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lckymom311 Posts: 65
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and i am starting to feel worse. I know dont get the pred shot when you have Lyme i wont ever again i promise! My muscles feel like they just cant go on, shaky and sore and tired, brain fog well thats everyday, but my hands and feet feel swollen hard to move and im sooooo tired. Dragging butt today mostly because of the muscles, my dr has me on darvaset during the day and zoma at night and well the pain level is now a 7 instead of a 9 so i guess thats good but i feel like crap! Any suggestions on what to tell my dr to do because after the pred shot i realize he too doesnt know enough and he honestly is trying to help me keep comfy (impossible i know) till i get referred out to an llmd. All i know is my 2 kids want me to be present and i am seriously struggling to keep my head above water, feels like im never gonna start treatment. Sounds weird to wanna go threw the herxing and all that but ive been sick for as long as i can remember and i wanna keep moving fwd.  |
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TaraT Posts: 4164
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I completely understand where you are coming from. I recently looked up some pics online of bartonella rashes and I distinctively remember having these around 10 11 and 12 years of age.. I haven't been diagnosed yet but am positive I have lyme and bartonella at least. I am SO ready to get started on treatment! With Him we "live" no matter the circumstances. At His feet peace of mind can be found. Peace that passes all understanding is my quest now and forever.
Numbers 6:24-26
"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace." |
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lckymom311 Posts: 65
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i know! i dont know if its the frontal lobe damage Lyme causes, but i feel like im starting to crack. Literally fall apart, and im frustrated. |
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cmany Posts: 6205
Group Leader
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If you are on abx you NEED to up the dosing...double it at least... If you are not - then you need to get on them...I know that it will be hard to convince the doc to do this...but There is research... http://www.lymeneteurope.org/info/11th-international-
research-conference This isnt what I was looking for - but the principle is the same... But what steroids does is suppress the immune system - so we dont produce antibodies correctly - and at the same time it stimulates the spirochetes into replicating...so doubling the abx doseage gives you a better chance at killing more of them... [b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid |
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Julie4848
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Nothing against what Cmany is saying whatsoever, but I doubled my abx once (without checking with my Dr.) and and ended up in the ER for a day, so please check with your Dr. Don't want what happed to me to happen to you, it sucked big time. |
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fluffyluggage Posts: 4723
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Hi Ickymom, I can just tell you that you need to remember to take time out for yourself. IDK what you had pred shots for, but I had pred shots for terrible rashes that no one could figure out why I had ages ago. It was probably about 10-ish years ago, and I've had Lyme 15 years at least. I'm pretty darn sure now that the rashes were some sort of strange Bart or Lyme rashes (cuz I'm pretty sure I have Bart, Babs, and maybe even Ehrlichia), but at the time, no one considered it. At any rate, the stress you are dealing with will make you sicker if you let it. So, remember to breathe, relax, and do as much as you can to handle that stress. Don't forget the kids, but when they nap or when they sleep at night, be sure to de-stress yourself, so you DON'T crack! It's super-important. I'm not taking ab's now, but I was for a year--it got me 40% better. There's always hope, so remember that, but remember, too, that you HAVE to take care of yourself, cuz no one else will! And you're probably the glue that holds your family together. Remember we're all here for you. I kinda come and go, but this forum will always be here! Hugs, jen  Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help. I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.
Something has changed within me/Something is not the same/I'm through with playing by/The rules of someone else's game/Too late for second-guessing/Too late to go back to sleep/It's time to trust my instincts/Close my eyes and leap...I'm through accepting limits/Cuz someone says they're so/Some things I can not change/But till I try I'll never know/Too long I've been afraid of/Losing love I guess I lost/Well if that's love/It comes at much too high a cost/I'd sooner buy Defying Gravity/Kiss me good-bye I'm Defying Gravity/I think I'll try Defying Gravity/And you won't bring me down...
--Defying Gravity (Glee Cast version) |
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lckymom311 Posts: 65
Member
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Thanks guys! I try to take care of myself but it is hard i put my babies first all my energy goes to them. Im not on AB right now waiting to be referred out to a llmd ugh i hate the system it fails some you know. The pred shot was because i feel so nasty and tired and i begged my dr to help. But i too have a rash thats one of the reasons i kept pressing my other dr i broke up with to do more tests ( he wanted to diagnose me with fibromyalgia ) i too feel its apart of the Lyme I know im looking for the quick fiz but damn i just need an hour of relief...hello god its me! Can i plse get some relief? |
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fluffyluggage Posts: 4723
VIP Member
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I know the feeling. I do have the diagnosis of FMS, CFS, all sorts of other things. It's not necessarily a bad thing, in and of itself. If you have all the symptoms, you can technically have other things--think of it this way, Lyme causes these things. So, it's possible to have FMS. But you want to still get down to the bottom of it all, too. With my FMS, I take a medication called Neurontin (generic gabapentin), and I've seen some amazing results. It helps sooooo much with my nerve pain, I can't tell you how much better I've been feeling. If you can get it prescribed, you might feel better. Just a thought, but it helps me to sleep, and it helps with the pain. With the exception of not having 2-legged children (I only have the furry 3- and 4-legged ones!), I do know how you feel! Good luck! Hugs, jen Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help. I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.
Something has changed within me/Something is not the same/I'm through with playing by/The rules of someone else's game/Too late for second-guessing/Too late to go back to sleep/It's time to trust my instincts/Close my eyes and leap...I'm through accepting limits/Cuz someone says they're so/Some things I can not change/But till I try I'll never know/Too long I've been afraid of/Losing love I guess I lost/Well if that's love/It comes at much too high a cost/I'd sooner buy Defying Gravity/Kiss me good-bye I'm Defying Gravity/I think I'll try Defying Gravity/And you won't bring me down...
--Defying Gravity (Glee Cast version) |
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"MDJunction has been my lifeline. In the beginning, when I was at my worst physically and emotionally people helped me through the rough times with compassion, understanding and information. As I progressed and finally got a handle on my condition, giving back that same support and hope has been my mission. To all that come here seeking help or information, you will be able to find in all of the various forums; no matter what issues you are going through, there is always a helping hand to raise you up and provide hope and support when you need it the most." (thematrix777)
