Lyme Disease Support Group

Hi Everyone,

I feel really confused. I have gotten so much different info. Most folks on this site say that to fully treat Lymes you need 2-3 months of an antibx. I am looking into finding a Lyme specialist, but a family friend who is an Infectiouse Disease doctor wrote me this in an email when I asked him about treatments:

"If you already took 3 weeks of the right antibiotic (doxycycline), there is no other treatment of any kind that will benefit you and I would not recommend further treatment of lyme. There is evidence that further antibiotics and other treatments are NOT helpful for proven cases of lyme disease. sometimes it just takes time to get energy back, etc. The most important thing that a physician can do is make sure there is nothing else wrong (so a good general internist can do that)."

I know people on this site are very supportive of LLMDs but it is tough when you get conflicting views. Just thought I would bring it up. Thoughts?

I'm skeptical of LLMDs and their methods, particularly the use of supplements...it's just not my way. However, I've been on doxy for 3.5 weeks and still feel like death warmed over, so that alone is enough for me to disregard the ID doctor's views. The ID doctor that I went to told me 2 weeks of doxy would be enough, since I "obviously" didn't have lyme!

I must say I go to an infectious disease doc and honestly don't feel that either if docs or LLMDs in general are bad or good just individual docs like in any specialty.

That being said I do think it's a good idea (from personal experience) to be checked out and make sure that there isn't anything else going on. Besides my infectious disease doc I still see my pdoc, a neurologist, and a gyno (I found out just before my lyme diagnosis that I have pretty severe PCOS). I can say from experience that just the 2-3 weeks of doxy didn't help me and I really don't think that oral antibiotics in general ever helped me. It does depend on individuals though.

Jess

juliet,

ID docs dont believe in chronic lyme and they believe that 3 weeks of doxy is all anyone needs. Tomorrow the IDSA is being investigated and their review of the 2006 guidelines are in question. The IDSA has been found to have a bias and that they needed to allow our LLMD as say in this. The IDSA has always discounted our scientific evidence.

Their motives have always been about money not our health. Listen in tomorrow. A live stream will be on the IDSA website. (As per CT attorney general Blumenthal) See for yourself. Everyone needs to advocate for their own health. Read, research and take your own health into your hands.

I'm sorry Carol but I have to argue some with your last statement. I have personally seen LLMD that are just as driven by making money and just as many ID docs that are good at treating Lyme. I'm seeing the bias against infectious disease docs is as bad now as people are saying it is against LLMDs. I see an infectious disease doc who has been treating me since last September and during the time he has been treating me I have been on iv abx for 7 months. He's even put in an iv infusion clinic in his office for his Lyme patients and attends every conference on Lyme disease he can and every time has brought back new information to me. This is with four LLMDs who blatantly refused to treat me even with a CDC positive result on western blot.

So while I'm not denying that the IDSA has major problems I ask that you please do not lump all id docs into that group because they do not all belong there.

Your right there are some good and bad drs on both sides. I apologize if I offended you. However what I think you need to do is look at the society as a whole and see that they control how your treatment goes, they control how your insurance pays or doesnt pay.They are the reason alot of people are undiagnosed, undertreated and some remain sick. I object to this. If I have a doctor who believes that the best course of treatment for me is out side of the norm, I dont want that Society to dictate my treatment and thats what the IDSA is doing by having such narrow minded guidelines. They for some reason have that same power over treatments around the world. Europe holds to their guidelines. Do some research. You will find that they have twisted their data to suit their needs.

My daughter was to an ID doc and he was on the same page as most LLMD's so Im not lumping them all, however most have this attitude and its a dangerous one. No one Society should have the power to dictate my course of treatment.

This is why there is a hearing in Washington tomorrow.I have read the letters that the Society has sent to Senators and to fellow members of their Society. They leave no room for argument. Its their way or no way. I guess they are afraid to eat crow.

I commend your doctor for going against what his own medical society preaches. Im sure Christine and Jaime would be happy to add him to the list of good docs.

PS The bias is about the guidelines not so much the doctors.

this is a touchy subject. IN general ID docs don't get chronic lyme ... hence why there are SO MANY of us STILL Sick after 10 plus years! YES there are LLMD's that are in it for the money, but most of them are in it to really help us ... many of them do not take ins. because , for instance, a top lyme doc used to take ins. his recovery rate was upwards over 90%! which is unheard of in lymeland, the ins. companies sued him, so now he relocated does NOT take ins, and continues on with getting people WELL.

so many of us have been jerked around by doc after doc, getting bs dx of fibro, lupus, and one of 300 other medical conditions that have ALL been linked backed to LYME.

anyone can follow any docs "protocol" that they want, we're just here because we've "been" there, we've researched THOUSANDS of hours, we have talked to literally THOUSANDS of people... and we have seen people who have seen those ID docs who say 2 weeks of doxy is a CURE, and they end up right back here or on one of many other sites looking for answers. I've seen it time and time again. if taking long term abx makes someone feel better, i don't see a problem with it. but they want to claim that bacteria gets resistant to it, etc, etc..fine, then take olive leaf extract, or garlic, or samento, or one of the many natural antibiotics that are out there...

read thru our fact section, i'm sure that will clear up a LOT of your questions

warmest regards

jaime

Post edited by: jaime1978, at: 07/29/2009 04:23 PM

I am going to go on a hunch and could be wrong...but will say this anyway...Have you read Cure Unknown?

If so, then you would understand what the debate is about. Many (not all) ID docs subscribe to the IDSA mentality. And that is a mentality that has caused thousands to suffer needlessly. For what purpose?

Many conditions and syndromes didnt exist until the Lyme epidemic started to spread...and once a LARGE portion of our most debilitating symptoms were thrown out of the Lyme circle - because it just didnt fit in with how it should be when it comes to bacterial infections...

As far as supplements - understand that our bodies are organic - from the earth - and there are plenty of naturally occurring things in existence that have the ability to heal our bodies...many have had to go outside the narrow scope of medicine - something man-made, which possesses the arrogance of man - that he has conquered nature - in order to find a way of getting better...

Good and bad occur everywhere...that is just the nature of man...

But what is happening with this disease...the crimes that are committed against us simply because we are sick...How many times have you been told that you are having psychological problems...and that you want to be sick? I had enough of that when I was a teen...I wanted my life...I wanted my athletic career...because I could have been GREAT...

But because of the mentality of those in the IDSA- I lost that...I could not get better - and when I found my LLMD's It was years of struggling with abx after abx, cocktail after cocktail...

And it wasnt until I began feeding my body the way it was designed to be fed that I got somewhere significant...and some of these doctors picked up on that kind of thing...thus supplements entered the fray...strengthen the immune system to help it (along with abx or naturals) fight this disease.

So I rejoined the fight - digging back into research, learning all that was out there...and it is horrifying...

The crap - and I mean utter CRAP that Juliet has been told by that ID doc is what will keep her sick and suffering should she listen...and she DESERVES better then that. And that is worth fighting for.

The power of the mind can be something quite remarkable - but when you have a disease that infects that mind - and does such horrid things to it - its power wanes...

Lyme does not just go away...it waits quietly sometimes, and then can tear you apart...

Please, read the research done by those who wanted to honestly get to the very bottom of this epidemic. You should be enraged...and feel violated...because you have been...

Your basic rights as human beings are being sacrificed...so others can make a buck and remain in power.

Again - yes there are good and bad on both sides of this...there are other doc's not LLMD's who are willing to treat - some under the guise of other things (chronic fatigue, fibro - both of which it seems were spawned from Lyme most likely)...

But you have to understand that most of us - those who have been through the ringer time and time again, have a natural distrust of doctors - ID docs being at the top of the lists...

They write us off - and would rather have us suffer as they find NOTHING as the cause of our pain and suffering...and send us packing...when if they just looked at the facts available from others outside the precious IDSA - they would see things as plain as day...

Sorry to go off on a rant...but what Juiliet was told really TICKS me off...Yes, it is ALWAYS good to rule things out...but to be so dismissive about Lyme could be condemning her to a life of pain, suffering and misery...

Juliet - you deserve better then that - you deserve to have everything in life that you want...should you have Lyme, and it be permitted to persist within you, things have the potential to become so much worse...

Please go forward with getting with an LLMD - and taking the right steps for caring for your body properly - so it can better heal you...

Christine

Juliet,

I would definitely seek the opinion of a reputable LLMD. I would not go on the advice of the ID Doc. even if he is a family friend. Like the others have stated, most ID docs adhere to IDSA guidelines. Meanwhile, Lyme-sick individuals are misdiagnosed. It is your body and your health, it is worth a second opinion. All the best.

Heather

Thanks everyone. I just saw my GP and she told me if the Amoxicillin doesn't work this time, she will help me fight this aggressively. Our next step will be an IV drip. She actually told me that she treats about 5 Lymes patients a day (I live in MD) so I don't feel the need to go to an LLMD JUST yet, but I certainly heaven forbid I need to.

HOpe everyone feels okay today!