Possible Perplexing Point with Lyme

if you are low in cortisol, then I think supplementing a low dose would be appropriate.

I know there are lyme patients....some have been on the forum who do take hydrocortisone - 5-10 mg.

As long as it's low dose...and not the doses that are prescribed for autoimmune diseases...it should be fine.

It shouldn't suppress your immune system if it is indeed low....and you add a low amount. I don't think that would cause the infections to proliferate.
Is it a Lyme literate Dr. who is suggesting this?

I tried low steroid (10mg) from rheumy and had insomnia for a good 5 days. Totally miserable!

What all have you tried for ebv?

Was prescribed Prednisone (10 mg twice a day) for severe allergies and bronchial irritation when I first moved for college to ohio river valley area. This was 3yrs ago, before I had any idea I had lyme disease. HORRIBLE REACTION. Insomnia, complete confusion, sitting in my room crying, depression, anxiety, intrusive thoughts, body and joint pains, muscle aches, etc. Never felt better after this episode leading to eventual lyme diagnosis and 3 years out, I'm still coping with all that prednisone started.
The problem is that prednisone is immunosuppressive so if your immune system is holding lyme in check (as I believe mine was) the second you knock down that defensive line the lyme will amp up into full gear. I would avoid it if at all possible.

amelie - First, I'm sorry you are dealing with this so young. Hate to see that and hope being younger helps your body overcome more. I am concerned my daughter has Lyme but has the system to hold it back now. She has showed signs.

Your story of prednisone is almost exactly what happened with me 9 years ago, though I know I've had Lyme since 2002. But because of weak immune system, I developed something called Sweets Syndrome, and it was miserable. The doctor, who said I did not have Lyme (CDC type), put me on crazy dose prednisone. Like you, I literally went crazy. And it really messed big time with immune system. I just wondered if 2-5 mg would do the same. I was put on doses as high as 60 mg, then quickly came down to 40, then quickly down to 20. Didn't hardly sleep for two weeks. How high of dose did they have you on?

Thanks for the story about the autoimmune. Deeply worried about that. Ironically, I'm hoping Lyme tests are high so it might be causing the RA or Lupus type symptoms. Waiting on tests now. Have you been able to take classes?

Rig - Thanks for your thoughts. Just curious about what symptoms you had. This is affecting my foot, toes, knuckles and hands, more right than left. Also, neck can get very tight.

Every test I have taken for autoimmune, and there have been multiple tests multiple times, have been negative EXCEPT the complements 3C and 4C, which indicates autoimmune. I've had reactivated EBV for at least a year or more now, which can cause autoimmune.

I'm not trying to insist it's autoimmune (RA or Lupus), but those facts and symptoms make me very concerned. Waiting for blood tests taken last week. How are you doing, Lyme wise, now? Hope it is better.

RW it could be inflammatory without being autoimmune in the sense that youre talking about (where your body is creating antibodies against itself in a self-perptuating fashion). I think if youre dealing with an active infection (lyme or ebv?) it can often cause inflammation which leads to symptoms like this. Lets see what your MDL labs come back with. Sometimes I refer to autoimmune (adaptive immune system) and autoinflammatory (innate immune system) interchangeably although there's a difference.

I dont think you have Lupus or RA based on your bloodwork and symptoms. You dont have any of the typical markers, and I feel like it would show up on an X-ray. RA it would be obvious your joints would be swollen and hot I think.

My guess is you have some autoinflammatory mechanism triggered by an infection (ebv or lyme), or else it is an autoimmune syndrome but not on the spectrum of connective tissue diseases which you seem focused on, otherwse we'd see it in your bloodwork. The vitiligo does make me think autoimmunity in some form.
Remember there are over 80 autoimmune diseases and probably hundreds we dont know about, so it may not necessarily show up on a standard autoimmune panel which is usually looking for your typical connective tissue diseases.

Take what i have to say with a grain of salt though, I'm just spitballin and i've been so crippled by pain I can barely think. I finally broke down and took some gabapentin and I'm feeling a bit better this PM, hence the post.

Keep us posted on MDL.

Rig - I had read your post about remission before but just didn't put the name with your post here. Glad for you and hope rest continues to improve. The pain in my toes is more joints in big toes/metetarsal.

dcd - Have you gotten test results for covid? Just hoping something can help you feel better and get on a good path. I'm not sure if it's new stress concerns over autoimmune or just the process, but all keeps getting worse here. More pain, especially in feet. Also noticed heavy sweat from underarms last couple of mornings with strong smell, which I rarely have ever had.

Trying to get an ultrasound or MRI for hands and feet as x-ray can miss early RA symptoms. Just would like to get it cleared out of my head, one way or another. Waiting on new autoimmune tests now - just basic CRP, Sed rate, RA. Doctor has had them since yesterday morning and it frustrates me to wait. I'm not good in that area, and there is really no reason to have to wait.

carlnpa - I didn't know that about the body making prednisone. I want to avoid taking it unless absolutely in dire straits, and then only at very low doses if I have to. I am taking Plaquenil now, though I'm taking the day off with it to see if it is what might be causing new problems like a herx.

dcd - I know you don't feel well so don't reply if you are feeling it today. I had them do three Bs and different strains of Bs. It's weird too. I have a vibration, like a mini spasm, in my leg that happens anywhere from every 5 seconds to every 20 seconds. It's in my thigh, and I used to get those a lot when all this really kicked loose years ago.

Pain in in the front part of the foot behind toes and in big toes. I feel it more after walking.