Not so good news from the doc... |
Mar 02 2010 |
I had my third LLMD appt yesterday. Before this appt, I did 2 cycles of oral abx, and got much much much worse. About a week ago, I had to start getting around primarily in a wheelchair. My hips hurtso bad I can't sit, stand, walk, or lie down without an immense amount of pain.
My doc was really concerned when I showed up in a wheelchair, and was especially concerned about the level of CNS involvement. I can't stand up at all with my eyes closed, and I can't even bring my finger to my nose with my eyes closed.
The doc thinks the 2 cycles of abx I just did really ticked the bacteria off, and made it more evident. He also said that if I didn't have my sauna, I would have ended up in the hospital by now.
So, we switched up the abx cycle. Now I will do 2 weeks on, 2 weeks off, but he said I will prob need to go ahead and do IV abx. We decided to give it 3 months on the orals, but he doesn't think I will last more than a cycle on those before I can't tolerate by mouth. I was hoping to steer clear of IV, but I guess I won't be that lucky. Oh well.
My doc has pretty much said I am one of his sicker patients, and it didn't REALLY hit me until yesterday how sick I was. I knew I was very bad off, but when he, a world renowned lyme specialist, told me that I was an extremely sick young lady, it felt like a punch in the gut. I have seen some of his patients, and to be categorized alongside them, makes me so sad, and reality kicks in.
My husband went so far as to show me what I look like when I try to walk through the house...I didn't think I looked like a 200 year old woman all hunched up, shuffling their feet and limping...jeez...
Sorry for all this ranting, but I just feel raw. I put so much faith in the orals and it's not working.
I am going in later in the week (when this damn snow melts) for hip films and some more bloodwork. He also doubled my lyrica and quadrupled my lamictal. I got some darvocet, but that isn't working since most of my pain is neurological. He also prescribed me a lidcaine patch (Lidoderm) to place on my hips to provide some relief. Haven't tried them yet, but I hope it works.
Oh, we also added Nattokinase, switched from reg magnesium to Magnesium Malate, and glutamine powder. And....the entire week 4 of each cycle, I add Alinia 500mg. It is an anti parasitic, and I have no experience with it.
I suppose that's all the news I have now. I hope everyone is doing great and I will continue to strive to keep my spirits up bc I refuse to give into this mess!
<3 hugs and kisses <3
I know Dr. J is amazing, and I had a great visit with him! I have put all my faith in him bc I know he can get me well. I have seen some of his patients that he has gotten well, by nothing short of a miracle, so I know he can do it...I am just so tired of doing this. I have been sick my entire life, and my mother refuses to believe she has lyme, although it is VERY evident she passed lyme to me in utero...
Again, thanks so much! The outreach of people on this forum, and people around the community has been amazing. My husband is a school teacher and has only been able to go to work twice this semester bc he has to help me around. His coworkers and ppl in the community have been great...praying for us, taking up collections to help pay for gas and such for our 7 hour trips (one way) to DC.
Thanks again! This site has been so great for me and I love each and everyone of you. I find it refreshing to be able to converse with ppl going through the same thing as me!
All of the ppl here mean so much to me! I will stay strong! I hope all of you can too! Thanks so much!!!
I really hope this is temporary because I can't really feel that side of my face...
Gosh guys...I just really needed to vent. I feel like everything is crumbling around me, my side of the family is split down the middle right now. My grandfather died on Jan 11. Since then, my grandmother has given some people some of his possessions. Now they are split because of the STUFF. Who cares about STUFF when people are grieving and need support rather than BS?
I am so sick of everything and I am about to tell my family that I will be in contact again once I get "better." For some reason, my uncle who is in chemo (98% curable cancer) thinks I am contagious and that I can't be around him...like not even in the same room. His wife put these ideas into his head...and I am certain she has lyme... her doc tested her for it and she never went back to get the results...but I bet it is lyme...
Wow...so sorry again. One more thing...my husband and I are not sure if we will be able to have kids because of the lyme. We don't want to risk bringing a lyme baby into this world bc we know it will suffer, but on the other hand, we REALLY want children of our own. In fact, if lyme had never entered the picture, I would have finished my last year of college, and we would be trying to get pregnant right now.
That said, I have been totally devastated (so selfish, I know) but the number of people I know getting pregnant. I know this sounds so elementary, but my sis in law had one, my sis has one and is pregnant, my cousin, my "step" sister, numerous friends, etc etc etc...and it is breaking my heart! I AM happy for them, but at the same time I am so jealous it hurts. I have always wanted to be a mother, but I don't know if it will happen. But, at least we will always have adoption as an option! I am very willing to give that a shot, but I would still like to have at least one of my own if possible!
Thanks so much for the responses. It really means a lot to me that people care. It seems people who really care are hard to come by lately (other than my hubby and his entire family!).
Good luck to you all and thanks for listening to my ranting...again.
It feels so good to get it all out sometimes
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Jackie