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safe doses of hydrocortisone/methylprednisolone when Lyme activity is possible?

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Posted 6/5/2020 8:09 PM (GMT 0)
Hi all!
I've gotten extremely worse in the last two months and I need advice. Now I'm bedridden with my CFS and my inflammation in body is crazy! like when I'm burning inside... Also orthostatic intolerance is really worse...10 minutes on my feet makes me exhausted.

All happened a month after I quit disulfram (due to diarrhea) and tried peptides therapy.

From distress and despair I tried for only one day 8mg of Medrol (Methylprednisolone) and I was really better for next 2 days...
I know this corticosteroids drugs are hell, but I wonder what is permitted dose for anti-inflammatory effect but no for immune system suppression. Have you ever discussed this with your doctor? Any experiences?

None of the supplements solve my inflammation :-/

Thanks a lot, Martin
Posted 6/5/2020 11:51 PM (GMT 0)
First off, I personally think the risk of prednisone w a lyme infection is probably over stated, especially in a chronic case. It lowers the inflammation, but the b and T cell antigen defenses still work. If it helps you feel human I would use it. 8mg isn’t a lot.


Also, what do you mean by “burning inside”? Finally, which peptides did you try? Reason I ask is because I was looking into peptides for my autoimmune condition.
Posted 6/6/2020 5:09 AM (GMT 0)
MartinK I just want to warn you; I gained a lot of weight on hydrocortisone. I was taking a low dosage too.
Posted 6/6/2020 7:43 PM (GMT 0)
Hi all, thanks a lot for answers ;-)
I would like to find a dose that will be safe, not immunosuppressive, and will help me with inflammation.
I think, hydrocortisone is more gentle than prednisone/methylprednisolone... but I'm a little bit scary from all these types of drug!

@dcd2103: burning inside - inflammation...when I'm in hot temperature, I can't stand it, cold shower makes me better for hour. Prostaglandin E2 is high, high IL-8, Zonulin and some more neurotoxins like Eosinophil X. Now Im waiting for more results from IMD lab Berlin...like TGF Beta-1, VEGF, MMP-9...

I tried TA-1, TB-4 and Semax...and I think I overstimulated my immune system and maybe make lot of oxidative stress/MCAS...:-/

@RainyCloud: And your dose was? And for how long? Thanks a lot ;-) No moonface?
Posted 6/6/2020 9:46 PM (GMT 0)
Martin - here is what a LLMD has in his treatment guidelines:


"In my practice, I rarely used this because there is a very small risk of immune suppression using prescription hydrocortisone. However, the doses I recommend are the normal amounts the adrenal glands should make. I prefer ashwagandha because it is a supportive herb that does not suppress the immune system.

Cortef 5 mg 1 to 2 pills in the morning and 1 to 2 pills between 12 pm. Taking late in the day may disturb sleep."
Posted 6/7/2020 12:48 AM (GMT 0)
Martin, I think the heat/burning inside is a symptom of your orthostaric intolerance. All the people in the dysautonomia Facebook group complain about it. I don’t think it’s the inflammation directly causing it, although you probably have that too. For example, my sed rate is often above 50, yet I have no heat intolerance or internal burning. Yet I routinely see people w POTS complain about this. You probably have some form of autoimmunity going on.
Posted 6/8/2020 12:30 AM (GMT 0)
After about 2 months of being sick I went on 10mg of prednisone and got a little worse, then I kept upping the dose to 60-80mg and really thought I was dying. After getting off the high dose and back on 5mg I did a round of 300mg doxycycline for a month and felt 80% better. Stupidly I gave up on thinking it was lyme or CO and looked into other issues for a year all while taking 5mg of pred. I back slid down to about 40% I'm not sure if the pred hurt or not. But I finally went back on abx and switched to 10mg of hydrocortisone in the AM and 5mg at lunchtime. I don't take it everyday though usally skip a day or 2. Anyways I've been able to improve while taking it but I guess it could be making the process slower too.
Posted 6/9/2020 7:06 PM (GMT 0)
Hi all! Again thanks for answers ;-)

@Girlie: Amazing! Thanks for sharing treatment guidelines from your LLMD!
Looks like maximum of daily dose is around 20mg of hydrocortisone...

findings: 20mg of hydrocortisone = 5mg of prednisone = 4mg of methylprednisolone.

You have some own experiences with ashwagandha?

@dcd2103: Yes yes, I have big problems with OI, its totally correspond with my CFS! Any recommendations for a good FB group you know and mention?
I think yes, here is some autoimmune problems - when I have fever, my immunity can jump into normal functioning for one day and I feel better!
But I dont have a POTS.

@trekkar: 80mg is really huuuge dose! If I understand it right (my English skills are not perfect), this "normal" doses of hydrocortisone work for you good...and Predisone was hell... right?
Your adrenals are good?
And no problems with sleeping on hydrocortisone?

Thanks folks ;-)
Martin
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