I think I have lyme disease. Anyone awake?
Posted , 8 users are following.
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?
0 likes, 41 replies
beefany
Posted
Sorry, there's so many mistakes in what I've written. Feeling panicked.
LaurieEyeBee beefany
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beefany LaurieEyeBee
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Haven't been tested officially for autoimmune as other blood tests have indicated normal WBC count, apparently making lupus unlikely.
beefany LaurieEyeBee
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LaurieEyeBee beefany
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beefany LaurieEyeBee
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I have basically all the symptoms of lyme, even reacting to a penicillin based antibiotic which is used to treat early stages of lyme. I'm pretty terrified right now, especially with this rash on my face which confuses matters.
beefany
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cheetahjade beefany
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The problem with Lyme is that it can manifest differently in different people. But just because you look okay and your blood tests come out normal, doesn't necessarily mean you don't have Lyme. I think it's possible. But one of the ways to diagnose Lyme is to rule out everything else. So you'll probably still get tested for multiple things like Lupus and rheumatoid arthritis.
There are specific labs that test for Lyme. You just have to have a medical professional draw your blood and you can send it to them. But they can be pricey.
Basically there is going to be more testing in your future regardless. If you suspect Lyme, then find someone familiar and well versed with it. Until then, just keep track of your symptoms. Whether you have Lyme or not, it'll help to see if there's a pattern or if your reacting to anything. Good luck and I hope this helps.
beefany cheetahjade
Posted
Luckily I live in England so I'll go through the NHS. I hear there's debate over the chronicity of lyme disease, whether it exists or not. That doesn't sound too promising if doctors can't even accurately acknowledge the exist of the disease! Perhaps there have been changes in recent times but the articles I've read haven't been too hopeful.
Anyway, thanks again.
cheetahjade beefany
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I'm not familiar with the UK ones, but it might be good for you to find some support groups for Lyme. They could probably recommend some doctors for you. They're is a online forum at Healing Well that has a bunch of information that could help. I know some members are from Europe, so maybe they could have some suggestions for you. Just type in healing well and Lyme and you should be able to find it.
jeanette25032 beefany
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They need to test you to rule out a few things. Do you get bad stomach pain? If you run a nail along your skin does it mark? Are you getting flushing of the face? Do you feel ok sometimes and then get intermittant bouts of worse symptoms?
I have had most tests going with some pretty weird results but no diagnosis apart from thyroid.
beefany jeanette25032
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jeanette25032 beefany
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My illness started with allergist reactions to antibiotics and then anaphylactoid from a steroid injection. 7 years later and docs still don't understand what's wrong. This illness scares the hell out if me most days it'slike my body has gone nuts. I am now so allergic to perfumes and pesticides that i can't leave the house without a mask. I can't go to malls and life is difficult.
i tries eating garlic as it'smeant to kill lyme but within a wweek I was covered in boils and got really bad symptoms so istopped
beefany jeanette25032
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Someone I've been speaking to has just suggested hyperthyroidism. You say this happens after an allergic reaction? Have you ever been to a naturopath? If so, any luck?
caroline91964 beefany
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Sorry to hear that you're suffering and yes, it's very scary not to know what's happening to you. If you suspect Lyme Disease, I suggest that you try and find a doctor who has had experience in dealing with it. There doesn't seem to be a unified response to Lyme Disease in the UK. Last summer, I was bitten by a tick in the garden and had a bullseye type rash on my knee. Despite the fact I was presenting with all the classic symptoms of Lyme Disease, my local surgery didn't diagnose it for 3 months and gave me a 28 day course of Doxycycline antibiotics. My mother in law, who was staying with us at the time also got bitten and her GP in Manchester was much more open minded. He immediately put her on antibiotics and told her he would continue antibiotic treatment until she was well again. He'd recently been on a tropical diseases course, so was more educated about Lyme Disease.
In the meantime, I suggest you find out as much as you can about LD. You can also try looking at the Lyme Disease Action website, which is a recognised source of information and who I found absolutely invaluable when I was ill. http://www.lymediseaseaction.org.uk
Good luck!