New to Lyme and overwhelmed!

I have been dealing with worsening symptoms for a long time now. I have had negative test results for Lupus, RA, MS, Stroke, Seizures, Gastro-intestinal diseases (who doesn't love an unnecessary colonoscopy?), Diabetes, and a negative Western Blot for Lyme Disease. I think I have been tested for more things but I cannot remember now. I really need to figure this out as soon as possible because I am struggling to function even at a minimal level at work. I live in York, PA. and I would greatly appreciate any advice on where/who to contact for help. Thanks so much!

-HopeOn

Hi Springsjean,

I have been doing a lot of research on Lyme Disease which is actually how I found my way here :).

I sort of stumbled across Lyme Disease as a possibility when I first started researching possible diagnoses for my condition back in January. I had to force my doctor to even order the Lyme Disease test (she seems to think I am just a crazy hypochondriac). I will have to call them to ask them to send me the test results (I never even saw a copy of them, they just called me and said it was negative).

I have the names of a couple of doctors who are certified by ILADS but I would love to know if anyone has seen these doctors before and what they thought of them. I am just so tired of getting the run around and my boss has basically told me that I have to figure out what my next step is because at this point I am "unreliable" which, unfortunately at this point, is true because my symptoms and their severity vary from day to day and hour to hour sometimes. Some days it's so bad I can not even go to work.

I'm sorry, I'm rambling now, I'm just so frustrated and confused and hungry for information and answers.

I must say though, it is nice to find that there are other people out there who can understand what I am going through...makes me feel a little less crazy when the whole world seems to think I'm just losing my mind.

Thanks.

 

Hi HopeOn, just wanted to welcome you. Most of us with lyme get told we're a hypochondriac a few times, and unfortunately most doctors brush off lyme way too easily. When you see a LLMD, a good one, at least, they'll usually perform a Western blot from Igenex or a similar specialty lab - they tend to be much more reliable, but even then, a good doctor will diagnose clinically, as we can't rely 100% on tests. I'd suggest seeing one of those doctors as soon as you can - the sooner you can get treated or at least rule this out, the better. Either way our members here are chock full of amazingly helpful tips on managing lyme and just feeling better in general, whatever your condition.

I'm sorry you're going through all of this - hopefully you find some concrete answers soon!

HI, hopeon12,, your symptoms sound like mine.. It took 20 some years for me to have a postive lyme result test.. so who knows.. could be lyme.

Sure wouldn't hurt to find a LYme Literate doctor in your area. I live in arkansas.. myself so can not recommend one.. but this healing well site is a good place to ask.

I did not start having the seizures until this year headaches daily, and vision problems.. last year it was numbness, food like getting stuck in my throat and cough it up later.. I know gross..

Joint pain, swelling joints, insomnia panic attacks, anxiety, on and off for years.. neck pain OMG awful neck pain for years now.. the list just goes on and on.. and changes as time goes on.. so know how the doctor could think we were just looking for drugs, or mental illnes.. lol. tho not really funny.. ugh

My doc ran western blot and 3500 dollars of other blood work,, said I had Lyme and rocky mountain spotted fever.. at some point in my life.. ? gave me 30 day of doxycyline..sp? and it has helped..

I am having a sleep study done next month to see if I have problems there.. causing fatigue... and January 2013 is my 1st appointment with Lyme Literate doctor.. but I just hate to go to him,, he does not accept insurance.. all so screwed up.. enough to make anyone feel crazy.

So You lose your words too.. I have been doing that more myself this year.. I want a spoon ask for a straw ( sort of thing) cant remember names.. etc.. sometimes it feels like I just cant think at all. which is hard to explain.. like blanks out.

I do hope you figure it out,, and keep me posted cause I am telling you we could be dealing with the same thing.. I am curious what you learn.. and I will keep you posted also..

Oh, I also wanted to add that Lyme symptoms do vary significantly day to day. Some days, I can function and other days I can't even take care of my kids. Overall though, symptoms have slowly worsened over the past 15 months.
I also wanted to say that my LLMD was the first Dr. to look at the ENTIRE picture and say to me "there's something wrong and this isn't normal". He caught things in previous blood work that none of the other Drs. even said anything about. From what I understand, most LLMDs are able to look at the puzzle pieces and try to fit them together. My LLMD said that medicine is still often an art and that it takes some piecing together when there aren't any really concrete clues (such as in diabetes, cancer, etc.). I had been to many neurologists (I think 5), a GI Dr., rheumotologist, endocrinologist, and many internists among other doctors. When I went for the consult w/ the LLMD I was so scared that he was going to be rude and/or dismissive. I just didn't think I could handle another "beating". I almost cancelled my appt. because of it. And, he did ask me if I was depressed or anxious when I told him that other Drs. said it was "psychosomatic". When he did, I wanted to run out of his office, lol, but he said that he wasn't asking because he thought that was the reason for my symptoms, but because it is often a symptom of certain conditions (now I know that he was thinking that this was Lyme before testing).
The final thing that I wanted to add is that I never had the rash or recall a tick bite. I don't know when I got Lyme, but the huge flare in symptoms occurred from immune system changes during pregnancy.

Justme - i will have to find the movie under our skin, I want to know everything I can about this disease and what to expect/look for.

Bars - I lose my words all the time, it is so frustrating. I have always been a very articulate person good at public speaking, teaching, theater, etc. and now I feel like an imbecile constantly stumbling over my words, almost stuttering, or just getting lost part way through what I am saying...I just go completely blank like you were saying. I hope the LLMD you are going to is able to help. It's aweful you have to wait until January though!!! I just contacted an LLMD and they are scheduling into NOV and I hate to even wait that long!

Mystery Illness - That is horrible that they told you to "stop wasting time and money seeing Drs. and searching for answers {because you} would probably never know why {you're} was sick"!! How thoughtless! As if we should be expected to just "deal with it" and watch our lives circle the drain and fade away!! I am so glad you were able to get a proper diagnosis and I hope you begin to feel better with treatment. Somedays I think it will be enough just to know that I am not crazy and there is something wrong. Of course I know something is wrong but it would be nice to have an answer to give when people ask me what is wrong with me.

Thank you all for the support I pray that we all get the answers and the treatment that we need and deserve!