crossing my fingers

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RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/7/2009 11:02 PM (GMT -7)   
well i'm not sure  if i should hold out much hope anymore, but i did get my app dats for the nero 7-10, long time  to wait for answers. so i called em and asked to be placed on there  cancilations list, they called me right back in 10 mins with a  new appointment tomorrow afternoon. so i'm hoping  he can rule MS in or out, if its out i am calling the ID back to move up my next app with him for as soon as possable not waiting 6 wks.
 
i did have my app with the eye placite sergen and he can do anything till he knows if its lymes or MS, but both can couse my troubles.and he does belive it can be removed. so the wait is still on there too.
 
i am also gonna try to talk my reg  doc into treating me still. i have more faith in him then the ID who is said to be LLMD. cant prove it by me tho. said if i belived it was lymes after  going to a nero he would treat me, what a crock. i gave him a list a mile long  of what was  happen to me and he blows me off with a smile.  i just think if i'm gonna have to tech  the doc as i learn why not  doing it with a doc i like and how likes me...lol( he is also a lot cheaper to see)
 
i am also planing on asking my doc to check into the flow cymtyer test too. not sure my inc will cover it but i can try, have nothing more to lose there and everything to cain.
 
here i was thinking nothing could be worse then the pain, but now i have to add in the virtigo and i am so scared of falling and do more damage to my knee its like whats next. so scared of being scared now. 
 
   RD

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/7/2009 11:09 PM (GMT -7)   
Rottendog,

I am so glad you are finally making progress. Just take one day at a time. You will get there. Good luck with your appointment tomorrow!!
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/8/2009 4:21 PM (GMT -7)   
wouldn;t it be nice if there was enough research out there to support some kind of treatment of lyme so we didn't have to seek out some funky doctor in podunk, usa who is a veritable "expert" on dispensing antibitics?????

That's it in a nutshell isn't it?

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/8/2009 7:18 PM (GMT -7)   
well not sure if its good or bad but the nero orderd more test( just call me a gunipig) eco couse he things i have low bllod flow in my legs and spinal tap to check inzimes but doesnt think i have MS, so guess that leaves me with lymes, but not 1 of the 6 doctors have yet stated i have lymes, also have to have a EKG, do to heart palp lately and they gave me somthing for the dizzy spells.

I kow I do not want the spinal tap as i hurt my back when i was 5, by falling out a 2story window and was told not to have anything dont to my back or i can wind out in a wheelchair, so i'm very scared of this. but in the last week i have had 2 different docs who want it done.

i just dont know anymore, on 1 hand i think why bother with doc after doc who dont seem to know there head from a hole in the ground. then on the other hand i want to be me again and maybe if i give the docs enough time they can fix me. or do i just say that the life i was dealt and grawl under my blanket and take it as it comes.

I've always been a fighter but after 2 yrs now i have the feeling of banging your head agenst a well long enough you figuer out its gonna hurt and stop. i'm at my stoping point now, my fight is waring thin. and living in a place where lymes isnt heard of ( so they say) doesnt help.

RD

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/8/2009 8:01 PM (GMT -7)   
RottenDog, I'm so sorry you've been through so much. Please don't give up the fight yet. I really do understand and know how frustrating and hopeless it all can seem at times. From what I've learned on this forum, there definitely is hope. Hang in there and continue to teach those docs willing to listen to you and move on from the ones you can't. Right now you're probably exhausted both mentally and physically from it all and need to regain some strength to continue on but you will. It seems as if we are always fighting for something whether it's a proper diagnosis, appropriate treatment, to have our treatments covered or just plain recognition and a little understanding. It really is so unfair but we need to continue to do what we need to do to get ourselves back.

If you feel strongly about not having the spinal tap, then follow your gut and intuition and don't do it. For the past 5+ or so years I was desperate enough to try anything any doctor suggested but there was one or two times that my gut told me loud and clear NO. Now that I finally have a diganosis of Lyme Disease, I'm so glad that I listened to my intuition. Of course, I wish my intuition would have led me to a correct diagnosis sooner but that's another story. lol

Hang in there and keep fighting. Eventually, it will be worth it. I wish you the best of luck!



Good luck.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/9/2009 1:05 AM (GMT -7)   
Thank you scorpio1960,

I have always been good at fighting for whats right for others and myself when needed, but after yrs of pain its hard now. and liven in Tx and 3 different doctors telling lymes is almost unheard of here, i get mad, i've only lived here 3 yrs now, and they say the makers i'm showing is for someone who was just bit. then in the next breath they say no test is 100%. its like they cant make up there minds. but i'm crazy to think i have this . or make me feel as tho i am wishing i had this,

I wouldnt wish this on anyone let alone myself.

seeing as i havent been able to work for 3 yrs now i am on county funding for med, witch means i get x amount in covage a yr when its out i'm out , and just this month alone i have been to 6 specalest they eat up your money, not to metion the test each of em order witch coust big bucks. its a rip off if you ask me and they know it.
so from where i sit now they will use up my alotment on dumb test to no avail, then say sorry no money no help. the butts..

its like ok i think i have lymes you think i have lymes give me the meds and see if it helps me, couldnt hurt to treat it why testing for there other bull.

sorry for venting. plz over look my anger been yrs since i have slept 8hrs and now new meds wirer me up too.and i was told it would efict me like binadryl, just something else to keep me awake...lol

RD

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/9/2009 1:05 AM (GMT -7)   
Thank you scorpio1960,

I have always been good at fighting for whats right for others and myself when needed, but after yrs of pain its hard now. and liven in Tx and 3 different doctors telling lymes is almost unheard of here, i get mad, i've only lived here 3 yrs now, and they say the makers i'm showing is for someone who was just bit. then in the next breath they say no test is 100%. its like they cant make up there minds. but i'm crazy to think i have this . or make me feel as tho i am wishing i had this,

I wouldnt wish this on anyone let alone myself.

seeing as i havent been able to work for 3 yrs now i am on county funding for med, witch means i get x amount in covage a yr when its out i'm out , and just this month alone i have been to 6 specalest they eat up your money, not to metion the test each of em order witch coust big bucks. its a rip off if you ask me and they know it.
so from where i sit now they will use up my alotment on dumb test to no avail, then say sorry no money no help. the butts..

its like ok i think i have lymes you think i have lymes give me the meds and see if it helps me, couldnt hurt to treat it why testing for there other bull.

sorry for venting. plz over look my anger been yrs since i have slept 8hrs and now new meds wirer me up too.and i was told it would efict me like binadryl, just something else to keep me awake...lol

RD

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/9/2009 1:07 AM (GMT -7)   
oops sorry for the double post crzy pc actting up on me now...lol

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/9/2009 1:15 AM (GMT -7)   
Rottendog,

If you live closer to the Louisiana side in Texas, I can give you the name of the LLMD I see here. There are many people from Texas that travel to see him. Email me if you want more information. He will analyze your test results but will treat on symptoms alone. He has had Lyme Disease and is very compassionate and knows what we go through. Tell those stupid doctors in Texas to call the CDC to see how many people are really infected!!
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/9/2009 1:18 AM (GMT -7)   
i wish i was closer to there, but i'm up in the panhandle 6 to 8 hrs drive to reach dallas for me. :(

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/9/2009 1:45 AM (GMT -7)   
Oh boy. That's far. I wish there was some way I could help you. I'm 2 hours away from my doctor and when I'm feeling real bad, it takes all I have to make it there.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

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