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Old 09-19-2012, 07:58 AM   #1
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Unhappy What is wrong with me! Long post sorry...

I'm Beth 33 yo mother of 2. I've been throught the ringer for the past year, so I will start at the begining of all this nonsense. Last year in June, I found a deer tick on my inner thigh (I live in ocean county NJ, high occurance of lyme). I removed the tick, cleaned the area and kept an eye on it. Couple days later it became very red and itchy, and the area increased in size. Went to my GP and she ran a plethora of labs including WB. Results came back IgG negative 0 positive bands, IgM 23 Ab positive. My doc didn't want to take any chances and prescribed doxycycline. I completed the cycle of antibiotics and felt ok (although I felt extremely terrible while taking them).

March 2012. Back to my GP for increase of frequency and severity of migrane headaches, fatigue, blepharospasm, joint pain, weakness in arms, legs, heart palatations, anxiety ect. Reffered to a neurologist. MRI revealed a small lesion near the basal ganglia. Follow up mri to be preformed November 2012. Prescribed nadolol 20 mg a day to prevent migrains (and it is working).

July 2012. (Bitten again by another deer tick July 2) Back to GP. Trouble swallowing, feeling a lump in throat for 2 weeks. Irregular menstral periods for 3 months. Chronic constipation, unexplained weight gain. Fatigue, cold blue hands and feet, anxiety, eye spasms getting worse since March, body aches, hair loss, pain ringing clicking in ears. visual disturbances, back pain. Thyroid enlargement. Thyroid ultrasound and more labs including WB. U/S report : Diffusely enlarged thryroid, heterogenous echotexture. Enlarged isthmus. 2 CM dominant moderately vascular nodule in right midpole. Suggest Fine Needle Aspiration cytology.

August 2012: FNA Complete. Paucicellular sample, inconclusive. (thyroid panel normal). Repeat U/S and FNA January 2013.
Labs WB: IgG no banding present. IgM: IgM P41 Ab present Abnormal. IgM P23 Ab Present Abnormal. Lyme IgM WB Interp. Positive Abnormal.

September 2012: Trip to ENT surgeon for laryngoscopy (dysphagia) and to schedule FNA. I now Have GERD as well.
GP: 9/17/2012 Double ear infection. ENT suggested treatment for lyme. GP wants me consult with an Ifectious disease specialist. Unsure if I have lyme because IgG was negative and IgM was positive. ( possible autoimmune disorder?)

At this point I just want to cry all the time. I don't know what is happening to me, I was always pretty healthy never took medications. Now I feel like crap all the time. Am taking beta blockers, nexium, antinflamatory drugs, and anti anxiety meds. I don't know if I have lyme, lupus, MS, and now thyroid cancer. Maybe It's a combination of things. Can you have lyme if the IgG is negative and IgM is positive? I tried making appointments with LLMD's in my area and they do not take insurance. They also want payment at time of appointment, and I do not have that kind of money. Can anyone please help me?

 
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Old 09-20-2012, 06:38 PM   #2
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Re: What is wrong with me! Long post sorry...

Well I have an appointment with a infectious disease specialist. On the 26th. I hope he knows what he is doing.

 
Old 09-21-2012, 07:45 AM   #3
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Re: What is wrong with me! Long post sorry...

Bethany, sorry your going through all of this. Lyme mimics, but I like to say, can cause over 300 conditions.

Infectious disease doctors do not treat lyme or any of their co-infections properly. I went to 3 of them. And they poohed the idea of me having lyme. Here I was sick like you, weak, hardly walking...and was told NOPE it's not lyme. ugh

So I wish you luck going to a ID doc.

There are reasons why LLMD's don't take insurance. Lyme is a very political disease. And insurance companines do not want to pay for the treatment.

The only proper treatment to get is from a LLMD. OR you can do alternative where you won't need a LLMD. But a doctor to run labs on you to watch your liver, kidneys and such.

Like many of us, to get well. We can't always rely on insurance.
I lost my job, because at that time I had NO idea what I had or who to go to. So I hopped from one doctor to another. Years of that. One doc put me on 14 prescriptions at one time. Uppers, downers, antidepressants, ect. I was on nothing to help the problem. Because none of them knew what I had.

Credit cards have been a handy item for me. Only way I could of gotten better. Now I have lyme chronically.

Hope your appt goes well.

Jodie

 
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Old 09-21-2012, 08:02 AM   #4
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Re: What is wrong with me! Long post sorry...

[QUOTE=jojo;5059641]Bethany, sorry your going through all of this. Lyme mimics, but I like to say, can cause over 300 conditions.

Infectious disease doctors do not treat lyme or any of their co-infections properly. I went to 3 of them. And they poohed the idea of me having lyme. Here I was sick like you, weak, hardly walking...and was told NOPE it's not lyme. ugh

So I wish you luck going to a ID doc.

There are reasons why LLMD's don't take insurance. Lyme is a very political disease. And insurance companines do not want to pay for the treatment.

The only proper treatment to get is from a LLMD. OR you can do alternative where you won't need a LLMD. But a doctor to run labs on you to watch your liver, kidneys and such.

Like many of us, to get well. We can't always rely on insurance.
I lost my job, because at that time I had NO idea what I had or who to go to. So I hopped from one doctor to another. Years of that. One doc put me on 14 prescriptions at one time. Uppers, downers, antidepressants, ect. I was on nothing to help the problem. Because none of them knew what I had.

Credit cards have been a handy item for me. Only way I could of gotten better. Now I have lyme chronically.

Hope your appt goes well.

Jodie
[/QUOTE
thanks Hun. I actually just found a doc not too far from me using one of the llmd searches. And amazingly he takes my insurance. He is also a Iliads member and has some publication about lyme. I have an appointemt for Monday!

 
Old 09-21-2012, 08:06 AM   #5
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Re: What is wrong with me! Long post sorry...

Fantastic...hope you feel better soon!

 
Old 09-21-2012, 08:09 AM   #6
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Re: What is wrong with me! Long post sorry...

Quote:
Originally Posted by jojo View Post
Fantastic...hope you feel better soon!
Thanks sweetie! I was told my western blot was lyme positive even by cdc standards. You don't think I will need more tests do you?

 
Old 09-21-2012, 08:21 AM   #7
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Re: What is wrong with me! Long post sorry...

You want to get tested for co-infections. Talk to this new doc about it.


 
Old 09-21-2012, 08:35 AM   #8
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Re: What is wrong with me! Long post sorry...

Quote:
Originally Posted by jojo View Post
You want to get tested for co-infections. Talk to this new doc about it.

Okie dokie. Thanks again. It's funny, I am kinda excited to be going to the doctor. Usually I dread it.

 
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