EBV + Lyme + CMV + HHV-6 + Hashimotos + Leaky Gut

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New Member

Date Joined Mar 2018
Total Posts : 2
   Posted 3/8/2018 12:19 PM (GMT -6)   
I was diagnosed with EBV and CMV + Lyme (5 separate infections, all with bulls-eye) + HHV-6 in 1993. Then leaky gut, disautonomia, Hashimotos, low-lying cerebellar tonsils, fibrocystic breasts, thyroid nodules. Although I have had well periods, none of them have ever gone away. Right now I feel like I already died. I have no strength or energy, and now am also dizzy and ache all over. This has been a long and exhausting 25 year journey, and at this point I am so brain dead that I can't remember anything, so it is very hard to keep on track. I have downloaded a myriad of information, some conflicting. Hard to know what is genuine...Needless to say, I don't have any support in this. I need help in figuring out what to take, what not to take; what to do, what not to do.

I am currently on Nutritional Balancing, but after 6 months I started cheating on the diet aspect, and just got back on track. I don't sleep much, wake up more tired than when I went to bed, am so dizzy I'm afraid to drive. I recently had a 60 minute intense massage and wonder if that hindered me. I also had an A-fib incident last week, which is always exhausting. My poor body! Surpassed only by my oh so foggy brain.

I do coffee enemas and saunas every morning. I take supplements: monolaurin, CoQ10, C, B-12, and 8 different Endomet Labs pills. I am eating predominantly pressure cooked veggies plus some protein. No sugar, grains, coffee, lectins. But I just seem to be getting worse and worse.

Can anyone out there suggest a priortization for me? What am I doing wrong? What should I do first?
Thanks guys.

New Member

Date Joined Mar 2018
Total Posts : 6
   Posted 3/18/2018 6:37 PM (GMT -6)   
I have many of the same infections and was diagnosed with ALS a year ago. I do not buy into that diagnosis. I started Traditional Chinese Medicine (TCM)this includes herbs, acupuncture and counseling. After a month on the herbs and a diet much like what you are eating the brain fog completely cleared. I do have speech issues and gait issues but other than that I feel better than I have in years. I am getting treated for Lyme now and plan to heal 100% If you find someone who does TCM I recommend that.


almost medfree
Veteran Member

Date Joined Jan 2004
Total Posts : 2570
   Posted 3/19/2018 3:56 AM (GMT -6)   
Sorry you're having such a hard time. I would suggest that you google the side effects of coffee enemas and if you're doing sauna, make sure you're drinking enough water so you stay hydrated.

When it comes to sleeping, because of my fibromyalgia issues along with CFS, I have to use melatonin and enough of it along with L-theanine.

Good luck to you.
Fibromyalgia, CFS, MCS, scoliosis, herniated disks, spinal stenosis, osteoarthritis, sjorgens, sleep apnea, asthma, allergies, headaches, and reflux. On a regiment of different supplements including sleep supplements. I eat nutritiously and perform prescribed stretches twice daily.

Favorite Quote:
True happiness comes not from material gain but from what we can do for each other.

New Member

Date Joined Feb 2014
Total Posts : 14
   Posted 3/19/2018 7:23 PM (GMT -6)   
I must agree with almost medfree re: coffee enemas. And, why 60 minute INTENSE massage? I think 20-30 would have done just as well - but I am no expert. Just experience.
Have you been checked for gluten allergY? can be done with blood. Usually, I have read, that Hashi's and gluten sensitivity go together. You might want to check that out. Excuse if it is in a prior post.

Do your recent blood tests claim any amount of anemia? D3 levels? Methyl form of B12? Do you have any methylation issues? MTHFR?

As for the EBV, perhaps a really great liposomal Vit C in the higher range could help? I cannot suggest IV vitamin C, for I have no real experience with administration.
I am dealing with on/off dizziness myself that I treat with homeopathic remedy of Phosphorus 30c and a cell salt #11 Nat Sulph 6X. As well as exercises for benign paroxysmal positional vertigo. Was not dxd. Just follow the procedure. **I was in the ER with severe dizziness. Was given every cardiac test. Deemed ok and sent home with a script for dizzy, which I did not fill. I was concerned it was a severe middle ear infection, which none of the hospital staff would even consider. I was presenting with a really bad sinus pain/infection. So, I doctor myself.

As for LYme, I have read that a biophoton light emitter is very helpful. Possibly do a search on that and where you might find a provider to help you.

#1 is Sleep -- I stumbled upon BLUE LIGHTS information and just out of curiosity began some of the suggestions I found on the site. I do have some amber bulbs in lamps for sundown that I purchased from Low Blue Lights site, a night lite, some yellow glasses from amazon and followed the suggestions for NO computer, TV, cordless phone in bedroom!! NONE. I went so far as to eliminate most metal (only metal is screws) in my bed. I block all light at night and noise. I even turn off or unplug all electric in my room. CELL PHONE TOO!!! My computer and cell have apps that change the color of the screen from blue to sunset-ish look. I sleep pretty well. I do get up with a poodle that needs to 'go" usually around 5-6 am. But then back to sleep we go until around 7am. Been working pretty well. I try NOT to do computer, cell or TV after 9pm. I am in bed around same time: 1030pm. If I read I am wearing orange glasses and reading by yellow bulb light. Can't complain. (Five years ago, I was sleeping two hours, up for two, back to one, up again...over and over. I was very tired) This is working for me. Sleep is so important to all of your body parts and functions. And even brain. NO EMFs. I am considering the purchase of a faraday cage netting for bed...but they are really expensive! Maybe. Some day. I do get a cell tower signal through windows...

#2 Get Moving: Try slow rebounding to help with lymph drainage. Slow bouncing. Mine is against a half wall and sometimes I need to hang on for balance. It can be for just 10 mins!! Good for bones. Good for lymphs. Dry brushing skin can help sluggish lymph drainage too. Yes. I dry brush.

I have nothing for the extra brain you have. Sorry. For pinched nerve pain -- I purchased near infrared light bulbs online that I put in light stands and use every other day for 15 minutes. WITH GOGGLES. Helps with pain in cervical neck at c-3/4/5/6 all of them are on top of each other pinching nerves like crazy. I said no to neck surgery with some type of fusion, screws, etc. (in 1996.) I do slow deep stretching to stop the verts from pinching all the nerves up there which causes PAIN and my left arm to just stop working. Lots of arnica montana either pellets or cream.

#3 Diet: I went organic and gluten free -- just for fun-- which then took me OFF five or six different meds. Just didn't need them with a change of diet. Relieved migraine frequency too. I am very low carb-ish and sugar. Sugar is BAD! But I slip here and there. Free range chick/eggs, bison, etc. Mountains of fresh greens/sprouts. Yum.

(My coffee is bullet proof. I will never stop coffee. Never. )

I filter my tap water to reduce/eliminate chlorine and other junk I don't need. After that filters I then fill the pitcher that removes ALL fluoride. Then into a little counter top Brita. I drink ALOT of room temp water. Or my own lemonade. Coffee. Organic wine on occasion.

SUPPS: I have been known to do 4-6 grams of clean vitamin c powder two to three times a week (which I now put in caps), my probiotic/prebiotic powder in goat yogurt *have GcMAF recipe and raw milk I am going to try..., IODINE -- 50 mgs every day - helps keep a small lumpy goiter small (FNA was inconclusive three times!!). Omegas - Krill Oil -- maybe twice a week. Selenium. Some zinc. tumeric, garlic, methyl b-12, half of suggested of the B complex three times a week, CoQ10, blueberry extract, apple cider vinegar drinks made with whole leaf stevia, green tea powder occasionally, many different tinctures; bilberry for eyes, st. johns wort, brain extracts, and some medicinal topical essential oils (for migraines).

I am considering taking care of my liver as if it has probs. I read that alpha lipoic acid, selenium and silymarin is the BEST trio for liver. (Burton M. Berkson, MD/PhD) Someone once told me he felt ALL probs begin with a sick liver. You never know. It's worth a try.

I am also trying to find a great meditation type class/instructor. I hear it is the best one can do to heal.

Best of health to you! smile

Post Edited (rebounder4ever) : 3/19/2018 6:51:58 PM (GMT-6)

New Member

Date Joined Mar 2018
Total Posts : 2
   Posted 3/21/2018 11:48 AM (GMT -6)   
Thanks for the replies everyone.

To rebounder4ever:
Yes, I can't eat gluten, and don't. No anemia, D3 levels low for 12 years at least, despite taking it. I take methyl form of B12. I have the MTHRF mutation.

Re dizziness...I know I have a Thornwald cyst and low lying cerebellar tonsils from a recent MRI, they can cause dizziness, but I've probably had them for a long time and had not been dizzy until lately. I've always gotten dizzy from treadmills, and can't cruise since I get mal de debarquement, so there's something in my ears/brain that ain't right! I was diagnosed with disautonomia about 8 years ago. Don't know how to fix that.

I will check out biophoton light emitters.

Sleep: I do all those protocols..have red glasses, pitch black bedroom, take 10 mg. melatonin, veg out after 7 pm and go to bed at 9:30.

I have a rebounder, but am too dizzy right now to use it.
I take lots of kelp and zinc.

Been organic for 20 years. Have sensitivity to 52 foods! Avoided them all for a year but never got retested.

The sauna I do every day is comprised of 3 near infrared lights.

I take so darn many pills a day. I have been on and off EVERYTHING, every vitamin, every mineral, every amino acid. I am totally confused and disgusted at this point.

I'm thinking now massive candida. Have starting taking GSE, baking soda and ACV.

If only America had medical care professionals! turn

Regular Member

Date Joined Apr 2013
Total Posts : 132
   Posted 7/2/2018 6:43 AM (GMT -6)   
There is a 6 month trial on a new drug that will start this month that they hope with help with this cluster of symptoms

"ME/CFS is one of a group of etiologically unexplained diseases, including:

fibromyalgia syndrome;
chronic lyme disease;
Gulf War Illness;
post-traumatic stress disorder;
atypical depression;
irritable bowel syndrome; and

Collectively, these have been argued to represent one underlying common basic syndrome, sometimes referred to as functional somatic syndrome or bodily distress syndrome."


On the site it says,
"Having successfully completed a Phase 1 clinical trial (in healthy human subjects) under FDA oversight, we are planning to test CT38 in ME/CFS patients. We believe that a short course of treatment with CT38 may be curative."

Listen to the youtubes on Dr. Ron Davis. He is our best hope to get treatment and he is 76 years old (something like that). So if you know someone with $5 million annually to spare he knows who to recruit and how to resolve this.

Post Edited (trumpet123) : 7/2/2018 10:27:36 AM (GMT-6)

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