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joanne57522 joanne57522

Sjogrens or Lyme??

Okay so cut a long story short I have had a number of symptoms starting 6 months ago and have progressively got worse ever since! I've had MRI - normal, thyroid test - normal, neurologist tools lots of blood test looking for inflammation and tested for Lupus - all normal! He's now sending me for a lip biopsy! Here are my symptoms -

- Persistent swollen glands in throat (lots) - all reactive according to ENT

- thyroid nodules

- neuropathy

- Eustachian tube dysfunction (& muffled hearing)

- visual snow with all the trimmings (photosensitivty, increasing floaters etc)

- itching skin

- dull toothache

- tinnitus

- thinning skin (veins very noticeable and bulge)

- tickly throat and dry cough

- thick phlem at back of nose

- occasional dry eyes

- ear ache

- muscle aches and pains

- joint pain

- on / off mild fevers

- tiny pin prick like spots on torso, arms, thighs

- blotchy skin

- pigmentation in skin (dark around mouth and nose and blotches in other parts of body)

- skin dints very easily / shiny palms / stretchy skin

-constant clearing of throat

- spaced out feeling

-dizziness and vertigo

- headaches

- stiff and aching neck and back

- random skin rashes that come and go but chest is red and blanches

- cold hands and feet

- shivers (get goosebumps all over body for no reason)

- Finger tips sometimes turn blue

- brain fog

- fatigue

- wart like tiny blister looking spots on palms and palms look extra wrinkled and shiny

- joint cracking especially neck

- night sweats (at the beginning, occasional now)

- constant buzzing feeling all over body

- can see heartbeat through clothes / palpitations

These a few more things but I won't bore you all with more!!

Anyone else with lyme had these symptoms? The most concerning is the vision and hearing which really concerns me! Can I have Sjorgrens when all my bloods are fine?? Please help

Many thanks in advance!

6 Replies

  • jordan58854 jordan58854 joanne57522

    The first thing I thought was Lyme, then I read that you think Lyme. Probably, not all of these symptoms are related. Buzzing all over and neck pain could be a disc or stenosis. How old are you? It is very good that your blood work is negative. Rejoice in that. As far as fever, how high? That could be related to Lyme because Lyme is a baterial infection. In regard to your skin conditions, go to a dermotoligist very soon. You could be having a reaction to somethng. 

  • sylvia04980 sylvia04980 joanne57522

    Once your immune system goes down, anything can cause problems.  I've tested positive to many different viruses (except lyme..lol) and I've experienced many of the same symptoms you have.  My diagnoses are chronic fatigue syndrome, multipe chemical sensitivities, POTS, hypothyroidism and that's all I can think of at the moment.  One thing that has really helped me was to go gluten free and organic only.  It has helped temendously with the brain fog, vision problems, skin rashes, buzzing feeling and joint pain.  I think there are many, many people walking around with aches and pains that don't realize their problems are gluten related. And who would think their neck or joint pain was caused by the pizza they had the day before?  I know I didn't!  Try if for at least a week and make sure you're completely gluten free.  That means not even gluten free foods because even those foods have small amounts of gluten.  Or you can opt to be tested for food allergies.  Make sure gluten/grains are part of the test.  I have had to cut out all grains, even popcorn sad  My doc is testing for Sjogren's as well but I think I have gluten ataxia which is caused by the gluten obviously (however, Sjogren's can also cause neuro symptoms).  Don't wait until you start slurring your speech or walking funny because that means you're dealing with brain damage (which can reverse once on a zero gluten diet).  As far as the viruses, I'm on a prescription antiviral.  It seems to be helping, I have more energy now.  Today I start low dose naltrexone.  We'll see what happens.  I hope this gives you more ideas to research and i hope you find your true diagnosis soon.

  • frustrated61 frustrated61 joanne57522

    Hi Joanne ~

    I was diagnosed with Sarcoidosis in 2005 and it, unfortunately, is still active and causing havoc.  Many  of the symptoms could be related to Sarcoid.  I also have Sjogrens and some of the symptoms are the same but there really are too many that arent.  Sjogrens, for me, is playing havoc on my extremly dry eyes...having to use a gel drop 4 times an hour and always have an antibiotic drop script plus at night I have to use eye ointment so my eyes don't dry that my lids stick to my eyeball...believe me, this has happened a few times (even with ointment) it is very painful.  I've also had 4 scratches on my cornea...also very painful.  I have all kinds of "gunk" for lack of a better word, that bother me.  My  eyelids swell up to the point my eyes are almost shut.  I have to wear special lenses that lubricate my eyes for at least 8 hours, however, I cannot wear them if an infection or scratch is suspected.  The feeling of very thin wire; a feeling of cotton; cysts and more come with the sjogrens and sarcoid when it's active and running.

    Anyway, I believe you should go and have your tests.  For Sjorgens I had to have my tear ducts were soldered closed (VERY painful).  I have sjogrens on the cartilage from my nose.  

    I just hope you don't have sjogrens and if you do that it's not as aggressive as mine is.  I also hope and pray that you doctors take this serious and they are aggressive in finding out what you have.  Bless you.

    Frustrated 61

  • jordan58854 jordan58854 joanne57522

    Get checked for Addisons' thyroid disease which Kennedy had. It is treatable. Pigmented skin is a symptom amoung many others. 

    • frustrated61 frustrated61 jordan58854

      Thank you Jordan ~

      My ENT doctor checked already to see if I has Addisons' disease and I don't.  I did have half my thyroid removed bc of 3 lumps on one side.  But, I will again ask if she's sure I was checked and no worries.

      Warmly,

      Frustrated61biggrin

  • christine 73623 christine 73623 joanne57522

    Hi

    I too have maney of your syptoms, I have SS,  i have been  diagnosied now for over 22 years but had it at least for 32, i am 53 now, my vision is okay and i do wear glasses, but the last eye test that i had,  my eyes had hardly deteriated at all, and that was 3 year gap from the last time I had them checked  One thing i have noticed is my hearing now has deterated alot.I actually went to have the wax taken out of my ears thinking that was the problem but no, I do need to wear a hearing aid they said,And yes you can have SS with all your bloods are fine because mine were too in the early years of it, although now my kidneys and liver rung a bit high, 

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