So sorry to hear about the loss of your father. That's very sad. I'm sure it was unexpected, as well. (All the more hard to deal with)
You have been through so much.
I know you don't feel up to it right now, but someday when you're all better & you will get better --------you should write your story.
Try to get it published in a newspaper or magazine. You have an especially interesting story to tell because it did make the European Journal. Just an idea......,
Also, you can eventually make your own web page and tell your story. The only folks who acknowledge us are other patients.
The internet is very powerful.
Docs hate our insant access to the same journals they read and because patients can talk to each other-------comparing notes.
They hate "internet medicine."
There is such a hidden dirty secret to medicine in America. It seems to stay well-suppressed, too.
The only other way they listen is with a lawsuit.
If you go the legal route, I'm sure you know you have a 2 year statute of limitations to file suit. Then you have to prove permanent damages.
(My sister is a degreed para-legal who worked for a prominent Ft. Worth medical malpractice lawyer for years. He only takes the HUGE cases. He would refer smaller cases to other lawyers.)
Well, I'm amazed you're still functional. You certainly don't need LD on top of all this.
But you should be proud of yourself for persisting in getting treatment & building yourself back up. That takes a lot of discipline & perseverance.
Most folks don't have that kind of tenacity to get through all that.
I've heard alot about prolotherapy. Sorry yours did not work for you. Sounds very painful. I don't know how you could stand more pain like that.
You've been through so much already, I just don't want you to get your hopes up and expect perfection from your next doctors.
It's true, you have to try & stay positive, but I do hate to see you subject yourself to anyone else who won't take you seriously.
Maybe they can help you. Everyone has to treat Lyme in their own way.
I saw close to 50 doctors. When I begin to suspect chronic LD, I went to all the specialists------- neurologist for MRI, & Rheumatologist for an evaluation; Infectious Disease Doc------on & on.
This was covered by my insurance.
But by the time I went to the Rheumatologist, I knew he would just find the secondary damage caused by Lyme. He said I didn't have Lyme because a funky lab said I was negative.
He just said I had a very mild case of reactive arthritis. He did not care what was triggering the reaction.
He yelled at my husband when he asked the Rheumi, "Where can I take her for help with her head & neck pain?
He told us-----"She's just seen the Doctor."
We left & that guy was glad to see us go.
Things only started to get fixed when I finally found an LLMD in Houston. (He's now closed his practice to do further Lyme research.) He also had Lyme.
Actually, what I'm trying to say is------- (and this viewpoint is only in retrospect after about 18 months of treatment) try very hard not to expect perfection from these doctors.
Your new doctors have no real clue or understanding of everything you've been through.
I'm sure they wouldn't take the time to even read your story on this board. Too busy.
Your paying for their opinion. Just take the help they give you & go.
Try not to get upset or disappointed------if you have to leave without all the answers.
Did I get upset & disappointed? Absolutely.
I'm just trying to save you some additional hassle. No one told me. I figure this out the hard way.
Sometimes you have to lower your expectations or it will drive you insane.
It will make you crazy for your symptoms to be continually dismissed as nothing. And, that's exactly what they do.
When things started floundering for me & Doctors were unable to get to the root cause of my problems, I eventually made my way to an LLMD.
Even when you finally get in to see a LLMD, they are overworked. Many of them have LD, so they push themselves to help others.
They each have their own pet treatment protocols based on the results of working with many Lyme patients. Sometimes these ar based on the geographical locations throughout the country.
Some kinds of Co-infections are more prevalent than in other parts of the country.
Overall, LD & co-infections of all types are pervasive in the US.
Generally speaking, most folks get the level of care that they can afford.
If you read "CAAT's" story here on Lymenet, well, let's just say it's another eye-popper.
You'll have to scroll down to her response.
http://flash.lymenet.org/ubb/Forum1/HTML/028133.html
Anyway, we have to protect their identify because of persecution by New York State or any state for that matter.
The standard of care is to treat LD for 4 weeks and then you're cured. Period. End of story. This is false.
It's my understanding that even John Hopkins has refused to see Lyme patients.
You can read more about this in the Camp A and Camp B links provided by Treepatrol. This Board is camp B.
Well, I hope your brother is better. Sounds like he hit the BUMPY LYME ROAD, too. They should have made a clinical diagnosis on him & disregarded the test.
I can think of a couple of nutritional supplements that might some, but there's really no way of knowing what would help you.
What works for some, doesn't work in everyone.
I've done extensive reading in nutrition. I usually just give unsolicited advice, but you've had such extensive surgery & treatments-------you might be inclined to laugh or be offended.
Anyway, if any of us can help, let us know.
Sorry,------ can't resist telling you that sulfur in the form of N-acetyl cysteine, an amino acid might help you some:
It can help with bronchitis by thinning mucous. (Docs prescribe it in aerosol form I think.) You can purchase capsules in a health food store.
I use Country Life Brand. It says BIOCHEM on the label ---NAC or N-Acetyl Cysteine in capsule form. Twinlab brand is good.
To activate amino acids: Take on empty stomach or at least no meat/milk protein with a little Vit. C & B6.
I use 1 - 2 package of Emergence Vit C you purchase in a a little box. Just mix in some water. Drink fairly quickly. The Vit C will evaporate out, if you let it sit there too long.
You'd need to take that at least 2 or more hours away from your antibiotics (ABX). It will cancel out your ABX.
The sulfur is like onions & garlic. It is not related to sulfa drugs.
Sulfur will rebuild tissues in the body. It will make your tissues & framework stronger.
Anyway, I'm rambling now. So take care.
Jan
P.S. The extra white spaces are for those with poor eyesight. Some won't read your post if it's too condensed. Sorry, but the Board can get kind of persnickety about most anything. Welcome to our world.
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