Gradual building of random symptoms - does this sound like Lyme?

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Hi all, I posted a similar post in the anxiety section because, up until now, this has been the diagnoses given by doctors.

I first started experiencing symptoms just over 4 months ago and it has taken various testing (all of which has come back normal e.g. bloodwork, hearing tests, MRI) as well as failure of things like CBT and anxiety medication, for me to really look into Lyme Disease.

- started with sudden tingling/numbness up my right arm and right side of my face accompanied by blurred vision and lightheadedness. This lasted a minute or so then passed. But then recurred a few more times within about half an hour. I panicked thinking it was a stroke and went to A&E. They put it down to possible migraine and sent me on my way

- This happened a few more times throughout the week. I returned to A&E but was basically dismissed with no answers, then went to my GP who gave me Sumatriptan for migraines. It didn't work aside from getting rid of a bad headache I had at the time. I haven't had a recurrence of whatever all this was (the sudden tingling, numbness etc) since then

- I didn't feel well for the next week or so, experiencing random bouts of dizziness and just being very on edge that I felt 'off'

- about 2 weeks after initial symptoms I had sudden extreme dizziness with feelings of faintness and like i was going to vomit. Lasted about an hour, went to bed and woke up feeling dizzy and spaced out/foggy headed

- over the next few weeks I developed a blocked/clogged/full sensation in one of my ears (as well as hearing my voice 'echo' in that ear when I spoke), constant tinnitus and random bouts of dizziness/disequilibrium (felt like i was on a moving boat), sharp stabbing pains in my head in the same spot & head pressure, extreme tiredness/fatigue etc

- the dizzy feeling then began to persist and has done so ever since. I constantly 24/7 feel like I'm on a moving boat. The fullness in my ear went away but now it has started to come and go, that ear has never felt 100% since  - it feels like theres fluid or something in it

- by maybe month 2/3 I started having random shortness of breath (i felt like i couldn't get a full, satisfying breath which would then cause me to panic). This would last an hour or so each time it happened

- also around this time I then started having tingling on the tip of my tongue/a metallicy taste which comes and goes throughout the day every day. Also have visual issues such as floaters, flashes/sparkles & visual snow which I never had previously.

- my muscles tire and get sore a lot more easily than they used to. i also went through 2 weeks where my back was in absolute agony for seemingly no reason at all, and neither physios nor painkillers could do anything to relieve it.

- If I hold my neck at a certain angle, my head/neck twitches almost like a tic although this isn't noticeable i can feel it. I get rushes of really bad head pressure too that last a few seconds

so far the symptoms I have had which have been 'chronic' and not gone away at all have been the constant dizzy, unsteady feeling, the tinnitus and other ear issues, headaches & head pressure, fatigue, tingling tongue and the most distressing of all this constant spaced out/foggy headed/depersonalisation. I constantly feel like I'm 'in a dream'.

I readily admit I am anxious, and I have always been an anxious person and went through a lot of stress in the 6 months or so before all of this happened. However, my symptoms don't worsen or lessen depending on my stress levels - they are constant. And the anxiety I feel isn't what I had before (purely social anxiety and just general negative thinking etc) - now it is extreme hypochondria (because i want to know WTF is wrong with me!!) as well as sometimes racing thoughts and general feelings of fear and uneasiness.

I have a doctors appointment next week where I am going to request a Lymes blood test, although I'm sure she will think it is unnecessary. I'm also aware this may well not be what I have...maybe it is all anxiety? But I live in the countryside and frequently walk my dog through long grass, I travel abroad every year and I lived in England whilst at uni where Lyme seems to be slightly more prevalent (I'm from Northern Ireland). 

I'm actually just at the end of my tether..soo miserable and a shell of my former self. 

I have no memory of ever being bitten by a tick & as far as i know never had the rash. However, I know that this basically means nothing. I get bitten by a lot of bugs when on holiday, my skin just seems to attract them & I always have a really severe reaction to bites (the bite will swell up like an egg, be super itchy and red and usually leave a scar), so I may well have been bitten and possibly even had the rash, but just dismissed it as being a usual extreme skin reaction.

I also, as far as i know, never had flu like symptoms. Which is the only thing that makes me question Lymes...is it possible to basically go straight to more neurological symptoms?? I've never had the flu in my life, the worst i've had is a bad cold and aside from the back pain i had for 2 weeks, i havent had any aching joints or anything. The only thing i can think of is for the past 6 months or so, maybe longer I'm not sure, I would get intermittent night sweats every so often. I would wake up in the morning and my top would be DRENCHED with sweat crumpled in a heap on the floor. I also was tired a lot, taking frequent day naps, although I put this down to being at Uni and being out late/having early morning classes.

I'm only 20 years old and my life is being torn apart. If i did have Lyme Diease, i have NO idea how long I may have had it for which doesn't help. If it has come from a bite I received potentially years ago, that scares the crap out of me because that would mean I'm years into the disease and that seems to make it so much harder to diagnose and treat.

I have no idea about how the disease works, I am totally new to all this. Is it possible that I was infected a long time ago and the recent stress brought it all to a head? Or does it just not work like that?

I don't know where to go from here. What do I do if i get a blood test and it comes back negative? What if it comes back positive? Ahh

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26 Replies

  • Posted

    Hi so sorry to hear you're not having a good time health wise, I can totally empathise. I fell ill unexpectedly last year but with slightly different symptoms to yourself. I have had every test known to man but with no definitive outcome as yet other than from private blood work done for extensive Lymes Disease from a lab in Germany (msg me if you want details don't think I can put them in here). I decided to do this as I'd heard how inaccurate the NHS Lymes tests are. I'd have the NHS Lymes tests and if its negative and you're still not happy I'd pay for private Lymes blood work as other labs abroad are far more accurate I believe. You order the tests online, find someone to draw the blood either gp or private hospital, then the blood is fedexed to the desired lab.

    Good luck!

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    • Posted

      Thanks, yes I'd love details of the lab! Are you receiving treatment now for Lyme? And how long did you have symptoms for before you got diagnosed?

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    • Posted

      Ok no problem I will message you them. I took my German lab results to my GP which she took seriously and referred me onto our local NHS infectious diseases dept I am currently waiting to see one of the few and far between apparently Lymes literate NHS Consultants. I'm also looking for private alternatives too but haven't decided where yet as we have very few options in the UK.

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    • Posted

      Brilliant thank you! That's great that your GP took you seriously, i have read a lot of peoples' GPs don't take testing from abroad into account at all. I'd worry that mine would do the same, but i have no idea.

      I feel like there will be no lyme literate doctors where i live sad it seems even less well known in NI than in mainland UK. Which worries me

      Thats if i even have Lyme i suppose! I'm kind of diagnosing myself but I'm desperate for help

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    • Posted

      It is I'm v lucky to have such an understanding GP. I know its easy to say but try not too worry too much as you may not have it. Take one day at a time, have the required bloods and take it from there.

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    • Posted

      I suppose I just worry that, if I do have it, the longer I wait to find out the harder it will be to treat! I just want to start on antibiotics right now and see if i react, lol.

      How long were you symptomatic before getting your positive lab results?

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  • Posted

     Hallo tabby,

    Welcome to the world of life with  what sounds like Lyme.

    I  too have had most of what you have had but with arthritis, intolerable itching,  terrible pain dry mouth  etc etc etc, Diagnosis"eczema"!

    Bllood tests normal, x ray normal, Lyme test(if there was one done ?) normal.

    The anxiety especially in a normally anxious person is a result of the disease.

    Some people go for years undiagnoes,

    I like you have been bitten by various insects in the garden(lots of trees) but fewer than 50% of sufferers have the visible tick and the bull's eye rash.

    Are your eyes affected in any way? Double vision, floaty specks, sharp flashes of light, wriggly things?

    Do you have car sickness that you've never had before or not for years.

    Do you have upset bowels, a swollen stomach or lack of appetite.

    Does the mettallic taste make you go off foods/drink/ water that normally tasted fine? Have you noticed a lot of small round bruises that seem to appear from nowhere?

    Stress damages your immune system so that you cannot fight off illness so well.

    So you need to build up your immune system to fight this. Yes. I have had this for some years but it was stress that caused mine to escalate into something unmanageable.

    Go back to Dr. Ask her for  Lyme test. Blood  usually sent to Porton Down for testing and may take a while for results)

    You really don't want to know how this disease works! Just make a list of all the strange symptoms that you have noticed and give it to her.

    If yor parents  have money then you can have your blood sent to Germany for testing. You will get the results in 24 hrs. They test for co infections.

    Mind you this will not satisfy the NHS as they only treat you if the Porton Down test is positive.

    But test or no test keep going back to DR until she does something for you.

    If it is Lyme Disease then it needs treatment by antiiotics for three months if it's late.

    Or you can go down the homeopathy road. Do not dismiss this as useless.

    Believe me it works. Aqupuncture does too.

    Symptoms of so called fibromyalgia also mimic Lyme.

    Tell yourself you will get well and try to keep positive.

    Don't let the medical profession label you . Ask for a skin scrape test and  another Lyme test.

    Lyme disease is caused by particular bacteria called spirochetes that are carried in ticks, mice mites and bird mites and not only deer. Once in the blood stream they penetrate the cell walls and go all over hence the many symptoms.

    There has been a lot of research in America .

    If your immune system is strong then you can fight it.

    Try to cut out sugar and carbs from your diet as spirochetes thrive on sugar.

    Think of the sympton that is bothering you the most and get the Doctior to treat that.

    Eat plenty of green vegetables and  fresh organic foods. 

    Keep your spirits up. You are young and have time on your side but you have to help yourself.

    Anxiety runs in families. Is your mother anxious?

    Because we are anxious Doctors tend to believe anxiety is causing the illness. Make sure to tell your that this illness of yours is causing heightened anxiety.

    Others on here will say consult a Lyme Disease Literate Doctor. 

    In Uk these are few and very expensive.

    The UK does not want to accept that Lyme is here  in the communities and needs treating. IT just puts its head in the sand and hopes it can fob people off with labels of "Depression",

    It does no research because it says why duplicate USA research.

    Let us know how things go.

     

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    • Posted

      Thanks for all your advice!

      Yes my eyes are affected, floaters (of various shapes and sizes), flashes, blurry vision sometimes, visual snow etc. I got my eyes tested yesterday and I am now short sighted and need glasses - which may be coincidental as admittedly I haven't had my eyes tested in years

      I don't have carsickness no, actually being in the car seems to help with the dizzy/rocking feeling!

      I have a lack of appetite and have lost weight as a result, and yes I have upset bowels quite frequently, have the runs pretty much every day. 

      No the metallicy taste hasn't affected the taste of foods, its just very annoying and always there making my tongue tingle. 

      I just downloaded a form for sending bloodwork off to Porton Down which I will give to my GP. I'm presuming that this will be okay even though I am in NI, but I don't know. 

      What is a scrape test?

      Yes my mum is quite an anxious person and I believe that's where I get it from, however it has never been as debilitating as it has been the past few months. 

      I generally eat quite healthily but will make an effort to cut out carbs and sugar and continue with all my fruits and veggies.

      Have you been treated for Lyme? I am so scared that if it is Lyme that i have that i will never get better sad it seems like such a complex illness to treat and with so much info online i dont know where to begin... i havent even had a blood test yet!!

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    • Posted

      Also, if you have had the illness for several months/a long time and it has advanced a lot, does that make it less likely that your blood test results will come back positive?

      I have never been given antibiotics for anything before (always been healthy and come from a generally healthy family) so I know that can't have skewed my results

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    • Posted

      Not necessarily. Late Lyme often shows positive and certaily should with the German tests.

      Whatever it is you can fight it.

      Don't be scared.You can heal yourself. If I can at my age then you can.

      x

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    • Posted

      Hi Marie

      What have you done to heal yourself? I'm at the start of my healing/treatment and I'm at a complete cross roads as to what to do and whete to go next. You can message me if thats easier.

      Thanks Sarah

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    • Posted

      No tabby,

       My GP is kind enough but  doesn't believe I have Lyme. We have no cases of Lyme here.(Ha ha)

      Private dermatologist says its eczema;

      Psychaitrist says its depression.( The anti depressants are still in the packet unused as are the anti histamines(antihistamines don't seem to help). ( And my spirits are fine. besides i have had depression in the past and know it inside out and outside in.

       I was not depressed just desperate and tearful.

      Non existent excema with Dermol cream. Nice but useless.

      I hada telephone consultation with a Dr who cures Lyme disease. he said it was eiher Lyme or  Fybromyalgia.. £200 for a Lyme test and £ !0,000  to cure me. I did not take up his offer.

      So I am very glad for you that your Gp was on the ball.

      A skin scrape is when they just take a wee bit of skin and look at it under the microscope.   It can tell a lot.

       

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    • Posted

      It makes me sad because I've spent about £1000 on specialists (ENT, Neurologist, Psychiatrist) as well as money on various testing (hearing test, MRI) which, although beneficial as it ruled out certain things, feels like SUCH  a waste of money which could have been put towards Lyme if it turns out that this is what I'm suffering from (e.g. paying for private blood tests or possibly travelling abroad). That money would have come in very useful for doing so.

      I was also prescribed antidepressants from my pdoc, which I took for 1 week and hated so haven't touched since. 

      I just joined a facebook group for Lyme so am looking through various bits of info about it all. It's helpful as they recommend doctors and clinics

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    • Posted

      Don't be sad Tabby,

      Life is all a learning curve.

      I too spent thousands I do not have  and I haven't even got the £400 or so for the test yet. 

      The trouble with Lyme in UK and Ni is that we don't have enough folk die of it yet to make them do anything.

       Folk my be dying of it but not enough post mortems are done.

      You need tthe support that internet sites can give .

      Some are very informative..

      You are young and were very healthy so you can beat it.

      Your immune system has taken a knock but build it up and you will get on top of it.

      Anxious folk are usually more sensitive and more in tune with their inner selves 

      My daughter recently told me it was genetic as that was how her Doctor explained it. Being anxious protects you from danger. We just have a bit too much of it that's all. My mother was overly anxious but it saved her life on at least two occasions.

      Tell yourself you are very strong and can weather anything..

      Going through this will make you stronger.

      I looked at the antidepressents and opened the box and thought NO I have managed all my life without them. I don't need them.

      Be wary of Drs and clinics. Go for one that is personally recommended by someone who is on the road to being cured.

      I wish you well.

       

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    • Posted

      It scares me because I have no idea how long Ive potentially had Lyme. I keep thinking back to any symptoms ive had over the last few months and year - like ive always suffered from bad headaches for years for no reason, possibly related? Ive had the odd night sweats intermittently over the past year, again possibly related? I'll never know. Maybe they were coincidental and I only contracted it a few months ago... again ill never know!

      I just want to feel myself sad

      Im getting a recommendation of a doctor in dublin from a girl who is improving so thats good.

      Thank you i wish you well also

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    • Posted

      Don't be scared.

      Whether you have had it three monyths or a year makes little difference.

      The headaches may have been migraines. I had  those .every weekend for years and years 

      I think had you had it for years you would be more fatigued than you are.

      Of course you want to be yourself and you wll be again. It may just take a bit of time.

      It is good that you've had various tests as they have ruled out other possibilities.

      Do what you can by diet and sunshine and gentle exercise.

      See what your Doctor now advises and take things a step at a time.

      Count the positives such as a day with no tears. That's good. A day when you can manage the pain. That's good.

      Think of your worst symptom and try and get that fixed.

      And remember people can be cured of Lyme.

      Remember the body cna overcome almost anything if given a chance.

       

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    • Posted

      I thought that the sooner it was caught the easier it was to treat? Not that I could have caught it any sooner than 4 months ago as thats only when my problematic symptoms started.

      I hope you are right, the thought of the long struggle ahead of me makes me so scared because of how young I am. In some ways I wish I was middle aged or something, as this is ruining the best period of my life - or what should be.

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    • Posted

      Tabby,

      You are right in that caught early it can be cured with three weeks antibiotic treatment so those who go straight to the DR with the recent bite and the rash should have no problems .

      BUt  whenever you caught it, if it is Lyme Disease, then it should show up now in the blood tests that the German labs do.

      You are young and were very healthy so that is all in your favour.

      It is a misery at any age. For young/ for those with children or  for the old whose immune systems are poorer..

      Perhaps you could discuss with the Dr the need for antibiotics now.

      What has she prescribed so far?

       

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    • Posted

      Im yet to actually see my doctor thats the problem! I have an appointment with her next week to ask about blood tests, however I may order the german blood kit now so I have it in time for the appointment to save time. Just as im aware the NHS tests may well come back negative so it would save me time having the german ones done at the same time.

      I dont know whether ive been potentially infected for months or years and all my recent stressors have weakened my immune system and brought Lyme to light rolleyes its all so confusing. Im even sitting looking up recommended Lyme doctors way over in the US right now! And i havent even got a bloody diagnosis! Lol

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    • Posted

      Right .

      When you see the Dr tell ask her "could it be Lyme disease?".

      She will either  vigourously deny it or say" Perhaps it might be"

      Ask her if a Lyme test was done when your bloods were taken and if not then can she do one.

      Then you can mention the German lab testing.

      You will need to arrange blood collection from the blood nurse at the  Drs. practice so perhaps you can arrange this and query the cost  when you go next week.

      I see that Lyme disease has quadruopled in N I so she must be aware of the disease.

      I know this must all be very hard for you but keep calm and just explain things to her.

      Perhaps you might suggest she starts you on Doxycycline?

      She may say she thinks you have Fibromyalgia?

      Some symptoms are similar. One wonders how many Fibromyalgia patients have been tested for Lyme disease..

      I too have the ear problems and have to keep turning the TV up and down. My ears feel fuzzy and clogged and there is a constant ringing noise in them.

      I no longer have the dizziness that was causing so many falls.

      This is not an easy disease to diagnose . It has so many disguises.

       IF it turns out to be Lyme then tell yourself that you can get well .

      If an old woman, well past her sell by date, can beat it then so can you.

      See if there is a Lyme Disease group in NI.

       

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    • Posted

      Tabby,

      Google Ticktalk Ireland.

      It's full of interesting stuff.

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    • Posted

      I just found out that my neurologist i had been seeing is the only consultant in NI who knows about Lyme - what are the chances! So going to make an appointment to see him again
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    • Posted

      I was referred to the hospital by my GP but it was just by chance that this was the neurologist I saw. He never mentioned Lyme although did acknowledge it all sounded like more than just 'stress'. I'm going to make an appointment to see him again and will get my blood tested before this. Apparently although he is knowledgeable he is not an expert on Lyme, but should be a good starting point to look into treatment and improving things at least a bit

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    • Posted

      Just reading through your posts as I have had a load of similar symptoms as you, how did you manage to get on ?
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