Hi Everyone...I was just reading the "does anyone feel better thread and it got so long I figured I'll start another one.
I just found out around Thanksgiving that i officially had lyme after all the tests. No doubt most of my life and infected
more than once and all kinds of misdiagnosis. The Hep C diagnosis really threw everyone off the trail and the treatment for that which didn't work but caused even more damage really disguised the issue.
This forum has helped me more than anything.
I just completed 8 weeks of intense expensive IV chelation EDTA Zethromax , heavy metal, glutathione, sylamarin , rife,
little ozone IV, ozone sauna, lymph drainage and homeopath, and supplements, also blood thinner.
I spent a lot of money and it was worth every penny of it. I got the best of care and really believe if I hadn't gone where I did when I did I would have either committed suiscide from trying pill form doxcycline or even worse a stroke.
I see all of us trying so many things and I have all the terribel neurological pains and damage like rest of you too.
My doctor was very honest and told me I have had lyme too long and there is a lot of damage and will be in pain rest of my life but it will get better and there are things I had to do to make this all managable.
The one thing that he picked up on was the thick blood. Once I started the blood thinner I no longer felt like I was on the verge of my head exploding or having a seizure when ever I got a headache.
This I find a little disturbing if every lyme patient is not being treated or checked for thick blood. It is very very common and dangerous and will also make the whole notion of any medication working the way it should while it is trying to work through this thick blood. If you look in the book From fatigue to fantastic. and go to where they talk about
lyme it is the first thing they say about
treating lyme and chronic fatigue type conditions.
So I consider that a basic 101A of lyme treatment. nothing out of left field or off the grid with checking how thick a patient blood is. And believe it or not there are plenty of LLMD and LLND who are not looking at that.
Another real basic for chronic ill people is heavy metals. Especially lyme. When I started doing the heavy metal treatment that was another thing that changed the way I was feeling. It was also IV. I had to do ,,I think it was called DMSO IV and then pee for 12 hours and they sent out the pee for analysis $ 65.00 for the test. and then the next day i would get another IV treatment for remineralization or vitalization .
So those are TWO things that made me feel so much better.
Everytime I got zethromax antibiotic which was basically 3 times a week I did 3 hours of EDTA IV. This I believe was to
open up all the cells or something so that the antibiotics could blast in there.
In order to cut the herxing I did the ozone sauna box and also the lymph drainage wand treatment each day that I got abx treatment.
My herxing through out this whole thing was nothing compared to my forst 8 days of a pediatric dose of doxcycline. Before I found this doctor I tried the doxcy thinking I can tuff this out. what a joke. I was in a puddle of tears completely freakig out in pain. frightened to death . I never felt so hrrible in my ife and kept saying"YOU CAN DO IT> YOU ARE TUFFER THAN THIS" I had to stop after 8 days. There was just TOO much infection and years of damage to just slam myslef with any antibiotics. I was just too far gone.
With this IV treatment
I did coffee enemas just about
every night. NO epson baths. NO major suffering. I had about
10 days of hellout of 8 weeks. I was sick but nothing like those doxy pills.
I NEVER did the epson salt baths or took any magnesium because my doctor is an antimagnesium while on treatment thinker.
At one time magnesium was part of their protocol and they realized it was causing relapsing and when the took the magnesium away the results changed more and more for the better.
So this is another contrversy out there in lyme world.
I did her from rifing. It was pretty powerful for me but that is over now.
I take roxy codone 5mg for pain. some days I take total 20 mg. some days more.
also I use fentynol patches which I think help but really rely more on the roxy.
I was on 20 mg of prednisone for 2yrs which I think really brought the lyme out into a frenzy in the first place but I was so sick I needed it and didn't know I had the lyme. I just was so sick and in so much pain I needed 40 mg to do anything and then got down to 20 mg and could never get under that.
Now I am on hydrocortisone about
40 mg a day. I had gotten myself down to 10mg of the prednisone for about
3 months and now am going into this hydrocortisone hoping to get to lower dose but for now the idea is to just get away from the prednisone.
o if I have to take more pain meds to get off prednisone also I will do it.
So what I'm trying to say is I am feeling better and these are the things.
heavy metal detox.
and the way I was given the antibiotics. I would have never made it on the pills.
I was told by my origional doctor I had to have IV because the situation was so far gone for so many years and I have liver disease on top of it all.
and who knows what else I left out.
I am going in once a week to get what ever else treatments I can afford.
medicare did not pay for any antibioticx.
I was weed wacking, mowing the lawn, build a bird house. and doing lots of other fun stuff. riding bike.
I am still not 100% and I haven't been in 25 yrs. I definitely am better and will continue to stay under this doctors care.
I feel very fortunate to have been able to do what I did.
If anyone wants more details you can email me.
But the point of sharing this was to let you all know how it been going and to answer what I think HELPS those of us who are realizing this has caused a lot of damage. My doctor also has lymes so he understands every pain in my body and where it is coming from.
He just did some more tests on me today. He always understands what is going on. I LIKE THAT. He is always looking for a way to make it better. He was in the office everytime I was there and had a staff of 8 people taking care of 4 to 10 patients.
I feel like a patient there and getting royal treatment and care. Not sitting out n the waiting room waiting an hour to be seen and rushed out being told to take something and come back in a month.
I think this lyme thing is brutal and the brutal part is the way the patients are being treated. I think that too many doctors are throwing darts at the wall.
I see that there is all different approaches. Some people can actually do this completely homeopath but I wonder how far gone they are?
Some of us have a life time of destruction going on here not knowing what is going on.
Also there is something about
this disease that it breaks your spirit and that is the deeper condition. The deeper illnes is when the spirit is broken down and it becomes so black that is when I have to question anyone being on antibiotics and this
type of suffering going one.
Some of the listings I read here I hear the suffering and it is the medication. If anyone is going through this they should be given a lot more support . I think it is dangerous and cruel.
It becomes this big test of just how much can a person handle. It's not supposed to be like this. and it is not a 2 week thing. I am reading stories of YEARS people are going through this.
Also, I know I have posted al this before but you never know who new is reading but my doctor would not give me antidepressants because the lyme is in our brains. So he gave me DL PHELANALINE
This lyme is risky stuff so anyonw who writes a book and just lists things like ..lamictal and cymbalta is really taking some big liberties to put that in a book as a way of dealing with lyme.
Every patient is different and has to be seen everyday while on heavy antibiotics and then taking antidepressants on top of it. It is not such a simple thing.
We are trying to help ourselves so we buy books about
lyme and just cause it is in a book written by an MD doesn't mean it is tested , proven SAFE SURE. so be careful.
again if anyone wants to email me I will share details of anything else I can.
Lots of love to all of you and thankyou all for so much support. I still have a ways to go but I am back on my feet and
not completely flattened out.
hep c , lyme
Dad has lyme
Post Edited (bucci) : 4/2/2010 8:32:40 PM (GMT-6)