Below is a copy of a letter I received yesterday from the Virginia State Department of Health. I am trying to get Steve's babesiosis case reported to the CDC.
Anyone from Virginia or any other state with a positive blood smear for babesia or a positive antibody test needs to follow-up with their state department of health.
If the cases do not get reported the CDC and IDSA physicians will never take us seriously.
You can file the report -- it does not have to be done by your doctor.
I am sending a follow up letter in response to the letter I received. It is my understanding that Clongen lab has multiple positive blood slides from my husband spanning several years that were frozen. Hopefully the state or the CDC can do additional testing.
I wish now I had pursued this in a more timely manner, but the real fault still lies with the hospital for not taking me seriously and not following up when they received the Clongen report on the day of Steve's death. -------------------------------------------------
Dear Mrs. Siebert
I am sorry to hear of the passing of your husband. I am also sorry to hear that you have been unable to clearly determine his cause of death.
Babesiosis only became Nationally reportable in 2011, and is still not a reportable disease in Virginia, but we expect that it will become reportable here by 2014. One of the reasons for it not being reportable in Virginia is that, thus far, tick surveys and human case investigations have turned up no evidence of Babesia microti in Virginia’s ticks, or of authochthonous transmission of babesiosis within the state.
Additionally, while national surveillance data identifies the state of New Jersey to be endemic for babesiosis, there has been relatively little babesiosis detected in neighboring states to the west or south.
A recent(2013) publication indicates that the state of Pennsylvania counted 39 smear positive babesiosis cases in the period from 2005 to 2012, but they are only just beginning to see cases of babesiosis that are clearly tied to tick bites acquired within the state. The states of Maryland and Delaware have also seen a number of babesiosis cases over the years, but relatively few cases have been seen that could be attributed to transmission within those states.
In Virginia we have seen a number of babesiosis cases (Babesia microti infections) since 2000, but all of these cases have been tied to tick exposure in the Northeastern states where B. microti is known to be endemic.
Additionally, since 2002, the Virginia Department of Health (VDH) has investigated more than a dozen other babesiosis cases reported to VDH by Virginia physicians, and so far, none of these cases have met the case classification criteria for any babesiosis surveillance case definition (although all were laboratory positive with low serological [antibody] titers, none had symptoms compatible with the illness).
Among these cases a large proportion of them were patients who tested positive for Babesia duncani (or WA1 Babesia as it was once called).
Babesia duncani was first identified in northern California, and since its discovery there have been only a relatively small number of proven cases recorded in West Coast residents. Although a commercial laboratory developed a blood(antibody) test for B. duncani more than 10 years ago, and testing by this laboratory has yielded many positive WA1 tests in persons from across the U.S., no one has ever been able to isolate B. duncani from WA1 positive patients in places other than the West Coast.
In my discussions on this topic with the CDC, they said that the commercial assay for B. duncani was developed using blood from a very limited number of proven cases, and so its specificity may be fairly low. Assays that have low specificity have a higher probability of yielding false positive test results.
More recently, the CDC has been working on developing a much more specific assay for B. duncani, and recently we obtained a sample from a Virginia citizen who tested B. duncani positive at a commercial lab and it did not confirm at the CDC.
Although Babesia microti is the only known human Babesia pathogen on the U.S. East Coast at this time, it appears to have spread to other states from its initial endemic zone in New England much more slowly than either the blacklegged tick, or its other associated diseases (i.e., Lyme disease and anaplasmosis).
However, I do believe that it is only a matter of time before B. microti is found in Virginia’s blacklegged ticks and babesiosis transmission begins to occur in Virginia.
You are probably correct in your assumption that xxxxxxx xxxxxxxx Hospital did not report this case to VDH. Babesiosis was not a reportable disease in Virginia in 2012, so they would not have been required to report it to us. However, I have been receiving babesiosis positive(serological) lab reports from commercial testing laboratories since 2011.
Most of these lab reports have had titers that were too low to qualify as “laboratory evidence of infection”, but occasionally a lab result has come in with a high enough titer to qualify, and I have passed the lab report on to local epidemiologists with the request that they do an investigation.
To date, none of these investigations have confirmed a case. On the rare occasions when we have learned about Babesia positive blood smears (i.e., microscopy positives), these have all proven to be cases related to travel to, or from Babesia endemic states.
You mentionthat your husband had a Babesia positive blood smear identified by Clongen Labs, but that this test result did not make it to the hospital in XXXXXXX. Did Clongen’s testing identify the species of Babesia in the blood smear? Also, do you know what assay Clongen used to identify Babesia on the smear (i.e., was it identified by PCR using specific primers, or by identification of the parasite through microscopy)?
It would have been good to have obtained that sample so that the CDC could have tested it. In 2012, I had a patient’s tick specimen obtained from Clongen to be re-tested by a different laboratory. Clongen had identified this tick specimen as being infected with Babesia by use of PCR, but they had only used a non-specific PCR primer, and this method could not identify the Babesia species.
When I subsequently had this specimen shipped to a laboratory with more specific testing capabilities, it turned out to contain Babesia odocoilei, a species that is carried by deer, and that is currently not known to cause human illness.
As your husband’s blood smear testing was done over a year ago, I doubt if the specimen would still be available or viable for further testing, but it would have been good if I had known about it then because I probably could have arranged to have it sent it to the CDC for further testing.
I am hopeful that when babesiosis becomes a reportable disease in Virginia in 2014, more healthcare providers will report their cases to us. This will give us many more opportunities to determine if autochthonous Babesia transmission is actually occurring in Virginia.
Sincerely,
David N. Gaines, Ph.D. State Public Health Entomologist Virginia Dept. of Health Division of Environmental Epidemiology Richmond, VA
804-864-8112 – Office
[ 10-10-2013, 03:23 PM: Message edited by: seibertneurolyme ]
Posted by Lymetoo (Member # 743) on :
Good job, Bea!
Posted by GretaM (Member # 40917) on :
Always amazes me how ticks don't like to cross state lines.... Posted by Lymetoo (Member # 743) on :
They are SOOO smart!
Posted by WPinVA (Member # 33581) on :
Bea, I am again inspired by your advocacy! Perhaps you have already done this, but I wonder if the VA Governor's Task Force on Lyme would be interested in knowing about the Health Department's utterly worthless response?
Posted by seibertneurolyme (Member # 6416) on :
WPinVa -- Yes I have plans to contact the VA Governor's Task Force as well.
I am currently drafting a response to the VA Dept of Health. Actually I was impressed with their quick response and at least willingness to enter into dialogue.
Dissemination of info is a starting point.
My initial letter obviously did not include all details of my husband's case and I will be providing more details and take it from there.
Bea Seibert
Posted by lymednva (Member # 9098) on :
I have my only positive tick borne disease test for Babesia Duncani. I live in VA, but I've been ill since way before I moved here 36 years ago.
Posted by lax mom (Member # 38743) on :
My husband was 1:1260 positive for Babesia duncani.
The far western part of VA is right beside my state. It's here...but no one's testing for it.
Posted by EWT1638 (Member # 11315) on :
Yep, I've got it.
Posted by faithful777 (Member # 22872) on :
I got Lyme and coinfections in VA.
Posted by seekhelp (Member # 15067) on :
I find that letter very interesting. I wonder if it does have some validity??
Posted by seibertneurolyme (Member # 6416) on :
Seek -- I am copying something below that I posted on another thread.
I can understand your frustration in the testing available. If the test is cross reacting with something else then I want to know what that is. I do not think someone gets a positive test without a reason -- I do think people with a positive Lab Corp (Focus Technologies) antibody test have some sort of blood borne protozoan. The strain and actual identity of the pathogen may or may not be babesia duncani (WA-1)
-------------------------------------------------
I don't totally know what to believe to be honest.
I do believe that the Lab Corp (Focus Technologies) antibody test is picking up antibodies to some sort of babesia like blood borne protozoan. Otherwise people who test positive would not improve with babesia treatment.
I do not think the species is babesia microti. Many people with a positive babesia duncani test test negative for babesia microti.
But if it is not babesia duncani (WA-1) then I think the various state departments of health and the CDC should be trying to figure out what species of babesia is making thousands of patients ill.
Yes we need a reliable test for babesia duncani. But I would rather them spend the money on finding out what species of babesia the current Lab Corp (Focus Technologies) test is actually finding.
Hubby and I learned a long time ago that if using antibody or PCR tests you have to know what you have before you can get a positive result. If you test for the wrong thing then you will never get a positive test.
If the current Lab Corp (Focus Technologies) test is positive because of the presence of some other unknown babesia species (a cross reaction I guess) then a new and improved babesia duncani test will not help those with a current positive test know what is making them ill and they will continue to be denied treatment by the IDSA and AMA docs because they would test negative on a new and improved babesia duncani test and would be told they do not have babesia by those doctors.
The Virginia Dept of Health letter also referenced a patient that Clongen found babesia in but the species was initially unknown. I think it said the CDC were the ones who found that the species was babesia odocoilei which is found in deer and of course they said that that species does not cause illness in humans.
As there is no readily available commercial test for that species (babesia odocoilei) there is no way to know how many tickborne patients have been infected and made ill by that species of babesia. Clongen and Fry do both have multiple species babesia PCR testing but few people order those tests due to the cost and uncertainty as to the reliability of these new tests.
But at least those 2 labs are attempting to develop new tests.
I personally believe there are many strains of babesia which infect humans but have not yet been "proven" to cause human illness. In my opinion malaria meds would not help improve symptomatology in tickborne disease patients unless they actually had a blood borne protozoan infection.
Antiparasitic meds can work on both G.I. parasites and blood borne protozoan but to my knowledge strictly malaria meds only treat blood borne protozoa.
Bea Seibert
Posted by Tincup (Member # 5829) on :
It makes me sick to read that letter. REALLY sick! SO many lies!
The way they have "checked" cases in Virginia is to go to doctors who are testing for Babesia, bring back their cured Babesia patients and then, yes THEN run their own CDC tests on them.
When the CDC tests are negative, and OF COURSE they will be AFTER the patient has completed treatment, they declare these patients to never have had Babesia. And worse, they've told doctors Babesia isn't in Virginia and to NOT test for it as a result.
HOW STUPID CAN THEY BE?
In my opinion they are ruthless. They target LLMD's and this particular letter writer is NOT our friend, NOT sincere and NOT to be trusted.
This is the same garbage (not in MY State) they pulled in other states, especially Florida, which ended up like now, disabling and killing people. I've lost relatives for the same exact reason you did Bea. I still am hurting for your loss.
Bless you dear Bea. I hate to see you waste your time with this guy and give him more ammunition to use against us. In fact, it is likely to be ammunition to use against that lab you used.
UGGGGGGGGG!!!! Now I am really awake!
Posted by seibertneurolyme (Member # 6416) on :
Tincup,
Not sure what will come of all this, but I am going forward. Sending more info to the VA Dept of Health, the CDC and the lawyer I hope to hire for my medical malpractice case against the Virginia hospital where Steve died.
Steve's LLMD and I both feel that we have a strong case against the hospital. I am still in shock after reading the IDSA guidelines for babesia today -- according to their own guidelines, with pulmonary complications Steve should have gotten babesia meds plus a blood exchange.
But of course the hospital did not know how to test for babesia and delayed testing until it was too late to help him. The positive Clongen blood smear for babesia came back on the morning of Steve's death. And the positive PCR test from Fry Lab for 3 unnamed uncategorized babesia like blood borne protozoans was from blood after he died and had received 6 days of mepron and Zithromax which he got only because I went to the medical ethics board of the hospital.
I am going forward like I have ever since Steve first became ill. We always practiced the policy of full disclosure with all physicians. I have nothing to hide or nothing more to lose at this point.
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