1. Community
  2. Infections
  3. Lyme Disease

Got my first hospital appointment on Monday, what should I expect?

Posted , 4 users are following.

aromasammy
aromasammy

I am new to this forum, having spent several weeks researching Lymes Disease. I got bitten by 2 ticks which resulted with the Bulls eye rash. One was on my ankle and the other on the back of my leg. I never felt the bite and only noticed when the rash came out. I could see the puncture wound and the rash expand as time went on. My ankle one was small, but the one on the back of my leg grew and covered the entire back of my leg! At the time I thought I had been bitten by a spider, so researched spider bites but nothing resembled the rash I had...it was months and months later that I came across the same rash in pictures on the internet when I was researching another problem I had, that it was a tick and that this was first stage Lymes Disease. I don't remember having any flu like syptoms, but do remember slapping on the IB gel over the rash as it was uncomfortable. I rememeber now complaining to freinds that I felt 'unwell' but never saw the doc, as how do you just go to one saying you feel unwell?

I live in Madeira, live next to a banana plantation and know that with the amount of time I spend in my garden, my ticks were lurking in my back yard!

I forgot about it and got on with my life.

I would say that in the last 6 months my feeling of unwell returned. Fatigue and random pains in my joints.

My neck glands would swell up and down like a yoyo, some days worse than others.

Headaches that would last for days, pressure at the back of my neck. But I am a cluster headache and migraine person anyway...but these seems different.

My knees, were the first and biggest problem for me as they have deteriorated quickly...give out at any opportunity and squeak and creak when I flex them. Some days they swell up at the back of the leg.

Random pains and aches, here one day gone the next.

But the worse and most debillitaing is the brain fog, memory loss and fatigue. Again random, a few good days then a couple of bad ones and the feeling on being unwell...can't describe it, just don't feel well!

Over the last few months my toes (the two either side of my big toe) just go dead, mostly the left, some times both. It's irritating!

But i the last few weeks I have now started the tingling. Last week I woke up and couldn't walk as the pain in my knee was unbearable....by mid afternoon it was fine.

A few days later I woke up and my left hand was in agony, as if I had fallen on it in my sleep and had sprained all the tendons and muscles, I couldn't hold a cup...the pain was excruciating.

I felt so ill, I drove myself to the hospital and was given a jab of diclofenac in my bum, prescribed strong anti inflamatories and told I had fibromyalgia. Was assured my knees were arthritis and that I would have some blood tests and xrays when I would next see my doctor.

This is the fun part. I live on a foreign island and haveonly just got myself into the medical system here. I never go to the doctor and hadn't seen one for about 2 years. So on Monday I had my very first appointment with my local GP. English is not his first language and having sat with me for a while listening to my bizzare non sensical problems in a language that is not his own, his diagosis was that I see a shrink and get a psych evaluation. I left feeling humiliated, offended BUT frustrated as I had got to a point where I was conscerned and needed to talk this through with a medical proffessional that my suspicion of having had the bites, the rash and not seeking treatment at the time, could be connected to what I was going through now.

I wrote to him the next day explaining this and attached copies of some information I had got off the internet. Chose my words carefully expalining that I was conscerned and that if he took the time to read through the material and felt there was some milage in this to contact me back. I have to say as a result of that appointment with him, I was never going to go back to him.

The following morning he rang me personally, apologised and insisted on me seeing him that day. I went back and spent an ahour and a half discussing my symptoms, the bites, the rash, how I felt at the time. He did several tests and ruled out fibromylagia. Showed me pictures of rashes and had himself researched Lymes on the internet. He had already called the hospital and spoke to them, telling me they wanted to do a study on me. Apparently getting Lymes in Madeira is rare, although they have had a few cases of it reported.

I had 5 vials of blood taken and urine sample yesterday, then he insisted on seeing me again and said that the hospital would call and I should expect an appointment with them within a week to 10 days. He also said that at this stage my infection would be difficult to treat.

The hospital called me yesterday afternoon (Friday) and I have an appointment for Monday I am shocked at the speed of this but am worrying as I have no idea what to expect as I have to take a translator with me as no one in the disease department speaks English!

I felt fine yesterday and started to feel like maybe he was right and I need to see a shrink as this is all in my head, but then I woke up this morning as my thumb on my left hand was twitching which spead to my index, then middle finger.....it wouldnt stop, a freind came over and saw it and couldn't belive what she was seeing. My right kidney area has been aching all day, and I had stabbing and needle prick feelings in my head this afternoon. This evening it has all calmed down again, apart form an ached from my left hand to elbow...tomorrow I will probably be fine again.

So my question here is, what am I to expect on Monday....will I have any more tests and what are they likely to be? Has anyone had a similar experience and symptoms? Am I alone in this or am I completely bonkers?

 

0 likes, 20 replies

20 Replies

Next
  • fat_fingers
    fat_fingers aromasammy

    Posted

    Hi sorry to hear of your problems. From research and my own experiences people are often labelled as hypochondriacs. I have been unwell for 18 months, initially was diagnosed with inflammatory arthritis and put on high dose of steroids, this is the worst possible thing I could have had!  Consequently never got a positive blood test for lyme as steroids would have stopped me producing antibodies. The rheumatologist insisted was then viral illness and is now saying is seronegative lupus. That means despite having 3 neg tests for lupus I have it but had 3 neg tests for lyme so couldn't possibly have it! Incidentally 98% of people with lupus have + test yet less than 50% of people with lyme get + blood test.  The blood tests for lyme is not very reliable.  I took myself off to see a specialist and am now on antibiotics for 3 months.

    i can relate to many of your symptoms and nothing surprises me with this bizarre illness. I have suffered pain everywhere, hot/ cold sweats, anxiety/ panic attacks, burning/red hands and feet. Bad night sweats and insomnia, fatigue so bad could not work for 9 months. Ended up in AE with tachycardia and palpitations. Weight loss and the gain due to steroids. From the start suffered neurological symptoms, numbness, widespread muscle twitches, tinnutis, altered sense of smell.

     

  • fat_fingers
    fat_fingers aromasammy

    Posted

    Sorry somehow iPad froze mid reply.

    Just wanted to finish by saying I also experienced the twitching fingers on both hands...very weird. I believe this is due to inflammation and swelling of tendons.

    suggest you look at Symptoms and Treatment recommendations as well as a description of some risk factors which can cause chronic form of Lyme Disease by Dr Petra Hopf-Seidel (August 2012), it is very interesting reading and explains many of the weird symptoms.

    good luck.

    • aromasammy
      aromasammy fat_fingers

      Posted

      Thanks for your reply, it was helpful. As you took yourself to a specialist, did you have any other tests over just blood and urine or did he treat you based on the sypmtoms? I have read that the antibiotic treatment can either be given by IV which means a stint in hospital or oral, which can be treated at home.

      As the blood tests can be inconclusive, and I only had mine on Thursday, I am also assuming that mine will have to be sent to mainland and this could take some time, so are they likely to start any medication before the results come back?  

      It is so frustrating not being able to talk about this to someone in my own language and my fear of being understood through a translator on Monday is worrying me as well. Thanks to finding this website and havng people like you to converse with here has been incredibly helpful.

      I hope you are on the mend smile

  • caroline91964
    caroline91964 aromasammy

    Posted

    If you have been bitten by a tick and had the classic bulls eye rash reaction, it's vital that you are prescribed a minimum 28 day course of antibiotics, usually Doxycycline. This is recommended by Public Health England and the NHS. You don't need a test to confirm your Lyme Disease, the GP should make a clinical diagnosis based on your symptoms and the fact you have had the bulls eye rash. 

    My advice to you is to write down in order everything that you can remember, from the date you were bitten, when the rashes occured and on which part of the body and your physical symptoms that followed.

    It's very important that you are put on antibiotics a.s.a.p. as the longer you leave it, the worse your condition will become, if you have Lyme Disease (and it sounds likely that you do).

    If you are a UK citizen and you don't have the medical support in Madeira, go back to the UK and get treated there. Refer to this website (http://www.lymediseaseaction.org.uk/wp-content/uploads/2014/09/Suggested-referral-pathway-symptoms-Lyme-disease.pdf) and look at "Pathway to Treatment" which is what you should show your GP and is the route to treatment recommended by Public Health England. A GP can't argue with that.

    Also, look at the Lyme Disease Action website. This association is a recognised source of information by Public Health England and the NHS. Doctors can't argue against it.

    My further advice to you is take control. Many GPs, whether they are in the UK or abroad are uneducated in Lyme Disease, but will attempt a diagnosis that is entirely inappropriate for you. Remember, this is your body and you must find yourself a doctor that understands the correct treatment for Lyme Disease and will work with you to cure it.

    Here's the good news, you are in the fairly early stages of Lyme Disease, so a 28 course of antibiotics should cure it. I was diagnosed after 4 months of misdiagnosis by my GP, but after a 28 day course of Doxycycline, I have no symptoms at all.

    Good luck and please keep us updated. All Lyme Disease patients have had to fight for treatment, be prepared to do so too.

    • aromasammy
      aromasammy caroline91964

      Posted

      Thank you Caroline for your excellant advice. Your post was held for monitoring, so I couldn't read it until now.

      Having found this discussion board last night and reading all the posts and replies to mine, I am feeling much stronger now about what to do and how to react if I get the brush off. I just wish I had gone to the doctor at the time of my rash..all my freinds told me to, but I lingered and did nothing about it at the time.

      Will let you know how I get on tomorrow, am hoping that they will take it on the rash and now my symptoms and I won't have to wait on the blood results.

      Thank you smile

    • caroline91964
      caroline91964 aromasammy

      Posted

      You're welcome. I cannot stress the importance of telling the doctor about the tick bites you had and the bulls eye rashes that occurred. This is key to you getting the treatment you need, so don't allow the doctor's focus to wander off to another direction, particularly when they start to get confused about the amount of symptoms you will be experiencing. Lyme Disease sufferers always have loads of symptoms, which seems to confuse the medical profession. Keep bringing them back to the facts, ie you WERE bitten by ticks and that you DID have two bulls eye rashes. That'll get you the treatment you need. Take in a printed Pathway to Treatment which says that GPs should make a clinical diagnosis when the bulls eye rash and history of a tick bite is present. ASK for immediate treatment without the need for a test as the tests are notoriously unreliable and will result in you having to wait a number of weeks for a result.

      From my experience, the more informed and assertive I became (without being confrontational), the better quality care I received and the sooner I started to get well.

      All the best.

    • aromasammy
      aromasammy caroline91964

      Posted

      Hi Caroline

      I look back at my first appointment with the Doc on Monday and can understand now why he was so quick to jump to the assumption that I was crazy and he wanted me to have a psych evaluation with a shrink! Trying to explain the syptoms when a doc has not connected the dots when you have already explained that your worry was that there may be a connection to the now and the bites and rash previously. My probelm as well was talking in my own language but not in his. When I left the surgery I felt so humilated and offended and never wanted to set foot in the place again. After rationally thinking about it, I constructed a letter, to complain of his rude treatment of me, then attached some material I had printed off the internet, mentioned again about the rashes and included my spymptoms again in as plain English I could. That letter made him jump to attention and since Monday, I have been really well treated and he has been incredibly helpful and sympathetic.

      The hospital I know may be a differrnt matter. And now reading your post and those of the others I am feeling much more confident about pushing for what I beleive I need and it helps to be as informed as much as possible...in some ways it has become a bit of an obsession this weekend and I keep reminding myself that I may need to be to deal with tomorrow!

      I am glad you are on the mend as this is quite perplexing. The variety of symptoms are worrying and scary and are also annoying as they (or in my case) are sporadic and makes you feel like you are imagining things at times. But it is very real and I look forward to resolving this and hopefully moving forward and getting back on with my life and pain free.

      Thanks again for your encouragement smile

    • caroline91964
      caroline91964 aromasammy

      Posted

      I'm sure you'll get the antibiotic treatment you need. When you do, be aware that Doxycycline needs to be taken with a meal, otherwise you may get stomach ache. The doctor didn't tell me that and I found it out on the internet. Also, be prepared for something called a Herx reaction. This happens when the bacteria starts to be killed by the antibiotic and it releases toxins. Read up about it so you're prepared. 

      Many people become alarmed if they have a Herx reaction and the GP takes them off the antibiotics, as they think it may be an allergic reaction. You can help yourself by drinking plenty of water, taking Epsom Salt baths and detoxing. Also, eat pro-biotic yoghurt - this helps with the detoxing and also with your stomach and digestion when you're on the antibiotics.

      Another thing - Doxycycline can make you very sensitive to sunlight, so try not to go out in the sun whilst you're on the treatment or you may burn easily. My doctor didn't tell me that either.

      The internet can be a blessing and a curse when looking up information. So much info out there it can scare you. Try to find positive, informative web sites that are based on facts, rather than looking at the ones that can frighten you with very negative stories. 

      I suggest you look at your diet and recommended diets for Lyme Disease sufferers, it can help you. I cut out all sugars and kept carbs to a minimum, it really helped.

      If you feel well enough, try to walk a little every day to keep the blood circulating and the muscles working, that helps too.

      Stay positive and in control when conversing with the medical profession so they can't write you off as a neurotic, etc. At the same time, don't try to teach them their job. Try to guide them towards the conclusion you want by strongly focussing on the tick bites and the bulls eye rashes. They will then make a diagnosis on those facts which is the result you want.

      These are all things I learnt over the months I was ill and I hope they are of help to you.

    • aromasammy
      aromasammy caroline91964

      Posted

      Thank you so much Caroline for your great advice. Fingers crossed I don't get fobbed off tomorrow. 

      Thanks again smile

  • fat_fingers
    fat_fingers aromasammy

    Posted

    I had had all blood tests done prior to my appt with Lyme Specialist. I had kidney scans to exclude tumour , CT scan to exclude lymphoma and blood tests to confirm not myeloma. Basically all these tests were done to exclude malignancy because I was so poorly. Doctors can treat you on the clinical picture without you have + blood test. I am on oral antibiotics and plaquenil and fingers crossed I am picking up.

    it is very scarey and must be worse living abroad. Hope all goes well for you xx

    • aromasammy
      aromasammy fat_fingers

      Posted

      WOW, so many tests! That must have been very traumatic! How long were you suffering for before they did the tests and did your symptoms gradually get worse over time, before you were able to get treatment? I know everyone is different at the disease can progress at different rates in different people.

      I have just put up with mine for months, mainly as they were non specific and random and also I did have a fear about visiting the doctor here. On my few trips back to UK to see the family I intended to see a doctor there, but life got in the way and I wasn't too bad at the time.

      But over the last few months the variety of symtoms progessed, so much so I did pluck up the courage and go to the doctor (took myself off to A&E first)......

      Had I not had the rash and could explain every detail of it to the doctor, he would not have taken it seriously based on the symptoms....I feel sorry for those who are begging for treatment who didn't get the rash, as yes it is scary as each syptom could be the start of something other than just Lymes.

      Glad you are feeling better, let's hope you can beat it. All the best smile

  • aromasammy
    aromasammy

    Posted

    Hi Caroline and fat fingers...I am really frustrated now as it is going to look like I will not get treatment.

    I saw the specialist on Thursday in the end as there was a miscommunication at the hospital on the Monday, I was booked in for knee xrays. Saw the doc later that day, these confirm the start of arthritis and am discussing treatment with him next week. Blood work was all fine, he said although the test for Borrelia had not yet come back. Over the weekend I had more nerve problems in my hand and felt awful, glands in my neck were up again (they still are), so he said he was going to refer me to a neurologist. I arrived on Thursday up at the hospital and as soon as I walked in I was asked by two different members of staff what on earth I was doing there, and what made me think I needed to see the infections specialist..and why wasn't I seeing someone in orthopaedics! I was confused at all of this as they bombarded my translator friend with the insulting questions, refusing to talk to me in English. Eventually I was called in to see the doc, who refused a consultation, telling my freind that I didn't have Lymes and if I thought I did, I should go home and treat it myself! I was gobsmacked at the rudeness of this woman as she pottered about scribbling at prescriptions (carrying on with her other work while we sat there)...when I interjected and said I was not being a pai in the arse, but I had 2 bites and the rashes and been unwell..was my blood test back and which one did they do....again to my translator, she said my serology test was negative and I could go home. I argued that that test was known to be inconclusive at that the usual test was the Western Blot...she threw her arms up in the air at me and screamed in English...OK you will have more tests. I asked which and she said PCR and that was it, thrown out of her office and then the nurse took more blood. On leaving, she said to my freind that the 'ruddy doctor had sent her the hot potato' ..needless to say I am mortified at the disgusting apathy, arrogance and rudeness of the medical proffession here.

    I then went to another clinic and managed to get a print out of my blood results so that I could see them for myself......the serology test for Borrelia came back with a reading on 0.86 for me, but the positive is 0.90...I am 4 whatevers from the level, have no clue if this is significant and trying to make sense of it all.

    I got given a follow up appointment with the specialist for the 30th but I am dreading it, based on the last visit, if that test is negative as well I will have wasted the long drive and inconvenient place to get to to be insulted again.

    I have been reading a lot of stuff on the disease, treatment and tests and really feel at a loss as to what to next....if Serology and PCR are not reliable tests, then why do them and use that as rule of thumb? They won't give me a Western Blot test here.

    If the PCR test comes back as negative, do I cave in and agree that I don't have Lymes now?

    Can someone get Lymes and their own immune system tackle it by itself?

    I had the bites and 2 Em rashes 2 summers ago, was unwell a couple of weeks after, then was fine for a long time...now my current and random symptoms have been creeping up gradually in the last year....so in my mind, yes maybe my immune system was keeping it at bay, but with my neck glands permanenantly swollen and hurting and the other things happening more regulalry I feel I am going down hill quickly..trying to stay focused and positive that my body will fight off whatever is going on with it, as at this moment it has no choice but to do that as I am not getting any help.

    I am off to the Uk in April for 10 days to see my daughter, she has suggested I get an emergency appointment with her doctor while I am there, but I am not feeling optomistic with this idea, due to my short time in UK and the fact that this one will want blood work done too and won't diagnose on the bites and rashes alone either.....

    Any suggestions out there?

    • caroline91964
      caroline91964 aromasammy

      Posted

      Hi,

      So sorry you had such a bad experience. It's outrageous that you were shouted at and I can't imagine how frustrating it is to try and communicate with doctors who don't speak your language.

      My advice is to seek and emergency appointment with your daughter's surgery. You can register as a temporary patient if you are visiting her.

      Please do look at the Lyme Disease Action website and run off the Pathway to Treatment guide for patients and GPS. You will see that Public Health England recommend GPs make a clinical diagnosis, without the need for an ELISA blood test if you recall being bitten by ticks, have had the bulls eye rash reaction and the flu like symptoms.

      My mother-in-law was bitten and had a rash when she was staying with me. She couldn't recall seeing a tick but the bulls eye rash was very pronounced. However, when she returned home to Manchester, the rash had gone, but she was starting to feel very poorly. Her GP didn't wait to test her bloods as he made a diagnosis based on the fact that I had been confirmed with Lyme Disease, my mother in law had seen the rash and was obviously in pain and getting worse. He prescribed 28 days of Doxycycline as per the Public Health England guidelines.

      You should not have to rely on a blood test if you have seen the ticks and have had the rashes. I have read that it can take weeks or years for the symptoms to really start hitting you hard. You may have the onset of arthritus, but a good GP shouldn't allow themselves to be diverted away from the fact that you were bitten and had a rash two years ago.

      I agree with fatfingers - don't give up, most people with Lyme Disease have dealt with negative doctors, though I was never screamed at by my GP. Having said that, she started to get very impatient with me and suggested I might be depressed. However, once my ELISA test came back positive, she did apologise to me, which was a good thing.

      You can read up on it, but I don't believe the body can naturally fight Lyme Disease. I've read about flare ups, and how it can take years to really start causing problems, but I believe that the only way you can keep it in check or beat it is through prescribed antibiotic treatment.

      With regard to the medical profession, I can only pass on my experience. When you are met with a blank or dubious, remain calm and assertive. Stick to the facts so it forces them to make a diagnosis based on facts only. Don't mention arthritus as they will zero in on that. Tell them that you have always been fit and well until you were bitten and had the rashes. Keep talking about the bites, the rashes, the flu like symptoms you have experienced and it will help them to get to the root of the problem. Take in the notes from Public Health England, they can't argue with those guidelines.

      Good luck, I really hope you find a GP in the UK that has some knowledge of Lyme Disease, it really helps.

       

    • aromasammy
      aromasammy caroline91964

      Posted

      Thank you Caroline,

      I have doctors appt on Wednesday and if the second test comes back negative as well, I know that he is not even going to entertain the discussion from then on in.....in the last few days I have now been feeling dizzy (even when sitting down) ...I had a spate of this last summer when it was hot, so put it down to the heat (this week it is cool and wet, so I know its not a heat related thing). But if I tell him this, I know that he will go back to what he said on my fist appointment - a pscychiatric evaluation.

      Its horrid now as I feel like an idiot to mention these random symptoms..I am worrying before I even go.

      But I am not giving up! I know my body and I am not nuts. I know I got bitten, I know I had the rashes and I know that something is slowly going wrong. I can't help but feel it is connected, nothing else makes sense.

      I am going to extend my trip in the UK and do as my daughter suggests and see her doctor - at the very least that will do is to be able to chat about this and in English with someone who 'should' know about Lymes. She is in Scotland and I have read that the doctors there are more knowledgable about the disease and get better care, so fingers crossed, her doc will be one of those who will listen.

      One more question Caroline...I have been trying to decipher the Serology test......and its for antibodies to Borellia. If I have a high antibody reading (0.86) and the limit is 0.90 to be positive....does this mean that I do have antibodies in my system, that confirms that whether I have now, I at least did...would someone who had never been bitten have antibodies in their blood for Borellia? Is it a bateria that we all have? If you only have through a bite and someone who had not got bitten was tested would their antibody reading not be 0.00?

    • caroline91964
      caroline91964 aromasammy

      Posted

      Hi,

      Good news that your daughter's GP is in Scotland, I hope you get a good doctor who will treat you. As I suggested, don't confuse the issue by talking about serology tests or arthritus, but perhaps focus on the tick bites, the rashes and your symptoms. Look up info about how Lyme Disease can take months or years to emerge in some people, though a lyme literate doctor will know this.

      Sorry, I can't answer your queries about Borellia, that's something you'll need to research, or you could contact Lyme Disease Action who always replied to me within 48 hours with helpful advice.

      I understand how you feel about talking to the medical profession about your symptoms, many Lyme Disease sufferers have experienced negative experiences when seeking medical help. As I said, before my ELISA test came back positive, my GP was moving towards giving me anti-depressants and I remember one night being asked by a duty doctor if I'd been taking drugs or drinking, because he said it was impossible to have all the symptoms I'd been describing to him. He also asked if there was someone in the house who could verify what I was saying was true. My husband put him straight, but it did knock my confidence. 

      Take heart, all you need to do is find a doctor who will listen and you can move forward to a diagnosis. Having a GP who can speak English is the first step and the Scottish GPs are well aware of Lyme Disease and it's bizarre symptoms.

      If it's an option, you may want to consider staying in the UK until you have been diagnosed and you're being treated.

      Lyme Disease is such a weird illness. I sometimes wonder how many people have been misdiagnosed or dismissed as neurotic or depressed. If adults find it hard to get treated, children must suffer terribly as they can't articulate or push for help as we can. 

      Keep going, you will get there in the end. Your GP should at least take bloods and send them away to Public Health England for testing. This is the ELISA test. It's not entirely accurate as I'm sure you've found out via the internet, but the ideal outcome is for it to come back positive, (if you do have LD) because the GP will follow a definite treatment route.

      Good luck with the appointment on Weds.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.