New to Lymes

[KarenF]

Hi,

I've been reading your site almost nonstop for the last 24 hours and am so happy I found it. I live in the Phila area and was recently diagnosed with Lymes by the Neuroscience My Lyme Immune ID test 5650 and the Neuroscience Lyme ITT Test. The doctors said my lyme is high so he thinks I've had it for a while. On the one test is says my VisE-1 is 8.2 and the other says it is 5.7. It also says my DbpA is 4.6 on the one and 3.8 on the other. The second test also does the Western Blot and all my bands were negative. I have a weakened immune system and have been treating at the Woodlands Healing Center in Quakertown and with Dr Neville at the Clymer Healing Center for the last few years because I have terrible fatigue/depression coupled with anxiety. I recently started with insomnia and that is when I had these tests done. They put me on Ceftin 500 mg BID, Diflucan 100 mg 1x/day, Cat's Claw 3x/day and Oregano 2x/day. They also gave me 2.5 mg Zyprexa to take at night for sleep. After a week of the Zyprexa, it allowed me to fall asleep and has taken care of the anxiety. This week, I have an appointment with a lymes specialist, Dominic Braccia, just to make sure I am treating int he right way.

My questions are:

1) Are there any lymes specialists in the Phila area you recommend/have gotten good results from,

2) Has anyone else been diagnosed with Lymes by using this neuroscience test and do you know if it is reputable (I went to another medical doctor who said if my Western Blot is negative then I don't have Lymes whereas the integrative doctor at Woodlands says it just means my immune system is so compromised that the bands aren't showing up),

3) Are there any other tests I should ask to have done or is this test sufficient,

4) Has anyone heard or treated using Ceftin and Diflucan and gotten good results,

5) Is there anything else you recommend that I do or take as I'm walking this journey (I read in some of your posts that you are supposed to take a cyst buster. I am not sure if that is why they gave me the Diflucan or if I should be taking something else as a cyst buster)

6) Do you know the pros and cons of using oral antibiotics vs IV antibiotics (I'm pretty sure the lymes specialist I'm going to see only uses IV antibiotics and Woodlands the place I'm currently treating under uses oral antibiotics and believes you can better from lymes with oral antibiotics)

Thanks for your help and thank you for having a site like this. It gives me such hope and encouragement.

 

Warmly,

Karen

[philamom]

Hi,

I've been reading your site almost nonstop for the last 24 hours and am so happy I found it. I live in the Phila area and was recently diagnosed with Lymes by the Neuroscience My Lyme Immune ID test 5650 and the Neuroscience Lyme ITT Test. The doctors said my lyme is high so he thinks I've had it for a while. On the one test is says my VisE-1 is 8.2 and the other says it is 5.7. It also says my DbpA is 4.6 on the one and 3.8 on the other. The second test also does the Western Blot and all my bands were negative. I have a weakened immune system and have been treating at the Woodlands Healing Center in Quakertown and with Dr Neville at the Clymer Healing Center for the last few years because I have terrible fatigue/depression coupled with anxiety. I recently started with insomnia and that is when I had these tests done. They put me on Ceftin 500 mg BID, Diflucan 100 mg 1x/day, Cat's Claw 3x/day and Oregano 2x/day. They also gave me 2.5 mg Zyprexa to take at night for sleep. After a week of the Zyprexa, it allowed me to fall asleep and has taken care of the anxiety. This week, I have an appointment with a lymes specialist, Dominic Braccia, just to make sure I am treating int he right way.

My questions are:

1) Are there any lymes specialists in the Phila area you recommend/have gotten good results from,

2) Has anyone else been diagnosed with Lymes by using this neuroscience test and do you know if it is reputable (I went to another medical doctor who said if my Western Blot is negative then I don't have Lymes whereas the integrative doctor at Woodlands says it just means my immune system is so compromised that the bands aren't showing up),

3) Are there any other tests I should ask to have done or is this test sufficient,

4) Has anyone heard or treated using Ceftin and Diflucan and gotten good results,

5) Is there anything else you recommend that I do or take as I'm walking this journey (I read in some of your posts that you are supposed to take a cyst buster. I am not sure if that is why they gave me the Diflucan or if I should be taking something else as a cyst buster)

6) Do you know the pros and cons of using oral antibiotics vs IV antibiotics (I'm pretty sure the lymes specialist I'm going to see only uses IV antibiotics and Woodlands the place I'm currently treating under uses oral antibiotics and believes you can better from lymes with oral antibiotics)

Thanks for your help and thank you for having a site like this. It gives me such hope and encouragement.

 

Warmly,

Karen

Hi Karen- I'm glad you found this website. I saw your reply to my severe leg pain post...thanks for sharing. I only have a moment now but will post more later. I am also from the Phila area (suburbs). I have heard so-so feedback regarding Dr. Brac...I will pm you info later. There is a mom on this forum who has seen him, so hopefully she will respond as well. Woodlands in Quakertown is a great, great treatment center (don't know about for lyme though). They don't accept our insurance...or my family would be patients! I'll add more later. Hang in there!!

Melinda

 

sending you a pm now.

Edited February 13, 2011 by philamom

[dabel]

This lab is actually doing a case study on my family. From what I have been told and understand the ITT test is more sensitive than the Western Blot. It is not uncommon to have a negative Wb test which becomes positive once treatment has started and the bug is provoked. My family has found out that we have Lyme from this testing. I do not have a lot of time to respond now but I wanted to let you know that we have had this testing as well and believe it to be reliable. I am relatively new to the Lyme's world so others are better to answer your treatment questions. I wish you a speedy recovery!

[KarenF]

This lab is actually doing a case study on my family. From what I have been told and understand the ITT test is more sensitive than the Western Blot. It is not uncommon to have a negative Wb test which becomes positive once treatment has started and the bug is provoked. My family has found out that we have Lyme from this testing. I do not have a lot of time to respond now but I wanted to let you know that we have had this testing as well and believe it to be reliable. I am relatively new to the Lyme's world so others are better to answer your treatment questions. I wish you a speedy recovery!

 

Thank you so much. It gives me comfort to hear these things. I don't know how much Lymes Woodlands treats but I do know they apparently have something you can get done called blood irradiation. I think that I might be getting that at the end of my treatment because it gets rid of the last bit of Lyme. I will keep you posted. Please let me know how your case study goes. I hope it goes really well!

[kmom]

Hi Karen,

 

I'm the one Philamom is talking about. I'll PM you with the scoop and explain why/who we go to for treatment instead. It would have been a match made in heaven since your appt tomorrow is 2 miles from my home but didn't work out that way for us. I think it's a very individual choice on how patients want to proceed w/ treatment and how much you feel the Dr. knows depending on how complicated the case is. Although, many of seem to love the certain doctors we discuss on here and only make them more popular and bottom line, people improve which is key.

 

Philamom-thanks for scoop on The Woodlands. I have looked that place up but had a feeling they weren't Lyme savvy enough for my liking since no one talks about them on forum or around town. Our DAN dr. had recommended them for gluthione IV push injections although we never did it. We got the transdermal cream instead. And thanks for the b-day wishes--"21 again!" I wish! Felt like 81 yesterday! LOL!

 

Kristie