Diseases - IlCat.org

Rachel Said:

Lyme Disease not recognized as a disease?

We Answered:

Dekayel's answer lists some excellent sources for information.

My experience has made me realize that there is a serious disconnect between the CDC's view of Lyme disease and the real-life experience that many patients have with the illness. As a result, there is tremendous conflict about the true nature of Lyme disease. For example, criteria developed by the CDC for reporting purposes are used by many doctors as a bottom-line tool for diagnosis. However, the criteria were never meant to be used that way: not every case of Lyme disease meets the reporting criteria. But the CDC has made little effort to set doctors straight about this, and many cases slip through the cracks.

I don't know why that hospital refused to test your friend, but there is much confusion and controversy about testing. While lab tests may help support a clinical evaluation for Lyme, existing tests for Lyme are far from perfect. So doctors should not assume that negative tests mean the patient cannot have Lyme. Yet many doctors view lab tests administered in accordance with CDC reporting criteria as infallible. In addition, those criteria call for "two-tiered testing," starting with the less reliable (and less expensive) test called ELISA, then advancing to the somewhat more reliable (and more expensive) Western Blot test, only if the ELISA is positive. Certainly, many health care providers have gotten flack from patients about their testing policies, and what your friend experienced may have been one hospital's dysfunctional response to that.

The controversy goes on (and on, and on, and on) from there. The CDC and other authorities tend to hold the opinion that there is no such thing as "chronic" Lyme. This may lead doctors to believe that someone like your father-in-law should have recovered from Lyme even without any treatment. At the very least, many doctors believe that Lyme cannot persist after the patient HAS had antibiotic treatment. So, even with clear evidence that some patients are still sick or have relapsed after treatment, doctors cling to what they've been told by the "experts" and refuse further treatment.

In order to get treated by what is known as a "Lyme literate doctor" or LLMD, many patients DO have to travel long distances. LLMD's are so rare, that a patient may choose to see a doctor who is not otherwise a great fit for them. We learn to be grateful for any doctor who is free-thinking enough to see through the sociopolitical fog.

Eleanor Said:

What do you think of the CDC report on the health risks of climate change?

We Answered:

well at last the u.s. gov. is waking up to this. our environment agency already has various contingency plans in place, as disease rips north across continents. our latest is bluetongue in cattle; the midges that carry it used not to be able to get up here, and not overwinter if they did. the e.a. are expecting it to be endemic within the decade. i'm expecting a return of malaria, we used to have it in the fens in (you guessed it) the medieval warm period. it was called 'ague'.

and we had our first sighting of a tiger stripe mosquito year before last - only 50 miles from me shudder.

oh, and lymes disease, that is spreading like mad here. my mate had a bite on her leg, looked like nothing, till it hit the nerves in her groin, then agony! antibiotics see it off if you are quick otherwise it does permanent nerve damage. Watch Out for The Deer Ticks People!!!!

heat/cold deaths? our gov. have researched that as well;

With winters becoming milder, there are likely to be up to 20,000 fewer cold-related deaths. However, there is a danger that bacteria would no longer die-off seasonally during the prolonged cold spell meaning that diseases may spread more widely.

More heat waves will increase the number of hot-weather related deaths by up to 2,800. Exposure to higher levels of UV light could cause an extra 5,000 deaths a year from skin cancer and may cause an increase of up to 2,000 cases of cataracts. Warmer summers may cause up to 10,000 extra cases of food poisoning each year.

http://www.bbc.co.uk/climate/impact/huma…

it must be time for your pills 'doctor'......

Joann Said:

lyme disease quacks?

We Answered:

You pose a good arguement. I suppose they do it just to cover their butts.

Randy Said:

Florida dog owners - Lyme vaccination?

We Answered:

I live in a Lyme disease endemic area, so my dog gets tested annually, and has been negative. She does get the Lyme vaccine, and is on Frontline + year-round. Even in my area, my vets don't feel the Lyme vx is a core vaccine, but take each dog on an individual basis as far as risk factors.
You can email the Florida Veterinary Medical Association, and see what they recommend:

http://www.fvma.com/

This fact sheet suggests that there are different risks in FL due to prevalence of other types of ticks rather than the deer tick (Ixodes scapularis), which is the most common carrier of Lyme disease. In that case the Lyme vx would not be of much protection for your dog.

http://edis.ifas.ufl.edu/ig088#FOOTNOTE_…

Ricardo Said:

Are those cdc numbers wrong because I know at least 3 people who got lyme disease?

We Answered:

Did all 3 people get it the same year in the same place? I belive the CDC says that it based on a year for a area or state. I know many people with it, but they all got it different years and at different places. You can call them and ask them about it. But the CDC is a very ligitamite place, and would not post false informaiton.

Kristen Said:

Looking for others who are living with Lyme Disease - how did you get a diagnosis?

We Answered:

I wish I could help. I've been suffering for more than 10 years. I went through similar bunk diagnoses as you...depression, stress, thyroid, tested twice for MS, all in my head, etc...I was even told I had cancer. Finally diagnosed as a text-book case of "Fibromyalgia with still undiagnosed accompanying condition". No joke, that's what's in my medical file. It seems many of my additional problems cannot be accredited to FMS, that's why they keep retesting me for MS.

Finally, upon a recent followup visit to the Neurologist, she took a test for Lyme, something no one had done before (despite that I've been in areas where it's widespread several times, and had requested a test for it more than once over the years...I was always told it wasn't necessary). Well, it turned up positive! Now they don't know if I've FMS, Lyme, a mix of the two, or if they are both one in the same.

Disease control insists I must have another test done by their lab to confirm since they've no confirmed cases in my town yet and the law requires all positive lab tests to be retested. All fine and dandy but they say I must go to their lab...over an hour away! Why they can't just retest me with a different local lab makes no sense to me The lady on the phone from Disease Control gave me the same nonsense as you're getting...not a "real" disease. Well if it's not a "real" disease, then why does the law require me to go over an hour away for their private lab to retest me to confirm? And how is it that their lab always comes up with negatives on previously positive results? Not one confirmed case in one of the most heavily populated cities in the States...a city whose population consists heavily of tranplants from the northern states (where Lyme is prevelant). Something fishy indeed.

Sigh....I don't know...I just don't know. I wish I could help in some way but our situations, while similar, are also drastically different. So what works for me may not work for you. However, the best move I made was to finally stop fighting the losing battle, it only made me more ill. I'm stuck with this and nothing will rid me of it at this point...my life will forever be different. Well, by following lifestyle changes recommended in FMS self help books, I have improved. Well, actually, I haven't "improved" but I have learned how to deal with many of the symptoms in a way that allows me to be able to do what's important for my family. I've learned what my limits are and and how to function within those limits...at least, most of the time.

George Said:

Lyme Disease Treatment & Monitoring?

We Answered:

I can tell you first-hand, because I had it...but it was caught early...antibiotics is the first line of treatment, the earlier it is caught the better. I had two weeks of heavy-duty antibiotics, the first week in hospital by I-V.

If they caught it in you early, the Lyme won't initially show up in your blood, but the doctor will draw blood anyway to check for Lyme titers,...but once you have it in your system, it stays there, even after you are healed.