posted
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
Posts: 995 | From somewhere out there | Registered: Oct 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
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.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
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.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
At least you were on something. Many patients were not treated at all for YEARS on end.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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lymeboy
Unregistered
posted
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!
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posted
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.
Posts: 873 | From WA | Registered: Dec 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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!
Posts: 9931 | From Maryland | Registered: Dec 2007
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
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 .
Posts: 1379 | From disable | Registered: Aug 2011
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posted
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.
Posts: 143 | From Louisville KY | Registered: May 2010
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
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!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
what are the cyst busters??????Is planquinil??????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
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....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
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.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
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.
Posts: 805 | From Utopia | Registered: Feb 2006
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
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.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
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.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
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.
Posts: 2232 | From USA | Registered: Aug 2009
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
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.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I'll try where I can....What are the cyst buster's??
Names med/herb/drops whatever
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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."
Posts: 9931 | From Maryland | Registered: Dec 2007
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and wandering........
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