I am new to posting online but have come to a tipping point where I really need some advice. I have a very educated, respected, research oriented LLMD who literally said to me three months ago "I don't know what I'm treating anymore".
I have been sick since 15 (21 now). I have low CD57, yet the only bacterium test that came back positive was bartonella, by a lab called MDL, and I am not sure if there are false positives.
My symptoms are all neurological and debilitating. I used to have joint pain and low stamina but that got better. I've been on so many antibiotics I am not sure what cured that.
My neurologic/CNS symtoms are:
-Constant pressure and strange sensations in front of head (behind eyes, forehead)
-Strange temperature sensations all over head (sometimes feel like water is flowing through head also)
-Failure on the Shoemaker vision test (lack of ability to see contrast)
-Brain fog/Cannot focus
-Rapid heart beat
-Uncharacteristic emotionality/anger, personality changes
My biggest symptom, however, is that certain anti-malarial drugs (Mepron and Plaquinel) induce psychosis.
I become confused, disoriented, forget things, and have it happen when I'm driving and I forget where I am and everything looks blurry (haven't crashed yet but came very close). Then suddenly, I become psychotic with religious delusions, and have to be hospitalized in a mental ward.
This makes things confusing, because my herx reactions are psychosis. Totally debilitating. There's no way to help to detox when you're psychotic-they won't rush you to a sauna, they'll rush you in-patient to a mental hospital. And then I have to get on psych drugs and it is so debilitating that I've thought of suicide.
I went through the whole psych system. No psych dx fits.
As you would imagine, I don't want to treat something I don't have. Since my acute reactions are only to antimalarials I thought I had babesia. My doctor doesn't believe that babesia is a chronic illness, and I've been sick for eight years.
I learned recently about
protomyxzoa, but the test is so expensive, and I'm not sure it would really help the situation. I've thought toxoplasmosis, giardia (I did test borderline positive for giardia) or some other parasite. I've ordered some Ivermectin, Alina, Albendazole, and Tinidamax to try out, but I'm desperate. I'm broke and don't want a parasite test, and hear they're not even accurate.
My violent psych reactions to antimalarials tell me its not a mental illness, especially since the reaction is mental and physical (cannot see, disorientation, etc.). If I have to risk a psychotic break and being put on anti-psychotic medication and going through the whole system, I would like to know I'm doing it the best way possible, however.
I've thought about
IV antibiotics, but do I even have the borellia bacteria? I'm becoming concerned the bartonella positive was a false positive. I also have two cats and mice in my house and could have easily caught a parasite. I do not remember a tick bite/rash, etc. I have some markers for mold but honestly don't think that's the problem. The reaction to antimalarials is so severe I feel it must be parasitic/protozoan.
I guess my main questions are, to those with severe, and I mean severe psych symptoms, how did you muster through it? My doctor has treated schizophrenics but is mum about
how they did it, without losing their minds. He is not very communicative. I am considering seeing a psych who deals with Lyme but he is far away.
Also, would you still think I have bacterial problems? I mean, I have done rifampin, levaquin, mino, doxy, tetra, zithro, with almost no reaction. Samento, banderol, etc. Can CD57 be low in other illness? Like parasites or malaria?
I hate to go to the internet for these questions but I am desperate. No one can seem to help me. Isn't that the story of everyone with Lyme, lol.
I've also heard antimalarials suppress immune function. However, the reactions to mepron and plaquenil were exactly the same, and the one to plaquenil happened in 36 hours. Really, really fast.
I did mepron for a while with zithro after I had a full blown episode, but continued with it on an antipsychotic. It did not get rid of head pressure, brain fog, etc. And it obviously didn't kill it, because I got off the psych drug, and a year later went on plaquenil and had the exact same reaction. Nearly having an episode.
I hope ivermectin works, I've heard good stuff, but am honestly scared to death. But I need to get better. I know bartonella can cause psychosis, but I mean, there were no antibiotics involed-isn't bartonella a bacteria, not a protozoan?
Sorry rambling a bit, but thanks for reading and any replies are welcome (I will take any info, or suggestions). And happy holidays all!