So the first lyme doctor I went to treated me for 9 months . She was very conservative and she didnt even want to treat me. I had to pretty much beg for it. I was so desperate for treatment.
She only had me on Biaxen and Plaquenil.
I am now seeing an amazing lyme doctor. During my first appointment with my new doc, she put me on doxy and rifampin (becuase i tested positive to bartonellla Henslae and Quintana) she also had me start flagyl, twice a day two days in a row a week.
Ive been treated by my new doctor for about 3 months. I'm so happy to finally have found a great lyme doctor, but i cant help but feel im very behind in my lyme treatment now. i wasted 9 months with insufficient treatment
Posted by jackie51 (Member # 14233) on :
I would think the first treatment did something other than waste time, but who knows.
Glad to see you have found a great lyme doctor. Far too few out there.
Posted by lymegal23 (Member # 28573) on :
i know what you mean but i was only on one antibiotic (biaxen) and it was only going after one form of lyme
im assuming it must definatly have set me back. i only started cyst busting in october.
Posted by seibertneurolyme (Member # 6416) on :
Hubby could not tolerate cyst busters until just last year -- 10 years after the got sick and 7 years into treatment.
Not everyone can tolerate the high dose multiple meds from the start.
I wouldn't worry about what has gone before -- just make the most of treatment going forward and learn from the experiences.
We have made plenty of what could be called treament mistakes over the years -- but you do the best you can and keep moving forward.
Bea Seibert
Posted by BackinStOlaf (Member # 23725) on :
At least you were on something. Many patients were not treated at all for YEARS on end.
Posted by lymeboy (Member # 24769) on :
Your story is very similar to most people here. I ran around for 5 months before I found a lyme doc. That doc was too timid. I switched and went to a complete disaster of a doc. Switched again and I am finally happy and making tremendous progress.
Finding good lyme treatment is as frustrating as the treatment itself. If not more so!
Posted by hopeful4 (Member # 8486) on :
Would have been, could have been, best not to go there. Glad you have a great doctor now, and your treatment is moving forward.
Best wishes.
Posted by TF (Member # 14183) on :
How much time did you waste? Less than me.
I stayed 2 years with a doc who had me on only one antibiotic for lyme (and nothing for coinfections). I was also desperate for treatment, and I improved to a point under his treatment.
So, I would say you did well. And, I applaud you for switching doctors.
Thanks also for you post because it will go a long way toward educating others. It is typical that the first lyme doctor a patient picks turns out not to be top notch. It is often traumatic or gut-wrenching scary to leave this doctor for another one. But, that is what most of us have to do.
We live and learn. The more we learn about lyme, the better able we are to pick a good doctor. Just like with poker, you have to learn when to hold 'em and learn when to fold 'em!
Congratulations. You are doing a good job of learning!
Posted by manybites (Member # 33750) on :
Biaxin and plaquinil is helping me on BART/Fry bug that I did not touch in the begining .So you still were killing something.
Keep treating now and do not regreat on what happened .What is gone is gone.I lost 20 years of my lyme life when I did not know what lyme is and suffered unnecessary .
Posted by cht girl (Member # 26170) on :
Just a note on the pulsing Flagyl, I am no expert and not a doctor, but, Dr. Burrascano's notes from the 2011 ILADS conference, I believe he stated that cyst busters, Flagyl or Tindimax, should not be pulsed, but need to be taken continuously for 14 days or over??? Anyone else remember this....may want to check other posts on this.
Best of luck in your treatment.
Posted by Dogsandcats (Member # 28544) on :
I think most of us have a period of time we feel was wasted.
So glad you have a good LLMD now. I lost about 6 months, but I learned what isn't right!
Posted by nonna05 (Member # 33557) on :
what are the cyst busters??????Is planquinil??????
Posted by nonna05 (Member # 33557) on :
still wondering and wandering........
Question about busters. and what cht girl mentioned above///.any others???
Do all people need them???
I'm so amazed at how this disease works and just keeps going like the EVER READY Battery...on and on and on....
Posted by jackie51 (Member # 14233) on :
nonna--I think and I'm not absolutely sure, but if your LLMD treats you for two months during a symptom free state, then you are less likely to relapse.
So, the rule of thumb is symptom free for two months and then end off of meds.
I think Flagyl is a cyst buster, again not sure.
Posted by jarjar (Member # 8847) on :
Lymegal, curious what lab was used for testing bart. that you got positive results for both?
BTW your pm box is full.
Anyone else want to chime in about best lab for bart would be appreciated.
Posted by Abxnomore (Member # 18936) on :
I understand your frustration but the vast majority of those here have been in the same situation. Look to the future and that you have found an LLMD that you now like and is helping you.
Many of us have had to switch LLMD's several times and probably at least 95% of us went untreated for many years. I went undiagnosed for 14 years and know other who went much longer.
Posted by Tricky Tickey (Member # 26546) on :
Interesting information here. About the Flagyl pulse....
My experience was while taking the Doxy 400 mg daily, I was introduced to Flagyl about 4 weeks or so into treatment. Slowly, at first. Four days on Doxy, 3 on Flagyl. Started the Flagyl at 1 per day, next week was increase, and so on.
Fortunate for me that most of my bad herxing was pretty much over after the 8th week or so.
Complicated illness here.
Posted by Haley (Member # 22008) on :
I'm sure we could all look back and say if only I had .......
I had a Bullseye rash the side of Texas and I didn't know what it was ....duh
I became violently ill and forgot all about the rash....was not diagnosed for 1 1/2 years.
How many times have I gone back in my mind... why didn't I go to the ER?! I knew it looked really serious. I thought I had been bitten by a poisonous spider, but I had no pain so I didn't worry about it.
Posted by Lauralyme (Member # 15021) on :
Haley, there's no guarantee the hospital would of done anything about that bulls eye rash anyway. I've heard many stories where they dismissed those.
Posted by nonna05 (Member # 33557) on :
I'll try where I can....What are the cyst buster's??
Names med/herb/drops whatever
Posted by TF (Member # 14183) on :
nonna, from Burrascano:
"The antibiotics commonly used for Lyme do not kill the cystic form of Bb. However, there is laboratory evidence that metronidazole and tinidazole will disrupt it. Therefore, the chronically infected patient who has resistant disease may need to have metronidazole (or tinidazole) added to the regimen." (page 15)
So, the brand names of these meds are flagyl and tidamax.
Some say there are some herbs that work also, but I can't speak to that.
Burrascano DID say at the 2011 Lyme Conference that flagyl should be taken for at least 14 days in a row. Here is my note:
"Pulsing cannot be done with �azoles.� (For example, metronidazole and other meds that end with �azole.�) That is because the azoles need to be given for 14 days to be effective."
![[confused]](graemlins/confused.gif)
and wandering........