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Avatar universal

Please help. Possible 15 years undiagnosed

I am now 22. I got bit by a deer tick around age 6-8. The deer tick was embedded in the back of my neck right on the hair line. I awoke not able to lift my head off my bed. My mother noticed the classic bullseye rash. She brought me to the dr whom removed the tick with a scalpel due to it being deep under my skin. He confirmed it was a bullseye rash and tested me for Lyme disease. The test was negative but I believe he tested me too soon!
If I had a bullseye do I have Lyme disease?
My symptoms started 2-3 years ago and I can not get a diagnosis. It is driving me insane. My pcp does not think it is necessary to test me again, she said I would be disabled if I had Lyme disease that long. I think she is wrong.
Symptoms include: extreme fatigue everyday (I struggle to stay awake), headaches almost everyday (drs can not find a reason, very shaky, poor concentration, very painful jaw pain, pain at the base of my skull, reoccurring numbness in my left extremities, vision just became poor for no reason, always lightheaded, constant nausea, everyday back pain, leg pain from just walking up one flight of stairs, frequent uti's, frequent yeast infection, insomnia, anxiety, random facial/chest flushing, low sex drive, psoriasis, and many more.
Please give me a light of hope! I need answers! I am only 22 and I can't even live a normal life.
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Avatar universal
LLMDs who treat a lot of Lyme patients have talked about children whose immune systems hold Lyme in check for years.

The bulls eye rash is definitive for Lyme Disease, so if you were never properly treated, then it's been there the whole time.  You are right in that your doctor tested you too early.  The antibodies often don't show up for a month or so.  What he didn't know is that the bulls eye rash must always be treated, no test required.  Unfortunately, a whole lot of doctors still don't know that.

You need to get tested at IGeneX.  The standard lab tests perform quite poorly early in the infection and also in late stage infection.  They never validated the test on people who'd been infected for years because it's so hard to prove the infection at that stage.  Any rash is long gone and the bacteria have moved out of the blood stream into nerves and tissues, hiding from the immune system, resulting low antibody levels.

IGeneX does more advanced testing and is more likely to find it.

Check out local Lyme support groups to ask about doctors in your state. You may need to travel to get to one, as the strict "official" story about Lyme Disease still holds strong in the upper Midwest.

Since you've had it for quite a while, don't expect to get well right away. It can take some time.  It's a marathon, not a sprint.  But the first steps are finding the right doctor and getting tested.
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Avatar universal
Have you contacted ILADS.org to get the  names of Lyme literate doctors in your area yet? That  may be the only way you'll get a doctor who will not only believe you but put you in treatment for Lyme disease.

I hope you've already done that. (Hint)

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Avatar universal
I'm very disappointed. I hit a road block. There are no medical records since I moved. They destroy records after 7 years I guess. Idk how I'm suppose to make a dr believe me now.
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Avatar universal
Jeez sounds painful and frustrating. I'm in the process of trying to find a dr and past records
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Avatar universal
These microvermin don't like to kill their hosts, your 15yrs, likely with them is little compared to the 50yrs I likely have had them.  It can cause every symptom you've listed given time.   I got my first ticks when I was about the same age, by high school my shoulders would fall out of place.  Lots of other things since then.  Find a doctor a bit more knowledgeable.
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Avatar universal
Yes it is hard trying to make yourself heard. I'm not familiar with why doctors are torn between the issue. That is something I'm going to research. Maybe it'll help me understand why doctors are hesitant.
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Avatar universal
Geographic tongue is a fairly common problem and I haven't seen where it is specifically linked to Lyme----  other than Lyme does a real number on all systems in your body. It could be Lyme causing it or it could be a variety of other things.

I saw geo. tongues when I was practicing as a dental hygienist, but not very many. Sometimes people who used hydrogen peroxide as a mouth rinse (too many times) would get that. But that's not the only reason.

You're not going crazy! But I know that we are made to feel that way sometimes! You're doing the right things by questioning, demanding proof and questioning the veracity of people who should know better ---- but don't. Then there's the political aspect of it! Arggh!

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Avatar universal
Thank you for the positive enforcement. I finally found out what hospital and dr I saw. So I am about to call and ask for the records of that day and test results. I believe I was just brought to the er in upper michigan about 15 years ago. So Mayb they were uneducated. Does anyone else experience a painful "geographical tongue"??
The drs are making me doubt my sanity. I know I'm not healthy!!
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Avatar universal
When I first started having more major problems a few years ago, I had a doctor who also told me he was educated in Lyme Disease. He tested me for it and said the test was negative. More than a year later, I lucked into a rheumotologist who was very familiar with Lyme Disease. Even though I did not test what the CDC would call positive, she said she truly believed I have Lyme Disease.

Sent blood to IGenex and they came back positive.

Not too long ago, I requested all my records from my first doctor. Turns out the negative test he referred to showed strong signs of Lyme Disease, but he simply called them negative. CDC frame of mind.

More tests might cost you $$, but is anything worth feeling how you feel with no answers? I have been checked for everything else you can imagine, all clear. Only Lyme Disease showed. And I have had symptoms similar to yours.

Hang in there and be your own advocate. Answers at least give you a path toward better health. Good luck.  
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Avatar universal
Your current doctor might be 'educated' but he certainly isn't knowledgeable about Lyme disease! There's a huge divide now between the Infectious Disease Society of America and the (ILADS) doctors. The IDSA docs say Lyme is hard to catch and easy to cure. ILADS or other Lyme literate doctors know  just the opposite is true.

The IDSA adherents tell patients that a 30 course of a way too small amount of antibiotic will 'cure' you! ARRRGGHH! That would be true if a person started antibiotics within a day or so of a infected tick bite! Too bad that first doctor didn't do that---- you wouldn't be here now. But---- water under the bridge.

I hope you can find him and I hope he will be willing to send you verification.

Here is the site for a Michigan group. I especially recommend getting touch with a woman (Linda) who is president there. She may be able to help you with a Wisconsin site. Tell her cave76 sent you. :)

http://www.mlda.org/
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Avatar universal
Thank you, you are all very motivational. I had an MRI last year because I thought it may have been ms. My grandfather has ms so right away I thought that was the case. The symptoms seem somewhat similar. However, they found no abnormalities. I was greatful but frustrated that I still had no answer. I'm already in debt with medical bills at 22, I won't let money stop me. I will keep asking and complaining till they believe me.
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Avatar universal
Hi Olivia, sorry you are not getting the proper diag. get use to it! its not the end but hopefully you will find the right doc an LLMD is the best way to adress your issues, they can percribe some anti bx and within 6 mo you should notice a change, especially at yoiur age I am 52 and made the fatal mistake of getting an mri and once they spot liessions or focal spots in your brain area they love to dx you with MS dont let them, it seems to be a great marker for the nuroligist to begin MS treatment instead of treating the infection, beware of the statment you dont have limes from your doc. all he is saying is he does not think you have lymes.. fight a good fight! do youyr own reashearch dont let them scare you with there misdiagnose, you know whats up with your body so fix it,or at least demand that they give it a try with your input. its your money and your body! its worth knowing and trusting your feelings at this stage! get on it!! good luck!!!!
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Avatar universal
Oh thank you sooooo much! I am, as we speak, trying to find the doctor who saw me. He has retired since than and I'm trying to find the hospital he worked for.
Is it possible that maybe the doctor who saw me wasn't educated? Fifteen years is a lot of time for new medical reasearch to emerge. I don't know how educated doctors were back then. I was living in upper michigan when this happened, which I would assume has many lyme cases. Currently I live in Green Bay, wi.
I just want an answer. Honestly, I would be relieved but also scared if I did get a Lyme disease diagnosis. It's hard not knowing. I tried to tell my doctor that it IS HARD to live in my current condition. I have lost my friends from being so fatigued. And many people believe I'm making my pain up.
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Avatar universal
If you had a verified bulls-eye rash (and you did) then you definitely have Lyme disease. If you can, please get a copy of your records from that original doctor who saw the bulls-eye rash.

Having Lyme disease for a long time doesn't necessarily mean you'd be disabled but, honestly, you sound close to disabled from the symptoms you gave us. :(

Many people never test positive and yet they still have Lyme. I won't go into all those reasons now.
And you may have been tested by a lab that uses criteria that is not reliable.

Igenex is the best lab in the U.S. that tests exclusively for tick-borne diseases. But even then---- false negatives are possible.

You definitely need to be seen by a Lyme literate doctor, one that treats via ILADS.org guidelines, which is often a very long treatment course. Go to www.ilads.org and in the upper right hand corner is 'contact us'. Click on that and you will be sent to a form to fill out so that ILADS will send you the  names of 3 Lyme literate doctors in your area.

Be informed that these doctors usually do not accept insurance. (But they will give you a receipt that will allow you to bill your insurance.) They are often expensive and want the money at the time of your appointment. That's a problem for many people but since that's the way of life for Lyme patients------ sigh.

There are Lyme literate doctors who do take insurance or aren't too pricey though.

If you feel comfortable giving us the area you live in, perhaps someone here will know of a good doctor in that area.

Also be aware that there are MANY doctors who will say 'I know all about Lyme'  but are nothing more than shams and should be avoided.

After all that verbiage telling you negative things there IS hope------ and once you start on long term antibiotics you will start to see improvement. I normally try to avoid suggesting how  people should be treated, since I'm not a doctor, but having that bulls eye rash pretty  much confirms that you actually have Lyme and antibiotics are the best way to treat it.

So:
1. Try to get records from that first doctor who verified the bulls-eye.
2. If you have no other doctor who might treat you, go to the ILADS site and request some names.

Please keep us posted. You're story is all too familiar but getting a valid and good Lyme doctor will be a good start for a path to better health.
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Avatar universal
Thank you for bringing some light into my day. Everyone thinks it Is in my head and for a moment I doubted my own sanity
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Avatar universal
Hello!

Sorry to hear about your condition. I am not as knowledgeable as most of the regulars here but between my husband and I, we have had about 90% of the symptoms you listed at one time or another and we both have Lyme and co-infections.

You need to find a Lyme literate doctor. I went months with negative tests even though I found the tick in me and started to have symptoms 2 weeks later.  My Lyme doc did blood work through IgeneX  which is a lab that specializes in testing for Lyme and co-infections.
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