Hello folks with Sjogren's. I have been having a "mixed autoimmune response" to my herx reactions and antibiotics. One time the autoimmune response resembled lupus, but I had the single stranded DNA, not the double, suggesting it was drug induced. Sure enough, drop the medication and the symptoms went away.
But for more than 7 years, the major symptoms I have in reaction to lyme treatment are drying of mucus membranes, organ pain, lack of urination (which I now understand can be Sjogren's), increased arthritis, swollen lymph nodes, and crushing fatigue.
AT one time the meds I use kept me executing my daily life, but no more. If I drop them, I am over run by lyme and co., but with them, I have this autoimmune set of symptoms that makes me absolutely miserable.
Have any of you tried taking cortef to reduce the Sjogren's? I'm thinking of talking to my llmd about this.
Mary
Posted by Lymetoo (Member # 743) on :
I've been on cortef for about 8 yrs. I got on it for adrenals. I found out 2 1/2 yrs ago that I have Sjogren's, but may have had it for way longer than that. I do think the cortef helps.
I tried to get off the cortef 3 yrs ago and my Raynaud's came out full force and I had intense cranial nerve pain. It was horrible. Got right back on the cortef!!
I only take 10 mg a day.
Posted by map1131 (Member # 2022) on :
Interesting. I too have some suspect lupus sx that come and go.
Adrenal support is much needed. I tried cortef 10 mg with my LLMD years ago but one year and I stopped all the hormonal stuff because I was not getting anything out of them.
But I wouldn't of known back in them days if one or some of what I was taking was beneficial.
I was a walking talking toxin. Just finishing up 3 years of abx and in the pit of bad bad place.
I muscle tested no, no ,no on the all the hormones and dropped them. Some things do change in this illness. What your body doesn't want or need today can change once you clear out some other garbage, namely neurotoxins.
Very interesting.
Pam
Posted by ladyjenie (Member # 21098) on :
I have been having the same "mixed autoimmune response" the past week to the point of praying I didn't wake up. Sweats were the pitts. Rotated from recliner to bed and back again.
Doctors do not understand how this stuff affects a person. If they did they'd put us in the hospital or knock us out until the flare passed.
I had one doctor do just that. She put me in and lightly sedated me during the day and when I came around in the afternoon she'd have her nurse report how I felt. I felt a little better each day and by end of week I was ready to go home. I guess this is what it takes to shut if off at the pass. Good relaxed rest is very helpful. This doc was understanding and an angel.
I don't know anything about muscle testing and the hormones. Who does that kind of testing? I doubt we have access to it in Texas.
Every time I see a doctor that does specific labs on me they tell me I have Lupus. This has been over the 12 years I've been ill. I ask them to do the Lupus panel and when they do Lupus is negative. It's the elusive Lyme.
Oh yes, could you please explain what Cortef is and how it's given. Is is scripted or herbal? Is special labwork done to see if you need the Cortef?
Prayers to everyone, especially those is awful pain.
Posted by lymewreck36 (Member # 4395) on :
WEll, ladyjenie, I was asking the same question. I looked up cortef and found it was a hydrocortisone. I am wondering what kind of dose shows benefit without causing the lyme to be invigorated.
Dose the low 5 mg dose cause weight gain and puffy face like predisone does? Weight gain is out of the question for me.
I started to do a search on lymenet about cortef. WAs reading through the results but did not yet find answers to these questions.
Prayers for everyone!
Mary
Posted by Lymetoo (Member # 743) on :
Ladyjenie.. I will keep that REST plan in mind for the future! Thanks!
Cortef is way less damaging than prednisone. I can't remember the ratio but I think 10mg of pred is 4 times stronger than 10 mg of cortef. May be even higher than that.
Hydrocortisone is made everyday in the body. This supplements what our bodies make. I would want to keep it below 30mg a day to be on the safe side.
Yes, it is a prescription. I had a 24 hour urine test showing my adrenals were low. That is when I went on the cortef. I am quite thin, so no problems at this dosage as far as weight gain. No puffy face.