posted
I'm trying so hard, but sometimes I'm in too much pain to clean up. My 7 y/o helps somewhat... but then my 3 and 4 y/o make it worse with their messes.
It's hard for me to supervise the children sometimes, as I can pass out sitting upright. I usually try to quickly usher the children up to their bedrooms for naptime when I feel this coming on, but sometimes the children aren't cooperative, and they end up getting into things while I'm passed out in bed.
And then there's the periods between being asleep and awake, where I start to hallucinate. Thing is, I know I'm hallucinating (auditory and dillusional thoughts), and I catch myself, but still it's scary.
I have people I can call in an emergency... but as some of you may know, sometimes you can't catch when it comes on. When I was at my worst, I had to send my children to live with their father, for about 6 months. I felt so guilty about that, and I got a lot of hassle from other people.
It's just scary being so sick with young children who rely on you. Does anybody relate, and do you have any advice?
Posts: 37 | From Jamestown, NY | Registered: Oct 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I think you need to see a neurologist if you can. You and the kids are in a dangerous situation. If you are taking medications, you need to talk it over with the doctor who prescribed them. You live not far from two good Lyme disease treating physicians. I will send you a message with their names as well as a good neurologist who is also nearby. Please be careful and good luck. Ann - OH
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
I sleep when I herx. Like last weekend--I literally herxed for 48 hours--I mean slept. It felt like I went to bed on Friday and woke up Monday morning.
Have you thought about pulsing? That is what my husband and I have always done. We take one zith a month--called pulsing. We pulse at different times so that there is always a cognitive, awake in the house at all times. If you pulse then you will know when you will be sick and schedule people to help you.
I know this isn't for everyone--but as we have to keep our jobs and raise our kids this is what is working for us right now.
Have you had your kids checked for Lyme? They sound awfuly young and you are awfully sick--when were you bit?
God bless, Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Caryn
Frequent Contributor (1K+ posts)
Member # 366
posted
i'm thinking the same thing as Linda. i'm a mom too that got bitten when my first child was just 9 mos old and still a nursing baby.
i don't know how you are managing. i can't believe what my family has been through. turns out we all have it; i passed it on to my children too. you really need to consider that your children may have this too.
Dr Jones in New Haven, CT. is a wonderful pediatrition who is truelly knowlegable about lyme, and has been treating and curing even the very sickest of children with this for decades.
my kids are older now, but it breaks my heart that we eat from paper plates and plastic spoons; funny, one of the mean "fellow moms" i was confiding in, and they were very jelous of me until i became deathly ill, then they really turned up the creulty, was a "scientist" who works for the gov.
the other is a highly respected "pediatric infectious disease specialist" who had on her website that 10 days is sufficient to treat lyme, the outcome for lyme patients and "post lyme" patients is excellent, some drs treat with too many antibiotics"...
anyway, you do not need to be hearing this right now. as one nice aquaintence told me "you should be commended for what you have done". but i am still so heartbroken at all i would have been able to do, and what a happy, enriched childhood they would have had. my daughter is an teen now. she has been wanting to have a sleepover party since she was 4 yrs old.
you need to see a good lyme dr as soon as possible. if you have anyone who can help you with housework and childcare, enlist thier help! i had no one. some relatives that took advantage of my illness to benefit from it or delight in making things harder for me. immeadiate neighbors either elderly, or horrid nasty people in sheeps clothing.
i did have my husband, but he is sick with this too (pos pcr and history of "viral" encephalitis". if i did not have him, i am sure i would have been thrown in a lunie bin and left to die an early age and my children taken away and given to someone who would not raise them well.
dying people can't take care of themselves very well, let alone thier children. what about mothers with other serious diseases? "legitamite" diseases like cancer and other? there must be services to help these moms. what about us?
i was so distressed that i could not do housework and could not take my kids out to do fun things and had no money to hire others to do the things i could not. can't even get the disability i should be getting thanks to the many drs who thought my symptoms unimportant at best. i imagine you are going thru the same thing to.
my guess is that you have had this for a long while and probably reinfected. we now know that is what happened to me. we unwittingly took photos of text book rashes on our vacations to Nantucket Island where i got bites. and took photos of reccurring rash, other recurring rash in my med records as well as a UPENN nurse sarcastically recording in my records an EM leasion as a "bite".
you may also have one of the coinfections. even after a dr dx me with lyme, and i was told by people he was an expert, was told nothing about the coinfections. i so obviously had babesia. erlichia, bartonella and mycoplasma fermentans are some others. i was promptly undx by many drs.
my dr is in NJ, and the first poster has emailed you drs closer to you. but it is VERY important to go to a truelly lyme knowlegable dr, also know as a lyme literate medical dr (l.l.m.d.).
it is heartbreaking to still read stories of people, especially young moms left to get so sick. it does sound to me that despite how sick you are, with real treatment, you will recover.
do be warned, that when you first go on antibiotics you will go thru something call a Jarisch Herxheimer reaction. first seen in syphillis patients ( also a spirochetal illness ) and your symptoms get worse at first, then start getting better.
when a dr gave me antibiotics when i was gravely ill with lyme for a nonexistant sinus infection, i experienced some improvement, i could move my head a bit ( barely kept me from dying from lyme meningitis ), but then my arms only moved in spastic jerks.
my primary "care" dr, a UPENN dr, scolded me for getting antibiotics, told me they would make me sicker. so do be careful. and be careful of which websites you go to. i was confused and frightened by some of the info on websites that i now know are filled with trolls.
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