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Feeling disgusted


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I'm feeling disgusted. I had such high hopes when I went to see Dr. T in New Jersey. He said I don't have Lyme or coinfection. I had:

 

1. Strep titers still high at almost 1000

2. Low B12

3. High HHV-6

4. High proline.

 

He said my immune system doesn't look like that of someone with PANDAS, but he also said that he does not have experience with adults. I feel silly that I even went there now, since I'm an adult. But I KNOW I had PANDAS as a teen, starting with eating issues/disorder at 12 and then overnight onset OCD at 14 after I started kissing/having contact with an adult boyfriend. When I first read about PANDAS, I was like OMG this is what ruined my life.

 

I also have had suspected rheumatic fever and glomerularnephritis.

 

He put me on 10 days of Rifampin and Clindamycin four times per day.

 

He told me to take Valtrex, but did not elaborate on this.

 

I still feel like I have meningitis/stiff neck/headache sometimes.

 

I have been having diarrhea/explosive diarrhea, which I hope is only due to the antibiotics. I asked him to speak with my psychiatrist directly, since all the tests he did were so far beyond my medical knowledge, and probably that of most doctors.

 

I just feel disgusted and frustrated. Even he didn't actually diagnose me with anything.

 

As an addendum, I'm really starting to think that my hallucinations weren't due to psychosis at all, but rather to some sort of seizures, as I think I had auras (smells) before the visual hallucination. Also I had like an altered sense of reality in that I saw some things going on in slow motion (for lack of a better way to describe it). I think it's called derealization. I was also super hyperreligious and almost felt like I was foretelling events before they happened. Before I had had hallucinations and all this craziness, I had been ill with suspected glomerularnephritis with a low-grade fever going on for like six months and took one month's worth of penicillin.

 

I just need some input please. What does everybody think the next step should be? I kind of don't want to even call Dr. T again because I just feel like I'm out almost $400 (which is a huge sacrifice for me and my family) and nothing definitive other than the antibiotics came from the appointment. I knew I needed antibiotics before I even went, but the damn doctors were just unwilling to prescribe them.

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I'm so sorry for all your going through. I just wanted to comment about the diarrhea. If accompanied by cramping, you may want to run a stool sample to check for c-difficile -toxin a & b.

Also, you may want to add in Florastor.

Edited by philamom
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Ditto on the stool sample. C. diff can cause all kinds of nasty psychiatric problems. It can raise your dopamine very high, which causes lots of problems. Also you should do The Great Plains Oat Test, which is a urine test that would show metabolites for yeast, clostridia, etc.

http://www.dailymail.co.uk/news/article-2419418/Low-levels-healthy-gut-bacteria-cause-mental-health-issues-anxiety-schizophrenia-say-scientists.html

 

Low B12 can cause psychiatric problems as well. I read a case study that a young man developed mental and some physical issues, and found he had H. Pylori that caused a B12 deficiency. After treating the H.Pylori infection and getting B12 injections, all of his symptoms went away. (We tried this, but it was not effective for my dd - she has more going on, but it's certainly a start.) BTW - my dd also had a positive H. Pylori test - with none of the usual symptoms.

http://evolutionarypsychiatry.blogspot.com/2012/11/b12-deficiency-and-psychosis-case-study.html

 

BTW - my dd has c.diff right now, without any cramping. She's not even got diarrhea - she has severe constipation. She originally had a different species of clostridia, but now has the c. diff.

 

Your results showed you have a lot going on that needs to be treated. You need to find a functional medicine doc willing to do all this testing.

 

I don't know anything about Dr. T - but am very disappointed in your experience with him. I'm not sure where you are located, but Dr. James Greenblatt is in Massachusetts. (He is mentioned in the article link above.) If we lived close, he'd be the doc I'd want to see. He understands the connection between mental illness, gut issues and deficiencies, and has written a lot about that.

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