I believe more than not, most of us come here for support and uplifting. Not just for some "medical advice", of which none of us claim to have a PHD in med, except Dr. Ted, and maybe a couple of others.

Anyhow, I could not help but reply to this. It was killing me.

Amanda

into your post by hitting that ENTER key, TWICE, every now and again...like in paragraphs.

quote:

---

Originally posted by adrenalinchick97:
I have been using this site for a week now. I have met some great people and I am thankful for it.

I am sorry to say but I am really starting to get disappointed. I have been reading up a lot on LYME and all the test and treatments available today. I talked to different doctors and they all have opinions on the treatments. Then I come to this site and hell breaks loose.

It seems to me that everyone is being treated individually. I think it is nice to share what kind of symptoms you are having and treatments you are on but when someone is telling me what stage of lyme I am and how I should be treated it is definitely not appropriate.

If anything I believe it is really messing up new diagnosed patients. I think only me and my doctor will know how long of a treatments I should have. She listens to me and is willing to work with my symptoms.

Just because I have been bit three years ago it doesn't mean I am in a late stage. I have been totally healthy until 5 weeks ago. Also I have talked to so many doctors last week and my PCP was the most educated on the disease.

I am not going to sit and wait for 3 weeks so I can see a specialist and pay out of pocket when he is going to do same treatment or similar. I think everyone is different and needs a different treatment. Just because you are taking Doxy it doesn't mean that someone else should be taking that as well. There are findings that you should not be on the IV for more then 4 weeks but people are on it for 10 or more or that the bacteria can form cysts.

If there was a set way on treating LYME everyone would be on the same meds. Even doctors don't know yet what is the best treatment but I have noticed that some people on this site do. All I am saying is it that your input on the disease, how you are treated and your recovery is greatly appreciated but I think a lot of you are also trying to play a doctor.

At this point I am better off staying away from this site. Don't bother replying because I won't be reading it. I don't mean to offend anyone this is just my own personal opinion.

---

Ouch, that hurts...sorry that you feel that way, for this board has helped thousands. But, we can't please every body every time.

My daughter, above, lookin4answers and her two daughters, and me, too, were all put on different protocols at our last visit with our LLMD, which was their first visit.

If you feel as if we are telling you that there is a certain treatment you MUST be on, then I believe that you have surely misread into what was said.

As for you having been bit, and infected 3 years ago and if you were not treated at that time, then, yes, it is fair game to say that you are in the more advanced stages of LD...facts are facts.

The fact, too, that you have only recently (5 weeks ago) started having Lyme symptoms, can mean that your own immune system was doing good work and now has decided that it needs help in order to continue for you to feel good.

As I said, we can't please everyone, every time. I wish you well, for leave this unchecked and untreated, you will surely need it!!!

Remember experience is a great teacher, and many people here have more experience and knowledge of this disease than most doctors in this country. My PCP tells me all the time that he knows that I know more about LD than he does.

Why? Because I've studied it 1,000 times more than his little paragraph about it that he got in Med School.

Rosemary
 

My guess is that you will most likely change your mind over time and be knocking on a lyme specialist door.

My hope is that your primary doc will be able to help you get your health back.

I didn't read all of your post. But, I think it is great you have a primary doc who has the goal of getting your health back too.

This seems to be the exception instead of the rule.

It also seems that you are doing research. This is good. Keep it up.

I found the hearing in CA very informative and helpful.

If you are interested go to:

1. [URL=http://www.calchannel.com www.calchannel.com[/URL] (I think..if you have a problem let me know)

2. Click on webcast

3. Type in Feb in the archives

4. Scroll down to FEb. 25, Health and Safety

5. Click on watch

6. There is a 9 min. lead in but you can move the bar

Although this hearing is in CA, I feel it could be in almost any state.

[This message has been edited by kam (edited 18 September 2004).]
 

The people voluntarily share their experience and self-gained knowledge in hope of sparing others the unnecessary pain of this disease.

It has given me the ability to make informed decisions rather than relying solely on one opinion of a MD who may or may not be well versed in this disease.

I'm more comfortable knowing all sides of an issue before making a decision as important as treatment for my 2 1/2 year old.

Have I made the right decision? Only time will tell, but I'm comfortable that I've at least made an informed one rather than blindly accepting answers from one source.

I applaud those of you willing to share and I ask that you continue for you have helped out in more ways than you will probably ever know.

Anyway, I wish you luck and please check in in a year's time to let us know how you are doing.

Please take all sides into serious consideration. Some of us (read me) stuck with doctors for way too long because they were *so nice* and *seemed* to really know what they were talking about.

DLL
 

It is a shame....

This sounds more like a Lyme Rage than anything to me.

Poor sufferer...

Too BAd,

Another one lost to the "official" view.

Trout
 

Lyme is a very complex illness.
Most of us have had the experience of trusting a dr who really did not understand the disease, & the vast majority don't.
The result is a much more difficult period of treatment!! ...to put it politely.

We try so hard to help new patients, or suspected patients, avoid the complications we have wrestled with - sometimes for years.

I am not a doctor, but I have had to learn about Lyme. Because of that knowledge, my father & I were diagnosed & recently my grandson was diagnosed.

My father was mis-diagnosed with Alzheimer's, a Lyme Literate Med Dr (LLMD)
in New Jersey diagnosed Lyme & started treatment.
Because of so many problems when we got back to South Carolina, treatment was stopped after 6 weeks & he died of complications of Lyme disease 3 yrs later.

There are very few real LLMDs available, so most of us have had to travel to get the care we needed. Grandson is now being treated by a Lyme Pediatrician in CT.

I hope that your PCP is familiar with the info on the ILADS website. www.ilads.org International Lyme & Associated Diseases Society
Especially the following:

1) "ILADS Lyme Disease Treatment Guidelines Summary" - facts that everyone should study.

2) under Articles & Presentations, Dr Burrascano's "Diagnostic Hints & Treatment Guidelines..."
I recommend you print a copy - 32 pages of excellent info.

Compare your treatment protocol to Dr B's guidelines.
page 16-18: Antibiotics - recommended dose & length of treatment.

He is one of the best of the best LLMDs & has learned from treating thousands of Lyme patients.

If your PCP does not agree with Dr B's Guidelines, be aware of the following:

A short term of antibiotics or a dose that is not strong enough will frequently seem to "cure" the disease, but if treatment is not adequate, the bacteria that survive will go into hiding. At some opportune time in the future, they will become active again.

Very similar to the Chicken Pox virus going dormant & later causing shingles.

When treatment is not adequate, people develop more symptoms later & their health goes into a downward spiral. When that happens, the dr, who "cured" them of Lyme disease, will usually mis-diagnose an illness that Lyme mimics, like CFS, Lupus, MS, ALS, etc, etc.

It is a much more difficult illness to control if that happens.
If you are early in the disease, then I hope that you will be sure to get a strong enough dose of antibiotics for a long enough time.

LLMDs are also aware that the situation is frequently complicated by co-infections (like Babesiosis, Ehrlichiosis, & Bartonella). Symptoms overlap with those of LD, but different meds are needed for each illness.

I owe my life to the people here on LymeNet. Because they shared info, I found I had Babesiosis & Bartonella along with LD.

Again, I'm sorry you have been disappointed with the people here. They really are a very caring group.

I hope you will reconsider & continue to read. For reliable info:
"Links for new LymeNet members" at http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

To understand the different sides in the Lyme controversy, read "Camp A & Camp B" at http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Just be sure you make the right decisions. Your future health will depend on it.
 

I was a VERY active, athletic, outgoing, and overall SUPER healthy person.....at least that's what I thought (Infected as young child)....

Until I crashed due to stress and insecticide over spray!

So, please take heart...we actually do understand your views here..and as rosie said...we can come acrossed as overbearing...but we ALWAYS have your interest at heart.

As to yuor Doctor being so knowledgeable..I was recently told by my local MD that I was SO much MORE informed than anyone at the hospital/clinic I go to...that they ALL read my chart AND the handouts I give him by mail.......

Good Luck,

Hope you come back...healthy and prove us wrong.

Trout
 

... and I realize that I may get flamed for this, but here it goes...

When I recommend LymeNet to someone who is searching for answers, I always add the following caveat:

"Be aware that most of the people that post on LymeNet are Lyme Patients. It's kind of like sitting in the doctor's waiting room and comparing notes with the other patients who are there waiting. Except, you will find that many lyme patients have REALLY done their homework."

I have found SO much valuable information here that has helped me to seek proper treatment. But I've also learned that I need to take what I glean from here as suggestions that I need to look into further.

Still, I have gotten some advice (or read advice given to others) that is quite definitive and well, final sounding. The scary part is, I've read some advice and info that's been given that conflicts with what I've read other places here or elsewhere or have been told by my doctor.

This practice of patients giving medical advice is dangerous, especially for newer lyme patients, as they are still sorting through the heaps of information about lyme itself, and about the political battle surrounding lyme and why they can't just go to a local doctor. Newbies may take any advice and info given as gospel... and what if the advice is not 100% correct?

I often wonder if people who do give medical advice or make medical statements about treatment guidelines, ever wonder what would happen if the advice the were giving or the statements they were making were wrong? I know that most of the info given here is usually correct and what may not be correct is pretty innocuous in the short term... but just think about it, you may be interpreting what you've learned in the wrong way and then passing it on incorrectly... just maybe.

I have NO problem with those of us who give advice, adding a statement something LIKE "I'm not a medical professional and I am speaking only from my own experience."

I agree with what another poster here said about most of us coming here for support. I personally come here to bounce ideas off y'all and just see what you think and get suggestions.

So, I guess my point in posting here is that in my opinion, the original poster really has a point. Not about the not-going-to-a-specialists part... but the rest of it? definitely food for thought for all of us for sure.

And I don't think it's just what we say, because believe me... I KNOW that a lot of us have a LOT of good info to give! Like I said, I've gotten a lot a lot a lot of good info and advice from amoungst our ranks.

No.. I don't think it's just what we say, it's also how we say it that matters.

Sometimes, when a newbie posts their thoughts and questions, they get bombarded by info and maybe even told quite directly that their doc is a ***** (insert degrading word of choice ) who doesn't know what he/she's talking about. This can be really offputting to someone who has a doc that they trust and has just come to look up some info. Hence, the reaction of the original poster here.

(And, you never know, the GP may honestly be just treating incorrectly because he/she doesn't know any better, but may be willing to learn. You really never know.)

Ok, so I'm rambling. I hope my point is well taken. I'm not meaning to accuse anyone of doing anything awful.

I just want y'all to think about it.

This is all just MHO, of course.
You know I love you guys, right?

Pea

[This message has been edited by GreanPea (edited 18 September 2004).]
 

I've never had one of you come over to my house and force me to call a LLMD and force Bicillin in my butt...so to speak.

But you're all welcome to stop by if you want.

I went to a Mexican food restaurant one time that I didn't like, but I didn't call, yell at them and tell them why. I just stopped going.

I love people who rip you a new one and kick you in the gut and then say, "I don't mean to offend anyone." I guess it's a free pass or something.

I remember the last time I wrote, "Don't bother responding." I couldn't wait for them to respond.

Adrenalinchick I don't mean to offend you but....na, I better not.
I love all you guys...and girls. You saved my life

[This message has been edited by Lenny777 (edited 18 September 2004).]
 

------------------
oops!
Lymetutu

 

Now I'm just sleepy.
 

"Just because I have been bit three years ago it doesn't mean I am in a late stage."

If there is any medical information out there to document this fact.. I would LOVE to see it.

"Then I come to this site and hell breaks loose. It seems to me that everyone is being treated individually."

Exactly... and that is how it should be... right? I agree.

Every PCP should be knowledgable about coinfections.

If you REALLY want to know how smart your PCP is..

Just ask this one simple question...

How do you treat the cyst form of Lyme disease?

If you have done all the reading you referred to... you should know the answer.

But normally doctors who don't know Lyme will squirm and avoid the question because they don't know. If they don't know... shame on them.

"I think only me and my doctor will know how long of a treatments I should have."

That is fine IF your doctor knows Lyme and all of the co-infections that may be involved... yes.

If not... might as well be going to a shoe salesman... a candle stick maker.. or a sail boat captain for help with your most precious posession... your health.

"She listens to me and is willing to work with my symptoms."

I truely hope this isn't the beginning of a life long relationship. Treating "symptoms" can make a doctor and patient best friends for YEARS to come... and make the patient MUCH lighter in the wallet.

However..

Treating the CAUSE of the symptoms will shorten the dependency on another person and give a patient their life back.

"Also I have talked to so many doctors last week and my PCP was the most educated on the disease."

That could be true. Most doctors .. especially in Florida where you live.. are idiots when it comes to Lyme and coinfections.

I personally know of 3 deaths in FLorida from improperly treated tick borne diseases. TOO MANY!

"I am not going to sit and wait for 3 weeks so I can see a specialist and pay out of pocket when he is going to do same treatment or similar."

Absolutely there is NO way a PCP could even carry a LLMD's socks.. but until you experience this for yourself.. you won't know. And you pay for what you get.

Insurance companies don't always have the patients best interests in mind.. so beware.

"I think everyone is different and needs a different treatment."

Exactly!!! And everyone deserves the right to have the best help possible.

Prepare for the worst though with a PCP.. and we will all hope for the best for you.

If you ever change your mind.. it's ok. Many folks here have followed the advise of a PCP.. and have come here for addiotional help after they have been slammed and disabled... and are too sick to function... and the PCP has given up on them.

I wish you well. I appreciate the fact you want to "do it yourself". I just hope you can handle the consequences.

look at http://flash.lymenet.org/ubb/Forum1/HTML/027904.html ("I am sorry" post)
before any more flaming....
 

Tincup speaks from experience and truth. She will be there for this person every step of the way, if need be. We all will.

She has the person's best interests in mind, believe me. I've known Tinny for 4 LONG years.[ ]

Welcome back, adrenalinchick!

------------------
oops!
Lymetutu

 

PLUS she appears to be quite sick just starting treatment, they don't need to get upset with this sort of stuff. People should remember how THEY felt when they where really sick prior to any treatment.

And yes reading the various comments from the respondants does look like flameing.... I can see why, given the initial post but if you read the retraction, those who posted in response may feel bad at what they wrote without knowing about the second post.
 

I'll bump it back to the top so you will see it.

http://flash.lymenet.org/ubb/Forum1/HTML/027904.html
 

Welcome! Wishing you the best with whatever treatment you choose.

Sue

[This message has been edited by Sue vG (edited 19 September 2004).]