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» LymeNet Flash » Questions and Discussion » General Support » Lyme has taken more than my health,,it is taking over my life!

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Author Topic: Lyme has taken more than my health,,it is taking over my life!
tashab
Junior Member
Member # 27977

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Hi, I am new to this site and i feel like I am suffocating, sinking in an ever growing consuming quick sand of Lyme.
After multiple tick bites last Sept. (i found some on my dog and gave him a tick bath...) I immediately noticed a few small red spots on my arms and chest. Saw a family friend physician informally, at her house around the block from my own. She prescribed me the usual Doxy and promised me that she had treated and cured scores of patients with Lume in this one dose manner. I was not Lyme literate, and neither was she, apparently.
Spots turned to multiple lesions,; I was sent from one Doc to the next , infectious disease specialists, dermatologists...you get the idea.
No answers. By this point I was symptomatic-flu, pain, the whole gamut
I got incredibly lucky and my brother happened upon a friend of his who happened to be a Lyme expert and had just finished production on "Under our Skin". After hearing him describe m situation she immediately recommended three LLMD that she trusted, in our area, and made it clear how to get tested through Igenex as a starting point.
Of course I tested positive, for Lyme,Bart,and Babesia. More surprises: considering my past history of high exposure environments, and my varied health issues prior to Sept.I learned that I was likely reinfected which had awakened pre-existing infections and the war was on.
Meanwhile, my daughters have had a wide variety of issues ranging from behavior to frequent unexplained illness and malaise. School attendance has been a major issue from the first day of kindergarten. That year, one of my girls was forced to repeat grade six, and the other couldn't cope with school on so many levels she was home schooled. I was involved in getting treatments, reacting badly and onto the next treatment cycle. The thought of my kids being this frightened me and overwhelmed me with the guilt that i may have unwittingly exposed them to this heinous disease.
When this Summer began, one of my girls developed reoccurring, nightly fevers. This was the kid who couldn't manage to go to school the prior year.
She tested positive, even according to the CDC standards.
She began treatment in August and could not tolerate it. She stopped eating. She has been enrolled at a local public middle school which began the day she began treatment. She really wanted to ease back into a normal life-and was more than ready to get outta the house and make friends. She has missed every day so far. The Doc has recommended the district provide accommodations for a tutor to home school her.
The cherry on this cake is we are very lucky to have a house of our own, bought by my parents when I was left by my spouse with nothing but two two year olds and no bank account, no car.,.so a rent free home was a blessing. We have lived here for 19 years, We are rooted in the community. It is the most stable aspect of our lives. Well, my folks were none too happy about last years home school option -there were eviction threats made. This year the child was enrolled and prepared to go to school. And now Lyme (and Co.) prevent that.
Needless to say, my folks "don't believe in Lyme" and refuse to become self educated on the matter.According to them I need a job-and so do my 13 year old girls-to help pay for household expenses.
I am having a port implanted in my chest next week. I have no idea how to manipulate the school district in getting the accommodations she needs.
And of course, As always, I'm between treatments, off meds and feeling every symptom in the book.
If anyone suffered through my lengthy pitiful rant let me say thank you, so much. There are so few people to talk with about all of this. I'm sure you know what I mean. Thanks for being there.
Tasha

Posts: 2 | From Palo Alto, CA | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
LightAtTheEnd
LymeNet Contributor
Member # 24065

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I'm so sorry you are going through all that. I'm kind of falling apart this week myself. Lyme has completely invaded everything about my life too, and taken so much away from me. Sometimes I feel like I just can't cope with one more thing. And then two things happen.

I don't know what we're supposed to do about the Lyme, or its complications (except get to an LLMD right away), or the financial devastation, or the loss of time and leisure and our former selves, or the interpersonal friction, or the emotional upheaval.

I just know one thing for sure. The only thing that definitely won't help any of it is giving up. So don't do that.

Do vent and make friends on here. It helps me so much to have people to talk to about all the frustrations that nobody else understands.

The school district should have various procedures in place to handle situations like this. Maybe start with the principal or the school district office? I have no experience with that myself, but others on here have mentioned successfully getting a home tutor for their kids, or other school accommodations.

Hugs,

Light

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

Posts: 756 | From Inside the tunnel | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
missing
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Your parents sound like they bought the house for you so that they could control and manipulate you.

That is very scary!

Homeschooling sounds perfect for your kids at this time.
We were going to do that for our daughter if she couldn't handle it this year, but she goes to a small private school.

They have a nap room and are able to work one-on-one with her.

They took the "Under our skin" video , are educating themselves, and even praying for her.

Our family is suffering other great stresses though!

Finances, jobs, extended family issues, and stuff like that!

Lyme creates a huge mess for all of us!!!

please! keep venting here! You and your kids are important.

One thing I learned too late in the game, was that I should have kept my mouth shut about Lyme as much as possible.

The more that people knew, the more word got around, the more SCARY things became for us!!!!

Posts: 606 | From somewhere out there | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
sprite8
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I have had chronic lyme for greater than 10-15 yrs. I know what you are going through and the rest I can only imagine.

Keep learning as much as you can. Lyme is real and devastating to too many of us.

God bless you and your family! Sending much support and hugs!

--------------------
sprite8

Posts: 38 | From MA | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
Member # 3410

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Tasha...breaking your post up so I and others can read it who have have problems in that area with lyme and company:


Hi, I am new to this site and i feel like I am suffocating, sinking in an ever growing consuming quick sand of Lyme.


After multiple tick bites last Sept. (i found some on my dog and gave him a tick bath...)

I immediately noticed a few small red spots on my arms and chest.

Saw a family friend physician informally, at her house around the block from my own.

She prescribed me the usual Doxy and promised me that she had treated and cured scores of patients with Lume in this one dose manner.

I was not Lyme literate, and neither was she, apparently.

Spots turned to multiple lesions,; I was sent from one Doc to the next , infectious disease specialists, dermatologists...you get the idea.


No answers. By this point I was symptomatic-flu, pain, the whole gamut

I got incredibly lucky and my brother happened upon a friend of his who happened to be a Lyme expert and had just finished production on "Under our Skin".

After hearing him describe m situation she immediately recommended three LLMD that she trusted, in our area, and made it clear how to get tested through Igenex as a starting point.


Of course I tested positive, for Lyme,Bart,and Babesia. More surprises: considering my past history of high exposure environments, and my varied health issues prior to Sept.

I learned that I was likely reinfected which had awakened pre-existing infections and the war was on.

Meanwhile, my daughters have had a wide variety of issues ranging from behavior to frequent unexplained illness and malaise.

School attendance has been a major issue from the first day of kindergarten.

That year, one of my girls was forced to repeat grade six, and the other couldn't cope with school on so many levels she was home schooled.

I was involved in getting treatments, reacting badly and onto the next treatment cycle.

The thought of my kids being this frightened me and overwhelmed me with the guilt that i may have unwittingly exposed them to this heinous disease.


When this Summer began, one of my girls developed reoccurring, nightly fevers. This was the kid who couldn't manage to go to school the prior year.

She tested positive, even according to the CDC standards.

She began treatment in August and could not tolerate it. She stopped eating.

She has been enrolled at a local public middle school which began the day she began treatment.

She really wanted to ease back into a normal life-and was more than ready to get outta the house and make friends.

She has missed every day so far. The Doc has recommended the district provide accommodations for a tutor to home school her.

The cherry on this cake is we are very lucky to have a house of our own, bought by my parents when I was left by my spouse with nothing but two two year olds and no bank account, no car.,.so a rent free home was a blessing.

We have lived here for 19 years, We are rooted in the community. It is the most stable aspect of our lives.

Well, my folks were none too happy about last years home school option -there were eviction threats made.

This year the child was enrolled and prepared to go to school. And now Lyme (and Co.) prevent that.

Needless to say, my folks "don't believe in Lyme" and refuse to become self educated on the matter.

According to them I need a job-and so do my 13 year old girls-to help pay for household expenses.

I am having a port implanted in my chest next week. I have no idea how to manipulate the school district in getting the accommodations she needs.

And of course, As always, I'm between treatments, off meds and feeling every symptom in the book.

If anyone suffered through my lengthy pitiful rant let me say thank you, so much.

There are so few people to talk with about all of this. I'm sure you know what I mean.

Thanks for being there.
Tasha

...Tasha....this was overwhelming just reading it. Can't imagine living it but I know others on this board who will be along or may have been along to help you as they too are single parents with children who are sick.

What I can do is focus on the positive:

1. You found a LLMD

2. You know what you are battling now healthwise

3. You have a roof over you head...thinking something about crossing that bridge when you come to it if you come to it

4. Did I read that the school district is sending someone to the home? If so, that hopefully will be good.

5. You found lymenet

I know there were mose positive things but brain is fading fast...

I also had the thought about eating this a bit at a time as the whole enchilada is way to big

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
Member # 81

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There are a lot of previous posts about dealing with school districts, so you might try the search function of this website, top middle of the page.

Probably have to wade thru a lot of them, not sure exactly what search words to use. Maybe other parents will come along and point the way. Maybe try Section 504 for starters in search.

And here is a general description of this law:

http://www.greatschools.org/special-education/legal-rights/section-504.gs?content=868

Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
tashab
Junior Member
Member # 27977

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Thank you so much to everyone for taking time to wade through my woes...
I've sent a formal written request to school district along with leaving numerous voice mails. No response as of yet.I imagine I will have to venture out and have a face to face with the unlucky receptionist at the District headquarters.
More thoughts on dealing with family in denial- I suppose that deserves a post and topic of it's own.
Thanks again.

Posts: 2 | From Palo Alto, CA | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
Member # 3410

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Tasha...it is good you know that some respond to mail and others to phone message and others in person.

I am hoping your family will come around. We are all different in how to handle that.

Your health comes first and the health of your children.

You are right. You might have to post a thread just on that.

Are you a member of the CA Lyme Support GRoup through yahoo?

They may also be able to help you with getting help through the schools.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
Frequent Contributor (1K+ posts)
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Tashab, I'm so sorry for all of your troubles. It's hard enough dealing with illness. It stinks when your family won't even acknowledge that their is a problem.

I don't know what we would do if we couldn't homeschool. It has been a life saver. My daughter would be a wreck if she had to get up early every morning and trek to school.

She can sleep in and then get her schoolwork done at her own pace. If she needs to lay down and sleep then she can.

I pray that your parents get educated for the sake of your children.

Maybe you could lend them a copy of Under Our Skin??

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
   

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