No one knows anything...

At times I feel the same way and think the same thing. I hope we are wrong and think we need to try and remember that most people who get well no longer frequent the forum. They are hopefully living their lives. To those who are feeling better and still post to reassure and encourage us - THANK YOU!!

Well, there's another perspective on this too.

I suspect I've had Lyme for a very long time.  I really struggled for the last 3 1/2 yrs.  I deteriorated over the last year and finally ended up non-functional and unable to work.  Five months into treatment, I am slowly improving.  But ... if we didn't treat this - isn't there the possiblity that we could actually get worse?.  Maybe some other infection or stress would let the Lyme be more active and we might end up worse that we were. 

None of us really know what the final improvement will be.  But treating Lyme so it doesn't get worse seems like a valid reason to continue treatment.

I got sick in 2002 with Lyme and Ehrlichia, went on heavy abx for 2 years (orals) and felt fantastic - So from 2004-2008 I was fine. I was exercising 5 days a week, lost 40 pounds, felt wonderful. Got rebitten October 2008 - started getting symptoms in January (in spite of doc putting back on orals) - and this time they did CD 57, which in January was a 19, in April a 16. Went on IV Rocephin in Feb but when LLMD saw CD 57 getting lower, she put me on oral doxy along with the Rocephin 3 weeks ago (400 mg daily) - I pray I get better but I feel as you do now - this is different and I don't know why I feel that way. There are no definitive answers. All the good docs can do is try and all we can do is try along with them. It's all a battle. Here I sit awaiting the answer if I got approved from my insurance for another month of IV treatment. I just pray every day for a miracle - that someone knows something and eventually it will be found out and shared with us.

Peace & Hugs,

Laura

There's more to it than just killing spirochetes. There're coinfections to deal with, rebuilding the damage done to the body, rebuilding the immune system, rebuilding a new sense of wellness, etc.

It has been my observation that, of those with long-standing Lyme infections, it is those who persue multiple avenues of treatment who seem to do better than those who only focus on abx alone.

Just my observations...

I feel very comfortable with what Razzle said and can only agree....and encourage you to try what Razzle called the multiple avenues of treatment.

I had some big success with fighting the symptoms with homeopathy and detoxing; it kind of gave my body and soul some space to reorganize; I postponed the question of cure b/c all the med establishment around here is fighting about it. I personally think that we often might not have a very realistic picture of us doing the "curing" - this seems to be such a highly multidimentional biochemical process and we still know so little about our body functions. But nevertheless I see some chances to kind of facilitate, assist maybe even mediate at some point in what we call a healing progress. So abx is only one route or one time- sequence in what we can do. Just my thoughts....

Hang in there!! greetings to you, dorit

Well, we all have to face the fact that some people will succeed at fighting off this nasty bug. But some will never get better. And some will die. Even if everyone is treated in the same way.

This is nothing new for diseases, think of cancer, for example. Even MS, from which some people experience remission for many years, and many do not. Or how about AIDS?

All human bodies are different and so they respond differently. I agree w/ Razzle --- and I think the reason I agree is that multiple avenues of treatment gives us hope that at least one or 2 can make a difference.

Um, not all LLMD's are abx vending machines. I've seen 2 LLMD's and both of them prescribe other things in addition to the abx. And I've seen 3 LLND's (Naturopathic physicians - usually they try to avoid prescription medications) and all 3 of them thought abx needed to be at least part of my treatment program.

Hoping, it is the same for many many illnesses, including cancer. Why don't we have a cure yet?? How about AIDS? There's a heck of a lot of people on all kinds of merry go rounds. Drs flat out don't know. They can't even cure the common cold!

Research on Lyme and the antibiotics and the treatments are SO relatively NEW. I don't have the experience you have at this point, but at this point, I am inclined to believe the LLMDs are prescribing and dosing the abx because this is what they have experienced improvement with. (scuse me, strugglin w/ a little brain fog here....)

Well, I guess we all need to be writing our congress people begging for more research and attention (lotta good that will do..... ) We've gotta make this known! We've gotta get our Drs to ALL report ALL our cases to the CDC.

One possible thing that may help is pushing our insurance companies. Some folks on here can probably sue them. More people need to do that. I believe they can win if they have MDs behind them.

I'm just starting out. I'm going to question Quest's protocol and cc my insurance. My PCP has given me a referral to a LLMD who does not take insurance. I will see him in 2 weeks. He will provide me w/ the paperwork to file w/ insurance, he believes I will be reimbursed when I file. That is one step. His nurse said that he will do labwork and prescribe treatment that will be covered by my insurance, so that will be another step. Whatever his treatment is, I can research. And if I believe it is dangerous or questionable, I will write and write and write. And I will ask my insurance for answers, and I will tell them that they HAVE to find answers.

This is every bit as big as cancer and AIDS. The epidemic is growing, a lot of people becoming disabled (eventually the gov't will realize THAT), and people are dying. Children are crippled and physically disabled. The more we scream, the more attention this travesty will receive attention.

Before I got ill, I was a breed specific legislation fighter (dogs). Did a lot of research. Lead 3 protest marches, spoke before hearings, and wrote about a thousand letters. I speak it wherever whenever I can. If those who are fighting can keep up w/ the fear mongers and bigots, one day we will catch up because our mouths are so big and because we are right.

With what we pay out in insurance, no one should have to be paying out of pocket w/ no coverage. This is criminal. Unfortunately, the only thing that might help is that money talks. If insurance cos are saddled w/ all this coverage, they will push for better tests, research and treatment. That may be the ONLY thing to kick them, other Drs and researchers in the rear. And finally, hopefully fresh new researchers will see the $$ signs and jump in there (if we don't go universal in the meantime).

Hoping, I've probably read your story, along w/ many others, so I don't remember your details. If you will point me to the original thread, I would like to read it.

btw, the LLMD I have found used to work w/ the huge Family Practice office of my PCP. My PCP says that some family members became ill w/ lyme. So he left FP and went to work w/ Dr R, (KC area) about whom there are posts on here. She is reknowned, at least around here. On those posts, people complained about the expenses -- folks are shelling out thousands of $$ per WEEK. With her office, he was working too many hours and charging too much money, so he left to devote the rest of his life to Lyme. I am told by his nurse and my PCP that he is passionate about Lyme, because it is personal.

I don't know the whole story, because he only sees patients once per week. I think he does research and is semi-retired. My first consultation for one hour will cost $160. After that, visits are $80. I can't do that, but if insurance will pay all but my co-pay, then I can try. Maybe I'll end up w/ a good referral to share, we will see.

Dear RD,

You're so very brave.

Question: We're people with aids denied health insurance claims back in the early days?

hopingToFindCure said...
Dear RD,

You're so very brave.

Question: We're people with aids denied health insurance claims back in the early days?

I don't think their medical claims were denied as much as these people were dying and it seemed to be a specific group (gay men).  I do know from my own experience in insurance that insurance policies for single men were denied a lot and/or they were required to take a full medical exam before the policy would be issued.

With LD, even though people do die of LD, it is not the "norm".  Our problem is being long-term chronically ill, too sick to protest and fight.... too sick to do laundry or a sink of dishes... in too much pain to drive or walk or DECIPHER MEDICAL CLAIM REJECTION NOTICES.

Hoping, so what was the disease??