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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

High kappa lambda ratio, history of Lyme

by dmaotn79 on Fri Jul 22, 2016 5:45 pm

Hello all,

I really appreciate the incredible depth of knowledge here in this forum.

I am seeking insight in to my recent lab result. I am awaiting referral to hematology but my situation is different than a typical course, I think.

My recent SPEP test showed only abnormal serum light chains. My IFE and PE serum are normal with no M-spike. The IFE shows a "normal imunofixation pattern."

Kappa at a level of 39.52 mg/l,
A normative lambda 17.89 mg/L
With an abnormal ratio of 2.1.

IFE numbers:
Alb - 56.2% - 3.8g/dl
Alpha 1 - 3.5% - .2g/dl
Alpha 2 10.3% - .7g/dl
Beta 15.5% - 1.0g/dl
Gamma 15.5% - 1.1 g/dl

Test was done to chronic polyneuropathy, mostly sensory, with history of chronic (meaning I was sick for 2 years with chronic migrating nerve pain following a tick bite, but no antibiotic treatment until 2014). Confirmed with labs, Lyme and Bartonella with all the listed neuro symptoms.

I made a 60% recovery until recently when stopping antibiotic after a year, my memory has become profoundly worse as has my ability to stay awake without medication. Nerve pain returned and more numbness. On antibiotic again with about 50% improvement but not cognitively, that seems to be worsening. So they were trying to rule out amyloidosis, that's why the test was ordered.

I welcome any all thoughts.

dmaotn79
Name: Dmaotn
Who do you know with myeloma?: I have low high kappa and ratio
When were you/they diagnosed?: waiting
Age at diagnosis: 36

Re: High kappa lambda ratio, history of Lyme

by Multibilly on Fri Jul 22, 2016 7:23 pm

Did you also have a 24 hour urine protein electrophoresis test? There are instances where you can have amyloidosis, but present with a normal serum immunofixation pattern. Here's an example of one such instance where the serum IFE was normal, but the 24 hour urine IFE showed the presence of an M-spike and the the telltale albuminuria that often accompanies amyloidosis.

Melmed, G.M., "Light chain amyloidosis: a case presentation and review," Baylor University Medical Center Proceedings, July 2009 (full text at PubMed Central)

If the 24 hour UPEP/IFE shows any indications of amyloidosis, then you would likely do a Congo-red test on a fat-pad or suspected organ biopsy specimen to confirm its presence. The doctor might also consider doing a bone marrow biopsy with a Congo-red test on the bone marrow sample if the 24 hour urine test results warranted it.

Let us know what happens and good luck.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: High kappa lambda ratio, history of Lyme

by dmaotn79 on Sun Jul 24, 2016 7:15 pm

Thank you for the response. Looked back at records. I have had two CBC results since November. All normal except low creatinine and BUN level 25 and creatinine lowest at 0.68.

This significant?

dmaotn79
Name: Dmaotn
Who do you know with myeloma?: I have low high kappa and ratio
When were you/they diagnosed?: waiting
Age at diagnosis: 36

Re: High kappa lambda ratio, history of Lyme

by Multibilly on Mon Jul 25, 2016 8:53 am

With multiple myeloma, you worry when your creatinine level is high, as that tends to signal kidney impairment. You also don't want your BUN level to be high for the same reason. But simple things like hydration can have a dramatic impact on one's BUN level.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: High kappa lambda ratio, history of Lyme

by dmaotn79 on Tue Jul 26, 2016 11:03 pm

Thank you.

Curious, in all my reading which is now extensive. I've yet to find anything that says that having elevated free light chains with abnormal ratio is ever insignificant. What is your experience? Hoping I have more choices available to me other than that between AL amyloidosis, multiple myeloma, MGUS, or light chain deposition disease. Everything touts the serum free light chain assay as super accurate.

I don't seem to be asymptomatic. My appetite is poor. I get odd bruises that last a long time. The ongoing neuropathy despite lots of antibiotics treatment for the Lyme / Bartonella. My memory is terrible. Can't stay awake during the day without 250 mg of Nuvigil (armodafinil).

Anyhow my question is: Is it ever a meaningless lab finding?

Awaiting small nerve biopsy for amyloids and/or demylenation. Referral to hematologist upcoming.

dmaotn79
Name: Dmaotn
Who do you know with myeloma?: I have low high kappa and ratio
When were you/they diagnosed?: waiting
Age at diagnosis: 36

Re: High kappa lambda ratio, history of Lyme

by Multibilly on Wed Jul 27, 2016 7:50 am

The question is whether your elevated free kappa and ratio are monoclonal or polyclonal. You already indicated they aren't monoclonal since you had a normal immunofixation electrophoresis (IFE). That likely eliminates most forms of MGUS and multiple myeloma from consideration. So, that likely leaves you with a polyclonal increase in your kappa due to infections or inflammatory conditions (Lyme disease?) that your doc would need to sort out.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: High kappa lambda ratio, history of Lyme

by dmaotn79 on Sun Aug 14, 2016 11:59 am

Update: small nerve biopsy from thigh and foot. Thigh normal, foot sent onto specialist and he found "focal myxoid changes in the superficial nerves and eosinophilic material in the deep nerve tissue." Congo red stain to follow. Should have results tomorrow. What does this finding mean in negative for Congo red? Anyone? I have learned so much but have about hit the wall on this one. I know that it means some fibrous and protein stuff where it's usually not. That's as far as I can get.

dmaotn79
Name: Dmaotn
Who do you know with myeloma?: I have low high kappa and ratio
When were you/they diagnosed?: waiting
Age at diagnosis: 36

Re: High kappa lambda ratio, history of Lyme

by Multibilly on Sun Aug 14, 2016 2:00 pm

The Congo red stain test is used to test for amyloid deposits. You want the test results to be negative. If the test comes back as positive, then it would suggest a possible diagnosis of amyloidosis.

As far as what the biopsy finding means in the absence of amyloid deposits, I haven't a clue. Sounds like a good discussion to have with your doc.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: High kappa lambda ratio, history of Lyme

by dmaotn79 on Mon Aug 28, 2017 3:35 pm

After negative testing for malignancy and negative biopsies of my abdominal fat, small nerve, and colon with Congo red for amyloidosis. I underwent further treatment for Lyme and Bartonella with IV antibiotics and have been tested every six months. My free kappa numbers decreased, but remain a little high and now my lambda is low and the ratio has gone up.

Current numbers are

kappa at 2.03 mg/dl (ref 0.33 to 1.94);
lambda at 0.41 mg/dl (ref .57 to 2.63),
Ratio at 4.95.

Thoughts?

Thanks.

dmaotn79
Name: Dmaotn
Who do you know with myeloma?: I have low high kappa and ratio
When were you/they diagnosed?: waiting
Age at diagnosis: 36

Re: High kappa lambda ratio, history of Lyme

by dmaotn79 on Wed Apr 18, 2018 4:46 pm

Hello everybody,

I have had high kappa light chains for some time, almost 2 years now. Currently the kappa light chains are at 62 mg per liter and the ratio is 3.94. I had been getting colds constantly for 6 months. My doctor tested my immunoglobulin levels and it came out that I am IgA and IgE deficient and high in IgG subclass 3. I have an appointment coming up with an immunologist, but not for another month, and information is scant on on this combination of factors, so I am curious if anybody else knows anything.

dmaotn79
Name: Dmaotn
Who do you know with myeloma?: I have low high kappa and ratio
When were you/they diagnosed?: waiting
Age at diagnosis: 36

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