Lyme Donors Rejected
IF LYME IS CURED WITH A MONTH OF TREATMENT WHY ALLOW PEOPLE TO DIE BECAUSE "PAST" LYME PATIENTS, NOW CONSIDERED CURED, ARE REJECTED FULLY FROM DONATING BONE MARROW TO SAVE LIVES?
Patty has a dangerous form of leukemia called acute myelogenous leukemia (AML). She received repeated treatments with long periods of chemotherapy over seven to eight months at a respected cancer facility. She was so improved that her physicians felt she appeared to be in remission. They allowed her to resume some of her social life and spend less time being poked and prodded.
Unfortunately, AML is a dangerous cancer, and she will need to eventually have a bone marrow transplant. It seems that to remove the cancer one must literally remove blood cells and marrow aggressively and transplant non-cancerous marrow into the body. This is just a crude understanding by a non-cancer specialist.
My understanding is that many of the acute leukemia's are dangerous, and treatment with bone marrow transplant is used in many settings to save lives and as a serious and important option. But the marrow has to be able to be accepted by the body, and not seen as a foreign set of cells. This is why matching is so important, and why I am an organ donor and feel all people should consider bone marrow donation. The only issue I might ask is about the use of good pain medication, since a bone marrow biopsy hurts, but the screen test is a swab only, and I wonder if a bone marrow collection also hurts. But I doubt the DEA or medical board would mind if you were both sedated and given plenty of fun narcotics to save a life. They have cancer in their relatives also.
IF YOU HAVE HAD LYME DISEASE AND BEEN FULLY TREATED BY SHORT INFECTIOUS DISEASE SOCIETY OF AMERICA SUGGESTED GUIDELINES, OR EVEN IF CHRONIC LYME CARE IS CONSIDERED AS "MALPRACTICE," EVEN WHEN LYME DNA IS STILL PRESENT, YOU CAN STILL NEVER BE A MARROW DONOR—WHY?
Simply, the National Marrow Donor Program (NMDP) recognizes chronic Lyme disease. They apparently reject the notion of full or sufficient Lyme disease eradication after a month of care in all treated Lyme patients.
Indeed, as part of the NMDP medical guidelines, patients with 'chronic Lyme disease' may not register.
On this point I would appeal that all physicians, regardless of which Lyme treatment duration position from the 8,000 plus articles they favor most, would agree that Lyme disease is not HIV or another possibly fatal cancer, and it should not be used to stop marrow donation.
And other tick-borne infections that are strongly emerging like Babesia and Bartonella, with thousands of articles, should also not cause a rejection of a donor.
Healers must come together and agree that super killer cancers are worse than Lyme disease or other tick and flea borne infections, and that while some may feel chronic Lyme exists, we all agree that super cancers are profoundly more serious. The National Marrow Donor Program must accept them as donors even if active, short duration or longer terms treatments were used and donors report residual symptoms.
We must agree on this to save patients, including children, from death. I would ask that those that have influence and wisdom in effecting change on this well-intentioned, but flawed medical policy, to post ways to make appeals on this matter.
Since deer are in excess of millions in some states due to lost predators that limit their numbers, and over 200 vectors exist in North America that carry deer ticks, with many people experiencing bites which are usually unreported, this is not a rare issue. With the migration of Americans to homes near non-city dwellings, following the idealistic dream of closeness with "natural" outdoor settings, many possible donors may be rejected.
We all agree that some patients do not feel better with routine treatment. I would ask that the reasons be dismissed in this situation, and that we all agree, that no matter what is the cause for ongoing suffering and complaints, it should never prevent donation. Informed consent can be offered, that might include that the patient donor was diagnosed with Lyme and treated in a manner that can be discussed. The issue here is not the best treatment, but that body load was reduced. If they had residual complaints, this can be mentioned as part of the informed consent.
The reasons for residual complaints do not matter. In a fatal cancer or other potential need exists for donation greater than a possible infection, who cares if patient donor complaints are due to Lyme, a repeat infection, inflammation residues or the other numerous reasons published or listed for why 'Lyme patients" do not feel better in a month of treatment. If it is a choice between a death cancer and the cause for residue complaints, the choice is clear—a donor over possible death.
The bone marrow registry reports this exclusion: Lyme Disease.
If you have chronic Lyme disease, you may not register.
I would ask those who oppose the notion of "chronic" Lyme disease to submit their argument(s) with their documentation and reasons to this registry. Since so many have debated chronic Lyme for over a decade, some physicians already have materials to make their point in rejecting the existence of Lyme persistence. Therefore, we are talking about a 5 minute email.
And those who do believe in chronic Lyme, who also have between 200-1,000 article bibliographies, need to say that any possible Lyme persistence, should not limit donation, if the marrow is more valuable than a possible infection.
Respectfully Submitted in the Hope of Our Unity in Saving Lives,
James Schaller, MD