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Old 09-17-2008, 06:16 PM   #1
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Join Date: Sep 2008
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kylelove1112 HB User
Help Single Mom Lyme Disease Ruining my life

I'm at my wits end with this Lyme disease.. I went undiagnosed for 2 years finally got a positive for Lyme and Babesia.. found a LLMD who started me on Mepron and zitromax..I felt a little bit clearer in my head to begin with.. since then he's had me on omnicef, flagy for 4 months I went through hell on that, thinking it would make me better, all to no av ail.. now he has me on zitromax, Riamphin, Suprax and questran. I feel awful I dont know how to cope with all this as I'm a single mother with a two and a half year old child. I push myself to do the basic things like bathing, cooking and cleaning up, I cant play with him or go to the playground. I'm constantly exhausted, muscle aches, brain fog the list goes on. I also have developed Multiple chemical sensitivities. I cant work at the moment and am relying on handout outs. I'm scared we'll become homeless as I dont have a soul to help us. I've asked my Dr to put me on IV but he says I'm too toxic right now..he charges alot of money and is taking on too many patients..last time I went to see him I ended up seeing the Physcians Asst..which made me mad as he's comes highly reccommended and I pay to see a doctor. Pls if anyone has any advice on some antibiotics that might be more successful let me know..has anyone tried questran??that was the PA's suggestions she also thinks I have Bartonellla despite testing negative. I just want to find something that works has anyone developed Mutiple chemical sensitivities since getting Lyme??

 
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Old 09-18-2008, 09:30 PM   #2
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Join Date: Jan 2005
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6Blues HB User6Blues HB User6Blues HB User
Re: Help Single Mom Lyme Disease Ruining my life

Hi kylelove1112.

I know exactly what you're going through. I'm a single mom of 2 and I went through (still going through) the worst this disease has.

I'll try to keep this short, but when I get yapping, I go on and on and on ....

I was working a great job, had 2 little ones, just bought my own house (a broken piece of junk) and was doing all the renovations myself. I was healthy and in a great place in my life with friends, boyfriends, family, hobbies, a great dog and cat, etc.

Skip ahead a year or two and I was barely alive.

I completely lost my sense of balance. I had horrible fatigue, bad vision problems, no short term memory, brain fog so bad I could barely function, trouble speaking, weight gain (100 lbs), hair loss, PAIN, fevers, chills, killer headaches, etc.

I could not get mail from the mailbox. Utility companies came to the door to shut us off. Home repairs came to a screeching halt. I surrendered my animals (broke my heart!!!!!!!!!) to good homes.

I worked from home and I sat on the sofa and worked because it was too much effort to walk to the other side of the room where the computer desk was. I slept on the sofa because it was too much effort to go to my bedroom. I would log onto my computer and a conference call and I put the volumes of the phone and computer on high so I could nap during work but wake up if I heard someone call my name.

Garbage began to pile up. There were pizza boxes everywhere because I could not cook or clean or shop. I stopped brushing my teeth and showering because the only renovated bathroom was on the 2nd floor and climbing stairs felt like a trip up Mt. Everest.

Laundry and dirty clothes were all over the place. My kids had to cook for themselves and get themselves out to school and do thier own homework and school projects and laundry and answer the phone and all sorts of things that little kids shouldn't have to do.

I taught them how to use my debit card. I would drive to the grocery store and sleep in my truck while they went in and shopped. I taught them how to get cash back from purchases, so they had lunch money.

If they missed the bus in the morning, I just started to cry because I could not manage getting shoes on and driving them 2 blocks to school.

I had to keep a chart of all my medicines because I would take a pill and then 5 minutes later, forget if I had taken it.

We had no Christmas tree a few years in a row because I could not manage it. I just couldn't do it.

After work, I would lie down where I was sitting and try to sleep. I battled fatigue and insomnia at the same time which is the worst combination to live with.

If I was working and my kids walked in the room to ask me a question, I didn't comprehend either what they asked me or what I was doing at work. It felt like 2 trains crashing in my head and my brain wasn't firing correctly.

I probably has severe depression also but was too sick to realize it.

The lawn did not get mowed. My kids hardly went anywhere because I could not drive them. The trash can didn't get put out at the curb and my garage filled with years of recyclables that never got put out for collection.

My friends and family avoided us like the plague once I got sick (I still harbor resentment about this but I'm working on forgiveness).

I lived in sweatpants because getting dressed seemed like a major operation. I didn't brush my hair. It was in a pony tail for years.

Once, my daugher made me a bowl of soup. She carried it over and handed to me. I reached out my hands, but my coordination wasn't working and it spilled all over me, burning my lap. I could not jump up. I could not react like a normal person. I just sat there, covered in hot soup, sobbing my eyes out.

I lived like this for about 2 years, give or take, and I was being treated at the time. I even ended up in a mental hospital. That was traumatic for me. (I'm starting to cry now even remembering that experience)

The worst part was that I had to be my own advocate. I didn't have a husband to bring in a paycheck or drive me to the doctors or even hold me while I cried or to help out with the kids. I have family that lives nearby, but they avoided me when I got sick.

I did it alone.

In hindsight, I should have gone on disability. I had no one in my life to tell me to apply or help me through the process.

This board helped me A LOT. It helped just to post when I felt I wanted to die. It helped to read others feeling the same way I was.

Another thing that helped me was to see an LLMD. If your doctor is a good Lyme doctor, you may want to keep him, even if he's not perfect.

Or maybe you can search out a different one. If you post where you live (apologies if you mentioned this already and I didn't remember), someone can recommend an LLMD.

For the first two years of my treatment I tried many many antibiotics. Different ones work for different people.

It depends on your metabolism, your immune system, which strain of Lyme you have, which co-infections you have, etc.

I tested positive for Lyme but negative for all the co-infections. The first two years of my treatment, my LLMD focused on the Lyme.

Then, on a hunch, she started treating me for Bartonella and put me on Levaquin. A few months on that and I felt tons better!

Oh gosh - sorry this is so long!!

I feel MUCH BETTER NOW! Tackling my co-infection first helped me the most. I can think and talk and walk. I don't know how, but we made it through and you will too.

I have to commute to a job now and I'm barely managing it. I cry when I drive home because I'm so tired and everything hurts.

Hang in there. DOn't give up. It may take a while for the medicines to work, but you will feel better someday.

Your son will survive. He'll be fine. I know it must be so sad for you to not be able to even take him to a park to swing on some swings or even go outside and play.

Try not to feel guilty.

If you take care of yourself and concentrate on getting yourself back to being healthy, you'll have given him a great gift.

Try not to worry about your finances. I know it seems impossible and you must lie awake at night wondering what will happen to you, but try not to worry. Stress can exacerbate your symptoms.

Maybe you can find a social security disability lawyer who doesn't take money up front? Maybe you can call a local church or temple or hospital and ask for assistance?

Maybe you can call the local library and ask if they have a program for little children and volunteers who can bring your son there?

Maybe call your doctors office and ask if they know of any programs that you qualify for to get some assistance or they can put you in touch with a support group who can refer to some assistance?

I don't know what state you live in, but some states offer free health insurance for kids and offer discounted insurance for adults. Might be worth checking into.

Also, pharmacuetical companies offer discounts. Writing a letter might save you some bucks.

Sometimes when we take action, our fears don't seem as big and scary. I wish I could make these calls for you!!

I wish I had answers for you. Just try to hang on.

Hope you don't mind some questions ....
How were you diagnosed? How long have you been under treatment? How long does your doctor keep you on each protocol? Have you done any detoxing? Have you tried any alternative therpaies?

Hang in there and feel free to post anytime. This place is always open.

Peace and health to you,
Mickie

Last edited by 6Blues; 09-18-2008 at 09:31 PM.

 
Old 09-19-2008, 09:44 PM   #3
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Join Date: Aug 2008
Location: grand rapids,mi
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patttyyy HB User
Re: Help Single Mom Lyme Disease Ruining my life

Hi........I know this post is from along time ago ...............but your story hit home. But.............I had a husband that didnt do anything for me.
I had carpal tunnel surgery and about a week after the surgery I woke up with a horrible headache.........................over 20 years later I wake up with a head ache. I have had all kinds of test ,meds, doctors etc. I also had to 2 kids.............my sister thought I was just lazy until one night she had a severe headache and just wanted to call a ambulance to take her to the ER................after all these years she came and apologised to me. She feels gulity about not trying to help me.
When I first got the headache it changed my life forever yes even divorce which I guess in someways I wanted. He was stopping me from trying to get better he was a alcoholic/work-alcoholic.
I just had to post because everything you said that happened at the beginning of your Lymmes house kids...............same here in alot of ways
BUT NOW LOOK..............WE BOTH HAVE COME ALONG WAY NOT 100% bottom line we both have learned to cope with it better. Yes I am still praying for the miracle someday but to this day I have Chronic Head and Neck Pain.........the doctors way of saying (THEY DONT KNOW) and I now have a wonderful guy of 10 years that from the beginning was told of my disabilties.........I am one of the lucky ones.
Take care and I would love to hear how you are doing

 
Old 09-25-2008, 04:07 AM   #4
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Join Date: Jun 2007
Location: Planet Earth
Posts: 480
Nexis HB User
Re: Help Single Mom Lyme Disease Ruining my life

Your post touch my heart. I am in a very similar situation.


I want you to call IGENEX. There's a doctor there. He's amazing. Tell him about your situation, that you are seeing a doctor right now yet because of the complication, you need to know if you are being treated properly.

The doctor there knows alot of the LLMD. If he doesn't he can provide you solutions or advise.


If you are a single mother with Lyme, please contact a state social worker, tell them your story. Asked them what your options are.


There should be a free legal aid society in your area. You need to talk to a attorney and find out what your rights are and options with your Lyme condition.

This is going to be a very burdensome process in the beginning yet you need to do this in order to protect your future with your child.

I know I am there with you. I have no family in the area, none of the doctors here know about Lyme, having to care for someone, etc.


You need to make alot of phone calls, but please do it. Take one day at a time, yet always move forward, whether that be that you made one phone call a day, did something to help you move forward.


Please keep posting, there's so much emotional support here as well.

 
Old 09-29-2008, 09:32 AM   #5
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Join Date: Jul 2007
Location: Bloomfield, Michigan
Posts: 22
MichiganLymie HB User
Re: Help Single Mom Lyme Disease Ruining my life

Patttyyy,
I am responding because I too live in Michigan. I have Lyme and Babesia. I still work but struggle each day with various symptoms. One of the worst has been the terrible neck pain. It is unlike anything I have ever known. No one understands. I wonder if you know about the LLMD (Lyme Literate Medical Dr.) in Grand Rapids? He is my Dr. even though I live in Bloomfield Hills. He has helped me quite a bit. Not sure who you are seeing now. Let me know and if you want I will give you my Dr's. name. Good luck - it is very, very hard to be chronically ill and I understand.


 
Old 09-30-2008, 11:45 AM   #6
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Join Date: Aug 2008
Location: grand rapids,mi
Posts: 11
patttyyy HB User
Re: Help Single Mom Lyme Disease Ruining my life

Hi .........Michigan Lymmie neck pain be the worst it is like my shadow and never lets me forget it is there. I was reading the long post about the girl with Lyme ...........so sick having a hard time with her house and kids........it just reminded me of myself years ago when my kids were young. It is just so sad to hear it. I t brought back so many memories.
I have neck and head pain for 20 years so I decided I was going to research for myself. I think I have hit on something called Chiari. I am going to ask my doctor who is going to do a MRI again to do the special one that has to do with the spinal fluid flow. Hopefully he will listen to me,
I dont know much about Lymme my sister in law had it........her eyes swelled up huge and they put her on antibotics she was sick for several months.
She lives in Florida and I asked months ago and she is doing fine. When I went camping near Lake Michigan I felt the top of my head and I felt.. something so I grabbed it and it looked like a tic. I dont think it was embedded and I didnt get sick.
We have alot of good doctors here and I am happy to hear you are getting good care here............we are lucky. I also call it the mini mayo clinic city.
What does your doctor think of the headaches??? Is it Lymm related? I have a TENS UNIT and I love it you place the electroyes where the pain is and you feel a different sensation.......it doesnt take the pain away but allows you to feel something different then just pain. Ask your doctor if he feels it would be good for you. Most of the time insurance covers this they cost $785.00. You can place the elect-patches on your neck ,back legs , hips etc.. Most of the time they let you take for a 2 week free trial.
I really hope you find some relief soon I know exactly what you mean with neck pain.
I havent heard of the Lymme doctors here I dont know much about Lymme but well aware of it. I think I will go read up on it. Keep in touch and let me know how you are doing ok?

 
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