HI, I wanted to know if anyone had major brain swelling near their temples beofre from the Lyme? My head is tender and i can literally feel my brain popping out! Every time i fel this new pulling sensation, my brain swell in a new area. With this comes a hige fever, my whole scalp is moist from the exces fever. I have a slight migraine and attacks of the swelling/worsening of the swelling every 5-7 hours. Then I lose orientation, cannot use my right hand at all[right handed], lose balance, feel like I will fall into a coma. I am real worried. I have had this for 2 weeks now worsening. I don't have an LLMD near home and I hate hopspitals..what could they do to help? In Canada Lyme is denied period. Maybe I would get corticosteroids to relieve swelling, but this compresses the immune system. I take an aspirin to relieve some of the swellin but it is not that succesful. I am very frightened by this. I was off all abx for over 2-3 months now......I started ketek , I have anrx for it for one month[old rx] a few days ago. It slightly eases the attacks, but they are still not subsiding. Is this lyme meningitis? and is thisn deadly> What should i do? thanks
Posted by char (Member # 8315) on :
Hi, This sounds not good.
You really have got to get seen by a lyme dr.
Can you post on the seeking a doctor section here to find the nearest dr. for you?
If you do have lyme, it gets worse over time, so it is important to deal with it.
I also think you should get a hold of your current doctor.
I am sure others will come along that know more about the menengitis issues.
Are you finished with school for the semester?
Char
Posted by citruslyme (Member # 7851) on :
HI Char, the swellin is worsening and I feel real siikc. around ten pm it will climax to full disorientation. The PRob is i am from Canada-- here there are no LLMDS near home and they don't acknowledge them Positive test results from thr US. Having said that, going to the ER wil not help as they won't give me IV..I think I may need IV at this point. real scared
Posted by proud pup (Member # 4152) on :
Hi,
Our local hospital is bad for understanding lyme also.But, I have taken my husband there many times (knowing that it had to do with his lyme) because he to has gone into "coma" states.
It is very scary. But, when he is really bad I take no chances and take him to ER. ( we have great ins.) They atleast do blood work, give him fluids(which does help) CT scans. Every time he has gone they have found nothing wrong. SO, we are relieved (if you can be) to know it is just his lyme.
If you have a "feeling" that you need to be seen by a doctor, please go to the hospital.
Atleast your symptoms will be then on paper so if they cannot find anything wrong you have that much more of a case to prove it is Lyme.
Husband has had I believe just about everything ruled out, so now it is a little better with his PCP believing his Postitve lyme test from IGeneX
Posted by char (Member # 8315) on :
Forgive if this should be obvious...
What exactly do you mean when you say you need an IV? to help reduce the swelling?
or for lyme treatment?
Char
Posted by diana (Member # 7466) on :
Try posting on canlyme-maybe someone can help you find a doc close to home. Where abouts are you located?
Diana
Posted by citruslyme (Member # 7851) on :
dunno if i need IV or not, but if the borrelai actually entered my brain then iv is usally a desirable choice to kick it off asap/ to relieve swelling, only corticosteroids do that. it's 11pm and it is really agrevating right now...freaky. my lLMD will phone me tomorro.w if only distance wouldn't be such an issue. Has anyone had this type of tenderness in their heads and a headahce and feeling of swelling and fevers geenrating from the head? Is this the form of lyme meningitis?
Posted by mag (Member # 8920) on :
hi citrus
i had the temple sensation for several months my neurologist calls it bitemporal pressure felt like -if i put a straw on each temple i could drain my head.
apparently lyme victims can have an increased pressure in the brain- related to irritation of the meninges - a spinal tap may show an increase in your csf pressure (greater than 20 mmhg) - - even though the docs ignore it
are you taking anything for the neurotoxins even if you will do the abx - you still need to get rid of the neurotoxin -
with all the herbs - i have taken - this sensation has subsided get to a good llmd and look for some alternative detoxing
mags
Posted by citruslyme (Member # 7851) on :
Hi mag, what herbs have you taken to help with this? I am calling my LLMD tomorrow. what abx helped u with this? thanx
Posted by Michelle M (Member # 7200) on :
Hi Citrus. So feeling for you. BEEN there, a LOT! See if a scrip for Diamox will help; it relieves intercranial pressure for some people (not instant-same day relief but in a bit of time).
I'd be thinking of getting on a serious blood-brain crosser antibiotic soon. Even amoxicillin at 3000 mg a day (plus probenecid) will do the trick and isn't terribly expensive or controversial; will herx the heck out of you but will cross blood/brain barrier where there is infection. (I personally would prefer IV but as usual, that's likely harder to get.)
You're correct that the ER probably wouldn't do much for you. And correct to refuse steroids. The best thing they might do is rule out temporal arteritis if you are at the point of your scalp/temples actually hurting you.
Maybe your doc can call you in a scrip for Relpax (a migraine med), which will ease a little of the pain in your head till abx can kick in and kill some bacteria.
Dunno if you have tested for babesia but it's famous for head pain like you describe.
Good luck, Citrus. This too will pass!
Michelle
Posted by mag (Member # 8920) on :
hi citrus
i followed dr k protocol cilantro before eating and chlorella after 30 minutes
the herbs i used (work like abx) were grapefruit seed extract, sea salt, (cats claw toa free)samento,and fresh garlic
lots of water , keifer to supplement lost lots of weight and had no appetite
did not have abx because---- none of the docs diagnosed me (finally found an llmd in april and tested igenex was positve for borrelia) so now i have bleeding problems from babesia, joint mice in the knee and i am with out brain fog but still wacky
i am able to find my way home - read a sentence and get up in the morning
hope you get answers from the llmd and keep on goin mags