posted
I am a 33 year old female who since December 7, 2004 have not been the same. My symptoms have waxed and waned and are the following:
24 hour period in Oct. where i thought I had the flu. It went away and came back in December.
*Myalgia-off & on in different places but basically more on the Rt. side of my body. *numbness and tingling in arms and hands *Slight vertigo/lightheadness *Chills/Tremors and a severe pain attack which lasted 30 minutes where the vision blurred in my left eye and my face felt like it was going to go numb *uncontrollable crying *Fatigue *coldness in my extremities *pains in my eyes *dry eyes *dry mouth *cracking of joints *nausea *electrica jolts and misfires *confusion
After much doctor shuffling they sent me to Neuro who did an MRI of head that was negative, a lyme disease test (ELISA) that was negative and a EVP which was negative. But heres the interesting twist in the story. I came up positive for a Mono test which I have no idea how that relates. Neuro didn't think I had MS since my head scan was negative and was going to send me on my way without doing anything until she did a reflex exam and my right leg wasn't responding. Then she decided she would cover her ass and order another MRI of neck and spine. I am so frusterated I just want to find out what is going on with my body. You have to push these doctors to do the full gammitt of testing. She was reluctant to do a spinal tap. Now I am awaiting my 2nd MRI to come back and we'll go from there. I am going to another neuro for a 2nd opinion and I want a more accurate test done for Lyme. Can anyone suggest a lyme doc close to York, PA...any comments on my situation are welcome. Good luck to anyone out there going thru the same thing.
posted
Welcome to Lymenet. You've come to the right place. You can go to seeking a doctor on this site and post for a dr in that area.
There are plenty of PA folks here, that's for sure!
As for your symptoms, I think they are highly suggestive of Lyme. [I am not a dr!] My suggestion would be to dump the neuro as soon as you get the scoop on the MRI.
WHY? Most neuros are useless when it comes to diagnosing Lyme. I'm glad you at least found one reluctant to do a spinal tap! Thank goodness for that one, since you have a 7% chance of it finding Lyme.
The ELISA you had is notorious for false negatives. There's a 40% accuracy rate on those things. What you need is a Western Blot...and I would suggest you get it thru Igenex or MDL labs. Igenex is best in my book.
Here are some links for you. There's alot of information here, and it will take you a long time to go through it all. But keep reading!
I hope you find a good dr soon and can be on your way to recovery!
1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Been there and done that - only I saw 2 neuros.
Run screaming as fast as you can from them. Even if you manage to convince them to run a Western Blot lyme test, it'll probably be from an insurance lab and the results are not to be relied on. (And next, they will probably try to convince you to get a spinal to 'Rule Out' MS.... Not!!! You need a Western Blot from IgeneX or a QRib from Bowen for a clearer picture.
Lyme is a clinical diagnosis. The tests are merely to help aid in the diagnosis. A Lyme Literate Medical Doctor will be experienced in this and know what to look for. Your symptoms are highly suggestive of Lyme. There's tons of posts here linking MS to Lyme - it's the great imitator of other diseases.
Please post on the 'Seeking a Dr.' section, and include in the title your state and region. We don't post LLMD's (Lyme Literate Medical Doctor's) names here - as most don't like to be known as such.
Lymetoo gave you some great links, so do your best to read up.
Welcome to LymeNet!!
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
You've been given good advice and I agree with Lymetoo...your symptoms are those associated with lyme disease and you may a coinfection,too. These ticks are cesspools...they can give you Ehrlichiosis, Bartonellosis, Babesiosis, Rocky Mountain Spotted Fever. All of those can be found in your area.
The ONLY way you will know for sure...is to dump the neuro...and find the name of a Lyme Literate MD, or LLMD for short. They see so many lyme patients and know how to diagnose and treat coinfections too. If you want to get well, this is the key. Take it from us....we have been where you are right now.
Find the Seeking A Doctor forum up on the left and ask for an LLMD near you. Be sure you leave your email there as we don't use doctor's name here except by permission.
The sooner you get an appointment, the sooner you can start treatment and get started on the long road to feeling better.
Also, check out Support Groups and see if you find one near you. Get in touch with the contact person and see if you can get a recommendation for an LLMD that way.
Glad you found lymenet and we're here to give you help and support as you need it along the way.
Best of luck!
Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
I'm wondering what kind of Mono test you had, and like you, wondering what it means. Is Mono just another label for Lyme or Lyme co-infections, or what? I think the Epstein-Barr virus connection in Mono was called into question long ago, right? What does Mono mean these days, if anything?
Posts: 204 | Registered: Jan 2005
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posted
According to this Neuro I'm seeing, she told me that Lyme and Mono (Epstein Barr) are two different things, but then she proceeds to tell me she doesnt know about them and that she doesn't treat infectious disease and I should see my medical MD. In another words, thanks for coming in sorry you feel like crap but wait it out! Posts: 204 | Registered: Jan 2005
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posted
Hey there. I think I know of a LLMD that is close to you. Just click on the letter icon and it will tell you my e-mail and I will give you that information.
It will be where I responded to your last post.
Take care.
Maria
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Nukegirl,
You have been given great advise, I hope you find a LLMD soon. Glad you found Lymenet and Welcome.
posted
Yep, dump the neuros. They waste your time and money with tests and stupid diagnoses that fit the limited experience they have. Mine told me I had epilepsy and when I did not respond to meds, proceeded to ignore my phone calls.
When Lyme is suspected you have to find a doc who knows about it, pure and simple. Otherwise, open your pocketbook and dump your money in the closest river or lake or the toilet will do.
Do I sound bitter, yea I am. One year wasted with no treatment for lyme because of "speicalists" who all "knew" what I had.
Get thee to a lyme doc ASAP. Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Hi Nukegirl!!
I'm posting to say hi and echo all that has been said. Wow.....you've got your reading and homework cut out for you.
I know how difficult it is to move forward and research proper treatment when you feel so dang bad......been there. BUT waiting is not what is needed at this point!!! A wait and see attitude is a lot easier for the docs, they aren't the ones dealing with the illness 24/7. We have to be strong advocates for ourselves and each other.
Run, don't walk to a very good LLMD for evaluation. Trust the information in the links you've been given here and make that appointment ASAP. Once you've got an appointment......keep educating yourself on lyme and it's co-infection friends. I'm not a doctor but I can tell you that very commonly lyme/TBD's is/are misdiagnosed as MS.
You can look at it this way.......MS is a cluster of symptoms which paints a picture called MS.....there is no known cause, no known cure and treatment consists of treatment of symptoms only. Lyme is a bacterial infection, treatment gets at the cause, there is hope of improvement and return to a productive lifestyle.
I'm so sorry that you are facing these challenges!!! There is hope with proper treatment. You are so fortunate to have found the people, information and support of this forum!!!!
So.....good luck getting an appointment in place with an LLMD (Lyme Literate MD).
Hang in there.....healing thoughts.....lightfoot
------------------ C O L O R A D O * S U P P O R T * S Y S T E M [email protected]
"A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words". Unknown
[This message has been edited by lightfoot (edited 21 January 2005).]
Your post caught my eye because I'm from New Cumberland. Sorry you're not feeling well.
I checked to see if you had an email address listed so I could send you a PA list of lyme-literate doctors (we call them LLMDs, but I see that it's unavailable. That's fine, of course, but if you would like the list, email me (click on the little email icon on the screen) and send me a request for the list and your email adddress. We can't post it here on this site per the rules.
Or, instead, you could also call the Lyme Disease Association's LLMD referral line and request the same list. The number is 888-366-6611, then leave your contact information like the recording asks and a real live volunteer will call you back and help.
Have you been to the recently formed (I think within the last year) York Lyme Disease support group? I haven't gone yet but plan to when I find out the specifics. Held in southern York area I think. I just met one of the two co-founders of the group at a lyme fundraiser recently and will contact her to get the times. You can ask folks there who they see and like. Let me know if you want this information.
None of the LLMDs on the LDA's PA list are in our area. Be prepared to travel over an hour at least. Many poster here travels hours to see a good LLMD, not unusual.
I see Dr. J. in Hermitage PA north of Pittsburgh by about an hour. He got me well in 18 months, my husband too. I am willing to travel this far only because my entire family is still living in that area and we visit.
Feel free to email me if you want to. I will talk to you in person, just ask. I have recently helped several others in York Co. get properly diagnosed and they were positive. Your county is seeing an explosion in lyme I'm afraid.
Sincerely, Leslie
Ps. Your symptoms were exactly like mine in the early months of my infection, except I didnt have the mood changes or confustion for years later. They are very suggestive of lyme in my opinion.
You're doing the smart thing by thinking of lyme. The rheumatologists, neurologist and general doctors in my area just were clueless that I had lyme disease. I just kept getting passed up the chain of specialists. That is par for the course in getting diagnosed with lyme, sadly happens all around the country.
Posts: 340 | From Harrisburg, PA | Registered: Jun 2003
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Good news. I found a doctor very near my area. Dr. D who sends western blot to Igenex labs and will read the results. His office told me that he runs that test first and if positive, then he will run the rest of the tests for co-infections. I am picking up the kit today at his office and am getting the ball rolling immediately. How can I thank you guys enough for all your great advice and help. I will keep you updated on the results. Fish, my e-mail is [email protected] and for anyone else who wants to e-mail me. I do live in Southern PA and it was interesting to note how many cases are in my area and also how someone else was positive for mono first.
[This message has been edited by Nukegirl (edited 21 January 2005).]
I was going to mention this doctor's name in an email to you...he's not on the LDA's list, but maybe someday??? (I hope!! (I don't know what a doctor has to do or be like to make it on the list....I'll have to find out) I have referred local people to Dr. D. when their regular doctors refuse to consider lyme. Dr. D. is very agreeable and seems to have a real handle on lyme disease. (some doctors THINK they know a lot about lyme disease but it becomes clear quickly that they dont; this is not the case here I've been told.)
I've heard his is very likable and really getting into the field of lyme disease. Someone I know who sees him says he started taking lyme seriously and dove into it about 3 years ago.
He would be an excellent choice, locally, to diagnose you properly.
He may or may not have the experience or knowledge to treat complicated cases (I heard this from another local person.) But I can't say this personally, I just heard this from someone who felt the man needed to see out a more experienced LLMD because his case was severe.
But just because he's more inexperienced (in lyme treatment) than many on the LDA list, doesn't mean he won't end up being a well-known, well-regarded LLMD in the future...This I'm hoping for!!! We need someone good and close!
But sure, start out with him, if not stay with him. If you were infected only in Oct. you may be an easier case to treat anyhow, relatively speaking.
IMPORTANT: Could you kindly go back into your post and edit out the doctor's full name and just change it to Dr. D.? We don't post any doctors full name here for a variety of serious reasons. Some doctors do give us permission to post their full names, like the pediatric lyme MD Dr. Jones.
Just click on the little icon above your post that looks like a pencil and paper and edit.
This happens with new folks a lot, so we understand. There's a good link that explains why this is necessary. I think it's called "Why we don't post Doctor names here".
I'll send you the PA list anyhow, just to tuck away somewhere or to pass on to others with lyme you know.
Update us on your results!
Posts: 340 | From Harrisburg, PA | Registered: Jun 2003
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I went to Dr. D's office today and picked up the western blot test. I am waiting to hear from my PCP as to whether they can call an authorize it so my insurance will reimburse me. The sooner I get that test the sooner I can move on with treatment or rule out things. I'm glad to hear other people said good things about Dr. D because it my test turns out positive I was actually contemplating moving my records to him and changing my PCP since I am not really happy with them anyway. I mean, they are nice enough its just I need someone who is going to dig further to find out what is going on with me. My PCP told me that the mono just has to run its course, but I don't think thats what is going on here. He did say that sometimes you can get a false positive on mono tests too! This board is great for discussing things because I think my co-workers are tired of hearing me talk about it.
posted
Sounds like you've got a good plan of action. I changed primary docs 3 times in 2 months searching for a diagnosis. Yes, thank goodness for this forum, my family was getting weary of me, too!
Posts: 340 | From Harrisburg, PA | Registered: Jun 2003
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DiffyQue
Frequent Contributor (1K+ posts)
Member # 3317
posted
Hello, I was just diagnosed with lyme disease today. Please, please listen to all of these wonderful people. They saved me a lot of time and money. Not to mention, I finally know what is wrong with me.
It is difficult to go through continual testing, just to get another negative test. If you think this is what you have, don't waste time. Good luck!
posted
Your symptoms sound all too familiar. My MRI was negative too, ELisa was negative neuro said it was viral meningitis because there is no Lyme in Georgia. ELISA tests' results are more worthless than the paper they are written on. My ELISA was negative WB positive, PCR positive, and LUAT is positive.
Posts: 649 | From United States | Registered: Dec 2003
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