[kaajaa1221]

MGUS and Lyme disease

by kaajaa1221 on Wed Feb 03, 2016 1:14 pm

Hi to all!

My name is Karen, I am 59 years old. I was first diagnosed with MGUS in 1994. Actually told I had a polyclonal gammopathy because my IgG and IgM were both high. Bone scan clear, 24-hour urine test clear, CBC looked good. I did refuse the bone biopsy tho. Told I prolly had 5 years, so made funeral arrangements and picked guardians for my kids.

Kept going for tests for about 3 yrs at CTC in Tulsa, then decided since nothing was changing and I wasn't going to live like that and quit going.

In 2005 I was diagnosed with chronic Lyme. Western blot positive, went thru a year of antibiotics which did no good, but was kinda relieved because I thought well at least it's not cancer. Have had several bouts of deep vein thrombosis (DVT) which was consistent with Lyme also.

Now extreme fatigue took me back to the doctor, an internist, who ordered tests and ruled out multiple sclerosis, lupus, rheumatoid arthritis, etc. Still MGUS or multiple myeloma and sending me to hematologist / oncologist. She also says she doesn't believe in Lymes.

Would really like to not be looking at 5 years to live again. Trying to point myself in a direction and found this site. Pretty bummed and confused.

[Johannes56]

Re: MGUS and Lyme disease

by Johannes56 on Sat Dec 17, 2016 2:13 am

Hi,

I am from Austria. Two years ago I suffered from neuroborreliosis with complete atonic bladder. First symptom was the bladder that I did not feel any more and could not empty. Later lyme was diagnosed in the blood and CSF. Published later on together with my neurologist here:

https://www.hindawi.com/journals/crim/2015/185917/

Now, two years later I am diagnosed with IgA MGUS. We do not know if MGUS was there already before or developed later. We searched for something that caused my severe fatigue and found high IgA (while IgM and IgG are low).

My personal interpretation is that I was infected by a tick with borreliosis bugendorfii long ago. Later on I developed Bannwarth and MGUS. Root cause is borrelia that heavily destroys the immune system.

My blood count still is OK and I feel that I will not develop multiple myeloma. I am under treatment with traditional Chinese medicine herbals and drink tea from cistus incanus regularly. The probability to develop multiple myeloma is around 1% per year, so it will take 50 years to have a 50% chance, then I am 110!

Greetings, look at it positively

Johannes