I need help with a situation and am hoping that you will help me. You are always so kind to do that.
I will try to explain this situation as briefly, and as unbiased, as possible. I have a friend, actually my daughter-in-laws mother(who I will refer to as Linda), who is a nurse by training, and who on July 7 discovered a black speck in her skin.
She removed the object, and then during the next few days, maybe a week, noticed a rash at the site and then other rashes developed at other locations on her body.
The only other symptoms that Linda has reported are some headaches. She has seen her family doctor, a dermatologist, and now a very prominent ID in her area. I might add that Linda lives about two hours from the LLMD that my husband sees.
Linda has been given a 21-day supply of amoxicillin by the family doctor, but has been afraid to take it, for fear that it would interfere with other tests that she might be given by the other doctors with whom she had made appointments.
The dermagologist said that the rashes were not an indication that she had been infected with Lyme or other tick bourn diseases (TBDs).
The ID doctor ran a Lyme test (I do not know which test or what lab), and the results were negative for Lyme. However, that doctor feels it advisable to do a spinal tap to confirm whether Linda does or doesn't have Lyme, and said that she should be treated with IV antibiotics (I do not know what antibiotic, for how long, etc.)
Since you are the people who have experienced a variety of TBDs, been diagnosed, treated, sometimes mistreated, and experienced the perils of these diseases, I am asking that you respond here with your best advice to my dear friend.
Linda is a very intelligent person, however she does not have a computer, so is not able to search this site and gain the knowledge it has to offer. I will copy the thread and send it to her.
I know that I am asking for a lot from you, but I truly care about Linda, and would like for her to hear as much advice from others as possible, and you are certainly the experts on this subject.
Thank you so much. You are always there when I need you.
Nancy
[ 17. October 2006, 11:20 AM: Message edited by: Nancy-FL ]
Posted by trueblue (Member # 7348) on :
Hi Nancy, I'm sure someone more able to make sense will be along anytime now with better advice than me.
I just wanted to say in the interim(sp?) "just say no" to a lumbar puncture. Speaking from personal experience this is not something you want to do if there are other alternatives.
I do think her best bet would be to get to an actual LLMD. When she calls to make an appoinment she can ask if taking the Amoxy would mess with the tests.
She was not exposed that long ago but the longer she waits the more chance of developing more and worse symptoms.
Please ask her to do this soon. There are so many of us in places we wish we weren't from not knowing to treat early or not being diagnosed for too long. This is not somewhere you want to wind up if you have a choice.
I'm sorry, I wish I was more eloquent but just would like to see your friend helped quickly.
Posted by 5dana8 (Member # 7935) on :
Hi nancy
My head has an appointment with a pillow but I would like to help if I can.
I agree with True. Find a LLMD asap. I also agree that if posible she should be persuaded to start the amox right away. She's in the "critical hour" and each day can mean the difference between chronic & cured.
Re: testing: your average generic lyme test is pretty worthless. I hope she can find a good LLMD & get tested thru igenex. And a good LLMD will test & treat co-infections as well.
I have read spinal taps have a low yield rate. Sorry I can not remmeber where the article is right now-you may want to do a search here.
Here is something you could print out for her to read. Reason why you can have lyme & still test negative by Tom Grier:
good luck & I hope she can get treatment started soon
Posted by bettyg (Member # 6147) on :
Nancy, what a great friend you are to have!
I too recommend the above as well; LLMD only NO ID! no spinal tap; I have not done this, but read horror stories here only!
RASH, this might be celiac disease or gluten intolerance! We had a gastrologist speak last week about this rash being like we get on our elbows, knees, and butt area. I was surprised on that.
Thru food allergy testing, I learned I'm allergic to:
gluten --- wheat and rye foods
casein -- cow's milk, cheeses, egg whites, & garlic! plus being a diabetes 2 ... non insulin.
21 days is squat, BUT SHE'S GOT TO BE TAKING IT NOW! Linda, don't worry about other tests; deal with what you know NOW! take the antibiotic to KILL THE SPIROCHETES IN YOUR BODY NOW!
Heavens, if I only knew 36 years ago I had chronic lyme, I would have been CURED, and not years of hell 24/7!
None of us CHRONIC lymies want to see you walking in OUR footsteps! Take action now please. Bettyg Posted by Lymetoo (Member # 743) on :
First and foremost:
GET EVALUATED BY A LYME LITERATE MD....not an ID dr. Sorry, but they are among the WORST drs for dxing and treating Lyme disease.
Basically, an ID dr [we call them ducks, as in quack, quack] IF he/she diagnoses someone with Lyme, will only treat them for 4 wks AT MOST.
What then? Allow the Lyme spirochetes to come out and play? Allow them to set up permanent housekeeping in your body?
Most of us are chronic because a dr or drs never thought to look for Lyme, or didn't use a specialty lab for the testing.
Once the window of opportunity for killing out the Lyme is closed, you're in big trouble.
Please find a dr who will treat you NOW, not weeks from now....and I would ask for doxycycline, not amoxy.
Several other diseases could have been picked up by the one tick bite, so getting evaluated by an LLMD will ensure that all coinfections are found and properly treated.
You have a great friend in Nancy! I hope you will one day thank her for doing this for you.
PS....I'd pass on that spinal tap if I were you. It's only 20% accurate in finding Lyme disease. If it comes back negative, the insurance co will then deny your treatment for Lyme.
I may live close to Linda...close enough to speak to her live and in person....
Possibly accompany her to a doctor...
Spinals are useless...they are primarily used by ducks to rule out lyme disease.
I do not believe ammoxy will interfere with tests done by Igenex or MDL or Stonybrook....
Any other lab is useless...
If this duck wants to put her on IV abx immediately... Go for it!
In the meantime get to a LLMD....
The rashes one can and do get do not have to be the typical bullseye...
Mine were not...
pm me if you want my phone and address and if you want my personal intervention.....
zman
Posted by stymielymie (Member # 10044) on :
Bull- eye rashes in and of themselves ARE DIAGNOTIC OF LYME DISEASE AND AS SUCH, TREATED AS LYME DISEASE.\ TESTS REALLY DON'T MEAN ANYTHING AT THIS POINT. the bullseye rash is enough evidence to treat. and without the rash, but the presents of a tick, then treatment prophylaxtically is indicated.
i live on the east coast if you need a doc over here.
doxy is the drug of choice for intial bite due to the fact that it kills bb and many coinfections also.
abx asap docdave
Posted by Nancy-FL (Member # 7986) on :
Thank you all for your responses. I appreciate you taking the time to help in this situation.
I failed to mention that Linda is allergic to doxycycline, thus the Rx for the amoxicillin.
Much of what you have said above is what I have told Linda, but hearing it from all of you will have more impact, I'm sure.
It is very hard to explain to someone the importance of seeing an LLMD who thoroughly understands Lyme rather than the others who may have a more visual presence in the medical community. Your advice on this is right on.
Trueblue - Your advice is always good; thanks for everything.
5dana8 - I appreciate the links and will print out everything from those to accompany the copied thread.
Lymetoo - When you say "window of opportunity", is there a specific time, like three months from the time of the bite, or what? By the way, I see your posts frequently, and you are so diligent about giving help to those in need; was no surprise to see you here. Was hoping to rouse a rant from Cave and/or Tincup as well. Where you are eloquent; no mincing words with them, for sure. I love it!
Tony - You are so kind to offer to go with Linda to an LLMD, but she is not anywhere near you. I will keep your services in mind and hope that no one needs them.
Stymie - Thanks, doc! Always impressive to have a professional in the mix.
Again, you "guys" are the greatest. I knew I could count on you. And if there are others out there who can lend support, I am waiting to hear what you have to say. Even if you feel you have nothing new to add, saying the same things, from your experiences, will confirm what others have already written.
Interesting as to how one person may say something that might just strike a chord that the others didn't, so keep them coming, if you will be so kind.
Nancy
[ 17. October 2006, 12:09 PM: Message edited by: Nancy-FL ]
Posted by Nancy-FL (Member # 7986) on :
![[Roll Eyes]](rolleyes.gif)