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Posted 12/9/2014 6:27 AM (GMT 0)
Hi guys,
I've been following some posts here for a while but this is my first participation.
I'm questioning whether I have Lyme disease or not. I've been treating it under a llmd's guidance for about 6 months and am still not noticing significant improvement. I think there has been some though -my sleep and some of the tingling has lessened. But I've never really felt like I've herxed. I'm taking BYRON WHITE FORMULAS, various supplements and antibiotics Bicillin, doxy and plaquenil.
I've never had that much fatigue but have tremors, confusion, tingling, facial pain, and most of all emotional dysfunction - I find it really hard to be social!
I'm also wondering what people think of HBOT, rife therapy and hypothermia treatment.
Any thoughts would be very much appreciated because I feel so desperate to get well! I'm sure you've never heard that before :)
Posted 12/9/2014 7:07 AM (GMT 0)
Welcome to the forum.

Sorry to hear of your difficulties!

If you read the first post in the forum (see top), you will find a lot of good information.

Interestingly, not everyone herxes, although I think most people do.

Sometimes, it can be really hard to get better, especially if you have trouble detoxing, or if you have something called a MTHFR mutation, which is a genetic mutation. You can get tested for this, and then you need to find someone (hopefully your doctor) who can interpret these tests.

Even if you don't herx, it's crucial for you to detox. Again, if you read the top post/thread, you will find information on how to detox. You are more likely to get better if you do so.

If you were at all positive for any of the lyme tests, or coinfections, it is highly likely you do have Lyme. Were you tested?

Having said that, you can have negative tests, and still have Lyme.

People have widely varying opinions regarding HBOT, rifing, and hyperthermia. For me, all these treatments are too expensive, although I do have a FAR infrared sauna.

Hopefully, one of our moderators will be able to help you.

Margaret
Posted 12/9/2014 1:39 PM (GMT 0)
Good post margaret!

Welcome Eddy—glad you posted. Don't had much else to add—definitely echo the MTHFR pathway investigation. Hope you and your LLMD have some success... Low and slow is the way to go.

Please let us know how you are progressing!

-p
Posted 12/10/2014 5:23 AM (GMT 0)
Thanks! Interesting to note that herxing doesn't happen to everyone.

I have been tested and was shown to be positive with Lyme, but as I understand it the test isn't completely reliable. I can't remember what type of test it was.

I seem to have many symptoms that would indicate a Lyme diagnosis but everyone I hear of who has Lyme seems to have fatigue issues which I don't have.

I see my LLMD tomorrow so will speak to her about this
Posted 12/10/2014 2:49 PM (GMT 0)
I'm glad you are going to see a LLMD. Lyme disease presents in many, many different ways - so don't worry that you don't have the same symptoms as someone else.

The tests most commonly used for Lyme aren't very sensitive, so they miss a lot of those that are actually infected - if you tested positive, then you do have Lyme. There are very, very, very few false positives. I've actually not heard of any that were truly false positive.
Posted 12/10/2014 11:24 PM (GMT 0)
Okay, so I found the paper work from a while ago showing that I have the MTHFR C677T gene. And to my understanding the Metagenics Methyl-Guard my LLMD has put me on is to help with this.

Also, the test I had for Lyme which came back positive was the Western Blot IgM.
Posted 12/11/2014 4:13 PM (GMT 0)
A positive on the WB IgM means that you had an active infection at that time. How long ago did you have this test done?

Are you being treated for the C677T mutation? If so and you have been doing all you can to eat very well, detox and do what your doc has been telling you and you still aren't making progress, it may be time for a change. Not every treatment will work for every person, so you may need to change protocols, but there are several other established natural protocols that you could try still.

If you have to switch doctors in order to switch protocols, then we can likely help with that as well.
Posted 12/13/2014 11:38 PM (GMT 0)
I had the test done about 6 months ago for WB IgM.

Yes, I'm being treated for the C677T mutation with a formula called Methyl-Guard by Metagenics.

I've been eating as well as possible with lots of veggies and whole foods and cutting out gluten, sugar, dairy and alcohol.

I think I am improving.. at least my family is telling me so... but it is just very slow :(
Posted 12/13/2014 11:48 PM (GMT 0)
I know what you mean, I've been in treatment for 4 months so far and I am really wishing that it was already over with! LOL! But, this is a very complex infection, so it will be slow going, but stick with it!! The pay off is huge!!!

I would suggest that you start keeping a symptom journal, it will allow you to 'see' improvements easier because you can look back at how your symptoms were a month ago or whenever you choose to look back to. Here are a couple of online ones, or you can use your calendar or just write them down in a notebook:

/tbijournal.com/

www.facesoflyme.com/content/journal.php
Posted 12/14/2014 12:59 AM (GMT 0)
Following
Posted 12/14/2014 4:43 PM (GMT 0)
Also, I forgot (smhair) to mention detoxing. As these bacteria die, they put off toxins that drive our symptoms. You must detox to reduce the severity of your symptoms and help your body heal. There are some very good detoxing suggestions in the "New to Lyme?" thread that I would greatly encourage you to begin right away.
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