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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13 Responses to “EBV Coming Back?”

  1. Chaffee January 23, 2014 at 12:20 am #

    I have had chronic lyme disease with biofilm infestation, epstein-barr virus, mono, herpes mouth sores, etc… for decades… and I am finally getting relief with becoming my own Dr. and experimenting with ozone therapy, urine therapy, oxygen therapy, mms, food grade hydrogen peroxide and distilled water etc…. practiced by millions in India, China and other countries. I now have my life back and have something to look forward to … because I know I am healing the causes of my dis-eases. I am so grateful I do not have to get on the merry go round to now where… with pain 24/7 … I am now free… yes… research… be ones own Dr. … be free….

  2. Sutfen Lisa January 23, 2014 at 6:48 am #

    Can you find someone that will work with a LLMD long distance?? I had a phone consultation with a compassionate and very knowledgeable LLMD. He sent his recommendations, and my GP (who has never treated the chronic form of Lyme Disease) is following them. His rates are very reasonable, especially when you consider how much time and effort is involved in finding a good LLMD, travel time, and the expense of possibly having to travel out of state for treatment every couple of months. The thing I really like about this too, is that my own Dr. is so close by and convenient for me to get to incase of any changes, reactions to medications, etc., and will be involved and familiar with what is going on, rather than having a Dr. so far away that Is difficult to get to incase of an urgent need. If you want to message me privately, I can give you his contact information, and provide you with more details! Lisa

    • 49erBry January 23, 2014 at 11:44 pm #

      Maybe I’m not sure. My GP won’t do anything any other doctors recommend. They wouldn’t even test my T3 just to save me some money. Thank you though I will see what happens with the local one then let you know if my lyme brain remembers.

  3. jeff January 23, 2014 at 8:24 am #

    have you seen an immunologist and had your igg and subclasses checked for immunoglobulin defficiency. no antibiotics will ever help you if your immunoglobulin is low.i dont know why docs never check this , but its very important and very common to be low in lyme . i have this problem and i am on igg iv therapy and it is repairing my nerves and helping my body fight back against lyme, bart, babs toxo and viruses. also have you tried using stevia. it kills more lyme than antibiotics. your story is alot like mine. you seem to be going through the same runaround i was given for 10 years . if you ever want to talk about other things to try outside the usual waste of time bottles of supplements and magic potions we have accumulated till our houses look like pharmacies feel free to contact me.

    • 49erBry January 23, 2014 at 11:47 pm #

      Yeah my IgG was borderline low I think but my IgA was low so they won’t give me any IVIG. I was going to try Myers cocktails to see if they help with anything. Glad the IVs are helping you that’s good to know.

  4. Posy Bass January 23, 2014 at 2:28 pm #

    I think Neil Nathan at the Gordon Group is fantastic. If I weren’t on the east coast I’d go there in a heart beat. Have you read about him? He’s teamed up with Shoemaker, plus he’s written a book which I think is really interesting. Anyway I would think they would do a very thorough work up on you. Best of luck! Posy

    • 49erBry January 23, 2014 at 11:48 pm #

      I will look him up thank you, I only know of one female at the gordon group so far. Hope you are feeling better.

  5. Posy Bass January 23, 2014 at 2:43 pm #

    I was curious, of course I don’t know specific addresses but you must know this, Santa Rosa is about an hour and a quarter drive from your town, not too bad. I’d give my eye teeth to be that close to those guys!! I’ve read so much of N Nathan’s stuff. Plus I think Shoemaker is a genius, which he’s on board with. It’s a horrible ride we are all on… Wishing you well!

  6. SHERRY SMITH January 23, 2014 at 4:43 pm #

    You are awesome to never give up Bry…………..I love getting your up dates and I pray for you……….You are always strong……………Im 62 yrs old my husband left me in 2006,,,,,,,,,,,,it has been a hard road dealing with Medicade and No dr’s that beleive in the disease,,,,,,,,,,,,you hang in there,,,,,,,,,,,,your Friend Sherry in kc. mo……………….Never give up……………!!! God Bless you and lead you on your journey to wellness…….!

  7. HealthyMasters January 31, 2014 at 2:58 pm #

    I know what it’s like to struggle with this disease. Ten years later I am still battling! Stay strong, its all worth it in the end! You will reach your mountain top!

    • 49erBry February 1, 2014 at 1:19 am #

      Thank you and same to you.

  8. LML February 3, 2014 at 12:58 am #

    Hi there –

    Are you in San Francisco? I used to live in Palo Alto for awhile (in Seattle now…go Hawks!) Anyways – Have you considered Pacific Frontier Medical with Dr. Harris or Dr. Raj Patal. They look really good. I believe Dr. Harris is the son of the founder of Igenex labratory. If you lived in SanFran they would be real close as they are in Los Altos. I really hope you find the perfect doctor for you. (I should add, Dr. Raj Patal is well versed in the Shoemaker Protocol as well).

    • 49erBry February 3, 2014 at 11:22 pm #

      Hi, no I am about an hour from SF area. I am a patient of Dr Harris but it was costing me too money. Dr Hynote was only $30 since she took medicare. I also get too car sick so I wanted something closer and Napa was perfect. My doc in Sacramento stopped taking medicare. I am going to the Gordon group to meet with Mara on the 27th. Thank for the info I appreciate it.

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