Comments on Renee's Reflections: Partners in Lyme: Forward......March!

Thanks Sue for your encouragement...we just can't ...

2009-11-12T16:33:13.861-06:00

Thanks Sue for your encouragement...we just can't look too far ahead when fighting this stuff!

Hi Renee K I have not found Boric Acid yet...still...

2009-11-12T16:31:58.076-06:00

Hi Renee K
I have not found Boric Acid yet...still looking! I am going to call my LLMD and ask...I liked the article you mentioned...tough to hear some of it though.

Hey, Thanks Jo!!

2009-11-12T16:30:16.671-06:00

Hey, Thanks Jo!!

Hi Joanne I am so sorry you are strugglign with yo...

2009-11-12T07:50:51.824-06:00

Hi Joanne
I am so sorry you are strugglign with your GP and getting what you need. Sounds like you are in need of a new protocol for killing off these beasties. It is great though that you are able to keep them at bay enough to feel as good as you do while on the abx.
No problem with sharing here, that is what we are all about isn't it?
It is so frustrating with how the medical communities are ignoring the facts on chronic Lyme.

Hi Kara You have been on my mind lately too. We a...

2009-11-12T07:47:52.702-06:00

Hi Kara
You have been on my mind lately too. We are going to go very slow with the new protocol as we are not willing to damage our eyes to do the one med! I would love to hear what your LLMD gleaned from the conference too, Kara. Gentle hugs and prayers~

Wow, that sounds like a really long day for you bo...

2009-11-11T18:40:23.713-06:00

Wow, that sounds like a really long day for you both.

I know you're not thrilled with all the meds, but there's no way out but through, right? I do understand how rough the herxes are. I've been on doxy now for 15 months. Each time I went off (twice), my symptoms returned within days and then I had to go through the 2-month herx all over again. So, I'm reluctant to go off again too early! I also REALLY understand the $$ side of it, too.

Rest up from your trip, and good luck with the new treatments!

Sue

Renee We all want this to be over "yesterday" but...

2009-11-11T17:36:38.224-06:00

Renee

We all want this to be over "yesterday" but it is not to be. Every one of us is different and what works for one does not work for another. I just posted an interesting article from a physician affected by this disease that puts it together in a brief but thourough way.

More than half the battle is finding a provider willing to work with you and it sounds like you have done that.

Where can you find the boric acid? I wanted to try that with my last yeast infection but went to the drugstores around here and no one had it, they only had the stuff to treat ants!

Go Lymies, go!

2009-11-11T11:40:44.463-06:00

Go Lymies, go!

Renee Thank you for such an informative post whic...

2009-11-11T11:12:30.799-06:00

Renee
Thank you for such an informative post which has helped me a little. It is very interesting to hear your LLMD say about pulsing 1 month on and one month off antibiotics in late stages of treating Lyme.

I hit up against problems with my GP she has been so supportive until now but recently there was a letter from Chief Medical Officer to all our doctors saying not to treat on long term antibiotics. Blah Blah, it certainly does not stand up scientifically what he is saying nor does CMO want to listen to reason.

So GP is reluctant to treat beyond a month further. I decided to stop now thus leaving a month in hand for contingencies.

1 week without antibiotics and there is no denying symptoms are deteriorating although not as quickly or as much as when I have tried to reduce before.

I know Pam Weintraube talks about cycling on/off antibiotics something Burrascano also did. So I had reasoned that at least if I go back on in time I might kill some more Lyme.

I know I should go see LLMD and will but guess I need to wait until symptoms are visibly worse before doing so.( for them to see)

Such a predicament like Russian Roulete. How ill will I have to be before I get treated again? How long do I wait and decline before I seek help?

I was just getting my life back and could cycle again only a short distance but hey compared with years of not being able to walk upstairs it was great.

I know LLMD did say my symptoms would more or less definitely return when I stopped antibiotics and to go back if I got into difficulties and yes I will but at what point?

I would hope to stick things out for a month at least maybe get another test done, I am due to visit my elderly father in a couple of weeks it will be grim travelling if things get worse.

Sorry just off loading shouldn't really do that to you, just didn't feel ready to talk on the Lyme forum I used for now.

Don't need to reply just idle thoughts and commiserations to you this evil illness and those evil people pulling strings (In UK our 2 main lyme doctors have been reported to GMC for unorthodox treatment, so things here are becoming as bad as in USA)

I wish IDSA would get on publishing their findings but then I am not confident they will be unbiased so they could make things even worse.

Anyway as you so rightly say carry on the battle at least I can still e mail newspapers and MP's and pass information on to GP one day that information will be read by someone who can and will help bring this controversy out into the open.
My biggest concern is for the children those who are often the sickest and who have the greatest difficulty getting treatment.

Was thinking about you this morning and wondering ...

2009-11-11T10:32:55.929-06:00

Was thinking about you this morning and wondering how things went on Monday. So, perfect timing on your update! Hope all goes well for you and Joel on the new protocol with an end result of SUCCESS. We see our LLMD on Friday and I'm so interested to find out what he gleamed from the conference as well. I am focusing on all the good things and staying in "gratitude mode" lately, too, because, otherwise, I get frustrated at how slow I am progressing. Good news is, there is progress for all of us. YAY!
Have a great day! Hope the sun is shining for you today.