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I think I have Lyme...Lost and don't know what to do.

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Posted 4/6/2016 8:08 PM (GMT 0)
Hey everyone, I'm 18 and am just finishing up my freshman year of college. Unfortunately it hasn't been a fun one. The first semester I was so sick all of a sudden out of the blue.. It started with a weird rash, that came and went and went to different parts of my body, it looked like bug bites so I thought that maybe my dorm had spiders or something gross and I freaked out but then I got worse. I had fevers every week, sore throats, migraines, any flu symptom you could think of. It all went away after finals week and then the neurological symptoms started. I constantly have brain fog, short term memory loss, trouble concentrating, forming words, vertigo feeling, etc. (thats then and now). It would get bad and then I would go back to feeling perfectly fine. Now I am in second semester and I have the neurological symptoms, muscle weakness, extreme thirst, low grade fevers, chills, joint pain, sugar cravings(like bad), horrible fatigue, depression; I feel numb to everything, like I lost all my feelings. Help!

I have seen 3 doctors, one was a neurologist that prescribed me seizure medicine.. YES, seizure medicine. My primary care literally laughed in my face.. I had to beg him to give me a lyme test and it came back equivocal, fine.. which scares me. Why am I so sick? and what should I do? They are sending me to infectious disease... Hopefully I'm going in the right direction.
Posted 4/6/2016 8:24 PM (GMT 0)
Hi artsysteph, welcome to our community!

Equivocal is not a negative...what lab was it done at?
Could you post the results of that test...do you have the paperwork?

Equivocal test with symptoms consistent to lyme disease....would be enough for a LLMD to diagnose you with Lyme.
Test results aren't necessary...as the testing is so unreliable/inaccurate...a Lyme diagnosis should be a clinical diagnosis...testing is only a back-up.

I suggest you find a LLMD (Lyme Literate Dr.) - for an evaluation.

I'm sorry to tell you, but usually an Infectious Disease Dr. will not be much help (unless he/she happens to be Lyme literate...which is not usually the case)

We can help you find a LLMD - just start a new thread titled: "Looking for LLMD in/near______" and fill in the blank where you live (city/state)
Posted 4/6/2016 9:04 PM (GMT 0)
Welcome artsysteph and I am so sorry you suspect that you have lyme. Girlie gave you some awesome information and if you have any questions, please feel free to ask.

We have all been in your shoes and we came here searching for answers too.

I really have not heard of an infectious disease doctor treating lyme disease. I wish you would find an LLMD and be evaluated appropriately.
Posted 4/6/2016 9:35 PM (GMT 0)
Thank you so much this has been the most helpful thing i've heard in awhile.
I was really sick one day so I went to the E.R. they gave me my first test which was a Lyme Ab, IgG and IgM Screen (I don't know what that means I just looked at the chart), i went a second time and they gave me the same test, which was equivocal.
Posted 4/6/2016 10:23 PM (GMT 0)
The first test - it doesn't say what the result was?
Lyme Ab, IgG and IgM Screen - I think that's the test name...but not results.
I wonder if maybe it was positive (an Elisa or IFA), and then they did a Western Blot - which was equivocal?
Posted 4/6/2016 10:38 PM (GMT 0)
Welcome artsty steph!

So sorry you had to find us....what a lousy way to start college :(

You've been given great information already and I really hope you'll work towards seeing a LLMD - that's really your only chance of getting a proper diagnosis and treatment.

My signature tells a story of inadequate treatment.

We'll help you along the way for as long as you'd like company.
Posted 4/6/2016 10:44 PM (GMT 0)
artsysteph welcome here. As it was already suggested, the best way to get cured is to find LLMD as soon as possible and start a treatment. I am sure he will be able to give you good protocol and help you to get better.

cd3764, I have one question. why 98%, what are those 2%? I wish you soon become 100% :)
Posted 4/6/2016 11:21 PM (GMT 0)
The first test I took at the ER was the Lyme Ab, IgG and IgM Screen that was equivocal and then I went back to the lab because the doctors told me to take the same test and that came out equivocal again so I'm just waiting to get referred to infectious disease so they can hopefully send me to a LLMD. My mom wants to do it that way because of the insurance, then again does insurance even cover all this Lyme treatment?
Posted 4/6/2016 11:54 PM (GMT 0)
Hi Artsysteph and welcome,

Our insurance covers about half of the doctor visits and whatever mainstream things like EKG, some standard blood tests but nothing alternative.
Posted 4/6/2016 11:58 PM (GMT 0)

artsysteph said...
The first test I took at the ER was the Lyme Ab, IgG and IgM Screen that was equivocal and then I went back to the lab because the doctors told me to take the same test and that came out equivocal again so I'm just waiting to get referred to infectious disease so they can hopefully send me to a LLMD. My mom wants to do it that way because of the insurance, then again does insurance even cover all this Lyme treatment?

Okay, it was the same test repeated.

ID Dr.'s don't usually refer patients to LLMD's. I'd be surprised if the ID Doc even considers lyme as a possibility.
Posted 4/7/2016 12:46 AM (GMT 0)
I waited for id duc ..he said it was a false positive so he wouldnt have to treat ..they will only give 30 days treatment anyway...i wasted two months on that guy...he wouldnt look at me in the store the other day...i wanted to show him my port and scream at his wife but didnt...artsy steph...you caught it early ..you are in good shape...get on buhner ,order your own meds ,educate yourself ,the cheepnis a effective as expensive ,there is no pancea, no silver bullet..but u may try silver..borellia never travels alone you have coinfections ,i think i got mine from a spider bite too...any thing with eight legs. .abx may or maynot work but itbis worth the risk?...have your mom watch under out skin on hulu with you. ..watch justin and cristie on u toob.they spent 320k and 4.5 years....this is no joke it will rob you of everything if you let it.....i saw 32 docs 3 hospitals and a integrative duc or three before a lady with a microscope confirmed it...i almosed believed the id doc...glad i didnt...
Posted 4/7/2016 12:50 AM (GMT 0)

blueberrymuffin said...
cd3764, I have one question. why 98%, what are those 2%? I wish you soon become 100% :)

A few different manifestations of mild paresthesias stand between me and 100%.

Thanks so much, blueberrymuffin!!! I'd like to get to 100% before the 2-yr anniversary of the tick bite in July ;)

I wish you complete healing as well!!!
Posted 4/7/2016 12:54 AM (GMT 0)
There are a few LLMD's that accept insurance but the majority don't....mostly because LLMD's get a hard time from insurance companies for the extensive treatment Lyme patients usually require.

If you have health insurance with out-of-network coverage, you could submit the LLMD's bills to the insurance company for possible partial reimbursement.

Once again depending on your health insurance, lab work might be covered but not necessarily specialty labs (bills for which might get partially reimbursed with out-of-network coverage).

The state of affairs with these infections is pathetic but people heal in spite of it.

Best of luck to you moving forward!!!
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