posted
Just a suggestion. It might also be nice to say thanks to the person helping you find a dr.
Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
bettyg
Unregistered
posted
yes, it's mighty nice to receive a thank you for what we do to help ou folks as volunteers.
EDITING TO ADD:
if you know of any LYME LITERATE MDS, LLMDS, in your area,***********************************
please send ME a private message; that's 2 people standign together to right of your name, and give me the following info please IF POSSIBLE:************************************
full name specialty street city, state
phone no. fax no. email or web page IF one...
do they take insurance? which ones? test & treat for co-infections IV abx if needed oral abx
cost for 1st visit & length of time followups & length of time
the info you share with me will be shared with those having NATIONWIDE LLMD LIST ONLY! ***************************************
also, if you get INACCURATE INFO from any of us by private message, please REPLY to person sending it. tell us specifically WHAT IS WRONG, and the changes to add/delete, etc.
that's how we can hopefully keep accurate records to help you QUICKLY and efficiently!
posted
Hi, well I've tested neg. 2-3 times. My journey began in the summer of 06. I had a spot on the top of my head that I thought was a bite, after a few days my lymph gland down the back of my neck swelled. After a dr. visit, they said it must have been an allergic reaction to something (like new shampoo) and would probalby take a week to clear up. It was very painful for at least a week. Never had a fever etc. but shortly after had weird things begin to happen. I started waking at night, my arms were tingling (they said it's probably carpal tunnel) I began to see floaters (the eye dr. said, all is normal), then a few mos.I started to get joint pain in my hip. It became debilitating, they said I had bursitits and itb, went through phys. therapy and steriod inejections, it helped only some. Then it became more painful and burning began to go down my calves, it's still there! they say I have sacroilitis and have scheduled me for injections in Nov. for this. In the meantime I've begun to regularly get burning in the area where the lymph originally swelled (this bothers me more than anything, as it is in my neck area) I've had some gastro-intestinal episodes and a few severe headaches at the base of my skull. My arms get tingly and my ankles hurt. I paid for extra bloodwork and my red blood count is off a little, low and my enzymes are off (just got this back this week). I've contacted the center in Hermitage, PA (it's 1 1/2 hrs away) and am praying whether or not that is where to go, I'll most likely have to pay out of pocket. My ins. co. stinks! my dr. have requested mri's and they have denied my right to them. I've also done a lot of chiropractic (traction, laser, ultrasound to try and relieve the burning in my legs, some help but it doesn't last). Thanks! Do these sound like lyme symptoms, that I should proceed with a lyme's specific dr?
Posts: 3 | From PA | Registered: Oct 2007
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
Reenie - I sent you a private message. Post your information as a new topic. Nobody will be reading it here. If you contacted Dr. S. you're on the right track. He's excellent.
UP, UP, UP!!! Posts: 2097 | From PA | Registered: Jan 2004
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posted
I have been lucky, I have an understanding PCP, who will write me whatever scripts I need, however she needs some guidance, and has urged me to go to a LLMD.
I am a year into treatment I think we need a new perspective.
I live in north central PA, and my insurance covers many western PA doctors.
thanks
Posts: 33 | From North Central PA | Registered: Jan 2007
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
You need to copy what you've written here into a new post so people will see it. I sent you a private message.
Posts: 2097 | From PA | Registered: Jan 2004
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
I sent information to both Reenie and Ganjagal and haven't heard anything back from them.
posted
I am seeking a specialist in lymne disease. I live in San Francisco, CA. Thank You, Kimberly
Posts: 2 | From San Francisco, CA | Registered: Nov 2007
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bettyg
Unregistered
posted
earlier, i sent kimberley a note to start HER OWN thread here plus sent her my newbie package.
forgot to say to kimberley,
please delete your thread HERE on lymetoo's post; you'll be starting your own and MORE IN-DEPTH than what you left here..
here's how to delete: click on paper/pencil icon to right of your name here. it opens up both subject line if you started it, and also body text.
now go to top left hand corner and click DELETE POST, HIT ENTER, and it's gone for good..
disregard moderator's statement; you posted it; you can remove it. save these instructions for in the future ok! big thanks!
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posted
Hi. I am new to this page, so I hope I am doing this correctly. I was diagnosed with Lyme this past August. Although I had 3 weeks of treatment with oral doxy, I have been experiencing cold and burning sensations in my calves and arms; I have slight tremor in my hands; I am supersensitive to temperature extremes on my scalp; and I have muscle weakness. Neurologist rules out MS but I haven't been put on any treatment for Lyme. I am almost positive it is late-stage Lyme based on what I have been reading on Internet. I am really depressed and scared and would love to seek help from a Lyme-oriented physician. Can someone recommend such a person in the Northern NJ area? Thank you for treading this lengthy post!
Posts: 1 | From New Jersey | Registered: Dec 2007
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posted
this is a big public thank you for tu tu thanks for all your help
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hi Tutu!
Just a thought....
Maybe if you change the title to "A message to New Posters etc...(the rest of your title)", it might not look like you are calling them here?
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
up; i just copied tincup's post about DO/DO NOTS IN POSTING INTO ON BOARD! READ CAREFULLY! ************************************************ i put it in post at top from me so newbies would see this.
I was sure it was here from earlier, but must be in another top sticky feature...uffda. -------------
What happened to Sarah today is not the first time this has happened to members here... nor will it be the last.
There are always people (idiots) watching this board and keeping track of the things we say. Some patients think we just say that because we are paranoid.
Others.. who have had this kind of stuff to deal with in the past because of their activism efforts over the years... know better.
Sooooooooooo... LISTEN UP!
Please try to remember the following simple rules to protect yourself and others.
1. Do NOT use your name when posting on the internet. Ever.
2. NEVER post about your child or your family or their treatment!
3. Do NOT use your doctors names.
4. Do not post your address or phone number on the board. EVER!
5. Do not post your insurance companies name. ********************************************
6. Do not give details as to what treatment you or your family are doing.
7. Stay away from the idiot sites where there is a lot of trash and evil. If you lay down with the dogs, you wake up with fleas.
8. If you are upset by the actions of others, don't let them know it by posting it all over the place. That is what they want. They crave attention.---------------------------------
9. Never respond to a message from those you don't know and give details about yourself or your treatment.
10. Watch what you say at all times or it could come back to bite you on the butt.
if you know of any LYME LITERATE MDS, LLMDS, in your area,***********************************
please send ME a private message; that's 2 people standign together to right of your name, and give me the following info please IF POSSIBLE:************************************
full name specialty street city, state
phone no. fax no. email or web page IF one...
do they take insurance? which ones? test & treat for co-infections IV abx if needed oral abx
cost for 1st visit & length of time followups & length of time
the info you share with me will be shared with those having NATIONWIDE LLMD LIST ONLY! ***************************************
also, if you get INACCURATE INFO from any of us by private message, please REPLY to person sending it. tell us specifically WHAT IS WRONG, and the changes to add/delete, etc.
that's how we can hopefully keep accurate records to help you QUICKLY and efficiently!
posted
My apologies to everyone for using a Dr's full name. As I read several postings, his name was mentioned several times, otherwise I wouldn't have known that other people had also had him as their Dr. I honestly wasn't trying to trash him publically, but I agree that full names should not be posted. I tried to edit it, but I see the name still appears. Sorry! (to him and all concerned!)
Posts: 2 | From Westfield, MA | Registered: Apr 2008
| IP: Logged |
bettyg
Unregistered
posted
to all reading this,
please go to MY PROFILE and ENABLE PRIVATE MESSAGES; that is how we send llmd, lyme literate md names, to YOU !!! SAVE this.
i also send you my 123 page newbie package with a table of contents done except for all my SSDI, Social security disability insurance, info !!!
posted
I am new to this forum, but not so new to lymes. I want to advise all of our members about a bill about to be passed in Canada. Bill C-51 . Which will restrict our ability to get products to help with our recovery. This is a very important bill; and detrimental to all of us with lymes. This bill is also coming down to the U.S. in 2009; so I would think that we should all support each other in petitioning on both sides of the border for the sake of our Health. Please read about the bill; http://www.stopc51.com/
I am taking numerous natural health products which are continually helping me improve and function on a day to day level; if this bill passes, "We Will All Wither Away"..... This Bill is Detrimental to anyone and everyone that is concerned about their health. It is also an infringement of our rights to choose, and our Free-Will. They are trying to quietly pass this bill; but we cannot allow that!
Please Help Each and Every One of Us.... Thank you! Posts: 1 | From canada | Registered: Jul 2008
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bettyg
Unregistered
posted
life w/lymes...welcome; glad you found us.
please copy your entire post and start a NEW POST in ACTIVISM forum.
paste it there, and go to lower left hand corner for all replies to go to you.
also break it up some more by leaving 2 BLANK LINES BETWEEN EACH PARAGRAPH YOU SHOWED .... we're neuro lymies here who need blank space to comprehend and read things.
when you paste it there, it will be easy to hit enter 3 TIMES between each paragraph. now i'll go and read your link. betty
EDITED TO ADD THIS:
Please have someone summarize thie bill; way to many pages to look it and in TIMESNEWROMAN WHICH IS ILLEGIBLE for many of us with LOW VISION!!
SORRY, i did not like your petition; you can NOT read it in its entirety!!
if you could get something showing the continuous content instead of 2-3 lines only appearing, might sign....BUT NOT AS IS! ******************************************
if you can post your ENTIRE PETITION ON YOUR POST HERE, and ALL CONTENT is shown as one CONTINUOUS text, please do this.
your petition is NOT USER-FRIENDLY AT ALL; i'm sorry to say but way to challenging for neuro lyme patients!
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posted
: I have never joined a forum before so I'm trying to figure out how to do this. : I will tell my story after I hear from someone, so that I know I posted right.
-------------------- dina Posts: 1 | From southern in | Registered: Aug 2008
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posted
I am a horticulturist by profession and actively work in gardens almost daily where about once a month my husband removes a deer tick that has attached to my body. I have never seen an obvious rash. I am also 42 years old and have been in this profession for many years laboring hard and fast with any task necessary to be performed. I am also(or had been)a rather athletic and passionate excerciser. For approximately three years now I have been going to my general practitioner complaining of joint pains here, joint pains there. None of the pains seem to correlate to any particular work or excercise recently performed. I am familiar with tired muscles from excercise and I am familiar with strains that I do get occasionally from certain work performed. The random aches and sharp pains appear for a while in one location on and off. The pains tend to change location without rhyme or reason. For the past year and a half I have been experiencing excruciating headaches, of which over the counter aspirins and medications do not cure. The headaches can last two and occasionally even three days. I have been prescribed Maxalt to releive the headaches. I have been getting hives one or two per day and then they dissappear, only to reappear again a week or three later. I have attempted to correlate the hives to food, or clothing or environment with no clear connection determined. Just last week I started feeling tingling sensations in my arms at random times and even thought I was feeling it my face. Bizarre. About four weeks ago, I again had a tick attached, my husband removed it (they are always stuck on, not just sitting there, as I do find them crawling on me occasionally while in the field too) I didn't think too much about it, but on Saturday and Sunday I had become so ill with what seemed to be a cold, sniffles, body aches in the neck I thought I would be feeling the cold for a week but Monday(Labor Day) I woke up feeling perfectly fine. I went to the Dr and she has now put me on Doxycycline. Four days after I was really feeling the neck pains.
I am baffled as I have had numerous blood tests over the past few years. I do accept that I have worked hard, tough labor for 20 years creating gardens and moving things too heavy (probably) for a woman of my stature. I operate a Fine Gardening Business with my husband which is a VERY big strain on mentally and physically. Is my body reacting to stress, years of hard work, years of hard core excercize or Lyme Disease? I am puzzled as I do not eat red meat(is this the problem?), I avoid junk food mostly, eat as much organic as is available, eat lots of raw and homegrown produce...I am frustrated and sad as this is becoming a real challenge for my desire to be active in my daily life.
I hope this info is helpful and not too much. I look forward to hearing from you soon!
nancy M
Posts: 6 | From annapolis, maryland | Registered: Sep 2008
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posted
ive had symptoms for about 5 years now. just recently though did they test me positive for lyme. odd thing is i never had a rash. dont no if this is common or not.right now i cant work because my body is basically breaking down. very painfull as well
Posts: 4 | From holiday, fl | Registered: Jan 2009
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Please post your request in a New Topic in the Seeking a Doctor forum. Our members who help with LLMD referrals look for "new" requests and don't go back to look a older Topics that have already been answered.
Also, indicate the cities in the vicinity of your area rather than zip code as their lists are based on LLMD's near cities within a state.
I'm now "Closing" this Topic so that users requesting LLMD referrals will not be able to post the request in this Topic.
Thanks and take care,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
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