Brand New Lymes Pt with lots of questions

[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

[kimballot]

Hi Karen - I am glad you found the Latitudes forums! Your post right now is in the PANDAS forum. While people with PANDAS can have underlying lyme infections, not all do. Therefore, latitudes made a separate LYME forum that deals specifically with lyme issues. You might want to post your questions in the lyme forum so people with lyme issues that do not have PANDAS will see it as well.

 

Best of luck in your journey!

[lyme_mom]

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

 

You might want to call Dr. Ann Corson, the pediatric lyme specialist in Chester, and ask for a good recommendation. My doctor is near Annapolis MD, couple hours a way. Ceftin is used for lyme and diflucan is supposed to break up lyme cysts. Usually you take doxy first and then add the ceftin. Seeing a llmd is a good idea. IV antibiotics are only used when the oral antibiotics do not work. Having a picc line is not something to jump into unless the llmd says it is your best option. You can't get it wet and you have to be careful not to strain your arm with it in b/c it could move the line. If the oral antibiotics are not working fast enough you can always get bicillin shots. I am not familiar with some of the tests you mentioned although I have heard of neuroscience so I cannot comment. It is true that a negative western blot does not rule out lyme b/c your immune system may have stopped fighting it and no longer produces antibodies. Its a long road but you can get better. Detox and heal the gut as you go and it will help.

[KarenF]

Thank you to both of you. I really appreciate your words of wisdom. And thank you for telling me I posted on the wrong site. I thought I was posting on the Lymes site. I hope I reposted it correctly. Thank you again!