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Post-Lyme Syndrome

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Lyme Disease
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woodswalker
Regular Member
Joined : Oct 2008
Posts : 99
Posted 10/3/2014 5:21 PM (GMT -8)
I was diagnosed with Lyme and several other co-infections in 2008.
Luckily I found a doc in Northern NY that put me on aggressive antibiotics.
I moved very far away so I cannot see her again.

Over the last years I have had lingering difficulty with memory and concentration, fatigue, soreness... Until recently it has been manageable but lately has been much worse. My blood work confirm that everything checks out "OK"

Other than what I have Googled I don't have and other info. Wondering if anyone has and first-hand accounts or info other than what is available easily online.
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teragram
Veteran Member
Joined : May 2013
Posts : 4039
Posted 10/3/2014 5:46 PM (GMT -8)
You may have what many folks call, "Chronic Lyme Disease." You need to see a Lyme-Literate medical doctor, or LLMD.

Docs don't learn much about Lyme in medical school, which is why you need someone who specializes it in.

You probably need to speak to one of the moderators on this forum.

What state do you live in?

Margaret
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woodswalker
Regular Member
Joined : Oct 2008
Posts : 99
Posted 10/3/2014 5:58 PM (GMT -8)
Hi Margaret,

One of the issues now is that I now live in Hawaii - no Lyme literate docs here.

Guess I am looking to talk with others that may be experiencing the same thing. After all these years I question whether it is possible that I am still having symptoms
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Reba2000
Regular Member
Joined : Apr 2014
Posts : 261
Posted 10/4/2014 9:07 AM (GMT -8)
Its a very political, heated debate, but I would bet my life that the lyme comes back and needs to be treated again, whether through abx or more alternative means.
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Traveler
Elite Member
Joined : May 2007
Posts : 36542
Posted 10/4/2014 1:13 PM (GMT -8)
Actually Woodswalker, there is a doctor on the island of Maui that signed a petition in support of Dr. Joseph Burrascano - a LLMD that developed treatment guidelines for Lyme. You can email me for more details if you wish.

Even if you can't get to Maui, you could treat yourself, as many here do, with herbs. There are a couple of protocols that you could choose from if you are interested. If you would rather pursue this option, we can list the herbal protocols that we are aware of that are safe and work for many here.

As far as whether it's chronic Lyme or Post-treatment Lyme syndrome, there is no other infection (that I'm aware of) where once the prescribed treatment is finished and the patient still has symptoms, they are told not to worry about it. Each time I've had bronchitis and it didn't clear with the first round of abx, the doc's never hesitated to continue abx treatment, although they did usually switch me to a stronger abx.

Also, I was treated with strong abx for a full 12 months back in 2007 for Lyme disease, yet I only got worse. When I found out how to detox and started using herbs to treat my infections, I only treated Lyme for 12 months (for a 40+ yr infection) and had no symptoms return for 3 years - until I got reinfected this year, unfortunately.

So in my mind, there's no doubt at all, when combining my own experiences with the science that is out there to back it up, that chronic Lyme is very real and that many doctors are creating more and more cases of chronic Lyme because of ignorance or misinformation.
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LymePickle
Veteran Member
Joined : Mar 2014
Posts : 2132
Posted 10/4/2014 9:52 PM (GMT -8)
Actually there is a tiny bit of truth in "post lyme syndrome". Lyme can damage the body permanently if left untreated. It is like when you get cut... There is a scar. But if your brain fog got WORSE, and your fatigue is getting worse. Than that is from a chronic infection .
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Traveler
Elite Member
Joined : May 2007
Posts : 36542
Posted 10/5/2014 6:51 AM (GMT -8)
There is a very little tiny bit of truth in that statement as Lyme Pickle said - but the symptoms will continue to diminish as the body continues to heal. My nerve pain was only just getting to where I wasn't noticing it all the time (3 years past stopping Lyme & Bart herbs), when I got hit with it again. smhair I had kind of forgotten how bad it hurts!!!

Now, with that being said, I have noticed a few things that didn't improve with being 3 years past treatment - numb spots on my skin, lack of reflexes in my lower legs, memory still wasn't where it should be and a few other things. Although I do have to say that it was close enough that most people had no clue that I had been affected like I was.

What the docs that use that term are referring to though is that you supposedly live with that same amount of pain and other issues the rest of your life - which is not the case if you are treated properly the first time around.
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woodswalker
Regular Member
Joined : Oct 2008
Posts : 99
Posted 10/6/2014 4:40 PM (GMT -8)
Thank you all for your replies.
I am considering all options right now.
For too long I ignored the symptoms and now they are getting worse - not the smartest thing I have ever done...
Let's keep the dialog open.
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