Low Dose Prednisone Results

Hello,

I was diagnosed with Lyme disease and have been on antibiotics for a little under a year. I am better than I was and am not getting any of the severe neurological symptoms like seizures anymore, but I have a low positive (fine speckled) ANA for HLA B27 (reiter's syndrome or AS) and SCL-70.

All rheumatologists and specialists that I have seen agree it is not scleroderma or an autoimmune disease and it has been ruled out as a diagnosis, and all of my docs believe that it is just lyme with a slight autoimmune reaction. I am not having much continued luck with just antibiotics alone and was wondering if anyone has had luck with short term courses of low dose prednisone, under 5mgs (I know they are bad for Lyme long term because of the immunosupression, but am looking for a short course or anyone's experiences on it).

I was offered it in the past but declined, and with a positive ANA it may help. I have a lot of muscle wasting and stiffness, fat loss, and painful joints, and the fat and muscle wasting is really taking a toll on me pain-wise for I am down to the bone in a lot of areas and it hurts just to lean on a hard surface or stretch on a mat.

In my 20s and was an athlete before. For background, I am allergic to penicillin and rocephin-type antibiotics after a failed PICC and chest mediport and months of worsening symptoms on IV, found out it was an allergy to the meds and not a herx. Have since recovered from facial droop since stopping these meds.

Besides penicillin, I have been on a combo of minocycline, zith, and tindamax, then tried flagyl in combo with mino, and am currently on a diflucan, mino, and malarone combo. The meds are usually very harsh on my digestive system and I am always on an antifungal to battle thrush. Any experiences with easing of pain and positive weight gains on low dose, short term pred I would love to hear, and if it had any real negative effects in the long term.

Have been doing a strict, organic anti-inflammatory diet with many herbs and vitamins as well, the whole works, but no cigar yet.

Thank u, Pete for your insight. Yes, I am now on my second LLMD, and they do speak unkindly about prednisone. A man in my hometown didnt do well on antibiotics so he now only does IVIG and low dose steroids through a neurologist and is doing pretty well, and he also had an autoimmune reaction as do I. I plan on sticking with the antibiotics, but definitely need an alternative to add for the autoimmune response and pain. I tried LDN in the beginning as well and did not take to it very well.

Welcome, stacz655.

I wouldn't recommend you taking the Prednisone.

Are there plans to treat Bartonella at some point in your treatment?
I see by what you've taken - you've treated lyme and babesia...but not bartonella yet.


Have you heard of LDI? It is working for some people. (Low Dose Immunotherapy)

We encourage all new members to take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information. I realize you are not 'new' to lyme - but there may be some information in there that you could use.

May 2015, I was given a low-dose, long acting cortisone shot by a well meaning doctor who didn't know I had Lyme and it was what put me over the edge and started my serious decline, full blown chronic fatigue, fibro and then I was finally diagnosed with Lyme by an LLMD 3 months later. Cortisone is not good because it allows everything to grow because the body won't fight it.

I wouldn't worry about a slightly elevated ANA. I asked my doctor the same. Mine was 1:80, up from 1:40 a year before. He said that it was just the Lyme. He started me on LDI shots in May. They are supposed to reset the immune response and stop the auto-immune component of Lyme. I am currently on them in combination with the Des Bios Homeopathy that helps the body recognize the stealth pathogens. I treated for 10 months on antibiotics. The first time I got the shot, my reaction was a huge raised bump that lasted 2 weeks, about 3" wide in diameter. He said the reaction indicated a very big auto-immune reaction. The second time, I just had a little pea sized reaction, so he thinks I am getting better and getting the immune system reprogrammed. Going next week for another shot.

I also do a Candida/Mold shot. It sounds like you would benefit from that as well. I had severe Candida and my last EDS scan revealed it had cleared.

I know it's hard to figure out what actually works. Everyone is different. Good luck.