Autoimmune or not/take the steriods?

Has anyone here had such physical symptoms that they took a week of high dose cortical steroids as a trial to see if any symptoms got any better?

I realize that we don't want to take them unless in an emergency (if we have Lyme), however, my University of Michigan Neurologist wants to try it due to the possibility that an autoimmune problem is causing my issues of joint swelling, fatigue, muscle weakness, etc.. The main issue that scares me (and maybe him) is that I have a bunch of brain lesions and a slow cognitive decline w/head pressure. We don't know what caused the lesions at this point and only my IGENEX positive test and symptoms point to Lyme and many other Lyme tests say negative. They are not convinced that its Lyme (and neither am I). They also are reviewing my records at a ssssllllooww pace for a diagnoses while I'm getting worse.

The biggest concern is that some brain nerve demyelination is going on due to a disease and steroids may help to halt some of the processes. Primary progressive MS hasn't been ruled out yet but I don't have OG. bands in the CFS or lesions on the spine. I'm worried about my quick mental decline so I'm about ready to try it since I haven't seen improvement with two months of antibiotics from my other Dr/LLMD. Any advice?

I realize it takes time. Doxy 400mg daily for 8 weeks, Zithromax 500mg for 3 weeks, and I only made it 2 days on one daily Flagyl 250mg due to facial and finger numbing after taking it. I thought it was a bad reaction but in reality it had made my symptoms just worse. The two days after Flagyl I actually felt a bit better for once, but the risk was too much. This protocol is from my LLMD, but he just quotes the famous Dr. Jones a lot saying any bands in the 30's are indicative. I don't know if he is actually following any specific guideline/protocol.

I did have a Bartonella IGG come back as 80 which is a bit high but we haven't addressed it yet. The idea of lesions is bad enough, but the cognitive decline (dizziness, confusion, head pressure, etc) even after starting medication makes it harder for the non LLMD (U of M) and myself to believe its lyme. I would have felt better if the cognitive part would have stopped after starting meds, but it has gotten worse. I didn't think that was supposed to happen.

The university Dr's

I have made great strides in the diet but I could do better. I don't drink alcohol, don't smoke, don't drink caffeine. Mainly drink lemon water and burbur drops for detox. I have done a few Epson baths and brushes lately. A bunch of supps (like 20 plus pills a day) since my LLMD loves them.

They actually took me off all meds for the last week since I had some crazy heart palpitations last weekend after having forehead pressure all day with some numbness. The LLMD thought I had some toxic build up, but if anything I felt the same for the first 4 days off and the last 2 days I have felt worse than normal (although the bad head pressure is gone as if it was medicine induced). I just have the normal head pressure now when upright. Laying down actually relieves a lot of my head pressure and dizziness.

The last two months I have slowly declined while on meds and I'm officially off work on leave now, so im hoping to turn a corner before I eventually lose my job of 18 years. That's why I was contemplating taking the steroids, but realize that they will suppress the immune system. I have had time to read almost three Lyme books in the last month but not much is said about steroids. I did read though about low dose naltrexone, so maybe that's a choice but I don't know if its strong enough...

Please don't use the steroids - they are not for use while the person has a possible ongoing infection - you have a positive Lyme test, so there's no doubt that you have an ongoing infection!

I had a couple of steroid injections before I knew I had Lyme, and they only made everything a lot worse! Including the pain that I got them for in the first place.

Like Razzle, I would suggest LDN first. LDN will help raise your immune function - and you need to be doing a lot more to help your body detox. That's why you are dealing with increased symptoms each time you add in a new abx - more bacteria is being killed and leaving behind more toxins.

I also agree with Razzle about treating Bartonella. For many, including myself, treating Lyme disease made the symptoms from the other infections I had come out even more. I had to add in Bartonella treatment by the time I was 3 months into my Lyme treatment because of overwhelming Bart symptoms.

All of the things that you mention that are making you and your doctor want to use steroids are very common for these infections.

Honestly, it doesn't sound like your doc knows what he's doing since he's suggesting something that will only make it impossible for you to heal and will definitely put you further behind in getting these infections under control.

In looking for something else, I came across this:
"36. How does prednizone or steroids help Lyme patients?

Trick question- Do not take steroids if Lyme disease is even suspected, unless it is a life threatening emergency. Steroids
 suppress the immune system and allow the spirochetes a non-challenged environment in which to
 multiply. Many people who now suffer with chronic cases of Lyme disease were 
given steroids and are now chronically ill, disabled or have died. If you must take steroids it is recommended to take antibiotics during that time."

/sites.google.com/site/drjoneskids/faq-answers