[Ruben_1980]

Infections as a cause of MGUS?

by Ruben_1980 on Mon Jul 10, 2017 4:43 pm

Dear forum members,

I was recently diagnosed with light chain MGUS (lambda) with an abnormal kappa-lambda free light chain ratio of 0.03, with kappa in range. All tests for amyloid deposits (including SAP-scan) were negative, hence the MGUS diagnosis.

My light chain MGUS was discovered while working me up for polyneuropathy. As my poly­neuropathy developed quite rapidly (numbness and tingling in feet, hands, wrists, lower limbs, etc.) I started a gluten-free diet and daily sublingual intake of 1000 microgram methylcobalamin (vitamin B12). After a week or so my neurological symptoms almost disappeared. I did this of own accord as my B12 level was not believed to be too low by the GP, neurologist and hema­tologist (325 pg/ml). Strangely, my docters do not want to follow-up on the B12.. I am considering visiting a private B12 clinic to prevent undertreatment..

As regards the MGUS; after some research in the literature I encountered some articles stating that bacterial and/or virus infections and autoimmune disorders may cause MGUS. One of them concerns an infection with the Helicobacter pylori bacteria. This bacteria may also cause a B12 deficiency, which would make 'the circle round', as we say in Dutch I am considering to request a test for this bacteria when I see my hematologist next week.

Anyway, I've found some evidence that the following infections can cause MGUS,

- Helicabacter pylori
- Staphylococcus aureus
- Bartonella henselae
- Hepatitis B/C virus
- HIV
- Cytomegalovirus
- Herpes Simplex Virus
- Brucella
- Rickettsiosis
- Epstein–Barr virus

and I was wondering if others here may have found information about other infections, or just other evidence or perspectives that might be helpful also.

My apologies for the long post. I will keep you posted on further examinations for which I am going to push at the hospital.

Best of luck to all of you from The Netherlands.

Ruben

[Ruben_1980]

Re: Infections as a cause of MGUS?

by Ruben_1980 on Tue Jul 11, 2017 5:19 pm

In the meantime I can report that the test for H. pylori was negative (home test kit).

Further, my hematologist told me that treatment of a possible infection would not solve the high lambda light chain levels, and therefore no tests for possible infections will be scheduled.

I however encountered examples in literature where levels came down after treatment. Isn't this a good reason for further testing? I feel a bit like I am on fire, but nobody wants to do something.

Perhaps the best thing I can do right now is to stop worrying and live a healthy life.

[kvrrd]

Re: Infections as a cause of MGUS?

by kvrrd on Thu Mar 29, 2018 8:12 pm

Hello Ruben_1980,

Could you give an update on your status, please? How are your vitamin D levels?

I don't know what the endgame is with me. My doctors sure don't know either. My history:

Hepatitis C virus (HCV) genotype 3a in early 1970s, treated with alpha-interferon monotherapy 1993-94 with rapid but unsustained response, detected and resected hepatocellular carcinoma (HCC) in 2013, successfully treated with Epclusa (sofosbuvir and velpatasvir) August 2016, currently (March, 2018) HCC and HCV free, but with some kind of IgG kappa gammopathy.

I've been researching all of these things for a very long time. I had my first serum protein electrophoresis (SPEP) done in November 2016, right after Epclusa treatment. Here are the results:

November 2016

Gamma globulin 0.7 g/dL
One restricted M-spike band 0.4 g/dL (IgG kappa) migrating in gamma region.

Total serum light chain kappa of 203 mg/dL,
Total serum lambda of 55 mg/dL (so 3.7 kappa/lambda ratio),

IgA 85 mg/dL
IgG 680 mg/dL
IgM 27 mg/dL.

B2M of 4.09 mg/L.

November 2017

Gamma globulin 0.6 g/dL
M-spike down to 0.3 g/dL,
sFLC kappa 24.2 mg/L
sFLC lambda 9.1 mg/dL
FLC ratio 2.66

IgA 73 mg/dL
IgG 604 mg/dL
IgM 26 mg/dL

February 2018

Gamma globulin 0.6 g/dL
M-spike down to 0.2 g/dL,

sFLC kappa 21.5 mg/L
sFLC lambda 8.9 mg/dL
FLC ratio 2.42

IgA 68 mg/dL
IgG 589 mg/dL
IgM 27 mg/dL

B2M 4.54

[Spanish Mary]

Re: Infections as a cause of MGUS?

by Spanish Mary on Mon Apr 09, 2018 3:58 am

Hi Ruben,

I’ve been diagnosed with IgG lambda MGUS nearly 4 years ago. My M-spike is stable (11 - 12 g/L, or 1.1-1.2 g/dL), but my light chains continue to increase (45 - 87 mg/L).

My integrative doctor decided to test me for H. pylori during my recent round of blood tests and it was positive. I’m starting a course of antibiotics today and I’m very curious to see if it will have any effect on my numbers.

I shall report in due course.

Kind regards

[Ruben_1980]

Re: Infections as a cause of MGUS?

by Ruben_1980 on Wed Apr 11, 2018 3:18 pm

Dear Mary,

I understood that H. pylori requires treatment by a combination of different antobiotics, i.e. a heavy treatment. Hope you will do well.

Please keep us posted.

[Ruben_1980]

Re: Infections as a cause of MGUS?

by Ruben_1980 on Wed Apr 11, 2018 3:30 pm

kvrrd wrote:

Hello Ruben_1980, Could you give an update on your status, please? How are your vitamin D levels?

Hi Kvrrd,

When measured, my vitamin D levels were normal.

As regards my current status:

My light chain MGUS is stable (my latest lambda level test results were the lowest of four measurements in total, which was quite a relief.)

My polyneuropathy has improved somewhat. I went to a private vitamin B12 clinic with my medical file and story, and the B12 specialist said that 20% of the people having a B12 serum level around 300 pmol/l are suffering from polyneuropathy. My level was 325 pmol/l. Hence, he prescribed intensive B12 treatment with IM injections (20 shots in total). I am now in the middle of that and I have the feeling that my polyneuropathy improved and that I have a much higher energy level! So good news.

I will keep you guys posted.

Best of luck to all of you.
Ruben

[Spanish Mary]

Re: Infections as a cause of MGUS?

by Spanish Mary on Mon Apr 16, 2018 5:05 am

Dear Ruben,
I am doing fine thank you, it is a double dose of two different antibiotics and the end is in sight! I am however terribly disappointed that I will only be able to test whether the virus has been eradicated after 6 months - it's an antibody test. Hopefully it works and has an effect on my light chains before November.
Kind Regards
Mary.