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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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how long

For years I have been going to doctors telling them I just don't feel right, sometimes worse then others. Nothing major but just less life quality. I seemed more stressed over little things and not sleeping well neck and back pain, exercising took down more then up. I used descriptions like - I feel I have toxins in my joints.

Then a few years later in 2004, I started having these odd spells, getting dizzy, I would almost go unconscious and very limp. For this, I was told it was panic attacks. Over the years it was "early perimenopause, fybromyalgia, and oh you can be depressed and not know it so take these". I would not. In 2005, my neck pain was so bad I did start getting down and feeling hopeless. My weight is good. Until very recently, I had almost too much energy, my motor seemed stuck on.  ....This is getting too long - skipping to 2009, when I went on a backing packing trip and returned with hip pain and began limping, neck got worse, noticing hair thinning and very sound sensitive. Every noise goes right thru me. After a trial of antibiobotics, the first day was like a miracle. The pain at the base of my head/neck went away but within a few days a felt very sick, ended in the ER 3x. Then I started having involuntary muscle spasms, jerking and cross between electric shock and numbness in my left arm and leg. This finally got me past the 'its menopause" to see a neurologist.

Lots of odd tests and giving blood resulted in Western Blot (WB) positive nabds p23 & p41 - the two recognized by the CDC for Lyme but my IgG antibody was negative. Thinking about past kid issues, I had both my kids tested, different doc different lab.  My son (who had a blood and tic disorder years ago) had a positive IgG antibodiy with WB bands 41present and 23 Equivical. My daughters results show less information with Equivocal noted on the IgG and bands 41 present with 23 Equivocal.

Does anyone know what this all means and how long can one have Lyme before symptoms appear? Doctors are not convinced I have this but did start me on Doxy. I feel worse. It takes 2 hours to shower and dress, if I even make it that far. I have to tell myself every step. U R getting a hair brush, now brush your teeth. Open the dresser draw...why I am here?? Oh, socks, get socks.  Then the next hour it can be almost normal again. Wonder how I typed this? It took 3x would it should have.
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Greetings, fuzzykiwi.

You are asking all the right questions, as near as I can tell.  

You ask:  how long can one have Lyme before symptoms appear?  Good question.  I think the answer is 'it depends' -- useful answer, huh.  (I'm not medically trained, so this is anecdotal commentary coming from having dealt with Lyme for several years now and knowing other people who have it or have had it too.)  I got terribly ill after a trip the East Coast in 2006, and it turned out to be Lyme and co-infection ... and I always wondered why it hit me so hard, when other people it doesn't phase much.  In hindsight, I think I may have gotten Lyme originally in 2004, also on a trip back East, but it just left me feeling droopy and vaguely fatigued in little waves, and my heart would beat oddly and leave me feeling slightly weak, but it always passed.  Happened in the MD's office one day and he freaked out, sent me for tests [not for Lyme of course] and all came back negative, so he shrugged and sent me on my merry way.  The old 'probably early signs of menopause' dodge.

Then when I got SO sick in 2006, it took a while and a bunch of MDs, finally found my way to an LLMD and got properly diagnosed with Lyme and Babesiosis, which is akin to malaria.  Got treated, was just about well, got another tick bite in 2009:  Lyme again plus a different coinfection.  Still dealing with that.

So this is a long way of answering your question 'how long can one have Lyme before symptoms appear?'  I think the answer is, 'quite a while.'

How long is the course of treatment with doxy?  Mainstream medicine usually give it only a few weeks, compared to LLMDs (that is MDs who take a broader view of diagnosis and treatment of Lyme) often/usually treat much longer, because Lyme is cause by a tricky bacterium that hides in cysts and is difficult to eradicate.  That's all aside from coinfections (bartonella, babesia, ehrlichiosis, and couple of others) which have to be tested for separately and sometimes treated with drugs different from Lyme drugs.  Doxy works on some of the coinfections but not all.

Your symptoms sound like those many of us here have:  there is not one specific set of symptoms, because Lyme, like the syphilis bug it is related to, is called 'the great imitator', because it presents so differently in different people and can look like other diseases.  I see you live in Milwaukee, which is one of the original hotbeds for Lyme+.  That means there is experience in the medical community with this disease, but also means that many MDs who take the old approach of 'a couple weeks of abx and you're good to go' are probably well established in your area too.  

My best advice:  find an LLMD for testing and evaluation, then decide what to do.  We don't post openly here the names of LLMDs, because they are subject to harassment by their local medical boards.  If you go to ILADS [dot] org, there is a referral function there, I believe.  ILADS is the group to which the more broadmined MDs belong.  

I just googled 'llmd wisconsin' and found some old comments here on this medhelp forum from someone with Lyme who was seeing an MD in Milwaukee, but s/he wasn't thrilled with the MD, who was 'old school' and not very explanatory.  There are also some referral functions on the right side of the screen at itsaboutlyme [dot] org, but I don't know how good it is.  Digging around online is the best approach in my experience, but beware the quackadoodles out there, and there are a few.

Oooo, I see medhelp has added a 'top answerers' box to the right side of the screen here, and there is a dustybrown in Milwaukee.  Try sending a private message to him/her.  (It took me a long time to figure out how to do private messages, as messed up as my brain was ... I think it's this:   if you are logged in, you'll see in the upper right corner [below the wide blue bar] three choices: inbox/logout/my shortcuts.  Click inbox, and that's where you can send a private message ('PM') to dustybrown.  I think!  If you have trouble with it, let us know.)

You are asking the right questions, and hope you will keep asking till you get appropriate answers, whatever they may be.  Stay in touch!  
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Avatar_f_tn
symptoms can go undetected for many years.  i believe i got bit by a tick in the summer of 2002. i just got diagnosed at the beginning of jan 2010.  growing up i had sever hip joint aches, but my dad has degenerative hip dysplasia and i was a soccer player so we accused that.  i had migraines, but so had my mom so we thought genetics.  i had heart palpatations which took my breath away, but i had an ekg that showed a heart murmur which the docs said was it.  all these little abnormal yet seemingly explainable symptoms that would pop up every once in a while for a day to a week.

and as for you getting worse after starting doxy.. yup it ***** big time at this point. i ended up in the hospital as well and then i literally slept for an entire week.  i was as close to a coma as one could come without being unconscious. when the antibiotics kill off the spirochetes they release a toxin and thats what makes you sick.. thats herxing.  herxing can go on for a long time depending on how active the disease is in your system.  but it does get a lot easy as time goes on.  
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I suspect that I got infected in the summer of '02, but it didn't start to consistently and (until treatment) permanently affect my life until about 5 years later.  I was diagnosed 11/2008, and it took about 9 months of treatment to really "turn the corner" and reach a point where I trusted that I would recover.

For years, I had minor odd spells and occurrences that I swept under the rug.  Perhaps my relatively young age and relatively good health at the time of infection enabled me to keep it mostly in check.  The time when my illness came to the surface and erupted was during a period of great stress and changes in my life.  I think the infections are opportunistic in that way, they can wait until you are weak and then take over.
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Avatar_f_tn
I got infected 23yrs ago and had the typical bulls eye rash. Treated for 2 weeks with oral anitbiotics. 2-3 yrs later got it again but had no rash. Now they treated me with 3 weeks of IV therapy daily. Fast forward about 20yrs. Got really really sick almost 3 yrs.ago. Was in and out of hospitals and had many doctors and specialists. I pleaded for these 3 yrs to please give me a Lymes test. No doctor would. A couple months ago I brought my husband to a specialist with me and cried and begged for the test and he said OKAY! Then about 1 week or more later I received a note in the mail from his stating my test came out positive! The next day I had a PICC line put in me and had IV therapy for 28 days.
I'm still ill with autoimmune disorders, arthritis and neuorlogical problems!! I take pills.
I had been diagnosed with rheumatoid arthritis twice, fibromyalgia,etc..and was told by many that it was psychological.
It I wasn't my own advocate and didn't plead for the Lymes test, I would still be walking around with it and getting worse!
I just don't understand these doctors!!!
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Avatar_f_tn
Thanks for all the feedback. To what was termed herx, which the ER doc said is not a real thing with lyme, I started taking epson salt, peroxide, ginger baths. This was very helpful. At least enough to get me walking again and out 4 hrs in a day. GREAT progress. Then I started with herbal Neuro Antitox, which is either a coincidence or it works, but I have much less electric feeling in my legs. I think pulling out toxins is working so I took it another step and I was able to get a script for Cholestyamine. I learned it binds toxins to help eliminate them. I consume distilled water as much as possible. Since the doxy and all this, my neck & spine pain has gone from severe, always there to mild, occasionally there.

Strange things are now going on in my thigh muscles but it feels positive and I feel better than I have in months. I also starting acidophilus to head off any yeasties.  Still taking the doxy so I have to time everything to keep one form working against the other. I'm not thrilled to take any meds or having to research and treat myself but I can lay here really sick or do something. I am still very concerned about my blurry vision but the eye muscle pain is better. Now I just need some healing sleep. I am tired but this bug does not let me sleep. How can I heal without sleep? In a few hours it'll be pea pods and green tea for breakfast. (Alternating whole fruits & veggies as best I can. Cutting protein and also foods that tend to mold easily to help with detoxing). Glad I have someone to shop for me!
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Wonko,
I would be interested in learning details on your minor odd spells.  And I forgot to add - I am "waiting" to get into the popular/booked LLMD, because we ALL know "there just is not lyme in SE Wisconsin" and people don't recreate outside or have cars to travel. Twice bitten once shy.
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22 years for me, I think.  I was about 11yo when I had three ticks embedded in my scalp for a week.  I had lumps all over my scalp, to which the pediatrician shrugged off while removing the heads of the ticks (mother had removed body, head was buried).

Late Aug 2006- I started having probs I coudn't ignore - tingling, burning, weakness, fatigue, etc.  Looking back, with 20/20 hindsight:  achy knees, achy back, heart palps, anxiety (severe panic disorder in 2000's), depression, dizziness, low blood pressure, and others I can't think of at the moment.  Finally diagnosed Spring 2009 when I begged for an Igenex after getting a positive ELISA with negative "conventional lab" Western Blot.  Positive ELISAs don't happen often from my understanding.  My Igenex was CDC positive.  I was relieved!
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Update:
Just in time-I was on the last day of the neurologist prescribed 23 day Doxy script (100 mg 2xday) when I was able to get in to see a LLMD. I'm having night double vision (wondered why there were so many extra lights and cars with new double headlight system). Still having eye pain and severe sound sensitivity but spine pain was better for some time. He increased my Doxy (200 mg 2xday) and put me on a dozen things; supplements, herbs and such. My spine pain, muscle tingling, jaw stiffness and such returned on the higher dose.

When I read what we are all going through, it sounds like we are all on the worst trip of our lives. As soon as my neurologist did the spinal fluid check and it came back negative the health care system seems to have dropped me like a hot potato. My hospital bill and doc bills were denied. The Infectious Disease canceled my apt because my IgG was neg, even though the CDC West blot bands we present and positive. They told me the timing (season-time of year) does not make sense so it must be a false positive. According to the CDC, doctors can make a clinical determination but they don't know enough to do so or... don't want to deal with it.

This seems like it's going to be long and expensive. "You don't look sick. Go home and relax. You have a curable disease. You'll be fine".   We'll, I feel far from fine.

Hope everyone has many more good days then bad as we all keep pushing onward.
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Given the dismissive reaction from your neuro and ID doc, I'm glad you found the LLMD.  

It is long and expensive, but if you don't have your health, then what's left?  I hate paying out of pocket for my LLMD, but with treatment I got back to work full time.  I try to focus on the positive.

At my most recent appt with my LLMD, I told him that I'm relieved they will still treat me even though I look and seem fine.  The LLMD replied "Around here, we know that 'but you look so good' is just a compliment and not an indicator of how you feel."  The office I go to is very compassionate and understanding about how this disease affects us.  I hope you've found a good fit with your doc, as well.
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Would like help in finding a LLMD. Willing to go to NY,NJ,Penn.  
Wonko-Is your doctor in my area?
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I feel like I have turned a corner on my "lyme trip" despite my recent failed ID appointment where after they canceled my apts several times, I was able to get in to make my case with the great Oz- head of Infectious disease.  "You have been given the proper treatment so that should have taken care of it besides your serum tests show no lyme". My shock! Even though the CDC sent my city a notice of positive lyme blood test this doctor said I was negative. How does one go up against that? I had false hope I would get treatment covered by my (nearly $400 mo) insurance coverage.

I'm sticking with my out of network LLMD who has been the only one that has helped. His treatment ..so far so good. It was rough going when he doubled my abx dose but I stuck it out and sure am glad I did. I am breathing so much easier, years of abdomen pain when I sneezed gone, no more electric feelings in my left arm & leg, brain fog, sound sensitivity and neck pain is so much better. My blurry vision seems less too. Mid-spine pain and hair thinning next hopefuls.  What's next for Kiwi's doxy/lyme trip?
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Hang in there with your LLMD.  You'll just have to pay the out of network balance, if you can.  It stinks, but is true.  No ID doc is going to help out, just LLMDs.  I'd be really shocked if ANY ID showed an interest in Lyme and if so, he would be an LLMD already.  

Anyway, its great you are seeing improvement.  Yes, hang in there thru herxing and treatment side effects as its all worth it in the end and we don't know when the "end" is, if ever.  We'll probably fight this bug from one degree to another for our entire lifetime and I've made peace with that.

Hang in there, doxy gives me headaches and nausea.
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