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Crazy symptoms, Anaplasmosis diagnosis!!!

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Posted 10/15/2019 12:19 PM (GMT 0)
Hi,

I was just wondering if anybody had experienced something similar to me.

I have been unwell for about 18ish months.

I had flu like symptoms in January 2018 which seemed to pass, then one day in March 2018 I just woke up and my vision/visual perception had changed. It feels like am spaced out all the time, it’s quite hard to describe.

I have a really strong pulse all the time which is visible in my neck, wrist, abdomen, groin, feet, chest. It seems to beat really powerfully all the time, however bpm and pressure is ideal. I’ve had cardio exams which have all been normal.

I have near constant frontal headaches, which are made worse by screen time and tinnitus.

I have a strange patch of vitiligo which has appeared on the back of my head/neck

I also have developed some gut issues.

After months of consultations and no answers, I was finally put in front of a LLMD who did a tick panel and diagnosed me with Anaplasmosis, I tested negative for Lyme and other co-infections. I’m assuming the flu like symptoms at first might have been the acute reaction. I do not remember being bitten but as I have read this seems to be quite common.

I did four weeks of Doxycycline which didn’t really help, then a few weeks off and now I am on an eight week course.

I am also taking a probiotic, digestive enzymes, electrolyte tablets, bone broth and eating healthy.

Has anybody got any advice or experienced similar things? The headaches and the strong pulse are probably my worst symptoms.

Thanks :D!!!
Posted 10/15/2019 4:20 PM (GMT 0)
Hi Jovalyme,

Thanks for replying really quickly smile.

My infectious disease Doctor is really good and she is confident of the diagnosis, I know I was tested for Borrelia more than once, I don’t really know much more than that atm though, I’ll find out more when I receive her report.

My gut problems are not too bad atm, they were worse when I was undiagnosed, I had a GI Map done and my results showed high levels of Strep in my gut and low levels of Lipase. My nutritionist is thinking the Doxy has cleared the strep and I’m taking enzymes for the Lipase.

My worst symptoms are the headaches and the pulse stuff.

What do you think I would need on top of the Doxy? I’m not sure how to go about getting more meds because the ID Doctor is confident in what we are doing, she said she has treated a number of patients with chronic Anaplasmosis and I can’t ask my GP has never really heard of it haha.

I spoke to somebody linked to Armin labs today and they suggested maybe T-Cell testing for active infection but not until after the Doxycycline.

No I don’t have general pain or joint pain and my energy levels are pretty good. I feel like I could go out for a run and it’s really frustrating me that I can’t exercise fully atm, I’ve just been doing some short walks.

I’ve always been big into the gym and sport before this.

Thanks again!!!
Posted 10/15/2019 7:40 PM (GMT 0)
Thanks Jovalyme I will definitely try searching it, I never thought of that haha.

Hi Rainycloud,
Sorry that you are experiencing that, that isn’t the way I would describe what I have though, it’s a shame that you can’t post videos on here otherwise I would show you how strong it is.

It’s 24/7 just beating really hard, some theories make me thing maybe it’s a blood issue maybe but I’m not sure, I’ve been taking a lot of Himalayan salt and other electrolytes to try and sort it but so far nothing seems to do the trick!!!
Posted 10/15/2019 7:50 PM (GMT 0)
You need to see an LLMD (Lyme literate medical doctor) who is ILADS trained for ongoing treatment.
Posted 10/15/2019 8:10 PM (GMT 0)
Hi,

What is ILADS?

My ID is definitely Lyme Literate, she knows Dr Armin Schwarzbach from Armin labs and has talked in detail to me about Anaplasma and other coinfections. Maybe she is ILADS trained?

Thanks!!!
Posted 10/15/2019 8:29 PM (GMT 0)
Jack46,

I have the same symptoms 24/7 that drive me crazy. I'm still experimenting and haven't found a solution yet for my strong+visible pulse. Maybe it helps to know there are other people with tick-borne infections experiencing the same symptoms. I'll post if I find anything that works.
Posted 10/16/2019 7:24 AM (GMT 0)
Hi Jovalyme,

I am also in the UK. My ID did not send them to Armin, she had a different independent company test them I think, I am from the North but I travelled down to Bristol Spire to see her, she has moved to Spain now though and I’ve been communicating via phone/Skype.

‘I currently sit on the Steering Committee for Lyme Disease for the Royal College of GPs and have been involved in writing a definitive online Toolkit for Lyme Disease in the UK and educating GPs about this disease’

That’s pasted from the ID’s website.

I’m thinking of maybe doing some of the Armin tests also, when I’m off the Doxycycline, if I’m still struggling to see what they say. They are expensive though aren’t they.

Hi Alexdud,

What infections do you have? It seems to be hard to find people sharing the same symptoms as me tbh. Hopefully we’ll both get sorted soon!!!
Posted 10/16/2019 8:23 AM (GMT 0)
If the doxy alone isn't working....then adding Rifampin to it would be a good idea.


LLMD Burrascano's lyme treatment guidelines (He's a pioneer for chronic lyme disease - in case you don't know who he is - mention that doxy may not be sufficient.
I still refer to his older guidelines on treatment occasionally.
Posted 10/16/2019 1:28 PM (GMT 0)
Hi Girly,

How would I get hold of Rifampin? Does that need to be prescribed?

Hi Jovalyme,

I will deffo get tested again, I’ve been speaking to a nutritionist from AONM, they said not to test on the Doxycycline though, as may affect results, so no testing for about 10 weeks :/ ... It’s crazy all this, just want to not have a screaming headache every day. Is there anything that anybody recommends for headaches?
I’ve ordered some CBD but that doesn’t always work

Also, I just tried dry brushing, then an Epsom salt bath for 20ish minutes. It’s made me feel even worse haha.

Thanks everyone for commenting and helping me smile!!!
Posted 10/17/2019 3:43 AM (GMT 0)

Jack46 said...
Hi Girly,

How would I get hold of Rifampin? Does that need to be prescribed?

Hi Jovalyme,

I will deffo get tested again, I’ve been speaking to a nutritionist from AONM, they said not to test on the Doxycycline though, as may affect results, so no testing for about 10 weeks :/ ... It’s crazy all this, just want to not have a screaming headache every day. Is there anything that anybody recommends for headaches?
I’ve ordered some CBD but that doesn’t always work

Also, I just tried dry brushing, then an Epsom salt bath for 20ish minutes. It’s made me feel even worse haha.

Thanks everyone for commenting and helping me smile!!!


Try Benadryl for the headaches. One pill usually doesn’t make me drowsy.
Posted 10/17/2019 6:40 AM (GMT 0)

Jack46 said...
Hi Girly,

How would I get hold of Rifampin? Does that need to be prescribed?

Hi Jovalyme,

I will deffo get tested again, I’ve been speaking to a nutritionist from AONM, they said not to test on the Doxycycline though, as may affect results, so no testing for about 10 weeks :/ ... It’s crazy all this, just want to not have a screaming headache every day. Is there anything that anybody recommends for headaches?
I’ve ordered some CBD but that doesn’t always work

Also, I just tried dry brushing, then an Epsom salt bath for 20ish minutes. It’s made me feel even worse haha.

Thanks everyone for commenting and helping me smile!!!

Yes, Rifampin is a pharmaceutical - a prescription is needed.
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