Hello all..I haven't posted for some time. I have been dealing with some issues of depression and anxiety.
Anyway..I am still in limbo waiting for doctors to tell difference between lyme and MS.
What would happen to a person dx with lyme if they were treated with IV steroids? I ask this because several years ago when I had Optic Neuritis I was treated with IV solumedrol. After that treatment I felt better for about a year.
If it was indeed lyme wouldn't it have had a bad effect on me? I have posted my labs from Igenex awhile back..pretty inconclusive..I have some positive bands and I test postive for a co-infection. But my mind keeps wandering to how the steroids put me in a sort of remission for a year. Am I correct in thinking that would not happen if it was Lyme disease.
P.S. I am currently getting treatment for my depression and anxiety. It got out of control these last few weeks. Can't take the what if worrying much longer after 9 years of being ill. Meds are kicking in though and I am improving my emotional state.
I can't say how anybody will react to anything but I can guarantee you that the solumedrol put me in h***. When I look back on what I was going thru pre steroids it was a walk in the park. The doctors were trying to say MS with no real indicators from MRIs, spinal tap, emg, evoke potential, and I don't know how many blood tests. I was given 1,000 mg solu-medrol for 4 days but didn't get to do the 5th day because I ended up in the ER with heart palps. The ER doctor said he didnt think it was MS but didn't know what it was. The nurse who gave the IV said if it was MS the steroids should have helped tremendously. They didn't. But that does not necessarily mean you have MS, I just don't know what to tell you. Have you had lyme tests and if so how did they come back? Jon on here insists lyme can cause ALS so maybe it can cause MS too. I don't think we know enough about this disease to tell. If you like you can key in on my name and go back and read the first few threads I posted especially the first one and see if any of it mimics your illness. I would reprint it but it is so long and everybody here has already read it way back when. But do go back to the first one anyway. I hope you can get some resolution soon because that is half the battle to me. By the way what are your symptoms? Mine are 24/7 and have been for over 4 1/2 years and that is why I never thought it was MS. MS comes and goes unless you are late stage I believe.
My symptoms or posted somewhere here too. They are mostly neurological except for knee pain and constant fatigue. I am now starting to have some vision problems again. My symptoms do wax and wane. I am confused now wheter to see a LLMD or find a new neuro.
All negative except 41 Positive and 31, 39, 58 are indeterminate
My B. HenselaeIGM is negative
B. Henselae IGG is positive with a titer of 1:80
I am very confused on what to do. I did have relief for about a year after I had the solumedrol. I was very sick while taking it and couldn't complete the whole weekend of IV but I won't for a whole year without any problems after I had it.
Does lyme wax and wane also or is it always there?
That sure looks like enough positive and indeterminate bands to me. Maybe Ticker will come on and verify.
Have you seen an llmd. I have not but the ID doctor I think believed it was enough for him with all the prep work I sent him to treat me with rocephin IV right off the bat. It was kind of a weird office visit because at first he said the usual you don't have lyme but then for some reason after listening to my heart he put in for the IV. I'd love to know what he heard. His staff said he has never treated anybody ever without a positive test for anything. It is a shame my liver went crazy because he agreed that some things clearing up was a good sign but unfortunately he went back to the old CDC protocol of 100mg 2x a day of Doxy. It didn't do anything. Now I am on the Samento and doing a lot of praying. I only had 1 band positive thru both Quest and Laborp and it was 23 which is lyme specific so that's what I am going on. I find it interesting that both labs showed the same. I should probably have Igenex test too but I will be paying for the IV for the next year anyway. I am convinced it is lyme. I just have too many of the little quirky things that are more lyme related. If you can afford it I would check out an llmd because I am not sure a neuro will help unless he is lyme literate and good luck finding one of those. Keep me posted.
PS As far as waxing and waning that hasn't happened to me but a lot of people on here said they have felt better for years and then it hit again. Maybe some of them will tell you about it.
Ticker has already recommended some LLMD's for me. (thank you Ticker)
Sadly though I had to resign from my job that I loved a little over a month ago because I was having to many physical and emotional symptoms to carry on. My husband has a great job but we just can't afford to have to pay cash at this time for an appt. I need to work on my emotional state for a few more weeks anyway. My PC put me on 30 days of Tetracycline a few months ago. I know that med is not strong enough but I believe it worked some things up. I never had burning in my legs and feet like I do now before then and shortly after that is when the anxiety attacks and depression set it.
I might just have to make an appt. with a LLMD since I know it usually takes awhile to get in for a visit anyway. If they look at my results and symptoms and rule it in or out it would help me emotionally a great deal. I am currently on some medication to help me cope and I feel it is starting to kick in.
Having dealt all my life with (but most times just barely survived with) a mother (now almost 87 and finally in a nursing home) with Paranoid Schizo. & Manic Depression and being on meds myself for more than a decade (for plain old blaah depression) I truly hope that the meds will work with your emotional stability.
I find that as bad as the Lyme was/is, when my depression gets the better of me, it seems impossible to tolerate the Lyme effects another day, but if I can keep my spirits up and somewhat positive, as bad as the Lyme has gotten, I can deal with it easier....I find the mental problems much harder to deal with than the physical....
That is exactly how I feel. It's hard to deal with anything with the depression/anxiety. I finally admitted myself to hospital a couple of weeks ago because I could not stop shaking and crying. It was really out of control. The doctor there said that after 9 years of being sick and worrying that my brain had had enough. I totally agree with that.
Thank you for your wishes and I hope you are doing well. deb