Topic: HELP! need s llmd that takes insurence. pref. PA/NJ/NY. i've been reinfected ...
Caryn
Frequent Contributor (1K+ posts)
Member # 366
posted
and although i did have a good llmd in NJ that i went to for several yrs, she was very caring, brought me back from the dead, but i had been very sick w/multiple lyme and babesia infections for yrs ( two of my known infections were from our two visits to nantucket island where babesia is known to be rampant since 1970 and turns out i discovered we unwittingly took photos of me with textbook rash.)
mepron with zith for several months helped so much, but i was still so sick. severe vomiting made it impossible for me to continue oral meds and also my dr had her hands tied in how much she could treat me.
i have recently ( 2 or so months ago ) been rebitten. no rash that i could find, but while bathing ( after doing gardening in lyme infested area ) i did see tiny tiny ticks, but didn't even think they were deer ticks at the time. so much for some drs thinking i'm "paranoid" about lyme. if so i would not be in such dire straights. i just thought they were strange spider bugs.
my left knee has swollen up today. i have never had swollen joints from lyme before. everything else, especially severe neuro stuff, but not swollen joints. how UPENN drs, in addition to their negative USELESS lyme test "proved" i did not have lyme.
the left side of my jaw has been a bit puffed compared to the right and there is a spot that is quite sore to the touch, and this is new, shortly after discovering the tiny black "spider bugs" in my bath. but my "agreeable" ( will continue to prescribe the meds my expensive llmd had me on - including high dose fentinyl), but when it comes to agressively treating lyme, even this pretty obvious new infection, he has announced to me that he "agrees to disagree". well at least i can get symptom meds each month for just a co-pay.
my whole family has this. it was 18 yrs ago that i first got the killer infection from a vacation on nantucket island. ( we have photos. our nine month old nursing baby in the photos. just did not know what hit us). my husband still opens car doors for me - after more than 25 yrs of being together. i have never had to clean the kitty litter box once we moved in together even though he had a dog, but nver cats and my kitty was a bit cold to him at first. but i am not allowed to utter the "L" word.
a lot of this had to do with the people arough us and how they reacted to the "hypochodriacs self dx". our daughter, yrs later i learned was being bulllied big time at newtown friends school by the daughter of anat rachael fiengold, pediatric infectious disease specialist at cooper hospital, camden and of the allen steere variety, as well as this kid's friends.
and i just learned from a mom recently whose young son would come home in tears from preschool there that the school has a rep for allowing the overprivaligded and often not so well raised kids to seriously bully the kids on scholership there. - our daughter was not on scholership the first two yrs there, we paid the full almost $10,000 a yr, even though we really could not afford it. our daughter was brilliant, but it was clear something was wrong and she needed to be in a small classroom.
once we found the photos, and she tested pos on stonybrooks elisa ( she is the only one in the family who has a pos elisa ) and the test dr jones did from the lab in florida showed the lyme and babesia in her blood. she tests neg by PCR. doc jones helped our children emensely. but my husband went to the last office visit w/her as i was too sick, and he tends to ignore stuff as he just does not want to believe this is happening to us. he has a pos pcr done in 2003, and despite memory and other stuff, believes himself to be asymptomatic and has decided not to treat.
i have multiple pos pcr's including one of my spinal fluid just one week after seeing roger e niemans, infectious disease specialist in abington pa who reagards himself as the area's top lyme specialist along with his colleague - forget the idiots name. they severly critized another pa llmd (i was not able to afford to see but has helped many) in a newspaper article just 6 months after i saw him. niemans claiming that he never saw a patient in pa with babesia or other coinfections. he saw me gravely ill with lyme and babesia - 2 infections from nantucket - and wrote in my records i no longer had lyme if in fact i ever had it to begin with. and ignored the lyme rash on my right foot.
well, my pcr for babesia came back neg from MDL. but then, a dr did a western blot for babs from MDL. robustly pos for babs both Igg and Igm. but MDL canceled this test. i also have abnormal brain spect scan from columbia presbyterian in NYC. and the first pos lyme test i had - the LUAT from IgeneX - my lab of choice but cannot afford to be tested there as my insurence won't pay for it and drs just laugh at my pos - robustly pos - test from IgeneX. niemans going to far as to use my med records to put down IgeneX lab as a "bogus lab using non-FDA approved tests".
OK, i am rambling. i was like an alzhiemer patient for yrs. my mother died decades ago. i have no real family to go to. inlaws can be less than fun. my husband will go to the ends of the earth for me, except when it come to "chronic lyme". he is tired and overwhelmed and does not even recognize how much it affects him. or our kids. he decided on his own that our youngest does not need to see dr jones anymore. "you can't just keep taking antibiotics for yrs. after a few months, they no longer work." not true, but arguing is useless at best.
so i need a dr who takes insurence and is a true llmd, as i have serious lingering symptoms from the past infections that went yrs undx, and now new symptoms never experiences before, more than just the swollen sore knee and jaw. our oldest is off to college.
i have not been able to work all these yrs and was turned down for social security by the old lady in harrisburg who refused to aknowlege my photos and pos tests, saying i did not have lyme and was not disabled until i got the abnormal brain spect scan from columbia presbyterian. then she agreed i was disabled, but said, despite my easialy dated photos from nantucket in '91 and '93 and med records indicating abnormal symptoms ( very very sick all thru my pregnancy with my second child as well as an OB-GYN visit in june '96 where it was determined i had abnormal heart symptoms and they just guessed "heart murmur?", but never alerted me or sent me to a specialist.) but had to go by neimans records and upenn records stating i had nothing medically wrong - just "anxiety syndrome" even though it is quite obvious they were committing malpractice.
so much more to say. i almost died in the "experts care". and i am so lost. so sick. so tired. have a child i am trying to pack off to college and another ready to go back to school and we just moved a few months ago, so much still unpacked and in the garage where it does not belong. no real help. ( although we have some close friends who did so much for us when we moved and if i ask, they would give us more help, but i just do not want to impose).
and, as much as our friends love me, they just do not understand what lyme disease is and all the politics surrounding it. just seems like this can't really be happening. but it is. and is does not help, that although it has done a number on my looks, especially my hair ( had lots of gorgeious silky long hair down to my hips that by '96 had broken off and fallen out by the handfuls. upenn grant t liu and his side kick victoria palek thought this , in addition to the severe pain, severe insomnia and severe neuro symptoms quite hilarious.
i still can't grow my hair back. but at 48, almost 49 now, i still am not grey except for a few strands no one seems to see but me. and i do not have any wrinkles. and i am small boned with long thin legs that still appear athletic even though i have spent most of the last 18 yrs laying in bed or on the sofa. i still get carded. i rarely go out much ( more now that my husband started playing the sax again a few yrs back and has a band and they are now playing out ).
i had to go to the dermatologist a couple of months ago due to strange lumps that would just appear. well, i inherited good genes despite my yrs in the sun with no sunscreen. even though i told him how sick i was with lyme, i guess just by my appearence, he was amazed at how "healthy" i was. i'm not. they just don't get it.
wow! i am a quiet person by nature. i don't talk much. i spend hours, days and years isolated and alone. and i am away from the computer for sometimes weeks and even months. so i guess i have so much bottled up, i tend to type long posts when i do come to the computer. tired now. i'm not even going to reread my post.
Posts: 1093 | Registered: Nov 2000
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Caryn, you need to get on the computer more because I think it is great therapy for you! You really have alot going on in your life now and I am sending you some info.
You'll be fine as soon as you see one of the drs. from list I am sending. Everything is going to be okay.
So glad you got alot off your mind and now it's time to find that one special dr. that is going to listen to you. It is your turn dear!
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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bettyg
Unregistered
posted
welcome caryn,
after getting a good night's sleep, please go back and make your long paragraphs SHORTER and double space between each one as you did WELL on your entire post.
they are just too long for us severely neuro lyme folks to comprehend and read; use my guidelines below ok huge thanks and hugs ...
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Please check your private messages for the LLMD list for PA, NJ, and NY and do join in the
discussion in our ``medical section'' for additional help, education and support. It's a great place to learn more about this illness.
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huge thanks and hugs ...
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