Community Chat

[madzonie]

I love Kris.  

[Mominohio]

I saw this yesterday, as had very mixed emotions about it.

First, they say it is Lyme Disease that has actually been the problem, and now that he is receiving treatment for that he is a whole new person, and almost back to himself.

Misdiagnosis in this nation is a much bigger problem than many realize. It frustrates me because I think that often the goal of the medical profession is to call it something and begin a treatment regimen, with not much regard when those treatments don't work. I think a lot of times, no one is looking outside the box, or considering all options.

I'm happy for him and his family that he is improving so much, but very sad that all these last few years have been lost medicating for something that wasn't his problem, and having such poor quality life.

We live in an amazing time, medically speaking, but it is far from perfect, and it is things like this that give validity to those who don't trust the system, and take everything they are told from that system, with a grain of salt, and a second and third opinion.

[gabstoomuch]

Lyme is such a controversial condition, and it is very often overlooked. It causes an incredible amount of symptoms, many of which mimic so many other conditions.

It is at epidemic level now in the US, and treatment for it is very hard to find. The CDC does not help any by saying it is not real, although recently they seem to be coming around. There is lots of research going on, but Lyme can have up to 300 different bacteria infesting all sorts of organs in your body, including your brain. They are almost impossible to find, because they form a biofilm over themselves, so the body's autuimmune system does not even kick on to kill  the bacteria because it doesn't recognize it as "an enemy in the body". It "shrink wraps" itself, remaining hidden, but muliplying rapidly.

Once it gets to the chronic state, it can wreak havoc in your body. I know someone who was diagnosed with MS, and was being treated for that. She kept getting worse and worse until a friend asked her if she had been tested for Lyme. She had not. Bingo! She lit up like a Christmas tree for bands of the different bacteria.

Unfortunately, insurance companies will not pay for more than 4 weeks of treatment. Most people do not find out they have it until it reaches the chronic stage, and at that point it takes a year or more (if you are lucky enough to find a Dr who knows how to treat it) to get it under control. ANY hope of recovery takes cash out of pocket to a Lyme-literate Dr. (and there are not many).

I believe the Kris K story. Avril Lavigne went through something similar. She was so bad she was bedridden for almost a year before she found help. Yolanda Foster is another. She is very sick, yet people say terrible things about her.

Just terrible. Healthcare in this country has such a hard time thinking outside the box. If it is not an organ they can "fix", or a rash they can throw cream on, they just do not look further. 

It can live in your body for years, even decades. Most people have no recall of ever getting bit by a tick. Less than 50% ever get a "bullseye" rash. I very high percentage of people test negative because the standard test is not sensitive enough.

There is only one lab in Palo Alto (Igenix) that actually tests for all the bacteria they know about so far. (there could be more bacteria that have not been identified yet).

I have always wondered what connection there is between Alzheimer's and Lyme.

[SilleeMee]

@gabstoomuch,

Another thing, too, is the concern for blood transfusion infections. Traditional methods of testing does not guarantee bug-free blood supply.  I'm a retired lab tech and the CDC was always sending our lab and others the latest news about infectious diseases. One of things I distinctly remember was the concern over insect vectors like ticks and mosquitos. Malaria is another one that's hard to kill once it progresses beyond a certain point. 

Tetracycline is has been the antibio of choice for lymes. But it can only do so much. 

[wildcat fan]

I've enjoyed many of KK's work in film and music--especially his collaboration with The Highwaymen.  Good to know he's found an accurate diagnosis and is on the mend.

[LilacTree]

I've mentioned this before on this BB in Wellness, but not recently, and perhaps before they changed the BB when many of my posts were deleted.  My daughter has had Chronic Lyme Disease (it is not correct to call it "lyme's," there is no "s") . . . for well over three or four years.  At first we thought it was mercury poisoning. 

She has lost her entire personality, she spends days in bed and sleeps during the day while up all night, she had to quit her job because of her physical exhaustion and mental stress, she cannot get disability because no one believes Chronic Lyme Disease exists.  I've talked to my own doctors about it and they "roll their eyes."

She finally found a doctor who treats Lyme, and she has been on a panoply of treatments, mostly antibiotic combinations and has been tested for all of the accompanying conditions, for which she tests positive on two (babesiosis and another I can never remember how to spell).  No treatment works for very long.  In fact I can't even say they work.

She believes it is mostly in her brain, but CT scans do not show either encephalitis or meningitis.  There are so many things she has lost the ability to do, she forgets constantly, she is irritable and even nasty, when she used to be my sweetest girl.  She doesn't seem to be getting better.  She goes into what's called "herxing" when on new medications, which causes physical pain for weeks.  She has aged considerably.  She is on a special diet which is very expensive and difficult to prepare.

Everything thing else she has been tested for is negative.  She doesn't remember ever being bitten by a tick except perhaps years ago when she was a teenager.  However, it did not make her ill at the time.  The doctor has told her (and we have read) that once it's in the body it can linger for many years with no symptoms and then suddenly attack.  She has made little progress and believes she won't live through her fifties.

The most horrible thing about it is the mockery by "real" doctors and most of the medical profession who think she's a hypochondriac who just doesn't want to work.  Ridiculous, since she has worked all of her life since she was a teenager still in school.  Plus she loved her work and misses it.

I could go on and on.  She won't even discuss it anymore, and she has other major problems in her life that she is ill suited to handle.  She won't discuss them either.  She is so different from the cute, funny young woman with so much  joy in life, her children, and so many friends.  Her friends haven't deserted her, but she can't see them often.  Her "good" times only last a day or two.

All of the Lyme issues (including this last one about Kris K) come through my FB newsfeed, and she and I have researched and printed out boxes full of information about this disease.  We are hopeful that the CDC will finally legitimize this disease so she can at least get disability.  We have little hope.

[RetRN]

I hope Kris continues to do well, I always thought he was amazing and felt bad that things didn't work out with him and Rita Coolidge.

[ROMARY]

Reminds me of an incident years ago, when in the ER, accompanying a senior having confusion, etc.  Anyway, the very smart ER doc said that being confused, etc. could be a symptom of a slight common UTI (urinary tract infection), which he had even seen in fifty year old women (and probably men, too).  Turned out to be true.   Also, from what I've heard, seniors (and probably all ages, I don't know though) being dehydrated is another cause.   (p.s. Regardless, those ER doctors are brilliant.  They probably have sharp memory recall,  because they remember what works, what doesn't, and they instantly recall previous patients and their symptoms, etc.,  and their results.)    Wishing Kris K.  the very best recovery.