This all started with tingling in my hands with deep breaths

[Cassiehack]

I am posting this in various communities because I am uncertain of the nature of my issue. I am 22 years old and female. My only diagnosed problem is chronic idiopathic constipation, for which a cause was never found. That started 5 years ago, I manage with laxatives and suppositories under the direction of my doctor. anyways.....about a month ago I noticed that when I would breathe deeply I would get shock like pains in my hands and then tingling. This went away for about a week. When it came back I also started to experience tingling in my feet. Now I often have pain in my hands, and very sore calves without any real activity......and before now I was very active. I also get strange burning in my hands and calve muscles. Also this all started around the same time I was coming down with a virus. Dunno if they are related. I have had my thyroid checked....its getting checked again, and I don't have any deficiencies. I have to wait till December to see a neurologist. Also My arms and legs feel significantly weaker....and I sometimes feel like my spine is vibrating......yep. So anyone relate to this?

[JackieCalifornia]

You're very kind.  I think I overdo writing long posts, but LymeWorld is such a mess that I figure I better get it out there while someone is ready to hear it.  Some people wander for years, looking for a diagnosis and then for treatment -- it took me 20 docs to get diagnosed.  I'm no expert, but been around the block with Lyme myself, and as you are doing, I kept reading and asking questions.

I have read in various places that the Canadian docs are on a tight leash when it come to Lyme.  That's why I fear a move toward government-controlled medicine in the US -- he who pays the piper calls the tune, and when the govt is making decisions, there are three parties in the examining room:  the patient, the doc, and the government, which is calling the shots.  It makes sense that the party paying the bill has some say on what gets done, but 'government' and 'compassion' aren't words often found in the same sentence.  We have the same problem in the US, but more often due to restrictions on treatment established by the private insurance companies, which until now most Americans have had.  I am not looking forward to the day when 'Obamacare' issues its standards for diagnosis and treatment of Lyme:  a few weeks of doxy and a pat on the head.

I don't recall anyone from Canada posting here recently, but you might go up to the top of this page in the right corner, where it says 'search MedHelp'.  If you enter 'Lyme Canada' it will pop up with little bits of previous posts that mention both Canada and Lyme and give you some leads to broadminded Lyme docs up your way.    

About the family friend who came to the US for treatment -- you might talk with him/her about how diagnosis and treatment went in the US so you have an idea of where to start.  My Lyme doc had people flying in from various places to see him too, so it's done.  It would of course be better not to have to fly, but once diagnosed and established, you might not see the doc very often.  I'm a short drive away from my Lyme doc, and I saw him once a month after the initial appointment and follow up (to review test results done after the first appointment).

Lyme is a serious disease that won't go away by itself, and given that it is in the same bacterial family as syphilis, it can cause problems throughout life and possibly affect babies before birth to an infected mother.  Don't mean to scare you, but Lyme is a formidable foe.  Someday soon the docs will finally get it together and Lyme will become just a short annoyance instead of a long hassle, but we're not there yet.  Treatment is definitely worth doing right.

And if you have to borrow from family against future birthday and holiday gifts to fund your Lyme treatment, then do it.  It's worth every penny, and the sooner you start, the less entrenched the infection.  There are some charities that will fund testing and treatment for those without funds, but I don't know what their requirements are.  Lymelight Foundation and Lyme-TAP [short for Test Access Program] are the two I have read about, but don't know anyone who has gotten funding from them.

Take care and keep us posted!

[Cassiehack]

also, are you a writer or a professor? You are extremely well written in your posts.

[Cassiehack]

Wow, you certainly are very knowledgeable. My docs appointment got postponed for another week.....Ive been looking into Lyme treatment here....and its some political thing.....doctors often lose their licenses for treating Lyme, so I might have to go to the US to get to the bottom of whats up. I did check out CanLyme. My mom has a friend who had Lyme who HAD to go to the USA. I think I will try and rule other things out first because I am a student with no income at the moment, and I cannot afford to travel to the states.....never mind pay for health care there. I am currently looking into what I can do to help my body stay strong in the mean time. Even if I don't have Lyme I think I might have an autoimmune issue so I am just trying to hang in and use nutrition to support my body. Thank you so much for the in depth info you posted. :)

:) :) Cass

[Cassiehack]

Oh wow. That was an in depth response. I know its extremely difficult to treat Lyme. I was considering finding an alternative method to treat it without the specified antibiotics.....in a safe way that would not do me any harm if I didnt have it. However in Canada its hard because I can't really just go to any doctor....and I have to wait months to see a neuro....and we have inadequate testing for Lyme. So begins my journey! Thank you so much for all the info.

[JackieCalifornia]

                               -- this is part two -- see part one above --

I rattle along with all this because the first thing to grasp about Lyme disease and its cousins is that there is much confusion in the medical community, so finding a Lyme specialist (who thinks beyond a couple weeks of doxycycline in an established infection regardless of how long you have been ill) is the key thing in getting well.  

Unfortunately, neurologists and infectious disease docs are among the medical profession who often do not understand, diagnose or treat Lyme effectively -- and they are the docs who *should* understand!  And they do believe that they understand.

I personally saw 20 MDs of all kinds before one finally tested me for Lyme, and when the test came back positive, she gently informed me that I could not possibly have Lyme (never mind my positive Lyme test!) because I didn't "look sick enough."  An old friend of mine had had Lyme a long time ago, when it was very much an unknown disease, and when I got that positive Lyme test, I knew to take it seriously.  I found a Lyme specialist, was diagnosed Lyme and one co-infection, treated, and am still well today several years later.  

Part of the confusion about Lyme is that everyone's symptoms are a bit different from everyone else's.  Some of us have more muscle pain and twitching, some have nerve problems such as tingling and twitching and burning pain, others have digestive issues, some of us have 'brain fog' where we can't remember or think like we used to, and so on.  Add to that the co-infections, which have different symptoms from Lyme:  about half of Lyme patients have at least one co-infection.  (I had one.)

So ... what to do to determine whether you have Lyme?  I would find an MD who thinks bigger thoughts than many MDs out there ... personally I would skip the neurologist, but at your stage of exploration, it's perfectly reasonable to check in with him/her and see what the thinking is, esp. if it's on your insurance.  

But at the same time, I would find a Lyme doc and quietly make an appointment for a consultation.  Personally, I would not tell my other docs I was going to see an LLMD, because nonLLMDs often view LLMDs as quacks, and no point in alienating your other docs, whom you might need some other time.

You don't indicate on your bio sketch where you live, but if you want to post a new message on this site stating generally where you are ("Need LLMD near Nashville TN"), then someone here might have some suggestions for an LLMD and can send it to you through the private message system on this site (we can explain that route to you later).  There is no test to become an LLMD -- and gotta say, some of them are bit far out there in their approaches, so keep your antennae up.    

You can also email to

              -- contact  [at]   ILADS   [dot]   org --

and tell them where you are (like "near Nashville TN") and they can send you names of ILADS member docs nearby.  ILADS is the International Lyme and Associated Diseases Society, a voluntary group for docs who have a particular interest in diagnosing and treating Lyme disease.  It's no guarantee the doc ILADS sends you the name of will be a good fit for you, but it's someplace to start.  My Lyme doc is an ILADS member, and he is superb in my experience.

So ... the question is:  do you have Lyme and/or co-infection(s)?  I don't know -- but it's definitely worth finding out.  Lyme and its co-infections are treatable and curable, and it's worth the hassle to get rid of it!  The tingling and pains you are feeling could be Lyme, or might not be -- but a Lyme doc would have all the possibilities in mind -- and if you don't have Lyme, the Lyme doc would be the first to tell you.  

Also, you might want to search online for

      --- Lyme disease Bell's palsy of the gut --

and read some of what comes up.  I didn't have it, but I had a friend who did, and I remember how miserable it was for her.  She was finally diagnosed with ... Lyme.  What I have read about it sounds a good bit like your description.

The good news is that Lyme and the co-infections are treatable and curable, and while it can be a hassle, as you are already finding out, it is DEFINITELY dealing with it.  Lyme and its little friends just don't know when the party's over for them.

Let us know how you do and how we can help, okay?  We've all been where you are.  

(And PS, try taking magnesium supplements for your aches and pains.  Any variety ending in '-ate' [like magnesium malate, orotate, aspartate, citrate, etc.] is supposed to be most absorbable  by the body.  Lyme bacteria use up magnesium in the body, and that means muscle twitches and aches for many of us.  I had it, too, and the magnesium made it go away, and also helped me sleep better.  Be sure to tell your doc about any supplements like this that you are taking so s/he takes it into account.)

[JackieCalifornia]

This is part one of a two part message.  Part two follows below --
============================================

Welcome to the Lyme page --

I like your approach of checking out the possibilities in the various communities here -- we're glad to share with you what we've learned about Lyme & Co.

Lyme often is not diagnosed promptly or accurately, because it can imitate other infections, and to compound the problem, many (even maybe most) docs are taught that Lyme is rare, hard to get, and easy to cure.  Uh, not so fast.

Lyme is spreading throughout the country (and even the world), but too many of  the docs who diagnose and treat Lyme are still stuck on the earliest impressions of Lyme infections a couple of decades ago, when Lyme was new on the scene:  rare and uncommon.  Docs are still being taught that view, and because Lyme is confusing in its presentation of symptoms, it is hard for the docs to let go of their initial impressions.  

The ticks that carry Lyme disease are the size of a poppy seed, and very easy to miss.  I never saw the tick that got me, and never saw the round, spreading, red, bullseye-shape rash that can occur in Lyme.  Docs however are often taught that because the rash is a GOOD indicator of Lyme, then the rash MUST be present to have Lyme.  No!!  That's backwards, but lots of docs don't understand that.  Sometimes the tick bites on the scalp, and the rash is covered by your hair.  Sometimes the rash just doesn't show up.  Sometimes it looks like another kind of bite. So that's the level of confusion that is out there currently in the medical community.  Just so you're aware, if you're not already.

The good news is that there are docs who DO understand how tricky Lyme can be.  They can be general practitioners (GPs), or internists, or any other kind of doc, but it is oddly often hard to find a doc who understands Lyme among the docs who are infectious disease docs (Lyme IS an infectious disease, often caused by bacteria from a tick bite) and neurologists (since Lyme can cause tingling and aching and so on, similar to what you describe).  As a result, Lyme specialists are found among general practitioners and also among specialists -- even some infectious disease docs and neurologists really do understand Lyme! -- but it's hard to tell sometimes which way a doc thinks.

As a result, you'll see the term "LLMD", which is patient slang for 'Lyme-literate medical doctor" -- meaning a doc who DOES understand Lyme and how to test for and treat it.  An LLMD can be a general practitioner or any kind of specialist, but the natural groups for LLMDs to come from (neurologists and infectious disease docs) are too often clueless.  Sigh.

Sorry to run on, but this is the first critical point for most of us when coming to grips with whether we have Lyme.  And sad to say, neurologists are often among the docs who don't take Lyme very seriously.  It can't hurt for you to go see the neuro, however, and see what s/he says.  Ruling out things other than Lyme is a good thing to do sometimes.

One diagnosis that seems to be given to those with Lyme is the mysterious 'fibromyalgia', which literally means 'pain in the muscle fibers'.  Lyme can indeed have that symptom, but the medical profession overall seems to have decided that there is an epidemic of 'fibro', for which they have found no cause and no particular cure.  Hmmmm.

On the other side, Lyme is indeed treatable and curable.  Unlike most bacterial infections, Lyme takes more than a few weeks to treat, because the Lyme bacteria have a special trick of hiding in cartilage and other areas of the body where the immune system does not easily find and kill the bacteria.  A Lyme doc knows that and treats the patient accordingly, as well as testing for (and treating) other infections the 'Lyme' ticks often carry, called as a group 'co-infections':  babesia, bartonella, and a few more.

                              -- end of part one -- see part two below --