What To Do If You Think You Might Have A Borrelia Infection - A letter from Dr. Tedone with information on testing for Borrelia bacteria
Dear WFND Subscribers:
There is anecdotal and laboratory evidence that ALS, MS, and perhaps some Alzheimer disease are caused by the borrelia bacteria.
Medical science has a difficult time detecting the borrelia bacteria. This has been documented by many people with ALS (pALS) initially testing negative for a borrelia infection to rule out Lyme disease, but then testing positive in late stages of their disease.
There is a host response to the borrelia bacteria which is a lowering of natural killer (NK) lymphocytes in response to the borrelia infection.
Who should be tested?
If an individual has a neurological deficit or cognitive impairment of unknown cause, testing for NK lymphocytes will indicate contact with the borrelia infection, and can be used to justify treatment for the borrelia infection. This approach is much more acceptable than watching and waiting while the individual continues a downhill spiral.
Where can I be tested?
To my knowledge, the test is only done effectively by one laboratory in the United States, Lab Corp. The test code is # 505026 and the name is HNKI [CD57] panel. The cost is $75.00. The test is time sensitive and must be performed within twelve (12) hours of specimen collection, so it should not be done on a Friday. The blood needs to be placed in a lavender top test tube.
What information will be indicated in the test results?
The normal range is 60-360 ul. If the result is below 60, then treatment for borrelia is indicated and should be discussed with your treating physician. There is no guarantee if the test is normal that one does not have a borrelia infection. It may be that the infection is in its early stages and has not depleted the NK lymphocytes below the normal level. Once treatment is started, its effectiveness can be determined by an increase of the NK CD57+ above 60 ul.
HNK1 (CD57) Profile
Test Number: 505026 CPT: 86356; 86357
Specimen Whole blood
Volume Fill tube(s) to capacity.
Container Lavender-top (EDTA) tube and yellow-top (ACD-A) or (ACD-B) tube
Collection Invert tube 8 to 10 times immediately after collection. To preserve cellular viability, collect specimen so it will arrive in the laboratory within 48 hours of collection. Indicate date and time of venipuncture on the tube(s) and on the test request form.
Storage Instructions Maintain specimen at room temperature. Do not freeze or refrigerate.
Causes for Rejection Specimen refrigerated or frozen; clotted specimen; hemolysis; contamination
Use Monitor the CD57 lymphocyte subset in individuals with chronic Lyme disease
Limitations This test was developed, and its performance characteristics determined, by LabCorp. It has not been cleared or approved by the US Food and Drug Administration (FDA).
What should I do once I have the test results?
As stated previously, a normal test does not rule out a borrelia infection and should be repeated in 3 months. Once the test is performed, we ask that the results be forwarded to us so we may collect data on the value of the test in detecting a probable infection by the borrelia bacteria.
Receiving follow up test results, information on the treatment modality used, and the date of onset of the symptoms will help us to determine which treatment is most effective.
What if I do not live in the United States?
A problem exists that those who do not live within the United States as they may not have access to this test. I would ask that they email Shannon, Kathy Shannok@LabCorp.com to see if she can advise you on how you might be able to make the test available to you either through Lab Corp or a similar laboratory in your country.
There is one further test that can be performed it is called a thermogram. Those who are immune compromised indicating that their body is fighting off an infection will have a cold spot on the thermogram on the back of their neck at the junction between the cervical and thoracic spine. This test is readily available in most parts of the world and is not invasive.
How can my results help other pALS?
If you have the test done and do have a cold spot in this area, please notify me because I am collecting data to establish this as a diagnostic means of detecting a bacterial infection. This finding coupled with the clinical picture will give us a basis for instituting treatment for borrelia.
Vincent M. Tedone MD