posted
I have displayed Lyme related symptoms (mostly neuro) for approximately 16 months. I was diagnosed with Lyme disease by a LLMD 4 months ago and have been on an aggressive oral antibiotic treatment program for the entire 4 months. I have been pretty sick and I'm beginning to wonder if I am making any progress. I'm also dealing with oral thrush that is very difficult to eradicate. I feel like I am at a crossroads with my treatment and I'm wondering if anyone else has been on a similar protocol for this length of time...how aggressive is this compared to IV antibiotics? I pretty much feel like I've been hit by a truck most days...some days I feel OK...Just wondering if this is a little much for my body to handle. I understand that this will be a long road to recovery, and I welcome the challenge, but I'm wondering if backing off on some of the meds may be more beneficial for me at this point. I am currently taking:
Ketek, 400mg 2/day Metronidazole, 500mg 2/day Cefuroxime, 500mg 2/day Zithromax, 250mg 2/day Probenecid, 500mg 2/day Diflucan, 200 mg 1/day Plus a bunch of other supplements that include probiotics, liver support, etc. I also do FIR Sauna treatments 3-4 times per week, bound on a minitramp when I can, walk a little, and I'm considering hyperbaric oxygen therapy.
Any thoughts or comments would be appreciated.
Posts: 15 | From Wisconsin | Registered: Dec 2009
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nefferdun
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Wow, that is a lot! I can't tell you what to do except maybe it is a co-infection that is not being addressed by this combo. Ketek is great for lyme. It pretty much knocked it out for me but when I began to feel more symptoms and ketek was not working, it turned out to be co-infections coming out. It looks like you have lyme covered in every possible form - even diflucan can address it - but I am not sure about the other infections.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
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Yes, all you have been treating for 4 months is lyme disease.
After 2 months of treating lyme, my now famous lyme doctor moved on to treating bartonella and then babesiosis. He got rid of all 3 of them for me in 1 year.
Many people do not feel better until lyme and at least one of the coinfections is treated. Generally, the doc treats the coinfection that is bothering you the most first.
I hope that at your first appt you were tested through Igenex for babesiosis and bartonella. Even if tests were negative, you should be treated for these diseases, especially if you have any symptoms of them.
I and my friends all got rid of lyme and company with oral antibiotics only. Don't think of IV as the magic bullet because it is not.
Based on the activities you are able to do, it doesn't seem to me that you need IV. It seems you need to start treating coinfections. Your doc should continue lyme treatment while treating the next coinfection. However, you don't need to stay on all those lyme meds. One should be sufficient by now.
So, don't expect progress until you get rid of your most troublesome coinfection. Have you looked at the Burrascano Guidelines? They are here:
Starting on page 26, he lists the symptoms of each coinfection. So, read those and see what you think.
Also, since you are on so many antibiotics for lyme, you WILL have a difficult time with yeast infections. I hope you are on a strict anti-yeast diet. Because if you are not, you are just feeding the yeast (it eats simple sugars) and it will not go away. All throughout my lyme treatment, all I ate was meat and non-starchy vegetables. No fruit, no sugar, no grains, nothing made with flour, no potatoes, no alcohol, etc. For breakfast, I ate quoina porridge. You can find the recipe on the Body Ecology Diet website. Quoina is a seed, so it can be eaten. Use stevia to sweeten the porridge. My doc told me to follow the Body Ecology Diet.
You can also see the Burrascano guidelines on getting rid of yeast. Scrub your mouth (including cheeks, underside of tongue, teeth, etc.) thoroughly with peroxide for about 1 minute. Then, rinse with water Then, open a probiotic capsule and sprinkle it on the tongue. Let it stay on the tongue until dissolved. (At least 1 hour.)
When you use peroxide, it kills everything in the mouth. The first thing to grow back is yeast, which is a normal part of the mouth. But, with a yeast infection, the yeast is way out of proportion. So, you put the probiotic in your mouth to put some good bacteria back in the mouth right away. (You should be using a good refrigerated probiotic.)
Any time you have yeast in your mouth, with each swallow it is transported into the stomach and the rest of the intestinal tract. So, you must stop it in your mouth, and maintain a diet that does not feed it. Any time I cheated on the diet, I got yeast. So, you can't cheat.
The diflucan will kill the yeast, but if you cheat, you will just bring it right back.
All you should drink is water with lemons squeezed into them. This will cleanse your body of all the dead bacteria. Don't use bottled lemon juice. All day long, drink lots of water with lemons squeezed into it.
If you get rid of the yeast, you will probably feel much, much better. Yeast will make you feel as sick as lyme disease.
Also, my lyme doctor had me drink kefir daily. It replenishes the good bacteria in the gut better than yogurt. It must be plain--no sugar. You can even make your own if you get some live kefir grains from someone. If you drink it before bed with your probiotics, you are replenishing the good flora all night long.
Hope this helps you kick yeast. I had it many times during my 1 year of good lyme treatment. But, it never stuck around.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for the great information. I have started to suspect that I may be dealing with one or more co-infections, so your comments helped to reinforce this. I will be following up with my LLMD next week, and I plan on inquiring about bartonella and babesia.
I suspect I may have bartonella and/or babesia based on what I have read about symptoms, etc. Most of my symptoms are neuro-droopy eyelid, face tingling, stiff jaw, difficulty with gait, left leg instability, leg pain/weakness, etc.
I was not tested for co-infections b/c I had actually started some antibiotics prior to my initial LLMD appointment. He said that this would effect the results and that I should save my money. At my last appt, I asked about co-infections, but the doc did not seem confident that I was displaying any classic symptoms for bart/babs at that time...I think I will be a little more assertive this time around.
As for the yeast, I am trying very hard to follow the anti-yeast diet...I have a difficult time getting enough calories on this and will occassionally cheat with a granny smith apple or some whole grain toast with a sandwich. I will definitely try the porridge as suggested.
It sounds like you have done very well with your recovery. Thanks for taking the time to give me a little guidance. It will help me to prepare for my next appointment.
Posts: 15 | From Wisconsin | Registered: Dec 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From page 4 of Burrascano:
"CO-INFECTION A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens."
When I went to my last lyme doc who cured me, I did not think I had any symptoms of babesiosis or bartonella. But, at the first appt he sent my blood to Igenex and I had both. We were both surprised.
Everyone in Maryland has all 3.
It is extremely rare for a person not to have all 3, in my experience with people from plenty of states.
Now, knowing all I know now, I can think of a few symptoms of bart and babs that I only had on ocassion.
(Over the years, I had a few episodes of severe abdominal pain that no one could ever find a cause for--gastro, gyn, ER, etc. But, at the time, I never associated that with lyme disease. Now I know it is a symptom of bartonella. I also had 2 days on which my soles of my feet burned when they touched the pavement. I thought the day was so hot that the pavement was hot and my soles of my shoes must have been thin. Now, I know that this was also bartonella. So, think and think about rare episodes and see what you can come up with.)
When the doc started to treat babs, I really got sick. So, that is another way to tell if you really do have a co without any obvious symptoms. What happens when the doc starts treating it.
So, the message is that if lyme treatment does not get you well, you have to suspect a coinfection. Both babs and bart can make you very sick.
I believe in coinfection testing through Igenex. Burrascano recommends it, and I am a Burrascano girl because his protocol got me and all of my friends well.
Regarding calories, you can eat all the fatty meat you want--ribs, steaks, ham, hamburgers, chicken with skin on, etc. That gives you a lot of calories. You can have all the gravy you want also.
Your vegetables can be swimming in butter. That adds calories too.
So, let these kinds of things be your treats.
You have to forget bread or you will never get rid of yeast. Once rid of it, my doc said that you could eat a few berries at the end of a meal (like strawberries, for example) if you really miss fruit. Never on an empty stomach, or you could get yeast again. So, no apples as snacks.
I completed my lyme treatment a little over 5 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
I had lyme undiagnosed for 10 years.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Just curious...what medications did you take to treat the bartonella and babesia co-infections? And, how long did you treat each infection?
Posts: 15 | From Wisconsin | Registered: Dec 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I'll answer you by private message.
Posts: 9931 | From Maryland | Registered: Dec 2007
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