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repeated treatment failures. TICKED OFF

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Old 12-10-2011, 07:01 PM   #1
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repeated treatment failures. TICKED OFF

Hello. I was diagnosed with Lyme disease after 8 months of unbearable hell. It started with swelling in the soft tissue of all my fingers. It was diagnosed as Raynaud's, Chillblains Panniculitis, name it, I heard it. I developed what I thought was a horrible flu with a very high fever, a stiff neck and soaking wet night sweats. I developed rashes and migrating joint pains as well. I would also get hot, burning flushing in my skin and blurred vision. Finally, I found a wonderful LLMD and got the diagnosis of Lyme. I was bit by a tick a little more a year ago and just got symptoms a year later. Anyway, I began treatment in July with Doxycycline. This did not work at all! The next month I moved onto amoxicillin which actually worked better. The low grades fever disappeared. Then zithromax was added. I developed itching all over my body and did not know if it was a herx or a drug sensitivity so I stopped. Then I went on ceftin and zithromax.

This helped a little but I eventually hit a break wall. I wanted to start I.V. but this other Lyme doctor said I was not treated for all co-infections yet and Rocephin only treats Lyme. She said the nodules on my toes strongly suggest bartonella infection. I have a yeast problem too and love to eat sugar. (I am addicted). Finally, biaxin was added into the mix. Once I hit a break wall they decided to treat me with Rifampin and biaxin together. I believe what I had is a herx.

I fell so ill that I could not even make it to the bathroom. I honestly feel I have not improved much at all. I have been on antibiotics for 7 months now. I cannot get rid of the swollen soft tissue nodules on fingers or toes. I also have livedo reticularis, mottling of the skin. I got hot sensations on my skin and rashes wherever my clothes touch. What worked for you? Do you have any treatment suggestions for me? Should I give Rifampin more time? We also discussed plaquenil and tinidazole for the future. Please let me know what you suggested. I am also taking nattokinase, is that as good as lumbrokinase?

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Old 12-12-2011, 12:25 AM   #2
Join Date: May 2011
Location: Monroe, NY
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Re: repeated treatment failures. TICKED OFF

Lumbrokinase is better. Also look into woebenzyme and allicin (garlic extract). All help with the blood.

How much Amoxy did you take? Amoxy has a half life cycle of 1-1 1/2hr. So it is quickly filtered by your body. You should be taking 1G of Amoxi every 8hrs. If your doc prescribes you Probenecid, it will allow your body to retain the antibiotic for longer periods. You would take 500MG of probenecid every 8th.

So that's 3G per day, but many may need of up to 6G per day and I heard of someone doing 7.5 per day. I have heard of two people who were deathly I'll and got better on that regimen.

This all depends on the person though and what confections you have. This will also most likely mitigate your symptoms but not cure you. After you are ready then you need to add either Flagyl or Tindamax, both are cyst busters of Borrelia and will kill the cysts that was forced with the Amoxi.

Old 12-12-2011, 12:33 AM   #3
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Re: repeated treatment failures. TICKED OFF

You will not get better on that alone. You have to stop eating sugars and carbs, it's what feeds the Borrelia. You also have to exercise every other day for one hr, using something like small weights. This is to build up your immunity.

You can eat veggies, meats , and dairy products. Very little fruits since they have too much sugar. Lemons and grapefruits are ok, unlimited amount.

This information comes from a doctor who has been treating for years and from the people who got treated and listened and got better.

Old 12-12-2011, 02:35 AM   #4
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Re: repeated treatment failures. TICKED OFF

I would just be careful about overdoing exercise. Most lymies are exercise intolerant, meaning anything that starts an aerobic cycle can bring on a flare within 24 hours. Most LLMDs are very cautious with their exercise recommendations. Gentle activities such as stretching, Yoga and walking are better choices when in the throes of healing from Lyme.


Last edited by jenj770; 12-12-2011 at 05:53 AM.

Old 12-12-2011, 05:59 AM   #5
Join Date: May 2011
Location: Monroe, NY
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Re: repeated treatment failures. TICKED OFF

Very true.  I had sent her Burasscano's notes and it explains the exercise routine.

I know of someone who could not hold their hands up for more than 30s and their muscles burned.  They started on small weights for 10min a day for weeks and built up.  This person is fully recovered now for a few years.  One of the fortunate ones with no lingering symptoms.  She ate NO carbs and NO sugar at all and stuck with the program.  Compliance is a must in chronic cases.

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