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03/16/2012 02:15 PM

Hello! 3 2 1... landing to Lyme world

Azuleja
Azuleja  
Posts: 29
New Member

Helloooo!!!

First of all I want to say thanks and big hug to all here, each word on this forum have helped me so much in my situation, has given me company, support, information, orientation, light, clarity, strength, patience, security ….. and more, much more. It has saved my life and my peace.

My language is Spanish, i try to write the best I can in English.

In 1992 I was for 2 mounths at California, USA, running like a happy young rabbit through some mountains there. Returned home, 3 years passed, in 1995 I ended on ER, was hospitalized, no doctor could explain what happened, what was it. I lost my semester in university.

Things never returned to normal in my body. Had recurrent UTIS, so I was on ciproflaxine and others abx frecuently for some years.

By the years, isolated new symtomps happened, no doctor could connect, but I could live almost normaly with it.

As I love nature and animals, a veterinary, animal doctor, talked me about Erlichia, I was tested positive and had a date with a new doctor, supposed the [b]“expert” doctor in this area here, 14 days of doxycicline and she said “you are cured”, this was 2002. [/b]

“”””“eXpert””””” maybe EGGspert or XXXspert or $$$pert? Uuf I calm, I know all she wants is money, years later I made her know I noticed it. Outside here is bacteria Corruptelia.

2008 I developed so much dry eyes and mouth, did my research and I suspected Sjorgren Sindrome, an autoimmune disease, for that time that was the name that better described my symtomps.

In this country its not so known, and there is the myth only aged people have it. This was another long fight with doctors.

2010 I was given the diagnose of Sjorgren Sindrome (met criteria, including lip biopsy), I went in another great forum, something didn't match me completely.

Some doctors begin to say it was lupus, one even said MS, all exams came back normal, some said me it was all in my head and send me to psychiatrist. I have wasted all my savings and my little insurance.

Doctor for that moment said me to [b]take esteroids, I mentioned him the Erlichia, just in case. He said “no problem, take the esteroids, you will feel better” , [/b]

I came home, got info on the net, and said to myself NO ESTEROIDS, never took them, have the box here. I suspected infection by Erlichia was still in my body.

In Sjorgren forum, I found a subgroup of people who had Lyme, pop pop I remembered the Erlichia again, what I read about Lyme matched so well with what I felt. That was how I reached this forum.

I begged my dentist for an order for testing Erlichia, yes I keep begging for orders.

The test I did was serology for Erlichia Cafeanis, luckily it included Anaplasma Phagocytophilum because the kit used in that lab is imported from USA, and includes that test.

Tested 3 times, this public institution does it almost free, Anaplasma came back positive the 3 times, 2011.

The bioanalists also had the initiative to do other exams to discard crossed results.

The beginning of this year I was on ER because of pain in all my body, tinnitus and like electricity and pressure in my head, I felt and thought I was going to die.

I read about Lyme co-infections, anaplasma is one, I wanted to get tested for Lyme.

For this moment, i was feeling in hell, hardly walked, the desbalance was so, I felt like I was a jelly without my skeleton… and a lot of more symptoms, panic for neurological ones, omg the eyes and brain noooo…I cried and cried.

The better days I tried hard to move to get some help, information, organize and take decisions. No lab does some of the Borrelia tests in this country, much don't even know it exists.

I was figuring how could I do the exam, finally I found a lab that send the blood to the United States and does the test (I would have liked Igenex, but well..) , Borrelia Serology came back positive IgM.

Wow what a surprise, the cost of this test was cheaper than the ones made here, I spent 2 month thinking of doing it because of money and the precision , 2011.

I didn't find a doctor to treat me. The best I found in the Infectology Society of this country was:

“Go to another country to treat THAT and stop reading on the internet”.

They didn't show even some curiosity, I felt IT WAS important. At that moment I couldn't even think of going to another country, because of my bad health and the lack of money.

Maybe in 100 years there will be a LLMD here, I cannot travel in time, but I can travel in space, actually I will focus little to little in going to California again, 20 years after.

My family is from Europe,

I live now in South america, how to make them understand this of lyme?

If with my closest family is hard and I am tired of trying to get understood and of listening things like:

“just do exercise” “its age” “eat better” “but you look fine” “are you taking drugs?”, oh I wish things were so simple to fix.

Maybe this makes me want to be alone. They don't have idea, I am trying to do the best I can.

I have felt a new kind of loneliness in all this fight where most people around me just think I am crazy and lazy.

I am happy I have had my mother helping me in all senses, for that, she got so bad judged and treated by the rest of my family, I had to put some of them in their place and even cut relations. Hurts.

Friends…. Friends…. Ahhhhh…………the friends I had…. I remember….

I was so bad, I took my decision and I got myself on abx and supplements, I didn't have another option, uuuf I could find the abx.

I am on my 4th month, yes its so slow and desesperating, but the direction is and must be: feel better!!. I am feeling better today, its glory!!! At least for somedays!

I have less dry mouth and eyes, less tinnitus and yesterday I could make a 2km walk to the street,

after 6 months mostly just walking in home, that's wonderful, scared of how I would feel today, its going ok. I have to recognize and accept a lot of limitations.

Ah, just one thing more, one doctor had the balls, to not even look at my lab tests and say to me that all this symptoms where in my head and they could be cured with sex, lol would be so easy.

Maybe the next doctor sends me to a witch, here witches are an option for most people. At least I am not on the medieval times, where probably people would say I am possesed by the devil and send me to be burned in the village square.

I do have so much questions (always), rigth now i am getting a little tired and strong headache, had time without long writing, that's so good.

Sorry, I want to say so much. Waaa think I must go to get some rest in bed a while, though its difficult to sleep.

Strength and patience in this fight!!! Kisses Smile

P.D.: i have taken ticks off my body a lot of times, and in different places i have been, but dont remember a rash.

deleted link which was icon; icon didn't appear, bettyg, leader

Post edited by: Bettyg, at: 03/17/2012 03:13 AM

broke up long, long paagraphs; emphasized, bettyg, leader

Post edited by: Bettyg, at: 03/21/2012 12:54 AM

Reply

03/17/2012 03:16 AM
Bettyg
 
Posts: 32210
VIP Member
I'm an Advocate

hi azuleja Wink

please EDIT your post using my posting guidelines below. we can't read it as is; too long of paragraphs with those of us with NEURO problems.

thanks for helping us help YOU Wink looking forward to reading your story.

bettyg, leader

Welcome to MD JUNCTION! I'm so glad you found us! You've come to the right place for education and support!

Private messages DELETED in 30 days!

ARCHIVE, upper right!

My WELCOME LETTER is posted at the top of SUPPORT FORUM in sticky pin full of good info and HYPERLINKS ready to be read.

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/2356916-bettygs-welcome-letter-wgood- beginner-links-

The most important things are at the top; MUST READ and print off as mentioned there already to start your lyme/co-infection journey with us all.

The 1st things to do are:

• JOIN LYME BOARD;

• Post in LLMD REQUEST FORUM for a LYME LITERATE md; see my welcome letter and the INSTRUCTIONS there if you are SPECIALLY FROM CALIF. Where it's broken down into 8 NAMED AREAS.

• You'll need to give me my calif. NAMED area where you live in the areas shown there in SUBJECT LINE plus if it's for ADULT or a child; we need age of CHILD; some llmds have AGE restrictions.

• OTHER STATES will show the SPECIFIC NAME OF THEIR STATE and closest, largest city to them in SUBJECT line plus adult or child; UNDER 21; we need their age!.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/Itemid=217/func=post/do=reply

• Also, I'll need the following info in your request post:

in your llmd request, please EDIT and add more info ok.

Are you UNDER AGE 21;; if yes, I need your age shown as some of our llmds have AGE RESTRICTIONS; thanks!

how long you've been sick

if you've tested for lyme/co-infections;

which labs doing work for which specific test, etc.

did you have western blot igm/igg done by igenex?

if yes, what were the POSITIVE & INDETERMINDED numbers; NOT negatives.

thanks for understanding; just EDIT your post. you can find all by going to left MY DISCUSSIONS, click on it.

after you add more, i'll send you names ok.

just send me a PRIVATE MESSAGE left side, giving me the direct link to come to here, and i'll send you the names ok big thanks.

Betty's suggested posting guidelines:

NO ALL CAPS POSTS; they are illegible to me/other neuro folks!

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 42 yrs. neuro chronic lyme, so we are UNABLE to comprehend and read. Thank you for helping us help YOU

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX per paragraph and hit ENTER TWICE to doublespace between each paragraph. We've lost our comprehension skills to read solid block text.

we neuros lose our train of thought if the sentence is broken up in the middle; so please keep an ENTIRE sentence together as ONE. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit

ENTER key twice after each paragraph.

Go to left hand corner; click edit send. Then go to bottom and click SUBSCRIBE TO THIS DISCUSSION.

Thank you for posting in a manner that makes it easier for all to read and help others.

Bettyg, llmd coordinator/group leader/iowa activist


03/20/2012 07:34 PM
Azuleja
Azuleja  
Posts: 29
New Member

Hi Betty, thanks for your repley and your great work, sorry for condensed text, i tried to do it with spaces, in word document looks different. For the next post i will take better care Smile

Hugs


03/20/2012 11:50 PM
lyme99
Posts: 42
Member

Hi Azuleja!

Welcome to the group! Keep us posted on your progress and I commend you for never giving up on finding a diagnosis. It is amazing how most of us end up diagnosing ourselves after years of doctor visits with no answers. I just 'diagnosed' one of my good friends with Lyme! She has ordered the Igenex kit and is going to schedule with an LLMD to get started with treatment. Anyway, take care and better days are ahead!


04/06/2012 10:54 AM
waxby
waxbyPosts: 4811
VIP Member

~~~Hello Azuleja, Welcome!

~~~Please click to go here, my profile page, for information and support, then scroll down to "Read My Diary" for around 37 entry shorts, for some more support ...

~ http://www.mdjunction.com/mem/117464

``` ~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell ```


04/07/2012 10:38 PM
Courious
 
Posts: 678
Member

Good luck and don't give up.

We've all lost friends.

We have all been told.... eat better, have a better attitude.

I am so glad you figured it out.

Keep studying.

It is a slow road to health... but we will get there.

God Bless you.


05/10/2012 08:04 AM
Azuleja
Azuleja  
Posts: 29
New Member

Hello again, has been some time, i have been in a flare...

Thanks all for your welcome, made me feel so good and draw a smile on me. We keep fighting Smile I write little now, feel exhausted. The thing is, seems my sister also have Lyme.

Hugs and love.


05/10/2012 01:43 PM
Bettyg
 
Posts: 32210
VIP Member
I'm an Advocate

az, thanks for checking in; sorry you've been herxing, and sorrier yet to read your sister has lyme too.

misery loves company Angry

hugs/prayers,

bettyg, iowa activist forever

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