posted
Hello. I'm posting for my wife, she's been home-bound last 2 years. Finally found affordable Rocephin treatment. We live in VT, she's found treatment in Westchester NY. Staying in extremely dysfunctional situation. She used to be a Visiting Nurse, Psyche dept. and thought she could handle "dry drunks", non-believers and the sarcasm that comes along.
We found out yesterday, treatment would be at least 3 months, maybe more, but up in the air. She started Rocepherine last week and is handling it as expected. We need to make life changing decisions, I say sell everything, move, complete treatment and have faith. Landlord here is unserstanding. As treatment goes, she fears, it could stop at any time, it may not work and home base is gone. If doc would commit to 1 year treatment, I'd be packing instead of typing. Can probably find housing in senior housing in Croton NY. She was bit in 1989, then misdiagnosed till we found "mid Hudson doc", has gone through orals for 18 months, Cowden method w/bicillian 5 months.. Parastesia, Parkinson-like movements, severe pain, memory loss, choking etc all treated by VT md's with anti depressants and oxycodone for 4 years. Her doubt is well founded.
So, any body in Westchester know of Temp housing for us and small dog. she misses dog more than me LOL We are both on SSDi, and the checks will not stop. She is the faithful one, and her lack of faith worries me. I have been the caretaker for the last 3 years, and so far every path I chose started looking out really good, then just like the Lymes got progressively worse. We have the ability to support a move, but maybe not recover from another breakdown in treatment. I'll even trade Boxes of bicillian, orals that were discontinued, and bottle upon bottle of supplements for a tent in a backyard.
Or just some inspiring sdvice. Luckily I learned how to scype, so we can see each other every nite. We also have never been apart in our 22 year long marriage.
Thanks for listening and any advice that you may have Bobby....Also, how about a house share. We live 30 minutes into the mountains, from Burlinton, satellite tv, high speed internet, perfect if you have just completed treatment and would like to gain some serinity back, fish for trout out the back yard, listen to the coyotes, and get some up close wildlife adventures. Bobby
Posts: 24 | From Vermont | Registered: May 2010
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Prayers to you and your wife.
Bumping you up to the top for more help.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Not clear on why you would move to get rocephin treatment. If she is a nurse, she can administer this herself, with training. A lot of people do this. How will she get it.....IV line, injections? Maybe if you explained a little more, we would understand the situation.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks for your reply's. Here is more info. Vermont medical community does not believe in "Chronic" Lymes. No doc in this state will honor an order, pass on an order, or give the infusion. As a nurse my wife found every avenue blocked. I think it goes like this..Get infusion "in patient" medicare, secondary covers but must have a docs order. No docs in Vermont will order an infusion to their affilliated hospital, the hosp. they have privledges at. So we tried out patient. Get med through mail but nearest doc, her doc in "Mid Huson" , I'm assuming like all other lymes groups I can't mention name, is 5 and half hours away, i make that ride, disabled myself, every 6 weeks for last 4 years, would be need to be seen evey month, at $165.00 a visit, 105.00 dollars a week for cleaning pic line etc..and up to 200 a month for supplements. Thats the deal after he made medicare changes in Feb.. And if the primary care doc, here in VT found out she's doing it, she'll lose her pain meds let alone not be picked up by another doc in Vermont. VNA will help, but must send progress note to primary doc and medicare
We got the Bicillin through the mail, and one of the visiting nurses, slipped up and reported back to primary care that the shots were painful afterwards but she was tolerating. Since then, the doc makes me wait till her last dose of pain meds is taken, before she'll hand me the script for the next months supply. She is trying to get us to quit her and our health care abudsman has given us all familar numbers to make ethic complaints but reminds us that we will be black balled in the state if we do. So the doc can't drop her, but can make everything appear as if she's med seeking. Biggest issue local hospital has is she was diagnosed in 1993 with "Cronic, progressive Lymes disease", however, they don't belive in protocol.
If a cancer/burn victim/severe neuro patient came here for treatment, they the family could stay at the Ronald Mcdonald house. Pam is beng treated in the docs office, Just outside Hillary and Bills town, in Westchester NY, some of you know the doc as I got this site from his office.. She stays with my 74 year old mom, who won't allow internet, so she 'borrows' next door neighbors signal when they are online, my mom does all the driving, for the last week, and is very controlling. While I was there last week my 31 year old nephew tried to commit suicide as a baby was due (they had it 2 days ago) and he was broke homeless and his girlfriend is 10 years younger, my younger sis, believes my wife doesn't try hard enough and all, even the lymes docs are wrong. no support there. Pam thought with her psyche expieirance and Al-anon (26 years) she could make it. She tried to get support through mid hudson doc, for supplements, and they told her 120.00 for 20 minute phone consult...She's already been on their supplements for 2 years just wanted advice to "tweak" for new treatment. So, I'm feeling like I have thrown her to the wolves, she's feeling like she has completly lost all control of her life. Example, new doc says cut down on chocalate, my mom refuses to buy her chocolate, I would buy her a box of her favorites, just so she could have some happiness. Thats a small axample. I digress Next week, they combine the orals with the infusion/injection, I guess they don't run the pic line. Here come the real hercs...She will be fighting back weather she wants to or not, she gets very emotional during bad hercs and I'll have to intervene but I have no place to take her, but home, to no treatment except oxycodone We have three grown kids 38, in California, 36 in Chicago, and 32 in NY. The one in NY is helping as much as possible, but can't get along with his grandmother. All three kids would help in any way, but stuck like me, as we don't know whats next.
I'm sure others have had to make these decisions, my heart says get her out of there, my medical background says treament comes first, then maybe all will fall together, my finances say retirement is already shot, go for broke, where ever that is. Pams family abandoned her 5 years ago, "delusional", not lymes. Hope that fills the gaps. sorry so long of an email. Any direction or suggestions will help, and I will follow them, have been for the last 10 years. Bobby
Posts: 24 | From Vermont | Registered: May 2010
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posted
In the interim, came up with a couple ideas. Pam's cousins may be an alternative for housing. I may be able to Get my son and girlfriend an extra car, if we can get hours for infusion, to fit their work hours. Pause treatment(Dangers in doing so), move to Mid Hudson Region, affordable rent, rope in kids, and move, restart in Hyde Park...How will pausing/starting effect resistance to treatment? Passed on site to Pam so she can give more accurate info, but please keep responding as it may take her a day or two to get started.
Wish I could afford Holiday in, Wish I could afford Motel 8...Still got rent to pay here, and an unco-operative healthcare system to destroy any dreams we've had..Reality bites Bobby
Posts: 24 | From Vermont | Registered: May 2010
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posted
Sorry, hard to know what to say. It sounds like you can only get insurance to pay if you get the IV done in NY. Right? Have you talked with the support groups in that area? Maybe they can come up with some advice.
Moving is a big hassle and expensive, if movers do it. So, maybe you could see how her treatment progesses,if it is possible to have her keep doing it there, before you make any life changing decisions. I'm not sure if pausing the treatment will produce resistance. Some people think it doesn't occur with lyme, or if it does, changing meds, then changing back can overcome it.
Really at a loss to help you. If she has been sick a long time, it may require long treatment, so you might factor that into your decision.
Posts: 8430 | From Not available | Registered: Oct 2000
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to Lymenet.
I'm sorry you're in such a tough spot. I think your son sounds like the best bet for you both. My treatment was three years. It could be for the long haul. If you could share rent with your son, that might make the whole thing easier.
I went to Hyde Park. I also didn't use IV, I used all orals and alternatives. He doesn't make you come up there every month, so that might work for you, then you could stay home in VT.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you for your reply's. Had long phone call with Pam today and it seems she is doing OK with herx, and actually had no problem getting out of bed for this mornings treatment. She normally can't get up till 2-3 pm, and said joint pain felt less. She says she is gonna plow it out, and the seperation seems the worse. Now 10 days in tx.
We were skyping daily but decided it brought up too much so we gonna cut that down. Her condition mimics "mandy's" in the film, and is a fighter also. Hope the responce to treatment is the same. She is looking into a showing of the film, somwhere in Richfield conn.(?) next week that we may be able to attend. She wants to ask some questions as there is a question/answer by some of the top docs.
The issues with treatment are not with the insurance, its with the medical board in Vermont. As a therapist, who worked in hospitals and for the state goverment, I have evoked every avenue to fight the insanity. Pam has also done the same, although she's more of a researcher. At this point, she has little retention when reading, and can't keep her eyes open long eough to finish a cup of rice pudding.
For the sinificant others...I wish there was a support group for us. Two years ago, I developed a severe anxiety disorder, secondary to PTSD obtained in the army. A VA therapist got me through it using an Alzheimers caretaker burnout model as a guideline to healthier responces actions and non reactions. I wonder how many folks have no help which only adds to the stress
I did send emails to two addy's for the Mid Hudson group, but got no reply. I do have a half trained therapy dog who cocks her head, listens, and wakes me with a wagging tail and exuberant mood every morn, but she has some Jack Russell in her and short attention span, so its hard for Pam to control a surprising yank. I'm now training her with a small harness and hope that she may be the piece that brings Pam comfort while she's in NY Thank You and I'll keep you updated on progress and the positve outcome of this adventure. Bobby
Posts: 24 | From Vermont | Registered: May 2010
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