Martha's vineyard!

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Agenias
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/7/2008 12:36 PM (GMT -6)   
Hi Martha,
 I am new to this site (been on Lymenet a lot). I see that you are going to Envita in AZ? I am very interested in your progress, as I would consider going. I just read about Envita last week for the first time. I've had Lyme for 12 years, just diagnosed in October through positive WB with LLMD. I have 3 children, ages 2, 5 and 7 and I need to get better for them. I am not bedridden, but sit all day, because I have no energy. I have lots of anxiety, horrible panic attacks (this all started when I got a 'summer flu' at age 17 after visiting South Carolina in 1996). Since I've recently been diagnosed, I have not started antibiotics because I read so many long terms lymies don't do well on them.
 
If you could please e-mail me at agenias@hotmail.com , I would appreciate it. I want to talk with someone who is doing well, see about the price of treatment, ect (I'm also considering going to Germany for Biophoton treatment).
 
Thank-you,
Take care!!

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/7/2008 12:42 PM (GMT -6)   
Hi: I am curious when people write "I have had Lyme for 12 years but just got diagnosed." How do you all figure out when you first got LYme, by the symptoms?? For someone who has had various symptoms for MANY years I am curious how I can figure out if Lyme was the cause of all of it.l Thanks

Agenias
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/7/2008 1:19 PM (GMT -6)   

Hi Dowa,

 That's an understandable question! I had been very athletic, was in gymnastics, cross country, track (had just competed in the state track meet in the 4X400 5 weeks before I got the 'flu'). I had been healthy and happy, a very well adjusted 17 year old. I went on vacation to an island in South Carolina with a friend. The day we got back, I got really sick. Had a really really bad sore throat, headache, thought I had the flu. It knocked me out for about 2 weeks and even then my voice was still hoarse. I figured I was fine then, after all, the flu always gets better, right?

 

I felt better, but not 'right', I had weakness. I ran cross country, but didn't do as well. My mom (also a coach) couldn't figure it out. I kept getting worse and worse. I started sleeping more and more, my throat got sore again. My doctor said that I must have mono. Then the panic attacks started, out of the blue, I'd never had one in my life! I was sleeping 14-16 hours/ day. I missed 18 days of school in 4 months and the days I went I felt like I was dying. My thoughts turned dark, depressed. I'd never been depressed before. I tried so hard to act normal and happy, I hated what was happening to me. My teachers were great. They all thought I had mono, and were supportive. I'd been an A student. I got a D in Physics because my brain stopped working. My parents took me from doctor to doctor. Finally when I was 19 and had been sick for a year and a half, one told me that I had Chronic Fatigue Syndrome.

I started doing everything naturally that I could. Became a vegetarian, started juicing, did the raw diet for awhile. Did hot baths, enemas, colostrum, olive leaf extract, colloidal silver, grapefruit seed extract. It helped with the energy some and the panic although when run down I would get a panic attack. The depression lingered for awhile. Then I figured that since I could stand for 30 mins at a time, it was time to move on. I went to college, but only went for 2 semesters. Relapsed, then went back. Relapsed later.

I had stopped going to doctors, after all, one said I had CFS and there is no cure, diet is the only thing that helps. Well, as luck would have it, my husband and I went to get physicals at an MD who later became an alternative doc (he still writes scripts, but rarely). He did electrodermal testing. I tested positive for Lyme and Babs (you mean that is what the night sweats have been caused by all these years??!!!). I was interested, but figured it wasn't a real blood test, so it probably wasn't accurate. Hubby did not test positive for it, nor did the two other people that we know who went to this Doc. Actually he seemed quite surprised that it showed up since I am able to walk!

I had a really stressful thing happen to me the next week and threw the Lyme diagnosis under the rug since it wasn't a blood test. I got the flu again and mastitis (was breastfeeding my one year old at the time) and then cellulitis (I'm 29 years old!). Panic attacks came back, started sleeping alot, muscle twitches, brain fog.

 

saw an LLMD in CA, did IGENEX, positive IGM, Neg IGG, IFA was IND. He said my positive bands were very specific for Lyme.

 

My family has always referred to my life as BEFORE I went to South Carolina and AFTER. My mom said she felt like someone just came and took away her daughter that summer. I don't remember the rage (except for one incident), but my mom said I would get so angry, and I was always a docile child, very easy to get a long with. I also started wetting the bed at night (I had figured that my body was so tired, it wouldn't wake up to pee), had a few episodes of sleep paralysis that was VERY frightening.

Only this year did I start getting the swelling/pain of my knee. I have other symptoms too like eye floaters, heart palps, dizzyness, severe difficulty swallowing that started back in 1996, and got better with the raw diet, supplements, but came back with the relapse in 2003. I have gotten strange rashes from time to time. I'm so thankful that I don't have the suicidal depression anymore, that was just awful to be so young and having been so excited about going to college with my best friend to feeling like I wanted to die, for no reason!

 

Anyhow, that's my story. I guess after meeting my husband, it made me realize that MOST normal people don't go through the suffering I have in my life. He's heard me refer to 'when I got sick' so many times, he's so thankful that we now know what 'it' is.

 

We now have to have our children tested, as they may have it too!

 

Take care!


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/7/2008 1:41 PM (GMT -6)   
Agenias,

Welcome to the fourm, sorry you have been sick for so long!! I wish I could help you with Envita, however I have no experiance with them. I just wanted to welcome you to the forum and thank you for posting your personal story. Hope you get well soon!! :>)

Agenias
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/7/2008 1:59 PM (GMT -6)   
Hi Anoyed,
Thanks for the welcome! The more I read about Lyme, the more I felt like I'd found others who had gone through the same thing that I had, since I'd never known anyone personally. For years after I was well enough to function on a minimal physical level, I told myself I 'just' had anxiety, after all some symptoms are twitching, fatigue, difficulty swallowing. Now I wonder how many people who 'just' have anxiety, actually have Lyme!!

Take care, I look forward to meeting all here!!!

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/8/2008 1:21 PM (GMT -6)   
Agenias: Thanks for sharing your story, take care.. D

Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1335
   Posted 11/10/2008 2:51 PM (GMT -6)   
The first onset of lyme can take many forms. Some feel like they had a bad flu or in my case, I came down with Viral meningitis and ended up in the hospital for 3 days. I was 18 and spent the weekend in Cape Cod and when I returned home, I had the worst headache of my entire life. Got 104 fever and rushed to the hospital for a fun spinal tap. Well, after 3 days I got better, returned home and left for college 3 weeks later. However, even though I felt well, I was never exactly the same. I always had headaches and after 2 years started having strange symptoms that could not be explained and many doctors and 3 more years later, I was finally diagnosed with lyme and by then, was pretty far into my symptoms and unable to do much. Not everyone knows they get it, but can usually remember back to a time when they were well and then a time when they started to feel not so well.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/22/2009 12:12 PM (GMT -6)   
Agenias,
Sorry...for my delay. I just found your post today. Duhhhh. I am doing very well! I am back at the clinic now.
You are right. You do need to get better for your kids. They need you asap. It is so sad to watch the their little lives go by so fast and not be able to play...go to the beach, or even for a walk, or trick or treating! And for everything to be so darn hard to do.
I am very pleased with my treatment. Please just tap on my tiny letter to the far left to access me directly. And I am happy to answer any questions that you may have. It is weird to be able to live again..But I am getting the hang of it.
At least you have found the right place for answers healingwell. com, and the best support group that you could find.
And thank goodness your kids are well! So that is your silver linning!
Happy to help a fellow sick mommie!
My name is Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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