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Old 11-22-2012, 09:19 PM   #1
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Potential Lyme Disease - Northeast Pennsylvania

Hello,

This is my first post on the forums. My last few weeks have been treacherous. Please allow me to share my lengthy story.

I live in Northeastern Pennsylvania and have been an avid camper and outdoorsman since I was a kid. Due to my love of the outdoors i've encountered my fair share of tick bites, mosquito bites, and you name it.

The 3 ticks that i've actually found and removed over the last 8 years (i'm sure there have been more attached that i've never even been aware of) the tick has always been attached to my person for 24 hours or more.

I have never even really considered that I may have Lyme disease, nor have I been tested for it, that is, until I started having severe and unexplained symptoms. I just turned 26 and I have a lot of the ailments my 60 year old parents have!

I've had symptoms to a lesser degree for years now.
Those symptoms include:
- General brain fog.
- Problems focusing.
- Muscle spasms. All over. Random. Change in locations.
- Random joint pains (never unbearable)
- Swollen lymph nodes in jaw line.
- Stiff neck.
- Sound of cerebral fluids moving in my neck.
- Lower back pain.
- General Fatigue.
- Swelling or fluid build up in 1 knee (never injured)
- Severe calf cramping.
- Problems focusing on my work and affecting my work. Night/Day compared to the high level I was at last year.

Recent and Persistent symptoms:
- Extreme fatigue.
- Random episodes of this dizzyness/brain fog/weakness funk where I can't function.
- Shakes in hands.
- Twitching everywhere. Sudden Jerks. Mainly eye, toes, arms, neck muscles.
- Pressure and face numbness off and on. Moves around.
- Headaches.
- General Anxiety.
- Odd pains all over the body.
- Odd pain in 1 spot on the top of my head.
- Blurred vision.
- Loss of focus in vision that is hard for me to reestablish.
- Stumbling/coordination issues.
- Accelerated pulse.
- Throbbing blood in veins.
- Variations in blood pressure.
- Frequent tingling in right side of back that really comes on when standing up.
- Flushed/red upper arms.
- Itchiness all over.
- Tightness in throat at random times of anxiety as well as relaxation.
- Forgetting things.
- Doing a normal daily task and doing it wrong without realization or thought.
--- all this stuff causing me to be hypochondriac about my body ---

Like I said, i've just been living with those issues thinking they were normal for everybody. My wake up call and scares started this Halloween when I was attending a party and became extremely fatigued during the party for no apparent reason. The only thing I could think of is that I ate 2 slices of pizza and my body was reacting to the carbs. Maybe I could have diabetes. This was the first time I encountered this feeling at such a high level, seemingly out of nowhere. Red Flag #1 was raised.

A week or 2 went by without an episode. Maybe I was a little more tired than usual, but I still figured this was all normal. My next event was even more frightening. It was the day after my birthday, election day. I had a large dark coffee for breakfast and worked through the day. Heart burn started up during the afternoon from the coffee and I was paying closer attention to my vitals. After work I ate my dinner, wild rice and vegetables. While I was eating I noticed my heart was pounding and began to panic. All at once it felt like my full adrenaline reserves were released into my body and I went into what was my first severe panic attack. I thought I was having a heart attack and checked my blood pressure mid-attack. It was up to 160/100. I was freaking out to my girlfriend. I layed down and together we somehow calmed me out of this horrific panic attack.

The next day the anxiety and issues persisted, but something was different. I was getting, what i'll describe as a mix between vertigo, lightheadedness and being spaced out. My vision would blur off and on. I would stare off and lose all concentration with the inability to regain it. Definitely anxiety, but definitely also, some underlying issue that I could not determine. I immediately called and scheduled an emergency dr's appointment.

I went the next day I met with the Dr. and had bloodwork taken. She didn't seem to think or understand that I was in such dismay and basically told me we'd see if anything is going on when the tests come back and shipped me home. During the rest of the day I felt fine. My mind was off the subject. I went out with my family for a late birthday dinner. On the way there the "episode" happened again, seemingly out of nowhere. Dizzyness, extreme fatigue, staring off into space, unable to focus... Then panic. This time was different. Now I had a numbness creeping up into the left side of my face. We had to leave the restaurant and I went to the convenient store to get orange juice and Gatorade to chug thinking maybe somehow my electrolytes were dangerously low. Somehow this brought me back down to reality. I felt so bad that night I took off the next day of work and stayed home to rest. To my dismay the extreme fatigue and symptoms were not going away. The numbness and pressure in my head and face was getting worse, as was my panic.

I went up and down Friday during rest. Saturday the ill feelings were extreme and Sunday the left side of my face was so numb I couldn't feel it. This was when I decided something life threatening might be going on and pleaded with my girlfriend, an ER nurse, to take me to the ER. I went in and my BP, was again, 160/105 range. I was again panicked over the things going on with my body. The ER doctor really just scratched his head at me. During our discussion I told him I drank 1-4 times a week usually 6ish beers when I did drink. Always socially. He decided to diagnose me with anxiety and alcohol withdrawal and release me. About the only thing he did do was prescribe me 10 pills of Ativan to mask my symptoms. They also took more blood work and did a CT scan for reference. All normal.

I decided to work from home the following Monday since I was still feeling whacky. I felt somewhat better again, but still pretty fatigued and disoriented. The numbness in my face was still there but not as strong. My primary physician's office called and told me all the blood work was back. My vitamin D was low, cholesterol slightly high, and my skeletal muscle enzymes were high, and everything else was normal. This included thyroid check, diabetes check, kidney and liver, etc. Also normal 24 hour urine tests that I had taken at the Dr's request.
I got prescribed a vitamin D pill and a Methylprednasolone (steroid) pack for the back pain we talked about during my visit. I started the steroid pack that night and almost immediately the face pressure and numbness went away. The back pain was gone also. I still felt like crap but now I at least had some energy and the dizzyness, pressure and vertigo were almost non-existent. The Dr.'s office bumped my followup up to the next Monday after hearing I went to the ER.

I went back to work and was able to make it through the next few days. My co-workers commented on how I was pale and looked like I was dead. I began to search for blogs and websites for reasons for my symptoms. That's when I suspected perhaps it could be Lyme. I recalled finding an engorged tick in my hair late this summer and pulling it out unknowing what it actually was until I yanked it out with my fingers. Well I kept telling family and co-workers that something was wrong and that I was frustrated that I could not figure it out. They labeled me a hypochondriac. I agreed. I was desperately searching for an answer. Could it somehow be alcohol withdrawal? Is it all in my head? Am I just anxious? What is even making me anxious? I can't live like this. This sucks.

Well skipping ahead. I started getting flushed face, extreme flushed arms, and tingling in my back after day 2 of the steroid. If I do indeed have Lyme the steroid gave it the opportunity to run rampant in my body. I'm days off the steroid and the redness in my arms and extreme tingling in my back are not going away. I went back to the Dr. this past Monday and we had a long discussion on what was going on with me. I wanted to ask for a Lyme test and it was my #1 priority going in. I somehow forgot to even mention it during the 30 minutes we talked! She told me I was young and my tests all came back normal. Lose some weight. Exercise and don't exercise hard because she didn't know why my back would be tingling or why my muscle enzymes would show high. Perhaps I was working out too hard? Maybe it was anxiety? She prescribed me 15 Xanax and told me to stop worrying, everything is fine. She then told me not to take the pills if I didn't need them and they'd check to make sure I didn't try to refill more. When I told her about the ER doctors alcohol withdrawal diagnosis I think she thought I was a junkie and was just trying to get a prescription to the highly addictive pills. What a joke. I came for help. I don't need or crave alcohol and I absolutely don't want to be popping pills to cover up whatever the real issue is.

Well I called the very next day (since I forgot) and asked for them to put in for a Lyme test. They said that would be a good idea since I did get bitten by some ticks. I asked the nurse which test it would be because I read that the ELSIA test wasn't that accurate and that the western blot test was better. Her response, "the test we're sending you for is more accurate than that." So I went for the test expecting some elaborate test. Nope. ELSIA was ordered with notes to resend for the blot test if that one came back positive.

Apologies if my description and story here didn't flow very well. I am usually a good writer but my mind just doesn't seem to be firing correctly the last few weeks (months.) Trying to stay positive. I guess reading this over does make me sound a bit crazy but it was a good way to vent. LOL. In may case the symptoms were there before the anxiety and craziness. So there's that.

I thank you if you took the time to read my short novel. I guess the only questions and advice are:
- Do you think this could be Lyme?
- If not what might be going on?
- What should I do if the ELSIA comes back negative?
- Do we know of Lyme literate doctors in Northeast PA?
- Any other feedback appreciated.

 
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Old 11-23-2012, 04:18 AM   #2
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jenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB Userjenj770 HB User
Re: Potential Lyme Disease - Northeast Pennsylvania

Quote:
Originally Posted by BenRo View Post
I thank you if you took the time to read my short novel. I guess the only questions and advice are:
- Do you think this could be Lyme? Yes
- If not what might be going on?
- What should I do if the ELSIA comes back negative? See Below
- Do we know of Lyme literate doctors in Northeast PA? there have been many here from PA. You might read over some of the past posts
- Any other feedback appreciated.
Well, I didn't read every single word but enough to concur with your instincts that it is probably likely that you have Lyme Disease. The symptoms you describe are not uncommon for many of us.

You need to do your own research to find an LLMD because we cannot post doctor's names here. But, absolutely, this is what you need as all these other doc's are only delaying your proper care with misinformation and wacky treatment. If you cannot find an LLMD a good Naturopathic doc would also work. One more caution. Steroids are off-limits for lymies. They will only compromise your already compromised immune system!

Please read the sticky at the top of this board titled "Lyme Newbies" and the one with suggestions as to how to find an LLMD.

I hope you find the help you need.

Jen

 
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BenRo (11-23-2012)
Old 11-23-2012, 08:45 AM   #3
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Re: Potential Lyme Disease - Northeast Pennsylvania

Ben:
Sounds like Lyme to me. Wait until your tests come back. I would get tested from the lab in california. Igenix. Also go to a LLMD. Let us know what happens with your results. LaLa

 
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BenRo (11-23-2012)
Old 11-23-2012, 01:58 PM   #4
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Re: Potential Lyme Disease - Northeast Pennsylvania

Thanks for the responses. Patiently awaiting the test.

 
Old 11-23-2012, 05:31 PM   #5
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Re: Potential Lyme Disease - Northeast Pennsylvania

Hi

Your story sounds so similar to my own, I would seriously consider seeking out an LLMD as soon as possible.

There can be long waiting lists for good LLMD's so the sooner you can get on the waiting list the better.

My LLMD is actually based in P.A and I am making good progress. Unfortunately I am unable to post names here, but I am sure if you do a search it will come up as she is very well known.

In the meantime you could ask your Doctor to consider the Iginex testing, the Elisa is extremely unreliable, I was negative 3 times!

Lyme Disease is not always diagnosed based on testing alone. It can often be a clinical diagnosis based on symptoms and history, which is supported by tests.

Good Luck!

 
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BenRo (11-24-2012)
Old 11-23-2012, 06:05 PM   #6
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Re: Potential Lyme Disease - Northeast Pennsylvania

Hi

Your story sounds so similar to my own, I would seriously consider seeking out an LLMD as soon as possible.

There can be long waiting lists for good LLMD's so the sooner you can get on the waiting list the better.

My LLMD is actually based in P.A and I am making good progress. Unfortunately I am unable to post names here, but I am sure if you do a search it will come up as she is very well known.

In the meantime you could ask your Doctor to consider the Iginex testing, the Elisa is extremely unreliable, I was negative 3 times!

Lyme Disease is not always diagnosed based on testing alone. It can often be a clinical diagnosis based on symptoms and history, which is supported by tests.

Good Luck!

 
Old 11-23-2012, 11:03 PM   #7
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Re: Potential Lyme Disease - Northeast Pennsylvania

I concur with everything that everybody replied with. I would find an llmd ASAP. Your symptoms are identical to what mine were. The drs thought I was crazy. Do not let anyone tell you that you are or that you are a hypochondriac. It is real and what you are going thru is horrible. I've been right there with all of your symptoms. Get tested thru igenex. Best of luck - You can get thru it

 
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Old 11-26-2012, 03:21 PM   #8
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Re: Potential Lyme Disease - Northeast Pennsylvania

Well I got my ELISA test back today and it was negative for Lyme antibodies. I told the nurse that I still felt like crap and was pretty much unable to function all Thanksgiving break. Maybe it could be the anxiety... The Xanax seems to help quite a bit.

At any rate I scheduled a followup with my Dr. for tomorrow to ask for further testing. I'll bring up western blot and IGENEX testing but I doubt she'll have any clue what that is or know how to interpret the results... If I decided on that test I read you could actually order yourself a test kit from the lab in CA. Has anyone done this? Anyone sure on the cost?

I'd like to bring her some form of credible documentation that outlines why ELISA is not an accurate test. Anyone have a link to something like that?

I'm also wondering what else would be useful to test for besides Lyme. I've had CT scan and just normal blood work. Nothing else at this point.

I did find a couple of LLMDs in Northeast PA. Neither seem to take insurance. I don't want to waste money if this isn't Lyme. Still weighing my options at this point. All I know is i'm having crazy symptoms.

Thanks,
Ben

 
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