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Posted 7/20/2015 5:56 PM (GMT 0)
I was diagnosed with Fibromyalgia in 2001. Since then I have been tested for Lyme disease, Lupus, Hepatitis, etc.. I have not gotten better over the years. I'm looking for answers for this ongoing pan, fatigue, and other symptoms. I have ordered a complete test for Lyme from IGENEX. Any help would be appreciated. confused

Post Edited By Moderator (Girlie) : 7/20/2015 12:59:07 PM (GMT-6)

Posted 7/20/2015 6:20 PM (GMT 0)
I guess there is no one to give suggestions. Thank you all.
Posted 7/20/2015 7:01 PM (GMT 0)
Hi Op - I edited - to put a title on your subject...hope it's okay.

Give it some time to get responses...keep checking back, as this forum is full of helpful, caring people.

Igenex is the best place for testing...that's good you ordered it.
Posted 7/20/2015 7:10 PM (GMT 0)
Hi OPcounselor,
Welcome to our community!! I'm glad you found us!

We are an all volunteer site here, so sometimes we all get busy is all. Like this morning, I had to run to the Vet's office to get some pain medicine for my elderly dog, and Girlie is supposed to be on a trip. So while we do our best, sometimes posts have to sit for just a bit before someone has the time to answer it. I promise you, you are not being ignored.

The other thing is that you didn't specify what you would like help with. Understanding what test to order? Where to start on treatments/healing? Can you give us an idea on what you need help with?
Posted 7/20/2015 9:11 PM (GMT 0)
I have only been treated for Fibromyalgia. I had a Lyme test back in 2001 and the results were negative. It was right after I started feeling ill. I read the New to Lyme and it was very interesting. This is all new to me as I have only been treated for Fibromyalgia. I have started by ordering the 6050 Complete Lyme Panel from IGENEX and if I my results are positive, I would like suggestions on what to do next.
Posted 7/20/2015 9:27 PM (GMT 0)
I'm sorry that I didn't understand that you weren't sure where to even start.

Do you have a copy of your test results? Can you still get a copy of them? If they were from a Western Blot, we might be able to learn somethings from it.

For starters, I would suggest that you get your diet cleaned up (no sugar, very minimally processed foods, lower carb, and no 'fast food'), start drinking lots of water - you can add lemon to it to help alkalize the body, but be sure that you rinse your mouth throughout the day as the lemon is hard on the enamel on your teeth.

You can start detoxing too. This is something that will really help as you go through treatments because as the bacteria die off, they put off toxins that will accumulate in the body and increase your symptoms.

Next you need to find a Lyme literate doctor. It's your choice what type of medicine you prefer - what is considered 'standard' medicine (allopathic), herbal or natural treatments. Most LLMD's will use pharma abx, although some will incorporate herbs as well.

LLND's sometimes use abx along side the herbals and other natural treatments that they use to help the body heal.

We also have several at home herbal protocols that others are using here that have helped heal a lot of people. So the choice is yours, although I do have to say having an ILADS trained doctor to help guide you and help you decipher what's happen is a very valuable thing to have!

Keep asking questions!! That's how we will know what to tell you - the more specific you can make them, the better we can help you.

You need to understand that even if the results come back as negative, you could still have Lyme disease. The Lyme bacteria has the ability to hide out in our body, avoiding detection from our immune system, so that no antibodies are being produced. The tests that are most commonly used only look for the antibodies that are being produced. Even the PCR testing leaves a lot to be desired, as you have a to have a large number of bacteria in your blood at the time of the blood draw for them to show up in this test as well. And the Lyme bacteria only goes into the blood stream when they multiply - otherwise they stay hidden in our tissues, organs, and joints.


But, we know many bands on the Western Blot that are Lyme specific, so when you do get your results, be sure to post them so we can help you see what the testing really revealed.
Posted 7/20/2015 9:32 PM (GMT 0)
Thank you. I will post my results when I receive them. I have been on a LEAP diet in the past and have avoided all the foods that I tested with sensitivity. I will continue to learn from all you good people. Thank you.
Posted 7/20/2015 9:35 PM (GMT 0)
Wonderful!!! Please be sure to post any questions you have about detoxing or anything else so that we can best help you! That's what we are here for, and to get a little help ourselves!!
Posted 7/20/2015 10:06 PM (GMT 0)
Hi OPcounselor!

Traveler already provided excellent support so I have nothing to add. Anxious to see your test results. I just wanted to make a comment about fibromyalgia that might help you understand your path a little better.

"Fibro" is not a diagnosis of what is causing your symptoms as much as it is a NAME for your symptoms. In a roundabout way, declaring a name for this condition has helped legitimize it in the medical industry and has encouraged the pharmaceutical industry to develop research to find treatment for the symptoms (which are nowhere near as effective as we need them to be), but at least the condition is being acknowledged.

The trouble is, diagnosing the condition and prescribing treatment for the symptoms distracts from finding and treating the underlying CAUSE of fibro. Many of us lymees discovered that our fibro symptoms were really caused by lyme and co-infections and high viral loads. Now, that doesn't mean everyone w/ fibro has lyme but it's almost guaranteed that everyone who has fibro has a more serious underlying problem. You are sooooo smart to investigate and get down to the root of your symptoms. And this is such a great place to troubleshoot the possibility of lyme & co. with all the resources and generous posters here.

As Traveler mentioned, the current serology tests produce results that are not reliable. The main problem is that they rely on a well-functioning immune system. For various reasons, my guess is yours is under functioning, or you wouldn't be feeling so awful. You might want to consider "provoking" a more accurate IGeneX response by boosting your immune system for a good 4-5 wks before you get the blood drawn for the test. This provides support for your immune system so that it can produce enough antibodies for the test to read, creating more accurate results.

Here is more info about that:
www.healingwell.com/community/default.aspx?f=30&m=3456121

-p
Posted 7/20/2015 10:14 PM (GMT 0)
Thank you so much P! I will start on the Olive Leaf Extract immediately. I just ordered the Complete Lyme Panel from IGENEX today. This will give me time to get the Olive Leaf Extract built up in my body for a more clear result. Thank you for the information!
Posted 7/20/2015 10:53 PM (GMT 0)
Hi OP, just wanted to share my experience with Olive Leaf Extract, which is also a very potent anti-viral. Since many of us also have issues with viruses, you could be in for a monster herx if you start pounding them back too quickly.

I took OLE as an antiviral and was good starting out on 1 pill 3x daily but when I stepped up to 2 pills 3x daily, I was herxing for a week and I mean missing several days of work type herxing. But using a more gradual approach I was able to work up to 6 pills a day. For what it's worth...
Posted 7/20/2015 11:11 PM (GMT 0)
Welcome OP
Once I realized what I was dealing with was Lyme I went straight to an LLMD. My first IGENEX test came back with a few bands positive. While waiting for those results I was put on two abx. We retested 6 weeks later and I was CDC positive.
I was only a year and a half from infection to testing. If you've been 10 plus years the suggestions above are not only wise but will can spare you the frustration of a negative result.

When you're ready for your blood draw make sure you read IGENEX's instruction sheet. The kit has to be shipped before noon on Wednesday or something like that it gets to IGENEX before they close for the weekend.
Posted 7/20/2015 11:11 PM (GMT 0)
Thank you for the info Ziege! I will start slow!
Posted 7/20/2015 11:13 PM (GMT 0)
Thank you jrpsf for the info!
Posted 7/21/2015 12:49 AM (GMT 0)
Hello OP

Mercury in Silver fillings can cause those symptoms as well

I've had two friends of friends come to me because they were so exhausted that they couldn't work anymore. They had a tick bite. All I did was suggest that they try taking Samento, a natural antimicrobial, and in less than a week they were feeling great.

Pharmaceutical antibiotics can do a lot of damage to your immune system and you need a doctor to get them. Outiside of a rare sensitivity to it, Samento can help you right away if you do have Lyme, if you don't have Lyme or anything else that it can kill you should feel nothing at all and it will pass harmlessly through your body.

Outside of a herx affect, you should feel better soon and be able to research the heck out of this stuff and the other herbs. You can order it online and start slow, maybe even as low as one drop twice a day.

Good luck, Dan
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