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Is it Lyme? My painstaking journey until I find out what it is .

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Old 09-25-2008, 04:33 AM   #1
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Is it Lyme? My painstaking journey until I find out what it is .

I want to thank everyone including Ticker who have led me to believe that my unknown chronic medical condition is most likely Lyme.

Because I am really losing in touch with what is happening on daily basis, too tired and extreme dizziness to get my blood tested and sent out to Igenex, I want to use this thread as a daily log to remind me of my progress.

I have no family members, I went to the infectious disease center and told me that band 41 is not enough, I went through a horrible ordeal because I cannot take care of myself, my home, my animals, etc.

There's no LLMD in this country yet I found one doctor who is familiar with Lyme that is willing to work with me and the test that I will receive back from Igenex in a few weeks.

Though I have to say that the doctor and the staff at Igenex have been of tremendous help. It made me cry that there are people who care and understand that this Lyme disease is nothing I have experienced in my life. I have been always physically active, I could go to the gym 4 times a week. Now I am up to no good, just in bed all day, my mind in a fog.

I have no social life anymore, people think its not as bad as I say or feel it is. I think I may have develop severe depression. I will talk to my doctor the next time and see if there's meds that will help me.

I dont want to talk to anyone anymore, I feel so ill and I look fine. How can I keep telling people I am having medical problems yet the doctors don't know what it is for over a year? I am sick and tired of being sick and tired.

For now this is it, yet I want others who are single mothers and people all on there own that I know what you are going through and experiencing.

I will keep posting on this thread of my progress if the moderators will allow.

This is the only place besides my doctor's office that I can come to. There's no place for me to go.

Last edited by Nexis; 09-25-2008 at 04:35 AM.

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Old 09-25-2008, 08:37 AM   #2
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Re: Is it Lyme? My painstaking journey until I find out what it is .

Nexis I feel we all know how you are feeling. Many of us had jobs, families, friends, homes, savings accounts, spouses...and on and on....Many of us have hit the bottom. It is a really odd feeling like you were saying trying to explain this to other people. and they look at you like..."are you out of your mind" you look fine! You look healthy...ugh! It is truly a nightmare.

I have recently been included in one of my family members weddings. It had been along time since my family wanted me around. There are alot of mixed emotions there on my part. But it is a start Things that I have to let go. Things I have to try and understand. Things that I have learned not to talk about. it has all be too weird for words.

I lost a husband, baby, job, house, my mind, my friends (at that time), my family (for years). No money, was rejected by family cause they thought I was ohly stressed about my husband leaving me. hahaha...oh boy...Lived by myself only having 50 dollars left to feed myself.

Seven years ago I met my current sweetie online. haha..only way I had in communicating with people. And I met him. Boy I have always felt that was a God send. It hasn't always been easy on him. There were so many times taking me to the ER for shots to calm me down, so many times I called my councelor to come talk to me. So many suicidal threats. I have swelling between my scalp and skull. and it has really really thrown me for a loop. I had only one doctor say it is encephilitis ...oh boy it is just insane stuff. My current doctor says it is the "bacteria's that I have and or the Virus's or all of them" Which is echepilitis...

anyway 9 years of antibiotics, herbs, vitamins, homeopathic, massages, accupunture and still battling this stuff. But went possibly 15 to 20 years with out the probper treatment before that...

I am just rambling. Just had a bad week and it feels good to vent once in a while ...

I myself kept everday logs on how I felt. I didn't do the pain 1 to 10. I just wrote things down in like a diary or even on calendars...fevers, migranes, CRAZY"S, ect ect...

I hope you find your answers soon! I like many many people here understand. Your not totally alone.

Thank you for letting me share on your thread.

Hugs to you!

Old 09-25-2008, 11:23 AM   #3
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Re: Is it Lyme? My painstaking journey until I find out what it is .


Thank you very much for sharing your story, it breaks my heart when I do hear other people's story of what they have gone through and experiencing.

I lost something important myself and when others here share their stories, that we are not alone, yet once I become better I feel the need to advocate regarding this condition.

Turn the pain in to an empowerment process for those searching for answers and for those like you suffering for many many years.

I want to thank you again for sharing with me your story. And I pray too for others like ourselves to get better, find better solutions for this condition.

Old 09-26-2008, 08:54 AM   #4
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Re: Is it Lyme? My painstaking journey until I find out what it is .

Hi Nexis and Jojo.

I've been there too. My losses weren't are deep as Jojo's but I can relate to what you're going through. (Wish I could give you both a big hug!!!)

I spent a few years living on my couch. My bedroom was such a pigsty, I didn't have the energy to walk in there and clear a space.

I didn't shower, change my clothes, sometimes I skipped brushing my teeth because it was too much effort for me to walk to the sink. (gross but true).

I completely lost my sense of balance, I have permanent vision problems and ... so many other terrible symptoms I went through. yuck!

I too lost my friends, my animals (had to surrender them) and my family. I cannot come to terms with this yet. I would never treat anyone like they treated me. I cannot understand thier motive so I cannot yet forgive.

I was too sick to realize that I should have gone on disability. I was too sick to pay my bills, take out my trash, do laundry, cook or clean. Pizza boxes were piling up all over.

I don't know how I managed. I guess it was the grace of God or something.

These boards were my only form of communication. I posted constantly.

Some of my old posts are still here, buried somewhere. Run a quick search on my name and you can read my painful experiences. It may help you to know that others have gone through exactly what you're going through.

Here's the hopeful news .... I feel MUCH BETTER NOW!

I've been on massive doses of antibiotics for almost 4 years and I feel much better than I did.

Everyone is different though. Some folks here found relief using non-traditional treatments. Others found relief sooner than me. Some antibiotics work for some but not for others.

I know there are LLMD's (Lyme Literate Medical Doctors) all over the world. If you want to post where you live, maybe someone can recommend a doctor. Have you tried searching for a Lyme association or foundation in your country?

There are places in the U.S.A. that will give references to LLMD's. I cannot post thier name or number; you'll have to search and find them yourself.

I'll be thinking about you. Remember that we went through it too and that someday, can't say when, but someday you will feel better!!

Peace and health to you,

Old 09-26-2008, 08:59 AM   #5
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Re: Is it Lyme? My painstaking journey until I find out what it is .


My short term memory was so bad that I had a chart to keep track of my pills and my symptoms.

When I took a pill, I had to make a check mark on the chart because 5 minutes later I could not recall if I had really taken it.

I found out that there are online symptom trackers that are free to use. Maybe that would work for you? Of course, I want you to post here ... I'm just making a suggestion.

On a bad day, I could not rate a particular symptom on a scale of 1 to 10. All I could manage was drawing a happy face or a sad face or even just scribbling the words "not too bad" or "really bad today".

Scary way to live. You'll make it through.

Hang in there, ok?

Old 09-26-2008, 09:33 AM   #6
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Re: Is it Lyme? My painstaking journey until I find out what it is .


Thank you too for sharing your similar journey and your support. I feel better that there are people here that knows these symptoms are real and we are not faking it.

I try so hard to keep up with the chores. I am keeping my life very low key as possible right now, and set strong boundaries and be honest with people that I am dealing with medical problems and that I want to keep in touch yet I cannot see them like I use to.

I will browse your old posts. It will help me to move forward, as well as to keep a better perspective.

Speaking of LLMD, I went to the Government's infectious disease center and said there's only one person in the entire country! I went to see them and they were just a dermatologist! and after the test came back, they said that band 41 was positive and that's not enough! I tried to argue my case with both the LLMD derma and the infectious disease researcher here, yet they said too bad, you're not positive enough to receive treatment!

Both of these doctors attend the Lyme disease international conference and if I ever come back positive from Igenex, I am going to make a report about them to the International Lyme association that they belong to.

Its alot different than the USA here in regards to the medical industry, yet I found a doctor here that's not an LLMD yet knew of Lyme, and they are working with me right now to get the blood to Igenex and see what we can do from there. My doctor already did research regarding antibotics, and the doctor at Igenex was very understanding and said that if I need to come to the USA I he can refer me to a LLMD since he's very well connected.

Thank you again and I hope to stay connect with you on the boards.

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