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  • Got the test results; not Lyme, its Babesia Ducanti

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    Old 11-10-2008, 03:46 AM   #1
    Nexis
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    Got the test results; not Lyme, its Babesia Ducanti

    Ok my fellow readers and lurkers.


    The long awaited result is here! , especially with the FexEx drama that I had to go through to get my blood past USA customs. All the professional medical jerks( to many to count on my fingers!), especially the one that told me that I need to be admitted to the psychiatric ward.


    Its not Lyme, yet tested Postive for the Babesia Ducanti strain through Igenex testing.


    If I never ordered the co-infections testing, I would never have known and would have been continued to be sick and crippled.


    My Reumatoid doctor called the infectious disease specialist at the hospital and the doctor wants to see me immediately. I am lucky that this infectious disease specialist is very famous and knows alot about Babesia.


    My advise through all of this is, spend the money to get tested throughly by Igenex and also order the co-infection testing. The staff at Igenex was very helpful, listened and answered my questions with excellence. I am writing to the Better Business Bureau for their quality service!

    I initially got tested by the Government infectious disease center and they do not do co-infection testing, and bascially left me to be ill. Damn them.



    Lastly if it was not for Healthboards, username Ticker, and all of the others who have help supported me emotionally while so many tragic things happens because of the doctors not knowning or ignored my conditions I would not be here. Until last week I was having suicidal idealization. Lyme and its related diseases are grossly understood and misdiagnosed.


    Thank you for all of your help, your encouragement!

    I will post in a few days as to what course of treatment the Infectious Doctor will take.

    Last edited by Nexis; 11-10-2008 at 03:49 AM.

     
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    Old 11-10-2008, 04:40 AM   #2
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Nexis,

    Thankfully, thankfully you can begin to heal...I am crying now knowing that you have found your answers. I only wish I could have offered you more support over the past few months but instead I "lurked" and silently offered my prayers.

    Thank you for sharing your experience...it will help many, many people.

    Bethsheba

     
    Old 11-10-2008, 06:01 AM   #3
    Nexis
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Bethsheba, hello! I didn't think you would be lurking through my post, I feel flattered!

    With situations alike lyme and related diseases, its difficult to get to the bottom line in one day, even months or years down the line.

    I have posted since June of last year and I finally found the answers.

    Yet in between the doctor visits, I LOVE being on here, both lurking and reading other people's input on various condition.

    And Bethsheba I remember you on the Sleep section. How are you? Are you seeking out a sleep-related condition?

     
    Old 11-10-2008, 06:41 AM   #4
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Nexis,

    I've read a number of your posts as I was anxious to know what the outcome of your diagnosis would be. You were up against some insurmountable odds, but despite this, you kept an open mind and an active search. We have much to learn from you!

    Yes, we indeed met on the sleep boards...but I have lurked on many other boards, too, because I experienced multi system symptoms which I found out (inadvertently) were caused by my blood pressure medication (the sleep problems were just the tip of the iceberg). The symptoms were physically and mentally disabling, but disapeared within 24 hours-6 weeks after discoing the offending medication (this after about 3 years of my doctors saying "no, it's not the med"). My experience has devastated me financially and as a result I spend some time each day trying to prevent that from happening to someone else.

    In reading the various boards themes immerge...Lyme appears to lurk everwhere...and I try to alert people of the possiblity. We have it where I live, so perhaps, I am more aware than some.

    Take care Nexis,

    And again I am so very, very happy that you have found some answers!

    Bethsheba

    Last edited by bethsheba; 11-10-2008 at 06:42 AM.

     
    Old 11-10-2008, 03:03 PM   #5
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Nexis
    I i may could i ask you how much did it cost you for all the test to be done by Igenex ?

    I have had 2 test done at Stony Brook Univ on Long island and 1st came back with 5 pos band on the igg west blot ( 18*30*39*41*58)

    But 2nd test was told they show much fainter and only 2 postitive bands? not really sure what that all means . Waiting to get print out on 2nd test and was also told they were gonna re check samples of both.

    But doc want me to start the med in the arm, but kind of not sure?

    thanks mike

     
    Old 11-10-2008, 09:10 PM   #6
    Nexis
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    For all of my tests, including the regional co-infection (Western USA) was equivlanent to 1,200 USA dollars.

    You can order the test kit directly from Igenex, yet call them and see which tests you should order. Have the doctor draw the blood. Unless you are seeing a highly reputable LLMD, its not safe for a doctor to select the test themselves. There's so many different kinds of variants of the co-infections.

    Also if you have lived or extensively travelled to different parts of the States you will need a different kind of co-infection testing since the strains are different from coast to coast.

    I know 1,200 dollars might seem alot, yet when my primary doctor informed the infectious disease doctor what kind of testing Igenex untilized, the doctor was impressed since its very sophisticated.

    If you are having symptoms, do not let it slide by, its will get worse.


    I hope this helps.

     
    Old 11-11-2008, 09:00 AM   #7
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Hi Nexis, Congratulations on finding out you have Babesia. Now you can get it treated.

    So is lyme completley ruled out? My testing for lyme through Igenex never had a positive. I had to have a doctor go on my symptoms. Just keep that in mind.

    I read up on the SYMPTOMS of Babesia and found lots of info to read. Couldn't find the strain you have though.

    I had a pending on my Babesia test and the doctor at the time never treated me for it.

    Finally after being on these boards ae year or so ago I was still having problems with my breathing so the doc I see now agreed to put me on Plaqunil. And now I breath much better and no sweats....yeah!

    I hope you get back on your feet real quick. It will take time.

    Keep in touch!

    Hugs

     
    Old 11-11-2008, 04:23 PM   #8
    Nexis
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Thank you jojo for your reply!

    You must have been through alot yourself, and with such condition like lyme and its cousin parasites, its a basketcase!


    I was reading that Babesia does cause breathing and sweating problems, did you have a co-infection testing through Igenex?


    Also how common is Babesia, what are the statistic of this co-infection?

    The strain that I have is the west coast version, first found in a immunocompetent man in Washington State in 1993.

     
    Old 11-11-2008, 05:07 PM   #9
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    I found "B. duncani" was a more common spelling. It is also called "Babesia WA-1"

    I kind of remembered finding info on this strain when I was looking at Babesiosis after taking to Dr. M.

    It is predominantly in North America (Western US) & Asia, where as many will find more information on the Eastern US variation B. microfti.

    And yes. I am a research junkie and I do occasionally have bursts of my old photographic memory skills (I really hope I get that all back!).

    Regards,
    Shelley

    Hope that helps and here is what I found:

    [url]http://www.ncbi.nlm.nih.gov/pubmed/16725142[/url]
    Quote:
    The morphologic, ultrastructural and genotypic characteristics of Babesia duncani n.sp. are described based on the characterization of two isolates (WA1, CA5) obtained from infected human patients in Washington and California. The intraerythrocytic stages of the parasite are morphologically indistinguishable from Babesia microti, which is the most commonly identified cause of human babesiosis in the USA. Intraerythrocytic trophozoites of B. duncani n.sp. are round to oval, with some piriform, ring and ameboid forms. Division occurs by intraerythrocytic schizogony, which results in the formation of merozoites in tetrads (syn. Maltese cross or quadruplet forms). The ultrastructural features of trophozoites and merozoites are similar to those described for B. microti and Theileria spp. However, intralymphocytic schizont stages characteristic of Theileria spp. have not been observed in infected humans. In phylogenetic analyses based on sequence data for the complete18S ribosomal RNA gene, B. duncani n.sp. lies in a distinct clade that includes isolates from humans, dogs and wildlife in the western United States but separate from Babesia sensu stricto, Theileria spp. and B. microti. ITS2 sequence analysis of the B. duncani n.sp. isolates (WA1, CA5) show that they are phylogenetically indistinguishable from each other and from two other human B. duncani-type parasites (CA6, WA2 clone1) but distinct from other Babesia and Theileria species sequenced. This analysis provides robust molecular support that the B. duncani n.sp. isolates are monophyletic and the same species. The morphologic characteristics together with the phylogenetic analysis of two genetic loci support the assertion that B. duncani n.sp. is a distinct species from other known Babesia spp. for which morphologic and sequence information are available.
    [url]http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T7F-4JW7V7B-1&_user=10&_rdoc=1&_fmt=&_orig=search&_s ort=d&view=c&_version=1&_urlVersion=0&_u serid=10&md5=ae4af899f6418cee312c7490c25 3e3d9[/url] This has some interesting Babesiosis info in it and is specific to B. duncani with its relation to other Babesia species. Unfortunately it is 31.50 for more than the abstract... But it is not my call on its intrinsic worth to others so I am including the link.

    [url]http://www.cdph.ca.gov/HealthInfo/discond/Pages/Babesiosis.aspx[/url] And here is the California Public health saying almost all are B. microti but 6 (count em... SIX) cases have been B. duncani. (Wonder what the real numbers are)

     
    Old 11-12-2008, 08:52 AM   #10
    Nexis
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Thank you CuterWcurve!


    I found out today at the doctors that they only have treated one case of Babesia in this country!

    It was called the WA-1, yet now officially called B. Ducani. Yet really who cares now, what matters is that the doctors can treat me without any experience, yet knowledgeable in infectious diseases.

    So I am being pretty much being treated by the book. Babesia in the country that i moved to here is very rare, including Lymes.

    Yet I know now exactly due to the information below that I caught it on the West Coast.

    The problem is, even the doctors and all the research and the research I have done is not listing a through symptoms list.

     
    Old 11-13-2008, 06:17 AM   #11
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Hi Nexis,

    Are you on a treatment plan yet? What are they giving you?

    Yes it has been a complete nightmare for me also. I suspect getting sick early 80's. going back through old doctors notes, test ect I started going to doctor's around that time. Over the years up until 1992 had been bitten over and over by ticks. And of course like many people didn't know about lyme, and when I did learn about it I was told it didn't exisit in my area. ugh!

    After being bit in 1992 those truly knocked me down. And still no doctor listened up until 1999. I was at death's door. I got to the point of not being able to walk or use my arms. I had every symptom there is. I wound up getting the crude between my scalp and skull. And twice out of the month I would just go insane.

    Tons of test for lyme. Test for some of the co-infections. Yes I had a pending for babesia thougth Igenex.
    I kind of feel after reading about lyme and all it's co-infections that after you have had it a while some of us just can't get a true positive. Beings all these little critters don't like oxygen. crazy stuff!

    But the good news is I am doing 90 per cent better. I am pulled off antibiotics for now. Atleast until Feb. this is when I will talk to my doctor again. I am on many supplements and doing infared sauna.

    I still have some of the infection on the back of my head around my soft spot and it funs down the back of my head. But I don't react to it like I use to. Just this last week my muscles were weak and my thinking was off a little. It makes me sit for a couple of days and then it lifts. and of course it seems to do this to me around the full moon.

    I want you to know that you just have to keep reading and doing research and fighting. Your igenex test may not have caught everything that you have. Please keep that in mind.

    Once the body starts breaking down you can catch so many other things.
    Has anyone tested you for your Herpe titers??? Such as Epstein Barr and Cytomeglovirus?? If the titers are high you truly need to have some treatment for virus's.

    Have you also been tested for Chlamydia Pnumoniae and mycoplsma pnumoniae bacteria's. These little critters lovvveeee our sick bodies.

    I hope and pray that you start to heal quickly!

    hugs,

    Jodie

     
    Old 11-13-2008, 09:56 AM   #12
    Nexis
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Jojo I really appreciate you sharing with me your journey through all of this. Healthy people don't understand! Its really being at the Death's Door.

    Yet I am so glad to hear that you much better and healthier.


    I have two doctors that are monitoring my condition since there's only been a few cases of babesia in the entire country.




    So the other day, he gave me a HIV test to make sure that my body was not immunodeficient, since my body can deteriorate and can cause death if I was to be HIV positive. They froze my blood until they can find a lab that can do a DNA testing to confirm that my babesia test is not false positive, yet they do not do DNA babesia testing in this country. I will call Igenex to see if they offer this test, and like you mentioned, if they can do more tests just in case I have some other co-infection. I also got a chest xray, EKG for my heart, and they drew all together 8 tubes of blood!

    Yet my doctor found something. Usually in healthy people, doctors are unable to feel a patient's spleen. In my case, my spleen is swollen enough for him and his medical team member to also feel the corners of my spleen, which means that there's most likely an active infection of Babesia, since this parasite will start weakening the kidney and the spleen and lastly the heart.

    I will have my spleen and kidney ultrasound in December, yet will receive my blood tests, x-ray, and EKG results in two weeks.

    The course of medication will be a drug to treat malaria and clinomiycin. I did do my own research and this is the standard course of treatment.


    I am also planning to purchase a medical book on Babesia because its seems that its much rare than Lyme. Like you said I need to keep doing my research and educate myself.

    Thank you so very much for your support and advise. I can't believe that I manage to get a diagnosis through an online forum than through the doctors.

    It makes us think that we need to look out for ourselves, yet help others who are experiencing similar issues and isolation.


    Lastly, my doctor said I can be an advocate for Babesia since the Infectious Disease Center in my country didn't test me for the co-infection. My doctor said he will be calling the researcher who cordinated my Lyme test without the co-infection and report to him that I am positive for Babesia.

     
    Old 12-02-2008, 08:33 AM   #13
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Nexis, I have babesia bad and cannot find a doctor here in Ohio ...

    Can you tell me where your doctor is and ( removed by the moderator )

    before the doctors here kill me?

    Last edited by moderator2; 12-02-2008 at 09:16 AM. Reason: please do not ask members to violate the posting rules

     
    Old 12-02-2008, 11:39 AM   #14
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    smartbuck -

    i'm originally from OH living in NYC. i know some people in OH with Lyme and most are going to a really good doctor in Missouri. I think St. Louis. There's a great doctor's thread on this board that might have his name, but I can track it down for you if i need to. Let me know... If there story is anything to go by, he's worth the trip. They looked for docs in OH for months before finally realizing in some states you just have to travel to get the care you need. I am being treated for Babs now after already getting treatment for Lyme and Bartonella. Babesiosis is by far the worst part so far... I hate these critters!


    Good luck!

     
    Old 12-03-2008, 06:25 AM   #15
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    Re: Got the test results; not Lyme, its Babesia Ducanti

    Hi Nexis, how are you doing?

    Been thinking about you. Do the med's seem to be working?

    Sending you hugs,

    Jodie

     
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