Antiphospholipid and Lyme disease

Posted by soitis4590 @soitis4590, Jun 6, 2016

I was diagnosed in with APLS in 2001 after a stroke. I am now trying to manage symptoms from quite disabling late stage Lyme and Bartonella. ( I was treated for Lyme in 1994 and 1999). Is it reasonable to connect the autoimmune disease and tick born illnesses in that time frame?

Welcome @soitis4590.
You’re the second person in less than 24 hours to post about antiphospholipid syndrome. @lena999 also wrote about being diagnosed with it 2 years ago.

According to this article by Mayo Clinic http://mayocl.in/1YaYc5X “People with certain infections, including syphilis, HIV infection, hepatitis C and Lyme disease, among others, have a higher incidence of having antiphospholipid antibodies.”

What symptoms of APLS do you have and how are you managing them today?

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@colleenyoung

Welcome @soitis4590.
You’re the second person in less than 24 hours to post about antiphospholipid syndrome. @lena999 also wrote about being diagnosed with it 2 years ago.

According to this article by Mayo Clinic http://mayocl.in/1YaYc5X “People with certain infections, including syphilis, HIV infection, hepatitis C and Lyme disease, among others, have a higher incidence of having antiphospholipid antibodies.”

What symptoms of APLS do you have and how are you managing them today?

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Hello,
Thank you for he link!!
I’m not sure what my symptoms would be today from APLS. The stroke certainly left me with some problems which continue today. Because I am on Coumadin (and aspirin is that med really necessary?) there are many repercussions from that. I need the usual bloodwork every 10 days to 4 weeks, I bleed and bruise easily, I can’t take many antibiotics, I restrict my diet some-so as not to have to deal with the vitamin K issue, surgeries which I have needed are complicated by Coumadin. All the usual Coumadin stuff. The major event from APLS was the stroke. And perhaps a second in 2011. I consider it a TIA if that. No testing was done to confirm one and after 48 hours all issues were resolved with no deficits. A new dtroke has not been seen on future MRIs.
My late stage Lyme/bartonella symptoms are the most challenging right now. Is there a discussion group on this website for Lyme?
Why is there little discussion about APLS and stroke? I think a number of people must have it with problems.

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Please go to Amazon.com and order the book “Why Can’t I Get Better?” by Dr.
Richard Horowitz – it is an amazing book about Lyme Disease and it
recommends a wide variety of supplements that have made a world of
difference for me. Best wishes..

http://www.amazon.com/Better-Solving-Mystery-Chronic-Disease/dp/1250019400?i
e=UTF8

&keywords=horowitz&qid=1465316268&ref_=sr_1_2&s=books&sr=1-2

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@vickiekay

Please go to Amazon.com and order the book “Why Can’t I Get Better?” by Dr.
Richard Horowitz – it is an amazing book about Lyme Disease and it
recommends a wide variety of supplements that have made a world of
difference for me. Best wishes..

http://www.amazon.com/Better-Solving-Mystery-Chronic-Disease/dp/1250019400?i
e=UTF8

&keywords=horowitz&qid=1465316268&ref_=sr_1_2&s=books&sr=1-2

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Thanks for the tip. I actually just purchased the book at the recommendation of a friend. It’s good to hear another finding the book helpful. I’m just beginning this recovery, so everything helps!

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I had lymes disease twice with the “bullseye”and was treated both times, had OPS(open heart surgery) to remove libman Sachs and have my mitral “valve repaired” because of this. I have had a few years to investigate this correlation: Articles and people say APS needs a trigger” and this/lymes could be one of the triggers as many people have found this to possibly be their trigger. Cindy

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Hello to all, i was wondering if having a bad reaction to a childhood shot, i think it was the two month shot for whooping cough, could be a trigger to develop APS? I appreciate any input on this. I did some rearch in pubmed and remembering reading something about a possible correlation in developing APS. I would appreciate any input, thank you, and God bless

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@elaine1809

Hello to all, i was wondering if having a bad reaction to a childhood shot, i think it was the two month shot for whooping cough, could be a trigger to develop APS? I appreciate any input on this. I did some rearch in pubmed and remembering reading something about a possible correlation in developing APS. I would appreciate any input, thank you, and God bless

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Hi @elaine1809, Welcome to Connect. While we wait to see if other members are able to share their experiences or suggestions, may I ask if you have been diagnosed with Antiphospholipid Antibody Syndrome (APS)? Mayo Clinic some causes listed on their website here:
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831

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@johnbishop

Hi @elaine1809, Welcome to Connect. While we wait to see if other members are able to share their experiences or suggestions, may I ask if you have been diagnosed with Antiphospholipid Antibody Syndrome (APS)? Mayo Clinic some causes listed on their website here:
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831

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Hello John, nice to meet you. My daughter have had two positive test for the antibody in two pregnancies. Today she will be going to her high risk pregnancy doctor to know more about the tests and anythingelse that her dr found out. he hasnt told her she ha sit yet, but he already prescribed the injections and the aspirin as a medication to prevent blod clots and for her 7week fetus to have a better chance of survival. I went ahead and researched the medication and the antibody and i came up with the APS syndrome. She has all of the conditions to be clasiffied as having it, but the dr has to confirm. I am aware that most drs dont give total information and dont do enough research to inform themselves and their patients of rare diseass like this one so i took it upon myself as a mother to educate myself and my conclusion is that i woul dlike to take her to Mayo clinic for further complete analysis of this rare disease. Ima relieved and hopefull that i found additional information here. And also a support group in case she has full blown APS

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@elaine1809

Hello John, nice to meet you. My daughter have had two positive test for the antibody in two pregnancies. Today she will be going to her high risk pregnancy doctor to know more about the tests and anythingelse that her dr found out. he hasnt told her she ha sit yet, but he already prescribed the injections and the aspirin as a medication to prevent blod clots and for her 7week fetus to have a better chance of survival. I went ahead and researched the medication and the antibody and i came up with the APS syndrome. She has all of the conditions to be clasiffied as having it, but the dr has to confirm. I am aware that most drs dont give total information and dont do enough research to inform themselves and their patients of rare diseass like this one so i took it upon myself as a mother to educate myself and my conclusion is that i woul dlike to take her to Mayo clinic for further complete analysis of this rare disease. Ima relieved and hopefull that i found additional information here. And also a support group in case she has full blown APS

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@elaine1809 It's nice to meet you too. I think it's great that you are advocating for your daughter and learning as much as you can. A lot of times when I'm researching medical conditions I will use Google Scholar (https://scholar.google.com/). It lets you sort the results by year so that you can easily find the latest information. I did a search using the terms antiphospholipid antibody syndrome + pregnancy and found quite a bit of information. This article seemed like it might be helpful for you.

A case of successful pregnancy following multidrug treatment including rituximab and intravenous immunoglobulin for primary antiphospholipid antibody syndrome refractory to conventional treatment
https://www.tandfonline.com/doi/abs/10.1080/24725625.2019.1648633

Here's the search results link: https://scholar.google.com/scholar?as_ylo=2020&q=antiphospholipid+antibody+syndrome+%2B+pregnancy&hl=en&as_sdt=1,24&as_vis=1

Liked by elaine1809

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Thank you! Mr john iam going to read it right now. I appreciate it!

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