Tag Archives: Epstein-Barr virus

EBV Coming Back?

23 Jan

symptoms

 

EBV Coming Back?

I have had the Epstein-Barr virus (EBV) for many years now. EBV was the cause of my chronic strep throat, mouth sores and other symptoms. For months it would feel like swallowing razor blades and it became difficult to eat or drink anything. I would get electric shocks to my face from the swollen glands on each side of my chin. Last month I finally tested negative for EBV and I did notice I hadn’t had mouth sores, a sore throat, strep throat…etc for a couple months after taking the Byron White EBV formula (can’t say if this was what helped get rid of it or just coincidence).

The past week my tongue is really sore and swollen and I felt like I stuck my tongue on a 9V battery there was a big shock that happened one day.  My throat has been sore for about a week also and I am starting to think my EBV is back. It was fun while it lasted to have a few less symptoms.

LLMD Search

The hunt for a new LLMD isn’t turning out so great. The one lady we found about an hour and a half from my house is only a neurologist that takes lyme patients for neuro issues. She does not help with the Lyme itself or any abx. But she is an option for all my neurological issues and I have had a few days recently where I started to lose the ability to walk again. I can tell because I look like a jelly fish when I walk on those days. My body kind of goes into convulsions while trying to walk and it takes all my concentration to take a step.

The only place I haven’t tried yet near my area is The Gordon Group which may be my only option left. I cannot handle car rides more than an hour I get too sick and have to sleep for days to recover.  I cannot afford flying out of state and it would probably make me sicker. I can see my first LLMD but they only wanted me on aggressive IV abx only even when I had c-diff and candida they kept me on it. My LLND was great but he stopped taking Medicare.

I can’t believe it’s so difficult to find a good non-lyme doctor who not only believes in lyme but they also show compassion. I received better care when I had a common cold back in the days than I do now with Lupus, FMS, CFS, Lyme, Thyroid, spinal issues….etc. What happened to the doctors who care? The same ones who cared about me before the invisible illnesses are now the ones who are rude a-holes to me. They are uneducated on many of my illnesses so they are quick to throw you out or tell you there is nothing they can do.

But I am staying positive and remaining hopeful. I will find someone who knows what they are doing. I know I will never be cured but I just want some relief and to feel a little more like my old self again. I have met some amazing new spoonie friends on Insta over the last year and they have become my family. It’s good to talk to others who have the same issues and know exactly what hell you are going through each day.

Pain Management

I will see my doctors at UCSF soon for something new. The Butrans are not helping much but only burning and itching. I was told Methadone was my next step but I will see what my options are then and update.

 

**Remember never give up. If you are feeling down on yourself and are ready to give up find someone who has is worse than you do and help them, it will make you feel better.

 

 

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New Treatment – June 2012

25 Jun

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LLMD Visit – June 2012

Took a long, exhausting car ride to my LLMD today. I was put on a new treatment as expected. I am staying away from the heavy dose of the usual antibiotics for now since I have no insurance until September and to take a break from antibiotics. I asked for herbal treatment and that is what I have received.

I will be on only one antibiotic which I have already been on before so it’s no big deal. I seem to do pretty good on herbal treatments and do not herx or have huge die off. So I hope this one works a little better and kills these bugs.

(On a side note; the visit cost me $625.00 out-of-pocket and insurance does not help cover any of these meds or the doctor visit for those unfamiliar with what us Lymies go through with insurance)

 

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MTHFR!

I also finally got the results of my MTHFR test back and it was not god news as I hoped. I have tested positive for both mutant genes but I do not have a copy of the test to share the specific genes and information just yet. I will share that information when I get a copy of the test.

 

What is MTHFR?

“Methylenetetrahydrofolate reductase (MTHFR) is an enzyme that in humans is encoded by the MTHFR gene.[2] Methylenetetrahydrofolate reductase catalyzes the conversion of 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate, a cosubstrate for homocysteine remethylation to methionine. Genetic variation in this gene influences susceptibility to occlusive vascular disease, neural tube defects, colon cancer and acute leukemia, and mutations in this gene are associated with methylenetetrahydrofolate reductase deficiency.”

 

Basically my body is and has not been producing a correct enzyme which can give me risks of getting blood clots, occlusive vascular disease, neural tube defects, colon cancer and acute leukemia. In other words I have to take 2 more pills for life along with my thyroid pill. Each mutation of the gene can be handed down from one parent each or one may mutate on its own. Or so I am told, I’m still new to this.

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Updated Treatment Plan:

Chiropractor (for herniated discs in my neck causing neuropathy)

A-BartByron White Formulas (20 drops twice per day – for Bartonella)

A-Bab – Byron White Formulas (20 drops twice per day – for Babesia)

Cryptolepis (20-30 drops per day for Babesia)

A-EB/H6 – Byron White Formulas (20 drops twice a day – for chronic Epstein-Barr virus)

Florazin (for possible fungal infection in mouth)

Nystatin (for possible fungal infection in mouth)

Artemisinin (5 days on 5 off – usual dose for parasites)

Mimosa – (from compound pharmacy -1 three times daily for parasites besides worms)

Septra DS (1 twice a day -only antibiotic I am on)

Florapro (1 per day – for my MTHFR mutant genes)

Acetylated Glutathione (1 twice a day – for my MTHFR mutant genes)

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Supplements:

Milk Thistle

Chanca Piedra

Ribose

Krill Oil

Super B Complex

B12

Vit D3

Calcium

Magnesium

Chromium Picolinate

CoQ10

Butchers Broom

Horsetail Grass

Coconut Oil

Colostrum – LD

Folic Acid

and many more…….

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You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr

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New Treatment – Herbal Tinctures

1 Apr

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