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Is this Lyme for sure?

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Posted 7/22/2014 7:35 PM (GMT 0)
My initial testing with IGenex came back a little murky, so my doctor put me on a one month dose of Doxy, 100 MG twice a day. After being on the Doxy three weeks, she re-did the IGenex Western Blot and I just got the results back today:

IGM:

18 kDa -
23-25 kDa -
28 kDa -
30 kDa -
31 kDa +
34 kDa -
39 kDa IND
41 kDa +
45 kDa +
58 kDA -
66 kDa -
83-93 kDa IND

IGG:

31 kDa IND
39 kDa IND
41 kDa ++
All other bands negative

Based on my symptoms and the above results my doctor feels very strongly that I do have LD. MY CD57 came back at 8, and I also tested positive for Anaplasmosis. In 1992 I had a bizarre rash on my thigh and got sick with "the flu" shortly thereafter and never recovered, so everything seems indicative of LD even though I was diagnosed as having Chronic Fatigue Syndrome for the last 21 years. I'm a very analytical person and just wish there was a little more clarity of knowing without a doubt that I do have LD. Nonetheless, I am going to be starting the Cowden protocol as my treatment choice. At this point I feel that I have nothing to lose by trying the Cowden protocol as all of my countless efforts to overcome the "CFS" have failed to get me well. I'm just kinda stressing about all of this right now.
Posted 7/22/2014 8:54 PM (GMT 0)
Hi Goldengirl,

You will find that many people in your situation will struggle with that same question, "Is it really lyme?" with OR without a positive test results. Though your results are inconclusive - follow your gut instinct. It sounds like you have a plan.

The positive anaplasmosis test would certainly make lyme disease more probable. Hopefully, with treatment - you will get better and only when you really start to see some changes will you probably get your answer as to whether or not it is lyme 'for sure.'

We have a fair amount of users using Cowden with success so I hope it works for you. Good luck!

~beth
Posted 7/22/2014 11:02 PM (GMT 0)
Golden, you are right. You have nothing to lose. If the medical community isn't helping you then your only option is to help yourself. Try not to stress too much - it can cause your symptoms to worsen. Persevere and you may see some good results.
Posted 7/22/2014 11:30 PM (GMT 0)
Oh boy, does your story sound familiar! I remember that struggle all too well. Once you get your first herxheimer reaction (die-off) from doxy and/or Cowden, it will quiet any suspicions you may have. Dont worry though, its a POSITIVE sign that it's working! I have been on the Cowden Protocol since January 21,2014 and have seen many amazing results! Three months of IV doxy and ceftriaxone, on the other hand, did nothing for me. Just know that with Cowden, it can take up to 3-4 months or so to really see results. I went from not being able to go out places with any kind of stimulation (light/sound/motion) or even drive for nearly a year to finally being able to start doing those things again around the start of month 4. I found that I went through sometimes 4-8 weeks of "plateauing" and seeing little results before I would get a big breakthrough. The cyclical nature of rotating the herbs in that protocol has a lot to do with that, in my opinion. I wish you well in your recovery- It sounds like you are already on your way!

Post Edited (lymieivy) : 7/22/2014 5:41:27 PM (GMT-6)

Posted 7/23/2014 5:27 AM (GMT 0)
I would like to know more about this Cowden protocol. I am on my 2nd round of abx. Have seen slight improvement s. I also struggle with the need to know for sure I have lyme but like you my igenex was weak positive, eventually tested positive for anaplasma and mycoplasma. So that plus a cd57 of 55 I decided I need to accept and move forward with treatment. But it is a constant mental battle, like you I am analytical and when I have a bad petiod I start to doubt. I would like to know more about cowden. Why did you decide to try that? Did you use or consider antibiotics? I really dont want to be on these antibiotics.
Posted 7/23/2014 12:56 PM (GMT 0)
Roxie, you will likely find this link helpful: www.nutramedix.ec/ns/lyme-protocol

And you can use the search feature here on this site to look for more threads where members are talking about using Cowden. Just be sure to enter the word Lyme as the first search term to keep the results from this forum mainly. As an example - as I don't feel like I explain this very well - type in the search box: "Lyme, Cowden" and you should get plenty of links to follow.
Posted 7/23/2014 1:23 PM (GMT 0)
Roxie60,

It does sound like we are in the same boat. After 21 years of living with CFS, my chiropractor asked me out of the blue if I was ever tested for Lyme Disease. That opened the door to where I am now. I've been working with an MD (she is very knowledgeable about Lyme, is discussing my case with an LLMD and is starting training in the Fall to become an LLMD herself) since April, going through all the testing. At this point she feels certain that I do have LD and suggested starting treatment. She presented many options to me including antibiotics, IV antibiotics, the Cowden protocol, Ozone therapy, UV blood irradiation, etc. In my research the last three months of the many treatment options it seemed that the Cowden protocol would be the right choice for me at this time. I am not against antibiotics, but really want to try a natural approach first (and hopefully last!). If you type in "Cowden Protocol" in the search box in this forum you will be able to read many threads that have been posted by folks who have used or are using the Cowden Protocol. Also, the website for Nutramedix (the company that manufacturers the products used in the protocol) is www.nutramedix.com. If you click on "Cowden Support Program" on the left side of the page it will show you the different herbs/supplements that make up each month of the program. As crazy as it sounds, I'm hoping to have a herx reaction once I start it because that would be the confirmation I need to prove that I do indeed have LD. I'm planning on starting on the Cowden Protocol in a couple of days and will continue to post as things progress, but in the meantime feel free to ask me any other questions you may have.
Posted 7/23/2014 4:33 PM (GMT 0)
I hope you will feel the benefits of the protocol. I wish you the best!
Posted 7/23/2014 4:55 PM (GMT 0)
Goldengirl: The difference between your Igenex Igm Neg and Igenex Igm Positive is just one of your IND bands being a +

It's very similiar to mine, but I did have a Positive IgM (Igenex).

Since your Doc feels you're positive and you have the symptoms - I think you should definitely get treatment. What have you got to lose? You can always change your mind down the road.

I understand how you feel, though. I have a positive test and still question it today - I say things like, "Well, it's not CDC positive", or "It's a weak Igenex positive"...etc. But, I've been treating (Buhner protocol since mid May) with antibiotics for almost three weeks, and I'm pretty sure I experienced herxing.

Be patient, give it a chance to work, you've got nothing to lose.

Good luck!! :-)
Posted 7/23/2014 5:02 PM (GMT 0)
golden,

from: another discussion:

"Hi Ali, Band 41 just means that your body is making antibodies against a protein that's found in the flagella of ALL spirochetes: Lyme, syphilis, dental spirochetes, etc.

However, Band 83-93 is very very specific for Lyme! IND means that there are Band 83-93 antibodies present, just not enough of them for a solid positive. This could be because most of your antibodies are bound up in complexes attacking the Lyme bacteria, so are not detectable as they are not freely swimming in your blood stream.

That fact, combined with your symptoms, are probably the reason the LLMD says that she suspects you have Lyme.

I do hope you can get some treatment that gives you relief very soon!! Good luck!"

http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html
Posted 7/23/2014 10:08 PM (GMT 0)
Roxie60 -
Here's a link: http://www.nutramedix.ec/ns/lyme-protocol
I was on IV abx (doxy and ceftriaxone) for three months and had little improvement. LLMD felt I was a better candidate for a natural medicine. She already had a few patients on Cowden before she started me with it and she saw some pretty miraculous things happening. Nutramedix offers a financial assistance program for $105 per month (includes shipping) instead of $300+ for the products. Before i discovered I had lyme, I always took a holistic approach bc I know how sensitive me body can be.
Posted 7/23/2014 10:48 PM (GMT 0)
Thanks, Girlie and jcp674...your posts definitely have helped me to understand the results a little better, and thanks for the encouragement also.

Lymebytes: Just wondering if you followed the Cowden Protocol per the booklet included with the first month of the protocol (as far as the number of drops). I'm planning on jumping right in and following it exactly as they have it laid out, but I know some people said they started slower because of herxing.

I just want to say also that I am so grateful for this forum. Everytime I get an e-mail saying that someone posted on one of my threads, I tear up. It's so comforting just knowing that I'm not going through this alone and that people care enough to share their experiences and encouragement.
Posted 7/25/2014 12:02 AM (GMT 0)
Goldengirl2014: I followed the booklet to a "T." I really did not have much herxing at all, or at least, no worse than I had experienced before. Around month 3, I added in a few of the Nutramedix extraneous supplements like "amantilla" for anxiety, "ezov" for emotional healing, and "Mapalo" for brain support to help me in areas that were being sluggish. I found the Mapalo to be tremendously helpful for brain issues (brain fog, memory, concentration.) They will send you a fold-out brochure of all these extra supplements you can buy when they send your shipment. I bought the ones I added into the protocol thru amazon bc it's a little cheaper. I am happy to be of help to anyone who is beginning their recovery from lyme. It is a daunting and scary place to find yourself and I still remember it like it was yesterday. When my life officially fell apart bc of lyme (had to leave my career and could no longer drive) it felt like my life lacked meaning and purpose, so in reaching out to other lyme patients in any way I could it began to give my life NEW meaning to help empower others. We are ALL in this together!

You are welcome to email me if you have questions about cowden...I know it well! haha

Post Edited (lymebytes) : 7/24/2014 6:05:38 PM (GMT-6)

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