Clearly 1 dose is not enough!

I have been spending much time reading this forum and it's clear that while not only this disease is not diagnosed properly and doctors are not catching on but the most common point made is that the one high dose of doxycycline is not enough for initial treatment. How do we spread the word about these things? How do we educate the public and doctors on how to treat lyme?

It's doubtful anything will happen until the CDC drastically changes their guidelines about what counts as an adequate test for lyme and where it can be found. Once they implement changes, I would think doctors would start changing their practices. Until then, you have to either find a doctor who listens and respects what their patients have to say or find an LLMD. Doctors tend to have a god complex so until the people above them change (the CDC), don't expect doctors to take a rational point of view on lyme.

Many areas have their own local support groups - what I call face-to-face groups - but there are still lots of areas without information about these infections. My whole state is in denial, so I'm going to start an information/support group. I'm in one of the smaller local towns, so there's lots of room to expand and educate - and a long uphill battle I'm sure, but it's not going to stop me.

The major Lyme organizations have other out reaches and things that you can do to help educate those around you as well. This has to be a grassroots type of movement. Others are already taking the CDC and IDSA 'by the horns' and really aren't doing so well - so we need to tackle this in a different way. It's part of why I'm still here on this forum - continuing to help and spread the word.

Chapelle ~
What is being talked about is a single large dose of Doxy, not the kind of doses you are taking. Some docs believe that one single, large dose will stop the bacteria in it's tracks - others doc's don't believe this, so we still have more controversy.

Those are all great ideas, but unfortunately, most doc's choose to remain ignorant and out of the controversy. When I had just failed abx therapy for these infections, I couldn't find even one doctor, Nurse Practitioner, or anyone else that would accept me as a patient - even though I made it abundantly clear that I was NOT seeking treatment for my infections. They have a hands off policy here when it comes to a patient with tick-borne infections. If one should happen to slip by and get in, then they are told all the usual lies about it being stress, anxiety, wait 2 weeks and it'll go away and all of that.

This is why I say, we need a grass roots type of education. It's the people being infected that are going to care enough to force change, but we need larger numbers. Unfortunately, the longer we wait, the more numbers we will have.

Chapelle said...
there is no reason why we can't make the general public aware and the PCPs aware of all of this despite what the CDC says - but HOW? I have been thinking the same thing.......

demolition - what is your opinion as to why doxy isn't enough? I started on doxy alone and still am only on doxy but I am on other nutritionals and herbals too (teasel root which also fights off lyme)

I am going to my LLMD this coming week. I think she was hoping the doxy would be enough bc I am earlier than most (started treating after having lyme for only 4 months), BUT I don't think it will be, bc although I have made tremendous progress, I still am not where I was expecting to be. Would appreciate your input, thanks.

I don't dispute doxy is a good med to treat Lyme disease what I'm pointing out is that the majority of stories that I have read about people being under treated for Lyme disease including my own is that the doctor prescribes one high dose of doxy and tells the patient it will kill the Lyme. Months and sometimes years go by and the patients symptoms return in a later stage of the disease and it is harder to treat. I feel this is the main important education we need to expose.

Chapelle said...
demolition - I am so sorry I misinterpreted what you wrote - you clearly wrote one dose, and it kind of went over my head - I actually can't believe some Drs think that!!!

I agree with the undertreatment, I've been reading tons on here too, and I am trying to make sure that I am on the right road myself. the general situation is so terrible. what exactly happened with you? is that what your dr did initially?

awe, traveler - that is just so wrong! the truth hurts so much sometimes. You are so right in that we need more people, but the longer we wait, the more we will have. Its all just so disturbing, and sad.

Yes my doctor prescribed me one dose of doxy and almost two years later the disease hit me like a ton of bricks. I thought I was literally going to die until I got back on antibiotics.

I was one of those who took the preventive 1 time dose and to screwed big time! Not Only that I think you end up having the strongest strains survive and end up having a severe case of Lyme, forget getting a positive test for Lyme after that! That definitely needs to be spread to Drs. That more harm is done than good. If I had gotten the full 3-4 week treatment then, I wouldn't be here two years later covered in pain. So frustrating! If you need me to be on board for anything, I'm here!

Chapelle... I keep thinking about you because I went on Doxy jut 3 months after finding the tick and Doxy didn't do it. Even though while I was on Doxy, most of my symptoms went away very quickly making me think I was better and cured only for symptoms to come back within days when I stopped taking it after 2 months. I'm praying your response will be different though!

Hmmm, interesting! I wonder how much time passed before a positive result came up....

I really wish you to beat it with all that you're doing! You're definitely ahead of the game with everything that you're doing. I pray that will be enough! Everyone's situation is different and there are different strains of Lyme, mine might be a stronger strain. Plus I think I have coinfections with the Lyme which might be the reason I'm not getting better. Hopefully, all you have is a weak strain of Lyme and nothing else and everything you're taking and doing will kill it off. I would hate to see another person go through what I'm going through. So glad you're being so proactive with your fight! I added Grapefruit Extract and Japanese Knotweed (Resveratrol) recently which causes herxing, so it must be helping. Will add Prima Una de Gato (cat's Claw) next. I took it before and got a lot of herxing. You might want to research those supplements and see if you might want to add any of them to what you're already taking. I'm so looking forward to hearing from you in a few months that you're all better!! Keep that strong, positive attitude!