Sacroiliitis anyone?

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KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 3/27/2010 5:01 PM (GMT -7)   
Anyone diagnosed with Sacroiliitis?
KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 3/27/2010 6:08 PM (GMT -7)   
Hi KO: I just went to my doc last week with severe low back pain. She started with pap smear etc and I see her again in a few weeks. I just googled this condition and I even have the elevated temp and eye problems I was blaming on the Lyme. Does this condition come along with Lyme or something completely different. Did they take an x-ray for diagnosis?  I have had such pain and stiffness I have a hard time getting out of a chair. What are your symptoms? I am afraid that steroids is the treatment normally, am I right?   Thanks  Dowa

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 3/27/2010 8:18 PM (GMT -7)   
Hi Dowa,
That's what I was trying to figure out (if it has to do with Lyme or not).  I also have eye problems mostly pain in my right eye that comes and goes.  My biggest problem was joint pain in my hips.  I would get so stiff if I sat in a car or in a chair for any length of time.  I have been having a real hard time sleeping on my left side, I have pain in my right hip, but not as bad.  It has gotten progressively worse over the years.  The Rheumy I saw about 3 years ago wanted to do a bone scan to "rule out scary things"  he acted like there wasn't anything wrong, when I explained that I was very active in sports etc and went to where I couldn't even take a walk after dinner without severe pain in my hips.   I started to go to this doctor for bioidentical hormones and although he didn't come out and say he doesn't believe in chronic lyme I don't think he does.  He gave me what he called accupuncture with homopathic injections.   It wasnt't what I remember accupuncture looking like, it looked more like just a syringe that you give a shot with.  I didn't have him write it down, but I have to say that for the first time in a very long time I could sleep on my side without pain, without waking up all night and it was wonderful.  I am going to Florida on Monday and I hope it last the whole time I am there!  It sounds like the effects are suppose to last awhile.  Take Care, KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/27/2010 9:17 PM (GMT -7)   
Hey KO,

Are you still on the hydrocortisone? How is it working for you?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 3/28/2010 9:21 AM (GMT -7)   
HI CG,
Yes I'm still on the Hydrocortisone.  I am only taking it in the AM not 8am and noon.  I can't tolerate it if my stomach doesn't have enough food in it.  I haven't noticed any big difference in how I feel, I don't know if it's because I'm not taking 2 doses a day or not.
KO
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/28/2010 12:39 PM (GMT -7)   
When I first started taking 10mg in the AM and 10mg in the evening, I noticed a HUGE difference. I was up and about, doing things I hadn't done in over a year. Well, I started weaning off to just 10mg a day and all my symptoms were returning. My doctor put me back on 10mg twice a day again and I am starting to feel a little better. I wish I hadn't gone down at all now. I am noticing too that I am now having more good days than bad. I don't know what the steroids are doing but they are doing something. I don't want to be on them long term though.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 3/28/2010 12:41 PM (GMT -7)   
Oh, and I had more energy too which was a BIG change for me. Since I went down and am now trying to get it all in my system again, I've been fatigued again. I am almost positive that it is helping my adrenals from all the energy I had on the larger dose. Hopefully, my body gets back that way again. It was nice while it lasted for sure.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 3/31/2010 9:10 AM (GMT -7)   
Can you guys share why you're taking hydrocortisone?

PS - I have been dx'd with sacroiliitis before.

Take good care!

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


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 3/31/2010 12:27 PM (GMT -7)   
Most on here that are taking the HC do so for Adrenal Fatigue.
 Co-Moderator
Lyme Forum


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 3/31/2010 9:24 PM (GMT -7)   
Oh OK, thanks. Adrenal fatigue is something my GP (BC, Canada) would never bring up.

I'm sure my adrenals are as fatigued as I am!
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