looking for some support

hey everyone,

First time posted here, really feeling lonely with my medical situation and feel like I am getting worse and worse every year that passes. I would like to summarize my story over the past decade or so and get some opinions on a question that I cannot get out of my mind. Ill start with a brief description of my history and medical findings:

I am 27 now but when I was 13 my memory started to fade and I became very anxious around people. That time period is vague to me, but that year was the start of a long downward spiral in what would be chronic episodes of depression and gut wrenching social anxiety that has only gotten worse over the years. I have a picture in my head of this time period in which I am clutching my head in a sort of confusion and pain while wondering what is happening inside of me. It seemed like I couldnt remember moments with friends, responsibilities, or what I did earlier that day anymore. From there on through highschool the social anxiety grew worse and by college I was falling into deep depressions that would last a long time. I would meet with doctors and describe my symptoms as brain fogginess and social anxiety that I felt put me in depressions because I felt like I could not cope with the world around me. I went through several episodes of fever and tonsilities as well as a case of MRSA throughout college. Usually the tonsilitis and MRSA were treated with antibiotics, which I have always despised. This was also the time I developed hypothroid issues which now I know is Hashimotos autoimmune related. Anyways after many years of this downward spiral, many different doctor opinions, and many different alternative pursuits I started to get desperate, so I looked into shamanism. In Feburary of 2013, I went to Peru and took place in shaman circles because I thought there might be a chance it could help. Long story short is that it was an adventure but I felt that it did not address my symptoms. Also, I got destroyed by mosquitoes and came back to the States with another MRSA infection in my leg, treated with more antibiotics.

I continued meeting with doctors in 2013 and in October was tested for borrellia via Lyme WB which has now come back Igm positive 3 times with 3 different labs including igenex. All tests have been positive on very borrellia specific bands. I also tested positive for previous exposure to Epstein Baar, but no other coinfections have come back positive. We also did stool tests which shows an overgrowth of Chlostridum cultures, low in the lactobacilius cultures, a couple cultures that shouldnt be in the gut, as well as indications of yeast in the gut (through Doctors Data lab, I am not sure how significant this piece is).

Anyways, I really am just looking for support as I have been feeling quiet alone and down the past couple weeks/months. Also, I was wondering if anyone knows if I could have gotten this is Peru from mosquitos or does this come from ticks?

When I was 13, when I can recall all my symptoms started, was when my friends and I were always in the woods getting bite by plenty of deer ticks. I also had a very severe fever at this age which was diagnosed as a pneumonia but dont ever remember a bulls eye rash. The question that is on my mind is, could this positive lyme test explain my past or did I get this in Peru?

Do any of you feel that you have borrellia induced social anxiety and could you describe how it feels to you? (I only as this because its hard for myself to describe). My doctor has mentioned that it these infections might have the potential to induce some sort of autism like or asphergers like reaction, but I understand there is controversy on that view of lyme disease. I feel very stuck in life so any thoughts would be greatly appreciated. :(

Welcome Heinz T, and so sorry you're having a rough time. Many of us have been on a similar roller-coaster ride.

Regarding whether Lyme can be spread by mosquitoes or not, the "official" answer is, "no," but "official" can mean the CDC, university researchers, and what not. I think some practitioners do believe it can be transmitted by mosquitoes. I, personally, have no clue. My guess is that ticks are the more likely answer, but I can't pretend to know.

And I don't know if anyone else really "knows" or not. So many new things are coming out about Lyme.

What many of us do know is that a lot of these diseases--ie Epstein Barr, Hashimoto's, etc.--tend to occur with Lyme (in the same individual). I have an immune globulin deficiency, which the nurse who did my IG ivs said I had for life, so I figured I got all those illnesses (I don't have MRSA) from the immune globulin deficiency. But Horowitz has just written a book providing more compelling links between all those illnesses. Many people, including Horowitz, think that a number of illnesses are linked by environmental toxins, like molds and heavy metals. I grew up in the South, where cotton fields used to be sprayed with pesticides by plane. Many people I know who grew up in that region are now sick.

Speaking of MRSA, you need to get checked for an IG deficiency. MRSA can really be helped by Immune Globulin IVs.

I don't have social anxiety, but I have a number of cognitive and mental issues that I never had before I got sick. I almost finished my Ph.D. in English, and then at some point, I got to the point where I could barely read a book. I read now, although I'm easily distracted. I used to be very shy, and now people accuse me of having a motor mouth and of talking too much. I was very motivated by academics growing up, and now I have something like ADD. Once you get Neuroborreliosis, there's no telling what Lyme will do to your brain.

I would ask your doctor to give you more info. on Lyme and an autism-spectrum disorder. I've heard autism linked to all kinds of things, including environmental toxins.

If you have MRSA, the chances are good that you do have some kind of immune deficiency. Be very very careful about antibiotics. I had C. Diff., and it almost killed me. How does your doctor propose to treat you? Whatever you choose to do, take plenty of probiotics and drink a lot of Kefir.

You are in good company here. I have been very depressed recently, and a lot of the people in this forum have kept me going. It's hard, and you may always have bad days, but a number of people on the forum have had excellent results with whichever treatment they chose, (abx., herbs, etc.). I am trying to be motivated by some people's inspirational stories.

My attitude is to fight, and I'm hoping I'll be able to keep fighting. For some folks, "fight" is the wrong word. Other folks turn to God or the church. Do whatever you need to do to keep going, and get as much support as you can.

Margaret

Thank you teragram, the c diff is included in the next round of testing, if it comes back with high amounts of c. Diff, I am to look into get a fecal transplant which my doctor is aware of and on board with. I too grew up in the south, Georgia, where all my tick bites have come from. Thanks for the support ill look into immuno globulins.

heinztomato - it sounds like you are on the right track. You have already found a LLMD (which is far better than what I had in the beginning). Please be prepared for severe Herxing (both with your yeast meds, but also with your upcoming ABX). This is normal. Since this isnt your first Herx, you probably already know this.

Good luck with your treatment and keep us posted.