Lyme Disease Community
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Avatar universal

Possible Chronic Lyme After 1 yr

About a year ago ( around late april/early may) went hiking at a place called Jungle Habitat w/ my boyfriend. No stranger to wooded areas like this (wore layers, still chilly outside)

A couple days after we had gone up there, I noticed my knee had a huge bump on it and it was red around the bump. I tried to ice it and not itch it ( because it itched like crazy) and I assumed it had just been a spider bite. A couple days went by and the bump looked like it was getting worse and my mom thought it was maybe an ingrown hair but couldnt find anything.  About a week after my trip to Jungle Habitat I had flu like symptoms and the bump on my leg had not gone away. I made an appointment to see my family doc. I told her about my visit to JH and she told me "Well it could be from a tick bite, but lets just treat it as a regular insect bite and see what happens from here "

She prescribed me two thing (as of 05/06/2014) for my bite and my flu like symptoms:
1. Sulfamethoxazole -TMP DS tablet
2. Bethamethasone DP AUG 0.05% CRM

She gave me a weeks worth of the antibiotics and a tube of cream
My mom did however asked the doc about maybe being tested for Lymes because she knew that there were diseases/illnesses caused by tick bites but the doc said she didn't think it was that serious and that if I were to get tested that the tests were not accurate. The symptoms had gone away and my leg had gotten better but about a week after I signed up for my schools blood drive. When I was giving my information, they had asked if I was on any medicine and I told them yes, but my doctor told me it wasn't for anything serious. They looked at my leg and told me they could not take blood and to go get tested . I had told my mom this, but my doctor still didn't think it was potentially a tick bite. We just went on with our lives because the bite went away and there was a lot going on in the family as it was so I didn't think too much about it. What I hadn't realized though is that I DID start getting pains in my body that I hadn't had before. I had pains in my body that I couldn't describe, and I kept bringing them up to my family and boyfriend. My skin feels like someones rubbing me with sand paper or when its bad it feels like when you have a bracelet on that pinches your hairs ( I'm horrible at describing )

But I also get shooting pains all over my body, headaches, trouble remembering, sleeping problems and the one that I've always tried to explain is the tingling feelings. I often said it felt like parts of my body would fall asleep but not fully, it would just be the tingly feeling and it happens in very random parts of my body

The problem was that I hadn't complained about it (even though it happens randomly throughout the day) because I HONESTLY thought everyone had these problems and I was just being dramatic

**FLASH FORWARD to two weeks ago**

I had an allergic reaction after I came in from walking my dogs. My eyes swell, my mom gives me antibiotic drops for Pink Eye (drops were never opened and new ) ..eye got better

Week after, my eye starts swelling up again, but the whites of my eyes were swelling around the colored part of my eye. My mom takes me to hospital, I'm given eye drops and I go home

Week after that, I had started coming down with a cold and my mom believes it's from the Pink eye (bacterial infection) so we go to the doctors, she gives me Levaquin for my cold

The morning after I take the levaquin, my boyfriend wakes me up to tell me he's going to work. I felt confused and I tried to tell him "Don't go yet" but I couldn't get the words out. I rolled over onto my stomach and lied there and I couldn't move (felt very lazy and weak) My boyfriend then shakes me and tries to tell me to talk and I'm consciously sitting there thinking "why can't I talk"  and I tried and tried but I just couldn't connect my words to my mouth. My boyfriend went and got me some apple juice and I was able to sit up at that point, and I went to take the apple juice from him, and grabbed the tissues on the bed instead. I didn't want the tissues and I was honestly grabbing for the drink but my hand went to the tissues instead. I was there consciously, but I was just mute. I could write it all down on my phone, but my spelling was off as well. I then typed "I think I should go to the ER." So we went to the ER, they brought me back, ran a chest X ray, took blood and told me it must of been an allergic reaction to the antibiotic. They gave me a prescription for a zpac, and told me I would get a call back if my blood tests were positive for Lymes.

A couple hours after that I could finally talk again, but I still felt really weak. My gmom came over and told me that everything I had mentioned was like what she went through when she had a seizure. So we all thought that it could have been a silent or partial seizure because I was conscious, I was confused and I couldn't talk.

I had to follow up with my doc after the hospital visit, BUT my doc isn't in on weekends so I had to wait for Tuesday (10/13/15) and that weekend I was still having little episodes and couldn't talk.

On Tuesday, I went to see the doctor and she told me she thinks it was just an allergic reaction. My mom was p*ssed and told her that she wants blood work done for my other issues (the pains in my body, lymes test, etc)
and so the doc took more blood.

Two days after ( 10/14/15) My doc's assistant nurse tells me I tested negative for both Lyme & Arthritis and that maybe my blood pressure was just high from my weight ( I should not have HBP for my height and weight) and that it could be Lyme's but they think it's just allergy related ( they never tested for Lymes, only took test results from hospital)

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. But as far as my doctor goes I am not getting any help or direction for what I (and my family) believe is Lyme Disease.  I am asking if anyone could give me tips, help, comments, anything that can help me with this please! The past two weeks have been exhausting, and I honestly feel likee my symptoms have gotten worse since getting the cold two weeks ago.

Thank you !!
5 Responses
Avatar universal
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.)
1763947 tn?1334055319
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.
Avatar universal
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!!
Avatar universal
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!!!
Avatar universal
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!  
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