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» LymeNet Flash » Questions and Discussion » Medical Questions » Conflicting treatment please help

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Author Topic: Conflicting treatment please help
one4islands
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A little background-suffering with 10 years of many symptoms with a positive WB in August of last year. No recollection of tick bite.

Saw my first Lyme dr (fairly new at treating patients)in November.

Began treatment in late December with once daily low doses of Zithromax and Clindamycin-90 days total.

Samento,Banderol,Lumrokinase, OLE, vitamins/minerals and supplements.

Saw another Lyme dr. (treating patients since 2007)in May.

Late April most of my symptoms were gone and I felt fantastic for about three weeks.

New Lyme dr. said to stop all but vitamins/supplements and to restart Samento/Banderol if symptoms started coming back.

Was given an rx for Ceftin should symptoms get really bad.

Resumed Samento/Banderol late May. Symptoms have been gradually reappearing and within the past month some worse than before.

Latest appt. with that 2nd dr. told to continue Samento/Banderol along with Ceftin.

Told that if symptoms don't start to disappear quickly to also add Biaxin with Ceftin once daily.

My first Lyme dr. told me I would be on abx/herbals for approx. 5-6 years.

Second dr. was ready for me to stop herbals/abx after symptoms almost went away with only 90 days of abx treatment and feeling symptom free for 2-3 weeks.

So, I am now questioning who is right. I would assume with symptoms that plagued me for 10 years I should probably be treated for a lengthy period of time.

My most recent CD57 was I believe 50-60 range (low).

I would welcome any suggestions/input/advice.

Posts: 412 | From Virginia | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
twicebitten
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Sounds to me like 1st doc made you feel better and he makes more sense to me. IMO

--------------------
One day at a time

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sutherngrl
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First doctor definetly. Many of us have treated for years in order to get well.
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CherylSue
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Your CD57 needs to reach over 120 to consider having the LYme controlled. That doesn't even include the co-infections which everyone has at least one.

ABX are considered the first offensive. Nutramedix products afterwards for maintenance.

IMO,
CherylSue

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ktkdommer
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Our doc says CD57 of 150 and symptom free for 3 months before ending treatment.

I don't want to know how long we have to go to get there but at least we are moving in the right direction.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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scorpiogirl
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I honestly what I have learned about Lyme is that no norm is the norm. There is no one standard protocol that fits everyone. Therefore, no doctor can tell you how long it will take to cure you. You just have to take it day by day until one day you are well enough for long enough time to stop the meds.

As far as the two doctors... I think it's better to pick one you trust/feel confident in. Otherwise you will always second guess yourself and the Doctor! Hind sight is 20/20 and when it comes to medicine it's all trails and errors, so no one knows for sure!

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TF
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I had lyme disease for at least 10 years. Plus, I had babesiosis and bartonella.

I got lousy lyme treatment for 2 years. Then, I switched doctors and in 8 months was symptom free. Treated for 5 more months and I was finished.

That was over 6 years ago. The doc is the key to getting rid of this disease. Can't emphasize that enough.

If you want to tell me the names of your docs through private message, I will tell you what I know about them.

If you are in northern Virginia, there are some really good docs around you so you should be able to get good treatment and not have to take 5-6 years to get well. But, 90 days is no where near long enough to get rid of this horrendous disease.

Also, nearly everyone in this area has babesiosis and bartonella also, so you will likely need treated for these too, especially considering that you have been sick for 10 years. According to Burrascano, being sick that amount of time virtually guarantees that you have coinfections. You can't get rid of lyme if you have an untreated coinfection. It is impossible. I proved that with my 2 years of just lyme treatment.

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one4islands
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TF- I sent you a PM with the drs. names.


Both of these drs. accept my BCBS insurance with a $25 copay. I cannot afford the Drs. who charge hundreds-thousands of dollars.

I liked the first dr. but questioned the drs. experience though the dr. spent a great deal of time with me.

This dr. was very good at responding to my emails and sharing important info via emails with the patients.

I sought the appt. with the 2nd dr. just to see if that dr. was on the same page in regards to treatment as the first.

My initial visit with the 2nd dr. went well and I really liked the dr.

The 2nd dr. I left a detailed voice mail message with no response. I was told I could email and still no response. A brief "I'm sorry" at my visit.

My 2nd visit, I felt I wasn't as pleased with the dr. Maybe off day for the dr, who knows.

Everything is telling me to continue w/ the first dr.

Posts: 412 | From Virginia | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
   

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