Malaise and burning sensations, reactive RPR

[Blahblahblah123456]

I have been dealing with a “spaced-out” feeling for years now. Not sure how to explain it but it’s like I can’t feel my body, like my body is numb and it’s gotten to the point sometimes I can’t tell my right hand movement apart from my left hand movement because I can’t feel them. Doctors have been unable to diagnose me for 5 years and it’s getting worse. It started out it in my arms and was only happening every few months, now it’s my entire body and it doesn’t go away. I’m constantly in this state which has made it very hard to feel present. I’ve started to just call it malaise since it’s an overall weakness/light feeling. And I also have moments where I Get really dizzy or feel like my body is shutting down and during these times my heart beat gets so weak that it’s hard to feel it. Recently I’ve started to have worse symptoms.

The other day me and my bf were having a great day and we were driving home, when suddenly I started feeling a burning sensation inside of my head (left back side), I asked him to touch the outside of my head and just in that one spot it was extremely hot. Then I started feeling a pressure and almost like something heavy was suddenly blocking my thinking. I started slurring and felt like I was going to pass out. We were terrified. The ER did nothing because of my low insurance and after hours the feeling passed but I’m starting to get like a quick burn sensation that lasts seconds throughout my head and it happened the other day on my foot too.

I also woke up one day recently with calf pain so bad I couldn’t walk on that leg. My d-dimer was negative.

I’ve also had chest fluttering and abdominal pains and mentally have not felt like myself at all.

I’m taking iron for my iron-deficiency anemia and birth control for my fibroid. And I had a reactive RPR test for syphilis but a negative FTA-ABS test and my boyfriend had a nonreactive RPR test and we’ve only had sex with each other for almost 2 years.

I’ve had normal MRI’s of my head/neck in the past and normal blood tests besides low white blood cells and low iron and that reactive RPR.

None of my symptoms seem connected with one another and it’s seriously driving me crazy. I’m so terrified that by the time doctors know what I have it’ll be too late. I remember what it was like to have a normal body and I just want to get back to that but I don’t even know where to start. My mother has lupus so I’ve started to consider that but I don’t have a butterfly rash or the more typical signs. At one point I considered neurosyphilis but now that I see my bf has a negative test I’m not sure how that would be possible. From my understanding though, a reactive RPR means my antibodies are off. Something is really wrong and I don’t know what and it’s terrifying. And the doctors don’t believe what they can’t see. I’m only 28.

[GBS_patient]

I second the Lyme possibility.  My story spans 4 decades with nuero sx, pain and fatigue.  There are multiple bacterial Lyme infections displaying a wide range of strange symptoms; today's Great Imitator.  Millions of people go undiagnosed with Lyme, one appt at a time.  The thing to know is that none of the doctors in mainstream medicine are responsible for diagnosing Lyme Disease.  Mine all told me 'Impossible'.  this is standard.  You have to find a private Lyme Dr on your own.  Life changing.  A great intro to Lyme is Under Our Skin documentary- watch the trailer free on Amazon.  
In HS I noticed an itchiness in my brain and subtly wondered if it could be something.  It progressed to numbness of face and hands, pins and needles.  I've had bouts of leg ataxia where a few times I went to walk and could not feel the contact with the ground so fell.  The spaceyness is called Brain Fog.  It is the infection- I've got lots of lesions.  The vaguas nerve can also be involved which depresses the CNS.  Many tests showed signs of infection, but the only solution is antibiotics and you have to see an LLMD for that kind of treatment.  I also have a histamine problem, from the infection, antibiotics and other irritants- these effects are cumulative, so removing what you can as early as you can figure it out is key.  And oh YES, brain On Fire!!  I also had decades of CRPS chronic pain that only narcotics could manage.  I am pain free a year now, after Lyme treatment.  My form of Lyme is Bartonella= cat scratch fever.  There are several ways to contract it, but only one solution, you know my schpeel…
oh and p.s. it almost killed me- my liver and heart got infected when I got really sick over a few days and it just kept going for 2 years until I was finally diagnosed with sepsis.  Then almost refused treatment due to chronic condition.  Then I found an LLMD bc someone with Lyme gave me this tip.  I have a long scrappy story and people still look at me and find it hard to believe I'm ill at all.   good luck to you!  

[Blahblahblah123456]

Thank you SO MUCH!! You don’t know how much just hearing someone can relate to my symptoms makes me feel better! Everyone around me makes me feel like my brain is somehow making it all up. It’s exhausting.

I’ve also been listening to doctors for years now saying it’s just my anemia but taking my iron and doing as they say has done NOTHING. It’s gotten worse.

I did live in Kentucky as a kid next to a cornfield where we frequently had ticks on us and I have been scratched by several cats throughout my life. But I never thought twice about it since no symptoms showed up right away. How long after does Lyme take to show signs? And where were your lesions showing up? I’ve had normal brain and neck scans so far, is there somewhere else I should be looking?

I’m definitely going to look into an LLMD. I have to be referred in order for my insurance to cover it so I might try to go through my doctor once we rule out lupus (which runs in my family).

But it’s definitely a scary thing, the other day I got frustrated because I was trying to cut a steak and I couldn’t grip my fork, I suddenly didn’t have any strength to close my hand around it. The numbness/brain fog is what’s really started bugging me cause I feel too out of it to function normally. And because no one can see it I can’t explain it. It’s infuriating! And so scary.

[GBS_patient]

My pleasure!  I really hope this helps.  25 years ago I wanted to figure out this mysterious phenomena and to educate others when it was predominately CRPS pain.  I did have brain lesions at the time which progressed.  But I couldn't figure out why.   Then came years of abdominal pain.  Next phase heart flutters that escalated to feeling like minor attacks- enough to call an ambulance once a month.  All states but Hawaii have Lyme- I got it in California around 1980.  I always thought that some day my Dr's would diagnose me, but now I understand what they mean about Lyme being controversial.  I was welcomed to a Lyme forum with a mention, 'hope you have good finances' because it's going to be expensive.  True, you probably need to pay out of pocket for the doctor and beginning tests.  But even my medi-cal picked up the prescription costs, so that was a huge help.  I had to do in home IV treatment and am now starting IGG antibody treatment, and these were picked up too.  Prior to this I spent, well wasted, six figures seeing unhelpful private Dr's over the years, so in comparison at least this is cost effective.  I knew I had a tick as a child- the head stuck overnight but I did not get sick then and when I did it was a bad knee and PMS-like sx at first that were not connected.  It took decades to progress the way it did, one bout at a time.  Another tip...  Your doctors are unlikely to refer you to a specialist- the only ones being outside your plan- and will probably tell you its not Lyme.  They may test you... but beware that the standard test isn't reliable for anything but a 2 month old infection give or take.  To test positive by CDC/mainstream medical standards, you have to have a really high antibody response that only happens when the body is initially fighting off the infection.  An LLMD will use a better brand of tests.  S/he will test for multiple types of infections, because it's rarely just one.  They will compare levels of responses and compare them with your symptoms.  It's not rocket science, but it takes more attention than standard doctors can do, even if they wanted to.  Like syphilis, the treatment causes a herxheimer die off that is unpleasant.  The bacteria are cousins, and Lyme is the black sheep.  Which is so ironic since you get it by caring for animals and spending time in nature vs syphilis.  Once you have a diagnosis it's a different ball game, but at least you can start to play!  I do hope this helps you, thank you for your kind response.  I'm happy to give additional feedback~

[Ken_PA]

"None of my symptoms seem connected with one another..."

When the immune system goes awry, it can produce all of your symptoms and more. It would take an immense amount of mental effort to absorb and coalesce all the info you'd need to know about these types of things. I hope you do go down that path regardless, as that's probably your best chance to help yourself. Expect endless complexity.


Or, a simple approach would be to get your doc to stop the Birth Control, just to see if that might help. There is such a thing as drug induced lupus, and BC is one of many such drugs. Why possible stroke/TIA in a young female? BC is a known risk factor there - though the mechanism isn't fully known, so an eventual negative D-dimer looking for a DVT doesn't necessarily apply (though that result was truly helpful to know about overall anyway).

But you don't have to be confined to thinking of lupus specifically - since nobody knows what it is exactly.

[auntiejessi]

I'm sorry I can't address more than this, but a positive RPR here, with the negative FTA-ABS is a false positive. You don't have syphilis.

There are some things that can cause that, other than just a fluke. Lupus is indeed one of them, as is Lyme Disease, HIV, and malaria. Pregnancy is one, but that doesn't seem to be a concern here.

You don't have to have the butterfly rash, and the only way to rule out lupus for sure is testing.

I'd ask for some specific testing here - Lyme, ANA antibodies and some others for lupus - https://www.medicalnewstoday.com/articles/323653.php#diagnosis.

Let us know what happens. I'm sure others will come along to help, too.