posted
I feel like it is taking forever for this appt but it is finally one week away. My mind is going crazy. I've been to so many Drs. and none of them offering me any help or advice. One telling me that I have CFS. This LLMD appt I feel is the most important appt of my life because I feel that it will either confirm that it is Lyme or that it is CFS and not much they can do. That is my biggest fear. I quess I will soon find out.
I cant help but think the worst since all I do these days is lay around the house watching life go by. Sorry about the crappy post I quess I'm just scared about what the future holds for me.
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Mike, I know what you mean. I was very active and now I'm exhausted all the time. My problems started with mono so I got the whole spiel about post-viral syndrome and CFS too.
Ultimately, I tested positive for Lyme though, which can be opportunistic and spring to life when you're under siege by another illness.
See what the LLMD and the tests say.
Even CFS can be treated though not always very successfully but there are specialists for it. Valcyte has been used with some success but also has dangerous side effects...but there are other protocols...
Did you do the Igenex WB yet?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
It's understandable to be anxious when no one has been able to help you yet. The good thing is you are having your appointment and that will get you informed so you can start down the road of healing.
Have a great appointment! If you're anything like me, write down all your questions so you don't leave there having missed something you wanted to know about.
quote:Originally posted by Lymeorsomething: Mike, I know what you mean. I was very active and now I'm exhausted all the time. My problems started with mono so I got the whole spiel about post-viral syndrome and CFS too.
Ultimately, I tested positive for Lyme though, which can be opportunistic and spring to life when you're under siege by another illness.
See what the LLMD and the tests say.
Even CFS can be treated though not always very successfully but there are specialists for it. Valcyte has been used with some success but also has dangerous side effects...but there are other protocols...
Did you do the Igenex WB yet?
I was told 3 months ago that I have CFS because of the symptoms and the high EBV vca igg titers 2411. I also grew up in NJ (middlesex county) so I started looking into Lyme Disease.
I am still seeking Diagnosis but I just received my WB from IgeneX and even though it is negative I did receive some reactions on both the IGG/IGM
My IgeneX WB results are
IGM
**23-25 was IND **31 was IND **39 was IND
**41 was +
IGG
18 was ++ **39 was IND **41 was + 58 was +
At least I will have something to bring the LLMD when I go on the 13th.
Thanks
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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Yes I found a LLMD from this site, Betty helped me along with several other great people from this site.
Posts: 103 | From New Jersey | Registered: Jun 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Its good that you have your Igenex results, this will save time and you wont have to wait for the results to come back.
make a list of your symptoms also to bring with you and questions you want to ask.
Good Luck!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yeah, your WB is very compelling and even though some of those bands are weak they are nevertheless present and many are the important bands....
And even more compelling is the fact that you have Lyme bands on both the IGM and IGG blots....
Good luck with the doc...let us know how things go...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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bettyg
Unregistered
posted
hi mike,
we all remember the WAITING FOREVER period.
someone mentioned making a list of your symptoms; go to my REVISED newbie package link below,
and print out the extensive symptom list and CIRCLE/CHECK OFF those symptoms YOU DO HAVE!
again, read, read, and read .. the more you become familiar with the basic terms by reading dr. burrascano's 05 ILADS LYME GUIDELInes; IT WILL TRULY HELP YOU.
posted
Thank you all for the great advice. I have typed up my symptoms and have written all of my questions but I am printing out the symptom list and will circle all that apply to me. I also have made copies of all of my test reults to date. Thanks Betty, your always a great help.
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Try not to stress out too much, Mike. It will all be fine.
Just take your list with you and ask lots of questions.
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