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Another question please
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Another question please

Can I ask everyone a question regarding lyme/ms
My symptons used to come and then leave, such as bilateral face pain.
June 2007 I had a terrible cold and whatever 'hit' me was all over my body, I had
tingling hands      7 months
tingling feet          7 months
tingling groin         7 months
bi lateral face pain   8 weeks
dizziness                still have it today and eye dizziness
numb feet               still have them today
burning patches all over body    still have them today
cold water dripping all over     still have it today
zapping                   sometimes
The cold air in winter burns me, and for the last 12 months or so I have had burning in mouth, rooftop of mouth, lips and when I suck in air, it feels like I have been sucking on a mint.
I have burning in my back mostly when I'm in the cold and walking around,
If I rub my leg or arm in a spot I feel it inside like cobwebs in a different spot on me.
I wake up mose morning with numb hands
And the latest at the moment is a new burning patch on my left buttock, it just comes and goes.
In heat my tingling returns, this is the only sympton that worsens in heat.
My mri's so far have all been clear, last lot though were 2 years ago, also my L.P. was clear.

My neuro told me that I must have ms but he can't diagnose me with it as all my tests have been clear, thats when I found my Dr who wanted me tested for lyme.
It has now come back positive igm with igenex, but then I hear all the stories about aussies unable to get it etc.
I'm really confused, I have script here with 4 meds to take, and haven't yet put it in.
My daughter when 7 had optic neuritis symptons, then again 12 months later and again, today she gets pins needles in hands and feet often and her eye blurs over.
24/7 I have a horrible feeling inside my head (very hard to explain) like a mild burning or aching, and I sometimes get words and names mixed up.
If I tilt my head it feels like water is inside my ears, but Dr has said my ears are fine.
My symptons have been in the same spots mostly since 2007, I have read that lyme moves around body in 4 weekly cycles, so I am currently questioning my diagnosis of lyme.
Does anyone on here who has lyme can they relate to my symptons??
Or does anyone with lyme on here, have their symptons come then go then come back again in a different spot???
Thanks all
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6 Comments Post a Comment
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Avatar_f_tn
I can appreciate your situation -- I was in a similar situation a few years ago.  I had been through about 20 MDs of all kinds, including neurology, infectious disease, endocrinology, and others.  No one knew what was wrong, and only one doc out of ~20 I saw had the grace to say that he knew I was sick, he just didn't know what it was.  It was confusing and frightening to be put in the position of trying to out-think the smart, trained MDs I was looking to for help ... and all while my brain was fried, and I was frantic from the effects of the diseases I had but no one could find:  Lyme and babesiosis.

I was fortunate never to have gotten an MS (mis)diagnosis, because once that is in the records and the docs keeping banging on that, it is hard to get them to look beyond it.  There is willful blindness rampant in the medical community about Lyme, and I can certainly understand what you are going through.

Sadly typical of your neuro to say that you 'must' have MS although your tests are negative, and good for you for finding another doc.  We hear the same stories in the US about there being no Lyme except on the East Coast (where Lyme, Connecticut is, the place that 'Lyme' disease is called after), and certainly not here in California, 3000 miles away from the East Coast.  While most docs in the US will grudgingly admit that Lyme does exist, they believe it to be so rare as to not be worthy of consideration in making a diagnosis.  Thus you are not alone in this experience.

I would suggest you look online for 'Australia lyme disease' and see what you get.  There is a post with some follow ups about an Australia lyme disease association and mention of a Dr Peter Mayne in Laurieton NSW.  At least it's on the same side of Australia as Queensland, tho not exactly in your neighborhood.  He has a website with some information.  While you may not want or need to consult a new MD at this point, knowing that there are others (both MDs and fellow sufferers) can be helpful, just as this website has been and is to me.  Also, Mayne's website or contacts you find there may be helpful to you.

But back to your current doc who seems aware and accepting of the concept of Lyme disease.  Forget the neuro you saw; he is history.  Neuros and infectious disease (ID) docs in the US are well known as those most adamantly against the concept of Lyme, and sadly they are specialists who could, if they had open minds, could be of most assistance to us.  I will spare you the details of my encounters with neuros and ID docs, but suffice it to say that I would not consult them again because of their willful ignorance.

I understand your confusion; I too was confused, and part of it is the brain fog that the disease causes.  Anxiety and confusion are the most significant memories of my time before I began treatment, worse than any physical aches or pains.  My best advice to you is to take your meds; I too put off taking mine, because I was so unsure of the diagnosis and treatment, and I feared that side effects of the treatment would wipe out what little ability I had to get through the day.  But once on the meds, I began to get better, slowly but surely.  And I got better from there, day after day.

About the 4 week cycles of Lyme:  I could not see cycles like that in myself, and I would not worry about that as being a reason to ignore the Lyme diagnosis.  There was so much other misery going on in my body that I could not discern cycles of anything.  I had not only Lyme but also another 'bonus' disease brought by the tick, babesiosis, which is like malaria, so my symptoms were an indistinct mess.

About your symptoms staying in the same places and not moving around:  again, don't worry.  A key thing about Lyme is that it does not manifest the same way in everyone, and in the same person, the symptoms may change and move around over time.  It is variable that way, and it is part of the confusing nature of Lyme.  Don't torture yourself over that aspect.  I have never had some of the classic Lyme symptoms, and I've had some little odd ones that I am not sure others get ... but that is part of the trickiness of Lyme, that it is a changeling.  It is not a regular disease, and that is why docs have such a hard time conceptualizing and dealing with it.

I would take the meds.  You need to be in good shape to take care of your daughter.  My child also had Lyme, and recovered very quickly and completely once I focussed on the concept of getting the treatment underway.  I know where you are in this miserable disease, and encourage you to simply start treatment.  If your doc has not tested you for possible co-infections, then have that conversation at your next appointment.

Simply begin.  Set a day, like Saturday this week, and know that you will start meds that day.  I know how frightening it all is, and I was afraid that meds would make it worse and make me totally non-functional -- but it did not.  I got better, slowly but surely, and never looked back.  You can too.  Let us know the day you start the meds!  We'll be waiting to hear.
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Avatar_f_tn
I have had lots of similar symptoms, particularly the numbness and tingling in hands and feet.  I have had burning skin sensations, again mostly on my legs and arms.  At times it will feel like I've rubbed the muscle rub, Icy Hot all over them.  That's the best way I can describe how it feels.  You mention having a burning mouth, I have not had that, but my tongue will actually tingle at times.  I have had a feeling of warm water dripping down my leg, although that has actually been gone for a couple months now.  I have also had the "weird feeling in my head" that is difficult to describe.  Sometimes it will feel like my head and sinus area is vibrating when I talk.  All very bizarre stuff! :)  

I also constantly question my diagnosis and wonder to myself, "really, is this all from Lyme?"  MS was ruled out for me as well.  I have a Igenex positive western blot and a Igenex antigen urine test that was positive too.  I don't see any clear symptom patterns either, but have been told I probably have a coinfection which can complicate everything.  

I would definately try the medication prescribed to you.  Good luck! :)

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Oh gosh Alley:

I'm so glad you posted.  I see my LLMD tomorrow and just remembered that I wanted to ask him about that Urine Antigen test.

Thanks!
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Avatar_f_tn
yes, you should!  I've heard the antigen test is a fairly  accurate test, however, there is not much information about the test when I google it.  I'm curious to see what your LLMD says about it and if he thinks it's worth ordering.  Good luck!  Let us know how it goes.  

Ally
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I have experienced all of the symptoms you describe, including the heat intolerance and the lack of a definitive pattern.

You're in charge of deciding how to proceed and whether or not to try the Lyme treatment.

Loosely translated, multiple sclerosis means "multiple scars."  If you have tons and tons of symptoms but a lack of "scars" (such as from enhancing brain lesions or noted deficiencies in a neuro exam or abnormal evoked potentials) then it makes sense to think that MS is NOT what ails you.  (Note that I'm NOT medically trained, this is just my way of thinking about it.)

As with all of life's big choices, consider applying a risk-benefit analysis to the idea of taking the Lyme Rx's.  In my case I felt that the risk of trying Lyme treatment was low, while the potential benefit of treating my condition was high.

Personally I'm very grateful that, despite my significant doubt that I could have Lyme disease, I did end up trying the treatment.  I am normally a black-and-white person who seeks definitive evidence, but when it comes to my illness, I've accepted that I might never really know exactly what hit me.  Perhaps it isn't Lyme, but I do believe it to be an infectious disease that does respond to the antibiotic therapy Rx'ed by my LLMD.

Of course your mileage may vary, I'm just sharing my point of view and experience.  Best of luck in deciding how to move forward.


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Avatar_f_tn
Hi
Thanks again everyone.
I'm a black and white person too!!!!
The kids are on school hols for 2 weeks, and I'm having a break.
When I get back, I will go see the Dr and put the script in and take the meds.
Will let you all know how I go
Thanks again for all your help.
Melissa
xo
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