posted
Hello to everyone who has been involved in Lyme!
I am writing something on my experience with Lyme disease and want to include twenty tips on coping with Lyme disease.
If you have anything you would like to share I would love to benefit from your experience.
Anything from what different kinds of foods made symptoms worse to advice for handling a chronic illness emotionally and mentally would be great.
Sincerely, Katarina
[ 07. June 2006, 07:24 PM: Message edited by: katarina ]
Posts: 6 | From North Carolina | Registered: Jun 2006
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bettyg
Unregistered
posted
Katarina,
tip no. 1 ... editPENCIL icon your topic title to read, what copying w/lyme idease do you have? Hit enter for EDIT post.
Now, you;'ll get some posts.
1. Keep in touch with other lymies by registering to join this lymenet.org board where you can become educated about your lyme and get 24/7 SUPPORT as you need it.
2. Take it day by day; even hour to hour. Don't plan ahead a lot. Enjoy each day as you are able to.
3. For those NON-supportive of you including FAMILY and close friends, stay away from them if they do NOT support you. They will drag you down; we're down enough without them.
4. READ, READ, READ. Kowledge is power; it also helps us so we're up to date.
5. If you've had to quit work due to your lyme disease, make sure you have filed for SS diability insurance, SSI, or long term disability so these payments can help PAY THE BILLS.
ADDED: 6. If you don't believe a MD's diagnosis, keep pursuing by doing your homework coming to reputable health sites trying to discover what you might have you can pursue with the MD.
7. It took me 34 years to get correctly diagnosed. I DIDN'T GIVE UP; the squeaky wheel gets greased, and I got a lot of grease jobs.
I'll let others chime in with their ideas. Time to log off this am. Hope this is what you want or BE SPECIFIC in what you are looking for from us lymies ok.
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have to add one
- Having a cat by my side. They are always so loyal and loving. And they make life just better richer. They love you unconditionally always.
posted
Thanks so much betty and azure those are great tips! I completely agree with you about having an animal companion, I have a dog that keeps me company during the day and follows me everywhere which is nice especially when I need cheering up.
Posts: 6 | From North Carolina | Registered: Jun 2006
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posted
Betty, 34 years! Wow! I'm so sorry and I'm grateful to you for sharing.
I've been blessed in my experience; my entire family has had lyme except for my mom and my
mom's sister's family have all had or have lyme so I've had quite the support system. One of my
doctors thinks I was infected when I was three but fought it off until 4 years ago when symptoms
started showing themselves more obviously. I'm still fighting it and like everyone else I have
no idea how much longer I will have to keep fighting it but I'm generally better than I was 4
years ago and have decided to write down my experience before my brain mollifies it.
Thanks for the help, Katarina
[ 07. June 2006, 07:20 PM: Message edited by: katarina ]
Posts: 6 | From North Carolina | Registered: Jun 2006
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bettyg
Unregistered
posted
Katrina, I forgot to copy/paste some newbie sites here for you below.
Again, I would like to suggest you change your topic title & be specific. This board has 2-4 FULL screen fulls of posts daily.
Also, when you post, please use the enter button often and double space between EACH paragraph please for us neuro lymies to be able to read/comprehend. We thank you.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
I spent about two hours already on the first link which was for the most part stuff I had already experienced and info my doc had talked about but in much greater detail.
I can't believe I have never really explored Lyme, I was probably to sick to really get into it but thanks for the info and for welcoming a newbie.
Katarina
Posts: 6 | From North Carolina | Registered: Jun 2006
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posted
Here are some of my tips for coping with Lyme.
Avoid sunlight and other bright lights
Avoid stress
Allow yourself to do less
Don't eat sugar or grains, follow anti yeast diet
Do whatever you need to do to be more comfortable: Wear loose clothes, sleep propped up on pillows, get new handbag that doesn't hang on sore shoulders, wear gloves when hands get frozen, regardless of the weather, get big dark glasses, keep lots of hats in car...
Get online support (LymeNet) and take time to help others.
Detox everyday, Epsom Salt baths, podi patches, detox tea...
Allow extra time to get places.
Celebrate small progress
Keep a lyme journal to record progress. hats
Posts: 956 | From MA | Registered: Nov 2004
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posted
Thanks hatsnscarfs, I feel you on every one of those but why the anti-yeast diet?
Posts: 6 | From North Carolina | Registered: Jun 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Katarina,
My biggest piece of advice would be to get the very best Lyme doctor you can -- hopefully one who is Lyme-literate (an LLMD, as they're called here).
That, for me, has been the most important thing.
When I first got a sense of the cost of an out-of-network doctor, I started to balk and just find someone around my city who professes to know about Lyme. But something told me that was a bad idea.
I'm so glad now I didn't do that. My doctor doesn't know everything, but this is a complicated disease, and she's seen and treated a LOT of it.
The selection process wasn't easy or quick. I called almost all the doctors around here listed on the approved doctor's list. Checked to get a sense of how they treat then asked here for recommendations and red flags.
Hope this helps!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Hi Katarine, The anti yeast diet is primarily because the antibiotics kill off beneficial bacteria in the digestive tract and allow undesirables like yeast to grow out of control.
Yeast feeds on sugar. It is essential to cut back on sugars while taking antibiotics.
Additionally Lyme seems to love sugar. Eating sugar "feeds" the Lyme and increases symptoms. hats
Posts: 956 | From MA | Registered: Nov 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
loving yourself in every way you can and celebrating the VERY small victories!
For me NOT comparing myself to ANYONE else (or my healthy self) is my biggest challenge and if I could some day really do this I would be a much happier Lymie.
posted
Reach out to others as you are able. Call them, send cards to those who are ill. [and I don't just mean Lyme patients....anyone you know who is hurting or ill.]
The anti-yeast diet is HUGE. You will never know when you are well if you don't clear the yeast. Yeast symptoms mimic those of Lyme.
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