lyme disease and reactive arthritis

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xray girl
New Member

Date Joined Apr 2007
Total Posts : 1
   Posted 4/19/2007 10:51 AM (GMT -7)   
Hi all,  I need some help. I was diagnosed with lyme disease about 4 months ago. I took doxycycline for 3 weeks and my symptoms keep getting worse. I woke up one morning with a severe headache and ringing in my ear. My rheumatologist recommended iv rocephin for 8 weeks. I finished my treatment 3 weeks ago. He also stated that he belives I have reactive arthritis due to the lyme disease.  I went back to work on wednesday april 4th and by friday evening i was in severe pain. I woke up saturday with my left eye all blood shot and was in severe  pain from the top of my neck down to the bottom of my spine. My right knee was also swollen.  That is how they diagnosed me with lyme because I kept getting knee effusions in both knee. I felt like I was 90 years old. I am only 31. I spent the entire weekend in bed. I went back to work the following wednesday and thursday and spent that weekend in bed also. At that particular time i was taking 15 mg prednisone, 500mg sulfasalazine (2xday) and voltaren(2xday). my rheumatologist has recommended methotrexate and remicade. I am nervous about taking these medications but i need to get better. Does anyone have any information that may help me or did anyone have similiar symptoms? Thank confused , Carolyn

Veteran Member

Date Joined Mar 2005
Total Posts : 3199
   Posted 4/19/2007 11:13 AM (GMT -7)   
Hey Carolyn, welcome to healing well, sorry it has to be under these circumstances.. I know just the person that you need to talk to.. her name is Erin.. she's the other MOD for Arthritis, and she has been through just about the same thing you have been through.. Lymes and all.. hang in there, and I'm sure she'll be here shortly to lend her 2 cents.. take good care.. Duck
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

Veteran Member

Date Joined Mar 2005
Total Posts : 3148
   Posted 4/19/2007 12:24 PM (GMT -7)   
hi Carolyn, much going on!
i can say that it might just be that a lot of the joint pain is actually being CAUSED by the antibiotics.
when i was on heavy AX cocktails, the joint pain got WORSE...that was because the antibiotics were actually "drawing out" the spirochete from the knee joints & synovial tissue.  my neurologist even told me that was going to happen.
i really don't know what to think or say about your starting Remicade. eyes i had Lyme for over 10 years, treated for 4 years...but developed RA at age 16.  i started Remicade just for RA & crohns but this was long after all my Lyme titers were gone.
does your doc suspect that you will respond from Remicade & MTX?  these drugs are for autoimmune diseases.  honestly...i never heard of or known anyone who used them for ReA.  BUT...not saying that it won't work. 
all of my specialists do believe that from my having Lyme that went untreated for so long...that's how the RA developed.  sort of like an autoimmune sequela of Lyme disease.  it might have been ReA at one point who knows.
i wanna say..."it won't hurt to try"...but if i were you, i would make sure that there was absolutely NO ACTIVE INFECTION present. 
what was your last bloodwork like?
i'm still thinking about this....but do write back.  my true empathy for you...this sucks i know.
let me know how you're doing.
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 

Regular Member

Date Joined Jan 2007
Total Posts : 380
   Posted 5/14/2007 7:42 AM (GMT -7)   
Hi xray girl,

I too have Lyme Disease along with MS. A relative of mine is suffering from arthritis so I jumped on this forum and saw your question.

You might want to join us on the Lyme site and ask some questions.

I'm sorry you went through so much distress when taking Doxycyline, but it sure sounds like you had a herxheimer reaction. The spirochetes begin to die off from the antibotics and it causes us inflammation, and we feel rather crappy--this is called a Herx. The good news is when you remain in treatment --you will begin to feel better.

Having a "reaction" to a simple antibiotic is pretty much a great way of determining if you harbor a bacteria! How many people do you know that feel lousy from an antibiotic?

Most people feel good from antibiotics...not lousy.

Choosing a doctor who is knowledgeable in Lyme Disease is your best defense.

So many people do not get treated "long" enough for Lyme Disease, and because of lack of treatment; this horrible bacteria can then present itself as soooo many other "auto Immune diseases later on.

A few weeks of an antibiotic to treat lyme isn't nearly enough time to allow our immune systems to even recognize this bacteria let alone rid us of it. Our antibodies are so clumped together most of us test Negative for Lyme....but, as we begin antibotic therapy, and then re-test, we are positive! that's because our immune system finally can recognize the bacteria and is fighting it.
but this takes more than a few weeks:
The IDSA doesn't belive in "Chronic" Lyme Disease! They say treat for 6 weeks and most are cured. Not so,,,,according to the ILADS group of doctors.

Anyway, we are a friendly helpful group with all types of diagnoses...and will help you unravel the mystery of treating lyme and all the co-infections that go with it.

Because you have a diagnosis of Lyme ( and that's rather rare) I feel it's important for you understand how lyme does mimic so many diseases..

On my script for Minocycline it states: Used to treat Rheumatoid Arthritis.

how do physicians decide which RA patients have a bacteria and which ones don't? and how do they pick which ones to prescribe Minocycline? why such a mystery?

hang in there and like Erin suggested--make sure you don't have lyme before taking any type of Steroids...why? Steroids are the food source to the lyme bacteria. and it will cause your immune system lots of trouble!

good luck to you and good health,
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