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Just received positive Lyme results-HELP PLEASE

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Posted 8/23/2012 4:37 PM (GMT 0)
Hello everyone,
I've been very sick for over a year, was diagnosed with dysautonomia/POTS, but I continued to search for an underlying cause. I went to a LLMD and just received my Igenix Western Blot Results, the IGG and IGM were both positive by Igenix Standard:
IGG
31IND
39+
41++
IGM
31++
41+
83-93+

Is this definitely indicative of a Lyme infection? I don't know how to interpret each strand.
I am in shock! I have the symptoms of Lyme, but thought that this was probably just a long shot and something that should be "ruled out".
I can't get in for a follow-up w/ the LLMD until Sep. 17. What in the world do I do in the mean time? I'm severely ill w/ pain, vision changes, tingling, GI problems, lightheadness, debilitating fatigue, exercise (even slow walking) intolerance, and a variety of other odd symptoms.
I looked at the detox page. I have started w/ Hydrogen Peroxide/Epsom Salt baths. I will start with a lot of Lemon water.
What should I expect as far as antibiotics and other treatments go? I am going to have to completely trust in my LLMD because my other docs. would not take me seriously at all when I just mention Lyme Disease.
Can I recover, at least partially, from this? Will I be able to function and have a life again after treatment? How hard is treatment going to be? How long will antibiotics be given? Will it be through IV?
Sorry for so many questions! I feel lost and afraid, but hopeful that I will be able to heal and get some symptom relief. I'm just so very ill right now.
Thank you all!
Posted 8/23/2012 6:15 PM (GMT 0)
Hi. Welcome to the forum. I can't answer your questions about test results, but I did want to say hi and to answer some of your questions. There are a lot of treatments available for Lyme disease and coinfections. In my experience, the treatments alleviated a lot of symptoms and helped me live a more normal life. Even though it's a shock to get this diagnosis, maybe you feel as I did that thank goodness finally there was a diagnosis that explained all of the symptoms. And there is something to do about it.

There's good information on this site for people newly diagnosed. Dr. Burrascano's diet and other information were very helpful for me. It sounds like you have a good start doing things to help yourself. Because it helped me so much, I'd highlight the idea to not eat sugar. Even if you aren't on antibiotics yet, sugar creates an environment conducive to bacteria and that's not desirable.

I'm still getting treatment. So far it hasn't been IV, it hasn't been difficult as long as I am careful to follow the right diet, and I definitely am doing better than I was. The question about how long you may be on antibiotics depends on if you have coinfections, how long you've had Lyme, what strains and how many - no way to know. I'd just say, from my own experience, find a LLMD you can work with and follow the treatment plan. I was feeling better for about a year and decided to try getting off of antibiotics against my LLMD's recommendation. There were terrible things happening in my life and I just couldn't deal with the careful diet and doctor's appointments. It took a few months, but I had a total relapse. Some of us have to learn the hard way.

You ask if you can recover - why not go forward believing you will? I tell myself that every day.

Maybe your LLMD's office can get you in sooner if you explain to them how sick you are. If not, maybe they at least have suggestions of things you can do till then to help you feel better.

Glad you are here!
Posted 8/23/2012 6:21 PM (GMT 0)
Thanks so much Willowrose! Yes, I am quite relieved to finally know what's causing this. I've been ill for about 16-18 months. You are so right, it's important to remain positive! Thanks for your advice and the information. I have already significantly changed/improved my diet, as I thought that this might be an autoimmune disease, but I will take sugar out even more. Also, have you found a probiotic to be helpful?
Posted 8/23/2012 7:08 PM (GMT 0)
Yes. Probiotics help your immune system and also, once you are on antibiotics, are especially important for maintaining good intestinal health. Florastor is a good one. I've seen it at Walgreens or CVS, and I've ordered it through Cost-Co in the past. Also, the ones I get from my LLMD are Klaire Labs Ther-biotic complete. That one has a lot of different species and is very potent.

When I was first diagnosed the Dr. Burrascano information was very helpful for me to understand what I was dealing with and what to do about it. There are also other Lyme support groups online you might want to check out. I liked finding out as much as I could from as many sources as possible. And, I found a local Lyme support group that meets once a month. It's helpful to meet with others face-to-face to talk about what's on our minds. I found that group by Googling Lyme Support Group and the area in which I live.

A book I read early on was "Cure Unknown" by Pamela Weintraub. It's written like a novel, is an account of her family's struggle with Lyme disease, and is full of information. Things have probably advanced since the book was written but it could still be helpful in gaining insight about this disease.

Now that you know what is causing your symptoms, you're on the road to a better life. I hope you will be able to get some help from your LLMD before the September appointment date.

Rose
Posted 8/23/2012 7:32 PM (GMT 0)
Hi Mystery,

Well Congratulations??!!??

It is good to have a clear diagnosis, honestly! The strands that show positive on your test are particular to Lyme, so it is quite clear.

It would be hard to say what your treatment will be. LLMD's have differing approaches and they tend to design your treatment as they go along, according to how you respond to treatment.

What you can expect is to get your health back when you are all done. It will be a lot of work and you will discover new things about yourself and your strength of purpose.

Now what will help you the most is for you to become as informed as possible about Lyme. The more you know, the better a patient you will be. All the info and controversy is overwhelming, but being well educated can take the scary out of the whole healing process. So start with our "New to Lyme?" thread and carry on from there. Let us know about any questions you have.

It would be good for you to use the time before your appointment to start working detoxing into your routine, clean up your diet, and generally boost your immune system. For the latter, vitamins, supplements and probiotics are a good start. Another good thing to do would be to take a good hard look at your life and figure out how to simplify things, how to remove all stress, and identify who can help you when you need it (Like someone who can get you good, healthy food when you need it but are too tired to fix it yourself).

What you can absolutely count on is that we are here for you. You never need to feel that you are alone in this battle; there is a wealth of experience and caring here.

So this is like a marathon or a mountain climb -- one step at a time. Of course, I think people who run marathons or climb mountains actually wanted to do this in the first place!!

Take heart, Mystery, you will get through this and be well again.
Posted 8/24/2012 12:16 AM (GMT 0)
achievinggrace, thank you so much for your advice and encouragement. I have started detoxing today, bought a probiotic, and I'm starting my research :o). It's wonderful to know that I can come here for support and to get answers to questions. Thanks again!
Posted 8/24/2012 1:43 AM (GMT 0)
Hi.I'm Shelley from AZ. I was dx with Fibromyalgia in 2007:CFS in 2010.A friend in PA who had the same symptoms begged me to be tested for Lyme. Out here there was only one LLP. He used lab core and mall of my lyme and co-infections came out neg. But, under the microscope I have a malaria-like parasite called Protomyxzoafl1953. The Dr starts me on Doxycycline 100mg 2x/daily immed as lab result tests for Lyme Disease are highly unreliable. LOTS of false neg. Lyme literate Physicians use labs and clinical symptoms (past and present)to make the diagnosis. The infected tick is like a garbage pail. It carries along with it other co-infections that may be even more virulent than the original lyme bug. Your LLP will go over allyour Igenex test results and what they mean. You may be tested again for co-infections. I went back to PA and got a consultation with a LLP where my symptoms began .I was retested with IGenex labs and still came out neg by the center for disease control standards, but had results similar to yours showing key strand activity.I am following a Lyme diet(Burascanno's)taking Natures way acidophyllis 4tabs at once(must wait at least 2 hrs to take your antibiotics) NO MAGNESIUM SALTS/SUPPLEMENTS (the bugs love it), get body temp way up everyday in hot tub or hot bath...the bugs hate heat and read the books that the previous reader suggested. Please don't panic. Praise the Lord you have a diagnosis and a lyme literate Physician. I'm new at this too. shelleyaz
Posted 8/27/2012 1:02 AM (GMT 0)
Thanks Shelleyaz! Thanks for the info. I looked at Dr. Burascanno's info., it's very helpful. I appreciate your support and reminder to not panic :o)! This is scary stuff, but I am beyond relieved that I know what's wrong now!
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