posted
Hi all- I am brand new to this forum and feel so lucky to have found this resource. I, like so many of you, am feeling absolutely desperate. I am 33 years old and was an active runner (etc) until a few months after I was bitten by something while participating in an adventure race in the deep woods of Pittsfield, VT.
I only include that I was active and strong because after hearing over and over that at this point, much of this is psychological (please...) I feel the need to defend my desire for wellness and my old lifestyle back.
I noticed a few 'funny' things in the weeks after being bitten (slight/ occasional facial tics, leg tremors and a profound tingling sensation at the spot where I was bitten and also at the top of my cervical spine. Nothing else...and to be quite honest, I never gave the bite a second thought. Although it was VERY unusual, so my boyfriend and I suspected a spider and dismissed it. Then, several weeks later I somehow ended up with bacterial meningitis. At that point the (still not "officially" diagnosed) Lyme came out in full force and even attacked a cranial nerve leaving me with Bell's Palsy for 8 weeks. I cannot believe my face is back to how it was, but even more alarming is how in retrospect, physical appearance is nothing compared to the suffering my body has been enduring for the past year.
I won't bore everyone with the rest of everything. I just need help desperately. I was once in control, a textbook nerd and even went back to school, pre-med an a biology student in order to accredit what I was learning in books and academic papers. Now, I just feel hopeless and helpless and lost. I have been tested a million ways and subjected to L.P.'s and repeatedly misdiagnosed.
Obviously there is much more to the story but at this point, I have only had one Neurologist from Jefferson gracious enough to not imply that this was 'all in my head'. Unfortunately, though he agreed that Lyme was a highly likely cause- he simply felt his hands were tied as far as treatment was concerned.
It has now been 1 year and 3 months that I have lost.
I'm sorry for the length of this post. I know that anyone dealing with this is absolutely frustrated and exhausted.
If anyone reading this has any knowledge of a Lyme literate physician in the try state area, even better a pathologist who understands co infections- I would be so grateful.
Thank you so much for taking the time to read this. -D
Posts: 6 | From PA | Registered: May 2012
| IP: Logged |
posted
Ugh...Tri-State area!! I'm sorry! Spell check Posts: 6 | From PA | Registered: May 2012
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
So glad you found LymeNet!!! Welcome.
I sent you a name and some information. Get with a great lyme doctor and get your life back!
Lyme stole 5 years of my life, but now I have been lyme-free and symptom-free for 7 years. I am enjoying my life. It is the same life I had before lyme disease!
But, the doc is the key to getting rid of this disease. Can't emphasize that enough. The doc is the key.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
TF- I can not BEGIN to thank you enough!! I didn't mention too many details above, but I was a pre-med student prior to the worsening of this illness and I have studied neurology and biology in and out of the University environment for for years. ALL of your advice was incredibly helpful and I plan to contact her first thing Monday and get my name on the list! I mention my academic history only because I noticed that you put a big emphasis on reading and studying the materials, co- infections, specific bacteria etc...PLEASE KEEP DOING THAT!!! Although, I was lucky enough to be ahead of the game in that ONE respect- half of the reason that this is so overwhelming is the lack of knowledge that most people have when they are forced to begin this journey. If you're not a science nerd like I chose to be, you have no reason to walk around knowing that stuff. BUT- the knowledge has been ALL that has helped me feel like I might have SOME sort of hope in all of this. It gave me a sense of control that I needed so badly. I already feel like I'm drowning, I can only imagine how I'd feel if I didn't even know what a spirochete was, or that the bulls eye rash is a cute folksy thing but really only shows up about 1/4 of the time. So- I can not thank you enough for that wealth of information, it revived me enough to feel like I am willing to jump back in and seek treatment again. I had just, once again, hit that rock bottom 'physician fatigue'. And reading your words imploring people to study, study, study so that they can be better self advocates was so refreshing!! It will help them so much. I of course still have a ton to learn myself- so I'll obviously carefully read the material as well. Thank you so much for remaining a part of this forum. Honestly- you made a difference in my life today. Thank you. I will contact her on Monday morning and I am hopeful!! - but, even if it's not the solution, knowing that others are committed to this makes it so much easier to handle. Thank you again. Appreciatively, D
Posts: 6 | From PA | Registered: May 2012
| IP: Logged |
posted
Here is a link to the Haverford Lyme clinic in PA. Their website sounds like they know what they're doing, but perhaps others can share their opinion of this place. They even accept insurance in some cases:
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
| IP: Logged |
posted
You need be evaluated and treated by a LLMD (Lyme-literate doctor). I don't know of any in PA, but will send info for CT.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme disease. Thanks.
Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Although, I was lucky enough to be ahead of the game in that ONE respect- half of the reason that this is so overwhelming is the lack of knowledge that most people have when they are forced to begin this journey. If you're not a science nerd like I chose to be, you have no reason to walk around knowing that stuff. BUT- the knowledge has been ALL that has helped me feel like I might have SOME sort of hope in all of this. It gave me a sense of control that I needed so badly. I already feel like I'm drowning, I can only imagine how I'd feel if I didn't even know what a spirochete was, or that the bulls eye rash is a cute folksy thing but really only shows up about 1/4 of the time. 
Printer-friendly view of this topic