Hi. I saw the family doc today. His partner was the one who saw my 'bite' last week and deemed it Lymes. It was a bullseye rash, and four days after it appeared, I've had SEVERE all over joint pain and fatigue, headache, fluish. I feel like I've been hit by a truck. Anyway, my doc today says that since my Lyme titre is negative, then I don't have Lymes. So he didn't give me antibiotics because he said I don't need them. He feels that since I was bitten 8 weeks ago, I would have gotten sick long before now. And the titre would definitely have been positive by now too. Especially because Lymes would cause a bullseye rash all over and not just one rogue spot. (He doesn't know what the rash all over my face is, but it's not Lymes). So that's it on the Lymes front. Thanks for all of your input & help! Best wishes for great health for each of you! )
Posted by Keebler (Member # 12673) on :
- Hi, Kell.
Glad you found this site. I can't yet read your post but will break it up so that more can read and reply. Many here can't read large blocks of type - it just turns to a swirl of grey blotches. -------
Kell writes:
Hi. I saw the family doc today. His partner was the one who saw my 'bite' last week and deemed it Lymes.
It was a bullseye rash, and four days after it appeared, I've had SEVERE all over joint pain and fatigue, headache, fluish. I feel like I've been hit by a truck.
Anyway, my doc today says that since my Lyme titre is negative, then I don't have Lymes.
So he didn't give me antibiotics because he said I don't need them.
He feels that since I was bitten 8 weeks ago, I would have gotten sick long before now. And the titre would definitely have been positive by now too.
Especially because Lymes would cause a bullseye rash all over and not just one rogue spot. (He doesn't know what the rash all over my face is, but it's not Lymes). So that's it on the Lymes front.
Thanks for all of your input & help! Best wishes for great health for each of you!
Kell (in PA) -
Posted by Keebler (Member # 12673) on :
- Kell,
I don't know what to make of what you wrote. First, your doctor is VERY, VERY WRONG.
Second, it sound like you agree. But that red faced icon tells me you may know better and be angry. Sarcasm is hard to identify in writing but I hope that's what the red face was all about.
Still, the words you write sound as if you really believe this and think it will just go away. Sorry, it will not. Not without taking you with it.
PLEASE see a Lyme Literate MD as soon as you can. -
Posted by Dekrator48 (Member # 18239) on :
Kell,
Please listen.
You need a Lyme literate MD and fast.
Your Dr knows nothing about Lyme disease and coinfections.
You need antibiotics right away and in high enough dosages for a long enough period of time.
You need evaluated for coinfections also like Babeisa, Bartonella, Ehrlichia, etc.
Do not delay or you may be very chronically ill for the rest of your life.
Post on the Seeking a Doctor board to find a LLMD asap!
I'm sorry you have been diagnosed by such a clueless doctor. I really feel sorry for you if you don't follow up on this and see a LLMD. The longer you put of getting a proper diagnosis the more difficult this disease is going to be to treat.
If you want to spare yourselves years of misery get away from that doctor asap and be seen by a LLMD who will treat you for Lyme disease. If you had the bulls eye rash, you have lyme disease--end of discussion. Your doctor's partner was right, sadly your doctor is wrong. I seriously pray you will not listen to him as he's given you very bad advice.
My wife had the bulls eye rash and she had rashes on various parts of her body afterwards, and in fact, she still gets rashes from time to time. If you go to "Seeking a Doctor" on the forum, several people will pm you with a LLMD referral. Do the right thing, see a LLMD and do it NOW. You'll be glad you did.
Gary
Posted by Keebler (Member # 12673) on :
- Some of these links may be duplicates as I was fixing up this post while other posted but now am too tired to sort out and delete any duplicates. -----------
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . .
- Full article at link above, containing MUCH more detailed information.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
=========================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
=====================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
- This explains just how serious lyme disease can be. It can be fatal if not treated. The longer it goes untreated, the harder it becomes to treat and chances for success diminish. ----------------
The National Lyme Disease Memorial Park Project is dedicated to all who have experienced the ramifications of Lyme and other tickborne associated diseases. -
Posted by Florence1 (Member # 22960) on :
i'm sorry but your Dr's an idiot......get a new one immediately...............
Posted by 17hens (Member # 23747) on :
If Kell believed her doctor, I don't know why she would have posted at all. Hope I'm right.
Posted by Lymetoo (Member # 743) on :
Please listen to these people. Your quality of life is at stake!!!
Posted by Kell (Member # 27508) on :
First, I'm truly sorry for the red angry face at the end of my above post. I still make smiley faces the old fashioned way and it makes the emoticon look angry. When I said I wish you all best health, it was meant with a smile!
A few days ago I did leave a message at a LLMD office. I will try to reach the intake secretary again Monday. Thank you for your comments, I don't want to live this way.
I'm bedridden at 38 with spine issues for the last 4 months with no hope of treatment or improvement. Lymes is the last thing I need. Gosh I just feel like crap.
I'll keep you posted and thanks again for your comments! Posted by Keebler (Member # 12673) on :
- No need to be sorry for the red face. I don't think anyone here thought you were directing anger at them but, maybe at the doctor. But, it seems you did believe him and red was just a pretty color to put in your signature.
Glad to hear that you will contact a LLMD. Do not share that name with your PCP as some like to make trouble for the LLMDs.
Regarding your PCP, I would not go back to him but transfer to the other doctor for basic care and see if you can get more antibiotics to hold you over.
You can also contact your local lyme support group for a PCP who is at least lyme friendly so you have someone you will understand your case, at least for basic care and routine blood work (not for lyme).
Get a photo of that rash on your face and if there is anything left of the bulls eye rash.
If you don't see your rash in the link below, still protecting your identity, is there a way you might post that rash here for some of us to help you identify if it may be something other than lyme on your face ?
Rash PHOTOS of lyme, bartonella and other TBD (tick-borne diseases). -
[ 08-14-2010, 07:29 PM: Message edited by: Keebler ]
Posted by Pinelady (Member # 18524) on :
They are right. It may take 3 mths. to develop antibodies to Lyme. At which time it has had time to disseminate throughout your whole body...
Treat any tick bite rash for as long as you can and as hard as you can to prevent this from becoming chronic.
Posted by sixgoofykids (Member # 11141) on :
Ugh, I went 30 years without a diagnosis because of ignorant doctors. Watch the trailer at www.underourskin.com and you will see some of why they are so ignorant.
A bullseye rash is diagnostic of Lyme. Please see that LLMD, he can help you.
I was bedridden, told it definitely was not Lyme, yet got better when I treated it. Unfortunately, it took so many years to get a proper diagnosis, it took years of treatment.
Lyme is the last thing any of us need ...... get treatment. I am well today and so glad I didn't listen to the doctors who didn't know better.
Posted by lymednva (Member # 9098) on :
There are many LLMD's in the PA area, so if you can't reach one, get the names of others from the Seeking A Doctor Forum on this board.
As others have said, the rash alone is diagnostic of Lyme (no "s"). The most important thing is for you to begin treatment with a LLMD.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Pinelady: They are right. It may take 3 mths. to develop antibodies to Lyme. At which time it has had time to disseminate throughout your whole body...
Treat any tick bite rash for as long as you can and as hard as you can to prevent this from becoming chronic.
resource you could have come upon... And the folks
here are tops... I too had a doc where I love- actually
several-- say that I could not possibly have Lyme.
I only challenged it when I was saying the wrong '
words to my students and THANK goodness I did...
I took Burrascanos guidelines into my ID (DUCK)
and asked for 400 mgs of Doxy to get me through
until I could see an LLMD. I am not recommending
that you do all that I did but I do recommend that
you keep pursuing this with all that you have...
your life is indeed at stake. Thinking of you...
and knowing you like so many others can beat this
with the right care... Best--
Posted by onbam (Member # 23758) on :
YOU (AND YOUR DOCTOR) HAVE BEEN DECEIVED.
the rash means that 100% you have Lyme.
Please post in seeking a doctor and find one known to us to be Lyme-literate, as there is a coverup in medicine about this and most doctors thus have no idea how to treat it.
Check out underourski.com lymecryme.com undertheightball.com
You need to do WHATEVER IT TAKES in order enable yourself to take 400mg doxycycline/day for 3 months past the point at which all symptoms resolve. The alternative is an possibly-lifelong, contagious brain infection. multiple drugs--a cell-wall inhibitor, an intracellular drug, and an anti-spore agent will probably be needed. If you've had a rash following a tickbite or any sort of positive test--that is definitive proof. Don't believe a negative, as the tests that we've been all)owed to have are only 30-50% sensitive (as described on lymecryme, good tests get withheld from us.) www.lymeinfo.net/medical/LDSeronegativity.pdf
in addition, i might treat with these herbs, or at least banderol. (another researcher martin sievers, concluded that samento made things worse).
YOU CAN LIKELY STILL BE CURED IF YOU ACT NOW. NOT TREATING THIS WILL BE THE WORST MISTAKE OF YOUR LIFE, WITHOUT A CLOSE SECOND.
Posted by littlebit27 (Member # 24477) on :
I just wanted to pop in as another voice saying please don't believe your Dr and please go and see an LLMD. I'm sure there is more than one LLMD near you. Call them all and see when you can get in the fastest.
Don't wait anymore, and don't waste anymore time. The longer it goes untreated the harder it is to treat.
Good Luck to you.
Posted by Wolfed Out (Member # 23727) on :
Kell,
I'm really sorry too. It must be frustrating to hear that news from your doctor, and post here to read everyone telling your doctor is wrong.
However, I have to agree with everyone else on this board. I think you have Lyme Disease from what you've written.
Many of us here are still on this board treating this terrible disease because we went undiagnosed for YEARS. I'm talking about anywhere from 2-40 years we're talking about. I'm a 6-10 year case.
I had plenty of "semi" normal years dealing with Lyme where I wasn't sure I had it, and could function at a completely capable level.. But those days ended abruptly last year.
Please, don't blow this off. You're in the very early stages of this. Treatment for you should last no where near as long as it is for most of us.
I'm going on 8 months now, and I know I have no less than 6 to go -- IF IM BLESSED. You don't want to be in my shoes.
PLEASE, get yourself diagnosed by a LLMD. YOU WILL NEVER REGRET IT.
Posted by sickpuppy (Member # 23846) on :
Update: You need to treat the lyme ASAP before it destroys you bit by bit, year by year.
Posted by 'Kete-tracker (Member # 17189) on :
Kell, The 1st doc saw the rash & Dx'ed you w/Lyme. You officially have Lyme. Period. That + rash evaluation is all you need, even according to the CDC folks, to be considered infected with Lyme, "reported" to them & entitled to your 2-3 weeks of doxy (again, acc. to the IDSA), which- by the way- is Not really enough treatment.
SO... you have no choice now but to seek out another M.D. (or N.D., if licensed to prescribe in your state) for sufficient antibiotics to take you a MINIMUM of 4 weeks BEYOND any signs or symptoms of Lyme (pref. 8).
I'm surprised that there are doctors left in PA that still believe all Lyme "victims" will have a Lyme titre (ELISA) above 1, even before any abx treatment. This is simply not true. Only *about* 1/2 will test + using today's current testing methods.
But, again, your medical records (should) show the partner's examination results & diagnosis, so I don't see how you can be denied treatment. Especially siynce mostbt of PA is considered endemic for the disease now. IF you haven't been on ANY antibiotic, RUN to the nearest LLMD (or LLND) A.S.A.P.
Time is Not on your side, Kell, at 8 weeks out! You do NOT want this to go chronic.
Posted by troutscout (Member # 3121) on :
There is one Universally and never disputed symptom of Lyme throughout the years...so irrefutable that it requires NO Lyme test result at all:
The Bullseye rash.
Your Doctor is an Idiot.
Posted by WIZARD (Member # 4597) on :
See no Lyme
Hear no Lyme
Can't be Lyme
Will it never end?
Posted by AlanaSuzanne (Member # 25882) on :
Agree with everyone! Please, please get yourself treated properly asap. You are fortunate in that you actually had a rash. Many/perhaps most of us aren't that lucky. You have a chance at preventing this from becoming chronic.
Like troutscout said, your doctor is an idiot.
And like sickpuppy said, this can destroy you bit by bit year after year.
Consider yourself fortunate that you came across this board early in the game and you have received good advice.
I wish I knew sooner about TBD. My family could have avoided years of suffering.
Posted by BackinStOlaf (Member # 23725) on :
reading the original post makes me so sad and angry (not at her, at the docs)
we are taught to trust our doctors and that they will help us.
We can't believe anything they say anymore Posted by Consuelachacha (Member # 26538) on :
Hi Kell;
I'm so sorry to see yet another person that DEFINITELY has Lyme. And YES you DO have Lyme.
Thank God you found Lymenet and the support and information you will receive here.
I do not know when I was bit nor remember having a rash. You clearly have the bite AND the bulls eye rash. It doesn't more clear than that.
Please pursue getting a LLMD and keep coming back for support.
Good luck to you and God Bless.
Still sick in STL.
Posted by LightAtTheEnd (Member # 24065) on :
Many people do not get a rash.
I pulled the tick off myself, and kept watching for a rash, but never got one.
I definitely have Lyme, but my excellent PCP also told me in 3 separate visits that I couldn't possibly have Lyme. And laughed. (She redeemed herself a little by sending for a Lyme test and giving me 3 months of antibiotics anyway, when I insisted.)
People who do get a rash usually get it around the original site of the bite, and just one.
After the infection has spread to the rest of the body, it is then possible to have a symptom flare in which several rashes appear all over the body, but that is highly unlikely following the initial bite, unless you already had Lyme and got bit by a Lyme tick again (which I have heard of), or unless you got bit by many Lyme ticks at once all over your body. (I haven't heard of that happening to anyone.)
Your doctor said, since 8 weeks had passed, you would have been sick long before now.
"It was a bullseye rash, and four days after it appeared, I've had SEVERE all over joint pain and fatigue, headache, fluish."
But you WERE sick before now.
I hope you took a photo of your rash. Doctors sometimes mistake it for a spider bite or ringworm, or perhaps it does not appear as a bullseye but just a spreading red patch or other appearance. However, no other condition actually causes a bullseye rash except Lyme disease. That is enough by itself to diagnose you.
Combine that with the fact that you had a tick bite followed by Lyme symptoms. That points pretty strongly to Lyme disease.
My doctor did suggest at first that I had somehow randomly come down with either two different cold viruses with identical symptoms (during the summer, when I never get sick and was not around any sick people), or several unrelated autoimmune conditions that all happened at the same time due to coincidence, or that I was approaching menopause and my body was doing weird things, and that nothing was related to the tick bite. But she was wrong.
Posted by Kell (Member # 27508) on :
Hello! I want each of you to know that I greatly appreciate your support & the time you took to respond!
I have found an LLMD and am waiting for an app't. It will be a 10 week wait due to the amount of LD patients he gets each day. I told their Lyme secretary that I am not on abx and am concerned about going that long without them.
She said there is a risk to going that long, but there's nothing their office can do until I am seen by the doctor.
There are complicating circumstances to me receiving abx. It's not as easy as just getting a script and popping the pills each day.
I'm allergic/sensitive to all oral abx. Therefore, I can only receive IV abx from here on out. No doctor will give me 3 months of IV abx without being absolutely certain I need them.
It's a troubling situation to be in even if I were a healthy person! Ugh.
The LLMD I'm seeing has come highly recommended by a few Lyme patients so I'm happy with this. Maybe after they get my intake paperwork they will decide to order abx until I can get in to see him.
There's much more to it, but my arms hurt too much to type any more. THANK YOU all for your support and I continue to read all I can on this site and in your messages. I'll keep you all posted!
You are a special group of people and I appreciate each of you!
Posted by LightAtTheEnd (Member # 24065) on :
Many Lyme doctors are under attack from insurance companies and the IDSA. Some have had their licenses challenged for "treating" a patient they had never seen--i.e., prescribing antibiotics over the phone to someone who lived far away, could not get an appointment with them for a considerable time, and could not get antibiotics from a local doctor.
This is part of the "Lyme wars" in which Infectious Disease ducks are trying to put Lyme doctors out of business for treating chronic Lyme and using long term antibiotics. The IDSA claims that chronic Lyme dose not exist, and therefore does not need to be treated. Their guidelines are widely publicized and adopted by mainstream medicine as well as insurance companies. Most doctors, who have little experience with Lyme, will look up those erroneous guidelines and tell you the same thing.
The position of most Lyme doctors is precarious, and it is crucial to all of us that they be allowed to continue practicing, since there are not even enough of them now to meet the demand from so many patients.
Therefore I think most or all of them are very cautious now about prescribing anything before you arrive at your first appointment. After they examine you in person, then they can do phone consultations if they choose, or at least call in prescriptions for you based on a phone call, if necessary.
I hope the LLMD can be a big help to you, and that your treatment goes well.
If you are allergic to oral antibiotics, can you take any herbs, such as the ones recommended in Stephen Buhner's book?
Posted by Kell (Member # 27508) on :
Hi All!
I wanted to share an update as you all were so passionate in helping me! (Thank you again by the way!)
After a 10 week wait to see a Lyme specialist, I began 6 months of ABX therapy with Ceftin (1000mg/day). After a couple of weeks with no improvement, my vitamin D level came back at 8! (Normal should be about 30). He placed me on Vitamin D and within 2 weeks, I had DRASTIC improvement in my symptoms!
I am very happy to say that I have been off ABX therapy for more than a month and am still symptom free! (Vitamin D will be a lifelong supplement however). I don't know what the future will bring or if Lyme will stay away for good....but I'm free of Lyme symtoms!
Thanks for your care & support! You all are invaluable and my prayer is for each of you to get well and be well!
Warmly, Kelley
Posted by momlyme (Member # 27775) on :
That's awesome! Glad to hear it.
What were your symptoms?
I know Vitamin D helps with calcium absorption... so were you dealing with bone pain?
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