Vector Borne Diseases - Lyme, Bartonells, Babesia, RMSF, etc

[Bow Only]

If any of you have any questions about these or other diseases, I'll answer to the best of my ability.

The first thing to know is that the current guidelines for treating Lyme Disease was formed in 2006 by the IDSA (Infectious Disease Society of America.) These guidelines were adopted as the correct procedure for treating and curing Lyme Disease. They have been proven inaccurate and the political lobby from the major insurance companies has allowed these guidelines to remain in place. The CDC knows it and will not adopt any amended guidelines.

The second important fact to know is that the tests for these diseases are only 50% accurate at best. In the South, the false negative rate is much higher due to the Southern variant of the bacteria doesn't illicit antibodies on either test used. There are several new tests that can be helpful, but unless you see a LLMD (Lyme Literate Medical Doctor) your physician won't do the tests.

To learn about these diseases, go to www.ilads.org Educate yourself, don't rely on your physician.

 

[Gadget]

The second important fact to know is that the tests for these diseases are only 50% accurate at best. In the South, the false negative rate is much higher due to the Southern variant of the bacteria doesn't illicit antibodies on either test used. There are several new tests that can be helpful, but unless you see a LLMD (Lyme Literate Medical Doctor) your physician won't do the tests.

I basically self diagnosed, did a lot of research and everything matched up. Went to my family practitioner and asked to be tested; first test came back negative. After reading a lot about the inaccuracy of the testing I went back to my Doc and told him about my research; asked for prescription of Docxy, he gave it to me and drew blood for different kind of test that he said was more accurate, it came back positive for both RMSF and Lyme.

Matt did you get Bell's Palsy? That was one of the worst things for me, couldn't drive a car for about a month. I had it bad; lost all taste, hot was cold, cold was hot, lost most of my eye sight, lost all smell, right side of my face was totally paralyzed, had to wear an eye patch because eye wouldn't blink, had to hold my mouth around a straw to drink, couldn't talk properly, took 6 months to get over. I've never been the same since, some of my nerve damage was permanent. Caused several other problems too.

 

[Bow Only]

I basically self diagnosed, did a lot of research and everything matched up. Went to my family practitioner and asked to be tested; first test came back negative. After reading a lot about the inaccuracy of the testing I went back to my Doc and told him about my research; I asked for a 90 prescription of Docxy, he gave it to me and drew blood for different kind of test that he said was more accurate, it came back positive for both RMSF and Lyme.

Matt did you get Bell's Palsy? That was one of the worst things for me, couldn't drive a car for about a month.

Bell's Palsy doesn't usually occur unless you've had the disease for quite some time. I was treated pretty quickly for my Lyme both times. I had a lot of problems though. I don't know how I would have made it if it weren't for the treatment. I was pretty messed up.

The smell cessation, taste alterations, and ear ringing are common symptoms.

 

[Gadget]

unfortunately mine I believe went untreated for quite some time.

 

[alligood729]

Matt, in the other thread, I posted about the pile of seed ticks that I got into. Also like I said, it's been 2 weeks with no ill effects at all. Should I have shown some symptoms by this time? Or, are seed ticks not as likely to be a carrier of disease?
Thanks for taking the time to answer these questions....

 

[Rip Steele]

I'm out of work now due to lyme they think

 

[Bow Only]

Matt, in the other thread, I posted about the pile of seed ticks that I got into. Also like I said, it's been 2 weeks with no ill effects at all. Should I have shown some symptoms by this time? Or, are seed ticks not as likely to be a carrier of disease?
Thanks for taking the time to answer these questions....

You should be fine. It is highly unlikely that they are a vector for these diseases.

If you did get sick, it would be similar to getting a severe cold or the flu. Chills, fever, body aches, things like that.

 

[308 WIN]

What are the noticeable and un-noticeable differences between seed ticks and ticks that are a danger? A tick has always just been a tick to me. Thanks.

 

[Rob]

Great thread - I had a good friend with bells palsy and the doc eventually determined it was Lyme disease.

 

[alligood729]

What are the noticeable and un-noticeable differences between seed ticks and ticks that are a danger? A tick has always just been a tick to me. Thanks.

Seed ticks are TINY!!!! They are tiny black spots, pinhead size or smaller. If you ever get into a mess of them, you will know it. They latch on to you the same way a deer tick does, but I can't emphasize how small they are. When you try to brush them off like they are just pieces of dirt or dust, and they don't move.......look close!

 

[Bow Only]

What are the noticeable and un-noticeable differences between seed ticks and ticks that are a danger? A tick has always just been a tick to me. Thanks.

A seed tick is just the larval stage for the tick, basically an immature tick. In order for them to be vectors for disease, they have to bite a rodent, bird, deer, etc that is a vector for borrelia burgdorferi and obtain the bacteria. Seed ticks are so young, they haven't had a blood meal and don't contain harmful bacteria. When you get a lot of them at once, you should be OK. When you get only one, you have a greater chance of disease transmission.

 

[spoonman-]

I have read up on Lyme-disease carrying ticks and one fact that struck me was that even if you are bitten by an infected adult tick, if you can remove it properly and then get a good shower within 24 hours you are highly unlikely to contract the disease.

http://ento.psu.edu/extension/urban/lyme-disease

I can also tell you this from the experiences of several people I know personally: Florida is CRAWLING with Lyme disease infected ticks, despite what the "official" CDC maps that show where Lyme is prevalent and where it isnt. One recent study estimated that only about 1 out of 10 cases is being reported, so the numbers are a lot higher that the CDC reports. Georgia is right next to Florida...

The good news: once you get home, get nekkid, look in the mirror. Get rid of any ones you see (bellybutton, lower back and under your booty are common places for them to hide). Get in the shower and that should do the trick. I always save the ones I do find, in a jar of rubbing alcohol, just in case I do get a rash or weird symptoms, the tick can be tested and you can get the right treatments early.

Probably Too much info but Lyme is so preventable, I'd hate to see anyone else get it.

 

[jbird1]

I basically self diagnosed, did a lot of research and everything matched up. Went to my family practitioner and asked to be tested; first test came back negative. After reading a lot about the inaccuracy of the testing I went back to my Doc and told him about my research; asked for prescription of Docxy, he gave it to me and drew blood for different kind of test that he said was more accurate, it came back positive for both RMSF and Lyme.

Matt did you get Bell's Palsy? That was one of the worst things for me, couldn't drive a car for about a month. I had it bad; lost all taste, hot was cold, cold was hot, lost most of my eye sight, lost all smell, right side of my face was totally paralyzed, had to wear an eye patch because eye wouldn't blink, had to hold my mouth around a straw to drink, couldn't talk properly, took 6 months to get over. I've never been the same since, some of my nerve damage was permanent. Caused several other problems too.

Gadget,

Any chance you remember the name of the more accurate test?

 

[Gadget]

Gadget,

Any chance you remember the name of the more accurate test?

I don't remember the name, but I do remember that they said this particular test couldn't tell if the infection was currently active. What it did was test if I had the antibodies in my blood which told whether I had been exposed to the virus in the past. Evidently once you have it the antibodies stay in your system for some time.

One question that comes to mind, which Matt may be able to answer, is once you have the antibodies and have had the infection previously does that mean you now have built up a resistance towards getting infections in the future ??

 

[Gadget]

pulled this up on Google. I don't know which test they did on me first, maybe it was the "Blot Test" they talk about below, but like Matt said I've read it can by highly inaccurate.

Lyme disease antibody tests are used to help diagnose Lyme disease.

How the Test is Performed

A blood sample is needed. For information on how this is done.
A laboratory specialist will look for Lyme disease antibodies in the blood sample using the test. If the ELISA test is positive, it must be confirmed with the Western blot test.

Why the Test is Performed

The test is performed to help confirm the diagnosis of Lyme disease.
Normal Results

A negative test result is normal. This means none or few antibodies to Lyme disease were seen in your blood sample. If the ELISA test is negative, usually no other testing is needed.
Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.
The examples above show the common measurements for results for these tests. Some laboratories use different measurements or may test different specimens.
What Abnormal Results Mean

A positive ELISA result is abnormal. This means antibodies were seen in your blood sample. However, this does not confirm a diagnosis of Lyme disease. A positive ELISA result must be followed up with a Western blot test. Only a positive Western blot test can confirm the diagnosis of Lyme disease.
For many people, the ELISA test remains positive even after they have been treated for Lyme disease and no longer have symptoms.
A positive ELISA may also occur with certain diseases, such as rheumatoid arthritis.

 

[Gadget]

Here's some more info for the CDC

Laboratory Testing

Laboratory testing can be an important aid in the diagnosis of Lyme disease. Proper use and interpretation of laboratory tests requires an understanding of the type of test, the stage of illness, and the underlying likelihood that the patient has the disease.
Like blood tests for many other infectious diseases, the test for Lyme disease measures antibodies made by white blood cells in response to infection. It can take several weeks after infection for the body to produce sufficient antibodies to be detected. Therefore, patients tested during the first few weeks of illness will often test negative. In contrast, patients who have had Lyme disease for longer than 4-6 weeks, especially those with later stages of illness involving the brain or the joints, will almost always test positive. A patient who has been ill for months or years and has a negative test almost certainly does not have Lyme disease as the cause of their symptoms.
Because all laboratory tests can sometimes give falsely positive results, it is important when faced with a positive result to consider the underlying likelihood that a patient has the disease. If a patient has not been in an area where Lyme disease is common or their symptoms are atypical, positive results are more likely to be false positives. Similarly, if a patient is tested numerous times and only rarely tests positive, it is likely that the positive result is a false positive.
Several laboratories offer "in-house" testing for Lyme disease using their own assays or testing criteria. Such in-house assays do not require evaluation or approval by the Food and Drug Administration. Because of the potential for misleading results, CDC and FDA recommend against using in-house assays whose accuracy and clinical usefulness have not been adequately validated and published in the peer-reviewed scientific literature. Ask your care provider about the validation of the tests being used.

 

[Bow Only]

Rick, we should not rely on the CDC for information on Lyme disease or testing for it. They have been proven incorrect and refuse to modify their guidelines. I'll post more tonight when I'm not on my phone.

 

[Gadget]

Rick, we should not rely on the CDC for information on Lyme disease or testing for it. They have been proven incorrect and refuse to modify their guidelines. I'll post more tonight when I'm not on my phone.

I could see why the ELISA test would not be good for people with recent infections based on the info above, but it seems to have worked in my favor, particularly because my infection had gone for some time.

 

[Bow Only]

I could see why the ELISA test would not be good for people with recent infections based on the info above, but it seems to have worked in my favor, particularly because my infection had gone for some time.

It's still too unreliable. The people that show up positive can get treatment but that treatment is often inadequate because of the guidelines. The people that are negative are told they don't have and can't have Lyme Disease. They end up with Fibromyalgia and a lot of other issues.

Tests for Lyme:
Western Blot - False negative approximately 50% of the time. It was never intended to be used as a Lyme test.

ELISA - even less accurate for the Southern variants of Borrelia infections

CD57 - This test isn't a Lyme Test, but patients that have Lyme Disease almost always have a depressed CD57 count. It's something to read about to discuss with your physician if you are not currently going to a Lyme Literate
Physician

ISpotLyme - A new test less than a month old that uses T-cells to determine if Borrelia is present. It's supposed to be more accurate but I haven't heard much feedback on it. It's another one to read up on.

There are PCR, FISH assays, and other tests used to determine if Borrelia is present. None are great, but a knowledgeable physician can diagnose you clinically without a test. The problem is most physicians aren't knowledgeable about Lyme or it's co-infections. They aren't taught about it in school and what is taught isn't correct.

 

[Bow Only]

A couple examples of the problems facing the treatment of Lyme and it's co-infections.

In order to treat a medical condition, there must be literature to support the treatment. Without proper literature, the physicians can be cited for treating outside the guidelines for proper medical treatment. Just Google Dr. Joseph Jemsek to get an example of what the medical boards will do.

Here is the kicker, the drug companies rule the medical journals and won't let any pertinent literature get published. To get published, you must have all your ducks in a row and be able to prove your claims. This has been done numerous times and the medical journals still will not publish the literature. Their reasoning...................too much public outcry. For examples, Google Dr Stephen Fry and Protomyxzoa Rheumatica or look up Dr Alan Macdonald on Youtube. Both of these brilliant physicians have ground breaking information that should have been published and adopted but were refused publication. It is appalling that our government allows this to happen and we the people must continue to suffer.