Lymes or Sjogrens? Help!

Infections
1

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!

2

hi, Ive just got a possitive co-infection of lymes result and have all these symptoms and like you all test clear. the other things that are similar are autonomic neuropathy and candidia overgrowth syndrome (especialy the throat clearing,mucas and itching rashes) its worth looking at these but i would recomend being tested for lymes inc. co infections and make sure your GP fills out the correct form from public health england and sends the blood for testing at porton down. lymes disease action are very good supporting and advising on this -good luck

3

Hi Joanne ,

Your having a really tough time atm , I believe your symptoms sound typical of Lyme disease , do you remember a bite ?

Before I was diagnosed which took 3 years of going backwards and forwards to figure out what was wrong with me even though I presented with a bullseye rash I presnyed with much the same symptoms as u , full blood count was normal except for raised white blood cells , thyroid function normal , liver enzymes were high and have been throughout this illness .

My symptoms were

Bruising

Miscle twitching all over body

Tongling , buzzing crawling in random places

Itching all over

Brain fog

Black floaters in eyes ,

Neck and shoulder pain

None pain in fingers wrists knees shoulders

Jaw pain , fluttering in ears

Fatigue

Small pinprick red dots over arms and torso (petichae)

Stiffness .

Reoccurring swollen glands .

My Lyme test came back negative but my doctor told me the test is useless anyway ,and put me on antibiotics , I have been on them 2and a half years now plus lots of supplements and herbals and I'm still not cured , if you do have Lyme then the sooner you start treatment the better , unfortunately our gps aren't very clued up on Lyme disease , contact Lyme action who can help liaise with your doctor on treatment and testing for it .

Good luck

4

Thank you all for your response! Did u all start really suddenly and progress very fast with one thing popping up after another? It's been so overwhelming and scary but my 2 children are the reason I just power through each day! Unfortunately when all this started I went into panic mode and was freaking out, visited my doctors multiple times and A&E and they put it all down to anxiety....so frustrating!! Now I just speak to the neurologist who has confirm something is definitely going on and in his words we'll get to the bottom of it.

At first I was thinking its going to be idiopathic neuropathy but with these physical things happening now I don't think that. I have lost so much weight too (about 2 stone) although I'm still eating lots!

I have looked into Lyme a lot and must admit that a lot of things match apart from I don't recall a tick bite, but then a lot of things match Sjogrens too! I think I'd rather it be Lyme than autoimmune because then at least I have something to fight with antiobics and supplements! Surely if it was autoimmune my bloods wouldn't all be normal??

For those of you who have had visual snow and muffled hearing does this improve with time? I've looked at different diets and things to help but I want to know exactly what I'm facing before tackling it head on and have refused any medication from the neuro until I know which he thinks is a wise dicision but I don't think Lyme has even entered his head to be honest and I haven't mentioned it yet! I have however ordered and received a blood test kit from a German company I got off the Lyme UK website and I'm willing to pay the £370 to get all tests done but need to get my doctor to agree to do my bloods (the doc who thinks it's all in my head) I heard how inaccurate the nhs ones are so rather than going around in circles I'd rather pay for it and get a more accurate result! I've got a small nerve test on 5th may so once the result comes back for that (which I'm sure it will be positive because had the large nerve test and nothing but slight carpel tunnel in one hand) that will give me more confidence to go to my gp.

I feel like my skin has aged so much too and I'm only 29!

Anyway thanks for your responses!

X

5

Hi Joanne ,

I literally woke up one day with muscle twitching all over my body and then I got progressively worse tingling , bone pain , random pains , brain fog etc , I did have a bite and bruising that kept appearing and felt really tired with nasty pain that came and went in my right and left arm but I put all that down to stress before I was hit with body wide symptoms, I think an infectious disease specialist will be better , hopefully when your results come back from Germany your doctor will finally listen , my doctor was the same tried to tell me it was all in my head , I knew it wasn't , nobody can feel this ill and it be all in their head , I like you was only 29 when this all started and a mother of 2 myself im 33 now and am much improved after 2 years of oral antibiotics but im still by no means cured .

Good luck hun