Lyme experiences?

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Here are official numbers for 2008 for Total / Confirmed / and Probable:

NE: 11,601 / 28921 / 6277

CT: 3,896 / 2,738 / 1,158

ME: 908 / 780 / 128

MA: 4,582 / 3,960 / 622

NH: 1,601 / 1,211 / 390

RI: 210 / 186 / 24

VT: 404 / 330 / 74

Glad I'm heading to VT for my weekend backpack!
 
Here are official numbers for 2008 for Total / Confirmed / and Probable:

NE: 11,601 / 28921 / 6277

CT: 3,896 / 2,738 / 1,158

ME: 908 / 780 / 128

MA: 4,582 / 3,960 / 622

NH: 1,601 / 1,211 / 390

RI: 210 / 186 / 24

VT: 404 / 330 / 74

Glad I'm heading to VT for my weekend backpack!
Not necessarily...

You have to divide each of those numbers by the population of each state to get the probability of catching Lyme in 2008. (Exposed population would be better than population, but I doubt that one can get that number.)

Doug
 
It is maddening when one knows one can take their dog to the vet and have a +/- dx in about 10 minutes, get a month of doxycycline, a few Doggie Painkillers, and have the dog back in reasonably fine fettle within 24 hours.

My dog actually had great fun with a month of " Velveeta Time" ( Velveeta being what we wrapped her daily doxy dose with.) SHE was disappointed and WAY bent out of shape when her meds ended.


I've been there, done that, with my dog, requested the Idexx SNAPP and < bang> the vet and I knew what we were dealing with.

I know, I know different species, different symptoms and vector behavior isn't always cut and dried as we'd like to think, but tick-borne illness isn't so new that we, as humans, shouldn't be receiving a trickle up benefit from so many years of veterinary experience.

Sorry, that was a rant, and its off, now.

Breeze
 
I hear you with that feeling of possibly "falling over at any minute." The pain, too, but I haven't heard others mention the fear of falling. I feel as though I'm stumbling my way along, like a drunk, not at all in a straight line. I make up for it by pretending I'm dancing or looking around at the scenery. :eek:
That's actually a good way of putting it. I did feel sort of drunk. It wasn't so much pain in my knees that was making it hard to walk (though it was there) so much as a general "weird" feeling that did it. I was trying to describe it to the doc, but nothing really did it justice. It wasn't exactly vertigo, lightheadedness, or a feeling of being buzzed. It was some of all three.


Good luck with your treatment.
I'm still feeling pretty bad, but I haven't relapsed into the really bad stuff since I've been on the doxy, so I'm hoping that means it's working.
 
A visit is important, to exclude other diagnoses or to pick up things you might not recognize (such as Lyme-related heart rhythm problems as a source of lightheadedness!!!), but 3 weeks is typically the norm around here, unless it's just a rash - then only 2 weeks. It's important to keep in mind that the official guidelines are vague, and the 2 vs 3 week thing is more local custom than anything truly evidence-based. Right answer is, we don't know.

The 2 versus 3 week treatment is not a custom but is evidence-based. A randomized placebo controlled, double blind study found no difference between the 10 or 21 day treatment with doxycycline. There are also other studies performed in Europe with the same conclusions. Below is the reference:

Wormser GP, et al. "Duration of Antibiotic Therapy for Early Lyme Disease." Annals of Internal Medicine. 2003;138:697-704.

Of course, more studies should be performed, but right now, the evidence points to a short course of antibiotics is just as good as a longer course.

Aviarome
 
Not necessarily...

You have to divide each of those numbers by the population of each state to get the probability of catching Lyme in 2008. (Exposed population would be better than population, but I doubt that one can get that number.)

Doug

Probable means possibly but unconfirmed lymes case. It is not a probability. Although overall NE does not add up each state does. I would like to see the deffinition of confirmed although it is most likely to be ELISA or Western confirmed and probable would be anecdotal.
 
Probable means possibly but unconfirmed lymes case. It is not a probability. Although overall NE does not add up each state does. I would like to see the deffinition of confirmed although it is most likely to be ELISA or Western confirmed and probable would be anecdotal.
I wasn't talking about that.


I was talking about the probability (risk) of getting lyme if you visit a state:

Est_Probability_of_getting_Lyme=number_of_cases/total_number_of_people

The table in question only gave the number of cases in each state which is insufficient if you wish to estimate your risk of getting lyme if you visit a state.

(All of the above effectively assumes that everyone spends the full year in the state. Obviously, if you spend less time in a state, you reduce your risk.)

Just elementary statistics...

Doug
 
My comment at the end of the chart giving the numbers about heading to VT was just to lighten things up. :D
 
I was talking about the probability (risk) of getting lyme if you visit a state:

Est_Probability_of_getting_Lyme=number_of_cases/total_number_of_people

The table in question only gave the number of cases in each state which is insufficient if you wish to estimate your risk of getting lyme if you visit a state.

Doug

I agree that hte table willnot give you a probablity of getting lymes. first the number of cases is not an indication of the risk for this particualr disease becasue there is not a human to human transmission. Risk assesment would need to be based on prevelance of deer ticks (the vector) that carry Borrellia. As well as the number of infected mice and chimpunks and hte number of large mamals, deer, (the reservoirs).

likewise the confrimed cases of easter equine encephalitis in the US is approx 200. but public health initiatives are testing mosquitoes and birds for the virus. [It sounds like fun work. Counting birds in a roost, trapping mosquitoes then running PCRs on the blood in a mosquito to determine who the mosquito has been feeding on and then testing for the virus.] Just elementary epidemiology.

But any excuse to go to Vermont is a good one in my opinion.
 
I just had email from David Hunter, NH Lyme information expert. He said:

"There is a lot of myth and misinformation out there regarding Lyme disease. The absolute minimum length of treatment for Lyme is one month and that is for a new infection. If not a new infection the length of treatment will vary from a few months to perhaps years depending on severity."

Of course there are those professionals who disagree, but that's the reason Lyme disease is so much in the news these days. People are struggling with an undiagnosed illness, struggling for insurance coverage, struggling to be well with a force that is relatively new to the human conundrum. :cool:
 
I have had Lyme disease twice, once in 1990 and another time in 1998-both were separate infections and not part of a chronic resurgence.

Both times I did not have a bullseye rash. Both times I tested negative on the ELISA method;and positive with the Western Blot Method.

The first time I had Lyme I had chronic joint pain that was transient, a knee one day, a wrist the next..and so on. At that point in time, Lyme was still relatively a new thing in Westchester County NY where I lived, so it took a few doctors visits and about 6 months to diagnose.

The second time I had Lyme, I experienced a high fever and extreme exhaustion to the point of not being able to move my limbs or get up -- for those that know me, they will attest that it would take one hell of a punch to do that to me!! My doctor at the time believed that I had mounted an high immune response to the second infection, called a cytokine storm, where the body does all it can to kill the invader.

In both cases I took oral doxycycline for 1 month and as far as I know, I have suffered no long term effects. I have osteo arthritis in my shoulders and neck, plus a family history of Lupus Erythematosis and Rheumatoid Arthritis, so if I do suffer from a chronic Lyme condition, it will be very unlikely to be differentiated from my predisposition to joint deterioration, given my family history.

I did suffer from vertigo and an extremely stiff and painful neck during a bout with viral meningitis in 2000.

Now, my dog on the other hand, has had Lyme Disease twice and Anaplasmosis also twice -- both are tick borne diseases transmitted by the deer tick, and Anaplasmosis is known to cause neurological symptoms in humans and canines. My dog, in fact, experienced a continuous 24 hour long very serious seizure episode called Status Epilepticus and a 106 degree fever during a cytokine storm mounted against Analplasma. She was one of the first cases of Lyme/Anaplasma coinfection in a canine in NY and we are very fortunate to have her with us today -- as our veterinary team said many times, most people wouldn't go through the expense of treating this and due to that, many dogs are destroyed without a clear diagnosis, which in an indirect way deprives veterinarians from gaining the experience in treating these infections from onset to positive cleared outcome. In the two years following her infection, our vet saw many more cases, and had our case history experience to draw upon. As difficult as it was, it was a very informative process for everyone involved. And thankfully, after much rehab, Terra regained all of her muscle inervation and balance and is going strong...knock on wood! :) Her subsequent infections have been treated as acute although she lacked symptoms, and were picked up on annual tick serology panels, which we now make a part of her annual health check.

I am a Medical Technologist and its my field and area of training to perform complex clinical laboratory analyses and present clinical interpretations based on laboratory investigation of the disease process. In my hospital, a teaching hospital in the Greater Boston Area, we have had several cases of Anaplasmosis in humans this year; a departure from the Babesiosis we saw last year. Both are very serious tick borne diseases in which the bacteria take up residence in blood cells (red or white, depending on the disease and species) and are most accurately and most quickly diagnosed upon microsopic examination of peripheral blood smears. Its one of the few times in the laboratory where the technologist is making the definative diagnosis, with the leukemias and multiple myeloma being the other stand out examples. So its an exciting and alarming time for us this season in the laboratory as we continue to see new cases in our area. These other tick borne diseases, in my opinion, are much more serious <than Lyme> because of the damage the body does to its own vascular system as it mounts an immune attack on the bacterial infection. So its my advice, to anyone who feels they may be suffering from a tick borne disease, to seek diagnostic evaluation of all tick borne diseases, not just Lyme...because the vectors of infection are the same tick. In cases of Babesiosis and Anaplasma, we have seen low platelets, anemia, elevated white count and intra erythrocytic inclusions -- we have seen this upon routine microscopic examination of a regular CBC and that's been enough for us to alert the physician and advise that a full parasitic smear be evaluated. We have been on target on several occasions -- score! Meaningful work...:)

In terms of the broadest method for diagnosis of tick borne diseases, for both dogs and humans, a Tick Borne Serology by Flouresent Indirect Antibody methods AKA Tick Panel by FIA; is the best diagnositic tool, as there are several tick born diseases prevalent now in the NE and co-infections with multiple bacterial infections exist. With canines, for acute infections the Snap 4DeX by Idexx is the standard method (in the vet's office), with the C6 antigen being useful in differentiating past exposure/infection from current acute infection (at the reference laboratory), PCR is also available for Anaplasma, but its not a very reliable source for determining clearance post treatment as the bacterial load must be quite high to recover genetic material from the sample. Tick borne serology by FIA is the best method for following the treatment of coinfections.

I hope this helps somewhat -- please feel free to shoot me a pm if you have any questions or just want to talk. Lyme diagnosis is frustrating -- not everyone seroconverts to a degree detectable by current methods which sometimes prolongs the diagnosis.
 
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I have been following this thread with great interest. several weeks ago i began to get lightheaded. It occured mostly from going from a sit to stand position. Several times i almost blacked out. Being a physician assistant i began to try and diagnose myself. Figured less insurance problems if my own doc ordered tests versus myself so off I go to the doc ( which i hate to do). MRI of brain- normal. Echocardiogram - mitral regurg which is not new. i had a negative technitium stress test in the spring. I began to wonder if I had neurogenic syncope. then, last week, i began to have joint pain. Nothing that made me stop activities but enough to be annoying. Shoulders ache, back aches, L thump hurts, r elbow, bilat hips. so, tomorrow I am going for lab work that includes tests for Lymes. I also have Raynauds so I am concerned about lupus, rheumatoid and scleroderma which often occur with raynauds.
 
, PCR is also available for Anaplasma, but its not a very reliable source for determining clearance post treatment as the bacterial load must be quite high to recover genetic material from the sample. Tick borne serology by FIA is the best method for following the treatment of coinfections.

One note in my case. by serum tests for the IgGs came back I had also had fluid drained from knee. This fluid was tested by PCR. Although there is a slim chance of the Borellia DNA being detected they are checking for other infections like staph. A staph infection in a joint could be devastating.
 
I just had email from David Hunter, NH Lyme information expert. He said:

"There is a lot of myth and misinformation out there regarding Lyme disease. The absolute minimum length of treatment for Lyme is one month and that is for a new infection. If not a new infection the length of treatment will vary from a few months to perhaps years depending on severity."

I actually didn't want to comment, but I am a little skeptical, and don't want to diverge away from the actual thread topic. However, a few references have mentioned David Hunter. Can I ask what exactly qualifies someone to be an "expert?" It seems that he knows a lot about Lyme disease and is a great advocate for Lyme education, but does that qualify him as an expert?

The reason I ask is because it is dangerous for someone to make medical decisions and provide advise without evidence or qualifications. And despite the good intentions and all the altruism in the world, it can lead to consequences.

Currently, the evidence points to 2-3 weeks of antibiotics use from numerous studies. These studies looked at both clearance of the bacteria as well as clinical outcome. To say that the "absolute minimum. . . is one month [of therapy]" would mean that everyone who has contracted Lyme disease and received 4 weeks or less of antibiotics would absolutely still have Lyme, which I doubt is the case.

Now, more information is needed for treatment for post-lyme disease syndrome or chronic lyme disease. But, so far, many studies are unable to detect B. burgdorferi in chronic lyme disease, while other studies still point to a persistent infection. Other postulates also include molecular mimicry that causes an autoimmune disease. It is dangerous to say that prolonged antibiotic treatment is the only way if one doesn't understand the science behind it. If it is autoimmune, then antibiotics wouldn't be the correct treatment. Overall, little is known about chronic lyme disease and much much more research needs to be performed on it. That's not to say that science will not get it wrong initially, but the scientific process allows itself to eventually find the truth. However, it is dangerous just to definitively say treat with antibiotics for this length of time without evidence, as antibiotic therapy is not without its own side effects, problems, and contribution to antibiotic resistance.

In summary, I believe Lyme disease is a potentially debilitating disease that can affect the quality of life of people infected by B. burgdorferi. Everyone on this board should see their healthcare provider when in question. But, I believe that healthcare providers are trying to help, and that anecdotal evidence is not enough to guide treatment. And I think threads like this one are great to inform and increase the awareness of the symptoms and dangers of Lyme.

Aviarome
 
I actually didn't want to comment, but I am a little skeptical, and don't want to diverge away from the actual thread topic. However, a few references have mentioned David Hunter. Can I ask what exactly qualifies someone to be an "expert?" It seems that he knows a lot about Lyme disease and is a great advocate for Lyme education, but does that qualify him as an expert?

The reason I ask is because it is dangerous for someone to make medical decisions and provide advise without evidence or qualifications. And despite the good intentions and all the altruism in the world, it can lead to consequences.

Aviarome

I understand what you are saying, and I agree to a point. I've been skeptical of Hunter, too, because I didn't see any professional medical/scientific degrees following his name. On the other hand, he has imersed himself in the study of this topic. While his opinion may be biased, most opinions are also biased. I would not say he is not a knowledgeable resource just because he hasn't had formal medical training. In this case, I think his anecdotal evidence supports having a more balanced outcome in the long run.

My Primary had to say she was unable to help me further but wanted me to continue my search for answers to the symptoms I've been facing for years. I've gone her route, followed the process she was able to provide, and was still in pain with what seems to be obvious Lyme symptoms but without the positive ID she needed to treat. Now I'm following his (Hunter's). While I've just changed PCP to someone Hunter knows as "Lyme Literate", my former PCP wants to be kept in the loop so she can learn. That's good news, too.
 
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I figured I'd offer an update since you all were helpful.

I finally (might) have an answer: ehrlichia. I've been trying to get the results for that test for a couple of weeks, but the receptionist wouldn't give them to me and I finally was able to speak to the doctor today.

He said the results were a little difficult to interpret. Apparently they showed that I have definitely been exposed to ehrlichia, but not in the past three months. The symptoms fit, so he's putting me back on doxy for 3 weeks to see if that wraps things up. My condition definitely improved through the last treatment, but I've still been feeling pretty bad and have missed quite a bit of class this semester. Hopefully this is it, because I'm fairly tried of the headaches and constant soreness/fatigue. And the arms falling asleep--not much fun either.

Who knew ticks could provide so much quality entertainment?

Thanks for the info in this thread. It was helpful.
 
I've been on Doxy now for nearly three weeks and hiked my first hike since the medication has been in my system a while yesterday. I was shocked at how tired I felt while ascending (South Moat).

A friend who was hiking with me and is a doctor advised that I would also be more sensitive to depression so should be aware of that.

Another thing is to stay away from flu shots, even in the scare of H1N1, and that it is "important to build the body's resistance."
 
I've been on Doxy now for nearly three weeks and hiked my first hike since the medication has been in my system a while yesterday. I was shocked at how tired I felt while ascending (South Moat).

A friend who was hiking with me and is a doctor advised that I would also be more sensitive to depression so should be aware of that.

Another thing is to stay away from flu shots, even in the scare of H1N1, and that it is "important to build the body's resistance."

My thoughts and prayers go out to you. It can be a long road back. Just last week I think I finaly got over everything (wrist, shoulders, elbows) from my bought that slammed me in January.
 
What is it about doxy that wipes you out? I'd never been on it before my last course, and I'm really not looking forward to another now. I've been on amoxicillin and other antibiotics in the past without any ill effects, but the doxy was pretty rough.
 
The fatigue I feel since going on Doxy is different than the generalized feeling of fatigue that has been one of my Lyme symptoms (in addition to pain, tingling, numbness that moves around randomly).

It was just really hard to keep going. The sensation is hard to describe, but it wasn't a feeling of muscle aches, rubbery feeling. Nor was my heart pounding hard or my breathing heavy. It wasn't a feeling of being at altitude. My legs didn't feel like they had on lead boots or ankle weights.

I didn't feel this way two weeks ago on a hike up North Kinsman, and I've been hiking regularly "forever." The usual fatigue I feel is a light shield of tiredness that I can't "wake up" from. Not quite drugged, but groggy without feeling refreshed, though I wouldn't be able to take a nap if offered the chance.

The best I can describe it as is feeling that I was my own little world that had a a greater degree of gravity than I'm used to. Shorter step-ups (less effort) on the uphill helped bult without a strong desire to keep going I wouldn't have.
 
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