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..

[lyme_maybe]

Hi Katya4,

I can relate to you for sure. I am in WI and am waiting for my LLMD appt which is in Sept. I have to tell you I'm so glad I found this site. One of the suggestions that was given to me was to take a Magnesium Supplement. I started this yesterday and holy cow, what a difference already! My brain is clearer and my mood has improved x 10 in a day! Seriously! I took 1200 mg yesterday 400 x3 times throughout the day. I also do acupuncture and have an appt weekly which also helps me. Just thought I would share those tips to help get you through to your appt. I know the waiting is so hard when you feel like crap.

On a side note, I have also cut out dairy and sugar from my diet, along with white bread, white rice and also alcohol. Those foods affect me too much and its not worth it to eat those things. It's hard, I'm not gonna lie, but when having a cheeseburger makes you not be able to walk the day after, yeah, I can do without.

Have you checked for any LLMD in WI? There were 3 in my area but I live in southcentral part of the state. Only 2 months wait, not 6. I got my referrals through ILADs.

See my other posts if you are interested in my story and symptoms.

Hang in there. (((((((( HUGS )))))))

[JackieCalifornia]

Good for you for pressing ahead -- the sooner diagnosis is made and treatment is done, the better.  Lyme can hide in the body and be harder to get rid of.  Even if you have to drive a ways to see a Lyme specialist, I would do it.  Ask a friend to take you.

[Katya4]

Well, looks like I was lucky to get the appointment I did. Most aren't accepting new patients, only 3 take insurance, and 1 happened to take my insurance and be available. Michigan does have scarcely few LLMD's

So waiting till December I guess... I keep looking.

I got in touch with an advocate in the area who sent me more names, and instructions on ordering the test kit for Igenex.


Hoe-hum... I wish I would just wake up one day and feel normal...but it seems like I instead wake up to yet another bizarre symptom...Argh!
  

Thanks for the encouraging words Jackie! I keep up doing school work and my hobbies.

[JackieCalifornia]

and PS:  I think you are doing very well coping with all this, esp. since Michigan seems to have too few Lyme docs, esp. this time of year (when the Lyme ticks are out looking for people to bite).

Because of the controversy over Lyme, there may be Lyme docs it takes some effort to locate near you ... because the docs can be afraid of being too well known in the public eye, and thus catching the eye of the state medical board, and NOT in a good way.

Hang on, keep going, and let us know how we can help.  I admire your grit, and that strength will do you well in getting rid of Mr Lyme.  Go for it!

[JackieCalifornia]

Given the serious split in the medical community about whether Lyme is serious or not, the reaction of non-Lyme-docs can be simple denial or (at best) a few weeks of doxycycine antibiotics, which work against Lyme IF

   (1) you start taking it almost immediately after being bitten (tho many of us do not know when or where we were bitten -- count me in that group) and

   (2) there are no other infections that the "Lyme" tick carried and that do not respond to the same meds that Lyme does.  Actually, about half the 'Lyme' ticks carry other infections that need separate testing and often different meds than Lyme needs.

Those responses were formulated several decades ago when Lyme was first discovered, and docs are still taught that that is all that is needed.

Time and Lyme march on, however, and with the spread of Lyme and more research that has been done, the older 'rare, hard to get, and easy to cure' approach has been discredited.  

In your situation, I would try to find another Lyme doc asap -- the longer you wait, the harder it can be to get rid of.  I had Lyme for at least six months before I was diagnosed, and I was a mess:  couldn't think straight, couldn't do much at work, couldn't do much for my family.  Bleh.

So hang on, forge ahead, and keep us posted!

[Katya4]

I had negative MRI of the brain, so I think that rules out MS. Though my former PT seems ever concerned that I have the beginnings of MS. Many of my symptoms do fit, yet, somehow I doubt it. "Mystery Disorder" like lyme however seems right up my ally, given I tend to draw the weird card all the time medically. Like my allergy to benedryl, and Zofran that induces vomiting, Haha!

Really? Seems to me you should try different antibiotics??

What are your concerns with Igenex?


I got a call back from a Lyme doc today!!! Yay!! However he is not available till December. So I will try any others I find to see how soon I may get in.
I wonder, do natural remedies help with Lyme? Some people say so, but I am skeptical of such things...

[JackieCalifornia]

I was reading through the whole thread up above to refresh my memory, and for the first time saw your post -- how very kind of you!  It's a good group, and it pulled me through misery when I was ill.  Thank you again -- we look forward to any thoughts and experiences of your own that you might be willing to share, but not required.  :)  Thanks again --

[JackieCalifornia]

Would be interested in your specific concerns about IGeneX --

[Borrelian]

Sorry to hear you are experiencing the usual difficulty in getting diagnosed and treated for possible Lyme - an illness as serious as any other major illness (it can be lethal).  For what little it is worth, I will add my input in response to your initial post about your concerns that your symptoms might be due to Lyme disease.

You said that you experience bad symptoms in certain parts of your body for "three weeks or so at a time in different parts of my body".  While fatigue, as well as pain for some Lymies, seem ever-present in Lyme, usually other symptoms - such as numbness or visual blurring - are of shorter duration than 3 weeks in Lyme.  Our symptoms can be identical to those of MS - but the MS symptoms persist longer than ours do.  It would be normal in MS to have specific symptoms (that come and go) lasting for 3 weeks - but it is my understanding that this would be unusual in Lyme (except for fatigue and pain).  So numbness lasting 3 weeks would be more suggestive of MS than of Lyme.

One thing that could be tried - since Lyme diagnosis is so elusive - is to just go ahead and treat for Lyme with Lyme-appropriate antibiotics and see what happens.  If your symptoms improve on antibiotics, then you will know you are dealing with infection - likely Lyme.  I remember when I took my first strong dose of Lyme antibiotic:  I thought I was "home free" - since all of the sudden I was energized - with no fatigue, and no weakness, and was feeling normal again.  I thought it was an "easy cure."  Alas, the bugs figured things out and my symptoms came back - never fully going away - yet I was far better than I had been.  

Regarding Lyme lab tests (even those from IGenix):  A negative result does not mean you do not have Lyme:  It essentially only means you had a lab test done.   You could still have Lyme.  Keep that in mind.  I have been disappointed greatly in Igenix - which is not the lab it once was.

[Katya4]

Oh, and his name and Lyme practice are available under google. It states so on his site. No idea what that means if the others are all so squirreled away, maybe he only treats by CDC standards... Guess I'll find out when I call.

Wish me luck!

[Katya4]

Right right right. I understand. I was able to dig up 2 more, left messages they haven't called back. The first one was only POP so I may need to go to Lyme Tap if the other two are the same. I'm going to call back one of them right now because I think they were on lunch when I called earlier.

The doc I found who'd name was posted isn't in the listings, but he is in practice for lyme. I'll call him too.

[JackieCalifornia]

While it may seem like the Lyme groups are few and far away in your state, remember that in many states, it can be risky for a Lyme doc to be identified as such.  The docs high up in the hierarchy in such states have the power to damage a Lyme doc's ability to practice medicine and even revoke the doc's license to practice medicine.  

(There are basically two kinds of states:  one where the law says the doc can practice in whatever fashion the doc sees fit, and if something goes wrong, it's between the doc and the patient and the patient's lawyer and a possible lawsuit for malpractice -- that's called 'freedom of conscience'.  The other kind of state is where the medical board decides how docs should diagnose and treat patients, and the medical board rules.

There may appear to be only one Lyme doc in your state, but I'm guessing without looking it up that your state is one of the places where the state medical board can haul the doc up on charges for treating Lyme patients aggressively and then take the doc's license away.  Docs in those states keep a VERY low profile, and we honor that by not posting their names here.  

It would not be doable for us to post here on this website two lists --  which states are 'freedom of conscience' and which states are not -- and then try to explain to each person who posts here which states are restrictive and which are not, so that we can protect the names of docs in stricter states while talking freely about docs in other states.  That's why we ask that NO doc's names be posted here in public.

So yes, there are Lyme groups in many many places, and there are MDs who treat in accordance with ILADS views in those places -- and just because you don't see the docs' names plastered all over this website does not mean there are no Lyme docs in your state.  If people go blabbing docs' names everywhere, soon there will be some states with NO Lyme docs, because we will have tattled on the docs, and the medical boards in the restrictive states will have used our roadmap to shut down the Lyme docs in their states.

[Katya4]

I just got an email from ILADS this evening, over a week from filling out the paper online. There is ONE Lyme doc in my state, so I will call in the morning. But I found one. Also a lyme group, but I think it is very very faraway.

I was really starting to worry , I'm glad I got a response.

[JackieCalifornia]

Another oops, I just now saw your post about looking for a doc -- so that's a good start you've already begun.  Local connections are valuable because it will find you potential docs you can get to without a lot of travel.  Some areas don't have a lot of Lyme docs, but things work out, so just keep trying.  

[JackieCalifornia]

Many of these Lyme groups are run by volunteers (mainly people like you and me) who have had Lyme and then stick around to help others.  This is end of school AND vacation season AND also Lyme season, so response time may lag.  

Just keep trying -- and be sure to include ILADS as source to find a Lyme doc.  ILADS has a staff, I believe, so do keep trying, and also see what you can find in your local area.  There are also state or regional groups that are not part of ILADS, and they can be found just by searching around on the internet.

Your short bio that shows when I hover the mouse over your screen name does not indicate what part of the country you are in, and if you are willing, then consider posting a new thread here (not buried in a long thread like this one) that is titled something like 'Need LLMD near Lexington KY' or whatever describes your general location.

There is no super-sized organization (whether private or government) that 'runs' the whole Lyme empire, so it takes a little digging.  Once you find some connections, it will start to fall together.

[Katya4]

I filled out the Referral request already, have not received anything yet.

Did not get reply from the local lyme group either, nor a call back from any place. :(



Am I doing something wrong? I'm not getting any replys or stuff in the mail, maybe it takes a few weeks? Or maybe there is nothing in my area at all!?! ?

[JackieCalifornia]

Welcome to the wild, wacky world of Lyme.  Sigh.  

(It's almost 3am here and I'm tired, so I'm sorry if what follows is a little fragmented.)

A few approaches you might try (these may repeat things above, it's 3 am and no time to re-read above):

-- Contact ILADS, the main voluntary group for MDs who have a more progressive view of Lyme.  ILADS is short for International Lyme and Associated Diseases Society.  If you go to their website, it will tell you how to request member docs' contact information near you.

-- Post a NEW message on this site, titled something like

                         'Need LLMD near [Buffalo NY]'

or whatever area you are in.  That will catch the eye of someone who isn't reading all the posts all the time.  Also search on this site for geographic labels like the name of cities you could drive to.  Once diagnosed, follow up appointments are often only once a month, so it's worth the drive for the right doc.

Also, just search this site for a city name like [Buffalo NY or wherever you are] and see if anything old comes up.  Won't take long, and sometimes people who have cycled through here just happen to have lived near where you are or can get to.

-- Dig around online to find any Lyme patient groups in your area.  They sometimes keep a low profile, but can be found.

-- Do an online search for key words such as
                         ----   LLMD Lyme Buffalo NY  ----
or whatever area you are in or near.  It may turn up groups you haven't heard about.

Go for it!  Good for you for continuing to take care of your dear one.  Let us know how it goes, okay?

[Katya4]

Oooops!!!! Sorry!!! I didn't know that, given I found it on another site in someone else's post!! Ha! Also I found him under google, so maybe he isn't concerned?

But sure explains why it is so hard to find them! Holy cow!

Do you have any tips on that?

[JackieCalifornia]

I hear you.  More about that below, but first thing is:  

===>>> Please do not put names of Lyme docs etc. in your posts.

In too many places around the country, the state and local medical boards attempt (and too often succeed) in shutting down MDs who treat Lyme aggressively.  The result of that is, unfortunately, that there are far fewer Lyme-oriented MDs for us to consult with.  These docs do not want to lose their licenses to practice medicine, and we need them all up and fighting Lyme for the rest of us.

I know, it sounds bizarre, but that's just where we happen to be in LymeWorld for now.  Otherwise, all good wishes to you, and let us know how you are doing with whatever doc you end up with.  

Just no names please.  :)

[Katya4]

I am having a hard time finding physician names even. I did find one in MI, Arnold Markowitz (sp?) I will call his office in the morning. The MLDA never called me back. This guy is almost 800 miles from me, but oh well, its all I got. Wish me luck!

[JackieCalifornia]

Good for the doc!  Not too many MDs seem willing to say that they do not know enough about Lyme to diagnose and treat it properly.  It's also possible the doc did not want to get in a disagreement with other MDs nearby or in her practice group, but in either event, her honesty is refreshing and allows you to find a knowledgeable and appropriate MD sooner.

Be cautious about MDs who think they understand Lyme, but really do not.  How to know if a doc is the real thing?  Membership in ILADS (International Lyme and Associated Diseases Society) is a good (but not perfect) sign that a doc is knowledgeable about Lyme and how to treat it, and MLDA may perform the same function.

If you are too worn out to do the calling etc., ask a friend or relative to help you with it.  I well remember how huge the task seemed sometimes -- but things will get better.  Hang on, stay in touch, and let us know how we can help.  

[Katya4]

My doc called back today, she does not think she knows enough to be able to get me the lyme test, much less treat it in the case of a chronic infection, she recommended trying to find a specialist, since I would need one anyway.

I filled out more online forms to get info on specialists. I just found a lyme advocate listed in my area on the MLDA site, so I'll email her as well.

[JackieCalifornia]

Sorry you're feeling lousy -- but it's part of Lyme.  Your body is fighting hard against the infection, so I wouldn't push it too hard.  If you are used to long runs, then go for short walks and see how it goes.  Then when you find a Lyme doc, talk about your exercise program.  But above all, be kind to your body.

[Katya4]

I finally got tired of waiting for my GP so I called a bunch of lyme places today looking for an LLMD

The physical fatigue is hanging around, I'm starting to regret taking a week of from the gym, I feel like it just made the physical fatigue worse by caving in to it, now its twice as hard to push my self to do even just a few pullups and pushups for just normal 'stay healthy' daily excersize. Its like I burn out so fast, 15 min of moderate excersize and my whole body feels like I just ran a marathon. Even if I am mentally motivated, my body doesn't hold out. (I can't remember how to spell excersize atm, sorry)

I just want to set and not move all day...which is way out of character for me considering I HATE to be static like that. I am/was very active, and I never had to push my self like I do now.

Actually I am finding it hard to 'act alive' even over the phone, Its just too much effort. Its like everything is just blehhh... It's not like I am sad or depressed, just extremely tired.

It's been cool lately, so in that respect the tingling and such is far reduced. Its only in the 50s, that has been a great relief. I just wish I wasn't exhausted so I could go enjoy the (nice for me) weather.


Sorry for the rant, it just upsets me that I feel like crap. I have college work to do, and I don't even feel like opening the book, ticks me off. I'm a 4.0 student, and I can't let my grades fall because I'm tired, so I must do it anyway...grrr... makes me want to throw things.


I got in touch with a friend who's cousin had Lyme, and nearly died before her Dx, she is now well. She is from Michigan like me, so I hope she will know a doc in my state. I have my fingers crossed I will get a hit from some place this week.
I also read Avrial Lavange (sp?) had lyme. Saw on CNN this week.