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Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/26/2009 9:09 PM (GMT -7)   
Hello everyone.  I am going to see my first LLMD in 2 weeks.  Hes going to run the Igenex testing.   I am pretty sure as of this point I have an active case of lymes.   I am very sick, run fevers alot of times, brutal joint pain and headaches, feel floaty, tingling feet, real bad fatigue, etc.  Started with panic attacks last june and I havent been right since.  The only thing i can do now is drag myself to work, come home and sleep..and i used to run miles a day and be a pretty strong bodybuilder.
 
My elisa test titer was 1.89 and my labcorp testing came back:
 
IgG: 58,41,23,18
and
IgM:41
so i am off by one band each to be positive of course. 
 
Based on what I am reading...this looks like its probably going to be a while before I am better.  How do you manage your symptoms in the meantime?  I need to at mimimum be able to work.  Im a software developer so at least I don't have to move much.  I can load up on coffee to keep me awake for a period... But sometimes my joints and my head are hurting so bad i can't see straight...let alone move from bed.  If i could move my wrists at least i could work from home!!  Can llmd's treat pain as well or do i need to go to a pain clinic?  I've tried tylonal arthritis and ultram.  Neither dents it.  I'd hate to use narcotics because of addiction/tolerance issues and then withdrawal, but not sure what else i can do as of this point.  
 
I also have chrons/colitis so I am on immunosupressing drugs... wonder how thats going to effect the course of my treatment.  For a while i've debated if its just colitis which is causing my problems..but my scope shows very minimal inflammation and my GI doc says its not colitis.
 
Frustrated,
Vin


History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 15mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 

Post Edited (Vin) : 2/26/2009 9:42:33 PM (GMT-7)


needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 227
   Posted 2/26/2009 11:54 PM (GMT -7)   
Vin,

Sorry to hear about your pain. I'm going through a similar thing right now (see my post from today). In short, my GP is sending me to a pain center in the hopes that managing the pain will improve my energy and mood (i.e. get better rest at night, reduced joint pain, etc). Like you, I'm having a lot of difficulty with my wrists (especially the right one). This makes working very difficult on most days. I hope the pain center can offer me some treatment strategies that will allow me to be more functional.....and allow me to actually enjoy certain parts of my life. Guess I'll find out.

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/27/2009 12:00 PM (GMT -7)   
seriously.. i don't ask for much in life!! but I need to be able to move!!
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 15mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 2/27/2009 4:36 PM (GMT -7)   
I see that you take prednisone and I learned here that steroids will make the Lyme Disease worse. Could be part of the problem, your LLMD will know about that. I do understand that you may need it for the other problems you have which makes it difficult.  D

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 2/27/2009 5:38 PM (GMT -7)   
a lot of trial and error with ld. try flexeril.

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/27/2009 6:31 PM (GMT -7)   
I had to go back on steroids again in January because my stomach issues seemed to be returning. Usually when I'd bump up to 20 mg of steroids things would calm down..but i just got much sicker.. so my GI dr told me to increase to 40... go much sicker, weaker, SEVERE joint pain and fatigue, fever.. increased to 50... and the next day i was in the hospital which was for what appeared to be a flare up of my colitis due to very bad stomach pain and extreme fatigue and joint pain, plus was getting worse and worse upping prednisone. Well the scoped me, and found out i had a very minor inflammation! so I was discharged after they were about to put me on remicade.. and here i am today still with the same symptoms tapering off steroids. Ugh. So its basically a mystery illness. Blood looks normal, i was on a course of flagyl for 8 days which did nothing. RF, ANA, blood cultures all negative, ESR = 1. The only that that keeps getting flagged in my blood tests is possible lymes.

Hope this is whats making me so sick. I know i've been exposed to lymes before as my blood has shown. So I am thinking I either got some nasty virus or standard treatment resistent bacterial infection.

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 15mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


IH8Ticks
Regular Member


Date Joined Jan 2009
Total Posts : 296
   Posted 2/27/2009 6:41 PM (GMT -7)   
If you're on steroids, then your immune system is suppressed. You're going to have a harder time fighting off the Lyme disease or any co-infection. I'm not sure how a doctor would approach it.

dozerw
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 2/27/2009 7:26 PM (GMT -7)   

Hi Vin,

 Being on steroids is not a good idea with lyme disease, it will really suppress your immune system making the little critters have that much more control over your body. Yes, it is going to be a process of the right combo of meds at different times. Also, you will have to find out if you have any other tick borne coinfections. As far as pain meds, if you are truly in pain you will not become addicted. It is when people use it without pain to get high on that become addicted. If you need it to function so be it. I hope you have found a good lyme literate doctor. I have had lyme for at least 13 years, I was diagnosed 5 years ago. Try to eat as healthy as possible, stay away from processed foods and sugar. Drink lots of water, eat lots of greens and low sugar fruit.Be sure to rest when your body tells you to. Good Luck in your journey! There is lots of info online, sometimes it can be overwhelming!! I wish you well in your journey. There is a pretty good book called The Lyme Disease Solution. It will tell you all about the antibiotics, detoxification, pain control, and a good anti-immflammatory diet. dozer


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/27/2009 7:50 PM (GMT -7)   
If its determined that I have lymes and thats what I am suffering from... its going to be one heck of a fight. I HAVE to be on immunosupressant drugs for my colitis/chrons as that is really the only treatment that keeps me out of the hospital. I am going to be off the steroids in a few weeks hopefully, but i will have to remain on the 6mp. Kind of a catch22 here. I tried to come off the 6mp and I had a nice 7 day hospital stay that reminded me why i was on it to begin with.


Just curious and maybe rather extreme..but has anyone hypothesed using any of the Interleukin treatments for lymes? That puts your immune system into hyperdrive.

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 15mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/27/2009 10:33 PM (GMT -7)   
My child just woke up from a bad dream...so I am not sure what was mentioned above...
But for pain..I love CYMBALTA 60 mg in the am.
Celebrex can cause a stroke and it did in my best friend of all time. But she is okay...just can't walk with out a cain.
But they give Cymbalta to people with diabetes...who are in really bad shape.
I swear by it. But some people say it made their heart raced.
So to play it safe....try the 30 mg..and do not mix with any coffee..
And see how it goes.
Don't take it late in the day. It will keep you up. It is also good for cronic fatique and the blues.
I could not have functioned without it.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


elle03
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/4/2009 11:30 AM (GMT -7)   

Vin - have you ever considered that your chrons might actually be a complication from Lyme + coinfections and not actually chrons? I know of several ppl who see the same LLMD as I do who were diagnosed with chrons and then later found out they had actually developed these issues bc of complicated Lyme cases. I hope your appointment brings you understanding and hope!

If I were you, I wouldn't waste your time or health on pain meds. Before I started my Lyme journey and begain to understand what was going on I had been in so much pain I was given Oxycotin and shots (I forget what they're called, but the shots they give women in labor)... neither worked. Probably bc the pain was being caused but underlying issues - Lyme.

What I can say though is it sounds like a lot of your pain is inflammatory and that can be controlled almost 100% by diet (I didn't believe it until I tried it!). I've been Vegan for several months now... plant based diets are very anti inflammatory - and I've never felt better. I'm still fighting Lyme and my co infections but I know one day I will be better.

Again, good luck with your appointment and make sure to discuss all your concerns with your LLMD. There is hope.


Lyme, Bartonella, Babsiosis


dozerw
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 3/4/2009 12:04 PM (GMT -7)   
 I have also heard diet makes a huge difference, I am starting an anti-inflammatory diet from the book The Lyme Disease Solution, I t does include fish and chicken though, which I am not reall thrilled about (I am not much of a meat eater) I am struggling with letting go with coffee and sugar, even though I use healthy sugar alternatives, not regular sugar. I had been on a raw food diet and started to feel better but I could not stick to it, I enjoy some cooked food. So I need to find a happy medium. But in the mean time I would not be able to function if I did not habe something for the pain.I also know of someone who had crohns and did the raw food diet and completely eliminated the crohns disease even though the doctor said that type of diet makes it worse!! A lot of docs don't know much about diet and nutrition, hope you have a good lyme literate doc. Everyone has their own journey! Good Luck and Be Well, Dozerw

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 3/5/2009 10:00 AM (GMT -7)   
CYMBALTA
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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