The doctor I've been seeing thought highly of Igenex, so I thought that was a good sign.
I tested positive for Lyme IgM Western Blot by Igenex standards. And I tested positive for Bartonella Fish.
But the doc gave me a 1 month prescription for Doxy at 200mg daily. Red Flag! I asked about a longer treatment duration and he gave a me a second month and said that should be fine.
Since getting the prescription, I have done more research and as I understand 400mg daily is the LLMD advised minimum for Doxy. So I plan on doubling up the Doxy, but even so 1 month is short.
Additionally, I think I should probably be taking a second antibiotic. From poking around in here, I am considering rifampin.
But clearly I need to be seeing a certified LLMD. I am planning on seeing one recommended by Lymenet.
My question is: Is there any reason to wait on taking the Doxy till I have a second prescription on hand? Am I going to give the bugs an advantage if I start with just 1 antibiotic? Is there a significant advantage to starting with 2 antibiotics right off the bat?
Also, an thoughts on which antibotics combo to take for Lyme and Bart is welcome. My impression is Rifampin will effect Lyme in cyst stage (so good to double with Doxy), but will it effect Bart in cyst stage?
I am looking forward to your feed back. Thank you
Posts: 12 | From New York | Registered: Sep 2014
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posted
Many start on doxy, 200mg 2x/day without any second one right at the beginning. Yes, you need to see a Lyme-literate doc for all your treatment plans!
Bartonella doesn't have a cyst stage - only Lyme bacteria have both regular and cyst forms.
Posts: 13117 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your main concern should be starting to treat with doxy and then running out of doxy long before you can get in with a lyme doctor.
The doc I used to recommend advised patients NOT to start treatment unless they could continue it until they saw her.
In other words, there is no sense taking doxy, then running out and not treating lyme at all for a while and then finaly getting proper treatment through a lyme doctor.
Now, if you just got bitten within the last few weeks, then take the doxy. But, if this has been going on for 6 or 8 months or so, no sense starting this treatment if you can't continue it. No sense at all.
Lyme doctors generally have a 3 to 6 month wait to get in, so find out when your appointment with a real lyme doctor is going to be and then you will know what to do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thank you all for your responses, I really appreciate your feed back and insights.
Robin123, thanks for letting me know that it is not uncommon to start Doxy solo. I have seen reference to Bart having a "tumor" or "cyst" in other posts. Is that totally inaccurate? RC1 refers to a possible cyst stage in this recent post: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=132047;p=0
TF, thank you for highlighting this! I did try to book some appointments this afternoon and realized exactly what you are pointing out: everyone is seriously booked! I have had fatigue issues for the past 3 years, so starting and stopping treatment sounds like a waste of time and a waste of helpful bacteria!
Lymetoo, thank you for the link to links! I will spend some time in there. I did test positive for Bart, so that is part of why I am considering it as a pair with Doxy. Why do you advise against it as a first-round drug. I know that people think highly of levofloxacin for Bart, but I am currently in physical therapy for a broken tibia and the risk of tendonitis freaks me out! Thoughts on Mycobutin?
Posts: 12 | From New York | Registered: Sep 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I have no idea what RC1 was trying to say in that post. Bart does not have tumors or cysts.
The best thing you can do for yourself while you wait to get in with a lyme doctor is to read and STUDY the Burrascano Lyme Treatment Guidelines found here:
This document is not an easy read because it was written to doctors to teach them about lyme and its coinfections and how to treat them. But, it will give you your education on this complex disease.
Read the short section on bartonella. Read what interests you. Eventually, read the entire thing.
Since you have had lyme for 3 years most likely (based on the fatigue), you really need lyme treatment that includes 2 different lyme antibiotics. Read "Combination Therapy" section to understand why.
Read and underline everything the patient is required to do. There is a LOT the patient is required to do.
Once you start lyme treatment, be sure you do all of these things. For example, the diet, the supplements, the exercise, the resting required, and the Don'ts: no drinking, no smoking, no steroids, no aerobic exercise, etc.
You will help yourself immensely if you study this and then commit to do all it takes for the patient to get well.
You see, the antibiotics are only one part of the Burrascano protocol. His protocol is a 4-pronged approach:
high-dose combinations of antibiotics; treat all coinfections
supplements and herbs
anti-yeast diet
a certain type of exercise (weightlifting for one continuous hour every OTHER day--a full body workout each time)
As Burrascano says, the exercise requirement is absolutely essential if you ever want to get rid of lyme. No aerobic exercise allowed (includes running, fast walking, etc)! The weightlifting will boost your immune system, drive the meds deeper into your tissues, and in many other ways enable you to get rid of these illnesses.
It takes total commitment by the patient to get well. Think of it like training for the Olympics. Treating lyme will be your full-time job once you start treatment. You will eat by the clock, take probiotics and meds and supplements at set times throughout the day, and do everything to obey all the rules. This will give you your best shot at getting rid of these diseases.
The doc is the key. Can't emphasize that enough. Without an aggressive doctor, you will just tread water. For example, my second doctor had me on just amoxicillin (high dose). I did this for 2 years!!! All it did was turn all of my lyme into the cyst form. If I ever stopped the amoxi, within 2 weeks it all came out of cyst form and I was as sick as when I started.
Once I studied Burrascano, I could see all the things my doctor was doing wrong. I even got to ask Burrascano about my case when he gave a talk at a lyme meeting.
He said, "If the therapy is inadequate, the disease will continue to progress." That was his explanation of how I could get additional lyme symptoms while on high-dose amoxi.
So, I switched to a Burrascano type doctor and became symptom-free in 8 months and finished with treatment in 13.
You MUST educate yourself so that you can evaluate the doctor and his treatment of you. You have to know when to hold 'em and know when to fold 'em.
Don't waste years with some doctor just blindly doing what he says. With lyme, it takes an educated patient to get well. If you just sit back and wait for the magic to happen, it likely will never happen.
Be prepared to travel out of state for good care and/or for immediate treatment. I know a Burrascano-type lyme doc who can see you in a few days.
When you are with a good doctor, you don't have to figure out what meds you need. If you are telling the doctor the treatment you want, something is very wrong! You are paying for expertise. So, you should not have to tell the doc the treatment to give you.
These are some of the things I learned when I had lyme, babs, and bart. Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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