I'm so fed up!!

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RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/5/2009 5:07 PM (GMT -6)   
where to start? hmm
 
well i was called early this morning by my nuero's office. and the lyme test came back negative. no surprise there. this i felt was my last hope for treatment.
 
recap: i was placed in doxy 100md daily in march. took it for about 7 days and was so sick i had to stop taking it. then a few weeks later i was placed in prednisone for the lesion in my left eye. i had a extreme reaction. i turned beet red. like i was on firer. i tried to take it longer but couldn't. i stopped after 4 days.
 
then i had the MRI and it showed i had 10 to 15 lesions in my brain. and 1 of the possible cosses was lyme. so i asked to be tested for it, as my dog was dx with lyme last yr.
well low and behold it came back positive on IgM. band 23 & 41.
i think due to the doxy and pred combine it why it was positive. it made lyme show its ugly head.
 
now that i am not on anything all the new test they are running keep showing up negative. its like the band 23 is specific to lyme Bb. why cant they go by this and also with my sx i have. it should be enough for treatment. especially if i am willing to take the abx. i know more then they do it seems like to me. why cant a Dr. lesion to me and do as i ask. what harm could it do to them, when in fact it could help me the most.
 
they are more then willing to give me everything under the sun for pain, dizziness, muscle spasms and headaches. they treat the sx and not the cause. this is what makes no since to me. and its a wast of money. i have been on celbrex for over a yr now, at a cost of 130 bucks a month. glad i don't have to pay for it.
I think my body was fighting it off very well for yrs, till i blow out my knee, had surgery on it and all hell brook lose. the yr it took me to have my surgery, all i keep saying was i just want to be able to walk again. over 1 yr later and i still cant walk for beans.
i have 2 adult rotties and when i try to step over them i am not able to lift my leg up high enough to clear then, so i just drag my foot over them.(glad they do not move)
 
I don't know what i can do now or where to go from here. i am at a totally loss now. i KNOW i need TREATMENT but without a Drs help i cant get treatment. and without money i am more or less up a creek without a paddle.
it has me so depressed right now. and i have been fighting with my b/f over nothing really, but i just cant seem to stop myself.
 
when i first got my positive test i though wow, i am one of the lucky ones. i didn't have to go thru the Drs bull runaround crap. boy was i mistaken. if not for bad luck i wouldn't have no luck at all.
 
so i think now. i have to either pray that the  deal on the 30th will change things for folks like me, so we can get the proper treatments. or i just sit here in my chair or bad and wast away slowly and painfully. how many yrs will it take for lyme to kill me..
i do not want to go down this road. i want answers and treatment. i want my life back. i do not think this is to much to ask for. i think its a crime that DRs are allowed to leave us to our own demise.
 
praying for everyone to have better days and nights.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 8/5/2009 8:25 PM (GMT -6)   
Very sorry to hear of this saga. The only thing I can say is that if it's antibitics you're after, you will most likely have to somehow find and travel to an LLMD. Is that a possibility for you?
Bit June 08.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/5/2009 8:33 PM (GMT -6)   
Gosh, RD, I am so sorry to hear all this! What a mess! Wrong, Wrong, Wrong!! And you know that I agree that it is negligent to the point of criminal that your Drs have treated (MIStreated) you this way! RD, I am praying and pulling for you!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/5/2009 8:56 PM (GMT -6)   
It is unbelievable that i have to hear this from you! You are my friend whom i wish I lived near so we could hang out. I would share my abx with you!! Whats mine is yours !!!! Hehe And you could give me a puppy!!!!
But I am understanding that you are a very sensitive case because it is hard to find the proper antibiotics that do not interact with, You. That is why you need a good LLMD.
I know that if you dont eat a good meal with doxy you will be sick. Eating with doxy is night and day when it comes to being sick or not.
I'm angry for you darling but being peaceful brings things closer. Its hard though.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 8/5/2009 9:00 PM (GMT -6)   
I'm sorry your test came out negative. I have an idea. Our breeder who we got our dog from always has doxy on hand for her dogs. She got Lyme last year and got a bit of a runaround. She is not willing to see an LLMD for reasons I do not know. But she just takes the meds that are for the same stuff as us. Another friend has a horse farm and got the meds from the vet. She takes them for her Lyme and it is keeping it at bay.

Just a thought. When u mentioned the pups my idea came to mind. Now those panelistss should be ashamed of themselves...the things they make us do to get help.so wrong.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/6/2009 12:01 AM (GMT -6)   
i do not have any income at all. so to even travel to a LLMD is a tuffy for me as my car is 30 y/o and the closest one i have found is almost 700 miles away. i am on a county program for my health ins. x amount a yr. and i have to go to who they say go to. i have no options there.

LoveLabs, yes i have thought of the vet thing. i even have a vile of penicillin in my frig. but i am allergic to it :( i have it for my dogs. i do most all self treatments with them. save a ton of money.especially when you don't have it..LOL your friend may not want to go to one due to the money issue as they seem to charge so much and do not take ins, just a guess on my part.

and V your thought of sharing is so sweet of you to even offer, but i could never take something from you that you need to get better. you have a baby to care for, she needs you well as soon as can be. but it shows just how caring you are at heart. i wish we lived closer together too, but as for hanging out, that cool if its in a chair,LOL that's as about as much as i can do most days.

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 8/6/2009 1:03 AM (GMT -6)   
I tell u what rd. ive gotten nothing but worse since ive been taking doxy anyway. some major leaps and bounds need to be made
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/6/2009 1:38 AM (GMT -6)   
yes but everyine says you have to get sicker to get better, so maybe this is the case for you, and your on your way to getting better soon. one can only pray this is so :)

i was just looking at online sites for ordering abx. i am not sure i can trust them tho. wish i was a lil smarter and knew now about suffing the net :( LOL
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 8/6/2009 8:13 PM (GMT -6)   
Could you try Zhang protocol or even garlic supplements and Cat's Claw (for the cysts)...
Bit June 08.


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 8/6/2009 11:34 PM (GMT -6)   
Grr.

It's crazy to think you could have a positive test that they would just ignore! How incredibly frustrating!

I could recommend taking Grapedfruit seed extract for Lyme cysts, and garlic (as hopingtofindacure said), and any immune system booster you have in your area.

I'm so sorry things worked out so badly for you. I'll be praying that you will find someone willing to treat you!

Nicky

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/7/2009 12:36 AM (GMT -6)   
thank you hoping and Nicky. i dont knwo what to do really. i am at a totally loss right now. it seems my brain just shut down on me.

but thanks for your input, and your in my prayers :)
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)

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