I have been dealing with lyme since 01, and just got dxed this month by my LLMD with lyme and the co-infections.
I have my second appointment to discusse treatment, and I am really scared of the unknown.
Can anyone clue me in on what to expect, so I won't be so scared.
Thanks Posted by treepatrol (Member # 4117) on :
Lots of abx's antibiotics and lots of ups and downs also possible herxing effect. HI and welcome . Read Newbie links lots of info.
Posted by mtree (Member # 14305) on :
hey.....welcome...
im new to the website....but not new to Lyme. the newbie link is great.....but don't get to overwelmed by it.....great information though. having a great doctor is half the battle i think...... and yes treepatrol is right you may have a herx reaction...(symptoms get worse)....talk to your doctor about that..........its a good thing.... good luck with your appointment.....let us know how you make out..... have an easy symptom free day..... mtree
Posted by Earl Lickya (Member # 14279) on :
Treatment can make you feel worse but it's a typically good sign that the buggers are getting killed and releasing toxins. You'll likely receive various combos of abx to treat LD and coinfections and you may feel worse before you start getting better.
Try not to get depressed, take solace in knowing this disease is treatable.
This place is a great resource for info but it can also bring you down. There a lots of very sick folks fighting the battle & they need everyone's support.
Recognize that there are likely thousands of people out there that have been diagnosed in various stages, treated, and returned to living a normal life. I personnaly know a few . .
Unfortunatley, very few come here to spread good news.
Don't lose hope! a positive attitude and healthy lifestyle go a long way.
Posted by mtree (Member # 14305) on :
ditto on what earl lickya said.....
although i don't really know anyone personaly that has it or is in remission. thats why i jumped on this website....... and yes you can get better......i was in remission for years.....
again don't get too overwhelmed...... ...all kinds of people......all kinds of stories..... it is helpful to know that there are people out there that are going through the same daily....everyday stuff.........or did go through it...... good wishes to you, mtree Posted by justag (Member # 11145) on :
this is a long road, I'm scared too...also need support Posted by mtree (Member # 14305) on :
...justag.... you got it....(support)..... it is a long road......dosen't have to be a lonely one......even though it always feels that way........ keep pushing.....have a better day...
mtree
Posted by justag (Member # 11145) on :
mtree, thank you for your reply and support...hope you feel better too!
I felt ok for a long while (I guess in remission?) and this Month started to feel worse and worse on a speed that I can't believe! I'll start IV next week and hope I'm in a better shape soon.
Have a nice weekend, justag
Posted by 1Bitten2XShy (Member # 12280) on :
Brenda-Lee
Are you seeing a LLMD here in Florida, or did you travel out of state?
The first few months are pretty rough, generally speaking...but it does get better. Just hang tough!
Posted by Geneal (Member # 10375) on :
Dear Justag,
Welcome aboard .
It is an overwhelming amount of information.
Especially if you aren't thinking clearly.
Try to read the newbie links. Print out ones that really interest you
So you can easily reference them.
Be kind to yourself. You are in for a bumpy ride.
In order to get to the other side, you have to go through it.
Know that you will always find a shoulder to cry on, a place to vent,
Friends who understand what you are going through,
And more here on Lymenet.
It is hard to imagine you may actually get or feel worse
When herxing, but don't let that scare you.
It just means you are killing those ketes!
Sending you hugs to let you know that you are definitely not alone.
Geneal
Posted by kbholley (Member # 12938) on :
1Bitten2XShy:
My LLMD is located in the northern part of South Carolina, it is a 9 1/2 hour drive
The drive alone is exhausting, but I get to spend that time with my hubby and kids.
mtree: I read the newbie page when I first came on lymenet, and got confused.
So I figured that I would post the question and let yall help calm my fears. Because alot of yall have been where I was.
I am in what my doctor said was Late Stage Lyme / Cronic.
Thank you for all of your support, Yall are helping me keep sane , well as sane as I can get right now.
Smiles Posted by mtree (Member # 14305) on :
....kbholley.....I agree if you have a question or need encourgment ......just ask... the site has so much information....so much to read........and if your not feeling well......yikes.....it can make ya sick. so sorry you have to travel so far to be treated.....but glad your being treated and that your positive in thinking that the drive is some family time........our families suffer as well in different ways...... i know our spouses need just as much support.
....and ya sound sane to me have a good one..... mtree
Posted by kbholley (Member # 12938) on :
Good, because it takes me forever to type a post, I try to check the spelling along the way.
But, somedays I'm the rock but most days I'm the window. I fall to pieces. Posted by bettyg (Member # 6147) on :
kb, i sent you a private message, be sure to read it ok! thx Posted by 1Bitten2XShy (Member # 12280) on :
Brenda-Lee
I am glad you have a LLMD. If the drive just becomes too much etc., please let me know. There is a wonderful LLMD here in Florida that I personally have seen work some true miracles!
Wishing you better days
Posted by kbholley (Member # 12938) on :
My LLMD is in SC and his point of contact GP (that is Lyme Literate)is in Tallahassee. So if I have any problems that need to be addressed ASAP, I go to him.
I am just really scared.
What is "Herxing" and PICC Lines.
I was told by the GP Dr. M that I would possibly be put on IV's and I have the option of a PICC Line, or go in every 4th day to have an IV put in or taken out, like the ones that are used in the hospital for surgeries.
Which is better, the PICC Line or the reg. IV?
Posted by mtree (Member # 14305) on :
kbholley-
i to am scared.....if that helps...... how could you not be.....it is all so overwhelming.....and it hurts physicaly and emotionaly....you don't even have to tell me ...of what....i know.....try not to be scared.....but shareing your feelings getting them out really help ........so keep it coming if you want.... this site is very helpful.....when i was first dx (1990) this was not avaliable.....the computer and all.....no support groups....(nobody felt well enough to make them) so take advantage of this site........ something that has always helped me and i try so hard to do is leave the worrying at my doctors office.....you really have to talk with your doctor.....or doctors......i always bring a list of questions.....always.. ...then i go home.....do what i am supposed to do and try to have some sort of life and not let this disease take it over....consume me as a person.....
i eventually went on a picc line and hated it at first but the poking every few days.....ouch....it depends how long you will be on it......you realy have to trust your doctor and what he /she recommends doing. either way take it as a positive thing the IV......hopefully it will make you feel better....
have a good day mtree
Posted by MaryL (Member # 11997) on :
kb. Just wanted you to hear from someone who has gotten significantly better.
It's been about 3 1/2 years of treatment, but I am 85-90% better & I feel pretty good! It is possible, it's just that a lot of people who recover don't seek out support.
My 11-year old still is struggling with Lyme, but has finally had a turn-around after a year on IVs. It took a while to find the right one/combination.
A couple months after I'd given up getting better & finally applied for disability, I am back to work part-time! Hang in there. It's very possible, it's just a difficult journey.
Posted by MaryL (Member # 11997) on :
kb-saw your later post about the PICC lines after I replied.
A PICC line will go in your arm & can stay in place for weeks to months. Good for long-term treatment. Mine was in place for 4 months. It beats getting stuck repeatedly. Showering can be a little tricky 'cause you have to cover the site & you have to watch for signs of infection at the site.
A better central line option for longer term treatment is a Groshong catheter. It goes in your chest & has less likelihood of infection. My 11 year old has a Groshong. It's been in place for a year. Showering with a Groshong is no problem.
One difference in the PICC & the Groshong is the cost to put it in. The Groshong is more expensive & has to be done in the hospital. The PICC can be put in by a nurse.
Any other ???? I'm on here every couple days, just not daily - be glad to talk.
Posted by mtree (Member # 14305) on :
...... i too have been in remission.....was treated for about 7ish years......Iv's.....orals...... but I was symptom free for about 7-8ish years..... went back to work part-time was haveing a good run..... you really can get better........really. I have been there....and know i will be there again...... it is a difficult journey..... but if i could get better after being so sick for years.....it is possible to be treated and get better...... mtree
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