Living with Lyme: a phenomenally complex disease

I wish that don't nobody got this disease. It ain't good. It ain't right, I tell ya. Good folks shouldn't gotta suffer on account a dis filthy, no good little hound of hell.

I hope I ain't got outa line here. I don't mean no harm to nobody. I'm just sick of seein' good folks all messed up over dis.

If it is genetics that determines long term illness with this bacteria- Is there studies being done to connect the dots? I have had doctors tell me that my immune system was compromised prior to getting this disease. I find this hard to fathom. Prior to being bitten, I was very healthy full of energy and never got sick. What about all the children that get this disease. It does not distinguish between ages.

Its so sad that the INFECTIOUS DISEASE SPECIALISTS pretend that lyme disease doews not exist...........I just wish ALL OF THEM could have this disease so THEY can be told ITS ALL IN YOUR HEAD........and you are whining. Im so sick of dealing with the DOCTORS regarding this disease. WAKE UP .....it DOES exist and its HORRIBLE to live with . i would not wish this disesase on ANYONE but the INFECTIOUS DISEASE SPECIALISTS who claim it does not exist.

What do you do as a patient when a neurologist from a large city tests you and says the Lyme is in your brain...and we have proof. Then your own city infectious disease specialist negates the results? I do not know what to do. I only know that I am sick and need help. I am told to see a 2nd neurologist (locally) and am told it is NOT Lyme. I am scared. Camp A and Camp B MUST get together and help us!

I got ill 15 years ago and was told that it was all in my head to see a phyciatrist. I read about the symtems of lymes in the paper. I called Dr. Pretorious in Ukiah .He put me on a strong antibiotic for a month. I am better,,but I know that there are people out there that the Dr's won't treat. When will the medical field catch on to this horrible decease.

Thank you to the editor for allowing these great, educational articles written by Dr. Jon Sterngold to be published by your newspaper! It is very much appreciated.

Jon gave you another accurate insite to what it is like to have Lyme and co-infection diseases he mentioned above. COMPLEX describes us to a T. Nothing is simple about these diseases.

Other areas that Jon didn't touch on, or perhaps my 40 yr. neuro lyme mind overlooked them, are extreme sensitivities to:

lights, glare, and reflection is like looking directly at the sun for me;

noise/sounds ... is like a base drum at FULL volume and I hear a pin drop too.

chemical smells ... perfume, cologne, aftershave, hairspray, office/cleaning products that smell, cigarettes & especially on a smoker's clothing that we can NOT be around whatsoever, diesel fumes, and some foods.

Again, thanks to the newspaper and to Jon for writing about Lyme and co-infections from his personal and medical experiences.:) hugs

A lot of it has to to do with low blood circulation. Get them to exercise about 1- 1 1/2 hours a day and their symptoms will go down!

Daniela, I wish that were true! My version of lyme does not include weakness or fatigue, so I've been able to exercise quite a lot. I've been in athletic condition all my adult life. None of this has made any difference, in my case anyway. Whether I run a few miles or take it easy has had no effect on my primary symptoms, which are mostly brain and heart stuff. Lord knows I've tried....

Betty - yes, and as I said in one of the articles, I HAD to keep them short to 'fit to print'. I also have intense chemical and sound sensitivities, though not light. I don't think one had to have Lyme per se to have chemical sensitivites (mine are airway inflammation and general revulsion), but the inner ear symptoms - tinnitus and hyperacusis - were tightly correlated with the onset of other Lyme symptoms, long before I knew what I had.

char - I knew Jim! Used to work with him some at the Ukiah clinic when I had a side practice doing orthopedics. If you got well on a month's worth of antibiotics, you're way ahead of the game. Stay vigilant....

Co-cats and sick-of-lyme - I'm afraid I'm pretty fatalistic about our plight for now. Until a big lawsuit or law change alters the way lyme medicine is practiced, we're on our own, unless we happen to luck out with a LLMD. I know some folks who read the ilads protocols and just order meds offshore. But yeah, the issue makes my blood boil. It's an old human state of affairs- power without wisdom. The story of our species, no?

dot - the docs who tell you your immune system was compromised prior to getting sick are just guessing. I'd just view it as more bs. Many doctors invoke guesses and bs in an effort to make sense of what otherwise cannot be fully understood with the current state of knowledge. It's a basic human tendency that comes from our nature as a story telling species. We're hardwired to do it. And it ends up being bs most of the time until we realize that this is what we do. Also, patients generally want these stories, or any explanation, so they can find some comfort in the chaos of their condition. One feeds upon the other. You know?

jon

Thank you for speaking out.

Quoting you: "We simply cannot "rule out" an infection with a negative test. Physicians who believe otherwise are wrong, if not downright negligent."
.
That sentence is perfect and so true and much needed.
.
They narrowed the disease definition of Lyme to profit off the sick and dying. BigInsurance denies it.
.
Many already know about "The 2nd National Conference on Lyme Disease" held in Dearborn Michigan and the FDA's meeting before that in 1994.
.
The criteria was narrowed down so bad almost no one tests positive and this was approved by the likes of Dr. Arthur Weinstein, who has tons of conflicts of interests, and Barb Johnson of the CDC, she holds patients together Smithkline on test kits.
.
Please go and view the presentation at:
.
http://www.lymecryme.com
.
Empower yourself....Empower others....
.
P.s. not to mention "lyme disease" is a clinical diagnosis.

I wrote a long reply last evening and see that it's lost in space.:-((

testing 1 2 3....

Also, I don't live in Oakland..... blog weirdness...

Thank you so much for this article. I am writing a research paper on Lyme disease for my microbiology class. I have been researching for a while now, and it is getting so confusing. It seems many sites contridict each other. I also did not realize the pain so many people are suffering. I have a family member who has this disease and am horrified to learn what he has been going through and what he could be facing in the future. I am almost finished with my paper, but have a presentation to give next week. Are there any sites you would recomend? I would like to give an educated up to date presentation and do my part to spread the word as to how this disease affects people. I

Oriana, email me - jon AT lifepathguide DOT com

www.ilads.org is a big site with lots of info. But I'll try to talk with you.

jon

Why has this item been deleted and also not available via archive?

I found this one, but not the 4 others.
http://www.willitsnews.com/rds_search/ci_1376...

I'll get them all up on my website this week, hopefully.

jon