Has anyone had these symptoms

I was diagnosed with lyme disease back in Oct. of 2011. i woke up one day with what looked like a bullet wound directly on the center of my spine and shoulders. about a month later is when i started with the headaches and facial numbness. i finally went to the doctor when i woke up one morning and my left eye was swollen shut. he was convinced i was suffering from suicide headaches and wouldnt listen to my other symptoms. One night my speech started slurring and i had uncontrollable shaking and kept passing out. so my husband took me to the E.R. and luckily for me the head E.R. doctors wife had suffered from lyme and he tested me. After i found out i had it and was given just 10 days of antibiotic with no improvement, i kept begging my doctor(crying) that he help me out.He finally listened and tested me for chronic lyme . when my test results came in all the did was call me and told me i didnt have ENOUGH "bars" to be cdc reportable. I was so upset at that time that i stopped going to a doctor because no one would listen to me. i have had facial tingling and headaches ever since. Now 2 years later i have been getting hit hard with headaches and numbness especially in the evening. Its weird because i can hear fluid moving in my head, every light and noise makes me want to scream. i wake up in the middle of the night in what feels like slight seizures. i just want to cry all the time. lately i have been loosing control of my right hand and right leg, they just start shaking uncontrollably. The worst is that in the past week if been plagued with random nosebleeds and blood in my mouth. i live smack dab in the center of Kansas and i cant seem to find anyone to help me. i guess what im saying is im desperate and wonder if there is anyone else out the that has what i have.

Hi there. I get the feeling of water being poured in my brain, I also can smell , like burnt toast or ammonia. I have face tingling, random body movements, headaches , seizures, you name it.

I don't listen to many of the doctors, if you have Lyme symptoms, I would believe you have chronic lyme.

I never had the nosebleeds, but I only tested positive for one active band, band 23. The doctors told me I cured myself, and a week later I was on a cane.

I have horrible weakness in my legs, and hands. You need to see a Lyme doctor. You also need to be detoxing your body, when I detox, my symptoms are better, also the pain lessons up somewhat.

Good luck to you , if you start a thread asking for a Lyme doctor in your area, someone will email you the information you need.

justme

Marie, that is the exact same noise i hear in my head, you described it perfectly. the sound of it makes me sick to my stomach. i am so glad i found this site. i've been reading through alot of the other forums and finding alot of people feel like me. i have never heard of detoxing but im going to start tonight. i'm tired of feeling like i'm dying. My mother has mental health issues. so when i first described my symptoms to my doctor he asked me to consult with a mental health worker. i was so mad because i know that's not the problem. i just want my body back.

the sound scares me sometimes, really - but I'm still alive after all those years, so I think it's not fatal... lol
You're the first person I ever talked to who has this!!!! yay!!! lol

the first months that I was on abx, I didn't know anything about detoxing, luckely I found this forum. I started right away.

most of the drs just try to blame their patients instead of listening to them and examining... it's really sad and very frustrating for all of us.
I think we're capable of feeling if there is really something wrong with our bodies, that's how I had the stamina to search and search for a diagnosis, despite of what all of them were suggesting.

Yes, your symptoms are very typical of neuro-lyme. I have a lot of neurological symptoms like you describe.

You need to find a LLMD (lyme literate MD) as soon as possible. These are the only drs. that are trained to properly treat lyme disease and lyme co-infections. Post a new thread on here with the title "looking for a LLMD in Kansas" and hopefully someone on here will have a recommendation.

Would you be able to travel to see a LLMD? Most people do have some travel involved in getting to a good LLMD. I travel 3 1/2 hours and some people travel across the country. Also, be aware that most LLMDs don't take insurance due to the controversy surrounding lyme treatment. However, if you have out-of-network benefits, you can submit for reimbursement and your insurance may cover some of it.

In the meantime, there are herbal protocols that you could use that will kill the bacteria. My LLMD recommends Stephen Buhner's protocol for lyme and co-infections. He has a website and book out. There are others such as the Cowden Protocol, etc. Remember that although the herbals are "natural" and not pharmalogical, they are still medications. You should start them slowly, one at a time, and if possible have a PCP do basic bloodwork to monitor liver and kidney function, WBC, etc.

Also, the lyme bacteria releases toxins into our body which causes an increase in symptoms. Detoxing is a way to get those toxins out of the body. The most basic ways are with tons of water with lemon, Epsom salt hydrogen peroxide baths, and a sauna. Just keep in mind that the detoxing can also kill the bacteria causing an increase in symptoms, known as herxing, so it's important to start slowly. The baths and sauna can kill the bacteria. Lyme doesn't like heat!

Just know, you CAN get better and get your life back. You've been sick for a while so it will be a long, slow, tough journey, but you can get there. The key is to find a really good LLMD. Make sure that the LLMD is ILADS trained, find out how long they've been treating, and what their success rates are.

dizzy,foggy,headaches[SEVERE],face tingling,no memory,no concentration,add,ocd,arthritic,light sensitive,digestive problems,confused,swelling all over,numbness,many HEART problems,brain disorders,feel like im goin 2 pass out,-stroke,-flu type feeling,many new allergies,cant drink,smoke,or eat,,,,,thats just a few off the top of my head,,THAT IS DAILY,,,ive been goin at this for 10yrs now +,,,wish i new what too tell u,,,ive been too,john hopkins,uva,wvu,and about 60 other drs,,,they dont have a clue,,,i was a diesel mech for30yrs,TOP NOTCH,,,now im lucky to even spell diesel....50yrs old now,life has really declined,i try to keep moving on tho,,,what gets me is that all these drs,still want to keep misdiaginosen me,and they dont want to recognize all the symptoms of all the people that are out there suffering,,,i been found positive for lyme,babesis,and several other diseases,,this is BS,,,enuff whinning,,,i wish u the best,HETRECAL,if anybody out there can help us,id appreciate the input,ty,,sincerally,Dennis

i saw the president of the lyme foundation,they dont seem 2 care about me,its like im expendable or something,1st they say i got it then i dont,then theY,LLMD,'S,,say ive been adequedly treated,then they say try this antibiotic,like a few yrs later,,so im definitly positive,,he even said,hes concerned with the babesis and no spleen,could b fatal,,possible miningitis,,,,neorologist says encephalitis,,,heart dr says lyme cardiomypathy,,gall bladder dr says i have bad gall bladder,BUT HE WANT'S LLMD 2 make diagnosis on lyme with no spleen 1st,,,its one big vicious cycle,,no communication,,,,im in limbo land,,,i think they are skerred,,,h#(( im skerrd,,,,ive tryd acupucture,MINIMAL,,,a few pins n the ear afew in the feet,,that aint phasing me,,,ive tryd 2 discuss homeopathy,BUT,its just discussed,,,im having a hard time fending 4 myself,,ITS CRAZY,,,i do appreciate your concern,,,,im getting 2 the point that mayb they wood like 2 do an autopsy,mayb where they can help others,,,IDK,,,,I WOOD LIKE 2C THE BEST HOMOPATHIC DR AROUND,,,,,,nobodys sterring me that way,,,they,my pcp,just talks about it,,,ive had a few pcp's,,,,its like take a asperin and call me n the morning,,,,at least my pcp did barely help with my dissability,tg,,,,,i definitely cant function,,,,,im like a vegetable,well dun!!!!!ive been told with my allergys and herx affect,that i shud be admited in the hospital,b4 taking any more antibiotics,,sum drs want me 2 try more ab's,BUT,with my long 10yr + period b4 being daignosed,that more ab's probablly wont work,and they might just kill me,,,this really s#$ks,,,hope 2 hear from u again,,,mayb with good hpthy dr n my area,,or sumthn

traveler,moderater,,,its me,,,,the one member postd that they new a homeo dr in berkeley springs,,,i coundn e-mail them as u requested,,it woodn let me...watz up with that,,,i coundn e mail u niether