Hi,Do you know what the symptoms of lyme disease are? I got bit by a black legged tick last June and I've been sick since september/october with fatigue,chills,nausea,body aches(flu like symptoms),and sweats. My right ribs are sore(side of bite). I can't hardly move and I've been getting headaches. I was tested back in june(about 12 days after the bite)and the first test was borderline and the second test was negative. It's about 7 months later and I still have a red looking bump. I don't like this feeling. The doctors don't know whats wrong with me,but I know there's something wrong. I just got another blood test done 2 days ago for lyme and waiting for the results. Any advice would be greatly appreciated,thank you! I posted on this website before regarding endometriosis because of the horrible pelvic pain and irregular periods.
Hello again. What you describe above is very suspicious for lyme. There is a symptoms list in the health pages here under Dr. Burrascano's treatment guidelines. You may also want to look in the health pages under physicians and read Dr. Crist's information on symptoms and testing. Lyme testing is not very accurate anyway but antibodies do not show up for several weeks after the bite if they show up at all. I think your test was done too early to show anything. Many people, including myself had to see physicians who specialize in lyme disease to be evaluated and treated.
Hi,thank you so much for the response. I will take a look. This waiting is a killer. I just don't like being ill and not knowing whats wrong. Last June I went on a trail at the lake in town here and had run into stinging neddles. That was no fun,lol. At about 12:30 to 1:00am the next morning I felt uncomfertable on my right side,so I laid on my left side. I felt to see what was wrong with my right side,and I felt something attached to my skin,so I tried pulling it(it didn't hurt)and in 3 hard yanks I finally got it off. I went into the bathroom to see what it was and it was a black tick(had 8 legs). It had freaked me out,so I woke my husband up so he could take a look at it,and he confirmed it was a tick. It had bit a hole in me and it was red around the bite. I don't remember a rash. 3-4 days later I went to the doctor and he said there was some black in the hole,so he wanted me to have the test done. I still get the chills just thinking about it(I don't like bugs),lol. 1-2 weeks later I had piched the bite and the rest of the tick came out and some puss. I saw some black come out,so I figured it was the tick. I got bit on June 5th and had the test done June 16th. The chills and sweats have been awful. And recently my ribs have been killing me(can't hardly get out of bed). Thank you again for responding. I will let you all know what the results are!!
I also have been having headaches and my eyes have been hurting. My right eye was red once(not sure from what)and I kept taking eye drops for it(it's gone now). Do you know how long after the bite you get symptoms? It was 2 1/2 months after I got bit when I've been sick,and am still sick. They prescribed me with antibiotics once they told me that my first results were borderline(took it for 2-3 days)and then they told me I didn't need to take it after the 2nd results were negative(so I stopped).
Hi,thank you for the rsponse. I live in Oregon,about 50 miles from Portland. When I saw my doctor the first time,he wasn't concerned because he said we have a low chance on getting the disease. I don't know if we have any LLMD's around here. It was so bad last night,I was so warm and kept sweating and could hardly get any sleep,and before that I got sick. It seems like it's getting worse as time goes by. I got about 3 hours of sleep altogether. My husbands getting concerned and is hoping(me to)to get some answers real soon. Thank you again!!
Lyme is present everywhere. Unfortunately is often gets overlooked in states where it is not endemic. I was told there was no such thing as lyme in Ohio. Funny, it's endemic in western PA which is about 1.5 hours from me. I don't think the bugs stop at the border............
Hey,sorry for asking all these questions,it's new to me. This is weird,I'm only hurting on my right side(from head to leg), I have sore ribs where the bite is. I was hurting there(same side)before I knew it was a tick. I can't move to my right or it will hurt. I will look into the Babesia. Here's a list of my symptoms:
My doctor thinks mine may be caused by high cortisol at night. We did some tests (saliva) and he recommended a supplement call Phoshatidylserine (PS-100).
It will lower cortisol levels only if they are high and it has good effects on your brain. It is the main essential fatty acid in the brain and it is the compound that declines with age. So even if it doesn't help the insomnia, it is good for me!
He also thought the minocycline may be stimulating and I am now on a double dose every other day. I Ialso take it earlier in the day.
Those symptoms above sure look suspicious. My symptoms are also worse on my right side. I was bit on my right calf. Who know, because it is a systemic infection, but still...
By "woozy", do you mean dizzy? That is my main symptom. Insomnia does trump it, but it is very difficult to carry out my day due to it.
Keep pushing, don't give up. I was undiagnosed for 14 years just because of negeative tests. Each doctor I saw (and there were many) suspected Lyme, did the test and then ruled it out based on the tests.
I have recently learned there is an HLA gene that if you test positive for it, you may not make antibodies to Bb!! I am going to ask my doctor next month.
I need to do more research on the HLA. I joined PubMed, and when I make sense of it, I will post info about it.
This is the definition:
HLA-DR is also involved in several autoimmune conditions, disease susceptibility and disease resistance.
Ooops,sorry lol,I meant dizzy. I'm gonna keep pushing my doctor. My family thinks I should see another doctor for my symptoms. I've been feeling sick today and trying to do household chores is a little difficult. I have 3 kids and I sometimes need my hubby to take care of them when he gets home because of the exhaustion. My kids are 2,5,and 9. My oldest likes to help(which really helps me). When were the both of you diagnosed with lyme? I should be getting the results by wednesday(hopefully). Well,you have a wonderful day and I will keep you all posted as soon as I get the results.
I have 2 kids- a bit older 10 and 12. Yours are still little- hard. Housework is tough for me as well. it is hard to stand for any length of time. Kind of Dysautonomia symptoms w/o low blood pressure. I am tachycardic when standing.
I was finally diagnosed in November. Started treatment in December.
Good luck with the results and a good day back at you!
Hey,could bladder issues be another symptom? Since November,I get this pressure feeling on my bladder but my urine test was normal. It feels like when I was pregnant(baby pressing on it)and it's been getting annoying with me. I thought it was because of the cyst that I had,but it had ruptured and I still have it(the pressure). I've had pain in my right shoulder since October and didn't know what it was from. Thank you all again!!!
Hi,I'm getting nervous..the first results are in,but the nurse would not tell me. She said the doctor has to review it and he will call me. When I was tested before,the nurse told me the results first,but this time he has to look at it. I asked her if there was any positive,but she said"I don't know". She said it's out of her league(medical wise). I will keep everyone posted!!
Thank you,I was wondering what it meant. The nurse did say they're doing the Western Blot this time. Do you know how long it takes to get the results? I told her I'm still having problems and she said if it gets worse for me to come in. Thank you again!!
Well,my doctor said I don't have lyme disease..it's back to the drawing board again. I'm so frustrated because I don't know whats going on. My doctor said I have a false positive,what does that really mean? Here's my results:
Borrelia Burgdorferi Antibody with Reflex to Western Blot. Here's my results:
Well mine is 1.03 H. Thats what it says on my report. And the only reactive strand that I got with the Western Blot is: 23 kd IgM. Does anyone know what my results mean? You all have a great day!!
Is your doctor lyme literate? I might suggest you read about testing in the health pages. Dr. Crist has a very good explanation of the testing and symptoms. Your test sounds positive to me. Let me know what you think after you read it.
Honestly, you sound very typical for a lyme (and babesia like kitty said) disease patient. If you had both your bands show up at the same time (41 and 23) on the IgM western blot, you would be considered CDC positive.
Please seek out a LLMD and make an appointment. Do not waste any more time with doctors that are telling you that it is a false positive. I had a test run through IgeneX and it had 10 positive bands, CDC positive IgM and the doctors were still telling me that I didn't have lyme.
I am tired of reading stories about people obviously sick with a tick borne illness that are being stonewalled like this. A good friend of mine can hardly walk now and she went through this "lab error" and "false positive" explanations herself last year. They recently found a few bands in her spinal fluid and told her that it was "nothing to worry about"!!
Please don't wait around and allow yourself to get worse. Lyme is everywhere and most doctors are completely ignorant of it. Seek out the best LLMD closest to you and make an appointment and get evaluated!! Dr. Crist says that 97% of people who have one specific band for lyme (and you do) will see improvement with antibiotics .
I just wanted to say thank you everyone!! You all have been soo helpful to me. I'm looking up LLMD's in Oregon,hopefully there is one that I could go see. My test just showed the 23 kd IgM on this one..last time(June)it was only the 41 kd IgM. But the first test that showed the 1.03 and the second one that showed the positive 23 IgM makes me think that I do have it. Oh yeah,they used Quest for the testing. Are they good about the testing(accurate)? And I was also thinking,if I didn't have it,wouldn't of my tests showed nothing(negative)all together? I just wanted to say thank you again!!!
I have heard of a few people getting decent results from Quest. The general labs do not specialize in testing for lyme. I personally think the Igenex results are much better. I tested completely negative by LabCorp. Not one single band. I had 30+, 39 and 41 IND by Igenex on IGM. Llmd's consider IND to be a weak positive. It would be interesting to see your results if done by Igenex. Irregardless, the testing is not that accurate anyway. I don't know if lyme is your problem or not but I think it takes a doctor who really knows this disease to tell you whether you have it or you don't.
I also wanted to comment on something you posted on the 18th. It was about pain on one side. I have significant pain on my left side from my neck, down my back to my hip and cheek area and down to my foot. I get numbness that runs along the same line. It's literally like someone has drawn a line down that side of my body. This all went away on antibiotics. I have been off of them and it started creeping back slowly. Now it's all back just like before. I have started treatment again. This isn't all I have but just commenting on the one-sided thing. I think Dr. Crist mentions this as well.
It really should have been gone long ago unless there is a piece inside. I had a chigger bite from the summer and it looked like what you describe. It was a lump forever and there is still a mark. My bullseye rashes were gone in about month or so.
About the bump at the bite site: I was reading a book on Lyme recently and it talked in detail about the mechanical and chemical action that ticks take when they bite -- that there is actually a kind of 'cement' that the tick spit makes to seal itself to the place it is attached to your skin.
It's possible then that there are bits left behind when the tick falls off, and even that the tick's head (teeny tho it is) is still imbeded in your skin. Ask your doctor about it, maybe he or she can remove it.
I do wonder if there's still some left in there. I remember about 2 weeks after I got bit,that I had what looked like a pimple. It had black in it,so it came out. Maybe I still have some left in there. I remember yanking it out,and it wouldn't move afterwards. I don't remember seeing a head on it. I had talked to the advice nurse and hes concerned because I still have a bump. He said it should of been gone by now(7 months). He asked me if I had flu-like symptoms and I told him I do. Hes leaving a note for my doctor to call me tomorrow. But,he did say that I need to get it looked at and if I get worse,he wants to me to call them. And he wants me to take pictures of it. I took a picture last night and today,so we can compare them. It's still red looking. He told me to take benedryl for the itch and put an ice cube on it,so I don't scratch it. Thank you for the info!!
Hey everyone,my doctor saw my bump today and he said I have an infection,so he prescribed me with clindamycin(4 times a day for 10 days). He did notice that some of the tick is still inside me(ewwww). I had to see it myself,so I got my make-up mirror and saw some black in there. I just wanted to update everyone,talk to you all later,byee!!:)
He didn't take it out,he said it should come out anytime. I can't believe it's been in me for 7 months and I didn't know,yuck. I tried squeezing it,but it won't come out. My husband took a look at it and he could see it to. It looks like a pimple with black in it,and it really itches.
Hey everyone I wanted to say a couple of things. 1-I finally got it out and the bump is healing..but I'm still having symptoms and I'm done taking the antibiotics. 2-We're getting rid of the internet and the landline phone. I'm soo sad we're. I will try to get on here when I can to see how everyone's doing and to let everyone know how I am. Tomorrow is when my husbands calling them. I will try to be on here tomorrow. Goodluck everyone!!
Tracie - I just finished reading this message thread. How are you doing? It just burns me up to read what you have been going through but this is what is happening all over. Regular docs do not understand Lyme, they don't know how to diagnose and treat it - it is just pathetic. We need to find you an LLMD. You had a tick bite and you are still sick - that is PLENTY for a diagnosis. It is a clinical diagnosis but unfortunately, docs are told to use the tests and they are simply inaccurate.
I had a tick bite in 1999 - never saw the tick - but had a big bullseye rash. Doc told me that I couldn't get Lyme in Michigan. And, I wasn't sick at the time, so I received no treatment. I did some research but never found information to the contrary. Christmas, 2002 (3.5 years later), I got pneumonia and got sicker as I recovered. I thought back to that tick bite, and asked for a Lyme test, but it was negative. I was initially diagnosed with CFS/fibromyalgia, but it just didn't fit because I was so much sicker (and in so much pain). The symptoms were endless. I had all the basics of insomnia, fatigue, pain, then developed Raynaud's, vision problems, and in the next 4 years, lost my gallbladder, developed excessive arthritis, had a seizure, developed small and large fiber neuropathy, autonomic neuropathy, lost 110lbs for no reason, lost most of my hair, developed permanent chills...and then it hit my brain very seriously, and that is scary. After 4.5 years of symptoms and 3 negative Lyme tests, I found the right information, diagnosed myself and found an LLMD.
That was two years ago and I am still getting worse, but it's hard to determine what is going to work for a specific patient when there are no established guidelines. I would have never believed that I would get a disease that would just about destroy my life, that doctors don't know how to treat, that the CDC says doesn't exist (advanced, or "chronic" Lyme doesn't officially exist, but here I am!). You can't even mention the name of an LLMD online. It's surreal.
I didn't mean to go on about myself. I just wanted to let you know that this is a disease that so little is still known about, and that you can have it without testing positive. I'd say you have it. You were bitten by a tick, followed by classic symptoms. You need to be on antibiotics for a long time.
If you haven't found an LLMD yet, there are two good ways:
1. Go to the Lyme Disease Association Doctor Referral page:
http://www.lymediseaseassociation.org/referral/ You can find the LLMDs closest to you. You can only use this three times in one month, or I would have looked them up for you.
2. Go to ***************. Join. Go to the Flash Discussion, then to Seeking a Doctor. Leave a message that you are looking for an LLMD in your area. When you get there, you will see the guidelines for posting this message. You should join Lymenet anyway...it's full of everything you'd ever want to know about Lyme, and then some.
Again, my heart goes out to you, sweetie. Hang in there!
Wow,I'm soo sorry what you've been through. I can't imagine how you've felt. I wish there were more doctor's out there that can help us. It's been hard trying to find an LLMD here in Oregon. I will look up the websites tonight.
I've been in so much pain the past 3 months(rib pain)and feeling sick alot. It's hard to do everyday chores and taking care of 3 kids. It's weird that all of a sudden I felt sick..going from completely fine one day and "bam"the next day I can't do anything. I was fine before the bite,but it seems like my bodys going down hill now. I've developed more symptoms since I was on here last. My memory has been soo bad lately..I sometimes can't remember what I did or what happened the day before.
My husband thinks I have it also,and hes been very supportive of me. Hes such a sweetheart. I would like to find an LLMD close by. It would be worth every penny for out of pocket. I just want to get treated. I know I would have to be on them for a long time. Could it also takes 3-4 months to get symptoms after a bite? I don't remember the rash though.
Oh yeah,another symptom is sever headaches. They get so bad that I need to rest my eyes and lay down. I've also had red eyes that hurt. Well,I need to get off of here and give my girls lunch. Talk to you all later!!
I also wanted to say that my menstrual cycles have been so unpredictable. I've had 2 this month that were 18 days apart and this last one lasted for a week. Has anyone had/have problems with cycles? I also develop alot of cycts. Since October they've been messed up. They're October 15th,November 9th,December 8th,January 5th,February 1st,March 2nd,and March 20th.
Just wanted to let you know I just got back from the urgent care. My symptoms got bad..severe headaches,chills,sweats. It turns out I have something else(not lyme),and i have bronchitis big time. The doctor said my throat is really red..he was a nice doctor. He said hes gonna call me sometime this week to see how I'm doing. I just wanted to let you all know. I'm gonna be going to sleep anytime..he gave me some medicine that has codeine in it. Talk to you all later!!
I have been very interested reading this thread ,I was bitten by a tick over 20 years ago in England, husband got it out , no rash , didnt know anything about Lymes desease then,I remember I got a horrible ear infection few weeks later , terrible headaches , pains,and palpitations, again no hint of Lyme.. I also was so fatigued I took Iron Tabs thinking I was aneamic. I then got a bladder infection so was put on some anti biotics, for that.. after that time I seem to get better, however through the years I have had varying symptoms I have thought were allergies etc, I had have chronic hives ,which have got better but bad all round my neck at presant, aches and pains insomia for years, I have low blood pressure, get Raynauds and cold if the temp drops. ,the list goes on. I thought maybe the antibiotic cured it I did have a Lyme test a few years ago, was negative, however I am feeling worse again, my long winded question is can Lyme have always been there , all these years and reemerge every now and again?
Yes - lyme can re-emerge years later - thats my opinion, I have no medical training it is only from the 'hours' I have spent researching lyme. Many people say they have had all thier symptoms disappear - only to re-emerge months/years later. I feel quite often it reappears when the person is under a lot of stress.
I have not been diagnosed with lyme but am seeing LLMD soon. LYME tests are not reliable. I had a tick attatched for more than 24 hours and it was engorged -thats why I have been questioning my 'symptoms' which started following tick bite. I had not heard of Lyme at the time. It is a clinical diagnosis where serology tests can help to confirm.
There are many 'more' knowledgeable people here and I am sure you will get more replies once they read your post.
I live in England - southwest - which is where I got the tick bite feel free to ask me any other questions. Take care.
I was living in Cornwall I know it was in deer country ..but noone mentioned Lyme desease then ,not where I lived..when I got all these strange symptoms I still didnt realise ..then I did read something in the US and had the test done..came back negative, however on and off through the years I have had many of the symptoms associated with Lyme ,I am left with, is it possible it comes and goes.I have googled it but there is so much misinformation and muddle out there I am not covinced I would get anywhere perhaps just end up costing the earth..
I've seen you over on the healthy cooking forum, right?
I can't answer your Q with any hard scientific backing. But from what I've read and grown to believe about Lyme, I think it is possible to be exposed to Lyme, but have it stay dormant until some event such as stress or another illness wakes it up.
I don't recall a tick bite. Though I grew up in endemic Western NY and now live in an endemic area of Maryland, I actually started to notice my illness when I lived in Philadelphia, right after a very stressful time in my life and a round of other illnesses. So while I'll never really know, I think I was exposed earlier and that it took hold later.
My LLMD ("Lyme literate" physician) agrees with this hypothesis. Especially since my earliest signs were neurological, which is more often associated with late stage Lyme. I also had non-specific white matter lesions on a brain MRI done only a month or so after my symptoms got "bad" for the first time.
Lots of people who are sick for a long time before getting treatment also develop chronic Lyme that can be driven into remission, but can reappear. That also suggests that Lyme can go dormant in the body, but still be there with the potential to act up later on.
Even without or before treatment, some people can exhibit a relapsing-remitting pattern, which I also think is consistent with Lyme going through dormant and active cycles.
Again, most of what I say is based upon personal experience and testimonials of other patients. However, since Lyme is so poorly understood, underestimated, and possibly under-diagnosed, it's really tough to get any hard evidence.
Two really great (in my eyes) resources are the book "Cure Unknown" by Pam Weintraub and the (still unreleased) documentary "Under Our Skin." Both have websites loaded with content that you can easily find by searching the titles.
Like gorbybelle suggests, feel free to start a new post telling us more, it may attract more attention than staying on the bottom of an older thread.
Reading your story reminds me of mine! I was bit around 30 years ago and had the bulls-eye rash. All my life I've had immune issues, headaches, taking longer to recoup, some hives (not a lot), tiredness (which people really don't understand...) brain fog, etc. I always thought I was just a "sickly" person but now I'm beginning to wonder if I had Lyme Disease and never knew it!
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