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Lyme Disease
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Posted 5/3/2016 8:19 PM (GMT 0)
Hello all,

I've been on FeelingWell for a while but this is the first post I've had here :). I am hoping you all can help me decided if seeking out a Lymes specialist would be worth my while.

I have been sick for a little over two years now. (Maybe longer but that's when I really started having noticible symptoms)

i won't boar you with all of my story I'll just give you some general information about myself.

I started out having problems with my eyes. Blurry vision and floaters(a lot of floaters), paticularly on the left side, that kind of faded away and I didn't think much about it after that. More problems followed though about six months later I started having problems with my left arm. The muscles would contracts and the nerves would hurt. Then that started to happen on my right side as well.

That lasted for a while, a long with a bit of a hand tremor. After a few months that all subsided. After the symptoms had seemed to completely disappear for over a month they started to suddenly com back. I went from being completely normal to hardly being able to walk and developing a stutter.

I started really seeking out doctors help at this point (I had before but in a more casual way) I have had all sorts of tests run (including the basic Lymes, although not more then that).

My muscle symptoms have subsided for the most part unless I really wear myself out or I get sick. I have developed low grade fevers when I have what I call "flares". I have also started losing excessive hair and have noticed some very light skin rashes on my face and chest from time to time (seems like it comes in from being in the sun and maybe stress?) and although I have not been diagnosed I believe I have developed Raynauds syndrome (my fingers and toes get so cold even on a chilly day they hurt really bad)
I have a Nuro appointment this month, she is doing the best she can I suppose but I feel like she hasn't been much help at all.

Dose any of this sound like Lymes?
(Also sorry I don't have time to edit this much. I hope it makes sense )
Posted 5/3/2016 8:57 PM (GMT 0)
Hi JLKohl - welcome to our community!

The constellation of symptoms you have could be attributed to Lyme Disease.
And, the coming and going of these symptoms...often happens with LD.


You could order an Igenex Lab test kit...and get a Lyme Western Blot IgM and IgG for $210....and also make an appointment with a LLMD for an evaluation.
Sometimes it will take several weeks to months to get in to see one.
You can do the test in the meantime, while waiting for your appointment...and have the results ready for your appt...or you could wait until you see the LLMD and do the testing then.

Yes, your post makes sense...don't worry about that.

Because you are new here it would be helpful for you to take a look at the thread at the top of the page titled: "New to Lyme?..Start Here!" It's full of good information for those of us dealing with LD.

Don't expect the Neurologist to support the possibility that you have Lyme Disease. They usually don't
Posted 5/3/2016 9:27 PM (GMT 0)
I agree with Girlie on everything especially on the neurologist. They don't usually recognize lyme disease at all.
Posted 5/3/2016 9:34 PM (GMT 0)
Hi JLKohl -

You have great input from the moderators already - don't have much to add except one thing if you decide to test -

As you will learn, the lyme tests are notoriously inaccurate, particularly if your immune system is under functioning.

Some people get better test results by "provoking an immune response" to get your immune system to create a higher load of the antibodies the serology tests are looking for.

Otherwise, people who are suffering from lyme, which is known to suppress the immune system, can't produce enough antibodies for the tests to pick them up and the test turns out falsely negative.

My LLMD had me take olive leaf extract (it's an OTC herbal that you can find at most natural foods or health stores or order from Amazon.com) for 3-4 wks before you test. Just follow the dosing instructions on the bottle. If you happen to have an overactive or autoimmune issue, you might want to talk w/ your MD before provoking with an immune booster.

Hope this helps!

-p
Posted 5/3/2016 10:09 PM (GMT 0)
This helped me - looking at a symptom list - I went, yup, sounds like me.
Does any of this sound like you?
http://www.anapsid.org/lyme/symptoms/
Then I found this - and was shocked - this Dr.'s quiz, the results, encouraged me to discuss this with my Dr.
Well- I wouldn't do that if I did it again - unless I lived on the East Coast.
http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html
If you rate on the quiz that you might have a tick borne infection, don't wait to take right action.
Everyone's flow seems a bit different.
I began with
1. nutrition
2. researched and listened and followed through with advice here
3. added supplements
4. added herbs
5. saw a naturopath who had lyme that gave a clinical diagnosis
6. saw a chinese medicine dr. who also thought it was lyme
7. invested in an IGEN-x test which showed enough to convince me, yup, lyme.

If you want to get a test, and don't have a Dr.'s order, you can get a basic lyme panel done here.
http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

I used them and the service was great. I hired a private phlebotomist to draw the blood for me.

Good luck and welcome!
Posted 5/3/2016 10:29 PM (GMT 0)
Thank you for your replys! I have read through the introduction and deffinatly the list of symptoms and thought my symptoms fit in with a lot of it, but it can be so hard with all these neurological things :/ a lot of them seem so similar. It's all pretty overwhelming still.

I will have to look at buying my own test! I know where I grew up there were ticks with Lymes and I now live in VA were there are also ticks with Lymes. My regular doctors is pretty at a loss and my Nuro keeps trying to convince me its migraines 🙄 I was going to ask for a reference to see some one who specializes in Lymes, I think there is a doctor at the office I go to. I will do more reaserch on that.
Posted 5/3/2016 10:47 PM (GMT 0)
Good job JL! Flowing with action. Your body knows and sounds like you are doing some awesome deep listening.
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