Please Wish Me Luck Today

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scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/4/2009 11:07 AM (GMT -6)   
I have my first appointment today with a lyme specialist on the upper west side in Manhattan.  I will not post his name but have heard great things about him, especially related to late stage neuro lyme.  Will let everyone know what he says when I'm up to posting again.   I'm so thankful that I found this group.  I'm not always up to posting but knowing others are here and unfortunately going through the same thing, helps tremendously.  Please wish me luck!

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 2/4/2009 11:40 AM (GMT -6)   
Hi Scorpio1960


Wishing you well and so glad that you finally have an appointment. Please let us know how you are doing and what you find out.

bcaring

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/4/2009 11:49 AM (GMT -6)   
Hi Scorpio 1960

I wish you all the best too!!! dorit

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/4/2009 12:08 PM (GMT -6)   
Thank you all so much. If I have any energy (or ability-lol) left when I get home tonight, I'll let you know what he tells me. I feel like I've been to hell and back (like most of you) and since coming to the realization that there's a 99% chance that I do have lyme, my mood swings from frightened to hopeful. Believe it or not it's the treatment and/or possible lack thereof that scares me the most. I was always a very strong person and pretty level headed, but all that's gone right out the window. lol I've turned into someone I no longer even recognize - physically, emotionally or mentally. The strength, determination and support of the members in this group makes me believe I will be able to get through this. The kindness and support shown here blows me away. Thanks.

Gracie's Mom - Is this doctor you go to?

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/5/2009 10:36 AM (GMT -6)   
I just want to say that the doctor I went to yesterday is wonderful. I managed to show up at his office one week early and he and his staff stayed late to accommodate me. He spent well over an hour with me and needless to say I know I'm in good hands. I'm very overwhelmed and now have to figure out a way to pay for the treatments but that's an entirely different story/post. lol I'm just so glad that I chose him out of the list of doctors I was given. As for showing up one week early, I guess it's obvious that I suffer from major brain fog. LOL I wrote down 2/4 several times but they assured me my appointment was not until next Wednesday. I could go and on about all the idiotic things I do and this is just one example of many. No matter how hard I try or how many times I double check things, sometimes (actually, most of the time), my brain malfunctions. Sometimes it's funny, sometimes it's very scary and other times it's very embarrassing. Oh well!

When I start the meds I'll post what I'm taking and how I'm doing.

Gracie's Mom - I told him you said hi! I sure hope he can save me.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 2/5/2009 10:45 AM (GMT -6)   
Hi scorpio 1960,

its wonderful news that you are in good hands !!! I am glad you found a doc you feel comfortable with.
greetings. dorit

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 2/5/2009 12:06 PM (GMT -6)   
It's great that you have a direction now for treatment.  Don't beat yourself up about "The Fog".  It's common for CFS/Fibro/Lyme people.
 
I went to a vitamin store a couple of days after my fisrt Herx.  I'd picked up several bottles and was carrying them around.  Then I was looking for DHEA (adreanl support).  I knew I'd seen a bottle.  I got the clerk to help look for it and my wife was looking too.  The clerk checked inventory - yep ... should be one left.  Finally i noticed that it was one of the bottles I'd been carrying around.
 
To make things work - when I checked out, the clerk gave me a brochure on their new super memory improving supplement   shocked
 
You're not alone.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/5/2009 12:49 PM (GMT -6)   
Thanks.

He upped the armour thyroid from 60 mg. to 120 mg.; started me on Zithromax 500mg. and will add Mino and Mepron on day 3. He is submitting IV Rocephin for 90 days to my insurance company. Said I will need at least 6 months but the insurance will probably only pay for 1 month.

Needless to say, I'm stressed, worried and need to come up with a game plan although there's none in sight. I'm not sure I can even afford the supplements recommended. Actually, I'm positive I can't afford all the supplements recommended. lol

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/5/2009 11:34 PM (GMT -6)   
Thank you all for your good wishes. I appreciate it so much and find it comforting to hear that others have heard good things about this doc. Now all I have to do is hit lotto and if I do I promise to help out those who need their meds. Boy have my priorities in life drastically changed.

If I had the funds I would consider going to Envita. The thought of getting it over with in six weeks instead of six months and having them deal with port, IV and meds instead of doing it myself is very enticing.

I'm still really freaked out about the PICC line but then I think about all the poor children who have bravely dealt with it and their wonderful Mom's who had to stand by and watch (and of course help). It makes me realize I need to buck up and get over it already.

Really, everyone here has been through so much and still manages to remain positive and so supportive of others. What a special group of people!

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 2/6/2009 12:03 AM (GMT -6)   
Scorpio,

The hype about infections and other risks of PICC lines are over-rated. It comes down to good line care. If you take good care of your line, there is little cause to worry. I was terrified the first time I had a PICC line (had it for about 3 1/2 weeks back in 2002), but I did fine with it and did not deal with any infections. My current PICC has been in place for more than 6 months and I have not had a single infection yet. I think initial insertion of the line is the worst part of the whole thing, and even that isn't too bad. You'll be fine.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/6/2009 10:48 AM (GMT -6)   
Thanks Razzle.
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