posted
Hi. I really need some help finding a LLMD inSuffolk County Long Island NY& read this is the place to find it!
I read about Dr. Barrascano & have tried calling him but no one answers the phone - I read about some problems that occured with him so am not sure if he is still practicing or accepting patients.
I have read all the info about co infections, symptoms, diagnostic hints and guidelines. I would like to think I know more now than I did before - and more than the 10 doctors I have seen apparently know about this disease which is unfortunate to say the least.
If this is what I have - 10 doctors could not figure it out - told me to let it go, gotta get over it at some point, see a shrink, take some xanax.
NO one listened out of primarys, rheumo, endocrinologist, ID, 2 neuros (1 said now we'll watch & wait - for what - for all my hair to fall out and my life to fall apart?
I had to ask the ID to run a lyme test to which he said it is nonspecific anyway and you would need a spinal tap for more info. As if then I should not get the test and stay sick? I have read that even spinal taps are not sensitive or specific enough & that other tests are better. I have had 2 spinal taps in the past after the spinal problems started. But I did not have the same symptoms then.
So I am waiting on western blot test results but want to -- need to find an LLMD/ILADS member who knows this disease, how to treat it and any coinfections properly.
My life has been pretty much over for 3 years - I need someone to help me please. I am sure this is what I have - it looks like I copied the internet lists of symptoms onto my own recorded symptoms.
I have edited my posts into one, hopefully clearer post. I have listed history, onset of symptoms over last 8 months below which all began approximately 6 months post 2 spinal fusion surgeries.
I may have had this before the surgeries - perhaps the trauma made it worse and more active. All I know is in 06 I was a healthy happy energetic 28 year old & I am now 31 and unwell all of the time & getting worse.
Since the sudden onset of my spinal problems, which happened literally overnight in 06, my life has totally changed. The spinal problems happening so suddenly along with other symptoms are all unexplained by over, now 30 doctors - including the spinal ones.
I would appreciate any help you can offer. I know these 2 posts are long, but I am trying to include everything I read that posters want to see. I tried to edit to make everything more readable, understandable and clear - I hope I suceeded in doing so. THANK YOU SO MUCH FOR YOUR TIME AND ANY HELP YOU CAN OFFER. Does anyone know if Dr. Barrascano is still practicing? Thanks again!!!!! And thank you for support!
[ 08-21-2009, 02:36 PM: Message edited by: karmaa55 ]
Posts: 9 | From SUFFOLK COUNTY LONG ISLAND NY NEAR ISLIP & HUNTINGTON, PATCHOGUE, RONKONKOMA | Registered: Aug 2009
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posted
I read a post about wanting new posts to include symptoms, history, etc so I will add that info now. I was not going to leave a long post with all of this info but other posts ask to leave it as members are leary of giving out doctors names.
I am a 31 year old female with sudden onset of spinal probs at the age of 28 in 06 -osteomyelitic/osteoarthritic changes in the thoracic & lumbar spine.
For 2 years, dozens of drs could not figure out what caused my spinal probs - hospital that I went to didn't do spinal tap or bone biopsy at time - took 2 years to get a surgeon to do those procedures at which time, if there was an infection, it had destroyed the bone enough not to be able to identify the cause of the bone swelling and loss.
Since then, I run low grade fevers, have no energy, weakness, insomnia - I am not the same person.I had fusion surgeries on both t-spine & l-spine in 6/08, blood transfusions then stayed with my parents who live in a high tick area for five months post surgery.
Six months after surgeries, new symptoms developed & have been developing, changing, moving since.
First symptoms 6 mos post surg was high blood pressure, stiff and tight unable to move neck & red skin to any heat (like PT pool) Now the skin on neck is actually rippled like bumpy looking under skin when it is pulled tight.
I have severeal rashes - one dr said livedo reticularis, one said just bluish red discoloration, also get red bumpy skin rashes - look like bursted little red veins at times, worsens with any heat. Sun caused flouro red rash on chest.
I have also been experiencing other sensations like crawling, tingling, water dropping, sharp stabbing head pains, pins & needles, numbness, prickling, stinging, headaches --The pains in my head always happen - or cause dents in my skull. I can feel pulse in those spots and is usually warm.
A lot of symptoms seems to come and go, get slightly better than worse - or move to different spots on body. I get transitory red spots that itch that appear where skin gets inflamed, back stiffness.
Lately I am having a ton of floaters, I get a feeling with the struggling vision like I am not in my body, can't take in what I can see, hallucinations out of corners of my eyes,wavy lines, trails, embossed like images.
There are over probably 50 symptoms in past 6 mos to even before surgery - splinter hemhorrhages, unexplained sore soles and ulcer like pressure spots on my heels, severe constipation or diarrhea, swelling around outer ankle bones and wrists and top of foot that drs say are fat deposits but they aren't because they change, swell more - they are soft fleshy swellings - no like edema but puffy watery swellings.
I have been having alot of trouble losing weight - but did lose 30 lbs in under 3 weeks several months ago with appetite loss, nausea, gagging, cough, clearing throat, taking deep sigh breaths, feel like can't breath sometimes - a ton of problems - almost like they developed one at a time.
I also noticed swelling in submandibular lymph node on jawbone - and tons of pains in that area. Deep ear pain, ear cartalidge pain - unusual red spots on ears or skin from any pressure or itching.
I get a lot of sudden shocklike pains in tip of my nose, fingertips, toes, and body - pain even under the fingernails and toenails. The sensations occur all over - worst in my face and head, skull, jaw and neck/throat area but lately getting them in my hands and feet - some parts of legs, arms.
I get flushed, low fevers (some occasional very high fevers), clammy all of the time, excessive sweating from forearms and other spots worse with any exercise which I have been trying to help get better at all, bad chills, shaking chills, shaking chills after eating anything cold, really enlarged pores on scalp, arms and face.
MY HAIR is ALL falling out - FAST!!And I have tiny red pinpoint (angiomas) all over the place. ID dr said most of my symptoms are not even lyme symptoms - that low grade fevers are not lyme symptoms. All over online all of these things - are listed as symptoms. Does anyone else get these things?
I seem to take alot of deep sighs, go through weeks with heart pounding or feeling like extra off beats - sometimes when I lie down to sleep it literally feels like air is going to stop going to my brain- very scary feeling. I get off balance, fall to side very easily
Had alot of symptoms of hypothyroid and other autoimmune diseases - I had a red raised bumpy rash on my face but do not have lupus. I have been tested for everything - except lyme.
My dr ran a blood smear for babesiosis for some reason without testing for lyme which came back negative. I read that a blood smear is only helpful early on in co infection that PCR is better but he did the blood smear.
Had out of range HLA-B27 blood test, false positive lupus screen test, elevated ESR/SED rate, elevated Alk Phos liver enzymes, some C Reactive protein elevated.
Vestibular balance test said saccades are abnormal - possible CNS involvement and low horizontal gain causing oscillopia - just alot of weird results - no one putting anything together.
Doctors pass me on to the next doctor - only want to hear symptoms in their specialty - no one has or will look at big picture or even consider there is one - and I know there is - This is it - this has to be it - it is the last option -
I really am not feeling well so I am sorry about posting too long, or long sentences - I was not going to leave a long post with tons of symptoms as to overwhelm anyone but a few posts said to make sure you leave info, history, etc so I did not want to leave too little.
I understand the visual problems - I am having them myself very badly so I did not mean to make it harder for anyone. I did edit this post with more paragraphs and spaces so hopefully this helps.
I just get feeling that I cannot sit here - it's like irritabilty or frustration but in your body - so I had just wanted to get down everything I could. I really need help and didn't want to leave too little info after reading those posts, I wanted to make sure I listed everything other posters requested. I am sorry if I left too much - I was trying to avoid going on and on believe it or not!
I would appreciate ANY HELP. PLEASE! THANK YOU
I just want to feel better - please please help share the names of some great caring - long island ny suffolk or nassau county doctors or Any questions, I will answer via email or reply on here. THANK YOU!!!Best wishes to all of you for recovery and good health.
[ 08-21-2009, 02:35 PM: Message edited by: karmaa55 ]
Posts: 9 | From SUFFOLK COUNTY LONG ISLAND NY NEAR ISLIP & HUNTINGTON, PATCHOGUE, RONKONKOMA | Registered: Aug 2009
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, karmaa, so happy you found this site because we can help you and you will find the right llmd and be on your way to better days.
I am sending you some info and you'll have the help and support you need from us.
It would be a great help for others if you could please use double space when posting, it is better for others with neuro lyme and eyesite issues.
To change to double space, click on pencil, 3rd box to the right of your name and just edit, thank you for this.
-------------------- 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
ye, please break up your 2 long posts into MANY, SHORT paragraphs and double space between EACH PARAGRAPH so we neuro lyme folks can read and comprehend; we can't read as is.
use my guidelines below please, and more helpful info for you. hugs/kisses
sici sent you names already; so i won't resend same names
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!
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I really need some help finding a LLMD inSuffolk County Long Island NY& read this is the place to find it! ![[confused]](graemlins/confused.gif)
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MY HAIR is ALL falling out - FAST!!And I have tiny red pinpoint (angiomas) all over the place. ID dr said most of my symptoms are not even lyme symptoms - that low grade fevers are not lyme symptoms. All over online all of these things - are listed as symptoms. Does anyone else get these things?![[dizzy]](graemlins/dizzy.gif)
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