kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am having a set back. I once again am waking up feeling like a truck ran me over.
I also am almost to place where I might need to use power chair in the apartment.
I really miss being able to be on the trail for 10 or 20 min each day.
WEakness is like it once was. I think twice about picking something up off the floor again..sometimes it stays there for a few days until I have what it takes to pick it up.
Hoping you will help me figure things out as to why I am having the set back.
I will be talking with LLMD this week.
1. I ran out of ketek about a month ago. REally went down hill quickly at first
2. Ran out of other abx too.
3. Ran out of lunesta and insurance would not provide for it so trying other things to help me sleep. (Sleep issue has only been a week or so)
4. Stopped water therapy..waiting to see if insurance will approve more. They denied it the first time around.
But, water therapy was stopped long before I ran out of the ketek.
5. I also do not have the help with household chores I once had. HOurs have been cut back to 3 hours a month. (thankfully, my brain and arms are still talking to each other so I am able to do a little myself now which is a good thing..but am in a lot of pain while trying to do things)
6. Started taking diflucan one pill a day a couple of weeks ago I think as prescribed by primary doc who is not lyme literate but was concerned with long use of abx so prescribed the diflucan.
I too wanted to take the diflucan as I thought valley fever might be part of the problem...but know i know it must not be because I am going down hill instead of improving.
I am guessing it is due to being off abx. But, wanted to see what you all thought as I know others in my state support group are also struggling right now...weather?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh Kam.. Darn.
I can't be sure.. but I would think the disconntinuation of antibiotics might be involved here?
As well as the discontinuation of your other meds.
I am not sure why you are out of meds.. but if it is because you are waiting for insurance..
Please remember Wal-Mart has that prescription plan... any of the meds on the list (some generic) are only $4.00 per month total.
Even some folks with insurance pay higher than that because of their deductibles.. so do consider checking into it. The list changes so do check it out.
Income isn't a factor... and their plan has literally saved the lives for some folks I know.
Keep us up to date on your situation and do lettuce no if we can help.
posted
Your setback may be due to the Diflucan. Anytime I take it longer than a week, I get very sick. Just a thought.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
| IP: Logged |
posted
Yes, the Diflucan could be causing a lot of die-off of yeast you didn't know you had. Can you try taking one every 2 or 3 days?
Did you also run out of Xango for a few days? ( I know you just received your shipment. )
HUGS!! I hope you can get back on some abx soon!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I also have had teflon brain lately. The idea of stopping the diflucan did pop in my mind but then it popped right back out.
Now, I will stop it and see if that helps.
I want to be able to take in what the doc says to me when he calls.
I also want to be able to have a decent coversation on my end as far as answering questions.
I do believe being without the 3 different types of abx caused the first set back. Then, I adjusted to it.
Now, I am thinking the diflucan is causing the second set back.
The every 2 or 3 days sounds good. I think I will stop it until I talk with the LLMD so I will be in better shape..hopefully.
I would do much better if I were able to chat on line with him. I think.
I use to have a TDDY (sp?) when I was a deaf ed graduate. I never considered it would come in handy years later for lyme.
thanks again for the ideas of getting meds TC
I am going to tell him just to prescribe what he wants me to take and I will look into the different programs to getting the prescription filled.
it has been a case of lets see if the insurance will aprove this...no..
OK..lets see about this one...
no..OK try this one
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I did not but was close to running out of the xango. It came just in time.
I was thinking about it as I thought the supplements and xango was a big part of the picture of things improving.
My brain is still talking to my arms which is good. I can use a knife in the kitchen and be OK as long as I give myself lots of down time still.
I know if I do not have Rosie or the power chair or the car, or the computer, or the TV, or the help, or the headset for the phone, I go down hill fast too.
Many pieces to this puzzle of getting well.
I figured the supplements and xango are the same. It is a piece of the puzzle to getting well.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I stopped the diflucan and am doing better today. I still woke up feeling like a truck ran me over and in too much discomfort to lie in bed this am.
Getting out of bed was a chore too.
But, I took 2 excedrin and was able to take a shower, fix breakfast, feed the dog, take the dog to the dog park to toilet, and drive to church to attend my first Crown Money management class.
I also was able to do the homework before class...at least some of it.
And I was able to say the verse my memory.
And I was able to put makeup on this am and earrings.
I look so much better with a little paint on.
The class was 2 hours. I used my lafuma recliner in the class. I was so thankful I was able to be in the recliner for 2 hours. I was not even aware it had been that long.
I put the harness on Rosie and was able to walk in and out of the class with her help.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good grief KAM!
You sound almost like superwoman today! You did more in the morning than I've done in three days!
Good for you! Bet it felt good to get out and accomplish so much.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Glad today was better!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Yep. It was a most unusual day TC !
thanks California Lyme. Hoping tomorrow will be a good day too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
bettyg
Unregistered
posted
kam, I'm late in replying here. Wow, murphy's law hit you; so sorry.
a good day; HOORAY for you and Rosie! hope tomorrow and rest of week are too.
I have a picker up stick; 2 in fact; dropping things constantly, and it's great picking up my popcorn kernels/seeds that fall on floor by my pc!
IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Betty, It pops in my head to get one of those..especially when I am at the grocery store and it is such a struggle to get the small basket taht is on my lap in the power chair to the floor and then stand up and try and get whatever it is I am trying to get and then lift and then put it in the basket and then sit back down in the chair and then lift the basket back on my lap.
..There are many times I haven't gotten what I wanted because the effort is just too much.
If someone is close by I will ask for help.
And the people working at the store always come by and ask if I need and help to let them know.
But, I am trying to keep as much of my independence as possible.
And I do have times, when I am fine.
So, thanks for reminding me about the pick up stick. I saw one when I first moved here at Walgreen's.
I even have a gift certificate for I think $20 at Walgreen's.
Now, if I can just get the strength to drive over there and walk in and get one...or perhaps even call them and have them bring to me in the car.
Just thought of that one. They even have a drive up. I could try that one first.
RE: All I did yesterday. I was not normal when I did these things. EVerythign was a challenge and put stress on the body.
Even sitting in the lafuma recliner. My body was shaking inside. The lafuma recliner does not support my body like my easy boy recliner.
But, the big picture was I was able to do these things. There are times when I can't..most of the time.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
bettyg
Unregistered
posted
kam, good you have a gift certficate to use and can drive to store for PICK UP DELIVERY!!
when I had my complete hip surgery, hospital offered to sell each of us a package of 6 items for $30:
pick up stick, long handled shoe horn, sock TAKE IT OFFER, sock put her on, special shoelaces, a long handled back scratcher; I may have forgotten something. but that was a steel $30.
my 1st pick up stick alone was $20 plus dollars! so a group thing made it cost effective. good luck getting yours.
kam, i kept dropping mine too. so my 1 physical therapist put a long coard on there ATTACHED to stick so if it dropped, I would real it in like a FISH!
IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Monday was a low functioning day and last night ...little to no sleep...Sunday night...little to no sleep, Tuesday...is not looking very good at the moment.
Have telephone consult with lyme doc in about 6 min.
Driving is out right now. But, will add gettting the pick up tool to to do board so when I am doing better I will not forget
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've seen some strong reactions from posters on difulan. It probably didn't help your body deal with the addition when you had stopped doing some of the good things for your body.
Kam, I know sometimes it feels like two steps forward and three steps back. It's so frustrating. But weller periods can get longer and longer with every little elimination of toxic crap along the way.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Yep. The big picture is I am doing so much better than 3 months ago.
It is 11:00 and I had an 8:45 telephone consult with lyme doc...NO call.
Called the office and no one in the office although it said that someone would be there from 9 am M through Friday.
I wonder about the new office staff. I have left several message that have gone unanswered re: needing abx.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Kam,
You sure have been through the mill. I do hope your doctor gets back to you. Not getting call backs can sure make us anxious.
I too and doing the ups and downs so can definitely relate. I think we just crash harder when we THINK we are doing better and then wham... find ourselves thinking we are going backwards.
Do keep us posted and let us know how you are and what your doctor says when you hear back.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
I hope you can get back on some abx soon!![[Smile]](smile.gif)
![[lol]](graemlins/lol.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic