Could this be Lyme???

[Katya4]

I am 21, female. I have had strange symptoms start several moths ago, early December. I am wondering about Lyme.

I have for months been experiencing different parts of my body to have bad symptoms for 3 weeks or so at a time, sometimes at the same time. During an 'episode' they will be much worse. I will get numbness, tingling, burning, feeling of being stung by thousands of bees, and sensation of vibrating in legs. Also weakness. I am a gymnast, and it is ruining my practice. My balance is off, sometimes I become dizzy. I drop things a lot, hard to type (thank god for spell check) its like my hands are discooridinated, and impossible to write.

What throws it off is that I am a gymnast and present well, but not from a gymnastics perspective, in gym I am failing.

Problems seem to get worse or be brought on by heat. I am very intolerant to heat, working out and getting hot causes problems, so does high ambient temperature. I can not sleep at night already because no AC and I end up with the weird symptoms keeping me awake. I am most comfortable at about 55F for sleeping temps. here now it is 78 and its a killer!!! No problems with even most extreme cold though.

I have had MRI of brain and C spine with and without contrast, came back insignificant. Had one EMG but too late to catch symptoms, never get the emg for about 2 months. B12 is perfect, and so was thyroid.

Saw a neurologist today, after 6 month wait, but he said he is stumped because I don't have any lesions or abnormalities. He said I don't fit any physical or psychological diagnosis and his advice was "Just try to ignore it I guess." I was not impressed, especially after waiting 6 months and the guy to never even crack open my file.
To me it is very serious, it is ruining my gymnastics practice and aspiring career as an aerialist.


Boy, long post, tried to include detail without making it confusing.


What ever it may be. I am hoping to get some advice here on what to do, where to go? Any tests I should ask for?

Any feedback is appreciated, and thank you for reading my long article here..

[JackieCalifornia]

Welcome -- sorry to hear what you are going through, and glad to share with you what we ourselves have learned and been through.  

Would you be willing to let us know generally where you are located, such as 'near Chicago IL' or 'southern Florida' etc.  Different localities can have more or fewer rules about how to diagnose and treat Lyme etc., according to the local and state medical authorities, and that can determine how to best find a local Lyme specialist.  

Signing off now for the night, but back tomorrow as soon as possible.  

Take heart!  We have all been where you are with Lyme, in one way or another, and we are glad to help.  ...  after a little sleep.  :)

[Katya4]

Hi! Thanks for the reply!

I am in the northeastern most part of Michigan.

With my symptoms should I get tested?

I don't know if there are any specialists in my state, my insurance doesn't cover out of state under any circumstances. It sounds like you need IgeneX ? test or something. And it doesn't sound like Lyme is easy to treat unless caught early. I think Docs here will scoff at me, honestly, and tell me I don't have lyme.
I tend to get brushed off by docs because apparently I never have enough PAIN, but I have quite a high tolerance, I actually was turned away from the ER when I was 13 with a shattered ankle because I wasn't in enough pain to constitute Xray. I went to track practice that afternoon and snapped my ankle in two just walking onto the field. So my trust in doctors is a little lessened, especially after another almost identical experience after the car accident I had. That brings me to something interesting... 2 years ago in august I was in WI with a friend, we were in an accident in rural northern WI, according to her I was left lying in the tall grass for over an hour before anyone came to look at me.
That was two years ago, but is it possible I could have been exposed right then and there??? August is tick season, and I hear its bad in WI.

If i was exposed it would have to have been before September of last year because of the heavy freezing at night. Does the time frame match my symptoms? Could it be relatively dormant for a year and some months before showing signs??? IE like if I was exposed 2 years ago?

Wow, ok, I hope that is a comprehensive  list of info, lol

[JackieCalifornia]

I just searched online for 'michigan lyme disease association' and there is indeed one by that name.  There may be other similar groups, and these would be my first stop in finding a Lyme doc near you.  Often Lyme docs keep a low profile to avoid getting hassled by medical boards who don't 'believe' in Lyme disease, but they are out there.

You could have been infected a couple of years ago, or last week.  You never really know unless you see the tick on you ... but the things are so tiny that many of us never see them.  We're not talking the size of dog ticks:  they are instead like the period at the end of a sentence.  And they can latch on at your scalp etc. and not be seen.  I'm not outdoorsy, and I never had a rash or saw a tick, but I for certain had Lyme and babesiosis.  

You don't need to prove you had a tick on you ... the tests will determine what you have or not.  Go for it!  

[Katya4]

Does what problems I have sound like Lyme?

Ok I will check their site.

[JackieCalifornia]

"Does what problems I have sound like Lyme?"

Lyme shows up differently in everyone ... I think it is partly due to personal body chemistry and how strong your immune system is, and also due especially to what other diseases the 'Lyme' ticks brought with them.  The symptoms are stirred around in the body and make it hard to know what is in the mix, even for the docs.  

My rule of thumb (having had Lyme) is to keep an open mind and get tested if the other most likely possibilities don't seem to fit the symptoms.  

[Katya4]

I fit the symptoms of other things, but due to my perfect MRI's, I don't know what would be most likely...

I think I'm going to try and get tested. It couldn't hurt, at this point I just want an explanation, and hopefully a solution.

Thanks for your responses!

[JackieCalifornia]

The tests usually given first are called ELISA and Western blot.  If they come back positive (indicating that you have Lyme), then the tests are reliable.  If the tests come back negative (indicating that you do NOT have Lyme), the tests may be wrong.

If your tests both come back negative, then there is another test offered by IGeneX Labs called the PCR test (polymerase chain reaction), which will not give the 'false negative' that ELISA and Western blot tests can give.  The PCR test is more expensive than the others, but it is more accurate.  If you cannot afford the tests, there are some Lyme charities that may be able to help with the costs.

Best wishes to you -- let us know how you do, okay?  

[Katya4]

Ok, I'll check it out. I'm going to call in the morning.

[mojogal]

Ditto what Jackie said. I have had the same symptoms as you at one time. I still can't tolerate heat.
I have been sick a long time and the longer you wait the sicker you will get.
It might be good to get the igenex tests first but you would need a Lyme literate Dr (LLMD) to sign off on it. It's a pain that regular tests are so
inaccurate.

There are groups in Michigan. I wish you luck and let us know how it goes.

[Katya4]

I searched for the Lyme tests, which range from 200$ to 1500$, but I can maybe get it covered if a doc writes why it is necessary. I also received hard data today from testing of my arm strength over last several months, I have lost 20% of strength in my right arm, which was the stronger one.  

Hopefully this new data will help me make a case to my insurance for necessity of testing.

I will see my GP next week.

[JackieCalifornia]

There are also some Lyme charities that can provide funds for testing, I have read.

One is called the Lyme Light Foundation and the other is LymeTAP.  I don't know anyone who has used them, so don't have any feedback for you, but it's something to think about if needed.

Take care, and keep us posted!

[Katya4]

Thanks! If I have no luck with my doc I'll check them out and see. Lyme really does seem like a possibility, given what i've been able to read about it.

[JackieCalifornia]

Good for you! -- you are doing what I would do, following through on getting tested and figuring out how to deal with the docs.  Keep us posted!  

[JackieCalifornia]

Here is one possible lead for you:
------------------------------------------------------------
The Michigan Lyme Disease Association
     www.mlda.org/

The Michigan Lyme Disease Association, Inc. (MLDA) is a statewide, all-volunteer, non-profit, 501c3 organization founded in 1989.
-------------------------------------------------------------
Groups like this are often quite good sources of information on how to find a wise Lyme specialist near you.

Let us know how we can help --

[Katya4]

I got my GP to order me the lyme test (the first basic one) and she said if it comes back negative she will also order the Igenex test, she said it will be her first time to use that test, so I gave her my insurance's instructions that she only has to write that in her medical opinion it is necessary and then it will be covered. She said no problem!

I got my first blood draw at the hospital right after my office visit. She also is referring me to a different neuro (in case its not lyme).

Such a strange feeling, I don't know if I should hope for a positive result, or not... Nobody wants Lyme, but Lyme would be the simplest and most curable solution for me from the sounds of everything. Such confusion on what to think...

I got the test.. cool. One step closer to an answer.

[Katya4]

It has to be an LLMD ?? For sure? My insurance didn't say that, but I have not looked up IgeneX's rules yet.

If I need an LLMD I'm sure she would refer me to one and write any necessary documents to get it covered by my insurance if at all possible.

[JackieCalifornia]

No, the doc doesn't have to be an LLMD ... partly because there is no official title or degree that states 'Lyme-Literate Medical Doctor.'  It's a slang term those of us dealing with Lyme used to differentiate between the docs who are clueless about Lyme and the docs who understand Lyme disease, take it seriously, and know how to approach treatment effectively.

If you ask an MD, "Are you an LLMD?", s/he would likely give a little smile and say "No, I'm a medical doctor -- an MD -- but I have a particular interest in Lyme disease."  There are areas of practice in the medical world which do have established titles other than MD for some practitioners, such as Naturopathic MDs, and some others, but there are limits on their practice area.  

We talk here on this site about going to see an LLMD for diagnosis and treatment not because it is a title or an advanced degree (it's not), but because it tags the MDs as having a more advanced *understanding* of Lyme and its coinfections and how to diagnose and treat them.  

So if your doc is an MD, meaning s/he completed a required course of learning in medicine and has passed the standardized tests of at least one state's medical board, then the doc is licensed to practice medicine.  

My LLMD was (still is) an MD, and that is how he is written and spoken of:  Dr [John Smith], MD.  And if you ask an MD, "Are you an LLMD?", the doc would almost certainly say no, but then explain a bit.  

So when it comes to your insurance, all the insurance company would care about is that your doc is a Medical Doctor (MD) licensed to practice medicine in the state where s/he is practicing medicine.  (One quirk to this rule of thumb is that in some states, naturopathic MDs have a special license different from an MD, but I don't know any more than that about it.)

I personally would be inclined to have an MD as my treating physician, just on general principles and to be sure all the bases are covered, but others may decide differently.  

Does that help?  If not, let me know, and I'll try again!

[Katya4]

Hahaha! That explains why I couldn't find the specific LLMD anywhere online that was 'official' cause its not.

Yes it makes perfect sense!

[Katya4]

I got my first test results back. Negative. I have to wait quite a while before we can get Igenex test. The hospital did not include the numbers, only Negative result.

[JackieCalifornia]

It seems odd to me that the tests are allowed only one of two answers:  yes, or no.  Mama Nature just didn't sign on for that.  So I hear you.

I think you can request the FULL test report from the lab/hospital, because they belong to you!  Give it a try, or ask a friend to make the calls if you're not up to it.  

Is there a problem with doing the IGeneX tests?  If it's cash that is needed, then tap friends and family and the LymeTAP and Lymelight Foundation. The sooner you get the bugz sorted out, the better, for all kinds of reasons.  The longer Lyme is in place, the more nooks and crannies they find to hide, and that makes them harder to wipe out at treatment.  Not that it can't be done, but golly!  

Let us know how we can help, okay?  If it's paying for the tests, let us know ... there are a fair number of people around who have been through what you are ... so I'd press on.  But only you know the goods and bads  that feel they way the do to you.  So don't freak:  just go over the situation every couple and days and read up if you can, and then chap with friends and family.  It really can make a different that family is around, even the family that I could swear I could not remember.  Willful Blindness, eh.

Bottom line:  don't be a hero:  help the docs get you well as best you can.  Keep us posted!

[Katya4]

Its because I have to get another appointment scheduled to do it and that is a bit over a month away :/ (Major shortage of physicians in Michigan)

I'm going to call the hospital and ask them to mail it, I do that with all my tests now, makes it far easier when a doc asks to see them, I just bring to appointment.

I suppose I can google for some other doctors and try and see if they can be any faster at it.
Can I get the test done at the hospital without a doctor but use the pay out of pocket and the Lyme association funds? As a college student I don't really have spare cash anywhere lol.

What seems like the best idea from what you know about LLMD's?

MLDA did not call me back, or send the packet in the mail, A real person did not answer the phone both times.

[mojogal]

You can apply for assistance getting your tests done with Lyme tap. If you go to the web site whatislyme? There are tons of good hints on everything Lyme. It run by a friend of mine. It's great!

[JackieCalifornia]

I hear you.  It's not like being ill is bad enough -- all these hoops to jump through make it a thousand times worse.

Does your college have a clinic for students?  It may be included in your tuition, and the cost could be quite small.  While the cinic might not want to get tangled up in the 'Lyme wars', they may be able to at least order the test, which would move things ahead for you.  Same is true for nonLyme docs, who may be willing to order the tests but not willing to prescribe, due to the confusion in the medical community.

It can be hard to find a Lyme-knowledgeable MD for several reasons, one of them being that the docs often don't want a lot of publicity that they take an openminded approach to dealing with Lyme, which could get them in trouble with the local/state medical boards who think Lyme is not a big deal.

I don't know who runs MLDA, but it could be volunteers who are not always there, so keep trying to see if you can get through.

So what is the best way to work through all these barriers?  Do what you are doing, and keep trying different possibilities and approaches to getting in to see a knowledgeable doc.  Ask family/friends to help with the phone calling.

I remember well how lousy I felt, and it makes everything harder.  But you are doing everything I can think of ... hmmmm, just had a thought:  did you try your school's medical clinic?  There may be a sympathetic MD there who could order the tests.  Docs who understand Lyme to be the hassle that it is sometimes stay very quiet about their own views of the situation, to avoid alienating their colleagues, so being discreet about inquiries may help.

I'm sorry this is such a problem -- but don't give up!  You've come this far, and you will be glad you kept going.  Keep us posted, okay?

There is no single right or wrong way to get all this done ... each person and their medical insurance (whether through school, employer, or self-paid) is different.  

You could contact those two organizations mentioned above and ask their advice on how to maneuver through the medical system to get the tests done ...

[Katya4]

I could try the school clinic, I have never been to it, I believe it is free, but I do not know what they can do as far as testing. I could do that tomorrow after my art class.

I'll keep a note of those funding sites, I may need them.

It seems physical fatigue is common for me, my body tires easily, and even after my brain is rested, my body is still tired. Like a feeling of being dipped in cement. It makes my Gym practice a real drag some days, and I always go home weak, like can hardly climb the stairs weak. Which baffles me, too weak to be general expected exercise fatigue, this feels different.

My mind however, seems to be fully awake, though I have some incidence of brain fog at times, and weird issues with saying or writing the wrong word, or misspelling them like a first grader. I can't always recall a word, and people tell me I say words out of order on occasion.

Oh dear,....maybe my mind is worse than I think it is, now that I write things down. Drab. Maybe its unrelated dyslexia. Intellectually I am fine, I still have 4.0 average in college.