I am so sick of being told it is all in my head

I am so sorry that I have to vent here, but I guess I have nobody to turn to :(
I just got back from my family care doctor and after she told me they have the results of my western blot test I asked to see the lab results.
Guess what??? I get a paper all it says is
Lyme Disease borrelia burdorferi AB negtive. ref range negative.

Nothing else!!! First off this is not a Western Blot test and second what kind of test is this anyways if you don't even get a number for your AB titer.

So I asked her to please sign the papers for Igenex and she just said No! You don't have lyme disease get over it. Sometimes we just can't find a cause for your symptoms. Get over it.

I truly felt like I got slapped in the face. I have been sick since July from one day to the other. I have had a Negative ELISA test and now this weird test. Yes, but I have all the symptoms for lyme, so should they not take me a bit more serious.

Here a list of my symptoms, they vary. So every day I get a little surprise :(

-headaches (they feel like I have a rubber band on my head)
-twitching all over my body
-low grade fevers
-joint and muscle pain
-burning of skin
-feeling like a lump in my throat, along with shortness of breath
-extreme fatigue
-nausea
-swollen glands
-muffled hearing
-vision problems
-foggy brain

so, I hope I did not forget anything. This is such a nightmare, it seems like nobody wants to help me. They ruled out MS and ALS. I had a CT and MRI of my brain and my nerves tested at the neurologist. My thyroid is level is at 3.8 and they said it is normal. They pretty much told me today that anxiety can do all this. I never had anxiety before I was perfectly fine and now I am so sick for such a long time that every day becomes a struggle.

I contacted the LLMD in Austin and hopefully I will get an appointment, my kids need me and right now I am just so exhausted as being looked at like I am crazy.

Thanks for listening
Sonne

Your symptoms could be lyme related or even co infection (bartonella, babesia, mycoplasma, ricketsia, rmsp).

please please please do not lose hope becuase of an igonart doctor. There are many doctors out there that are call LLMD (lyme literate medical doctors) that are specialists in lyme disease.

these doctors will use blood tests as a tool but ultimate treat the entire patient instead of just attacking symptoms. I am currently seeing am llmd after contracting lyme disease while successfully thru hiking 2587 miles from alabama to maine.

my symptoms were intense head pressure, nausea, extreme fatigue, neck and back pain, foot pain, and dizziness. It wasnt until I got to my llmd that I started to revieve the proper antibiotics and care that I needed.

You are on the right track by getting an llmd.

are you taking any antibiotics right now? Supplements? Herbs?

alot of people have good success with the buhner protocol, or cowden protocol while they are waiting to see an llmd. Currently I use a combination of both protocols and antibiotics.

Please let me know if you have any other questions. If I cant answer them someone on here can and there are many amazing moderators that are super knowledgable. I cant tell you how much I have learned from this site.

also no doctor knows you body the way you do. You are not crazy. So many lyme patients are neglected and miadiagnosed. Good for you for not taking no for an answer.

A thyroid tsh of 3.8 is not necessarily normal, it justvfalls into an old range that many des dont realize is in appropriate yo assess thyroid function.

Yup - dump the Dr. I don't know why the Docs think that after being healthy and happy and handling stress all our lives...that all of a sudden we get all the symptoms because we have anxiety...just ridiculous.
Even now, when I tell people that I had anxiety as an initial symptom...they think it's because I was worried about all my other symptoms...but no, it's actually a symptom from lyme.
The twitching and throat lump are two more symptoms I had initially.
After treating for a short while, my anxiety cleared up...and I am still worried, stressed about my condition...so it's obviously FROM lyme, not from being stressed out. Although, that can worsen the anxiety.
The only time my anxiety comes back is when either my symptoms are flaring, or I'm herxing.

Please find a LLMD a.s.a.p. and let him/her diagnose you.

Thank you all so much. I feel so welcomed here and please don't take this the wrong way, I am gald I am not alone in this.

After 4 months of being really really sick, some days I can't even get up I am just so exhausted. I have seen so many docotors and every single one just told me "I don't know what you have"

My doc denied to sign off the papers for Igenex. I am currently waiting to get int the waitlist for a doc in Austin and also in Bedford. Which ever opens up first.

This disease is so unpredictable, I tend to have 2 or 3 good days a month and then it hits me right back. Sometimes my arms are so heavy I can't even lift them up right.

On other days they feel feather light but feel super shaky... My knee joints swell up on another day. This is such a chaos of symptoms. From twitching to tingling to burning sensations...

One day I see fine, the next my vision is completely off... Most recent like I mentioned the feeling of the lump. Accompanied by anxiety and swallowing problems...

I just had a major meltdown and cried and cried and cried. I just wanted to get all these emotions of the past months out. Now I am back in bed again, my heart is racing my face is twitching and my leg feels like somebody is stabbing me with a knife.

Looks like I am in for another sleepless night, like so many in the past months.


Thank you so much for listening. :)

Sonne79 said...

leapyear said...
Hi Sonne79...your in Texas?? So am I...what doctor are you going to in Austin? is it the wellness center? My DR told me you can't get lyme in texas...so yea its really hard to get drs around here to listen and even consider it...i just saw that you are in killeen....crazy thing so am I...maybe we could meet up and compare stories

I would love to get in touch with you :) Can you email me?

Sonne79 you don't have your email address enabled for me to see it! Mine is enabled so please please email me!