|Member Since||03/06/2010 03:58 PM|
|Last Online||05/20/2013 04:53 PM|
|A little about me:||Apparently, I've had Lyme for decades, but didn't know it. There was the bite at a campground in the 70's then a bite just after my son was born in 2003.
I was tested with the Elisa in 2009 by my Integrative Med (PCP wouldn't do the test) and came back negative. I asked the IM doc about Lyme again (since I had most of the symptoms) and he found IGenex. co-infections [clinical diagnosis of Bartonella April 2011] but definately Lyme. IGG and IGM Bands.
I've been to over 20 doctors over the past 30 years.I kept eliminating things from my life so I could keep going, but there is nothing left to eliminate... I cannot work and can only attend one event per day if I rest and nap for an hour in a dark room with my eyes closed and little noise to restore vestibular function and ease fatigue.
I've had chronic overall pain and arthritic problems, Anklysing intestinal problems,IBS, UTI's, IC...diagnosed with Fibromyalgia, inner ear imbalance/Balance disorder(also causes vision disturbances and tracking difficulties),TMJ, arthritis, degenerative disc disease (anklysing spondilosis) had cervical spine surgery...'stuck in a migraine' for months or years... But now realize that the fatigue, increasing brain fog and neurological problems etc. were from the mercury and Lyme.
I started treatment for lyme disease in May 2010 (had to wait until the heavy metals test came back with lower levels of Mercury- 6 months of supplemental chelation and it came back 'undetectable' Yea!).
Since April 2011 (new LLMD) my Lyme and Bartonella protocol does not have doxy (so I can go in the sun) or Flagyl
2011 protocol included:
Ceflosporin 2xs a day and Azithromycin (suspended for now due to stomach issues)
Plaquinal 2xs a day
Rifampin (ramping up to) 2xs a day
Diflucan once a week,
Hepatocleanse (on days not taking Zeolite HP from Cowden's)
Lymph gland cleanse -I'm supposed to be taking the Lymphomax and Bowel Cleanse, but they have chamomile and I am allergic/sensitive to it)
*Juice Plus (orchard, garden and vineyard)- ***very helpful for overall health www.ahowardjuiceplus.com
*50-100 billion probiotics (Assist Pro*/VSL#3)
*5 billion S. Boulardii
*ATP Fuel, Cognicare, Transfer factors sensitive and Transfer factors Lymplus (from Researched Nutritionals*)
*** [[Update]]October 31st 2011 I started Cowden's Protocol. This replaced all of the abx and transfer factors. I've found I still need to use lymph gland cleanse and the nutrimedix detox elements work well for me.I take the probiotics to keep candidia at bay and I will always take the Juice Plus (great for everybody) My energy is improving and my brain is starting to clear a bit.*
*Magnesium Taurate and gabapentin (for migraines)
Fibro and fatigue: *Corvalen M ribose(Great stuff!)
Rodiola R (just started- for energy)
*DHEA (Natures Sunshine F),Sam-e (Natrol/Source Naturals)and Welbutrin
*Liothyrine (T3 compounded)for Thyroid
*L- Theanine (for anxiety)
I almost made it to my 20th year of teaching.... I also have vestibular problems due to a damaged inner ear (and Lyme) which causes dizziness and vision disturbances. [but am improving!]
The neurologist and ENT referred me to a physical therapist 5 hours away who specialises in vestibular and recently helped me find a PT close to home. This really helps. Cleveland Clinic may be awful for Lyme treatment, but other departments are good. [helped me find an orthopedic PT close to home - I can even drive there now! This helps keep the migraines away]
My husband and son have had to deal with my being so weak and worn out most of the time. So, my getting well will be great for them too :-)
I'm so glad I found this site. It is so good to talk with other Lymies[a temporary name], gain information and support. Plus, I know that everything I have gone through will be turned to positive when I can help someone else.
1/1/12 We will be weaning him off of the abx soon! The LLMD told us that his treatment will be less than a year in duration! Praise God! Last appointment with LLMD will be June 13th!
3/11 Son's IGenex tests say negative but have these results:
IGM: 18 ++ (double plus) 30+, 41 IND, 66+, 83-93+
We both were diagnosed with bartonella
My Awareness Ribbons
|"Lyme awareness, support and treatment "Diagnosed with Lyme in early 2010 - had it since the 70's and bit again in 2003 just after my son was born. I'm learning all that I can, and hope to help others with what I've learned. I know it will not be easy or pleasant, but I am determined to beat Lyme. God Bless"|
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|Just sending out a quick hug to everyone. I know the struggle can really wear you down, but there is always a light at the end of the tunnel...you can and will get better...should you fall...we will help you dust yourself off and pick yourself up...You are each and everyone of you worth it...Lots of love to everyone...
|Sending hugs and prayers to you, my fellow Lyme Warriors.... Let us stand strong and united this weekend for Worldwide Lyme Disease Protest day... Let us speak the truth... the ugly, shocking, scary, unbelievable truth... Let us be heard... and Let us be healed. *hugs and prayers* purple
|Hugs to all my fellow Lyme Warriors and Lyme Supporters :)~~~~~~~
Until the site problems are cleared up. ~~~~~Please use the GREEN REPLY button instead of the quick reply box when responding to a post.~~~~~
hugs and blessings, purple
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My Recent Posts
|Finding refrigerated Probiotic...||10/27/2011|
|Gluten Free Diet?||07/19/2011|
|Why am I turning into a PSYCHO...||07/11/2011|
|Possible Lyme? If not, What?||06/22/2011|
|Son did Igenex test today||05/18/2011|
|Worried about son....||04/04/2011|
|Anything at all for Exhaustion...||04/03/2011|
|Lyme and weight loss, severe a...||04/02/2011|
|3.23.11 update from CHRISTINE/...||04/02/2011|
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