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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 .
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.
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.
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 .
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.
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.
Personally I find this group much more helpful than Eurolyme. Just saying!
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.
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!
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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