Chronic/late onset Lyme

I know several people here have had bouts with Lyme, and I don't recall anybody on that list saying they presented with the standard symptoms. Do any of you have ideas of how long it was from probable exposure until you developed symptoms? Any medical literature or other arguments that helped convinced your doctor to test? The doctors out here don't seem to have it on their list. Even then, it appears the ELISA test is region-specific--anyone know if this might cause a problem?

Thanks.

Not sure what you mean by Chronic/late onset Lyme, other than you need to find a doctor "who believes" before it progresses. Massive, in hospital IV antibiotics are required to knock it out once it's "Chronic/late onset Lyme", from what I know. My two were early, non chronic, target rash and migraine, treated quickly and still need 2 or 3 (three week, not 10 day) antibiotic courses. Call around. My first Doc phoned in the 'script without seeing me, just after hearing the symptoms.

jniehof said:

I know several people here have had bouts with Lyme, and I don't recall anybody on that list saying they presented with the standard symptoms. Do any of you have ideas of how long it was from probable exposure until you developed symptoms? Any medical literature or other arguments that helped convinced your doctor to test? The doctors out here don't seem to have it on their list. Even then, it appears the ELISA test is region-specific--anyone know if this might cause a problem?

Thanks.

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My symptoms:

headache and backache noticeably bad
raised, puffy red rash over various parts, generally torso
Bell's Palsy causing one side of my face to lose muscle control and droop

never saw the bulls eye but I was probably too worried about this weird rash and no facial control at the time to look

Not all cases have the bulls eye apparently anyway.

I convinced them to test with a simple admission I spent alot of time in the woods. It was on my radar.

I never could figure out when I got bit - I was out alot.

At the time, 8 years ago, the tests had alot of false negatives simply meaning you could have it anyway even with a negative result. That was awhile ago though.

Hope it helps.

I've had it twice, never had bullseye rash NOR tested positive on Elisa but positive both times with Western Blot. I believe that basic differences of the two testing methods have to do with an individual's immune response to different fragments of the bacteria itself, so -- most people will produce antibodies to the part of the bacteria that is used to detect antibodies in the Elisa Test, those that don't are usually picked up on Western Blot because its got a wider array of antigen types. Additionally, Western Blot methods are also identifying two types of immunoglobulins (protiens that antibodies are made of), IgG and IgM -- IgG is produced during a primary infection/exposure; IgM is produced later in infections or after a second exposure. I do not know if doctors interpret IgG as recent exposure and IgM as chronic infection -- that may be debatable. I'm sure you can find alot of literature asking this question on PubMed.

Symptoms for me first time around were generalized aches and pains and low energy; it took about six months of doctors visits to finally diagnose (Lyme in NY was relatively uncommon then, circa 1988??). Second time was ten years later, no rash but came down with sudden high fever, stiff neck and extreme exhaustion.

Doxycycline for 30 days was the treatment.

As far as I know (I work in the Clinical Laboratory Field), central nervous system involvement and chronic cases are rare, however this was not the case for my dog, who has secondary epilespy triggered by Lyme/Erhlichia coinfection, so it does happen. In general, the Borrelia spp. bacteria that cause Lyme Disease reside in joint tissues and occaisonal "flushing" of bacteria into the bloodstream is when both tests are most likely to be positive -- so diagnosis can be elusive. Additionally, this type of serological testing is based on an individual's immune response and is not necessarily correlated with bacterial loading, meaning, you could have a wicked amount of bacteria in your system but your immune system may not produce a large response (even below the detection level of the test -- false negative) or you could have a small amount of bacteria in your system and produce a large immune response, tons of antibodies = positive. Because of this, most doctors will treat based on symptoms -- doxycycline is relatively inexpensive and well tolerated so it doesn't hurt. Hope this helps. Feel free to pm.

Hope you feel better soon.

I've read of a recent reports in Science News of certain proteins which may differentiate Lyme disease and Chronic Fatigue Syndrone:

http://www.sciencenews.org/view/gen...t_is_it_from_Lyme_disease_or_chronic_fatigue?

Proteins found in the spinal fluid may serve as biomarkers to help doctors cut through the clutter of symptoms that show up in two groups of patients — those with chronic fatigue syndrome and others with lingering effects from Lyme disease. Different sets of proteins discovered in the two groups indicate these are distinct and distinguishable disorders and that both involve the central nervous system, researchers report in the February PLoS One.
...

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Although an early stage report, it may be good news (eventually) on the diagnostic difficulties of these two conditions.

Papa Bear said:

I've read of a recent reports in Science News of certain proteins which may differentiate Lyme disease and Chronic Fatigue Syndrone:

http://www.sciencenews.org/view/gen...t_is_it_from_Lyme_disease_or_chronic_fatigue?

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Promising! Thanks for the link.

Thanks all for the info. My symptoms are vertigo/room spinning, weakness in lower legs and fingers (I'm dropping dishes), slight blurriness/brightness of vision, and poor proprioception (if I look away from a plate I'm holding and look back, the contents are on the floor.) Plus a general lassitude. I didn't have any rash/swelling or prolonged fever or any of the usual early-stage symptoms, and this started in early October and has been gradually worsening since. (I left New England in mid-July, after lots of crawling around in Maine in June.)

Since the thyroid, glucose, mono, chest x-ray, and brain MRI haven't shown anything, I was thinking Lyme might be a possibility, but it appears it would be a very weird case. Will still ask for that bloodwork before I have to start driving an hour each way to see a neurologist. Can't get sick when I live within five miles of probably ten world-class hospitals, oh no, has to be now

Scary stuff. I had viral meningitis once and vertigo and headaches lasted about six weeks, the virus simply ran it's course. Here is hoping you have nothing more serious and get either an answer -or- better soon.

jniehof said:

Thanks all for the info. My symptoms are vertigo/room spinning, weakness in lower legs and fingers (I'm dropping dishes), slight blurriness/brightness of vision, and poor proprioception (if I look away from a plate I'm holding and look back, the contents are on the floor.) Plus a general lassitude. I didn't have any rash/swelling or prolonged fever or any of the usual early-stage symptoms, and this started in early October and has been gradually worsening since. (I left New England in mid-July, after lots of crawling around in Maine in June.)

Since the thyroid, glucose, mono, chest x-ray, and brain MRI haven't shown anything, I was thinking Lyme might be a possibility, but it appears it would be a very weird case. Will still ask for that bloodwork before I have to start driving an hour each way to see a neurologist. Can't get sick when I live within five miles of probably ten world-class hospitals, oh no, has to be now

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I had Lyme for years before treatment. I remember a deer tick on me about 7 years ago after being out for a walk in the Kennebunk, Maine Pine Barrens, but never saw a rash or bullseye. I don't usually fall ill to anything but minor and temporary blips.

Symptoms: sore throat, swollen glands, joint pain in hands, knees, neck, feet. joint swelling in ankles, confusion and difficulty thinking/concentrating/reading, word search, misspeaking words, light and sound sensitivity, floaters in my vision, hearing problems, feeling off balance, insomnia, hair loss, heartbun, "air hunger", night sweats, and most disabling has been incredible fatigue. I'd been to many specialists and had a number of diagnostics run, with the results, "I don't see anything wrong with you from my specialty's perspective."

Detection tests for Lyme done at a local lab were negative. After watching the movie "Under Our Skin" which was being presented where I work, at my insistance my doctor ordered a test from Igenix in California. That test showed some positive bands, though my MD was not able to treat me because there weren't enough positive bands. The Center for Disease Control, for surveillance, wants five bands and I had two. Many physicians interpret results looking for five bands. My new physician understood enough to base her treatment on my symptoms, but having the Igenix test helped.

I switched doctors to one more knowledgeable in Lyme, or Lyme Literate, as they say. I was immediately put on antibiotics. For the first six months I was taking Doxycycline. Because of the sun sensitivity that was changed to two other medications for another six months. Right now I'm off medication. I'm feeling better than I was, but I am still very, very tired. My neck hurts and I have strange skin sensations. I may go back on antibiotics.

I was also treated with doxycyline. 3 weeks or a month.

Don't make the mistake of eating shellfish while on it like I did.

erugs said:

light and sound sensitivity, floaters in my vision, hearing problems, feeling off balance..."air hunger", night sweats

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That's very interesting. I've been seeing floaters for a few weeks and I had to take a blanket off the bed...thought it was just spring but my girlfriend had to put it back on her side. Also some shortness of breath, but living at 7200' and having small lung capacity for my size.... I thought I was writing down everything slightly abnormal and that much of it would be unrelated, but this is sounding more and more like a pattern. (I also saw a posting elsewhere where someone had highly irregular heartbeat. Mine was so irregular the EKG machine refused to lock on.)

Thanks for the help, all. I'll keep you posted.

I did get the rash and photographed it before I ever knew that doctors have some kind of problem with treating Lyme.
Good idea to keep a record of everything, good days, bad days etc.

Other than the rash it was about 6 -8 months before I realized I had a full blown case of Lyme that had already progressed beyond level 1 even though I took the antibiotics about 3 weeks after I got the rash.

This is 3 years later...no meds from doctors, who often seem to barely know anything about the illness. I just got tired of going to doctors who didn't seem to know their "arse from their elbow"

I handle it now from hitting the herbal shops for Teasel which seems to help me get better or at least hold my own.

Good luck...as you know by now you are your own best advocate..

if you find yourself in a position where you are trying to educate your doctor ..it's a pretty good indication it's time to move on to another.

I had Lyme 2 years ago and was sent to the ER and they called in the infectious disease specialist who diagnosed me immediately with Lyme and another kind of infection that they never figured out. They wanted to do a spinal tap and I didn't want it....(was leaving the next day for Chamonix & Alps)...

My symptoms were headache, body aches, fever, dizziness, blurry vision, sore throat, swollen glands, etc...thought I was dying!

I had the definite large ring and it had an oozing rash in the center, which they felt was an added infection of sorts....they biopsied and tested for everything. My lyme results all came back negative, but because of the ring they knew...thankfully@!

They put me on a few different meds and gave me a few shots and I've been fine....thankfully!

Good luck and I agree if your Dr doesn't listen or believe, a new Dr is needed.

This seems like a good time to encourage folks to seek early treatment if they have been bitten by a tick or have any of the signs/symptoms of tick-borne diseases. I would also encourage people not to take NO for an answer when insisting upon treatment.

After a long trail run in Shenandoah National Park last June, I discovered a tick on my ankle. It had been there >48 hours, and even though the incidence of Lyme/tick-borne diseases is high in the mid-Atlantic states, I had to BEG the nurse practitioner at the urgent care clinic where I was seen for a course of doxycycline. ("There's no bullseye rash, so you don't have Lyme." Helll-LOOO-oooo?!) She finally wrote a 'script after I was reduced to tears. Yeah, I was freaking out - I have friends with Lyme and absolutely did not want to acquire it! A few days later I saw an Infectious Disease specialist in California, who said I had absolutely done the right thing by insisting on antibiotic prophylaxis.

Agree with SpiderSolo about many health care providers still not knowing a whole lot about tick-borne diseases. Education is key! Be assertive!

lyme

I have had Lyme 3 different times. Only on one occasion did I have the bull eye rash. The one time it did show it appeared in a few days. The last time my GP was hesitant to treat it and I waited too long before going to a Lyme Literate physician which I highly recommend. A western blot confirmed my case but by this time I had back and muscle aches and ice pick headaches. Good luck on it and as others said you have to be persistant.

Stinkyfeet said:

This seems like a good time to encourage folks to seek early treatment if they have been bitten by a tick or have any of the signs/symptoms of tick-borne diseases. I

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Yup -- my Dr in Newton MA will put her patients on a week of doxy if they call the office within 24 hours of finding a tick attached -- no visit necessary.

Save the tick when you take it off. I always give my patients the one shot dose of doxycycline that the literature recommends. I send the tick away to the lab to test for borrelia (the bacteria that causes Lyme). The test results are usually available in 24-48 hours. I do not wait the 6-8 weeks it takes for positive blood testing. If the tick tests positive, I start the 21 day treatment. You need to ask to get tested for Erlichiosis and Rocky Mountain Spotted Fever too since those are tick borne illnesses. I had a patient test postive for RMSF was surprised at that diagnosis. Most of the cases of Lymes I have seen did not have the bulls eye rash. I think i've seen the rash 2x.

Diagnosis and treatment of Lyme disease is a controversial issue. None of the specialists can agree on anything.