Welcome to MedHelp Lyme --
I am sorry for all you have been through, and are still going through!
Your history as you relate it is very well done, and I suggest you copy-and-print out your post above to take with you to an appointment ***with a Lyme specialist.***
In the medical community, there is much confusion about Lyme, and all the comments and reactions and treatment you got from the various medical personnel are often given, without any serious thought of Lyme. That is the split in the medical community throughout the U.S., so you are very much NOT alone in this.
The kind of specialist who would normally deal with this kind of bite might be an infectious disease doctor or just a general practitioner (GP), but there is a huge split in the medical community about whether Lyme is nothing much to worry about ("a course of doxycyline antibiotics will fix you up just fine!") or whether Lyme is a bigger problem that needs bigger thoughts and action (such as different testing and then different medication, due to peculiarities of the Lyme bacteria).
I got Lyme on a trip to the East Coast several years ago, and I remember that it felt for me like a cross between the flu and a hangover ... 24/7, for weeks and weeks. I went through many MDs, and the 20th (!) doc finally tested me for Lyme -- it came back positive! ... but the doc said I 'could not possibly have Lyme' because I didn't 'look sick enough.' Riiiiiight.
I had an old friend who had had Lyme some years before, so I knew a bit about it, and took the positive test results to a Lyme specialist, who tested me again and diagnosed both Lyme disease and another infection often carried by the same 'Lyme' ticks. (It is not uncommon for someone with Lyme to have one or more addition infections from the tick, and all of those 'bonus' infections are often referred to as a group, as "co-infections" of Lyme, in case you hear that term.)
Since Lyme is an infectious disease (you get it as an ... infection!), it seems that infectious disease (ID) doctors would be the most logical docs to go see if you have Lyme ... but oddly enough, the ID docs often are more close-minded than some other kinds of docs ... I guess the ID docs feel they have superior information and training when it comes to bites and infections, so they just stick with what they know.
An ID doc, to my understanding, usually gives a patient suspected or confirmed as having Lyme disease an antibiotic called doxycycline. That works in the very early stages after the bite, but when it has been a while, as your history seems to indicate, then the Lyme bacteria have found ways to hide in your body where the immune system cannot find the bacteria and to kill them. Result: ineffective treatment.
In addition, some ID docs are not as careful to look at the patient's whole array of symptoms in order to test for and diagnose any of several other, separate infections the 'Lyme' ticks often bring along. Lyme is an emerging disease that the medical profession is still trying to figure out, so having a Lyme specialist is key (imo) to getting a full and accurate diagnosis and to know how to test for, diagnose, and structure a treatment program.
You say, "My mom has been doing research and told me it probably came up negative due to the fact that I still have antibiotics in my system." That is quite possible, from what I have read: the antibiotics suppress the activity of the immune system, and because the usual Lyme tests (ELISA and Western blot) rely on measuring how active your immune system is, the test results can be negative ('no Lyme here') **even if you have a serious case of Lyme.**
An MD who has a more progressive view of Lyme disease and its co-infections would take that possible suppression into account, and may test with an entirely different kind of test from the ELISA/W.blot: instead of measuring your (likely suppressed) immune system activity, a special test created and offered by IGeneX Labs looks in your blood for the presence of Lyme DNA (genetic material). The IGeneX test is *not* suppressed by Lyme like the older ELISA/Western blot tests, and so is more accurate. (My Lyme doc used all three tests, just to collect the most data possible. He was surprised when not only my IGeneX test was positive for Lyme, but also the ELISA/Western blot tests -- it was double or triple confirmation of my illness.)
These are the reasons to find an MD who practices in a more advanced way to detect Lyme, and then to also check for possible co-infections, based on your variety of symptoms.
That your doctor doesn't understand or use these tools is not surprising: there is a split in the medical community about how serious and widespread Lyme is or is not, and also how to test for it and to treat it.
The main voluntary organization for MDs specializing in Lyme disease is called 'ILADS' [pron. EYE-lads], short for International Lyme and Associated Diseases Society. Their website has much information and also a referral link to help you find an ILADS-member MD near you. Dr Burrascano's treatment guidelines on that website are well written, imo, tho I do not know if they are still being updated.
Compared to other ailments we experience, Lyme is still a confused area of medicine, and not all the docs are on the same page. I do know that a family member and I were both finally tested, diagnosed and treated properly (for Lyme and babesiosis) more than 5 years ago, and we are both quite healthy now (knock wood!) -- and I wish the same for you.
PS -- I just searched online for -- new jersey lyme disease -- and got some very promising links. (Cautionary word: because Lyme disease is a still-emerging area of medicine, some of the docs and their ideas are little strange, so if you find yourself with such a doc, take copies of all your test results to date and quietly get a second opinion from another Lyme doc. And ALWAYS get and keep at home full copies of all tests done. A future doc may be very much helped by the data.)
Another reason to have an ILADS member as your LLMD is that lyme almost always comes along with at least one co-infection and each one requires different meds.
Thank you for this information!! It really helps a lot. I've been searching around everywhere for any kind of advice but its hard because everyone lives in different states and everyone deals with different symptoms or the same but they will have it less/more serious so its hard to get "accurate" information (even though I know everything with lyme disease is misleading as far as knowledge of how to treat it goes ) so i'm trying to figure out what to do! I went to the hospital lastnight because my blood pressure has been really high and I fell in the shower. I knew I was going down but I kind of just let it happened so it was more of a slide down the wall from being dizzy. I just think the symptoms are progessively getting worse and I would rather get treated/ see a specialist so it doesn't get worse! Thankfully the hospital gave me a referal to a neurologist who also has treated lymes (im hoping it goes well with the doc--Im not sure if he's apart of ILADS but I will look into it!) Thank you again for the help!!
Oh no, really? I'm seriously so thrown off by all of this because my doctor really blew it off and I honestly thought the pains and symptoms I was going through was what everyone had throughout the day but Ill randomly ask my friends and they'll say no not at all.. So now I really believe there's something wrong and I need all the info/tips/advice I can get on how to deal with this! Thanks for the advice!!!
There is indeed much confusion among MDs who treat patients with Lyme -- some docs take it seriously, others think it's not such a big deal. If you look around online and at patient-focused Lyme groups near you, you will find people who do take Lyme seriously and know how to test and treat it. If you search online for --- ILADS New Jersey ---
you will find quite a few links to patient-oriented Lyme groups that can help you find a good doc nearby. Let us know how you do!