searching_for_help

His antifungal is Nizoral, and yes, he's been on antibiotics off and on over the years, most recently Doxycyline. He has never been on Dilantin, but due to an MTHFR mutation, I do give him methylfolate and have for several months or more. We'll see how he does on the Nizoral. Also added in something called Candex. I'm just curious to see if the gut overgrowth of yeast is associated with the red gums. I guess time will tell.

I called the lab about the HLA testing. According to doc at the lab, our dd's results were specific for mold and marcons, but she didn't have the one for trouble detoxing Lyme. I didn't know about the glutathione - thanks for mentioning that. I'm kind of getting caught between the advice of two different doctors. One wants to treat for mercury - he just suspects it from her genetic snps - we have no proof she is high in mercury. The other doc was nice enough to order the cholestyramine due to her mold HLA snps. She had put dd on high doses of NAC, but the other doc said NOT to take NAC due to snps (possibly CBS? I can't remember....) But honestly, at this point, I'm not sure I can even keep her out of a psych ward to do any of this. Her anxiety, OCD, restrictive eating, etc. is so extreme, and she's gone from sad, wanting to die, to mean and argumentative. I think I might break before she does.

Thank you both. I very much appreciate the info. I guess we're going to start it Monday. Honestly, things can't get any worse than they are. (But I've said that before and been wrong...) Does anyone know if this can cause a herx? I'm assuming it can, and not sure we can take ANY worsening of conditions.

Thanks, Sheila! Yes, we did get his stool results and he is very high in yeast. I had him gently brushing his gums and using a natural mouthwash, and for a little while his gums looked better. But I just noticed they are getting red again. The only meds he has been on are abx and supplements. He has been on an antifungal for a few weeks now, but still seeing the redness, and he also has what looks like a fungal type rash on his upper thigh. Oh, the fun never ends...

Has anyone used cholestyramine to detox from mold? DD has HLA gene for mold, and we are considering starting this. The RealTime mycotoxin test will run $700 - so we're not even sure we want to do the test, but hate to use the Cholestyramine without knowing for sure. I really don't know anything about it, which makes me a bit nervous. Any feedback from your experiences would be appreciated.

T. anna - please keep us updated. Hoping for the best!

My dd's eating issues and OCD are the same way. All her intrusive thoughts are around food or exercise, or how our schedule might impact her food or exercise. She has had this for 10 years of more. We haven't found anything that will help. She's still upset that she ate a big meal on Sunday. The thoughts that she shouldn't have eaten it just won't leave her head, and they literally torture her. Needless to say, she's not eaten much since then. So I'm interested in whatever ideas are out there, too. One thing that really gets me, is in EVERY other area of life she is brilliant and completely rational - more so than me! She absolutely knows her thoughts about fearing food is irrational, but the panic that happens is not something she can shake off. You can literally see the fear in her eyes, like a caged animal. I'm so sorry your son is going through this, too.

Never mind! I called Labcorp HLA customer service and they were absolutely awesome in helping me. Looks like possible situation with Mold and MARCoNS - now I have to research that. I know dd has a true mold allergy, so that is possibly one more piece of the ridiculously large puzzle...

Received HLA DRB test results from Labcorp. Have no idea what we're dealing with. Not really even sure what the test was run for, but am thinking it has to do with how well body can detox? So please, if someone can help me (again!), I'd appreciate it. DRB1 DRB1*11:UYRP DRB1 13:VSJA DRB3 DRB3*02:UZTG DRB4- DRB5- DQB1 Allele 1 DQB1*03:UZMF DQB1 Allele2 06:UZNE Not sure how long before we'll hear from NP - as she is on vacation. Even if someone can't give me details, does someone have a clue if these results show problems for my dd? She has so many issues, none getting resolved. So many years. We're all so very tired...

What kind of test was it? The reason I ask is, the Great Plains Oats test has as asterick by B12 and some other vitamin markers, indicating that a "high" value for that marker may indicate a DEFICIENCY of that vitamin.

You can get 15 mg. pills. We don't cut them in half. They're tiny little pills.

I don't know much about Lyme, but I was thinking IF he has lyme, he shouldn't be on an immune suppressant. Could someone else pitch in with their knowledge? I'm thinking maybe LLM or someone had stated that before, but I could be wrong. I just remember thinking someone said you don't want your immune system suppressed if you have Lyme.

philamom - my 22 year old dd (who is very underweight for her age) is taking 15 mg. Armour Thyroid once a day. She just started a few days ago. Hoping it will bring her temp up - it's always been ridiculously low.

Needing help (again...) What does an HLA DRB, DBQ disease evaluation show? Doc ordered this for daughter, but if it's just a genetic thing, we already know she's allergic to mold.. Doc office is too hard to get a hold of to ask. Hoping one of you can help!

I'm curious about this too. My dd was just prescribed Armour Thyroid for low thyroid. Haven't started it yet.

beeae22 - You mentioned your dd started eating on day 12. I was just curious - how were things from day 1 to day 12? Any herxing or worsening of symptoms? Or did things gradually improve? Just curious. Our dd started minocycline 6 days ago. We are actually seeing a worsening in symptoms, but she tends to herx on new meds. We're still holding out hope, but getting very tired of all of this. It's actually been a bit harder to get her to eat the last few days. Hope your dd continues to improve!

I am SO VERY HAPPY for you! Gives us some hope when things aren't very good around here.

Hubby's ASOtiter is still positive, but throat culture negative. Should he still be taking abx until he gets a negative ASO? I'm concerned he could still be affecting PANDAS/PANS dd. Any thoughts?

Oh, yeah - I totally understand. Just knowing WHAT you are dealing with would be such a huge step in making progress! Glad you have some answers. Hope the diet change brings good changes.

Another thing, make sure you are taking some good probiotics while on the antibiotics. Don't take them at the same time, though. The viral stuff can be an important part of this, also. I know some on here have seen good improvements while treating with antivirals.

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.

qannie47 - your mailbox is full! I'm trying to send you a pm.

OK, so hubby keeps testing positive for ASOTITER. He did not have any symptoms of strep, but due to dd PANDAS/PANS, I made him get tested. He had been on Augmentin, but is still testing positive. Could this be causing problems for dd? Should we treat the titers like we would a rapid or cultured positive test, and treat him until it's negative? Would this mean hubby is a carrier? If so, what is the best way to eradicate my problem hubby? Sorry, I just couldn't resist wording it that way! A while back, dd kept testing positive for throat swabs and cultures, after like 4 different abx, so I assumed she was a carrier as well. But hubby has no psych or physical symptoms, and dd had no physical but lots of anxiety, OCD, etc. etc., awful etc.

I ran across this new Lyme test called iSpot. Has anyone tried this? https://neuroendoimmune.wordpress.com/2013/09/19/lyme-disease-study-from-pharmasan-labs-selected-as-2013-feature-paper/ https://www.neurorelief.com/content/engine/spaw/uploads/files/White%20Papers/iSpot%20Lyme-%20A%20New%20Generation%20of%20Lyme%20Disease%20Testing_1.pdf https://www.neurorelief.com/index.php?p=cms&cid=486&pid=149

Dd is on 400mg a day of Doxycycline for MycoP. Has anyone else experienced weight LOSS on this drug? She's on lots of stuff, but her weight has been dropping since we started this and several other things. She's not eating any differently, and although anorexic, I'm beginning to think it's one of her meds and NOT ED behaviors. She started Valacyclovir around the same time, but I don't think that would cause weight loss.