In hope that this helps....

Five and a half years ago, I got sick. Really, really sick. Doctors couldn't put the pieces together. First, I was diagnosed with EBV and given valtrex and sent home. The problem is that I never got better. My health was like a yo-yo. Somedays were okay where others were horrendous. I have spent what feels like a lifetime in the comfort of my home in bed. This is not by choice. I have been messed up...physically, cognitively, emotionally, virally.

Depressed. Frustrated. Tired. Mad. In pain. Crying. Pitiful. That was me. And, somedays I still am that girl. Am I better? Somewhat. I don't know what 100% feels like. But, I'm going to do my best to get there.

Here is what has helped me:

I recently came to the conclusion that one of the reasons my body is in pain is because my muscles aren't getting nutrients to thrive. How I got to this place is a very longwinded story but simply, it was 'normal' for me to not be 'regular'. My stomach always ached. My appendix was removed. I thought is was other "stuff". Two weeks ago, I went on a LEAKY GUT protocol and I'm kicking my own ass that I didn't do this in the beginning. Autoimmune health is reliant on a healthy digestive system. It doesn't matter how clean, how organic, how plant based you eat. If your intestines are injured and you are continuing to damage them with grains & such...the good food can't be absorbed. Please hear me out....and START HERE. There is tons of information online and the experts can explain it better than me.

I am seeing daily improvements and I haven't needed to take any Tylenol/Aleve for pain since following this protocol which is honestly miraculous. Bone broth, high levels of probiotics, L-glutamine and a powder called GI-revive and NO GRAINS, NO DAIRY, NO EGGS. They all cause turbo inflammation. Please.... give your guts the strength to heal so it can do its job.

If you are brave...drink aloe juice. No whining. Yes... its horrible. Just do it.

Second, I recently saw Dr. John Chia in Torrance, CA. He diagnosed me with having extremely high titers of 7 different enteroviruses (Cocksackie, Echovirus and the bacteria c.pneumoniae). He put me on EQUILIBRANT. This natural antiviral is available online and in his office for about $35 for 90 tablets. If you are having issues breaking the viral cycle...again, START HERE. And, do not be deceived because it is natural. Ohhhhh myyy goddd. This kicked my butt. The viral die off was crazy. It made me delirious & couldn't find the words to speak. I ran a low grade fever, had even larger swollen lymph nodes and night sweats. I developed a pain in my hips that is indescribable. It went away after 3-4 days but it was very intense. Now that I'm used to supplement, I tolerate it much better. Again, there are a lot of reviews online. Just...GO EASY. I started with 1/4 tablet and that week was spent at home. More is NOT BETTER.

Third, MMJ. I take a high cannaboid capsule called Goldtabs at bedtime and 1/2 of an Ambien, which is now the only pharmaceutical I take on a daily basis. Curiosity started after reading about how mmj is a viral killer. Ideally, I would like to grow and juice it but I live in a neighborhood with too many kids and it's not worth the risk.

Other daily habits that I believe have helped:
Swishing mouth with coconut oil (Don't spit in the sink)
Liquid food grade hydrogen peroxide (Available online...just a few drops in water.)
Saline neti pot in shower (virus loves to hang out in the sinuses)
Hot epsom salt baths
Green, organic juice. I have learned to love it. (invest in a juicer if possible....worth its weight in gold)
Yoga. Walking.
Get a hormone panel.
Get a blood food allergy test.
Clear the junk out of your life (clutter, dramatic friends and family. Its toxic.)
Weekly vitamin B injections, if possible.
Staying focused on 'healing' and asking myself before eating if the food Im consuming is true to this focus
High Probiotics (Non Dairy)

Things that have NOT helped me:
Anti depressants (but, I know for some this has tremendous benefits)
Packaged, processed foods (don't believe the labels...total crap!!)
Ozone blood therapy (expensive and useless in my case)
High Protein shakes & Meats
Soy, Grains, Dairy, Sugar, Coffee, Beans and the worst for me, Eggs.
Fiber supplements
Over exertion
Crazy vitamin protocols
Alcohol, absolutely no soda



Don't give up. There are answers. Keep researching. Take care of you. You are your best doctor.

xo.
Amy
43 yr old momma, wife and fighter

Comments

Hi Amy,

Thank you very much for posting your story. I appear to be heading down the same path as you, though I am only 9 months into it so far. I will be seeing Dr. Chia in January and my stomach biopsy tested positive for enterovirus protein and dsRNA. I just had blood drawn for the antibody titer test for Coxsackie/echovirus and C. pneumoniae and I'm anxiously awaiting the results.

I was curious, did your digestive issues start concurrently with getting sick 5 years ago or did it happen later?

Also, were you given any specific treatment for the C. pneumoniae?
 
Halcyon,
As long as I can remember I had "elimination issues". Stomach aches & constipation were my normal. In my 5 1/2 year health journey, my stomach pains became worst but were swept under the rug because traditional med doctors were more concerned about other complaints and blood test results.

I believe that after years of trauma as a child, teen, and college student(poor diet, antibiotics, virus insults, food allergies) my body went into attack mode and then into complete fatigue. And, not until recently did I make the gut/health connection. I had been prescribed two different IBS medications Amitiza and Linzess. I haven't taken either medication since starting the leaky gut repair diet. I haven't needed to... which makes me very happy.

When I take medicine it is a nagging reminder that "something is wrong" so I'm not an easy patient & I'm not a good pill taker. On top of that, I'm not a big fan of pharma... and my husband happens to be a doctor.

In the beginning of this year, my stomach problems got so bad that I finally sought medical help. Three ER Hospital visits, many misdiagnosis, medicines, colonoscopy. After an a-ha moment (a very long story) I put in hours of research and started healing my biggest immune warrior...my digestive system.

If you find out you have viral issues, try going on the Equilibrant now. I'll be happy to explain how he said to use it. As it's not difficult... as long as you understand to take baby steps. Dr. Chia developed Equilibrant as his first line protocol for chronic viral/enteroviral issues. He also suggested Equilibrant for the c.pneumoniae. He uses 3 protocols and he always starts with Equilibrant.

During the 8 months I waited to get an appointment with Dr. Chia, I SO VERY MUCH wish I would have started on equilibrant. It is a kick start in the right direction. The first week was tough, but the improvements are really outstanding.

If you need anything...please do not hesitate to ask. good luck.
xo
 
I really appreciate the advice Amy. It's funny how familiar your story is to me. I ended up in the ER three times as well, with nothing to show for it except egregious bills. I was never even so much as given a misdiagnosis. None of the doctors I've seen (3 ER docs, 3 GPs, neurologist, gastroenterologist, endocrinologist, hematologist, infectious disease doc) even offered a guess, but they all offered a pill (SSRIs, PPIs, benzos, anticholinergics, antibiotics). I refused everything except antibiotics on two occasions which probably just made my stomach problems worse.

I've been trying to figure out what to do in the time before I see Dr. Chia, I really don't just want to be sitting on my hands waiting. I did order some Equilibrant and I will probably start on it as soon as I work up the courage, as you recommend. My understanding is that you start with one pill a day (or less) and continue at that level until symptoms subside, then increase the dose as tolerated up to a maximum of 6 a day over time. I've read here on the forum as well that he will sometimes throw inosine into the mix.

That's interesting that he recommends Equilibrant for C. pneumoniae as well, but I guess that makes sense as it's just another intracellular pathogen.

Thanks again for all your advice.
 
I think you and Dr. Chia will hit it off. He's a truly brilliant, passionate doctor. Come prepared with any blood tests that you have had in the past.

With regards to Equilibrant, he asked me to start of with a 1/4 tablet twice a day and to take one dose in the morning and one dose in the evening. It made me feel out of my mind, so I started taking it in the afternoon and before bed. When I ramp up the dosage I always do it during the night and it takes a 3-4 days to adjust. It's been over a month since I started and just yesterday I managed to take 3 tablets per day.

They smell and taste pretty foul. On a positive note, it seems like Im able to tolerate moving on to taking a higher dose much easier now than in the beginning. Dr. Chia was pretty relaxed about how fast the progression takes place. He leaves it in the hands of the patient. He did mention that most people can't take it before bed. But, I would rather sleep thru the side effects especially when its time to raise the dose. And to be honest, it has caused sleep disturbances (aches, pain, restlessness, fever) so if you have issues with sleep take that into consideration.

Good luck with your appointment and starting the Equilbriant.

and....I am very happy that I picked Dr. Chia. He just feels right to me.
 
@Amy1971, I just enjoyed reading your story and we are the same age, both had illnesses start with EBV, have leaky gut, etc. I am seeing a different CFS specialist and am very happy with him. I just wanted to ask you if Dr. Chia recommends Equilibriant for someone with EBV/herpes virus versus enterovirus? Also, would he recommend it if you already have any autoimmune condition (in my case thyroid.) No worries, if you do not know the answers and best wishes on your continued recovery!
 
@gingergrrl So, Dr. Chia did do the "eye roll" when we spoke about EBV. His philosophy is very unique from other viral specialist. He believes the problem starts when the body is fighting a virus and the T-cells in the white blood cells become tilted and all hell breaks loose with the immune system response.
My first diagnosis, five 1/2 years ago, was EBV and a plethora of herpes viruses. Chia was the first doctor to dig deeper and test me for enteroviruses.
From what I understand Equilibrant is not specific for one virus. It's an herbal all over immune modulator.
I will be getting my titer levels rechecked in 3 weeks and hopefully there will be a decrease in the levels. Regardless, I will continue because I have noticed markable improvements.
 
Amy,

I just got the results back from the blood work Dr. Chia ordered. I'm the proud owner of a chronic echovirus 30 infection. I was wondering if he tested you for HHV6 as well? If so, what was your titer and did he say anything about it?
 
@halcyon I just looked over my labs & dr. chia did not test for any of the herpes viruses.
He did make copies of old lab tests, which he did not look over while I was there. However, he did ask if I had ever experienced a shingles or genital herpes outbreak.
I will be seeing him October 13. If you have any questions that would help yourself or others, I will be happy to ask.
 

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