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 Post subject: i cannot get over a wrong decision i made
PostPosted: Mon Jul 06, 2009 7:10 pm 
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i am a type A personality and very hard on myself.
and because of my very long history of bad experiences with doctors i have a difficult time trusting them.
thus my dilemma.
in early april after seeing photos of my huge sore on my arm my doc had me stop all abx and put me on antifungals......i started feeling better to the point i could now be bathed with water.
but after a month my cd57 dropped significantly. i freaked, called my doctor and convinced her to put me back on anitbiotics along with all the antifungals(even though she told me it would be too much).
now even though i stopped taking the antibiotics....i lost the improvement i gained on the antifungals.
whenever i make a wrong decision, i feel like i let my mom and my son down. as i lie here in bed yet another day...all gross from not bathing or washing my hair i want to turn back time.

how many time have i gone left when i should have gone right....so many.....i know i could have prevented myself from becoming bed ridden so long ago if i only made the right decision. But i also know that fear has stopped me from getting the treatment i needed earlier when i still could.
fear has never helped me make the right choice.
but because of my immense brain fog and the fear of making the wrong decision ....i have a very difficult time making a decision.
i have always had a difficult time with antibiotics.....and this is me thinking out loud about IV antibiotics.

today came the book on rife by brian rosner. i have been thinking about rife for 10 years.....time to try it.
jana


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Mon Jul 06, 2009 10:18 pm 
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Don't be so hard on yourself, we do the best we can.

Don't pay much attention to your CD57 - they are finding it to be a VERY imperfect test, read this: http://www.publichealthalert.org/Articl ... %20C4a.htm

I saw the LLMd who "invented" the test - it is full of flaws- the article above explains.

Let us know how rifing goes - it may be really great for you.

Dana

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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Tue Jul 07, 2009 2:21 pm 
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sorry Jana, Lyme is persistent now and it's not easy to get rid of it, there are so many strains of Lyme now it becomes very complicated, not to mention the co infections that sometimes accompany Lyme. Lyme weakens the immune system to point where everything is magnified and until we get our bodies immune system back in control it's going to be hard road ahead of us.

Just remember how Lyme can come and go in different severity's and when you just think you are getting better you get knocked down again, Lyme is like a roller coaster ride. I will keep you in my Prayers and keep up the treatments until all symptoms are gone, i skip here and there when i have to but then i start the abx again.


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Tue Jul 07, 2009 2:29 pm 
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yes you told me about the cd57.....not being too reliable before.....so i do not pay to much attention to it.....but that is really all i have....how else will i know some antibiotic is working?
i started at 19( cd57 )while on antibiotics it went up in the 50's. while off abx...it went down in 20's......back on antibiotics went up in the high 50's. i had my cd57 taken about 6 times this past year.....and it was always consistent with antibiotic use.
of course i felt the best while it was in the 20's while off the antibiotics.
my doc also used the cd57 test only to diagnose me with lyme.
i asked her countless times.....are you sure i have lyme...yes was the answer. but i wonder how many co-infections do i have. i do have an active EBV and herpes virus 6.
i am so beyond tired, and in so much pain.....and so angry and i'm flat as a board(.not talking about my chest)
so for once i would love for my husband to say "honey don't worry i will research this for you-i will take care of it-we will get the help you need.
but no...and i do not get it.


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Tue Jul 07, 2009 3:39 pm 
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missed your message johnnylight while it took me the two hours to post mine.
i admire the way you fight for your sister...and i have to admit i wish i had someone like that in my life.

i am grateful for what i have-because i am well aware that many people out there have much less than me.
i am crying here for the upteenth time this week. i am crying becausei am so deeply depressed :sadangel: and because there are so many people suffering, and because i did not answer krissy's post about her son with ADHD, ODD and OCD because i know how absolutely frustrating it is especially if the mommy is sick too.
:faint: my last sane brain cell.


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Tue Jul 07, 2009 3:51 pm 
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No problem that's why we come here to gripe and complain and you have every right to.
At least you don't have to go through this alone there are so many others in the very same boat at least that's the way i try to look at it, hope you have some better days ahead in Jesus name i ask, Amen!


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Wed Jul 08, 2009 5:51 am 
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don't be so hard on yourself honey. we all do the best we can, and I really have to believe that God will work it all out for our best interest anyhow, no matter where we falter.

I'm sorry you don't have a lot of support, I know how that is, and how hard that is. My husband griped about the money we'd spend on a llmd, even though he took our insurance! He has no idea how in debt we could get, and he won't let it happen either...he'd leave me on the streets to die before that.

I think you should start working on your immune system. I can't think right now, I haven't really slept in days, and I'm really foggy at this point, but there are so many supplements out there you could take...if you just google immune boosting supplements you'll come up with a lot I'm sure.

_________________
"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Wed Jul 08, 2009 1:39 pm 
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there is a poster i should get it says " begin each day with a grateful heart".
somehow the knowledge that there are people out there suffering like me does not make me feel better it makes me very sad and angry. it makes me angry that the health system is in such shambles. providing health for a country's citizens should never be a business.
but you are correct johnnylight it is good to have people you can share advice with and who stop you from jumping overboard when you are at your wit's end.

i do take immunsupport:
immunoglobulin
quercetin
resveratrol
coq10
and many antioxidants
i also give myself vitamin b and magnesium shots.
jaime, you seem to be going through a rough period. is there anything i can help with? i mean like maybe advice with sleeping.
jana


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Thu Jul 09, 2009 5:56 am 
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Jana, you're so sweet, thank you for the offer... hey if you can think of anything else other than what I've tried, I'm game. I've done everything I can think of, taken everything I can (not all at once), usually when I herx and go thru this lack of sleeping issue, nothing seems to help, not even some of the strongest drugs... I guess that's how I know when I'm in a herx, nothing helps.

The B shots you do, they are methacobolamine right? there are two types, one is cyanacobolamine, that's the one you can get anywhere basically, the metha you have to send in to a compounding pharmacy (where they actually make it), Dana has a whole thread on it in the "everything you need to know" section.... you really want the metha.

also, don't under estimate vitamin C, I know some people take it upwards of I think 10 grams a day... of course you won't start out with that much it can be irritating to the bowel, so they say to take it until you get diahreah, then back down a bit, and slowly work up from there....

just a thought :)

_________________
"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Thu Jul 09, 2009 1:25 pm 
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i take all the vit b's but the b12 i take is cyanocobalamin....why is the other one better? one more thing i can learn.
i do take vit c-sometimes enough till i have go to the bathroom.
i have a really hard time sleeping and i do not like to take sleeping pills. they make me sick.
what works for me is: elavil clonopan neurontin melatonin and magnesium shots.
jana


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Fri Jul 10, 2009 6:27 am 
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Dana has a huge post in the "everything you need to know" about cyana vs metha, the main thing is that cyana has cyanide in it I think, and heavy metals. The metha is a more pure version of it.

My doc won't give me clonopin...I've been on xanax for a long time, and I've begged him to go to ativan or anything else because with xanax you build up tolerance REALLY fast, and unless I don't take it for a couple weeks and then only take it for a couple days at a time, it doesn't seem to help much, I used to take elavil and neurotin too, never made me tired at all...go figure. Heck, my lyme doc, the second time I went thru this I called him and said "YOU MUST call me in something NOW" he called me in the big ambien's, I was so excited, the pharmacist told me to take it when I was in bed because I would likely just pass out quickly, YES SLEEP, sweet sleep! NOPE...didn't do anything at all for me... so then he have me lunesta, didn't do anything either...I could take them during the day if I wanted and it wouldn't phase me! what in the world!? it's like when I'm herxing nothing helps. Now when I'm not herxing it's not as bad, and a xanax and soma will do the trick...

_________________
"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Sat Jul 11, 2009 1:51 pm 
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i took xanax a long time ago....did nothing for me.
the first time i took ativan and clonopin was about 9years ago and i thought it was a great drug-until i tried to get off it. wow, i thought i was going to kill myself and i had no control over it. my doc said i can put you in a padded room or i can get you off slowly with valium....and that is what we did.
i do not take more than i absolutely have to
i have great respect for the drug.
are you seeing an alternative or integrative doctor?
jana


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Wed Jul 15, 2009 7:49 am 
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well, I got so sick on lyme treatment I had to stop , so was going to hit it hard naturaly this summer then realized that I have 2 youngins and can't be bed ridden, so I"m just managing symptoms, I see my "fibro" doc and get pain meds and xanax and sometimes soma'a from him...

when you were on xanax did you ween off very slowly? valium is a good one too, the way I see it, addiction is the last of my worries, I need to be able to function...they do have drugs out now that help with addiction, can't think of the name of it, so that could be an option...

_________________
"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Wed Jul 15, 2009 1:51 pm 
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i took xanax a long time ago and did nothing for me so no, i did not have to ween off.

if not worried about addiction than clonopin and ativan are the way to go.
clonopin best for helping you sleep and ativan which will also help you sleep is best for anxiety and more addictive than clonopin.
i used valium to help ween off the ativan.
valium has a longer half life and stays in your body longer....takes you of the high gentler.

jaime do not do what i did, i wish i stopped everything in my 30's and told people i am sick NOWand i need help NOW. i did not even thing that was possible so i kept drudging on, being strong. but it did not get me anywhere. well it did- it got be into a state that was unimaginable to me.
i know it is difficult with children, you might thing impossible, but it will not go away without treatment.
jana


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 Post subject: Re: i cannot get over a wrong decision i made
PostPosted: Thu Jul 16, 2009 5:16 am 
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I've tried to get my doc to put me on ativan and he won't, he says they are all the same....I know they aren't, as my friend gave me some a couple years ago and they worked like a charm....oh well what can you do....just manage as you can

_________________
"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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