posted
Hi everyone, I'm new here and wanted to share my story. I'll try to be concise, but no promises.
I'm hoping to connect with people to share trials, tribulations, and successes.
I'm 29. I moved to MD in Summer '07 from Philly. Lots was going on that summer, so it is hard for me to say for sure when I got sick.
I don't recall a bite or a rash. After ignoring little symptoms for months, I 1st saw a physican about weird tingling and pins and needles in Jan '08.
I had a lot of blood work, including a (neg.) Lyme screen. My white cell count was slightly high, but all else was normal.
I was sent to a neurologist. I had an abnormal brain MRI, but my neuro told me it was normal and that I was depressed.
I saw a 2nd neuro in the spring, and I told him my MRI was normal (since that is what I was told). He told me maybe fibro.
I kept returning to my physican with more problems, mostly neurological and sensory.
I have a lot of trouble concentrating, and get feelings of intense heat, pressure, and vibration/tingling in my head.
By spring, I also had flashing lights and pain in my eyes when I moved them, and mild double vision or ghosting, as I call it.
I reformed my lifestyle by quitting smoking and drinking, became a vegetarian, and exercised as much as I could. I had no fatigue at that time.
I saw a 3rd neuro. This time I brough my MRIs and reports with me, and he said my brain MRI was NOT NORMAL.
He was very concerned about MS. He ordered a repeat MRI and a lumbar puncture. He said if the MRI had any changes or if the LP showed anything, he would diagnose MS.
The repeat MRI was the same as the 1st, with many white matter lesions but none that enhanced. The LP was clear.
He did more blood work, and a 2nd Lyme screen. It was negative, the only off number was elevated c-reactive protein.
He then told me I may have fibro.
I was put on neurontin, which worked for awhile but then I had more problems with heat/pressure/pain and tingling, esp. in my head.
My physician put me on oral steroids, and for a few days, I got 100% better.
When my symptoms returned, I again asked her about Lyme and if I should be re-tested and she said no, and said re-testing leads to false positives.
This was before I knew the difference between ELISA and Western blot, so I accepted her word.
I tried Lyrica but it made me loopy. I went back on neurotin, it at least helped me sleep.
Next, I traveled out of state to see a neuro at a univeristy in hopes of getting a better interpretation of my MRI and other tests.
Around that time, Fall '08, I started getting stiff all over. Worse in the AM, it gets a bit better with exercise.
I also started to get the worst fatigue of my life, though I bet I have it better than lots.
I also started to be nauseous for several hours a day.
The 4th neuro just said to repeat my brain MRI every 6 months and hope for the best.
Because of my joint pain, he sent me to a rheumie.
The rheumie said I appear to be coming down with an inflammatory disease. This was over a year after I started to feel sick.
The rheumie could see changes in my joints and could tell they were swollen. She said I don't have fibro because you can't see fibro.
I quit neuronin about this time since I was so confused.
They ordered lots more blood work. Now, my blood work shows:
(very) low Vit. D
Elevated SED rate (it more than tripled btw July and October '08)
Slightly high c-reactive protein
Thyroid antibodies (Hashimoto)
All the specialists and my physican say that I do not have Lyme, but since I never had a Western blot, I am not convinced.
I researched and found a local LLMD and already saw him. I gave blood yesterday to re-test the stuff above and to get an Igenex Western blot.
Other tests were ordered, too. The LLMD gave me a clinical diagnosis of Lyme and Rx'ed antibiotics (Minocin) and has me on supplements.
I probably won't have my recent blood test results until the end of the year.
I mention some of my symptoms, but really to list them all would take several more pages.
I am exhausting all of my leave options at my job, and can not function normally.
The f-word (I hate to say fatigue) is making everything hard, esp. staying positive.
I wish I had pushed the possibility of Lyme sooner, but I really trusted what my doctors said.
I know this is long, but I wanted to share this so people can get to know me and to see what people think.
Any advice or comments are most welcome, hopefully I didn't put you all to sleep with this long post!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Welcome
I am so glad you finally found a llmd.
You sound like you have read about lyme but just in case you didnt know...
when you have lyme and go on antibotics you can feel sicker . it is called a herx reaction (abrevatied name). Basically when stuf dies toxins are created and if our bodies cant keep up with clearing it we feel sicker...
but it means we are killing it and getting better.
Unfortunately, you are not in the minority on how long it took to get a diagnosis. Being told the things you were told is not uncommon when you have lyme. I hope you get some answers soon.
Did your dr tell you to take probotics?
my vit d was low too. but it came up with supplemets. It is in the normal range now
My story is almost a duplicate of yours. I just got a clinical diagnosis after YEARS of being sick, I am 32. My Igenex results are due back in a week or so but I have had other bloodwork that has come up negative every time with my regular doctor. I just found a LLMD.
Welcome, you are in the right place!!
Jenny
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Welcome. I would also encourage you to visit our Lyme Chat which is every night. There are posts about it in General and Medical at the moment.
There are several from our area on the chat, so you would get to know some of the locals a bit better.
You went through what many of us did, so don't feel bad about that. Now that you have a LLMD you can focus on healing.
How long have you been out of work? You may want to start filing for SSDI. That would be a whole other post, though!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I want to state that my intention in posting my saga wasn't to indicate that I think I've been through worse than others.
I just wanted to finally be able to state the mess among people who get it.
I'm lucky to have supportive people around me, but when I kept going from doctor to doctor, I did start to attract some strange looks.
It was really my own research that brought me back to thinking Lyme. I initially trusted that it was ruled out, and did repeatedly ask about it!
I'm still working, but am in the process of changing my status from full to part time. I hope that will assist my recovery by taking some stress off.
The chat sounds great, I'll need to try and join this week!
--> This is my favorite icon. It is how I feel for not figuring out to see an LLMD sooner!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
It's a travesty, the run-around we get from the medical folks. Shouldn't have to be this way.
We are all different in how we respond to meds. For me, I am successfully (as in feeling better) treating fibro and swollen joints with clindamycin antibiotics. The pain and swelling goes away rather quickly. I do 150mg 3-4x/day.
Posts: 13116 | From San Francisco | Registered: May 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Wonko. I'm sorry you have had to go through the pain of misdiagnois. Unfortunately, it's a common story.
My daughter was 15 when she started getting ill, 17 when she finally got a diagnosis.
It's a marathon, not a sprint. The treatment goes against most of what you know about antibiotics. You will feel worse for a while. Think of it as chemo.
Make sure you get a good probiotic, drink lots of water, and sweat.
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