posted
I finally got an LLMD to call back and they got me in next Tuesday, the 17th.
Since taking a medrol dosepack about 5 weeks ago things have gotten progressively worse.
My symptoms are mostly fatigue and cognitive issues. (really severe)
Now I am losing sensation in various parts of my body and my hand is tingly. I can't feel my lower back (skin surface not paralysis like), right cheek, and forehead. My left hand is pins and needles.
Should I call to see if they can fit me in sooner? This is really new but if I wait until next Tuesday will it progress to be worse?
Thanks for the help.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
My symptoms got much worse after being on a medrol dose pack as well.
But, the symptoms for me did level out... I understand the feeling that the symptoms keep progressing and questioning when will it stop? will it stop getting worse?
I was thinkin MS or ALS initially.
After awhile some of the symptoms have actual gone away (although I don't know if they are gone permanately or just intermintly)
Each person is different, so there is not an easy answer here...
The steriod treatment let the Lyme go crazy. Most people on here will tell you that they will never go on a steriod treatment unless it is a case of life or death because of how lyme reacts to it.
Once you go onto a good dose of abx these symptoms will start going away.
I hope that you get into a good LLMD, that treats you proper... NOT with only 2 weeks of doxy... thats not enough!
my opinion.... not a dr
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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Were you working? I have been chasing the wrong diagnosis for more than 3 years now, even though as part of my bloodwork I was tested for Lyme. Nobody ever took it seriously or as a "primary" explanation for my symptoms.
I need to make a decision about work. No disability needed, I have my own business and can take time (though without pay). I just can't do it....I feel like I need a dx then I can make some decisions. In the meantime I am functioning poorly and hoping I am not embarassing myself while working.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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I graduated in the spring of 2009. Had major surgery in the fall of 2009, and that's when my symptoms started coming out.
They looked at auto immune disease for me as well. Lots of negative tests.... very frustrating.
Then in February I had a bought of pain with eye movement in my left eye but without loss of vision. Still at that point I was thinking MS. A few days later I got to the dr. The pain was gone, but a general feeling of something not right was still there behind the eye..
so that's when I was prescribed the medrol...
and I started having the numbness, tingling, burning, muscle weakness, muscle stiffness, blurry vision increased. The memory issues got much worse which includes speech.
So, anyway. I am in my thirties, I have been a single mom for 2 years now... I have a degree in which starting pay is about $50,000... but, I can't work... in that field or any. So, I am broke and living off the system and trying to figure out how to get into a good LLMD instead of the uneducated one that I am currently seeing.
I understand about wanting to wait for a diagnosis before making any desisions. I did that for 8 months. It sucks not knowing what to do.. living it one day at a time, putting off decisions.
I am currently needing to move from my current location (I am in a second floor apartment) and want to move closer to my parents my only source of help in the state (but they might be moving) but, also want to be close to whatever new LLMD I choose.
My point is that you are still going to have some big decisions to make.
Also, I am not a doctor... but, there is no doubt in my mind that you have Lyme!!!
You have not been properly treated in the past!!!
I hope that you are seeing a different doc than you saw in the past
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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I pray that you find a good doctor and are able to feel well enough to go to work and be a mom.
You sound a lot like me. They have been definitely looking at autoimmune for me for 3 years now. Everyone wants to say "depression" but never ever dug further into the infectious part that kept coming back positive.
I did have a bite, but all was ok until I had surgery and I crashed big time after that. I can't believe how awful I have been feeling. I am trying to work but I feel like I am faking it and behind the scenes I am not living up to the professional I should be. I work for myself otherwise I would have been fired by now!
It must be hard dealing with this as a single mom. I am glad that your parents are around to help. My husband is not overly understanding but I think he tries and at least he is here to help with the kids. I always try to come at it from his perspective. How can I possibly expect him to understand unless he walks in my shoes. And I would never ever want that for him or anyone else.
Best of luck to you. Your insight has been so helpful.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Surgeries, steriods, and stress are big things that bring Lyme out in full force. You sound a lot like me, in my story of finding out I had lyme.... However this is the first time I have ever been treated.
I was bitten as a child, when I lived in California. I have had intermitent definitive symptoms for at least 13 yrs as I look back... Could be longer
(but what's normal in the teenage years??? LOL) I'm not counting those years, but did have severe depression and fatigue and weight flucuations.
Anyway....
I'm sure I will get it figured out as to which doctor to go and see.... I have been doing some research... think I am on a better path now.
I hope that your husband will be willing to go with you to see the LLMD. It should be a very informative appointment. Although, we don't want our loved ones to go through what we are... It is very helpful for them to understand some of what we are going thru.
Especially the things that he cannot see. The mental part of things. Once I knew that I had lyme I sent a link to my mom it was Dr. B's guidelines a 37 page document on treatment and symptoms. I wanted her to be aware of what I was going thru.
But, even if you find some lyme links that explain the symptoms of lyme... which incorporate in what you have.... (because there are tons of symptoms and lots of lists don't have them all)... and add the link to favorites on your computer...
Then at a good time let your husband know that you saved some information for him that you came across for Lyme disease on the computer. And then he can look at it on his own time...
Just a thought. Having a support system at home will make a big difference.
But, You will always have us here at LymeNet.
I've only been on the site for a month... and I love it.
Hang in there. I hope you have a better day today!
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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