lyme, or no?

ok, so for me it all started in one day. 2-3 weeks after the flu and mono, i woke up, had a hard time turning my head to the right, little spasms in my neck that would pull my neck to the left. what i thought was weakness in my arms and legs, but now im not sure, its so hard to explain..when i lift my arms and legs they shake, but i can still all the things i need to. its like the muscles cant relax or something. twitches EVERYWHERE. i have been so worried about ALS. but from what i have read, it doesnt start this way.

  i have seen a neuro, who said cervical dystonia with tremors, but im so not buying it. that doesnt start this way either, at all. and all literature says that if you present with other neuro symptoms that the cervcal dysonia is almost alwys secondary.
i also have these wierd feelings of burning under my skin, so stranfe. my joints sometimes feel so irritated, like a cold but warm burning, and if i stretch my legs out, then straighten them, its so painfull..

the tests i have had that camr back out of range where as follow :
low b12
low ferritin
low vitamin d
hypothyroid
low creatinine

i have been treated for over 7 months for all things listed above, without ANY improvement, at all.. im so frustrated. im only 30, i have 3 small kids (who are my whole world)..i really need to get back to who i was before all of this. any help is so very appreciated. i guess my main question is, does this sound like lyme disease?? has anyone had these type of symptoms that started so fast?

[ree427]

I can't understand why you would get in trouble for suggesting Lyme and trying to help people. Makes no sense why people would not want the information.

[brandycolwell]

wishing that i would have proof read..lol

[ree427]

My symptoms also began with flu-like symptoms and neck spasms which would pull my neck to one side. I also have the low B12, low ferritin, low vitamin D and hypothyroid. To my knowledge, all of these are commonly low with Lyme and/or co-infections.  I am not sure about creatinine. I also had the muscle twitches everywhere. So far I know for sure I have the co-infections of Bartonella, Mycoplasma, and Ehrlichia. All my Lyme tests have been negative, but I am not convinced I don't have Lyme in addition to the co-infections.
Lyme would be definately worth investigating in your case. Seeing a Lyme-Literate MD (LLMD) is your best bet. A LLMD knows how to give a thorough evaluation when it comes to Lyme and co-infections and knows the ins and outs of treatment.

[JackieCalifornia]

Sorry to hear you're having such a rough time.  Good for you for keeping an open and critical mind about what you are hearing from your docs.

To find an LLMD as Ree says, try searching/googling

LLMD louisville KY

or go to www [dot] lymenet [dot] org, which has links to local Lyme patient groups, and they can often give you hints on local docs who are wise.  LLMD is not, by the way, an official title ... we Lyme patients just use it to tag a doc who understands Lyme and knows how to deal with it, unlike most docs.

I just went to lymenet and there were three links for various parts of KY.  

There are also other websites with similar functions.  If you need help, let us know.

I would do exactly what you are doing.  Take care!  Stay in touch.

[brandycolwell]

thank you so much for all you said. given that your symptoms started like mine, i have hope. im pushing forward and making them test me, im paying for it, so why the heck not!

[brandycolwell]

ree- did you have twitches, and shaking in arms and legs??

[JackieCalifornia]

Twitching and muscle tingling and cramps seem to be pretty common among those diagnosed with Lyme.  I found that take daily magnesium supplements helped, because the bacteria use up magnesium in their reproductive process -- !

At one point, I got such a bad cramp in my calf in the middle of the night, I leaped out of bed while I was still asleep, and woke up trying to get my toe AND heel down onto the floor -- my calf muscle was cramping so tight, it was like I was wearing really high heels and couldn't get my heel down on the floor.  And it hurt!!!!

I read that any formulation of magnesium that ends in "-ate" is easiest to absorb.  I have taken different kinds, and some seem to match me better than others.  My favorite is one that includes three kinds of magnesium:  citrate, aspartate and orotate.  I have also taken magnesium malate.

I had a doctor warn me that too much magnesium can damage your kidneys, but another doc scoffed at that and said I would get pretty bad diarrhea before I got kidney damage.

I think others here have tried magnesium supplements too, so you might look around online here and elsewhere and see what people do to make it stop.

[ree427]

I have twitcheseverywhere and my legs use to shake although they haven't for a long time. I take magnesium for the muscle twitches.

[ewford]

brandycolwell,

  Im glad you decided to come here and get some good advice.  I think I PM'ed you or told you to come here.  You will finally get some answers here.  Another poster on that ALS site reported me and I got a warning  e mail from MEDHELP because I suggested you had Lymes.  I hope you get some info to help you beat this, and I hope you were not upset I pushed you here.

[ewford]

Bigsissie on the ALS page reported me.  Her symptoms are just like yours and I PM'ed her after reading her profile.  She berated me for helping (or trying) you and suggesting she might have a bacterial infection (s) instead of 8 different AI diseases.  Horse-Water-No Drink...

[ree427]

I can't understand why you would get in trouble for suggesting Lyme and trying to help people. Makes no sense why people would not want the information.

[ewford]

go to your inbox

[brandycolwell]

WOW!!!!!!!!!!!!

no good dead goes unpunished!

im so very thankful u suggested i come here, i feel some stress off of my shoulders that it may not be something as bad as ALS!! i have spoke to a LLMD who sayd ALL my symptoms sound like Lyme! im sorry she did that. one thing they said to me that makes perfect sense is this- you are so young, it would almost be obvious that it would have to be an infection causing all these symptoms, that all came on so suddenly. as far as i have read, ALS, does not present this way. so anyway, THANK YOU SO MUCH!

[mojogal]

Brandy, It can affect any part of the body. I remember having so much weakness in my arms that I couldn't open the door to the washer or dryer. Now having numb hands coming and going. I had mono too. Don't know if that is just bad luck or what but you should be fine with an LLMD. Good luck!

[brandycolwell]

  thank you ;) i hate that you also had/have the same problems, but it is good to finally hear someone say, yeah, i know what you are taking about!

[ewford]

  Brandy, check for a new post by me.  I just got my labs back that Dr Jemsek had me get.

[brandycolwell]

  i will be watching :)

[brandycolwell]

so i went to the endo today, and he is checking vitamin D (as it was so low) and thyroid function again..also looking into why my calcium is so high. he also made me aware how dangerous it is that my blood sugar stays so low (70 after eating) so, onto other things i guess. can i ask my endo to test me for Lyme disease??

[ewford]

He will probably use the labcorp/Quest ELISA and or Western Blot which looks for antibodies.  Two things are going on here.  Your immune system is so overwhelmed that it will not produce a noticeable response.  Plus, from what th researchers have found, the Borrelia produces a surface coating that "absorbs' and attaches any antibodies to it like a sticky coating, hence very few free floating antibodies.  You need to look for the actual DNA of the bacteria.  Thats why IGENEX Labs is so profecient, it uses an IFA  (Immuno florescent Assay)) test which is MUCH more effective at finding the bacteria.  Also get checked for HHV6 which is a coinfection or a latent virus that is now "un-suppressed".  My HHV6 was 14.7 as a IgG, so it was recent.

  I suspect he will only order the Labcorp tests since he dosent know any better.

[JackieCalifornia]

It can't hurt to ask your endo to test for Lyme, but because Lyme is a developing area of medicine, MDs who do not specialize in Lyme often don't know which tests are most accurate, and will order tests that are maybe helpful, but that have serious limitations.

Actually, none of the tests is very accurate, which is why seeing an MD who specializes in Lyme is important, because the patient's history and symptoms are very important factors that many docs, accustomed to relying only on the paper test results, will not take fully into account.  

If your endocrinologist tests you, get copies of the test results and think about taking them to a Lyme specialist.  When I was ill with Lyme and a co-infection, I had been through about 20 docs, and it was my second or third endocrinologist who finally ran a Lyme test, which came back mildly positive.  This doc, who was very nice and thoughtful but totally clueless, said that I could not possibly have Lyme because I wasn't sick enough. Riiiiight.

Actually, the longer you have had Lyme, the less active your immune system may be against it, and so the less likely the tests are to be positive.  Lyme specialists know this, but regular docs don't tend to understand.

So can you ask your endo to test you for Lyme?  Yes, of course, but s/he may not know how to read it.  Get the test, get a copy, see what then endo says, and then decide whether to find a Lyme specialist to review your history and the test you got.

No one on a website can diagnose you or tell you which tests you have to get.  A doc wouldn't do that online, and any medical-type advice posted here should be viewed with caution.  No one here is medically trained, so all we have are our experiences and what we have read.  Flat statements about what tests you must have done and what your doc knows or doesn't know are imo over the line, so be cautious.  This is ONLY a website.

Best wishes to you --

[brandycolwell]

thanks guys, of course, i do not rely on anyone here to treat or diagnose me..but, hearing ppls stories, and suggestions are always helpful.

[ewford]

  the reasons I mention testing for myco and HHV6 and cytomegalo virus is because SO LITTLE is known by standard doctors.  But prof Dr Garth Nicolson says in his experiences people with chronic illnesses have these infections/latent viruses (now active) and they are overlooked (sometimes even by somewhat experienced LLMD's.)  Yes, we are NOT doctors, but we can make suggestions from experience.

Jackie, so you are saying that the tests that Jemsek ran on me are not suggestable?  And he is an expert ID and Lymes doc.  You are not.  I am not either.  But I was told by 2 EXPERTS what tests should be run and how they are interpreted.  Some by Labcorp, others by IGENEX.  The labs that I got are THE most up to date labs being used.  

  BUT, it is up to the patient to be informed and be up to par with the tests being used to help determine a particular illness.  I don't know who your doc was, but I'll stake their reputation and knowlege up against any LLMD, anytime, anyday.

[JackieCalifornia]

Yes, I agree that it is up to the patient to be informed.  My concern is that when flat statements are made, such as:  "Your immune system is so overwhelmed that it will not produce a noticeable response."   Will not?  Absolutely?  Really?  I would soften that to say 'may not'.  But it's not because the immune system is overwhelmed; it is, acc. to what I read, because the immune system stops producing antibodies after a period of time, being designed as it is to deal with bacteria with short half-lives, and Lyme are not in that category.  

It's the absolute nature of the verbs that concerns me, telling people what tests to get, not just suggesting them: "Also get checked for HHV6 which is a coinfection or a latent virus that is now "un-suppressed".  Maybe we should leave that up to the doc to decide.  

And to predict what an MD whose name is not even known to us will do is imo a bridge too far:  "I suspect he will only order the Labcorp tests since he doesn't know any better."  Doesn't know any better?  You 'suspect'?  Neither of us knows who this guy is or what he knows, and if my doc were being trashed that way, it would certainly induce fear in me, even if I knew that the person doing the trashing didn't know who my doc was.  Anxiety and fear are part of Lyme, as you know, and anything unnecessarily making it worse seems ... unnecessary and even cruel.  That's what I worry about:  the effect of these over-the-top statements on the ill and frightened people who come here.

You are of course entitled to your point of view.  I just ask that you consider the effect your words have on fragile people who come here.  You can suggest anything you like, but *suggesting* is not the same as flatly stating, for example, that a doc whose name you don't know and have never met "doesn't know any better."  The people who need to get smacked around are the IDSA, not the poor lost and ailing souls who fetch up here looking for help.

You also say:  "I was told by 2 EXPERTS what tests should be run and how they are interpreted.  Some by Labcorp, others by IGENEX.  The labs that I got are THE most up to date labs being used."  Well, that's certainly your opinion, and I don't disagree with it, but it's not up to us here to tell people what's right and wrong.  Our docs, yours and mine, may be wrong.  There is no franchise on the absolute truth and cure for Lyme, or none of us would be here because everyone would be cured already.  Your expert is another guy's idiot, and vice versa.  Absolutism is what the IDSA traffics in; we should strive to be humble enough not to follow them down that path to perdition.  

We are here to help people find their way to a doc who can diagnose and treat them and to understand the mess that the medical community has created with regard to Lyme -- not to tell visitors here what tests to get and what diseases they have.  

And, as if it matters, my LLMD is an even better known authority than Jemsek.

[brandycolwell]

   hey :) so i wanted to add my new symptoms- its like a cold burning feeling in my right knee, annoying. also, then, its like really cold water running down my leg..soooo strange.

[ewford]

  I see where you are coming from, absolutes.  Did your doc test you for HHV6, Mycoplasmas.  Just wondering.  When Nicholson states these are more often than not coinfections along with Cytomegalovirus and others.  Your "even better known authority than Jemsek" dosen't study those and know the ins and outs of the bacteria on a cellular level.  
  If your doctor testified in front of congress, and wrote infectious disease guidelines then I guess we are even on that point.  My point to you is that finding a LLMD does not guarantee a "winner".  kinda like saying all toothpastes are the same.  They are not.  Suggesting what tests to run or at least being informed about what should not be overlooked is the point here.
  I read originally that "Lyme was hard to get, but easy to cure".  I though "No problem!"

  Had I been informed, I would have been better off.  Nicolson suggests these from research.  Therefore i am going to suggest looking into them.

[ewford]

  I will usually get a icy hot/cold sensation on the fronts of my legs, knees down.  Like Jackie said, everyone is different.

[mojogal]

I loved it when my hematologist, (I now have genetic hemochromatosis ) said Lyme is a label you get when know one knows what is wrong with you and you don't want that label. Since I am moving soon I let it go but it shows you what the majority of MD's think. So sad..

[ree427]

To my knowledge, it sounds like you may be describing sensations from nerve irritation or damage. I get burning sensations especially in my feet. I also have nerve damage.

[brandycolwell]

yesterday seemed to be a better day, not great but better.. now, yesterday morning i took a potasium pill, not saying that what helped, just noting what i did. is it safe to take a potasium supplement everyday?

[JackieCalifornia]

there are probably max. limits on the bottle or you can find the daily max. online.  As long as it doesn't throw something else out of balance, hey, why not?  but keeping things in balance is important as well as dosage.  Sorry I don't know any more than that.