Topic: Need prayers....going thru that inflamed brain, etc stuff
kam
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posted
I hate this. STarted at 9ish am yesterday. Can't write much...need prayers and ned thsi to sop
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kam
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A bit better. Still very weak. I was able to get 2 tbsp of applesauce down me and a bit of water
When I go through these times, I wish I could think of a way to end this.
But, too sick to do so.
Not knowing what to do right by Rosie keeps me going too.
She hasn't give up on me yet.
So, need to focus on how to improve health.
No sure how to do that.
I have the thought since I have not been able to keep any pills down that perhaps it is time to stop taking pills.
But, I know i have tried that in the past and that didn't help either.
I know it is not good to be on abx ...the same abx since 2008 I think plus different abx from 2003 to 2008.
I do have a new doc I talked with. I am waiting for the detox pills to come in the mail.
Her plan is to do the detox stuff and then try the teaseal root for the bart
the in and out of consciousness has stopped.
The hot and cold stuff has stopped as long as I lay still
And I no longer have the runs...although I still have the diapers on as I still don't trust I will make it to the bathroom if the coughing thing starts up again.
Rosie needs to get out to toilet. I was able to take her to toilet via the power chair by the front door to pee.
She should be OK for a while. I usually take her out twice in the am...but she should be OK until around noon today.
Typng thsi is doing me in so got to stop. But, glad I am doing well enough to type it and take innventory of where I am
Body is shaking
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posted
Silver and I are thinking and praying for you right now.
Hang in hang on - and I'm not trying to be simplistic.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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nonna05
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posted
Kam, I'm so sorry to read that you are having such a rough time......
Hope Rosie can hang in there with the wait.
I'm sorry I don't know much of your story, but it sounds like you're in a very , very hard place.
Do you have anyone to help you at all??
When you say doctor ,do you mean LLMD????
My prayers are with you. May the Lord give you more strength today.. Fold His loving arms around you. Bless and keep you. May He give you and your body some healing , mighty healing , today and everyday from now to whole .
It's sounds like you need someone there to get some nutrition of some kind in you... can you call anybody?/ Even a neighbor or old friend.
My tears for me today are now shedding for you..
Nonna
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Dogsandcats
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posted
Sorry Kam - so glad you have Rosie. Those four legged friends keep us going.
Maggie May makes me laugh and I always know she is there with me.
May God shower you with His healing power. Calm your body, restore your strength, help you to take your meds and most of all - may you feel His presence through the dark times. He is always with you.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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kam
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posted
thx...11:00 am I was able to get dressed...first time to put on clean clothes in a while.
Not doing well enough to be around anyone....I think that is what set this off this time...I over did it and tend not to listen to my body when I am around others.
..then again..who knows.
I just know it is back to hiberating again
So my reaching out is via LN.
I am too sick to figure out a way to end this when I am like this.
Then, when the health improveds my brain doesn't even go there.
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sammy
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posted
Hugs Kam, I will pray for you today.
Having these fractured vertebrae and being so sick with Lyme at the same time, I've not been able to care for myself well. It's a humbling experience.
I'm feeling anxious because I'm having surgery tomorrow. Much needed surgery to fix some of the broken bones in my back.
I've often read your posts and thought to myself, you are so strong, living out there alone, having to care for Rosie too.
God bless you Kam, may he give you rest, comfort, strength, healing, and all that you need right now.
I'm glad your here on LN.
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kam
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you too Sammy
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kam
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posted
2 more hours then I am hoping to be able to take my sleeping med combo and get a good night's sleep tonight.
Hoping tomorrow I will be back to my routine with this.
Got to get up and get ice packs to help with the inflamed brain
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momindeep
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posted
Will be praying for you Kam.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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fflutterby
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posted
Oh Dear Kam, I wish I could come there and help you. I really do. Praying for you big time right now. May God take this inflammation down for you. You are a warrior !
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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just don
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posted
make sure you get the tramadol in you on time and it stays long enuf.
It can make you feel really bad,by quitting it too soon
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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kam
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posted
Having trouble keeping things down Don.
I ealized this am this is lasting so long this time and more intense due to being out of excedrin extra strength.
Even the imitrex for migraines does not help with this.
FB page for excedrin have posts from others that they too can't get the relief needed via generic excedrin.
Last I checked amazon was selling the box of excedrin 2pack for $100. It was $25.00 from Staples when they had in available.
Excedrin is supposed to be back on the shelves this summer.
I did sleep last night. I was able to get the slepping pill combo down.
I know that others are going through much worse.
it is just that something in the brain changes when this hits and I want out...
I loose track of time and instead of 48 hours of this or ? it seems like something I have lived with for years and I need to find a way to end it.
Good news is I am doing well enough to type this this am.
Not looking forward to the pressure building again.
Took the pain med and the generic excedrin from rite aid someone sent me.
So far it has stayed down this am but when the pressure starts building...hate this
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kam
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thx flutterby and mom
just touching base so I don't go over the edge
not that I am doing well enough to even think of a way to end this...just need to get through it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
it seems like this started fri morn..not sure how long it has been
This is monday right?
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kam
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posted
OK. Able to pick up Rosie's poop around the apartment grounds.
When, well, I take her off grouonds to toilet.
WE are not to allow dogs to do their business on grounds.
times like this, I wish I had a yard for her.
Glad I was able to pick up after her. That did me in.
Resting now.
Had some canned peached and am trying to eat GF toast now.
If that works, I will try and take meds and supplements.
any movement makes me worse. So stil need to take things slow and lay ow
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posted
Do you have an aspirin on hand?? Anything that keeps inflammation down??
It's Monday .. late morning.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
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posted
I'll try the tylenol too.
I think I need a green hat to wear....I could put it on when lyme is beating me down
...It would be a notice to my neighbors to stay clear of me...talking is out....stopping to pet Rosie is out
..I am out just to toilet Rosie...bug off
...I am feeling too green to visit
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kam
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Teh past few days, I have had several people (neighbors) ask me if they could pet Rosie.
I told all of them that I wasn't doing well enough and no.
But, I guess they can't hear as they ignored me.
I didn't bother to be polite but kept going.
One even blocked my way in her power chair so she could pet Rosie after I said no.
I have neighbors here who aren't playing with a full deck...so don't take it personally...
I am not playing with a fulll deck most of the time either
I think having something visual would help...
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
BLAHHH THE SHAKES! I know them well, that's when it's really bad. I pray you will recover your happiness, your health and your will to live.
What really helped me with the shakes is 4 -5 capsules of gaia herbs japanese knotwed(resveratrol) chased with a glass of water with 30-40 drops of wormwood tincture. You can feel the shakes quieting within 30 minutes.
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momindeep
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posted
Still praying for you Kam. Hang on.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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kam
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posted
thx
Able to get some food down me yesterday....canned peaches, 1/2 can of veggie chili and then the other half later in the day
Still very weak...but understandable
Watched I bought a zoo last night from netflix
Thinking of spar this am. A tiger they put down because he was old, tired and hurting.
I really think we as humans need that option.
I understand why it is difficult to draw up the rules for that one.
And we do have the option. We call it suicide.
but, putting someone down because they are suffering and getting well is not in the picture sounds so much more humane.
We do it to our dogs. Why not humans.
Don't have what it takes deal with such a controvesary subject.
But, I would like to know what the stats are for people who do get well from this, who remain the smae or what is the 3rd option?
I recall reading what a doc who teats those with Myasthenia Gravis said..or was it another label.
I had many lables thrown at me when this first hit.
I recall he said that 1/3 recovered their health and went into remission
1/3 something which I forget
and 1/3 something else which I forget.
he did believe in time that their would be a way to have all go into remission
Too weak now to continue.
Need to veg.
I just might have some excedrin coming
Could it be that I went down the rabbit hole because I have not had those 2 pills to take each morning that help me be able to do a little something most days??
Weird...but could be true.
At least I am doing well enough to watch movies again.
I do need to work on getting more food in me today.
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kam
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I also woke up without the pain in my brain this am. head is not clear body is not well.
but, those are normal parts of living with this.
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lyme in Putnam
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Im so sorry kam, it's so hard when it's everyday.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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You're in my thoughts and prayers........
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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kam
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posted
Need prayers again. It has started back up again.
Not sure why this is happening. Hoping it does not last as long as it did last time.
the only thing I can think of is I am no longer taking excedrin daily.
That is the only change.
What use to cost $25 for a box of 2 pills in a packet is now selling on ebay or amazon for $100.
Not good.
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kam
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At one time excedrin said they would have the product back on the shelves this summer on FB.
Now, they are saying they are working tirelessly to get it back on the shelves but dont' know when.
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kam
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posted
Still have the inflamed brain. Still not eating or taking any meds or supps due to not being able to keep anythign down.
Wondering if taking the 2 drops of glutathione, teaseal root and similx set things off again after Iw as starting to come back on Wed night.
Took 5 drops fo glutathione on Thurs hoping it wouldl help with the inflamed brain but it didn't.
Not sure how to get back to lyme normal except to just wait it out
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kam
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8 days now of the inflamed brain
Oen of those days I was able to watch a movie
But, back tonot being able to be on th comptuer or watch a movei
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kam
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posted
going to ask new lyme doc about this
old lyme doc would just ask me why i thought it happened
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kam
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So, praying that this lets up soon and I can slowly start to get food in me again, sleep at night with the help of sleeping pill combo and get back to taking meds and supps.
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kam
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I'd also like to take a shower
Doing well enough this am to put the fill the ice trays and get them in the frig so I will have ice packs to put on the brain
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-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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kam
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Almost 4 pm and the pain is still gone. I just need to build my strength back now...a little food here and there and hopefuly back to taking meds/supps tomorrow if able to swallow.
Last Wed it let up. But, I woke up Thursday morning with it back again...so hoping it stays gone this time.
I don't understand why 2 small pills of excedrin help..but they make life so much more do able
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fflutterby
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So glad you found some relief !! Still praying for you Kam
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kam
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I think it was $20 for the 5 packets....so hoping that the bottles are back on the shelf soon.
That is only 5 days worth.
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kam
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i bid on a couple of others...it was the whole box of 2 packs but thankfully i was outbid
They ended up being about $100 each
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kam
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Hurray. Keyboard was not working this am for some reason and my brain and body were not working.
Took 2 excedrin and able to figure things out. Weird.
Still got a bit of pain in the brain but hoping as the excedrin kicks in it will not be all encompassing.
Weird that just 2 excedrin make a difference.
But, good to find something that works.
I am still very weak so hoping once I get back on the meds/supps and more food in me I will get back to lyme normal.
I am still thinking that they shot horses don't they or put dogs down or the animals in the zoo when they are hurting and too sick to recover.
Why not people.
So I appreciate your prayers while I go through this time until I am back to lyme normal and able to do a little bit.
Every time I go through that inflamed pain thing I think this is the last time I am going through this.
I am not going to do this again. Then the checmistry changes in the brain and I have my fight back.
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kam
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OK. Crisis over I hope
Able to eat this am and take meds and supps
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momindeep
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So good to hear Kam...I will continue to pray for you though. Ask the Lord to keep you close and that you will find some more Excedrin.
Is Excedrin sold no where? I looked for it in my little town and was wondering if you can still run across it sometimes?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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kam
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Difficult for me to believe that two little pills make such a big difference in my life.
Just took 2 excedrin and waiting for it to kick in.
Then hoping to be able to a bit this am.
I do need to decide what to do about getting more.
It seems my options are to pay $80 to $100 for a box of the two pills in a packet. (Which I don't feel I have the funds for.)
Or pay $20 for 5 of the two packets which would only last 5 days if all goes well.
Sometimes I need to take more excedrin to bring the inflamed brain down during the day.
Or maybe try another generic form although I have tried several in the past and they did not help.
Even different kinds of excedrin in the past did not help....only the extra strength.
I am hoping that excedrin will be back on the shelves soon. it was suppose to be back this summer.
but, the FB page for excedrin says they are sorry it is not back yet and are doing what they can to get the products back on the shelves.
It has been since January.
I don't think it was the excedrin alone that keeps me from having the inflamed brain.
I have gone through times before of the inflamed brain.
it just seems the excedrin helps get rid of it faster.
As I am typing this, it has helped me think. I will order the CVS generic brand and see if that works.
Some posted on the FB excedrin page that it helped them. Others like me have said that the gneric brands did not help them.
It is worth a try. $10 vs $100
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kam
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I can't go back and read what I wrote. But, the thing that scares me the most with the inflamed brain is the brain changes too.
Death seems to be the only solution at the time and I loose track of reality.
It seems I have been living in the pain since this hit in 2001 every day and it is time to end it.
I dont' ever want to go through that again.
Then, the brain changes back and I have my fight back.
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posted
Kam, I didn't know extra strength Excedrin was so hard to get. I used to use it all of the time but haven't looked for it recently.
The only thing that helps me with brain inflammation is RX Klonopin.
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kam
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posted
I will add that to my list of things to ask the primary doc when I see her next. Thx
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