the UPENN is the worst to go to for lyme. made fun of me when i was about to die from it and put lies in my records that kept me from getting help after i left their practice. they have a rep for humiliating lyme patients. heres my expperience and what they did to me:

was infected on a trip to nantucket island in sept. '91. went straight to my central nervous system. neuro symptoms only. did not know what happened to me. my daughter was a 9 mos old nursing baby and i passed it on to her thru breast milk. have photos of me with textbook bullseye rash from that vacation. just thought is was a harmless incect bite at the time. didn't know i had the photos until 4 yrs ago while doing a school project w/my daughter. when i realized i passed this on to my children.

sept. '93. returned to nantucket island. got another rash. again took photos. got pregnant with my son right after. thought i just needed to eat more and would sleep alot while pregnant and feel much better. didn't happen. very sick thru pregnancy. son sick since birth but not dx until 6 yrs old.

june '96. got bitten at brookside swimclub in yardley, pa. had rash on top of foot, but again didn't know what rash was and did not equate it with my health problems.

nov. '96. hit in car accident. had whiplash, but did not know because so sick w/lyme by this time. injury would not be dx for three more yrs. too late to sue and too late to be reimbursed for physical therapy. still need more but can't afford it. this is when pain symptoms from lyme kicked in big time.

late winter '98. got first throat infection since had tonsils out 20yrs before. so angry at how badly i was treated by drs, that i did not go to dr for it. became gravely ill. joints, including hip joints would crack loudly when i would hardly move. encephalitis headaches kicked in. severe pain in legs an ankles. weekness. could hardly hold on to steering wheel. Severe insomnia. now hardly sleeping at all.

april '98. husband got bad cut on foot. hated dr i went to, so picked out UPENN dr peter (puny petie) schwartz from bc/bs directory. thougth upenn drs were supposed to be the best. my cousin's husband is a cancer specialist and in the early 80's worked for upenn when they lived in the area.

by this time is very bad condition. husband very worried about me. buisiness colleague who had advaced lyme (died that following nov.) told my husband i had lyme and reccommended a dr in newtown pa. i didn't think i had lyme because all i knew about it was the crap they put in the media. since my symtoms and progression of disease mimicked my mother's multi-myeloma, that is what i thought i had too, just at a younger age. (now know lyme has been miss dx as multi-myeloma).

husband told me that schwartz was a very wierd little man with a very wierd personality and that i would not like him. told him i was very sick and didn't care about personality. just needed to see a very good dr. knowing i was gravely ill and mistakenly think upenn drs the best, called and made appt with schwartz. by this time, others who had lyme told me my sypmtoms were lyme, so i believed that probably was what i had. told receptionist that i had severe headaches, severe pain in legs, severe insomnia and strongly suspected lyme. was given an appt in the middle of june. knowing if it was lyme, i needed treatment as soon as possible. told receptionist this, and emphasised i was in severe, unbearable pain. told i was a new patient and would have to wait until june. told unlikely my symptoms were lyme. now fearing i did have multi-myeloma, i wanted to see "the best". and waited for appt.

by the time i say schwartz, severe muscle and joint pain all thru my body. almost constant muscle twitches. body completely stiff 24 hrs. stiff neck, could not turn head at all. serious heart symtoms (dr JOnes later told me my heart symtoms were heart block), burning sensation on skin. couldn't smile with right side of my face. severe nerve pain in my neck thru arms, problems breathing and swallowing, trouble walking, very weak, almost passed out many times in public and had passed out at home. wierd things going on with vision, eyes were going out of alignment, lips felt numb and no feeling in right thumb. was having serious cognitive an memory problems, trouble speaking, SEVERE headaches, tender scalp, very itchy skin, would be awake for two days in a row, third day would pass out by late afternoon, wake from severe pain less than 4 hrs later and cycle would repeat. loud ringing in ears, ear pain , jaw pain, flashes of light, would be reading, then it would be as if someone would suddenly pull the book farther from me. other halucinatory things. double vision that varied. weird sore on my spine that schwartz was not even interested in looking at. glands in throat swollen, intermettent fevers. told schwartz i feared whatever that throat infection in the spring was that i did not seek med attn for was still in my system.

schwatz told me right away he was very familiar with lyme, i did not have lyme, i had un incurable disease called "fibromyalgia" and the discomfort i was feeling wasn't doing me any harm. he did a lot of psychological manipulative stuff. he represented himself to my husband at his visit as an infectious disease specialist, although is listed in my insurence direcrtory as an internist and cardiologist. he ignored my serious heart symptoms. after aquiring my med records, learned that two yrs before at a regular check-up to my then ob/gyn, in my records they had checked off heart - abnormal - ? murmmer? , but i was not imformed. a dr stefanie schwartz is now employed there, i believe her to be puny petie's wife. he did not do any blood work at all, and only offered a mild anti-depressent for the "fibromyalgia" that i declined. i wanted to do more research. schwartz on the one hand pretended to be sympathetic and knew all about fibromyalgia, and on the otherhand, an arrogant jerk that was mocking me. because my eyes were going out of alignment , he had me make an appt with "his" eye dr. and that was a symptom that he noticed and recorded in my records.

when i went home, my husband was very upset that he didn't do a lyme test and had me call the office back right away. they made the appt for the middle of aug. the day before the appt , we visited friend from new hampshire at the jersey shore. she is a nurse practitioner. they were horrified by my condidtion, and when we arrived home, made a frantic phone call to my husband making sure i had the lyme test done.

went to see dr o'conner at langhorne eye assoc. he was a very angry man who was mean to my three yr old son. when i told him i had had lime( the caustic stuff that they use during house additions) thrown in my eyes when i was 5 yrs oldby the 5 yr old girl down the street ( her last name by coincidence was also o'connor) and was almost blinded. i mentioned her parents were alcholics, and his face turned red with rage. i added that i did not think that injury had anything to do with what was going on with my eyes now. (i just had to report it as part of my med history when filling out their form. i also reported i had a concussion in '82 and had double vision for 3 mos following the accident. i reported that my vision was not the same since then, but double vison did not recurr during all those yrs. i also reported that my current double vision was side to side and back then it was super-imposed. they lied and wrote in my records that i could not remember. lied and said my eyes were in fact not going out of alignment, although dr schwartz wrote in my records they were. lied and said i did not have true double vision. then o'connor has two heads?

i guess he knew from prior talking to schwartz that i didn't have optical insurence and had no money. angrily said i did not have anything medically wrong with me (i was at death's door) and came out to the front desk with me to make sure i paid in cash. again, really nasty to my son. abusive jerk! and refused to refer me to the eye muscle specialist.

in tears when i got home - actually crying at the end of appt, and o'connor was quite proud of himself. i called schwartz and told him and he arranged for my insurence to pay for it and have me see the eye muscle specialist sheryl menacker.

at the appt w/menacker, a tech did most of the tests. when i went to see menacker, and she was doing the exam, i was having trouble articulating what was going on with my vision and she angrily threw her hands down, popped a plastic ernie sesame street puppet on her finger and did the rest of the exam with the finger puppet in an attempt to humiliate me.

i had told scwhartz one of my symptoms is i could no longer wear earrings in my left ear as it would get infected. when she was supposed to be looking at how my eyes were moving, she instead was leaning uncomfortably close to me an shaking her left earring in my face. she commented at the end of the appt "if you only paid more attn to your children, you would not be here trying to get my attn." she was however, willing to refer me to "best of philly" grant t liu, a upenn neuro-opt since my complaints were neuro in origin. she asked me to call her with the date and time of my appt with liu so she could speak to him ahead of time. thinking a neuro-opt was who i needed to see, and thinking he would be a serious dr that would know his stuff, i did call her with time and date of appt thinking she would make a fool of herself.

just prior to my appt with menacker, i saw in early sept.a dr goldberg, another dr at schwartz's upenn practice in newtown , pa. i just could not go on any further. really thought i was about to die ( i'm sure i was), called and told them i was running fevers on and off, currently running a low grade fever of 100, told them the glands in my throat have been very swollen since the throat infection last winter that i did not seek med attn for. was convinced i still had some sort of serious infection. was called in to see goldberg (bow tie petie not there that day). he said i had a sinus infection (no sign of congestion) wrote a prescprition for amoxil and handed me the script for the antidepressent schwartz had in my ricords and told me i better take that too.

after taking the amoxil, i could turn my head again - though not very far to the left (that was musculo-skelatal due to the untreated whiplash). also, now my arms only moved in spastic jerks. menacker saw this , but just got an angry look on her ugly face.

when i saw schwartz again and told him my neck wasn't as stiff and i could turn my head - just not very far to the left, and also told him that now my arms would only move in spastic jerks, he was very angry that i got any abx at all. he looked both scared and angry. he told me i should not have abx as they will only do me harm. had nothing to say about my arms. was very arrogant and again psychologically manipulative when i had questions and concerns about all the serious symtoms i had . i had earlier in the summer told him i read books about fibromyalgia and i had too many serious symtoms that were not fibromyagia and was sure he had me mis-dx. found out later when i got my records he had changed my dx to "anxiety disorder". he also was interested in when i was to see grant t liu.

saw grant t liu in nov. '98. was too sick to get to the city on my own, no way i could drive. so, even though we could not afford it, my husband had to take a day off work to drive me to the appt.he dropped me off at the door and did not come in with me because of parking, and we had our oung son with us. i'm suprised i was able to find my way up to his office.

i was first seen by this very stupid young woman who was so flakey, i assumed she was just a med tech that had taken a couple of courses at phila community college. she did some of the eye exams, and giggled all thru them. one of the exams she giggles thru, i had done months later at dr Sergott's office at Wills eye hospital. by that time i had had months of abx including some i.v. abx and it was not immeadiatly obvious by looking at me that my eyes were going out of alignment like it was when i saw grant t liu and menacker and o'conner. still, they did the exam seriously at dr Sergott's office and it was determined that i was having trouble controling my eye muscles and reccommended i have continued treatment for my chronic lyme.

the stupid girl at liu's office giggling thru the exams adn not loing them seriously it turns out was a resident neurologist whose name i was told was victoria palek. vitoria has that dreary colored dishwater blond hair that looks greasy even shortly after it is washed and lays flat to her head. she had small brown eyes ( i think, my vision was so distorted) , closely set and was on the short side with a chunky, flat-chested, shapeless body.

she asked me a series of questions, but when i would start to answer them, would wave her hands in the air in a clown-like manner, laughing, not interested in the answer. she thought it hilarious that my hair had broken off and fallen out by the handfuls. i used to have lots of beautiful hair down to my hips. she asked me in a wierd tone "what about your career?". when i told her i was at home raising my children, she started laughing and fliply says "i think i know what your problem is, i'll just have a little chat with the dr and he will be out to see you" and i was escorted to the waiting room.

when they called me back to the exam rm, the had pulled the vinyl curtain to the empty exam rm next door closed. they thought severe pain, severe headaches and severe insomnia very funny and mockingly repeated the word "severe". thought it was funny that i finnally took the antidepressent schwartz was pushing on me and it did nothing. showed them that my arms only moved in spastic jerks and told them that started after i was given amoxil for what i was told was a sinus infection despite no sign of congestion. they thought this was funny.

he examined my eyes and pretended to see something wrong with my left eye. i had reported i had severe pain in my left eye that victoria thought hilariously funny. and then said "pebbles on the lenses". i asked if it was just my left eye, and he said "no, both". then said "i'm not an expert in lenses, i'll just compare them to the patient next door". theatrically leaps to the empty exam room next door, and theatrically leaps back declaring "oops, wrong call!".

i had to get angry with him to try to get an answer to what may be causing the problems with my eyes. he just kept laughing , saying "but you don't have those symptoms". i very angrilly said to him again "when OTHER people have these sypmtoms, what are they?!!!" and twice he laughs "but you don't have those symtoms". finally he tells me it could be a problem with the optic nerve or the base of the brain. i later found out i have cranial neuropathy and losing control of my eye muscles was a clue that i have babesia as well as lyme. i literally became suicidal after the abuse i got from mr grant t liu and his sidekick vitoria palek and less than a yr later did attempt suicide. the only reason i am still here, is timing.

liu wrote in my records that i was 30 yrs old. i was 38. when the subject of age came up though, he did sHow anxiety about how old he now was. perhaps he needs some of his upenn psych drugs to treat his anxiety disorder. he also reports i mt records: "occasional mild headache in the left parietal-occipital area". i told him my whole head hurt, severe headache! like my brain was swollen. he thought that funny. i had lyme encephalopathy. there is nothing funny about encephalitis headaches. he did admit i reported severe insomnia, but that was probably to support his "anxiety" dx. claims i was alert and attentive during the exam. i was not! i was like an alzhiemer patient. couldn't even remember the name of the street i live on. something they thtought was funny! says face strength and sensation were normal. no they weren't! couldn't smile with the right side of my face. couldn't wrinkle my forehead. lips felt numb. skin on face as well as back, chest and arms was burning! he didn't do a neuro exam. and thought the symptoms i did report were funny. didn't ask me about those things but i did tell him about the burning skin and numb lips. made them giggle. said i had normal strength, sensation, finger to nose touching. he never asked me to touch my finger to my nose and i showed him how my arms were shaking and i did not have good control of them. he thought that was funny! says i had normal gait and reflexes. he could see i was having trouble walking. and never tested my reflexes. drs who later tested my reflexes saw that they were not normal. said right there that tells them i have something neuro going on.

writes " i tried to assure mrs.________ that i did not think another MRI [no one had ordered an MRI yet] , visual field, or electroretinagram [don't think anyone did this either] would be necessary. i told her that i did not feel she had anything neurologic occurring which explained her visual complaints. i do not think she was satisfied with my answer. [now why could that be?] i would be glad to see her in the future should the need arise, but i did not make a follow-up appt for her.

i now have several pos pcr's including spinal fluid. pos Igm western blot. pos Igg and Igm western blot for babesia. nerve conduction studies showed carpel tunnel syndrome and i have an abnormal brain spect scan consistent with lyme encephalopathy. as well as the vacation photos of me with obvious text-book bullseye rashes taken on nantucket island. nantucket island is known to be rampant with lyme and babesia.

also, in nov. '98 i ran into someone in the health food store who told me i had lyme. i told her my test came back neg. (i'm neg on the useless lyme test upenn runs, what schwartz used to "prove" i did not have lyme). she told me that those tests often come back false neg, and told me to request the Lyme Urine Antegen Test - LUAT. i called schwartz's office, and he said to come in and he would do that test. he took a urine sample, went thru the motions of doing it. it turns out, tested me for something else, did not go thru my insurence like he did all the other tests, had me charged directly. a week after pretending to do the LUAT, had someone in his office call me and tell me my "LUAT was neg for lyme". from what i understand, that is illeagal, but schwartz so far has gotten away with it. two weeks later, i saw dr G in newtown and he did the LUAT for real. i found out you need a kit from Igenex and need to send it to them for testing. my numbers were robustly pos. but then i found out that most drs around here disregard that test and Igenex/

when i went back to menacker/o'connor's office to get my records, i told them i had lyme, was angry the refused treatment. the office staff laughed. o'connor , who was in with a patient came out to mock me and laughed at the yellow pants i had my son dressed in. and when i was struggling to put my young son in his car seat, the old man who was in o'connors office when i came there for my records walks passed and points at me and laughs. cruel people!

these drs are ignoring serious sypmtoms on purpose because they just don't believe in treating late stage/chronic lyme. guess it's not a money maker. pushing thier upenn psych drugs is. they are purposely ignoring serious symtoms and putting lies in people's records that will harm them. it's not a matter of they don't really know what lyme is and made an honest mis-dx. they are purposely harming people.

when my cousin's husband found out what condition i was in when i saw puny petie schwartz, he says that he should have put me right in the hospital and in the care of a good neurologist. i was out of schwartz's league.

upenn has a reputation for abusing/humiliating lyme patients and refusing treatment. i can't beleive we can't bring a class action suit against them and that philadelpia magazine will name the likes of scum like grant t liu as "best of philly specialist" but not interested in doing an expose of what is happening to late stage/chronic lyme patients. complaining to upenn about that dr will do no good. they know.

[This message has been edited by Caryn (edited 27 September 2004).]

Have you had a neuropsychological eval by a clinician of YOUR choice? I knew my LTD would eventually get around to doing this, so I headed them off at the pass and had my own exam. So now I have an established professional relationship with a neuropsychologist on my side, and his initial report was very thorough and my deficits were well documented in FUNCTIONAL terms. Even was a significant part of my SSDI claim, and I was approved!

That didn't stop the LTD from scheduling their own exam, but will certainly give me more ground to stand on when the report comes out.

If it were me, I would take legal action against this b**** and accuse her of practicing medicine without a license.

Also, any time you have any type of IME scheduled by a LTD carrier, have a witness to the whole entire thing. Or, record the entire thing. Both if you can. Ask the clinician, on tape, how much experience they have with Lyme and tick-borne infections. When the report comes out, have your clinician review it and comment on it. Make sure you have info on specific raw scores on various assessments so your clinician can check over these and determine if they were appropriately scored with the correct normative group.

My neuropsychologist tells me the neuropsychologist the LTD has scheduled me with is very reputable, however, this won't stop me from taking many, many precautions. We have to keep in our heads that the LTD carrier is PAYING for this exam, so if the clinician is concerned about repeat business, they will slant the report the way they want it to go.

Also, don't rely on the LTD carrier to send critical info prior to the exam. Try to get the following and either send it in advance certified or take it with you: letter from your doc summarizing your functional deficits from Lyme, any previous information generated by a neuropsychologist, a detailed job description of your job you had when you had to leave work, a good symptom list, at least one journal article about the neuropsychological effects of Lyme Disease.

Caryn ever thought about writing a book, I think you would make some $$.
My mouth was just open the whole time I read your post.

If possible, can you edit your story, and break it up instead of the long paragraphs. Makes it easier for all of us "eye sensitivity" folks...thanks for considering!

Lyme patients frequently have carpal tunnel syndrome making it too painful to dress let alone wash or blow-dry their hair!

They can frequently also just not have the energy to raise their arm high enough to reach their hair or feel steady enough in the bath tub to avoid falling!

If you don't have a LLMD you would benifit from one. There are some both in the West and East of PA.

Tring to get treatment from doctors that don't understand the complexities of lyme is a waste of your energy, time and money. Been there, tried that.

I had serious neuro lyme and was told things like I had too much time on my hands( single mom, I don't think so) and needed a vacation ( this may be true, but I take plenty)

Many of your issues may resolve themseves with good treatment, it takes a lot of time. I've had serious treatment for 18 months, and most days my brain is almost "normal" or better.

I never cease to be amazed at the low level of critical thinking in the health professions these days. One day when these faulty decisions are analyzed, the people who made them are going to be laughing stocks.

FFWW - I totally agree with you about the appearance thing. If you look good, you can't possibly be sick. If you look bad, that's evidence of a mood disorder and you're making everything up.
For anyone who's interested - my hair is quite cute if I say so myself and I spend way to much at a ritzy salon to get it cut regularly (I guess it's the tousled look). The day in question I was feeling horrible (like pass out and die Lyme horrible) so it was not a great hair day, but I certainly didn't look so unkempt as to evidence a "mood disorder!"
That examiner has serious ethical issues. She will hear about what I think of her report one way or another (letter, report her to her licensure board etc) Maybe I should send her a copy of In Style magazine to update her on current trends in hair cuts!
The worst is that she seemed very sympathetic the day of the exam and appeared to understand how ill I was feeling. This was apparently so I'd stay for the 6 1/2 hours of testing she put me through so that she could write her negative report and get her paycheck!

[This message has been edited by Larkspur (edited 05 October 2004).]