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» LymeNet Flash » Questions and Discussion » Medical Questions » new to lyme...many questions!

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Author Topic: new to lyme...many questions!
blackbirdsings
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Some people urged me to come to this forum for more info. I have been feeling bad for years, but especially this year. Hardly able to function and have been put through some pretty horrible tests this summer to rule things out. It has come back to lyme and the doctor agreed to try me on doxy and if I am improve, get me to a lyme dr. All of my symptoms went away when I was on a small dose last year. I am improving on this med, am able to get out of bed, and function some.

We are trying to get me in with the dr in NC, but there seems to be a long wait there.

Do any of you have edema? Do you eat yogurt to prevent problems from being on an antibiotic so much? If so how often, etc? Do you all have pain problems and if so how are they controlled?

I have horrible pain and now have an injury. I now wonder how much of it is from lyme, and wonder if there is anything I can take to prevent the stuff from attacking more of my body.

I have more questions, but am new to this, and will write more later when I have my thoughts more together. Thanks in advance!

Posts: 114 | From USA | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
Starphoenix
Frequent Contributor (1K+ posts)
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Hi, Blackbird! Welcome to the forum. I hope you find it as helpful as I have. There's a supportive community here. [group hug] You can learn so much, and then help others, too!

Did you see the link at the top of the list? It's a page for "newbies," and it is exhaustive! I think you'll find answers to your questions there for sure.

I hope you keep coming back!

Steph

--------------------
Learning to love, and loving to learn.

Posts: 1318 | From Shohola, PA | Registered: Apr 2002  |  IP: Logged | Report this post to a Moderator
shassler64
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Hi and Welcome!
Sorry to hear you are so sick.I feel you should post on the seeking a doctor section of this site so you get some names of some good Lyme Disease Literate Doctors (LLMD's) in your area.

Read as much as you can from the Newbie's information.Get yourself to a Lyme doc ASAP.Keep taking the doxy( 400mg a day) if you can stomach it and acidophilis capules not just yoghurt.The capsules are better.I don't know what the best brand is over there as I am in Australia.

Don't take steroids for anything as they make lyme worse.

Treat the symptoms as best you can with pain meds,sleep meds etc to help you cope.

Take care,Sue from Downunder.

Posts: 801 | From Kiama,Australia | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Hi blackbird! WELCOME!

As for the yogurt....I've found that most yogurt is full of sugar. Read the labels. The lowest sugar content I've found is the Blue Bunny low carb brand.

It's better to just take acidolphilus to prevent the problems. I have problems with yeast even if I eat the low carb yogurt...so just go with the acidolph.

Here are some links for you.

Treepatrol's links
http://flash.lymenet.org/ubb/Forum5/HTML/000569.html

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. B's Guidelines
http://www.ilads.org/burrascano_1102.htm

Western Blot explanation:
http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme
http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info:
http://www.ILADS.org/

Camp A and Camp B
http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Lyme Wars
http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info
http://www.lymeinfo.net/support.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories
http://flash.lymenet.org/ubb/Forum1/HTML/022173.html


http://www.anapsid.org/lyme/matthewgoss/index.html

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
blackbirdsings
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Steph-Thank you for the welcome. I am already finding this group to be a HUGE help! The "newbies" info. is keeping me very busy...It's taking me time to go through all of it...

Sue-Acidopholis is now on the list of things to get today!
Lymetoo-The links were a huge help, I now know what to get. Why don't doctors tell us this stuff up front?
We are having a hard time finding me a lyme dr. There are three month waits, and I don't have a good feeling about having to wait that long...just doing too bad. I need the pain meds, but the area I am in is very against them due to a gov't crackdown on this part of the state...all due to one doozy dr. Very frustrating to not be able to get all the help you need when you hurt so much and are so sick. The pain gets bad in the wee hours of the am/night..than I am unable to sleep or get comfortable due to pain. It's a vicious cycle.

Thank you for the welcomes and support!

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NP40
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Try a hot bath in epsom salts, then drink warm water with a squeeze of lemon while in the tub. Of course, family members will think you've gone completely over the edge, but it really helped my son's pain.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
cgooge
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To answer one of your questions: My wife does have pitting edema in her legs.

Her bath includes epsom salt and hydrogen peroxide(3%). Only do this right before bed cause it zaps what little energy she has left.

Posts: 82 | From Summerville, SC | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
bettyg
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Maybe I missed this, have you tried the SUPPORT GROUP section on the LEFT side column?

Look for your state and then call or email a support group leader for a good LLMD near you.

Best wishes; you came to the right group.

On Treepatrol's newbie links, print it off, & check off as you read as there are MANY months of reading there. Read only the certain things you are interested in now...priority only.

bettyg

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blackbirdsings
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I just got sent a few names of drs in my state but I also hear it is better to go out of state...people haven't had good results here, but now I am hearing some have had good ones. WIll try and see where I can get in and go from there.

We are out of epson salts, I used kosher salt...My legs got a funny sesation and than it went away...kinda like a bubble, crawly feeling from my knees down. Will get the epson salts tomorrow and try it when I can really rest if it is rough on me.

Thanks everybody!

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WildCondor
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Welcome! You will find alot of helpful information here. This place is a tremedous resource. Alos, email me if you need any help, or need help finding a doctor.
[email protected]

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blackbirdsings
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Thanks, I just sent you an email with a few questions.
Posts: 114 | From USA | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
WildCondor
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Hey!
I have along email I typed to you and it got bounced back to me through aol....Email me again..actually I'll post it hre in private messages. [Smile]

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Boomerang
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What was the news, Condor?

I've checked the Support Groups on the sidebar, and they aren't very helpful to me. Tennessee person doesn't answer the email addy.

Kentucky doesn't even have an email address.

No support groups for these states?

Welcome Blackbird!

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Aniek
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Welcome!

Yogurt can be good, in conjunction with other probiotiotics. The trick is that you want plain yogurt. Any of the flavored yogurts will have sugar or artificial sweeteners. You also want the whole milk yogurt, because the low fat replaces the fat with sugars/carbs. Following a no sugar and low-carb diet helps prevent yeast problems.

--------------------
"When there is pain, there are no words." - Toni Morrison

Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
   

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