Anaplasmosis Experience???

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I had a mystery illness for about 17 months and then I finally got diagnosed with Anaplasmosis my titre levels were at 1:256.

My symptoms are crazy, constant headaches, struggle with screen time from phone, computers etc. Constant visual difference (had to explain, like an altered perception).

Also a strong bounding pulse where I can actually see many of my arteries moving up and down, especially in the neck and abdomen, as well as seeing my chest move with every beat. All this has been checked out with echo's, ultrasounds etc.

I’ve had 4 weeks of taking 200mg Doxycycline which I finished yesterday. I’ve had no improvement from the Doxy as of today. I am being retested in about 16 days, then a consultation with the infectious disease specialist around 3 weeks after that to discuss the next steps. Do you have any advice as I am still a bit in the dark about a lot of this. There seems to be a lot of literature about lyme available but not much at all about Anaplasmosis.

Thanks 😃!!!

0 likes, 7 replies

7 Replies

  • Posted

    I do not know where you are based. However here are some ideas. Norway and China both have a problem with Anaplasmosis and some research can be found on pub med. This infection was only found around 1994. It is increasing in the states as well as Europe. Farming sites are often the best option for understanding this as it is carried by horses, cattle and sheep...from research some animals recover, some become carriers as the infection remains at a low level. It is present in UK sheep and cattle. I have been left to rot, you need to be strong and fight your ground. The infection harms bone marrow and kidneys so you need to check this. If you are being looked after be grateful. I would really appreciate if you would pm me the name of the infectious disease hospital. Also it is usually Ixdes tick that passes this can also pass on a few other other things such as Babesia and Ehrlichia. Watch your temperature if you feel ill.... Let me know if you have any skin problems. ..Although it is not normally associated with anaplasma you might need a test for vasculitus if your veins are standing out as well as a blood pressure test....Keep to tetracycline antibiotics as anaplasma has been known to cause adverse reactions with other types. Hope you improve may take a little time for things to calm lets see what the expert says.

    • Posted

      Hi Sky,

      Thanks for the reply, I've really struggled to find people dealing with this diagnoses, sorry to hear of your struggle though.

      I am based in the UK, I live in the North although I was diagnosed via the spire hospital in Bristol.

      I don't seem to have any skin problems apart from a patch of vitiligo that started on the back of my head/neck have had ANCA blood tests during my search for a diagnosis would that rule out vasculitis? I have read that sometimes peoples blood can slightly thicken or become thinner in rickettsial infections? Also a possibility of sympathetic nervous system overdrive causing the pulse stuff maybe?

      Creatinine and Urea have been quite high which might reflect what you said about the kidneys. What other tests would you recommend. I've been feeling unwell for about 18 months now. What are your symptoms?

      Thanks 😃!!!

    • Posted

      Had 1 year pulsed Doxy. Felt great as fatigue and pain levels improved. However Muscle pain in the arms and sides of back are returning. there is also pain to the long bones in both forearms, hands are painful. . It is going to depend if there is anything else there besides Anaplasma. One of the things that has happened to me is an increase in Autoimmune diseases so you have to stay alert as they do not come overnight. Right now my ANA is positive(speckled) so maybe the beginning of Lupus, the gastric parentiel band test is positive and the liver is very unhappy. So an autoimmune screen is pretty good, look on medichecks for autoimmune screens and see if either fit.

      Anaplasma Phag often runs with Anaplasma Platys, Platys is a bloody nose disease so watch frequent nosebleeds. The Chinese have recorded it took multiple months of doxy to remove the infection in a woman. An ACE test will give information on oxygen from lungs to muscle but tells you little else. a high ACE first got me studying this and through medichecks tested positive for Rickettsia spotted fever, ehrlichia, rickettsia Typhus. These were validated at Porton Down. Getting the NHS to recognise this is hard it is supposed to be acute not chronic...not at all certain of that... it is in the sheep and cows in the UK, no one wants to address that one... Scotland does a new test on a specific type of lyme disease that is recurrent, you have to be in Scotland to access this one as it is through the NHS there, it is also at Porton Down as well but likely access is restricted.

    • Posted

      opps think I mentioned a private testing place by name...did not think..sorry

    • Posted

      Further tests...all range of rickettsia. ACE to check oxygen to muscles and skin. autoimmune screens..look those up.. babesia as it can run with anaplasma.only available in London..difficult one this as it needs to be tested with 4 hours of blood draw. Anaplasma platys if you are getting nosebleeds. thyroid function can be affected, Check for Typhus. Also check Mast cell activation when you get sick.

      my symptoms, bone pain to both forearms, hive type scratch markings, fatigue but thus is nothing to what they were, I reckon I was close to croaking some years back. had pulsed antibiotics for a year. I need a spinal tap but that brings its own problems as who will diagnose these obscure infections.

    • Posted

      pm me where in the north you are. why Bristol?

    • Posted

      also check for antibodies to Louping ill..this is supposed to be an English only tick related infection..not done it myself..

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