Does it stay or go away?

I was bitten by a deer tick in 1998, I was very sick for months and took a ton of antibiotics. I had the classic bullseye rash and very high fever. Ever since then I am always sick, there is always something wrong with me. I am only 39 and I feel like I have arthritis in my legs. Somedays I cannot even get around. I haved asked many doctors if this stays with you or does it go away? Never got a straight answer. Does anyone know?

[tory2457]

I can only offer my opinion,,,from what I've learned, read and experienced.

It sounds as if you were treated according to the IDSA guidelines.

I would suggest you find a doctor who specializes in Tick-Borne Illnesses. Lyme disease and the co-infections that go with this illness isn't easily "cured" in a few weeks time. Although, the current guidelines state just that.
You don't get a "straight" answer because of the current guidelines. They don't believe in Chronic lyme disease. Another words, it's all in your head. At 39 it's normal to feel lousy..!

It's your health, like the rest of us, we needed to become our own advocates and learn about this disease.

There are doctors who can help you find your way to good health. Many of us have to travel to see one of these good souls..until the guidelines are changed we stand alone (as a group)  in the fight to wellness.

ilads.org

Good places to start to read and ask questions.

Best to you,
tory

[desertgirl]

thanks for the info, i will check it out.

[cave76]

Tory  said it best.

You will have to fight long and hard to get the correct treatment, as a lot of us have.
But the fight is worth it.

From your screen name, are you by any chance in the Southwest of the US?

If so--- your chances of finding a nearby llmd may be more difficult.

There is at least one in that area, who believes that people can be helped by his protocols, which often include alternative 'cures'.

You will have to make up your own mind if you want to go that route. I, personally, wouldn't.  These tbi's are bacterial infections that need abx to kill them. Even then they're hard to eradicate.

Not that some herbs and supplements aren't a good adjunct. But not INSTEAD of abx.

[tory2457]

desertgirl,

I will now agree with cave on needing abx in order to get rid of this infection. I agree also, that alternative means is always a good idea. I supplement with lots of vits and minerals such as B12, Magnesium, Fish Oil; but I am using antibioitcs to get better..for a year now- and I have had 2 colds.

btw, Read about why we can be on long term antibioitcs...and don't become resistant.  

I can tell  you that at age 30 I was diagnosed with MS. Treated for it ( when they came out with drugs for MS), and after reading about the Lyme/MS connection, decided to get a lyme test.

yup, I have Lyme disease and am getting well.

Misdiagnoses unfortunately happen, lyme is the Great Imitator....

Hoping you begin to get your life back,
tory

[desertgirl]

thanks everyone for your posts. i am still rather confused about this whole thing, i already have chronic fatigue syndrom (syndrome), ebstien barr virus. i have been seeing a new doctor and today was my second appt. i brought him all of my paperwork from 1998 to show him i have lymes disease. doctor after doctor told me it goes away. well it doesn't and that explains why for the last 9 years i have been very ill and have not been able to hold a job for a year at a time. over the last year it has gotten worse, i never go anywhere and i cry alot from all the pain when i do get out. i had a feeling it was some sort of arthritis. anyways the doc says there are three stages of the disease and i am probably in the second with onset symptoms of rhemotroid arthritis (sp?). i have tried looking up info on the net but all i get is mumbo jumpo! does anyone know if this could be true?  i have to get more blood test to be sure, but they have always shown negative.

[tory2457]

I hope others jump in here also...

this is what I know.
yes, LD does effect our joints --IT LOVES our joints and synovial fluid.

The 3 stages? of LD..yes, the spirochete turns into a Bleb, then cyst form and in between there is the L form..Research states that when it turns into a cyst form this VERY smart bug can then go back to a spirochete.

you're not alone in being confused about LD. Hang in there and continue to read and ask questions..

Are you seeing what we in the lyme community call a Lyme Literate Doctor? or LLMD? Is this doctor a member of ILADS?

If not, you probably won't be treated long enough. (that's another story).

First things first, find a doctor who understands LD and all the co-infections that goes with it...

and then you will begin to recover.

I have a sister-in-law that has similar symptoms as you. But she even had Sjogren's along with CFS, RA.. . after 20+ yrs of struggling with her health and then learning about my new diagnosis; she get an IGeneX test, and yup she has LD along with a CDC positive test for Babesia! Wow was she surprised..

she too is on her road to recovery.

the best,
tory

[patsy10]

I would suspect late stage lyme (3) by the amount of time you have had it.  I really don't think it is curable at this stage but I think it can be treated to some degree.

[cave76]

Your plight is the same as thousands and thousands of others. Get to an llmd if you can.

I have had nothing but negative blood tests for Lyme---- but got "lucky" with my first spinal tap with a positive.

So blood test results mean nothing in Lyme.

Then why take them?? Sometimes the patient just has to see that "positive" before even they believe it, if they haven't done all the reading to understand how that can be.

Other times, it's because the insurance companies want to see that 'positive' so they've pay on it.

However, even the CDC states that Lyme is a clinical decision. But it usually means a Lyme Literate MD is the one needed to make that clinical decision.

I'll post a really good explanation of how one can have a negative blood test and still be positive with Lyme. (And it looks as if the other tick borne illnesses may be following suit. :()

[KYLYMIE]

Hang in there! I'm in KY...another "Lyme isn't here" state.  I'm in the "final" stage i.e. heart, lung, brain damage.  I assume that you've been to LymeNet, you'll find the most, the best and the correct LD info there..at least that is what I believe.
I was on IV Rocephin for nearly a year when I began to feel GREAT.  Then my line came out. My doc here refuses to order another PICC line and my hero doc in NY has closed his practice to focus on research.
Don't stop searching for a LLMD.  Arm thyself with any LD info you feel applies to you and have a sit-down with them.  Let him/her know you know about this monster!
All the best,
KYLYMIE

[redhed]

wow.  this has been an amazing find.  sorry i didn't find it earlier.  i have just gone off abx after two hard, intense years of treatment.  on the plus side, i am so much better it's amazing.  i was nearly crippled by the time i found a doctor who recognized the symptoms. (she had lyme herself!)  she hit me good and hard with abx, and i switched, hung in there, took flagyl (nearly killed me) and didn't give up.  had the support of a great guy too.  so, i'm off the meds for a month now.  saturday, i worked out at the gym.  yesterday, i played tennis.  and did good.  i was soooo happy.  i just get stronger and stronger.  still have some joint issues, but i'm living proof that you can get better.  maybe not like before, but my life is good again.  i understand that i will have to be vigilant and care for myself very carefully, but that's ok.  hang in there, it took me years to recover this far.

[rob122]

does lyme disese (disease) kill

[Wolf32]

I have the following symptoms.
A tick bite with some mild bleeding (I removed the tick and went about my business), within a few days, a secondary rash that itched.  I scratched it and skin came off and water came out.  Then it bleed.. It wasn't a ring around the tick bite, but it was a rash about 1 to 2 inches away from the tick bite.  (I don't really know if it was a deer tick, it was the flat black tick..)  This was 4 to 5 weeks ago. Within 1 to 2 weeks at the most of that. I started having these strange headaches, just a dull ache, but, something in my head felt like it shouldn't be there, and I just wanted to reach in and grab it out...  My skull feels slightly swollen at the top.

I've also been experiencing dizzeyness the past few days.  Some slight spots on my vision. Not really blurred or impaired, but, every now and then I get a dark spot..  

My whole head just aches though.  And concentration is really limited.  

This doesn't sound like the classic symptoms of lyme disease, but a rash so close to the tick bite (not in the bulls I pattern, just a a rash with no shape at all, near the bite.)  The bite and rash on the shin of my leg.  

neither the bite nor the rash have healed in the last 4 to 5 weeks.  They are both pink. Slightly closed, like they are  just a week out from healing not 5 weeks.  

I also have fatigue and run down tiredness feeling, along with depressive thoughts that definately are not normal for me.

Is this a sign of Lyme disease just not typical signs, or is there other tick born infections? or some other infection entirely?  I see my symptoms as being similar, but not classic by the book symptoms.  

How soon do you reccomend seeing a doc?

[gorbybelle]

I would say - your symptoms could very well be lyme - headaches - vision issues - etc;

if these health probs. have only started since the 'bite/rash'  - then it seems highly likely this 'tick' has infected you with something?

you need to see a doctor - if I were you I would be wanting to get on some antibiotics - sooner the better .

[patsy10]

Welcome to MedHelp.  If it were me I would see a doctor ASAP.  Lyme often starts with a flu-like illness.  Your symptoms sound very typical for early lyme to me.  Even if it is not lyme your rash has not healed and should probably be evaluated by a doctor.

[wonko]

Is there an echo in here?  I would also suggest that you seek out a Lyme literate doc.  Your symptoms do sound consistent with Lyme based on my own experience and reading as a layperson.

[Chatterbox58]

Wow, most definitely see a Dr....sounds like lyme, all the symptoms I had most definitely.  Starts outs with the rash, then flu-like symptoms.  After that I had the neck/head pain.  I had MRI's done on my neck and head.  Your head feels like it's swollen...very weird feeling.  I kept telling them I thought something was wrong with my brain...had the tests done, I do have the white matter, they aren't worried about that, however I am after reading the Cure Unknown book, seems very common in lyme.  Although there are no lesions Thank God!!!.  I went through therapy for the neck, really helped me.  Sure hope that does not come back.  Wonko, that book is fantastic.  Wolf you have to read it, Cure Unknown by Pamela Wintraub, something like that.
Good luck to you!!!

[statenislandmom]

I was diagnosed & treated for chronic lyme disease back in 1994. I had the I.V antibiotic treatments at home. They told me the treatment can only be given for 3 weeks & that I still wasn't 100% but that there wasn't anything else they can do. I had fluid drawn from my knee, I had the memory problems, the severe joint pain, migraine headaches... you name it I had it. Now 15 yrs later I am going through every symptom all over again. I have yet to see my Dr about it because the symptoms just got worse. I will be making an appt very soon. I just found out about  recurring Lyme Infection. I had no idea this could happen. We'll see what the Dr. says

[Pry72]

I am currently being treated for Lyme disease... 3 weeks of abx (6 days in now)... I WAS feeling so much better but today the burning sensation in my elbow is back.  I suspect I've had LD for 7 mos, but had accelerated symptoms (the Drs think) b/c I'm also HLA B27 positive.  I'm not an expert, though at times I feel I know more than the drs I've seen re: Lyme, definitely keep pushing for treatment... keep searching for a dr to LISTEN. I went to a Neurologist, Rheumatologist and my PCP - all of which disregarding me b/c my blood test was negative.  My Opthamologist was the only one listening and taking me serious b/c of the Iritis I developed, but he backed off once the Rheumatologist said "no way is this lyme - your blood test is negative" and then I developed some skin condition (web-like markings on my arms and legs - Livedo Reticularis - he said "Drs know this is hard to treat all of your symptoms - I can't believe no one has" and he treated me there on the spot.  Now I'm just hoping we are right b/c you do feel unsure when there is no blood test to confirm, but many LLMDs say "treat based on the symptoms not the blood test" I'm hoping they are right and I will feel better and it won't be 'chronic lyme."  All of you, be your own advocate and I hope you will find wellness!!

[Hope75]

I think I've had it since the 80s, so I'm being treated with orals by an LLMD....I am doing much better.  Hang in there!

[Chatterbox58]

Oh boy...haven't been on in awhile...I was diagnosed with Lyme almost three years ago now...went through alot..rash,flu like symptoms, neck problems, floaters, went on doxy and herx badly...my tests now are negative..but guess what now i am having hip problems, had a cortesone shot yesterday, I have AVN wondering if it's from my perthes or from Lyme.  I am leaning toward the Perthes disease, but not completely sure.  Any suggestions.  i may need a new hip soon.  Take care everyone long time no talk..lol

[22dreams]

That's horrible about your hip. Perthes is dx'd in childhood, isn't it? have you had it for that long? I've heard that some people have an adverse reaction to cortisone and actually develop Avascular Necrosis from it.

Lyme disease can cause Osteo & a host of other issues when the bacteria dessimate so I think there is no way to know for sure. Osteo is a trademark of so-called classic lyme disease although ppl can have it with absolutely no joint/bone involvement whatsoever.
Testing negative for lyme doesn't mean you don't have it, as I'm sure you know.

Sorry I can't provide more insight. A LLMd may be able to. Good luck to you.

[Chatterbox58]

Yep dx'd in childhood...had it all my life....thanks for the insight...good luck to you also.  I already have the AVN so i think the Doc is thinking I can't make it any worse lol

[Laybaby]

thank you so much for putting all of your information up on this site! i am going to the Philmont boyscout ranch in New Mexico in about a month (BTW im a girl haha). My friend who is also a girl is coming with me too. she got diagnosed with lyme disease about a week ago and i was so scared that she wouldn't be able to go with me! Hopefully she can.
-L

[joyced1956]

I have been having trouble walking, my legs feel like lead and my hip hurts terribly.  So tired all the time, floaters in both my eyes worry me to no end! I can't even walk around town with my husband to look in any of the shops because my legs give out so quickly. Had several tests done all came out okay, then the doc ran a test for tick bite and said it  showed a possibility Rocky Mountain Spotted fever. I did have a serious tick bite 3 or 4 years ago, why is it just now showing up? I hope the antibiotic works! I am so sick of not being able to do anything!

[ree427]

I am not as familiar with Rocky Mountain Spotty Fever as I am with Lyme and some other co-infections. If it works like Lyme, Lyme can be dormant until your immune system gets suppressed, then symptoms appear. Did you get tested for Lyme and other co-infections also? It's possible that if you have one co-infection, you might have others and/or Lyme as well. Is there a chance you were bitten by a tick again? You don't always get a rash.

[candycoated]

these are the same symptoms i had. i have lyme,get to a doctor .i was treated with the first round of antbotics an i feel 95% better.

[JackieCalifornia]

To my understanding, RMSF is not as hard to cure as Lyme can be when it gets entrenched.  A couple weeks of doxy is the usual treatment, from what I read.

[rcougar84]

I was diagnosed with rocky mt spotted fever three years ag from a dear tick bite, but only after weeks of misdaignoses.  I didn't show classic rash or fever just aches pains and weakness.  This is said to be cause of my now fibromyalgia.  I take 29 pills a day and have many flair ups. My rheumatologist says I will never be off these meds due to special circumstances, says it's call fibromylgia (fibromyalgia) Lyme disease, is this true, that it is so rare and ever lasting

[JackieCalifornia]

Welcome to MedHelp Lyme --

Sorry to hear about your illness -- I have one big suggestion for you:  find a new doctor for a second opinion.  

There is a huge split in the medical community about Lyme disease, and many MDs do not recognize Lyme as a serious or long lasting illness that requires more than a couple of weeks of antibiotics.  Lyme is a complex infection that is not as simple as that, unless it is caught almost immediately after the initial bite.

The doc who believe that Lyme is hard to get and easy to cure have a very closed mind about continuing symptoms such as you have, and one of the dodges they use is 'fibromyalgia' -- which even the TV commercials for painkillers say "is thought to be caused by" a whole assortment of vague and unrelated possible causes, including "overactive nerves".  In other words:  the docs don't know really what causes fibro or how to treat it.  

One leading possibility is that fibro is really Lyme disease, the symptoms of which line up very closely with those of fibro.  The MDs who would most naturally be experts in Lyme include rheumatologists, but rheumies and infectious disease (ID) docs are among the leading deniers of Lyme as the cause of much misery.  The docs who first identified 'Lyme' disease around Lyme CT a couple of decades ago did some preliminary research and decided that Lyme was hard to get and easy to cure with a couple weeks of doxycycline, and that is where their research stopped.  Those docs are still highly active in the medical world, and their views are cast in concrete.

More research by others has found that Lyme has peculiar characteristics that make it difficult to cure with a couple weeks of doxy, unless the infection is discovered almost immediately, which it often is not, and that there be a tick seen and a circular red 'bullseye' rash, and that Lyme occurs only in the NE and parts of the West coast.  Not true, because ... ticks can't read maps, and they hitchhike rides cross country every day on dogs and people, and the bacteria are IN docs and people everywhere as a result.  

Your doc sounds openminded enough to call your ailment "fibromyalgia Lyme disease", so he's aware of Lyme as an issue related 'somehow' to the collection of symptoms called Lyme .... but it also sounds like your doc has drunk the koolaid about what the Lyme deniers call 'post Lyme syndrome' -- meaning that you HAD Lyme, were treated with a couple weeks of doxycycline, and still have symptoms, but you by definition do not have Lyme because you had 2 wks of doxy.  Therefore they call your symptoms a phantom of a now-cured infection, and you're stuck with it.  Hence the fancy tag of 'fibromyalgia.'  

This makes no logical sense, and more progressive thinkers in Lyme diagnosis and treatment have determined that for reasons specific to Lyme and a few other diseases, two weeks of doxy doesn't do it.  

Your current doc probably believes sincerely in what he is telling you, but if you were my best friend I would drag you to a Lyme specialist without delay for a second opinion.  After 19 docs told me they didn't know what was wrong, or that I was just anxious, or I was at 'that stage' of life with lots of family changes going on, blah blah, the 20th doc in desperation ordered a Lyme test, which came back positive.  The doc told me however (this is a direct quote),  "Oh, you could not possibly have Lyme.  I have patients with Lyme ... and they are all ... near death."  Gee thanks, doc.  

I took the test results and found a Lyme specialist, was diagnosed with Lyme and another infection often carried by the same ticks, was treated and cured.  It took about a year, because Lyme has particular characteristics that make it a long treatment course, and I can bore you with those another time ... but I would most definitely find a Lyme specialist for a second opinion.  Your doc means well but is following the current (mistaken) medical orthodoxy about Lyme.  You don't need to tell your doc you are seeing another doc for a second opinion -- none of his business.  But do this for yourself.  

Lyme will not go away, so your rheumie is right that what you have is 'ever lasting.'  That is, ever lasting if you don't get treated properly.  I don't know that we have anyone posting here from SC, but here are two suggestions:

1 -- post a new comment here, by clicking on the brownish/orange box near the top of the page 'Post A Question' and title your inquiry something like "Need LLMD near Charleston SC" or wherever you are, or just say "Need LLMD in South Carolina area".  Then in the body of your message also say how far you can travel.  

We do NOT post the names of Lyme specialists (LLMDs) in the open here, because local and state medical boards often run them out of business, so any replies to you would probably come as a 'private message' on this site -- in the upper right corner of this page, you will see:  

                       Inbox / Logout / My Shortcuts

When someone sends you a private message in response to your post, you will see a number next to Inbox, like "Inbox (1)".  Click on Inbox, and you'll find the message easily.

(2)  The other thing I would do at the same time is send an email to

                          contact [at] ILADS [dot] org

and tell them you are in Charleston SC and how far you can travel to see an LLMD.  They will respond with one or more names of docs who are members of ILADS, short for International Lyme and Associated Disease Society, which is the main voluntary group for docs of all types who think broader and more progressive thoughts about Lyme.

(3)  Also search online for something like

                       LLMD Charleston SC

and                  LLMD South Carolina


and                  LLMD  Carolina

so that you are throwing a broad net.  I don't know how the politics of Lyme are expressed around Charleston, but in some states, the medical boards do not allow docs to treat Lyme aggressively.  Texas for example has virtually no LLMDs for that reason.  

(4)  Do not give up.  I know I was ready to give up, but I am incredibly stubborn and knew there was something seriously wrong with me that wasn't because of hormones or family issues or any of the other garbage docs will throw at you because they are clueless.

Let us know how we can help -- we've been where you are --

[JackieCalifornia]

and PS --

I always forget something!  No doc will call him/herself an LLMD .... it's patient slang for docs who think bigger thoughts about Lyme than your current doc seems to have.  An LLMD can be any specialty or none, but they are seldom found among neurologists and rheumatologists (!), because those specialists are part of the groups that first identified Lyme, and the orthodoxy runs deep.  A neuro who treats Lyme like an LLMD  would get run out the clubhouse pretty fast.

LLMDs are sometimes infectious disease (ID) docs, but they can also be GPs, internist, immunologists, and others.  What counts is their point of view and openmindedness.

That said, there are some nutjobs out there who say they are LLMDs, but they really are too far out there for my taste.  Take it one step at a time, and you'll find the right doc.  And if you get the wrong one the first time (like one who wants to sell you a boatload of vitamins from his office), keep looking.  Vitamins and supplements were a big part of my recovery, because of the ravages of Lyme, but I got mine at the store, not from my doc.

[rcougar84]

Thank you so much for your advice.  I will be seeing a new rheumatologist this week, hopefully have different input than last one.  Just can't imagine after three years of all these meds that my liver can be in a good state.  And this week I'm having the worst " fibro flair up" in 3 years. Now they got me on hydrocordone on top of all my other meds.  I just want my normal or near normal life back, for my young granddaughters sakes.

[JackieCalifornia]

Let us know how it goes with the new doc.  As a group, rheumatologists are not great believers in the serious nature of Lyme ..... they sometimes talk about "post-Lyme syndrome" or start calling something fibromyalgia because they simply don't believe that Lyme isn't always cured with a couple of weeks of doxy.

Fibromyalgia is not a defined disease or illness:  it is instead a collection of symptoms which have been given a made-up name (myalgia means pain, so 'pain in the muscle fibers' -- not very specific.)  Even the tv commercials say that fibromyalgia "is thought to be" overactive muscles or something vague.  

Are they giving you hydrocodone or hydrocortisone?  Hydrocodone is a strong painkiller; hydrocortisone is an immune suppressant, which is the kind of med that Lyme specialists do not generally prescribe because the immune system needs to be up and strong when faced with a bacterial infection like Lyme.

Anyway, let us know how it goes -- sending you good thoughts!