Hi Everyone, I am really needing some help with all this...I have been a member of this group since 2009, but until recently I forgot!I have lyme. My husband has lyme. Both disseminated. We have 5 boys, they have all tested positive for lyme. 1 of the boys is disabled as well with a brain malformation and is in a wheelchair, cannot walk, he is 4 yrs old but functions at a 1 yr old level. So that is its own stress.
Ok. We really need some mentoring/help/etc from another lyme family who understands the complexities of managing bills, budget, work, family, kids schedules, kids schools, and all that this entails because we are getting extremely tired and overwhelmed and confused.
We have been managing like this for about 4-5 yrs now. But we really aren't functional. We rage. We are depressed. We are in physical pain.
I have not worked in almost 4 yrs due to my lyme and caring for my disabled son.
My husband works but barely. Barely coping mentally, or physically. He has alternating panic attacks and depression and confusion with his Sx. We cannot afford for him to lose his job. We need the medical insurance!
I have an exhusband who thinks Lyme is BS and won't go the LLMD with us and has accused me of muchin-by-proxy at times and thinks our 10 yr son is being lazy.
He has threatened to have him move in with him to straighten him out.
He says that because of the wide variety of sx, it must be hypocondriac.
I have been sneaking our son his lyme meds for 3 yrs now. When he is with me, he takes his meds.
When he is with his dad, "he's fine, no issues, no meds", says dad. I send dad invites to the LLMD appt, info to educate himself to no avail. He completely denies that lyme could be passed from mom to baby.
All 7 members of our family have panic attacks and severe anxiety.
We each alternate yelling at each other, can't leave the house, can't go to school due to fear of leaving the house, and my two older boys who were once really strong students now lay around fatigued and can't remember their school assignments.
This is the biggest issue right now. Hubby is depressed and rageful, I am rageful, the kids are having freak outs and crying and losing their minds.
My 5 yr old is about to enter kindergarten but his panic attacks are so strong he might need to be homeschooled.
We are seeing a PANDAS-type MD for him as he shows some autistic tendencies that flare when he goes off his meds.
Our ped MD even recommended psych meds for them...prozac for all 5 of my kids. WOW
Not one of us has long term memory, and so we all forget everything. I forget to pay bills. I forget my online passwords.
We therefore have alot of financial issues because I forget that we have these bills. Hubby is even worse.
We have no support system.
Our families think we are full of it and don't understand, "We don't look sick".
My mother calls me a slob because I can't keep up with the housework of 5 kids because of my fatigue and pain. "How can you live like that".
Well my house is average clean I would say, but its not perfect and this makes me very nervous when my disabled son's social workers come over to work with him. Some days, like today, i feel SO horrible I can't even stand up.
I have been getting better to the point of being able to type, walk, and speak with clarity, because at one time I lost these abilities, but I am still having big probs with anxiety and functioning as a mother and a person.
If anyone out there understands these issues and can relate, I would love to get in touch with you, because some days I am great at taking care of everyone else, and some days I can't even remember my name.
We all have 3 sets of positive lyme tests, my coinfection tests are negative but I am convinced, after 4 yrs of treating the lyme, there must be co-infection involvement because things are not resolving to the point of being functional.
We do alot of nutritional supplements, vitmains, herbals, and minocycline, cednifer, azithromycin, nystatin, alinia, bicillin LA, and we have been on many many more, this is our latest cocktail.
LLMD is not really considering co-infections because of the negative test results. Keeps referring me to focus on supplements at this time. Been doing that.
LLMD does not want to put us on IV. Says orals work just as well now, according to new research. So, we have seen 3 new LLMDS in so Cal in the past 6 months.
They have not really been any better. I am pretty educated on all things lyme, when I can remember. No one will do IV for us. What's up with that??
Imagine 7 people in a household herxing. Its not pretty!
HELP!
Angela