I have had so many this and thats during my long journey with chronic lyme. Not as bad as I once was but far from better.
Mostly my fault or my bodies seems I was sensitive to meds and most of what I tried but mainly I never had a good doctor that would help me help me through the journey.
Are most of my symptoms still now Lyme I am not sure so thinking of trying to find a good doctor and starting all over.
There is no LLMD I could travel to or even afford but have read, researched and have found a good GP that is willing to work with me.
I feel I have nothing to lose except more side effects etc etc. I made in once but didn't stick with most protocols so at age 71 thinking of starting over and sticking it out no matter what. Does this sound crazy? I even want to be retested but one doc told me once you test positive you will always test positive..
My plan is not to go from one doc to another but to stick with one and do most of my research.
Posted by desertwind (Member # 25256) on :
Does not sound crazy at all! IMO, if you still have the fight in you then go for it.
I had/have/had/have been sick for close to 10 years. Have been treated by......5 different llmds. I am the QUEEN of stopping and starting my treatment. Very much like you and for the same reasons. My body at times would scream out "enough!".
I now see Dr.H. and over the past almost 2 years I had numerous stops along the way. But, I am far better now then I was when I started with him pretty much feel normal again. I was able to get a pretty long stretch of about 6-7 months of uninterrupted treatment which really made a huge difference. I would not do some of the mega doses that others have done as my body would pretty much shut down. You gotta find that place where your body can the handle treatment.
Try again - just know your limitations and signs of treatment fatigue. Best.
Posted by phyl6648 (Member # 28522) on :
Thanks Desertwind. It is a hard battle when our bodies can't handle aggressive treatment. Happy to hear you are improving.
Too so much controversy over chronic lyme..
Posted by lpkayak (Member # 5230) on :
i just did-but it wasnt abx or many meds...all supps
im making my way back. i think i got really toxic from 2 surgeries in 4 months
Posted by phyl6648 (Member # 28522) on :
I am so debating antibiotics.. Have started the supplements. Will stick with only supplements till after the holidays. Also going to try juicing and diet changes.. Good luck to you.
Posted by C.P. (Member # 38378) on :
I've had Lyme for ten years now, but just got the lab results to prove it in 2011. Because the Quest and Lab Corp Western Blot tests were negative, I, as well as all the doctors I had seen, believed I didn't have Lyme disease. I had never been sick before, so I had no idea about the medical community's incompetence.
I did, however, find a doctor who was working with me to remove heavy metals and treat my endocrine problems. I was his patient for six years. During that time I began to research my problems which all pointed to Lyme but because of the testing, he said I didn't have Lyme. Finally, I told him he was wrong and that I knew I had Lyme. I traveled to Missouri to see a LLMD because all of the Colorado doctors had very long wait times, and the doc in MO ordered the IgeneX Test which came back positive.
I'm still searching for a good LLMD. I've seen four already, but I haven't been too impressed by any of them. I just don't want to lose any more time by seeing a doctor who strings me along but can't improve my health.
I had an appointment to see Dr. H in NY, but I have such a difficult time traveling and don't want to have a doctor so far away that I canceled the appt.
I want a doctor who is going to know who I am and how to treat me without me having to remind him/her every time I go in for an appt. I need a doc who listens carefully and doesn't have a big ego. I'm tired of the contradictions. I'm not willing to settle and don't think anyone should.
I wish you well on your journey to find health. Don't ever give up the fight. C.P.
Posted by phyl6648 (Member # 28522) on :
Oh, how I hear you.. This is what I want but don't think they exist.. I can no longer travel any distance and can not pay out of pocket anymore. I feel what I did do was a waste of time and money.
Started getting sick in 2000 and wasn't dx until 2011.. Treated for a yr and stopped,then on again and off again..
Best of luck to you
Posted by C.P. (Member # 38378) on :
I got sick in 2003 while living in Fredericksburg, VA.
I don't want to lose any more time...life is too brief.
Posted by phyl6648 (Member # 28522) on :
C.P. it sure is and I feel the same but what do we do???
Posted by C.P. (Member # 38378) on :
We keep learning and searching until we find what we need to get well.
Trying new diets is a great idea, especially when they don't contain sugar. When I get well I will still continue the no sugar diet.
Sometimes it's the smallest things that have the greatest impact. If a small tick can bite us and make us very ill, then perhaps there's a small or simple shift that can restore our health.
Leave no stone left unturned...
Posted by desertwind (Member # 25256) on :
I like what you said C.P.
When I look back on my years of treatment and stopping and starting it is hard for me to put my finger on the ONE thing that helped get me over to the other side of health. I am not trying to simplify it at all but most certainly agree with the concept of the small things making a big impact.
I sometimes wonder if it was a cumalitive effect of balancing the abx.'s in a way that was not too harsh for my body, treating yeast and parasites, eating a plant based diet, getting back to nature and exercise and being aware of the shifts in my body.
You are so right..leave no stone unturned and keep searching for what it is that will make you "well" again.
Posted by Phoiph (Member # 41238) on :
"You are so right..leave no stone unturned and keep searching for what it is that will make you "well" again." --desertwind
Fortunately, I am well again, and would like to share my success story with anyone here who's interested...
I was ill for over 8 years with neuro-lyme and coinfections, including babesia and bartonella, and housebound for over 5 years.
I went through a living hell, but I am now well...living an active life, no restrictions, no meds...and feel incredibly fortunate to have my life back.
The answer was mild hyperbaric...I purchased my own chamber and oxygen concentrator, and treated myself at home.
If anyone is interested in learning more, I now help people network and find creative ways to access chambers...