I think I have lyme disease. Anyone awake?

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Hi. I'm currently at a loss for what to do and am pretty terrified right now. My name is Beth, I'm 19 years old and have been ill for the past 7 weeks. Doctors have been unable to explain it and started off by giving me antibiotics for a kidney infection I thought I had. Something strange happened whilst on these antibiotics. I reacted to every single one of them. Bar one. Amoxicillin. I initially felt miraculously better after taking this... of course this only lasted a day, and I started herxing (I believe that's the term?) which brought on a whole mess of neurological symptoms, all of which were attributed to an allergic reaction to the things. I was asked to come off them because they could see no signs of a kidney infection, I was in disbelief. Why did I still feel wrong? Was diagnosed with hyperventilation syndrome as an explanation for the neuro symptoms and was sent away.

Two days later, I was hit with several fatigue, a pain in my right hand, lower abdomen and head. I thought I'd contracted the flu because I was so run down. Hypervigilant as ever, I galloped to the doctors. I looked fine, glands were swollen though so they suspected perhaps glandular fever. Blood's were taken. Came back fine, slight inflammation, so was told to, effectively, get over it. That I'd been to the doctors so many times it was likely anxiety.

Tried to deal with that diagnosis, was experiencing stabbing pains in joints and muscles randomly. Was then woken by extreme vertigo in the middle of the night. Continued to experience weird seizurey type episodes, usually at nighttime, with tremors, muscle spasms and strange sensations. Parents were completely discarded at the night I'd take off work, unable to see what was going on.

I've since been referred to a general specialist (contradiction I know) who happens to officially specialise in infectious diseases. That won't be til next Tuesday. After wondering for a while now if I had lupus (sun sensitivity, rash on face) I happened across lyme disease. Kinda saw the similarities and have spent the last few hours cross referencing the events of the last few weeks with the progression of lyme disease.

Currently I'm sitting on the floor of my room, experiencing heart palpations, chest discomfort, tingly extremities, burning face etc. Looking to book an emergency appointment with a gp tomorrow in light of my recent discovery. Considering also whether it'd be helpful to cut out the middle man and go to a and e tomorrow morning, as I'm not sure what stage of the disease I'm at and I know a and e are often able to deal with these things in a more timely fashion.

My questions to you: is it normal for lyme disease sufferers to have a facial rash aggravated by sunlight?

I'm terrified of the prospect of herxing again, particularly when my symptoms are already terrible. Do I wait to see the specialist or book a Gp appointment for tomorrow?

I'm not sure whether this has been lying dormant or not, so as I say, I'm unsure what stage I'm in. Terrified. What's going to happen?

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  • Posted

    Hi, sorry you're feeling bad at the moment. I would say heat/sun sensitivity is 'normal' for lyme sufferers. I have lyme (confirmed by blood test) and get extremely flushed and overheated, usually early morning and late in the evening. Also bright light is very painful on the eyes, especially first thing/last thing. 
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  • Posted

    cheetahjade is so right - Lyme is a "rule out everything else" illness in many ways. I had classic Lyme in 1985 at age 29, too sick to even go to the doctor and in the U.S. house calls are almost unheard-of, but he did come and I was quickly diagnosed and treated. However I was very UNDER-treated (7 days of doxy with the first 2 pills not staying down) so though I got better fast, within a few months I began to get disabling, mysterious symptoms. Lyme is known as the "Great Imitator" because it affects so many parts of the body. Lord knows I was tested for everything under the sun including diseases that probably don't exist. Fifteen years later I found my old records, showed them to my current doctor and he agreed that I was never properly treated, so he put me on 3 weeks IV and 18 months of doxy. After that I was able to get in to a LLMD and treated for about 2 years. Unbelievable results. I won't be like my docs and tell you "it must be lupus because you have that typical rash" but I would make sure it was ruled out, not that you can't have two or more things going on...no law against that, unfortunately. Good luck, I've been there...keep us posted.
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  • Posted

    hello,

    first of all..don't panicsmile i know this is may sound very silly, as it is exactly what i did when i realised what was going on me last summer. it has now been a year since i was bitten for a second time, and i have now fully recovered. i was treated partly under NHS. The key to get treatment under NHS, or to be taken somewhat seriously, is to tell the doctor that you DO recall being bitten -whether or not you do, just make it up and do tell the doctor you recall the bite. read up on early symptoms, so you can back up your claim. remember this goes on your file and may be needed later. As i am writing this I am hoping my post is not going to get deleted by this site!

    I still had the EM bullseye rash at the time of one of my many visits to the doc (he first diagnosed it as skin thrush..), so that helped to finally get treatment. The rashes can come and go until you get treated. My first episode was when i was 19, like yourself. On and off, symptoms (nausea, faintness, weakness, stomach ibs like symptoms, episodes of paraysis in the spine) came and went and i thought this was just an annoying part of growing up..Last summer i got bitten again (i am now in my 30s), and it hit me really hard. Lots of physical things like numbness, weakness,joint pain, weird headache, beeping in the ears, tingly fingers and feet, plus the gigantic circular rash on the thigh, but also terrible anxiety and seeing things which were not real. It felt like something was boiling inside the head. Horrible, and very scary.

     I was given three weeks antibiotics (co-amoxiclav which is part amoxicillin), and i added two weeks to the course myself (doxicilin bought as an antimalaria drug  they are the same tablets) to make sure i had covered the lifespan cycle of the disease. you can get the antibiotics on the net from any british pharmacies, but i am not allowed to post the trusted website here. make sure you go for a mainline pharmacy, as there are fake medicines out there and you need to be careful. safe dose for women is not as high as for men (generally, as it goes by bodyweight). 

    This pretty much wiped out my summer with symptoms such as those you described, and it was not until Christmas that i started to have days when i felt completely normal. Now, the only remaining symptom is floaters in the eye - a minor annoyance at the most! Thoughout it all, i lived a normal life, though. I still saw my friends and informed them i could not get out on longs walks or shopping trips, otherwise everything was the same. I drove or took taxi a lot more as i would get tired very fast, after a few hundred metres of walking. But otherwise life continued as nomal. Be open about Lyme, and factual. People needs to know about this treatable condition.

    I feel it is important that people do not spell doom and gloom to young girls such as yourself - this is a conditon which is treatable in one way or another, just remember that. You may not feel 100% yourself for a while, but if is Lyme you WILL feel etter after treatment! The key is a positive attitude. You can overcome this.

    I wish you all the best in your recovery.

     

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    • Posted

      This is reassuring! My symptoms are getting worse though, and my concern is that I don't actually remember being bitten. There has been a mark on my back for some time which could have been there for a couple of years, but as I say I only started experiencing symptoms 7 weeks ago after a course of antibiotics for a kidney infection. Honestly I feel I have almost 50 symptoms! I hope the specialist will be able to recognise what's going on without having to wait around for tests...

      What's been the general consensus with managing a herx?

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    • Posted

      There is a good number of people who either don't remember being bitten or never saw a rash or mark. i don't recall ever being bit by a tick. What I do remember is a "spider bite" on my hand. Never saw the spider or any insect for that matter. I may be wrong about the numbers but I think only 50% of people actually get the bulls-eye rash that is associated with Lyme. 

      A long list of symptoms that goes across different systems. If you find a lyme site, a good one, there is usually a list of symptoms that is quite extensive, 

      Detoxing is important when fighting Lyme. People recommend anything from mustard baths, milk thistle, activated charcoal, exercise, or even alka seltzer gold to help with herxing. It's about finding what works for you.

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    • Posted

      You may just be reacting to any of these. I looked them up and they can have some bad side effects. Sensitivity to sunlight can be triggered by antibiotics.

      apart from lyme, you should get your thyroid levels checked as well as your autoimmune. It could be lupus. My step daughter developed lupus after suffering from anaphylactic from penicillin.

      drug reactions can cause the body to go nuts. For me it's 7 years and it's still going nuts. I am allergic to everything now. It's been getting worse over the years. I can't go out without a mask as I'm allergic to perfumes etc.

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    • Posted

      Nitrofurantoin was the first one. That can trigger lupus or cause a lupus like reaction, from what I've read. Everything has just developed so quickly.

      My list of symptoms is extensive, like literally 50 symptoms. The lyme diagnosis more accurately fits the symptoms, but lupus can cause a whole lot of problems too. Everything just becomes more complicated when they're both so hard to test for. I definitely reacted to the nitrofurantoin, like a stabbing sensation all over, then I got a rash (or at least noticed one). That reaction calmed down after a couple of days, then I had the trimethoprim which gave me Nausea and blocked one of my ears. After that, Amoxicillin which made me feel better for a day then I developed the weird neck headache thing (herx?). Then because I was still experiencing kidney pain, was given co-amoxiclav which was really strong and it felt like my nervous system was going crazy.

      I felt better when I stopped but then, two days later I got incredibly fatigued out of nowhere, with pains in my hand, head and lower back. Felt like the flu! I mean, what's the likelihood of this being lyme, and all the reactions to the antibiotics were herxs? It's a bit of a mystery, we do live near a field with deer and I've seen them on my cats before... But like I've said I only realised something was off when I started reacting to the antibiotics. And surely the steroids for lupus would make a lyme patient worse?

      The rash isn't across my nose, but it's on my cheeks.

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    • Posted

      Hi jeanette, I got tested in uk under NHS. long story...GP didnt spot the characteristic rash as being Lyme, so when i finally had gotten so bad that i phoned NHS direct about it, they told me to rush to the A&E and there was a pharmacutical staff meeting me there with 3 weeks antibiotics. when i thenent for my bloods three days later, i was told it was most certainly going to be a negative to Lyme as antibiotics was 3 days in already.

      I then went private in Harley Street to see Dr Mike Brown. Basically same story there about any testing - that it would be a neg from now on.

      Dr Brown was brilliant and told me to return if there was no improvemnt in few weeks, and we would look at other antibiotics/IV. But over the next months it gradually resolved itself, and there ha been no need for returning. He told me to expect it to take up to a year for symptoms to go away.

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    • Posted

      Hopefully a doctor will be able to give you some answers. My experience has been from steroid and cipro. I got red streaks on my thighs, palpitations, anxiety, electric shocks in brain, blocked ears, light flashing in eyes, feeling hot or very cold, weight loss/gain, tremor, bone and muscle pain, gastric pain and weird test results. Low iron/ferritin/vitamin D/TSH. High coproporphyrins, high risk ovarian tumour markers, high ESR, positive mycotoxins. Still not sure if it's lyme and doctors dont know. I did first lyme test in USA which was positive, next in UK negative and yesterday France negative but the 2 specific lyme antigens p39 and p 41 had results. France says over 5 is positive mine was 4.7 so do I or don't I have lyme. It's a difficult one to diagnose.
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    • Posted

      I just remembered you saying you were allergic to everything. Don't suppose you've looked into the possibility of a yeast infection?

      You're right, allergies generally do precipice autoimmunity. I got my and checked out and my rheumatoid factors, all clear. Though I do think I have candida. I'm allergic to everything now it seems! There is strangely no inflammation in my body either. Doctor's have diagnosed me with Post-viral fatigue. Funny, I never had a viral infection.

      Anyway, I've booked an appointment with a homeopath to try and get myself sorted. I hope you get your diagnosis. If you do think it's lyme could you not start a herbal protocol? You can self-administrate and it's very unlikely the herbs would cause you any harm if it doesn't turn out to be lyme.

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    • Posted

      Are you allergic to just medicines. Mine are smells too like perfume, cleaning products and mould. Last week I had to rush to ER as body temp went to 35 degrees and i was freezing, bp 185/106 and i was in agony and shaking. Turns out someone in my building is using insence and it's leaking under the door and through the air conditioning vents.

      Unfortunately I live in the Middle east and strong arabic perfume is everywhere so i am almost housebound. I can tolerate going out for a short while but I have to wear a heavy duty mask, even in the open air if there are heavy scents about. Life is miserable.

      I have had all the autoimmune tests done and they are normal. My adrenals aren't working properly but I don't have candida. I have had MRI's done everywhere and all that shows up is a couple of white spots on my brain, multiple cysts in liver, kidneys, ovaries, breasts and nodules on thyroid. Blood tests show low level vasculitis, occasional very high coproporphyrin count, maximum normal chromagranin, slightly raised ESR and WBC. Just waiting for metenephrines result and will get tested again for hereditary coproporphyria.

      I did see a nutritional doctor who gave me natural adrenal support supplement. After a tiny amount my adrenals went mad and i became so ill I couldn't walk.

      doctor said she doesn't believe it's lyme but says it's an old borrelia infection my body has dealt with already. She is willing to try my on 1 week antibiotics but I don't know if I'm allergic to them as I have never taken doxyciclin before.

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  • Posted

    All this information is appreciated, but so difficult to take in and make any decisions from when there are so many things going on in my body 24/7. As I say I have an appointment with an Infectious Diseases specialist on Tuesday but have been warned it's unlikely I'll get any treatment right off the back of that. It's been 7 weeks and I can feel myself slipping away, unable to make the decisions I need to. It would help of course if I had supportive family members, but my Mum thinks I'm a hypochondriac!

    Even if I do get treatment, I don't know if I could stand a herx when I already feel so bad.

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    • Posted

      I recognise that feeling of "slipping away." Hang on in there. You have your appointment on Tuesday. Don't fear the Herx reaction either. Ok, so it's no pleasant but it won't kill you and just imagine you have an army inside you killing off the bacterial invaders! It won't last too long. I went through it and came out the other side.

      Good luck with your appointment. First step has got to be a Lyme Disease test. It's not a reliable test, but if you're tested positive then you're on the path to treatment.

      You are not alone. Keep us updated here on this forum.

       

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    • Posted

      Also, you can look up on the internet ways to cope with a Herx reaction, there are many. Sleep, drinking plenty of water, Epsom Salts baths for detoxing are among a few strategies you could use.
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    • Posted

      Thanks Caroline, this is a great forum.

      I've read herxs can be life threatening if you don't adequately help your body 'detox'. It's just so much to think about without the aid of a health care professional - if they have to test for Lyme, surely that means waiting more?

      Sorry if this seems confused, I'm not thinking clearly. Thank you for your support, though.

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    • Posted

      hi beth, the nh DOES need to treat you if you have any of the following:

      - a memory of tick bite

      - a EMrash

      -having been exposed to tick prone areas (have you been walking through woodland, been anywhere deers may go, been to wetands, been anywhere foxes and pets go such as urban parks)

      If you are concerned about them not theating you, you can bring along Health England's memo on Lyme disease, you can find this online and print it out.

      I'd say that what you are experiencing is the famous Herx. You need to ride it out, and any additional antibiotics is probably not going to help. You also need to allow for your body to do something. i think it is important if you ever need a high dose like this again. it is powerful drugs not to be taken lightly.

       

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