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Welcome Scorpio to the board. She needs some buddies in AZ.

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Lyme Disease
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Posted 1/28/2009 6:34 PM (GMT 0)
I have chatted with this sweet lady. And she sounds like she has hit rock bottom....like most on this forum. I wanted to put her in contact with others who are living in AZ or others who are looking to come to AZ. She like me is doing her whole thing alone. Which is really tougher when one cannot even drive.

I think it would be a great idea for thos of you who are looking to try to do treatment out here to team up. Since getting a place to stay is most likely the most exp. part of doing treatment for many.

oh by the way...there is a marriott across the stree from the clinic.

Scottsdale Marriott at the Mc Dowell Mountains.

'NZZN"

 

Posted 1/28/2009 8:02 PM (GMT 0)
Thank you so much Maria.

Yes, teaming up does sound like it might be a great option. I'm in the process of gathering information and plan on going to a lyme specialist in Manhattan for further testing next week. After that, I will need to make a decision. If I decide to go the Envita route, I'll post to see if anyone else would be interested in sharing an apartment since that does sound like an excellent idea. I can't drive but either we could share a car service or I could contribute more to the expenses in exchange.

I also believe that groceries can be ordered on-line and delivered from Safeway, although I'm not sure if this service is available in all areas of Scottsdale. I will check later. I ordered all of my groceries this way the last time I was in Scottdale for an extended visit. The only problem is that I do not believe they have a huge selection of organic food but it is definitely a solution for someone like me who is not well enough to drive.

Post Edited (scorpio1960) : 11/21/2009 4:25:01 PM (GMT-7)

Posted 1/28/2009 8:09 PM (GMT 0)
I have met some really nice women on this Forum that live in AZ, and some even in Scottsdale, that are also looking into their options of treament. But they will have to come forward on their own. Ok....Deb...hehehehe
Since lymies have their good days...and then all of their bad days..lol. It would be great to try to alternate these days..ha. But no one is nicer and more supportive than a fellow lymie. But know one else knows our pain.
Don't worry so much about only organic. I mean...try to eat rigth. But your lyme is what is killing you..not your local grown tomatoes..lol
The best rule to eating well is this....eat the brightest colors that you can. If it is not colorful, it is not good for you. And wash your veggies and fruits off well.
ok mommie....:>)
Posted 1/28/2009 9:21 PM (GMT 0)
Good luck to both of you and I hope you find some relief soon!
Best wishes~
Posted 1/28/2009 10:26 PM (GMT 0)
Scorpio: From personal experience with BC/BS, I would not expect ANY reimbursement on their part as I have just gone through this with them. (another clininc) Out of $5,000. worth of treatment they sent me $150.00 with enough excuses to write a book. If envita is out of network for BC/BS  (and I would bet that they are) BC does not have to reimburse you anything. A tough lesson for me, dont want you to make the same mistake.  D

Posted 1/29/2009 12:02 AM (GMT 0)
Wow that sucks dowa.
Most insurance companies will cover abx and getting a port. And unlike the other clinic out there. The FDA is behind Dr. Korn all the way. So maybe that has something to do with his success.
Snake on here is at the clinic now..ask him.
Oh there is a person who handles this for the clinic. Getting things through. One women got 100 % of her treatment and the other only 60%.
I am not even going to mention to my Blue Cross that I have lyme. Since they have been so terrible to Dr.s with law suits that treat outside of the box.
And since the CDC said that I do not have lyme...according to them...then that is what I want them to think. So that they do not find a reason to dump me.

Dowa you know what the say about assuming. ...lol
Posted 1/29/2009 12:17 AM (GMT 0)
Check and see if the hotel offers shuttle service to local grocery stores too. We did this when I went to Mayo in 2004 ~ the hotel offered a shuttle to downtown for shopping, so we didn't need a rental car.
Posted 1/29/2009 2:41 AM (GMT 0)
Abanana - Thanks for the good wishes. Sending same back to you and everyone else here.

Dowa - I'm sorry they didn't cover more of the cost. Unbelievable! I'm going to keep my fingers crossed and hope for the best since that's all I can do at this point but it's good to be forewarned.

Marie - I'm hoping Envita comes back with some good news for me.

Razzle - That's great to know about the shuttle. If you went to the Mayo in Scottsdale, do you mind me asking where you stayed? At this point, I'm not well enough to go grocery shopping even with a ride but hopefully at some point that will change.
Posted 1/29/2009 4:40 AM (GMT 0)
Scorpio...one step at a time. You will meet so many nice people who are in the same boat as you at the clinic. Stay positive.
I would call ask the people at the clinic about the food issues. And also getting a frig in your room. I was doing my own shopping after 4 days. And could not do that before. without fainting in the grocery store..or...better yet...walking out and now knowing which car was mine...lol I only had one for gods sake!
I know the area very well now. And the there are many grocery stores to choose from very close by.
I was not a big eater when I got here. It was such a pain in the neck. But pack your goodies for your trip. I carry around my protein bars and force them down.
I hit the AJ's here everyday for their salad bar and force myself to eat it. I am not into the terrible room serive food where I am staying...god the chief should be slapped silly. It is terrible!
I would tell them in advance that you need a frig. and on the way in from the airport have them stop at a store for you.
then get the fresh stuff that you want.
I would have my bad full of the other stuff that you like.
And then...give your self a couple of days....and then see....It is like going through the drive through in a dirty truck. you will be able to see out of your wind shied for the first time in a long time.
then you will be asking me how to get to the cool mall in PHX. And looking for the best deal on a rent a car on a montly bases...cause you are bored in your room.
you will see. keep the faith girl.

you have to stay positive. and fight...I know you are a fighter girl! I am behind you 100 %. I will do what I can for you.
You are not alone. ..:>)
Posted 1/29/2009 5:56 AM (GMT 0)
Welcome Scorpio to AZ - I am new on the Board but have lived in AZ for almost 4 years now. I am a transplanted NYer. My Mom has just been diagnosed with Lyme's last week and is going ahead with treatment at Envita. The port will be done this Friday and treatment begins next week. We don't live in Scottsdale but we live about a half hour away. I read that you might be considering treatment in Manhattan. There a Modern Chinese Medicine Clinic in NY. If I can help in any way while you're in AZ, let me know! Best of luck!

Dawn Marie

Post Edited (dezynr) : 1/28/2009 11:11:17 PM (GMT-7)

Posted 1/29/2009 7:16 AM (GMT 0)
Thank you so much Dawn Marie. That's very sweet.

I hope your Mom does well at Envita. How many weeks does she need to go? For some reason I'm freaking out over the possibiity of getting a port so please let me know how your Mom handles it. I realize that I'm being a big baby when it comes to this and am sure it will be fine.

I'm still waiting to hear back from Envita about how much my health coverage will cover before I can make a decision.

What part of AZ do you live in?

I was actually planning on relocating to Scottsdale right after the New Year but was too ill and put all plans on hold. Then I find out that I more than likely have chronic lyme and am now considering Envita, even though I have an appointment next week with Dr. R in Manhattan.

Anyway, thanks again and I wish your Mom much success at Envita.


Valerie
Posted 1/29/2009 3:22 PM (GMT 0)
Actually my Mom is not very keen on the idea of a port AT ALL! - it was a rough decision to say the least. Her treatment will be 6 weeks beginning next week. My Mom's health insurance does not cover anything at all. But if it means getting her better we will get the money together no matter what. I live in NW Phoenix near Lake Pleasant and my Mom lives in Surprise (about 20 minutes South of us). I have really got to get my Mom on here and have her connect with everyone. Gotta go call her and see how her day is looking - tomorrow is the big day. Good luck making a decision - I know it's not easy. Will be in touch...
Posted 1/29/2009 5:01 PM (GMT 0)
I understand how your Mom feels and as crazy and irrational as it sounds the port thing is cauisng me more anxiety than anything right now although if I don't figure out a way to pay for treatment, I won't have to worry about it. I also heard that the doctor I plan on going to next week in NY will also want to aggressively treat and insert a port right away. I'm sending your Mom good wishes and peaceful thoughts in the hope that tomorrow is not too stressful for her. She's lucky to have you.
Posted 1/29/2009 5:18 PM (GMT 0)
I was worried about my port too. I had to do the treatment through my arms for the first week. Because I thought I could handle that better.
I am not crazy about needles. But it hurt so bad having them stick me everyday in my arm. I hated that. My arms looked like I was a drug addict.
And the arms shut down on me. My left veins stopped working..so they moved to the right. I hated it.
Everyone here had a port. It looks like a button under their collar bone. They would not even cringe when getting theire port stuck. I was jelous. So I hurried in to get mine. They very next day after getting my surgery I was in the clinic getting it tapped for treatment. Everyone was looking at me in the room. I was by myself....high on pain killers...lol..and before they stuck me I was crying. I was so scared to have it touched.
And then.....nothing. The tiny needle goes right in through a tiny thin piece of skin...and it is in. That was it????
I felt silly for crying...but they all understood.
I am going to keep my port for a year or so....maybe two. In the event that I have any more problems or if I go and sit on a tick this summer. I am going to keep it justso that I can get this easy access to meds if I need them.
One tiny bandaid covers it up. So no big deal.
Anxiety is your lyme talking. The surgery does not take more than about 30 minutes. The surgeon is a sharp lady Dr. You will be more irrated by the IV that they put in you before surgery and the blood that they have to draw that morning..than your port will every throw your way.
You will grow to love your button. :>)
All you will remember about your hospital stay is the very nice women that all work there and counting backwards from 10.
It does not hurt anywhere near getting a IV in your arm. All of the cute little kids here at the clinic who have cancer has buttons too.
So don't worry yourself about it. It is a cake walk...take it from the biggest baby on here!
:>)
Posted 1/30/2009 12:44 AM (GMT 0)
Thanks. The way you describe it really does make me feel so much better about it all. I hope Dawn's Mom gets to read it before tomorrow when she gets her port inserted.
Posted 1/30/2009 4:06 AM (GMT 0)
She will be good..and she will be on percoset and making big trouble for the sweet and innocent people like myself at the clinic...:>)
I am truely scared...hhehehe
Posted 1/30/2009 6:41 AM (GMT 0)
It must feel great to be so close to the end of treatment. Hopefully, Dawn's Mom will get though it with no problems and then with any luck it will be my turn.

I spoke to Ilene at Envita today and she said that BC/BS has been reimbursing between 30%-100% for treatment lately depending on the specific plan. I'm sure some plans do not reimburse for any of it. Anyway, she promised to get back to me with more information concerning my specific plan, Empire BC/BS PPO in NY. I'll post whatever information I'm given.
Posted 1/31/2009 12:17 AM (GMT 0)
I love Ilene. She has been so good to me...every step of the way. The staff has been like a family to me. I like it that they are very professional. But what has meant the most to me is how supportive and nice they have been to me.
Posted 1/31/2009 7:45 AM (GMT 0)
I'm a little confused on why they do the chest port if they are only giving you 6 weeks of IV. When I had IV antibiotics, they put a port in my arm that stayed in the whole time and a nurse changed the dressing around it every 3 days or so. The home care nurse inserted the port into my arm while I was in my house. Granted, this was quite a few years ago but it worked well.
Posted 1/31/2009 7:42 PM (GMT 0)
Because you can't take a pint of blood out of your arm everyday. I get a pint of blood taken a day for Ozone therapy. And then I get it put back in. Then I get all of the other meds inserted after that.
Two much traffic for the small viens in your arm. And my treatment started in Oct.
Posted 1/31/2009 10:11 PM (GMT 0)
Deb, Your offer is so kind. I hope Envita works out for you.

I'm really hoping it works out that I can go to Envita too. One way or another I plan on relocating to Scottsdale. I'm just not sure when exactly that will happen. I had plans in place to pack up and leave NY right after the New Year but finally realized I had been in complete denial about how sick I was and how little I'm capable of right now. I only found out last week that I was battling chronic lyme.

Marie, I hope you're enjoying your weekend off from treatments. You're so close to finish line. It's great to hear how well you've been treated at Envita but I'm sure your personality has a lot to do with it. I'm sure the staff and other patients are really going to miss you. lol

Too bad we weren't all going for treatment at the same time. We could have our own happy hour(s) with our IV's instead of martinis. lol
Posted 1/31/2009 10:28 PM (GMT 0)
ha....that is funny, happy hour. Gosh I need a barf bag now. lol
Enjoying my weekend. I wish. I am herxing out of my mind right now and the light of my lap top is killing my eyes. The maid is bothering me telling me to go out side. I would rather shoot myself...lol...kidding. I just wish she woud hurry up and get out of my room. So I can get back in my bed. Thank goodness she is changing the sheets everyday. I am wetting them every night. It is like I am sleeping in a steam room. Oh well...no pain no gain. And man this has been a pain.
I can be a pain too....lol.
I am not a happy girl today..so I will sign off before Alfers has to give me a spanking...lol..:>)
Posted 1/31/2009 10:32 PM (GMT 0)
Look at the bright side. We have known that we had lyme for 5 years now. And now due to us all being sick forever..they now have finally labeled us with Cronic Lyme. Which honestly the big guys like Shapiro and Sterre still tell the CDC and the USDA and the senate that is does not existe.
So Cronic Lyme..is all sort of BS. What they should just say simply, is that lyme is not easy to catch and it is not easy to cure and that they do not know what the hell they are doing.
Lets see them give a maleria patient 2 weeks of doxy for their infection. It is all BS.
Other than that...have a nice day.....:>)
Posted 1/31/2009 11:37 PM (GMT 0)
Marie, I'm sorry you're feeling so horrible.

I'm sure it's been said many times before but I would love to see how those so-called medical experts would handle it if they ended up getting chronic lyme and were severely affected and debilitated. I wouldn't doubt that a few of them have family members or friends being treated correctly behind closed doors. It's a crime and I just hope somehow justice is served and appropriate action is eventually taken for all the suffering they've caused, although I'm not holding my breath. It seems as if the slightest injustice to anyone is splashed across the news but this issue continues to be suppressed and basically ignored.
Posted 2/1/2009 12:02 AM (GMT 0)
Some of the best Dr.s out there are the ones who have gotten it themselves. I don't believe that the Dr.s that are all out there are not treating people to the best of their knowledge. And I don't think that any Dr.s go through years of medical school to watch people suffer. But I do think that our Gov. is trying to cover their ass for a big time screw up with plum island.
But I do hold Shaprio and Steere in the lowest regards because they know darn well that the information that they are feeding the New England Journal of Medicine which in turn sets the protical for most of the world....is false.
The problem is that by sticking their heads in the sand that the rest of the Dr.s who truely want to help people are being mis directed and mis informed, and being burned at the stake for treating outside of the guide lines.
Steer and Shapiro stood in front of our Senate and lied thier ass's off.
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