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lyms are killing me head is pounding feel infected

Hi all i am 22 male I just thort I need to explain  how I am feeling as nothing is working for me. hope you read this and can help me or who is going through this what is it I have because its killing me off ! basically i have been getting some abnormal sensations going off in my body and i have felt like different like not here kind of thing. nothing seems right at all ! other people speech actions etc seem weird and that is kind of freaking me out. i have head aches constant with a horrific smell of burning in my nose to my brain and its not when i sniff up its like sense what comes and it triggers a major head ache strate after and it does not stop for hours . 2years ago i only suffered from mild head aches and i used to smell burning not often but used to get it so i had a MRI Brain scan which came back normal ok i got told it could be the classic stress and anxiety problem which i accepted. after months going bye it was not getting better what so ever even tho i stopped drinking at the weekends which could of coursed it and still had no better symptoms. so carried on and it all calmed down for 6 months or so and i was getting on with my life. then after the months had gone bye i started getting like pains in my alms legs which sent them numb and a dead pain where they kind of felt infected. again leaving the problem because the docs didn't find anything last time they have got a whole lot worse meening  i am in serve pain from head to tow and my muscles feel like there under attack the headaches pounding me and the smell of burnt rubber is hurting my head and nose feels blank. it gets worse at night like i am lieing down in my bed and i like hold my body and i feel like its the flu in my head and body shivers so bad and the pain is so bad. i slure my speech a lot of the time and its worse at night my head feels so heavy i can barley walk body feels chronic pain and so on ! . when some of the symtoms come on in the day which is every day now i get agitated and a storm of depression and anxiety comes on witch personality problems so all this is also leading to the mental side of me ! which is not me at all and other people are even recognising the impatience and the stress and cant sit still but its not me the symtoms are driving me to these outbursts! and my memory is terrible i cant remember what i did the night before and how i got to bed and what time i went to sleep so on ! i am forgetting how to do simple tasks and even reading simple words or spelling words this is worrying me if i am being honest. what can make u forget how to spell .. forget how to read slur speech constantly and get these head aches its something and its not anxiety i don't have a clue where to start are my lyms and body infected ? hurting so much its hard to describe properly they hurt that bad i can barley walk and i feel like so dumb from it ! right fore head a impact deep burning pain witch kills my head all day every day like a constant migraine that never leaves me. i get burning sensations in my eye and it makes it blurry for a hour or so which happens 2-3 times a day burning and tingle in my head and face constant and again that doesn't really leave me. some times in the evenings mostly i get like a abnormal shakiness in side my body which makes my jaw chatter and my my body for no reason what so ever kind of like i seizure is on coming or started ! i just don't no what to do because this is getting out of control  .. the symtoms are all these (smell burning) (head pounds burning right side) (memory loss) (lyms feel infected head to tow) hard to (hold my body up sometimes) (burning in eyes and face) etc all what i have posted in this story there is so many and its hard to stress it anough . if u can reply many thanks for reading this and any help would be massive thanks .
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1763947 tn?1334055319
We all have been where you are. Anxiety and depression can be from the Lyme or co-infection. We don't want you full of anxiety but take it from me, I wish I had this forum over 20 years ago when I was first bit, I was given an MRI and was told I had MS because of the lesions in my brain. The lesions were not MS but Bartoella lesions. A friend was told she had MS and spent 20 years in a wheelchair. She then heard about Lyme, went to an LLMD and is now walking.

Lyme is a very ugly disease. Its called the great pretender because it looks like so many other illnesses. I don't want anyone to go through what I did. Years of misdiagnoses and painful tests only to get so bad that I couldn't walk, had periods of muscle weakness and blindness. The brain fog is so frustrating but the good news is with treatment, all has improved.
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Avatar universal
I have not been diagnosed with lyme and not been offered any antibiotics because they don't believe it's a physical problem because tests was normal !   .. And 2 years back I had issues with my head and body etc i had a CT brain scan for any thing serious brain tumours strokes etc because I used to get similar symptoms after finding nothing a MRI on the brain also found nothing. Now they won't do any more because all the docs neurologist can not find anything. But I explained some of my symptoms a few weeks back and they have have me a EEG scan I've got to go for that in 4 weeks I think that's to find Any abnormalities on the brain . Will this pick up anything serious cus I'm totally confused I know there is a serious disease going on and no doc can see it I'm young witch these symptoms it don't add up. Like I was saying the server memoryloss muscle pains eyes dilate n blurry n forgetting how to read things or understand people I have read all your comments and I am thankfull but with the problem with my brain it's getting worse and worse I don't no what I am doing or saying anymore I feel like I'm going totally brain dead if that makes sence?  i am forgetting what words meen its unreal ... so eating healthy putting goodness in me all that kind of thing you have all posted may help ? And the lyme sounds about right for my symptoms ? But how can something do this having anxiety with it don't help because I'm thinking il end up the worse possible many thanks il keep checking .
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Avatar universal
"Too often, I have seen the word cured used in Lyme Disease Studies, only to find that the researchers have redefined the word cure to mean seronegative. Seronegativity is not synonymous with cure. The numerous culture positive cases in recent years should have negated that kind of logic years ago, and yet, in 1997, researchers are still publishing studies that use antibodies and PCR as the end point for cure. It's time to ask the patients one simple question: How are you feeling?"

From Tom Grier's The Complexities of Lyme Disease

And on the other hand-----if I were a patient who felt good after long tx and whose tests came back negative (even though we all know that the tests aren't that good) I would breathe a long grateful sigh of relief. And that remission might last them the rest of their entire life.

But it might not.
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1211030 tn?1381137342
since when is there a "cure' for lyme disease?  Remission is the best u can get
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Avatar universal
"No 1 has diagnosed me with Lyme disease"

Will that doctor prescribe antibiotics for you?

So you HAVE been diagnosed with Lyme and that doctor has ordered an electroencephalogram (EEG), right? Or did you mean an MRI? You also mentioned 'brain scan'-----maybe a "CT" (computerized tomography)?

I know that all this medical terminology is hard for a newcomer to understand at first---- just trying to get an idea what test you're being given.

Your symptoms could be all from Lyme. Most of us here have had them. Sometimes one by one, sometimes many at the same time.

Sadly, until you start antibiotics your symptoms won't go away, and often not all of them at once or quickly.

You're not brain damaged! You have neurological symptoms of Lyme disease and possibly from other tick borne diseases as well.
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1763947 tn?1334055319
Sorry, my iPad did some of its nasty tricks, I should have read what I was going to post before doing so....brain fog for sure.
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1763947 tn?1334055319
Hi there. You'll be happy to know you are not alone.

Yes, unfortunately it is very common to have the brain fog. Memory loss became my issue too. It does get better with treatment but for me, I have the Lyme co- infection called Bartonella and it gave me brain lesions. That caused more neurological issues.

I had periods of blindness and muscle weakness and couldn't open the fridge before. I was barely walking with a cane.

After 18 months of treatment, I have greatly improved but my brain issues are still there a bit. I had a friend that recovered I already have a subscription to allure and don't want another one. A friend recovered after 3 years. Some less time. It depends on your co-infections.

I see from the older posts that you were told to find an LLMD. Any luck there?
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Avatar universal
Don't ask why it keeps posting this same question comp ain't working right
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Avatar universal
Yea I've been to the doctors many of times I have a brain wave test coming up. No 1 has diagnosed me with Lyme disease I need help fast unless its something serious because this last 2 weeks I don't know what I am doing. Can Lyme disease do these things what I've listed above seriously because I can't carry on like this I feel as if my brain is failing on me. I am forgetting how to read write spell etc when somebody speeds to me I can't barley understand them. I can't remember how to do simple tasks my speech is sluring and I'm not stuttering . I get migraine head aches what can't be described in words and the Smelling burning is getting worse and worse my muscles are killing me I feel dizzy nothing makes sence to me at all. If somebody asked me to do something I don't no what I'm doing my pimples dilate my eyes are blurry ! I can't function what's so ever It feels like I am developing brain damage and when I researched lyme it all came up . Have any of you experienced this what I'm saying ? And will this go away because everyday it's getting worse my memory is failing on me I feel completely dumb the only thing positive I am recogniseing is acually knowing something is wrong, I feel seriously ill and no body can tell me why doctors won't do any more tests but the symptoms are multiplying day bye day and the symptoms are bazzare ! I know I've explained up top but will this permanently stay with me ? I'd it's not lyme then I am totally screwed because there's no other path I can go down. It's a battle to keep contact with reality and my ability to understand things I am confused ! How can I just forget how to read properly say words properly I often forget what words meen I can't even spell in serve pain every where . His can it effect my brain ? And will there defiantly be a full recovery I am not in my own town for 2 weeks so I can't get help even tho they won't help me anyway uh doing a brain scan will rule out tumours etc but I feel brain damaged from it my head is burning muscles burning eyes are everywhere where can I go !? But even somebody telling me something with in 2 minutes I don't know they even told me I'm 23 what is going off ?? I can't deal with this any more I can't think anymore ! Classic Lyme? Or should I give its where these symptoms make full sence tho ? If you no or experienced this please reply or even point me in the right directions thank u again .
Helpful - 0
Avatar universal
Yea I've been to the doctors many of times I have a brain wave test coming up. No 1 has diagnosed me with Lyme disease I need help fast unless its something serious because this last 2 weeks I don't know what I am doing. Can Lyme disease do these things what I've listed above seriously because I can't carry on like this I feel as if my brain is failing on me. I am forgetting how to read write spell etc when somebody speeds to me I can't barley understand them. I can't remember how to do simple tasks my speech is sluring and I'm not stuttering . I get migraine head aches what can't be described in words and the Smelling burning is getting worse and worse my muscles are killing me I feel dizzy nothing makes sence to me at all. If somebody asked me to do something I don't no what I'm doing my pimples dilate my eyes are blurry ! I can't function what's so ever It feels like I am developing brain damage and when I researched lyme it all came up . Have any of you experienced this what I'm saying ? And will this go away because everyday it's getting worse my memory is failing on me I feel completely dumb the only thing positive I am recogniseing is acually knowing something is wrong, I feel seriously ill and no body can tell me why doctors won't do any more tests but the symptoms are multiplying day bye day and the symptoms are bazzare ! I know I've explained up top but will this permanently stay with me ? I'd it's not lyme then I am totally screwed because there's no other path I can go down. It's a battle to keep contact with reality and my ability to understand things I am confused ! How can I just forget how to read properly say words properly I often forget what words meen I can't even spell in serve pain every where . His can it effect my brain ? And will there defiantly be a full recovery I am not in my own town for 2 weeks so I can't get help even tho they won't help me anyway uh doing a brain scan will rule out tumours etc but I feel brain damaged from it my head is burning muscles burning eyes are everywhere where can I go !? But even somebody telling me something with in 2 minutes I don't know they even told me I'm 23 what is going off ?? I can't deal with this any more I can't think anymore ! Classic Lyme? Or should I give its where these symptoms make full sence tho ? If you no or experienced this please reply or even point me in the right directions thank u again .
Helpful - 0
Avatar universal
Yea I've been to the doctors many of times I have a brain wave test coming up. No 1 has diagnosed me with Lyme disease I need help fast unless its something serious because this last 2 weeks I don't know what I am doing. Can Lyme disease do these things what I've listed above seriously because I can't carry on like this I feel as if my brain is failing on me. I am forgetting how to read write spell etc when somebody speeds to me I can't barley understand them. I can't remember how to do simple tasks my speech is sluring and I'm not stuttering . I get migraine head aches what can't be described in words and the Smelling burning is getting worse and worse my muscles are killing me I feel dizzy nothing makes sence to me at all. If somebody asked me to do something I don't no what I'm doing my pimples dilate my eyes are blurry ! I can't function what's so ever It feels like I am developing brain damage and when I researched lyme it all came up . Have any of you experienced this what I'm saying ? And will this go away because everyday it's getting worse my memory is failing on me I feel completely dumb the only thing positive I am recogniseing is acually knowing something is wrong, I feel seriously ill and no body can tell me why doctors won't do any more tests but the symptoms are multiplying day bye day and the symptoms are bazzare ! I know I've explained up top but will this permanently stay with me ? I'd it's not lyme then I am totally screwed because there's no other path I can go down. It's a battle to keep contact with reality and my ability to understand things I am confused ! How can I just forget how to read properly say words properly I often forget what words meen I can't even spell in serve pain every where . His can it effect my brain ? And will there defiantly be a full recovery I am not in my own town for 2 weeks so I can't get help even tho they won't help me anyway uh doing a brain scan will rule out tumours etc but I feel brain damaged from it my head is burning muscles burning eyes are everywhere where can I go !? But even somebody telling me something with in 2 minutes I don't know they even told me I'm 23 what is going off ?? I can't deal with this any more I can't think anymore ! Classic Lyme? Or should I give its where these symptoms make full sence tho ? If you no or experienced this please reply or even point me in the right directions thank u again .
Helpful - 0
Avatar universal
Amitryptilne is sometimes prescribed for people with mysterious nerve pain.  It is an old medication, a tricyclic antidepressant.  Over time, docs discovered that it seemed to ease the pain of some people with neuro pain and pain of autoimmune diseases.  

I was put on Nortriptyline, another tricyclic, to help me "sleep" by a neuro when I was hospitalized. It really did help me sleep, so I stayed on it. When I got it refilled, I read the info sheet and realized it was an antidepressant. I thought the neuro tricked me into taking it, calling it a sleep med when maybe she really thought I needed an antidepressant.  But then my GP explained how these meds affect the way the brain processes pain signals.  Then the neuro's decision to give me this med made more sense.  

I still think the neuro should have been honest with me about the drug, but it worked out okay. I finally weaned myself off it a few days ago after taking it for a year and a half.  I stayed on it so long as I was dealing with the depression that sometimes comes with Babesia.  I seem to be past it.  Well, at least so far.

If either of these two meds helps with pain, sleep, or depression, then that is a benefit as far as I'm concerned.

You might ask one of your docs (the most sympathetic one) if they'd be willing to send your blood off for tests at InfectoLab in Germany. They have really good Lyme antibody tests that look for the different species found in Europe.  

Did you ever get tested in the UK?  It just seems to me (total hearsay) that a lot of people with chronic lyme there test false negative.  It sounds like the species/strain they're using in their lab test kits just isn't useful there.
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Avatar universal
Neurologists are, unfortunately, not known for understanding Lyme disease, and it is easy for them to overlook it or to try to treat it with a few weeks of antibiotics (which is not enough, and often of a wrong kind, when you have been infected for more than a few weeks).  

You could ask the doc to test you for Lyme disease, and see what comes back.  The test(s) the doc would likely order are not great, but if you get something positive on even a lousy test, it will give you an idea of which direction to go from there.  If the test comes back negative, that doesn't necessarily mean you do not have Lyme, but having a positive test would be a good clue.

I looked up amitriptyline, and because it does not appear to be an antibiotic, it would have no effect against Lyme, which is a bacterial infection.  

Let us know how the appointment goes, and we might have some more ideas for you on what we would do next.  It took me 20 docs, one after the other, to finally get diagnosed with Lyme, because I had no idea that it could be Lyme.  So you're ahead of me on that point.

Hang on, keep us posted -- we'll look forward to hearing from you further --  
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Avatar universal
I have been on amitriptyline for 2 years**
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Avatar universal
yea ive been on medication I didn't medication amitriptyline for 2 years but they are ment to help muscles ect. but nothing is working and things are getting a whole lot worse.

I am going back to see a neurologist in a months time I just hope he can find something what is treatable and for the comments you put about blood tests ect they are giving me one in 2 weeks time I have been waiting 4 weeks already ! for inflamed muscles ? will that detect anything to do with a lyme problem ?. many thanks
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Avatar universal
I did take a 'peek' fairly recently to see what they're 'up to' :). I found that they're still giving mostly fair and balanced information as they did in the past.

Gill R. is still very much there as are several other people that I recognize from their long and continual participation in Lyme matters---- research, 'explaining' the research, advocacy. They're also welcoming to new and confused members also giving them basic information and support.

In case you don't know about another site, for UK people, you can search for LDA UK. It's not the same LDA as in the US. Very good site also and I go there often to see 'what's up'.

Plus a non-profit site (BADA UK). I don't think either of these has a forum but I won't give the link, just in case it's against MedHelps rules.

I can't recall the name of a woman (Wendy something?) who was very active in the UK in spite of being in a wheelchair and (perhaps) partially blind due to the ravages of Lyme. Anyone know? She and I had emailed back and forth for a while, but you know how people move on.

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Avatar universal
To be honest, I haven't been on Eurolyme for a long while. When I found the members here are much more knowledgeable, I stopped visiting there.
Forums are only a function of the most active current members, so they can change radically over time. So, upon reflection, it makes sense to go back and check what it looks like these days rather than just give up on it!
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Avatar universal
I think you're right----- EuroLyme used to be great--- not so much in recent years. But just as with most forums you have to sift through some of the 'nonsense' and get the kernels. :) I wonder if Gill R. is still in charge.
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Avatar universal
Personally I find this group much more helpful than Eurolyme. Just saying!
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Avatar universal
Ticks carry many diseases, often multiple diseases within one tick.  About half of Lyme patients have one of these "coinfections" which can make a person sicker.  Since they can complicate the presentation (collection of symptoms), it further discourages doctors from considering Lyme as they see symptoms they don't expect.

I encourage you to also ask for testing for these other tick borne diseases.  That may help in getting properly diagnosed and treated based on what you actually have, especially if you test false negative for Lyme.

The most common ones are Bartonella, Babesia, Anaplasmosis, Mycoplasma, and some other non tick borne illnesses that are opportunistic, causing illness in a Lyme patient who is immune suppressed.  These others include things like Toxoplasmosis, h. pylori, parasites, and others that contribute to overall feelings of sickness.

Youvegottobekidding has some great advice and suggestions.  Do everything in your power to help strengthen your body to fight off whatever you have while you look to find a doctor who can help you.  And definitely check out the European based Lyme support groups.  
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Avatar universal
Have you tried a group EuroLyme? You can find them by googling. It's free and it used to be (probably still is) a very good group for the UK .
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Avatar universal
Yes, antibiotics do cure lyme disease.
You are not going to live like this forever!! :)

....but... it is an antibiotic resistant bacteria that needs extremely aggressive treatment with a mix of several antibiotics, for a long time. (Same as treating tuberculosis or syphilis, for example). months or even years.

Unfortunately lyme disease was only discovered as a bacterial infection in the eighties and most doctors have extremely out of date knowledge of it - all the important research has taken place in the last 10 years and most of that in the last 3 - yet they insist they know it all!!!
Most bacterial infections can be cured with a couple of weeks of antibiotics and in the old days doctors assumed lyme bacteria were like that.

Some people with lyme don't get cured, unfortunately, because their doctors either don't prescribe antibiotics for long enough (you need months or even years) or they give them only one, and you need a mix of 2 or three.

If you cannot afford the doctors in Germany, who are the experts, your next best option is to print out the Ilads guidelines and convince your GP to follow them. They explain which antibiotics work, and which combos work.

I got sent to a whole bunch of specialists in the Uk and my employer even sent me to a series of Harley street specialists and they were all useless. I eventually realised, there ARE no specialists in lyme disease in the UK.
I suspect your best bet may be to work on your GP - but of course that has to be your call, you know what kind of person he is.

I know a woman who has done a lot of surveys of lyme treatment in the UK and she found it is like a lottery geting treatment, some patients had helpful GPs and others had GPs who practically said lyme disease doesn't exist and refused to prescribe them a blood test!!!

Sorry if I sound really negative, I just think it's better to be forewarned about this. I think the best thing you could do at this stage is read all over the ILADS website, which is where the new research is gathered, and especially the treatment guildelines.

Meanwhile you might get a bit of relief with some nutritional supplements.
The ones that help most of us are:
magnesium (take a type ending in ate, which are best absorbed in the gut, eg magnesium orotate or mag citrate etc) - this helps with the pain and with the neurological problems (like spelling probs and smelling burning) and anxiety. start on 400mg daily, you can go up to 900mg maximum and at that level you will definitely get improvements. take magnesium with meals but ideally not with a lot of dairy products as the calcium makes you absorb less magnesium.
Vitamin C, take a high dose, aim for 2000mg a day
probiotics - these give your immune system a huge boost, just as much as vitamin C. Again, you need to splash out on good quality (which means lots of different bacteria types not just 2 or 3) and take a very high dose, between meals.
A good multi-vitamin and mineral supplement - everyone with lyme disease needs more nutrients than you can get even from a very healthy diet, as lyme bacteria steal many nutrients from you and use them themselves. (most bacteria just live off sugars but lyme likes a complex diet!!)

Also, the golden rules of lyme disease are no caffeine and no booze.
Personally I cannot live without a cup of PG tips at breakfast but I just drink decaf tea for the rest of the day. No coffee, Coke or chocolate.
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Avatar universal
wow thanks for the quick answers I have taken in what you have told me. I will keep in contact hopefully I can explain that this is the problem and he can send me to a specialist. But I am glad u can recognise the problem and have heard of the smelling burning and reading proplems pain ect so will a antibiotics get rid of this thing what is making my life a struggle thanks a lot for your reply.
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Avatar universal
I've just looked at your profile and seen you're in Nottingham.
Here's what you should do.

Go to your GP and ask for a lyme disease test called a Western Blot.The one you get on the NHS is often wrong (false negative) but it's free so worth trying.
If it's positive, print out the "ilads treatment guidelines" from the ILADS website adn take them to the GP and ask him to follow those guidelines in prescribing antibiotics for you.
It depends how intelligent your doctor is whether he'll follow this, or just use the NHS guidelines that say you can get cured with a month of a single antibiotic, which is completely untrue.

If you get nowhere you should consider registering with another GP to see if you get any better results.

The only private hospital the treats lyme in the UK is called The Breakspear but it is expensive and every single patient I know online who'se been there ended up hating the place as they didn't get cured.

Uk patients usually go to a clinic in Germany called the BCA which is also dead expensive but at least the doctors there are really good. There is also a doctor in Austria who is less booked up with patients and so you might gt seen sooner with her. (The Germans have at least a 6 month waiting list last time I heard)

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