posted
My family and Fiance just aren't cutting it they want to chalk up all i feel to anxiety or to me having symptoms in my head. I need to talk to someone who has had Epstein Barr (re-infected recently with chronic EBV) and Lyme disease. I don't know what is causing me to feel so bad I had been doing better but I almost feel like when my body first broke down with Lyme. The panic. The nausea. The surges of adrenaline/doom feelings that must be my adrenal system out of whack again... There has to be a correlation. The stiff neck and daily persistent headache. Been treating my Lyme since July 2008. Have seen doctor after doctor. I need to talk to someone out there who can give me hope. I'm 28 an trying to work full time an pretend I'm normal while goof through all this just trying to hang onto my home. I can't hold on much longer every day it's something new. A real, puzzling symptom where my body just feels like it's dying or "off". Such strange things happen day after day and they're real and people close to me think I'm nuts. Someone out there please be there for me. Please.
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
OMG - Clint, you need to find a support group!
My son has a lot of the symptoms you have... severe pain, nausea, panic, heart palps, much more. Too much for one person to handle alone.
Check the left sidebar - it says "Support Groups"
Sending you hugs & prayers.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm sorry you are going through this. It's hard for everyone. I don't know what to tell you specifically - just know that you aren't alone.
There are alot of knowledgable people here with experience in dealing with this stuff.
I can't say it gets easier but we learn how to cope. Some people do get well. Just take one day at a time, one step at a time...
Support groups were depressing for me. There are some nice people here, though. Hang in there, buddy!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I'm just saying people need people who support them in the real world... sometimes a keyboard doesn't cut it!
I don't know what I would do if I didn't have my DH, DD, mom, dad, and friends supporting me!
And when the ID doc told my son it was "all in his head"???!!! I'll never forget how he looked at me and said, "Mom, you don't think I'm nuts, do you?"
Imagine if I said YES????
If fiance & family are not supportive... a support group could be a place to find people who understand... and can help deal with the unsupportive family!!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
You sound like a nice lady & good mom, momlyme. You are lucky. Many of us do not have a supportive family. Even if we do - it's really trying for all involved to go through someone having a potential long term chronic illness.
I found that people in the support group just wanted to unburden themselves & go. I didn't feel very connected to the people there. I went to 2 different groups.
Maybe other groups are different?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Hell, I just got back from the ER. And, honestly, I felt pathetic in there. Just look of the lady asking me questions, like she doesn't care alone was rejecting...
I'm 27 too.. Only a couple friends still hang around me. At least they're understanding and trust whats happening. Not much they can give me in the way of support.
I live with my parents, but my Mom or Dad has never been to my LLMD with me. I just got back from the hospital, and I went there myself because I didn't want to wake them.
I had a panic attack in the car, my heart was racing, and I felt like I couldn't breathe. It was a symptom I had almost a year ago when things started to get really bad for me, but I hadn't had that happen in a while.
I'm just sharing this story with you cause I know you can relate. I feel all alone in this. People who catch a 24-hour cold get more attention then us. Only the strong are built to survive this.
Don't rely on anyone but yourself. Take as much of this into your own hands as you can. I'm getting ready to purchase my own scope and slides to examine my blood.
I'm sick of waiting around.
Posts: 829 | From MD | Registered: Dec 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
It sometimes just gets to be too much to deal with. Having EBV doesn't help anything. My son has EBV and other viruses battling his 15 year old body. He has been getting better and I often wonder if it is the antibiotics for Lyme and coinfections or the anti-viral. He takes Valtrex once a day. Within 2 months all nausea and abdominal pain were gone. His mood has improved dramatically. He still has a long way to go. I just wonder if you need to be treating more heavily. Have you done IV antibiotics? Have you seen an ILADS doctor? It is a lonely disease that is for sure. In my family there are three with Lyme and I can always call my sister with Lyme who gets me. We have had the weirdest things happen in our body for 30 years. Something we only told eachother because no one would believe it. As of recently, we know it is Lyme. ARGH! I hope you find answers and get the support you deserve.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Just want to reach out with words of support. I'm very sorry you are going through this tough situation. I was diagnosed with chronic fatigue syndrome (from EBV) for years. I also had Coxsackie and Parvo viruses. Was later finally diagnosed with Lyme and Cos. None of this is easy.
The most important thing is to go to a GOOD LLMD. This will help you to at least get a handle on Lyme and Cos. With EBV (or any virus) you just have to do the best you can to build up your immune system, detox, and eat the best quality food you can afford (organic, whole veggies, grains and some fruits. NO processed foods. Basically avoid anything that comes in a box or a bag. Time for home-made food only.) When you take the toxic burden off by eating clean food, this gives a tremendous lift to the body so it can start making repairs.
Keep reading and educating yourself. You will find answers.
And have your family watch the film 'Under Our Skin'. This will open their eyes to the truth of it all.
Wishing you the best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
For those with EBV and other viruses, you may want to consult with a homeopathic doctor...they may have remedies that can clear EBV, unlike mainstream medicine!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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lymeboy
Unregistered
posted
It is almost impossible for some people to appreciate what you're dealing with. It's a tough bridge. I don't think I'd have half the compassion that I do now before I got sick. It's tough, and with so many people calling it an imaginary disease" or just thinking it is more of an annoyance, it's hard to get someone on board with you. Try your best not to hate them for it.
There are a ton of people here that will listen and UNDERSTAND EXACTLY what you are going through. Get to a LLMD. You could likely go through a few more Dr's before it's over. It does sound like you might be undertreated. Good luck and keep coming back here.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I doubt you're dying. Of course, I'd get my doc's feedback before trusting LN members here. I don't believe it's possible to ever have someone not chronically ill understand our struggles. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Do you have an LLMD that is following ILADS guidelines?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I too suffer from EBV. My opinion on its cause is that Lyme, mercury (from fillings), or both caused the terrain issues in the stomach leading to leaky gut.
Leaky gut causes an autoimmune reaction in the form of delayed food allergies which gets the immune system occupied doing things that it shouldn't and not doing things that it should.
This clears the way for many viruses (including EBV) that were previously kept under control by the immune system to gain an advantage and start wreaking havoc now that the immune system is discombobulated.
When I first heard about food allergies, I thought, "Me? No. I don't have food allergies." But then a doctor enlightened me that the food allergies caused by leaky gut don't show symptoms/reactions immediately after eating the offending foods. And the symptoms of them are not what you'd expect. They add to fatigue and people often blame the symptoms on something else. So if you don't think you have food allergies, you may want to reconsider.
I was tested for food allergies, and to my surprise, I was allergic to foods that I ate very commonly.
I started eliminating the offending foods and cycling the others and I started feeling better. Taking antivirals suppressed the EBV and I felt even more better.
So EBV and other viruses are opportunistic freeloaders. When the body is burdened by toxicity or Borrelia, they join the party.
Getting checked for food allergies would be a wise thing to do, along with attacking the viruses in some way.
When the Lyme problem and the leaky gut go away and the immune system gets back on its feet, then the viruses will be licked.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Clint~ A friend of mine had symptoms very similar to yours. She is now 90% well. She had EBV infection as well as Coxsackie B.
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