Is it really Lyme? Need advice for impossible situation.

Hello all,

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)
-Neck spasms
-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
-Depression
-Rapid heart beat
-Depersonalization
-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!

Darwin

Glad you found us, sorry you needed to.

I agree with girlie. Maybe it's time to try and treat with herbals. I did great on antibiotics but knew that my body needed a break and I wanted to attack from a different mode after a year and a half.

Your reaction to treatment makes me wonder if you have mylation issues. I don't so I'm not well versed in that but others on here are. It's a bit slower than usual due to the holidays so be patient with us. If your post gets down to the bottom of the page type in bump.

Here is a link that is in the new to Lyme section. It is for a chart of all the symptoms for Lyme and all the co infections. Note that the chart is wider than the page so you need to scroll down to see the second portion of symptoms for each infection. www.lyme-symptoms.com/LymeCoinfectionChart.html Hopefully this will help you determine which infections you have. Even the CDC states that diagnosis should be clinical based on symptoms.

Thanks for replying guys! I really appreciate it.

So for the questions-I've been in treatment about 3 years. My LLMD is very skeptical of almost everything, and to everyone around, because I don't "look sick" and they don't understand Lyme (even after all these years-they're just tired I think, especially since it involves severe mental illness) they're not totally sold. It makes it difficult because I have no psych diagnosis so it's not like I can name what's happening but to me it feels very herx like-it's a distinct feeling of blood suddenly not getting to my head with severe confusion that happens only when I take the drugs. I did have an episode before at the very beginning when I first got sick and the delusions/symptoms are the same, so it's not some allergic reaction but a worsening of symptoms.

I failed the shoemaker test but have never treated for mold and don't really know what that entails. I should add, I don't have much time to waste, because if I can't get back to school by next fall I have to drop out. And this is coming from a previous honors student. I need to complain somewhere! Haha.

Anyway, I was on mepron for no more than 6 months, even if that. But I was also on an antipsychotic so if it was going to induce emotional symptoms I wouldn't have felt it, because the drugs numb your soul-withdrawals are also awful, I haven't been the same since, so I definitely want to avoid doing it again!

I am not sure what detoxing really entails. I try to not eat junk, exercise and drink a lot of water, but this didn't prevent it. I was also doing large doses of burber before I took the plaquel. And eating tons of milk thistle.

I am good on MTHFR for the main one but the minor one I'm homozygous. It's not the folic acid one, but the one that begins with A1...something. As for methylation I am not sure which genes matter (i did 23 and me). Honestly there are so many genes I'm not sure, but I talked to a guy online who was an expert on this stuff and he gave me three supplements to take, and they didn't make much of a difference. Honestly with my obsessive tendencies that stuff drives me crazy and makes me waste money on supplements I don't need. However, besides being obsessive (which could be bartonella), I fit the overmethyaltor one perfectly, and have all the COMT/ dopamine genes.

I have to add I had some liposomal arteminisin on hand and haven't treated anything but I felt I had to take something. It actually made me a bit more clear headed-enough that I could write this. I am willing to try herbs I just don't know which one-so many, so much marketing, so many charlatans. But the arteminsin is the only one I've taken that gives me a response. It also has EDTA in it. I test negative for metals though. I know it can break biofilm too.

I've always wondered about mold-I have low VEGF as well. I'm not sure, it seems there are so many protocols. I'd love to know how long it takes anti malarials to suppress the immune system but cant seem to find anything. Thats why I think trying ivermectin would be good-it treats protozoa and doesn't make your immune system shut down, but god forbid I kill something! D:

Wow your body was going through puberty and lyme? That is enough to make you feel crazy. I was super depressed at a point in my lyme life. I cried so much and my eyes were always red. I am a bookkeeper now and I could not add 2 numbers. Math has always been super easy to me. Lyme put that in check. But just for awhile.

I did not take to well to pharmaceuticals. I hate side effects on double sided paper. I went with herbals. I researched and decided on Buhner's protocol. I got his book and just dug in and started. But I have to tell you I came here with a ton of questions and I have emailed a lot.

There are many herbal protocols out there. And if you want you can do antibiotics and herbals together. I think you need to talk to your LLMD and tell him you are anxious. Because you sound anxious to me.

I was VERY anxious and the first thing I had to learn about lyme is that it will take time. No one knows how long and it won't be easy. I had to learn to have patience. It was probably the hardest thing for me with lyme.

Detox!!! Read the thread New To Lyme?.......Start here! It has things you should do to detox. Detoxing removes the dead spirochetes from your body. An overload of dead bugs can make you sicker.

Hang in there and ask any and all questions.

I just wanted to say that I have had some quite severe psych issues since getting Lyme (I have no previus history). I initially started just treating Lyme, but this didn't resolve my psych issues. More recently I started on Bart treatment and after a hellish herxing period I can now say that I am getting better.

There are many folks here who are very, very knowledgeable when it comes to treating herbally - I am taking herbs for both Lyme and now Bart too. If I were you I would start having a look at the protocols, Buhners is the one I am on and you will find info here - http://buhnerhealinglyme.com/ and you can find the protocols here - http://buhnerhealinglyme.com/the-protocols/. Buhner also has a new book out which details all the latest herbal info. I would recommend it if you want to learn more.

Detoxing is a vital part of the healing process and I can't tell you how important it is to detox as much as possible. Read about the best ways in the 'new to Lyme thread' and get cracking. Personally speaking they helped with my pysch issues enormously.

Keep posting, keep asking questions and hang in there!

It sounds like the anti-protozoal agents killed so many pathogens that it overloaded your neurotransmitter pathway due to your COMT status and lack of biopterin. I'd but my paycheck you did have a mold issue and even if it is only a minor one, it burdens your detox pathways. Protomyxzoa and the other unidentified protozoans that are similar create a unique burden on the body. They are fat sensitive so reducing your fat intake is essential. I think pulsed fat ingestion may be beneficial although I've never tried it. We have to have fats to survive but fats contribute to biofilm formation. This cycle allows many different pathogens to survive. If you eat little to no fat for 3 days and then 50 grams of good fats for one day, I bet that would be beneficial but may cause a herx. Eliminating fat from your diet with a high protozoan load can cause herxes. Tell your physician the next time you have a psychotic outburst, check for hyperphenylalaninemia.

The diet is always tricky, and I think it depends on the person. The low fat diet helped me, and Dr F says for some of his patients it makes a huge difference (and they even herx when they transition to the diet), for others the benefits aren't there. It sounds like you are doing the most important things, avoiding refined/added sugars, gluten free, dairy free. You could experiment with lower fat, like cut out one thing at a time and see if it makes any difference for you. That's how I did it, first I cut out chocolate, then nuts, then olive oil.

But like you say, who knows! the key is you are doing the most important things in terms of diet. So much trial and error!

Haha the Rome part made me laugh, I love that quote and especially because you used my username which I chose because of my Charles Darwin obsession. He most certainly did not write "on the origin of species" in a day, hehe. :)

Sadly my biology studies have been put on hold and I am a lowly unemployed female, but we shall see. Also very type A and INTJ. Gosh darn.

Thank you for the diet recommendations too guys.

7 years is a long time for constant suffering, but I've seen people with far worse. Also, even though I long for death..I cannot do it. Far too painful, physically, and also emotionally for those around me.