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View Full Version : Help me, please! Could it be lyme? Horrible symptoms...Flagellin p41 positive


Alexandra28
01-12-2019, 05:23 PM
I do not know how to start this huge text for which i am sorry. i am having problems in concentrating and this will make me jump from one thing to another...

I currently have all kind of symptoms: numbness, burning, itching sensations, head pressure, pins and needles, buzzing feelings in my left hand and leg... sometimes the skin feels burned like sunburn and i can’ t stand clothes on it, i have itchiness and Paresthesias... i have GERD, and i suffer of stomach pain, even 1 h with the car makes me dizzy and sleepy, i suffer of fatigue and i have strange sensations on my brain, my left year get’s stuff and i have constant tinnitus ...sometimes i get stomach problems and bowel movements

now for whom is in the “mood” to read the beginning of these horrible things...

My horrible journey started 2 years and a half ago, 2 years and a half ago my real life was taken away from me.

In 2016, i came from a trip from China, then two days later i had to travel with the car around 600 km, Reached at the destination and next night i tried to put myself to sleep and the moment i closed my eyes, the whole world was moving around me, so bad that i went to vomit, it ws my first experience with vertigo. I barely could fall asleep, it was worse when closing my eyes.

Next day i woke up more tired than when i slept, i could not concentrate, i was dizzy, i was seeing everything more far than they actually were, so i decided to go at the local hospital there, i want to mention that in China i started having horrible occipital and cervical pain, i could not sleep at night, also i had stomach pain for which later i found out i have a hyperacid gastritis. At the hospital there they made routine tests, all blood tests came fine so i came back to Bucharest where i had to make Brain MRI, cervical MRI.
All came back good except a brainstem cavernoma of 6 mm, and some cervical degenarive disks. Been at neurologists in my country also in Germany, all of them said i was born with this cavernoma and it is just there giving no symptoms like it doesn't exist as it was not compressive and the symptoms are not related to it.
I felt weak, vertigo, dizziness, unable to do things myself, started having panick attacks and anxiety, doctors had no answers.

I did all blood tests i could think of; Lyme disease (W.B Borellia), Hepatitis, MRI's, ultrasounds…so on so forth..
all came back fine. I did all kind of ultrasounds, medical exams, ENT... so on... NOTHING!

i started to experience nose pressure, like a tightness on top of the nose not inside, it became worse and worse, and also i could feel some veines on the root of my nose twitching.

I went to another trip, and after 1 day of car ride, in the night i started again feeling dizzy and vertigo, then 4 months i had vertigo everyday.
went to another doctor, made massage, acupuncture, made me some plant injections in the cervical, did this treatment two weeks, and i could sleep at night but only without pillow.

i had three brain mri past 2 years, last mri shows my cavernoma is 4,5 mm.
i can't travel by car, train or plane, as i feel all movements much deeper than anyone else. i can t stay in stores as i can t concentrate my eyes, i feel a tiredness in my eyes all the time, i can t do usual small things like cooking cause i feel my whole brain is spinning inside my head.

I had eye exams they came back fine but i can’t see paterns i feel sick, sometimes my vision is shimmering or balancing, i hate to see something moving, makes me sick...

i went to a vertigo clinique, they sad on the left inner ear my christals went out, so i have a peripheric vestibular syndrome, i had treatment and vestibular rehabilitation.


i feel bad from my galldbladder (analyses came fine), my eyes and nose (no sinusitis), i feel the blood doesn t come to my brain, i have tinnitus, i feel something it is wrong with the nerves of my face and head because i sometimes can press on my head with my fingers as the pain goes everywhere, sometimes i can't touch the pillow with my head as i feel a pressure on my head, i feel weak and tired, sleepy and drowsy, i hear popping noises from my nose (even the person next to me can hear them), i can t bend down to take something from down as i feel the whole blood comes in my face and it feels weird.

i experience thousands of symptoms and they are not in my head. i can't travel anymore, after a car ride or plane ride i feel horrible, one week can t move from bed.
i can t go on a treadmil, or do anything which relate to movement as after i feel like i am constantly on a boat (same thing i eperience after walking long time, or plane ride, or car, or train

sometimes i experience horrible cervical pain, i can t stay in a queue line as i get dizzy, i feel pain when moving my eyes. i feel bone pain on my head and face.


Sometimes i used to wake up in the morning more tired than when i went to sleep, my whole flesh was hurting like i have been beaten...

My joints don’t ache and they don’t get swollen. But the skin on my hands is full of pins and needles and burning and itching.

doctors have no answers for me, i am 28, i want to have a family, i want to have a baby but all i can do is sleep on my belly with my head turned on one side or the other.


… i have visual vertigo and before vertigo starts i see the image in front of me shimmering and balancing .. specially after travelling...

i have high level of homocysteine and sometimes my left leg feels like a brick, heavy and swollen, i risk of having blood clots

i need take high levels of vitamin B12, B6, B9.

Last month i repeated one time more my WB Borellia analyzes... other laboratory... guess what... came back negative AGAIN, BUT what makes me have questions until i go doctor again, is that P 41 Flagellin came back POSITIVE, anti human IgG came back POSITIVE and “Control” also came back positive... these three came back positive.

What does it mean that P41 Flagellin came back positive? Is it possible that i might have a parasite? Is it possible that i am not crazy and i don’t imagine? I can t function, my life is a total mess, everything changed since 2 years and a half ago!

I have to mention that when i was small i had played with animals in the country side and next morning my grandma found me with a thick stuck on my eyelid and she took it away. But i had no test for lyme, in my country people had no idea about this.

Is it possible that i have this in my blood since long time and maybe something triggered it (hormonal changes or God knows what)? Is it possible that that s why it s difficult for them to find it in the blood?

I am sorry for the long message... i am just very very desperate you guys...:(

Shay44
03-20-2019, 02:06 PM
You are not crazy. Ive had a similar experience. Theres are at least a hundred known species of spirochette and medical science does not recognize them all. The test only tests for one strain and thats bb.

I feel for you. My advice it to go to ILADS website. Click on the bars in one of the upper hand corners. Theres a section under that that will have you give them your email. They will email you a list of doctors in your area that can help you. All of these symptoms you shared. Tell that doctor that.
That should be enough. They will help you.

Also read the book, if you can "Cure Unknown." Dont let the title intimidate you. Its very explainative about the history of Lyme and lyme like disorders. Its very clarifying.

Its not in your head and keep your center in knowing that. History has a long way of blaming it first on spirits, witches and now the go to is "all in your head.."

I know you are scared. I get that way as well.
Please keep amd reserve your strength for you. Its a hard road. Im not going to lie...but if you need we can message. My journey sounds alot like yours.
I can be an understanding ear and I will share anything I know.

Go to ILADS website. I believe theyre for Europe as well and if not there must be a European version.

Look up different herbal protocols for now.

Im here for you and so is the forum. I just joined here so I dont know how much traffic it gets.

But know its not in your head. Look for doctors who treat Lyme. They also deal with many other infections and they look outside the box...most of them.

Im here for you and I know what youre going through. Even with a shaky diagnosis...went through that to...

That is a matter of politics rather than you being sick. Take heart. ❤