller). I've had the arthritis for 48 years now and fibro for at least 10.
I hope this can help as I no longer need knee replacement.

Nana Monster

Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 1/31/2010 10:43 PM (GMT -6)   
Bucci,
Yes, I was on antibiotics for a short time before starting the teasel root.  I'm still doing both.
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