Archive | January, 2014

EBV Coming Back?

23 Jan



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.




Quick Update – Medical Records & Butrans Patches

10 Jan



Since the passing of my LLMD I was worried about all of my tests that were supposed to be discussed with me at my next appointment, my medical records and if I can still go to that medical center. My mom called the office and there was a message saying “do not leave any messages”. After calling around my mom found out that my medical records are in probate since the doctor did not will any of her records. So I will not be able to get a hold of them or my test results. Lab Corp said they cannot mail me the results and one of my doctors said he probably will not be able to get the results either.

My LLMD was a genius and she knew just by glancing at test results if you had something wrong. She sent out for genetics testing and other test I am afraid no other doctor will know much about or care about. Like testing the T3 (thyroid), only my LLMD seemed concerned with my T3, my PCP said it was mot important to test and refused to test me for it. I hope I can find a new doctor who is as smart and understanding as my last LLMD.

My Butrans patches have been burning my arms now for 2 months. I have burn marks all over my arms and chest. At first they did not burn but now it seems I can no longer tolerate them on my skin. It’s not the adhesive part on the outside but the inside/middle section where the drug itself is applied under the patch. I am going to visit UCSF soon to most likely get Methadone. I don’t really want morphine injections so I think Methadone is my next option. I think I have tried almost every pain killer there is but noting seems to help all my illnesses.

My CFS, Lupus and Arthritis are flaring up so it’s off to my warm bed with my heating pad and BioFreeze for now…..


I hope you all are doing better and finding answers. Don’t ever give up we are all in this together and giving up is not an option. Keep up the fight and  hope you find a reason to smile today.