I'm the woman in Santa Fe with Lyme, who has been writing a lot recently on this site. I got Lyme 15 years ago in Mass, but my doctor there missed it for 5 years.
(He was very sick and died 2 years later of Crones disease, so I bear him no hard feelings.) Then, when I was too sck to continue my job, I moved to Santa Fe,
thinking all I needed was a year or two off of the east coast rat race. Now I've been here 10 years, and after suffering with all the symptoms and worsening
conditions due to undiagnosed Lyme, I finally got a diagnosis from a doctor here. She's very good, and one of only 2 LLMDs in NM. However, even she has
addmited she is in"uncharted territory" with me, because she only sees maybe 5-6 Lyme patients a year, and my case is so progressed (adrenal failure,
neutransmitter failure, IC, leaky gut, malabsorbtion, mood swings, severe neuropathic pain, inability to walk, the works..." that she's out of her league.
As a result, I am constantly doing research and educating her on all aspects. It;s too much on top of being ill and mostly alone, and trying to survive, if not to get better.
I am just like the rest of you, I know you are all (or were at one time) as sick as I am now. The difference to me is that there are no support services here, NM is the poorest state (we finally beatout Mississippi,) so
there is no state aid or services. On top of it, insurance is a HUGE battle - I know you all battle it too, but it seems like those of you living whre Lyme is endemic
have a better time getting coverage. (Ex: I have spent the last 4 months fighting to get IV Rocephin, after 3 clearly failed trials of oral drugs. I fight my doctors, the
insurance, and I spend over 5 hours a day calling, writing letters, trying to get help. Maybe if I was just living somewhere where people knew about Lyme
disease, esp. doctors, this might be easier to deal with. I am thinking of moving back to Boston area (I still miss it, even after 10 years, so it's my first choice, and I have
several contacts there) or New Jersey - where I am from and have 1 contact, or San Francisco, where I have 1-2 contacts plus better weather.
I need advice. Lots of advice. You could not write too much. Please - anything - tell me what you think, what you would do if you were me.
In Santa Fe, I have several very good friends - they are my family, and a couple of people who ar not close, but we say hello. (Santa Fe is notoriously non-community oriented - everyone just comes here to be left alone...)
As for blood family, I have only a sister who does not speak to me, a mother in Florida, who I love but neither of us wants to live together, and I don't think there are many good LLMD or Lyme resources near Vero Beach.
I have 1 cousin in Annapolis, whom I haven't heard from in 2 years, (my fault - too sick to keep up.) I am already broke and in debt, but I would sell everything I own,
borrow money, whatever it takes, to get somewhere if I thought it would ake a difference. I feel like I've wasted 10 years of my life. I ame her @ 29. I was young, intelligent, had a great job I loved in Boston...
I am now 41 - old, wrinkled, scarred from unnecessary surgeries, and so sick I can't take care of myself without help. I cannot leave my home myself, and cannot walk around the block - can't make it to the end of my street.
Here I am in this beautiful but useless backwater of NM. I love the light, I love the beauty, I love 360 days of sunshine, I even love the high altitude (7000 ft.)
Please - I need advice. I am (as you can tell,) desperate. I am most often homebound, and very weak, but I think maybe I could get people to help me pack and move.
I could stop my drugs for a couple months, and that would help my head stay clear enough to get through the process. I know it would set me back and I'd be very
sick when I got there, but - I feel like I am drowning here. What do you think?
-------------------- Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)
"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club) Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006
| IP: Logged |
posted
If you have a local doc who is at least friendly and would provide primary care, maybe you could travel occasionally to a CA lyme doc, for instance, but stay in NM to live. Just thinking that moving is a big ordeal in itself. Especially if you aren't doing well healthwise. Any chance you could travel out of state to visit a LLMD, so your local doc could have some backup? She might be happier if the whole burden of treatment were taken off her shoulders.
Don't know what to say about the differences in cost of living. Santa Fe is expensive, but so are other parts of the country. Seems like you would want to research that aspect before you made any definite plans.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
I read your post with a lot of sympathy. I bet a lot of us can relate to your feelings and circumstances.
I live in San Diego, where the cost living due to housing is extremely high. But Boston and S.F. are more expensive. I am treated by my local MD, who is in sync with ILADS and who was the only person to finally diagnose me. 80% of his chronically ill and fatigued patients have tested positive for Lyme. He is great and does the best he can, but he too has said he's in "unchartered territory".
I think that's something they learn to say in med school.
I went back east to NJ to see an ILADS Lyme specialist, and wanted to get assessed by the Columbia Pres folks. I was disappointed. However, during a huge long herx in my second round of abx, even the ILADS doctor had "never seen anything like it" and did not know what to do. I was shaking and trembling -- once you get on this board, you find out these are fairly common occurrences.
I agree with Lou that moving is stressful (how would you do it if you can't walk around the block?). I could not walk a year ago, and now I can -- although progress is still ver slow and shaky.
Moving isn't going to cure you of Lyme Disease. But having a doctor you trust is central. If I were you I would ask my doctor if she would be willing to work with a consultant, and then work with you in choosing one.
I don't know if there is any difference in regions regarding insurance coverage. So far, my insurance is paying for all my oral abx but will not cover IV. My daughter and I are both sick. The out of pocket abx would cost us $2000 a month alone, not to mention the morphine, probiotics, supplements etc. But with insurance it is only a co-pay -- so far. I have heard of friends back east whose insurance is not as generous with Lyme as mine is. So it just depends.
If I were you, the questions I would ask myself are: Where will I feel safest during my treatment? Where will I get the most reasonable medical care? Where can I live where I would have the least stress?
Being sick, as you are, makes me feel desperate and despairing at time. Is this what you are feeling? I think it goes along with Lyme.
Before I got really sick I wanted to move back to Manhattan. But I am glad to be housebound in a nicer climate -- there is space and light here, and warmth -- as opposed to being cooped up in a small two bedroom apartment.
My advice (take it or leave it, only you know you the best) is to NOT make a decision while feeling really sick, scared and desperate. Talk to your doctor about working with a Lyme expert out of the area and see if you can set that up. And then if you decide to move, go where you will have the best support system.
That's all I can think of right now. My heart goes out to you.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Hi, I have lived in Santa Fe for the past year and a half. It was there that I finally after being sick my whole life learned I have Lyme, so does my daughter and my mom who had a diagnosis of MS.
From what I understand there is ONLY 1 Lyme specialist in the state of NM and you aren't seeing him. He has helped me and my family with several things that we had not worked out already. My mom saw him when she came to visit from Hawaii and is now make major progress after about 6 weeks of ABX. If cost is a problem for you, he is not cheap, $250.00 hr. which he just recently raised. He and his daughter are both Lyme sufferers and he was previously sick to the point of being bed ridden. He still is unable to work a real full time schedule, but in Santa Fe, if you don't have to, why would you.
He uses natural alternatives and meds when needed. If you can swing going to see him, I do recommend him. He is close too, just in El Dorado (sp doesn't look right).
I am sorry you don't find people very friendly there, I thought they were some of the friendliest people that I have ever met, but then I am from S. Cal, where I had to come back to just recently. If you would like more info on Dr. K, I would be happy to share it with you.
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
bettyg
Unregistered
posted
do you presently have HEALTH insurance? Is it transferable to wherever you're thinking of moving?
In a wheelchair; I surely wouldn't want to live in Boston, with all the snow/ICE/blizzards and be stuck in a wheelchair.
Have you signed up for SSDI, diability insurance benefits for SSI? I'm pretty sure I supplied you with the DISINISSUES web site area where you DON'T NEED A LAWYER to win your claim.
Time for me to log off; I'm tired! Best wishes to you. I'd stay where I'm at; the STRESS of moving isn't worth it!
Try to meet more friends and LYME friends online or a local support group. Best wishes.
maybe make a list of what it is you need and write the pros and cons of each one...
is there anyone to bounce your thoughts off of there who understands Lyme? If not I am pmimg you. i know how hard it can be to be alone and stuck in an ill body..
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
| IP: Logged |
posted
Wow - thanks to everyone for your support. I keep hearing of more people in the Santa Fe area, so I think I am going to start up a support group, since the old one down in ABQ is no longer.
How to answer everything you all asked in one short (for me) post? Not possible, so I will email you individually where I think I should. As for the rest...
You are all right about not making major moves or decisions when one is this sick. I'm just sick of being sick. And I'm tired of fighting the insurance folks, the
credit card folks, the Pruden... people who didn't pay my disability insurance, the tenant who stiffed me on 2 months utilities, the phone company who won't fix the lines, the
landlord who won't fix the fireplace... There are solutions to all those little problems, but, as you are all well aware,there's no energy here (in me) to attend to
them. As the great old dame was known to say "I'm tired...of playing the game...tired..of screaming your name....I'm so tired!"
I am a single woman, with no family in town, and my only real family is 2000 miles away, and she's not always the easiest person to deal with.
I'm broke, I'm in debt, and I don't even have my head on straight for long enough to pay my bills on time. I'm in that hard place - 3 trials of oral abx have all made me
sicker with major Herx, but blown my gut out so I had to stop before making major headway in killing the demons.
So - now I'm even weaker and more sick than when I started 6 months ago, after 15 years of misdiagnosis.
The 1st 5 years I lived here, I was too sick to do anyting but work/sleep. I didn't make friends until I stopped working (yes, I have SSDI, my only income, not enough in Santa Fe).
Eventually I made friends, but as anyone from here knows, there area lot of wackos in this town, and a lot of good folks don't stay long.
Most people I meet here are just scraping by in a town where the cost of living is big city, but the wages are 3rd world..
(Maybe that's because I'm so scrapping by that I can't afford to go to the places where the folks I'd have things in common with - other than my current abject poverty - hang out. )
A lot of people say Santa Fe is a beautiful place where people just want to be left alone. I guess I just don't want to be alone as much as I am (98% of time, for 10 years...) A little overwhelming.
I was 29 when I moved here. I was young, recently divorced, and on top of my game, if a little sick. Now I'm a 41 y.o. (still) single woman,
and most people my age are couples with a different lifestyle than me. I would gladly be a part of their lifstyle, but they are not always so interested in mine.
As you all know it's hard to be alone with this disease, and very hard to maintain friendships when you can't go out and play, and often must cancel last minute.
Lots of my friends have moved on to bigger and better things in different cities, which makes me feel like the loser on the island of misfit toys...
Anyway - all of that is just on bad days, and today is a good day.
FYI, there are 2 very good LLMD's in Santa Fe - Dr. K, as everyone knows, and Dr. S, who is not as well known, but is very, very bright and not only LL, but good with
other neurotoxins, molds, etc.. And she's a she, which I relate to. I found Dr. K a bit harsh. Actually, my last conversation w/ him left me thinking -"oh yeah, that's
the other Boston -all those haughty mean spirited folks..." I'm sure he's not really like this. I hear many good things about him, and he has a nice face from his online stuff.
It was my fault - I missed my appt w. him and lost his number and didn't call for weeks b/c I was too sick to think straight. He was one of the 1st calls I made as soon as I was capable, but he was more than a little p.o.ed (understandibly).
I probably also caught him on a bad day. I had been thinking of seeing him for his opinion, but his coldness, and lack of understanding, not only as a LLMD, but as a PWL, really put me off.
That's when I started thinking I should get out of this town. But, there's a lot of good here too. It's just that I haven't had a real chance to enjoy it since I moved here.
At least not for more than 10 days in a row, with weeks in between, and I so I want my life. I want family and friends who come to dinner, and spend time together, talking about somthing other than their spiritual path.
I rarely find that here. Maybe it's that I worked at a large University, where everyone is very much into learning and sharing knowledge.
People here often seem so impoverished (in one way or another) that they clutch every shred to themselves, rather than sharing or risking opening up to others.
Of course, you could say that you get back what you put out, so I'd better make sure I'm putting out what I want to get, right? I do have good friends, whom I love dearly, I just want a bigger life than the 8x10 box my bed is in.
Anway. My LLMD goes to conferences and keeps up with Burrascano, Bransfield, etc..and is always ready for more reading from me. She's a little more agressive
than Dr. K in her use of antibiotics, (his statement, not hers) which is where I'm at right now. But, she is extremely wholistic, knows alternative meds as well as western, and is very warm and kind and spirited.
My NLLPCP is as charming and lovable as can be, and always willing to help me with PA paperwork or whatever, and rarely charges me a dime. I am blessed..
There are some excellant DOM's, chiropractors, and alternative practitioners here too. The one I see works with Dr. K regularly, and she is AMAZING. Far out stuff that I would not have believed if I had not experienced it first hand. She is genius!
My case (just as the rest of yours), is complex, because it ravaged my body for so long before we caught it. I can not take any neurotransmitter meds to lighten my mood, without major stomach trouble. I take 75 + pills
every day. AllI want (at the moment) is to get a PICc line and a few months of IV Rocephin, and access to the city ride service, and I have spent at least 5 hours a day for the past 38 days trying to make that happen, and am no closer...
So- thanks for letting me lose it online. If Santa Fe had MORE good doctors, LESS black tar heroin, and a real ocean sand beach, I'd never dream of moving away.
But wait - given the state of global warming, tetonic plates, and the budding NM film industry, another 10 years and we'll have all that!
Thanks and hugs to you all!
ps - If anyone is interested in a SF support group, give me a holler - my house is huge and easy to get to, so, I'd be up for it...maybe we could be the first Lyme support group/Texas Hold-em (penny anti,of course, or better yet, bring the meds you can no longer take to use as anti...)
-------------------- Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)
"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club) Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006
| IP: Logged |
quote:Originally posted by lymiebabe: maybe we could be the first Lyme support group/Texas Hold-em (penny anti,of course, or better yet, bring the meds you can no longer take to use as anti...) [/QB]
Now, THAT'S a novel idea!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
I am in Albuquerque, New Mexico. Not far from you at all. I will PM you with more info. New Mexico is a backwater, but it is a hotbed for alternative, holistic, and progressive healthcare. You can get better and more effective therapies here than in many places if you know what to look for. Take care and stay strong.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
lymiebabe,
i just have one question for you. is the restaurant "dave's not here" still in sante fe? i was thinking about relocating out there in 90 when i visited.
seriously, i really feel for you and your struggle. i consider myself very lucky to have caught the disease before i got to the stage of not being being able to walk.
have you pmd trails? she lives in ca. temporarily, but is really from nm, and i think it's sante fe. she left because of bad health care in nm. i think. she's very nice and i am sure she would talk to you.
keep sharing with the board and everyone else you can talk with. you won't feel so alone.
i know how much it helps me with my isolation issues and feelings of being stuck in a rut.
by the way, i love your quote from mark twain. it's truly beautiful.
good luck with your decision making process.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Thanks for bringing this to my attention Hopeful!
Yeah, I lived in NM for 10 years with 2 relapses of lyme.
NM is a very mixed bag as far as lyme treatment. I lived in Las Cruces, actually in Old Mesilla, which is in the southern part of the state---no one knows it, and I loved living there into my soul.
I moved to CA to be closer to LLMDs but also coz it is where my parnter got a job that has bennies for BOTH of us. I am no longer able to work.
I hate CA so much I cry almost every day. It is so so so so expensive to live here and not worth it. If the job would appear, we would be back in NM in a heart beat.
The mixed bag of NM lyme treatment: no one knows it, but the good thing about that is no one is HOSTILE about it either. I have found in endemic areas, there is STILL hardly a doc who actually knows anything and there are MANY more docs who are very hostile to chronic lyme sufferers. I find this is much worse than living in ignorance.
In southern CO there is a doc who treats only chronic lyme. He is expensive, but very kind and would be willing to work with your doc to get you the best care possible.
There are LESS services here in the central valley of CA than I saw in southern NM. Also most CA insurance co's have a strict 28 day IV cut off. I am hoping that Dr. F's research will be published and I intend to be one of the first to fight this cut off all the way!
Moving from NM was the most stressful thing I have done in years. And that is saying a lot--as there were baby deaths, surgeries, quit smoking, and lyme stuff.
It seems to me that there are more and more lymies up there in Northern NM. Any chance you guys can get together for some support?
If it were me, I'd stay put. I just dont see that the insurance issue is any better in any other state. I think maybe CT might have some regs now that make it hard for insuarnce co's to cut off IV or long term ABX, but besides that, everyone else is the same. Who is your insurer?
You need to be where you feel supported though. However, moving to a newish place means trying to make friends and build that support all over again. This is VERY difficult when you are sick.
I feel for you. It is very lonely to be sick with a disease that no one knows or understands. But as I said, at least people dont roll their eyes at you and say "well, I had lyme 3 times, and I am fine." Or similar hurtful things. In NM I felt like b/c it was unknown, people took my illness seriously.
Lastly---are you being treated for co-infections?
I hope you are having a pain free day, say hello to the desert and the sun for me, pm me if you want more info, take care, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
I moved to Santa Fe from Upstate New York while I was still fairly ill with Lyme. I went through a lot of ordeals there like the ones you mention. I am much happier down in Albuquerque.
People are more down to earth down here. That said, it is hard being anywhere with Lyme.
You take the disease with you everywhere you are, and the disease makes a person lonely, depressed, incapacitated, and it makes other people who don't have this illness react to us as if we are lepers.
I like the idea of a support group. I would be happy to give rides to people in Albuquerque who need a way to get up there.
Santa Fe is definitely weird to live in. I don't know how many people I met up there who told me things like they were aliens from the 7th dimension and that a race of giants once roamed New Mexico, etc. Definitely out there!
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
![[lol]](graemlins/lol.gif)
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic