posted
Hi, So I'm at a bit of a loss here. 3 1/2 weeks ago I discovered a tick embedded in my scalp. (Unfortunately, I just yanked it out because I thought it was just a scab at first.) It was pretty engorged and pretty well attached. Within the next few days, the lymph nodes on my neck and head on the side where the tick was attached became very hard and swollen - and still are 3 weeks later. I've been kind of lethargic and I've had much less peaceful sleep than normal, but otherwise feel okay. Because of the location, I haven't been able to tell if there's a rash. My doctor really downplayed the whole thing, but he did a lyme titer and sent the tick in for testing. My bloodwork was negative, but the tick was positive. My doctor still thinks that I shouldn't be concerned and said that if I'm still worried he'll redo my bloodwork in a few months. My research and common sense tell me that this is not good advice, but I don't want to overreact either. What do people here think? How should I proceed? I'm concerned that if I did get infected, it'll be too late by the time my doctor becomes a believer. Thank you so much for having this support net. I learned from past experience that you sometimes get better advice from knowledgeable patients than from a GP. Sorry for the long post. -Amy
Posts: 8 | From New York, NY | Registered: Nov 2004
| IP: Logged |
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Your hunch is Right...............get to a knowledgeable doctor NOW!!!!!!!!!
You need to post in seeking a Dr. When yu call for an appointment tell them you are newly icted and need an appontment right away. THIS IS URGENT. TIME IS OF THE ESSENCE.
You need to be on doxy right away. If that tick was positive you are ositive. I had the same as you. Bite on the head and swollen lymph nodes. I have lyme!
I don't want to alarm you but I do want to motivate you. You cannot wait to get antibiotics any longer!!!
Son someone from your area willhelp you find a doc.
In the mean time if the doc you have is a good guy tell him you need double dose (I take 200 mg, 2 x a day) of doxy for 60 days.
Some one will come along here and be able to help further.
Get to a doc that is an LLMD....your quality of life depends on it!!
There are others here who are much wiser than I but I think they will all agree that you should get to an LLMD and get treatment right away. This way you have the best chance of not staying sick.
Shanna
------------------ Wishing you fast healing and good health!
Posts: 109 | From Colorado | Registered: Aug 2004
| IP: Logged |
Your research & common sense are what you need to follow.
Look at the facts - 1) embedded tick 2) typical symptoms developed 3) tick tested positive for Lyme 4) Lyme is a clinical diagnosis. NO lab test should be used to "rule-out" Lyme disease.
Actually, your Lyme titer was done too early. It takes about 4 weeks for the body to produce enough antibodies to test positive.
#6 in "Basic Info" www.ilads.org says: "The ELISA test is unreliable, and misses 35% of culture proven Lyme...and is unacceptable as the first step of a two step screening protocol."
If I were in your place, I'd want to be treated ASAP. The earlier the treatment, the better the results, but ONLY if treatment is long enough & strong enough.
Print "Basic Info" at www.ilads.org A couple pages of facts everyone should read. #10: begins "there has never...been one study that proves even in the simplest way that 30 days of antibiotic treatment cures LD..."
page 16: Antibiotic Choices Note the dose that is recommended - more than the typical treatments.
page 18: Treatment Categories Early Disseminated Disease: mild symptoms for less than 1 yr. Adults: oral therapy until no active disease for 4 weeks. Some now say no symptoms for 6 to 8 weeks to be sure.
Last page: Rationale for Treating Tick Bites Read carefully, especially the last two paragraphs.
I'm not a dr, but I think you need to be put on antibiotics, as recommended by Dr B, as soon as possible!!
It would be best if you could be seen by a Lyme Literate Med Dr (LLMD) so you'd be evaluated for Lyme and other Tick-Borne Diseases (TBDs) like Babesia, Ehrlichia, & Bartonella.
Ex: Bartonella also causes swollen lymph nodes & lethargy.
posted
Thanks so much for the responses. It is a little scary, but this is what I need to hear. I was getting the impression that I was being an hysteric even for bringing the tick in for testing.
My mom's an intensive care nurse and she talked a friendly infectious-disease doctor into writing me a script for doxy to start out with. I should get it by tomorrow or Monday, so that buys me some time to find a better doctor.
I just can't believe this. I already have another quasi-serious, chronic and quality-of-life-altering condition that took years to diagnose and that my doctors didn't take seriously at first...this is deja-vu all over again, except that I'm hoping to nip this in the bud.
At least I'm well-versed in the art of being my own medical advocate.
Thanks again, and please keep the advice/information coming.
Amy
Posts: 8 | From New York, NY | Registered: Nov 2004
| IP: Logged |
posted
Hi Jolie, I wish I had been as ahead of the game as you. Two years ago I had a 6" red rash that I ignored because in Canada no one evens knows about lyme. My symptoms started quickly and I saw over 20 doctors in 2 years. Not one of them could figure it out. I ended up testing myself at Igenex and flew across the country to see a doctor. I have now been on ketek and flagyl for 6 weeks. Good luck!!
Posts: 7 | From toronto, ontario canada | Registered: Oct 2004
| IP: Logged |
I cannot urge you enough to see an LLMD immediately! Like TODAY!!!
If that is not possible, find any doctor who will at least prescribe doxy in the amounts mentioned in the above posts.
That way, at least in the interim, you will be addressing the Lyme and possible co-infection of erlichiosis.
I agree with the info given by all the posters above!!!
My husband, who never discovered a tick or rash, luckily had a local PCP who gave him a scrip for doxy because he had an unremitting spring headache and swollen lymph nodes. And this was BEFORE any test results came in.
Why? Because we live in a Lyme endemic area and this doc has seen what lyme can do if left untreated so he never messes around. Of course, the insurance companies hate him and vice versa.
Just adding my 2 cents.
GO, GO, GO!!!
Keep us posted and the best of luck to you!
love, andie, JC and Julie
Posts: 278 | From weston,ct.usa | Registered: Aug 2004
| IP: Logged |
posted
Jolie, I'm glad you found this board, and members jumped right into help you right away!
If you don't know of a lyme literate MD, LLMD, post for one in NYC. Many will send you a PRIVATE message giving their drs. name and phone no.
Best wishes on CURING your early lyme dx! Those of us who are late-stage, chronic lyme wish we would have had the opportunity you have now to cure yourself. We hope to be put into remission! Betty G., Iowa
Posts: 1 | From US | Registered: Aug 2015
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
HI,
You are right...Lyme tests are not reliable.also many lyme patients dont never got a rash... so just because you dont have one doesnt mean you dont have lyme.
western blots done at certain labs are more accurate than most but even they shouldnt rule out lyme if symptoms and tick bite are present. (lyme can be diagnosed clinically)
If the tick had it and the tick bit you... guess what Unless it didnt get time to feed you have it.
like the others said you need to find a lyme literate dr. because of both ignorance to the disease and political issues many drs. arent willing to treat lyme at all and most of the rest give inadequate treatment.
Time is of the essence.... the longer you have it the harder it is to get rid of. and lyme symptoms can be devasting if they are not treated correctly. also there are coinfections which a llmd will also know how to treat. (if the dose is too low or for to short of time you could end up with bad symptoms later on)
I'm not trying to scare you I just want you to know that it can have a very negative impact on your life if you dont get it treated properly.
If no one has given you a dr yet post in seeking a dr. and tell them where you are and how far you are willing to travel. If no one replies repost in medical (some of us are to sick to visit all the forums) Include your email in the post.
Just so you know we do not post drs. names on this board because of the political issues.... some people want to take llmds license away for treating long term cases. So the drs info will be emailed.
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,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic