I think I have lyme disease. Anyone awake?

Infections
1

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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Parents were horrified at the amount of time taken off work*

Sorry, there's so many mistakes in what I've written. Feeling panicked.

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Were you tested for lupus and a general autoimmune panel? Is it possible the rash is an allergic reaction to a med you're on?

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Hey, thanks for replying.

Haven't been tested officially for autoimmune as other blood tests have indicated normal WBC count, apparently making lupus unlikely.

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And I'm currently on no meds.

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WBC count would be connected to infection (or in some cases an allergy). The sed rate and ANA would be the lupus markers.

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According to my GP WBC count would be lowered in lupus. I do need to investigate the ANA.

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.

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Apparently lyme can cause facial rashes. Well, so I've read anyway. Along with loads of skin problems.

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I'm really sorry you're feeling terrible. Your best bet would be to find a Lyme literate doctor, LLMD. They know what to look for and understand the combinations of symptoms with blood tests better than your average doctor.

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.

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Thanks for your in depth response.

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.

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I live in the US and even though they're are tons of people here with Lyme, it is also still debated. Some doctors don't believe in chronic Lyme, others think you need only three weeks worth of antibiotics, others think it only exists in the northeastern part of the country. It's ridiculous especially when you hear stories from patients who had to suffer for years because doctors didn't believe them and refused to treat them. Plus there are a bunch of politics involved with the insurance companies not wanting to pay for treatment and doctors losing their licenses because they actually did treat their patients with Lyme. It's sad and frustrating all around.

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.

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I have been experiencing the same symptoms as you for 7 years. First they said I had anxiety then after 3 years said I was hyperthyroid. Now been on anti thyroid meds for 4 years and still feel awful but meds help slightly. I got tested for lyme in USA which was cdc positive on 7 bands IGM, but negative on IGG as only 4 bands positive. Regardless UK refused to accept result and the UK test was negative.

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.

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Hi,

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!

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Hiya. Yeah my my face is pretty flushed. I have a rash too. I do get stomach pains buy they are very rarely extreme. And yes I definitely do experience bouts of almost-normalness. I'm really frightening this isn't going to be treated properly.

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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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You need to rule out hyperthyroidism first and perhaps check there isn't an adrenal problem by checking metenephrines. Another thing that can cause allergies and flushing are methylhistamine problems. Of course it's difficult to say but if you have the typical red across nose and cheeks then lupus would be more likely. Antibodies seem to go nuts once you have had an allergic reaction.

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

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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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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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Where did you get tested. My test came out negative in UK and they wouldn't accept my USA results.

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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?