Doctor Debate: please offer advice

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WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/2/2009 4:33 PM (GMT -6)   
I have an appointment next week with a lyme MD that follows ILADS, but my general practioner wants me to see an infectious disease specialist who was the ex-president of IDSA.   Any advice?  Perhaps I should see both? 
 
Does anyone know a GOOD lyme doctor in Portland or Seattle?
Thanks

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/2/2009 7:26 PM (GMT -6)   
Hi WestCoastBabe,

Welcome to the forum! It is extremely important for you to see a Lyme Literate Medical Doctor. If you see a doctor that follows the IDSA guidelines, you will NOT get better. They believe that 21 days of antibiotics are enough and this just isn't true. Everyone is different and we should all be treated different. For a NEW infection, the timeframe for taking antibiotics should be at least six weeks. That's just for a new infection, not a chronic one. Also, the IDSA does not believe in chronic Lyme.

Here is some information for you to read. Please get yourself educated about this disease. Read everything you can because you have to be your own advocate with this disease.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Also, read the post at the top of the Lyme Forum titled, "New To Lyme?....Start Here!" There is some very helpful information there for you to read.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker at:
ko_@bellsouth.net 

If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 12/2/2009 11:07:00 PM (GMT-7)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 12/2/2009 11:21 PM (GMT -6)   
And you definitely want to see a doc who believes in chronic Lyme. I got lucky & my doc was convinced of chronic Lyme by me!!! AAAACK!!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 12/3/2009 5:42 AM (GMT -6)   
Hay WestCoastBabe,

I live near Seattle...email me if you want recommendations for Seattle area Lyme-Literate docs.

Cheers,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/3/2009 1:42 PM (GMT -6)   
Thanks! I have read everyting you suggested (and more). When I first started reading about lyme and the co-infections I thought FINALLY! THIS FITS! I was very excited at the prospect of getting a diagnosis... I actually wanted lyme. I know it sounds awful, but I just want a diagnosis so I can start treatment and get my life back.

But then I kept reading, and reading, and reading. And now, to be honest, I'm just scared and confused. I want a diagnosis, but if lyme is as difficult to treat as I'm reading and is so stigmatized, I really don't want it! Kuddos to all of you who are battling this disease!

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 12/3/2009 3:02 PM (GMT -6)   
Hi, I am from Oregon and have had a hard time finding close Drs. I have been to Connecticut and California. Would love to know what you find out. My email is in my personal info if you cllick on my name you can find it if you want to chat.


Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


yogamom2
Regular Member


Date Joined Nov 2009
Total Posts : 99
   Posted 12/3/2009 4:11 PM (GMT -6)   
Hi WestcoastBabe,

I am also from the Portland Oregon area. I have a great lyme literate Oriental medicine/naturalpath.

I was diagnosed last spring and went thought the same thing. Hurray! ... Uh oh..
Then I found out my kids and husband had it too. They are doing great on the treatment.

Hi Cajungrl

I would like to find a llmd in my area also. Should I email Ticker also?
My family and I have been enjoying my life without dairy gluten and soy for many years.

Found out about it in spring of 2009 that I have been living with Lyme for over 8 years. My symptoms of Lyme have been Mini-Strokes/TIA's, Hashimoto's disease, swelling of my liver and kidneys. Anaphylactic reactions to raw apples, raw carrots, and Beef. Allergies to dairy, gluten, and Soy.


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 12/3/2009 6:05 PM (GMT -6)   
Westcoast girl -

you said - When I first started reading about lyme and the co-infections I thought FINALLY! THIS FITS! I was very excited at the prospect of getting a diagnosis... I actually wanted lyme. I know it sounds awful, but I just want a diagnosis so I can start treatment and get my life back. But then I kept reading, and reading, and reading. And now, to be honest, I'm just scared and confused. I want a diagnosis, but if lyme is as difficult to treat as I'm reading and is so stigmatized, I really don't want it!

That is exactly how I felt. Exactly. Thanks for putting it so well!

Rose
I have Lyme; it doesn't have me.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 6:12 PM (GMT -6)   
yogamom,

Yes, you can email Ticker. Give her a few days to respond.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/5/2009 2:45 PM (GMT -6)   
WestCoastBabe,
Wow, your above post "Thanks! I have read everything..." could have been written by me, word for word, 4 months ago! That is EXACTLY how I felt, after 4 years with no diagnosis (with the only thing they were monitoring me for was even worse) and having seen at least 10 doctors - my primary care actually told me not to come back for any of these symptoms unless I get new ones!

We're all in this together! This forum has been extremely helpful to me. The only person I know who had Lyme's got treated immediately and was cured, so I have no one (in person) to ask questions, discuss it, or even just complain about this to! The doctor who diagnosed me and is treating me is very good, but readily admits she is not a Lyme's expert.

WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/7/2009 7:03 PM (GMT -6)   

Really Lyme -

I'll let you know how it goes.  My appointment is this Friday.

 

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