KarenF

Thank you everyone. Michael or someone, could you tell me how you knew the serrapeptase was working to break down the biofilms or how I would know if the nattokinase is strong enough? I am not sure what to watch for. I ordered the sacc so I will take that and the vsl#3. hopefully together they will prevent me from getting candida.

Hi, I went to a lyme doctor today and had a PICC line put in. I will be getting IV Rocephin and taking 250 mg oral Arithromycin on Monday, Wed and Friday, then I will take 500 mg oral Ceftin twice a day on Sat and Sunday when I will not be getting the IV. I am also suppsoed to take Butyrate by Body Bio twice a day to help protect my gallbladder as well as VSL #3 three times a day. I am also takingo taking Nattokinase twice a day as well as Cowden's Banderol and Samento to kills biofilms. My doctor said that he learned to add this for the biofilms at a conference he recently went to in Phila by Columbia University. Has anyone heard of that? I have a strange question. My sinuses have been clogged and I started taking Mucinex. Has anyone had that problem? I will ask the doctor tomorrow if its ok to be taking Mucinex with the other stuff he gave me. I finally have a treatment started. I pray it goes well. Thanks for listening, Karen

Hi S&S, You mention about exercising (not high impact). Could you say more? I am confused about what kind of exercise is ok? Is walking ok? Should I be lifting weights? Do you know? Thank you, Karen

Thank you Mom2Alex. Can you tell me how your son describes his brain fog?

I see you did not get a response to your email. Was wondering if you have since learned more. I had this test done as well and mine said something a little different. My results are at the doctors. I will get it on Friday and can tell you. At least you'll know that they dont put the same thing in everyone's test. What I know is that their test is supposed to be cutting edge but then again a lot of doctors dont put much weight in their test either. so its very confusing.

My friend's naturalpath is encouraging her to buy an Alpha Stim Unit (www.alpha-stim.com). It is supposed to help with anxiety, depression, insomnia and pain. I am trying to find out for her if they are any help. Does anyone on this site know anything about them or have you heard of anyone whose used one? I'd be so grateful for your help. Yesterday I read about a particular coil machine being a big help but they're $3,000 and the Alpha Stim machine is $600. Also, is there a place you recommend for reading about the symptoms of different co-infections? My symptoms seem to be different from a lot of people's. Sometimes my legs really ache but most of the time my symptoms are intense anxiety, depression, insomnia, short-term memory loss and like this jelly feeling in my head. I hear people talk about joint pain and mine is like muscle pain when I have it. In addition, I started with fatigue where I could sleep so many hours and never had trouble falling asleep again that night. But now I dont have that. I have like malaise or apathy where I always want to lie my head back but its not like a physical fatigue, In fact, I wish I had that again. I know this is not the case, but I feel like I was so much better off sleeping too much than not being able to sleep but feeling so listless or full of malaise. So far, I have just been diagnosed with lyme in general through a test by Neuroscience that a doctor for women's health did. I then went to a doctor who does IV therapy and he did a bunch of blood work by Medical Diagnostic Labs to test for co-infections. I am new to learning and with the malaise it is so much effort trying to do all these searches. The strange thing is that I was this person with such zeal and who loved to do research. It is so bizarre to be in my body right now. I don't retain things and it doesn't seem to be a time where I have good memory like the way people explain brain fog where at times they are sharp. I don't ever feel a moment now where I am sharp. I feel like jelly is floating around in my head and blocking me from trying to find the words that I want to use. Sometimes I remember things from the past but I rarely remember things from the last few days. Like someone says how was your weekend and its just blank and it scares me. I am blessed though because an older couple from church took me in while we figure out what is going on. I was so listless I wasn't even feeding myself. Ive never been married so I am thankful for this couple that they were so kind. The wife had chronic lyme and she knows me from when I had all my zeal and zest so she knows I wouldnt act this way if I knew how to snap out of it. Working harder doesn't do it. Its like my brain is in slow motion and I cant make myself have the zip that I see other people have that I used to have. But I am trusting that it will eventually get better. I'm not in a wheel chair and I look wonderful on the outside. People say all the time how wonderful I look. I used to not like that but now I do because I realize it could be worse. Lastly, does anyone have any thoughts on starting with orals vs starting with IV? This one doctor who only does IV says that orals don't cross the blood brain barrier. But it seems most of you with children do orals and your children improve so orals must cross the blood brain barrier. I am not sure if I am on a site that is for children and if I am I apologize. Thanks for your input. PS: I am 44 and live in the Phila area. So my lyme IV doctor is in Harleysville and the woman doctor I went to who did the Neuroscience test is in Glenside. She is new to lyme. She studied under AC for a few months and is now on her own. I also put myself on the waiting list for AC but it will take a while to get in with her.

Thank you everyone. Susie, do you know what yours is from? do you know if its your adrenals or a co-infection or what causes it? I will ask the doctor about remeron, what dose did you start on and i will start taking magnesium right away.

Thank you Nancy. I will get some Melatonin Sr. Could you tell me how much Magnesium to take and which form? I'm not sure if it matter but jsut thought I'd check. I didnt realize Bartonella can cause these kinds of symptoms. I look forward to knowing what I have. I jsut know right now that my lyme test by Neuroscience is positive. But I dont know anymore yet.

Hi, I am awaiting being seen by a doctor in the Philadelphia area for lyme. I have terrible pounding in my body like a strong pulse, insomnia and anxiety. I feel like my body is so revved up but yet I feel like lying down all the time but yet I cant fall asleep because my body feels on overdrive. I am using a natural progesterone cream which seems to help it somewhat but it is torture. My appointment is not til the end of the month and it cant come soon enough. Has anyone had this? I am tkaing 1 mg of Lunesta for sleep but it only keeps me asleep for 5 hours so I sleep from 11pm til 4 am. It is lonely and frightening to be up at that time. I am glad to have this site. Thank you for any feeback you can give me.

I am so sorry you had such difficulty with the car. You have such a good attitude though. I am glad you received good answers from the doctor. I wish I could contribute more but am thankful there are such knowledgable people giving good feedback about the pulsing. May things go in an upward progression! Best, Karen

Hi everyone, Thank you so much for your messages and websites to go to. I feel like I am starting to learn about Lymes and that is encouraging. Here is my story and an update on where things are. I am from the Phila area. About three months ago, I got a blood test by Neuroscience done called My Lyme ID. Check out http://www.mdjunction.com/forums/lyme-disease-support-forums/medicine-treatments/2015916-neuroscience-new-id-tm-compre-profile and http://neuroendoimmune.wordpress.com/2010/11/17/ittcytokine-testing-diagnosing-lyme-disease-and-beyond/#comments The reason I got this done is because I was struggling with fatigue and the doctor recommended I get their CytoKine blood test done to see if there were any lowlying infections or inflammations going on at the cellular level. The results recommended I get their My Lyme ID test done because my blood was showing either a past infection with lymes or a current infection. After more of their testing, I was given Ceftin and Diflucan from a doctor at Woodlands to take for two months and then told to come back and re-evaluate. He said I would get better and better on the antibiotic. Within this first month, I was noticing that I started feeling better and then started feeling worse. Since lymes is not Woodland's specialty, I was able to get an appointment with a lymes specialist Dr Braccia. I saw him yesterday and he said it is not his experience that people on oral antibiotics get better. Rather they go up and down because of the herxing and most tend to need to do IV antibiotics as well to hit the inner cell. He said I could continue taking the two months of Ceftin and come back to him at the end of the two months to reassess. He said in the rare cases where the antibiotics work, it takes more than two months to knock the infection out entirely and that the maximum amount of time that you can stay on Ceftin is three months. So he said he would like to see me stay on Ceftin and the Diflucan for three months and take flagyl at the very end to destroy the cysts that might form. After that I could try going off the antibiotics and see if I am better. If not, he would recommend IV antibiotics. I've noticed that I have some profound sadness, weepiness, apathy, lethargy. What started this whole search is fatigue. I am guessing these current symptoms are just exacerbations of the fatigue brought on my herxing. My hope is it doesnt last too too long. My other hope is that the Cat's Claw, Oregano, natural progesterone cream and Probiotic will cause them to be short-lived. Because of all you guys, I learned about Dr Beals. I put a call into their office and am awaiting a return call. In the meantime, I am staying on my antibiotics and hoping for good results. Thanks again for better educating me and steering me in the right direction. Best, Karen

Best wishes!! Praying it goes really really well!!!!

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!

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!

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, 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

I am brand new to this site and brand new to lymes (just got diagnosed via the Neuroscience ITT Lymes test). But for what it's worth, I had deep leg pain before I started the antibiotics the doctor wanted me to take. It was so deep and pinaful and I had never ever had this before. I then started on the regimen he prescribed, which is Ceftin and Diflucan. Now the leg pain ebbs and flows and is not as intense. So maybe it can be from the Lymes.