SSS

Good for you, it is awesome all the testing you have been able to get done- Sorry, I don't know about the other, didn't mean to just state the obvious.

What makes you think there is a problem with mold? Your high C4a could be inflammation associated with infection- and you've got high strep titer, and high myco. Is he on antibiotics to try and bring down those infections?

*Hey Mama2Alex! I did call our mold inspection people- they sort of hemmed and hawed, didn't know what to say, because they checked EVERYTHING here, and found 0 visible mold anywhere, except the garage, which we had them fix/remediate. So-- I bought one more Hepa air purifier on sale from Costco, will put that one in dd's room, take the 2nd larger one we ordered and put it in the family room, getting a hand held vacuum from Target today and will crawl under heavy beds to vacuum, vacuum all the high shelves in closet, ladder to get to the top of the kitchen cabinets, and then I am DONE! DONE with the mold thing! (keep using our CMS powder)

After researching it, and considering price, we went with 2 Winix 5500 covers 350 sq. feet, pre carbon filter, washable true hepa filter captures 99.97% no harmful ozone, quiet. I did not want an ionic.

I did buy 2 good Hepa air purifiers (Merry Christmas) and will put one in dd's bedroom, one in the master bedroom. My DH is the computer guy, not the tool guy, and hiring someone to come in and start taking things apart (after we already have had a mold inspection) is not something I'm willing to do- so this is where we are at- best we can do.

LOL! Okay, I'm too broke for all this jazz, since we had the MTHFR genetic test some years back, and dd is A1298C ++ (both genes) I am just going to buy Yasko's RNA formula A1298C, for $85 bucks, give a little dropperful each day, and poof! All fixed ;-)

Not very fun, is it? I'm sorry :-( This whole mold issue has really, really stressed me out. I guess we just take one step at a time, do the best we can. Maybe move your air purifier into the family room for the time being?

On my report, it lists all the types of molds, then says: ERMI score. My graph shown goes from -10 to 20 but anything after 5 is colored red- meaning what, danger zone? So how'd you do?

Well crud, now I want to do Yasko's test and just have her tell me what to do- $$$$$$. We did the genetic testing on dd, we have an issue, 2 Dr.s comment, still not sure what I'm supplementing is correct-

Philamom, one of your gene pattern is 7.3.53, which is a mold only susceptible gene. The other one appears 'normal'. P.S. If I knew how to cut and paste from my iPhone, I could show you a key to the genetic patterns.

Our Dr. told us the 'dreaded' means trouble detoxing BOTH Lyme and mold toxins- my daughter has 1 gene of the dreaded 4.3.53 :-( Other one is normal. I haven't had this test done, and frankly don't want to, and am not going to, would rather put the money somewhere else. Already doing detoxing with CMS powder and many other things. But our Dr. said these genes are related to the ability to detox effectively Lyme, mold, or both. But this all comes from Shoemaker.

I'll just add that the HLA test does not tell you or mean that you do have Lyme, don't have Lyme, do have mold, don't have mold. It simply means IF you had these issues, you may have trouble detoxing them, depending on your results.

tpotter, I'm so sorry you are going through all this! I have no idea if this will help or not, but what about the herbal tinctures? For my own bartonella, I did about 7 weeks of Levaquin, dropped it to start combo of antibiotics for Lyme. But, I am taking Byron White A-Bart and Beyond Balance Bar-1. I am up to 9 drops each 2x a day, and I feel like I am herxing Bart. I put them in a little water in a shot glass and down them. For dd6, I fill a small syringe 1/2 with water, put back in shot glass, add her drops (only 3-4, she herxes, too) and back in syringe, directly in her mouth, followed by her favorite drink. It's something, and doing 'something'...

His assistant, Scott Smith, handles PANDAS. There are several Moms who have been helped tremendously by SS. He also has his own infusion center. I telephoned consulted with him, and got very good advice, IMO.

Isn't CVID where you do the immune panel tests, and if your IgG, IgE, etc. is indeed low, then the insurance companies will pay for IVIG, because this is the treatment? I think if you do have this issue, than the immune panel tests are run periodically (4-6 weeks after IVIG leaves the body) Anyway, we do have Lyme and company, with positive tests, and not from wrong bands reporting, but in my case a blood PCR test, and positive antibodies. Dd's first IVIG was like a large herx afterwards- no improvement- so we did a 2nd high dose IVIG 6 weeks after the first- (and there were no immune deficient markers on the immune panel, so had to pay cash for both) The 2nd one was totally different than the first- beautiful relief right away- dd was happy and content-a wow! then it started to fade, all gone back to square one when it left her body completely at the end of 4-6 weeks. Our current Dr. thought the 2nd one might have provided relief from her viral issues. We pulled tests for viral, we have those- now take a pill a day to tamper it down- We also found detoxification issues (HLA test) and MTHR issue- all this can factor into not getting well, *sigh*

It is typical that when a new antibiotic is started, there is a herx/die off reaction. Are you doing anything to help her detox?

Well, I just spoke to the VP of the ERMI company, who talked me off the ledge a bit. He recommended getting an air purifier for each room.

I don't mean to whine, I know some on here are going through incredibly tough times. I am struggling through my own Lyme illness right now- on many antibiotics, herbs and detox, trying to keep my head above water to take care of my 3 kids, 1 with Lyme and company herself- keep our house running. I do have a good husband, but he is working long hours, stressed- etc. Okay- I had the mold inspection - thorough- issue in garage fixed under water heater- got rid of our mold washing machine 18 months ago, new top loader. Change my filters, uncluttered clean house. Air samples came back with 'some of the cleanest air we've seen' ERMI test: 2 rooms, dd's and my bedrooms. One came back a 3, and one came back a 4. 'Homes with a level 3 are more likely to have a mold problem, homes with a level 4 are have the greatest likelihood of having a mold problem.' (quote) I can't handle this. I am not leaving my home. I don't have more money for all of this. Financially, we cannot leave. I am so frustrated with all of this. The mold inspector found no evidence, anywhere, of mold inside my home. No basement, single level.

Sorry, deleted post, just a vent-

Have you had your thyroid fully checked? That is what I always think of when I hear hair falling out- Biotin (B vitamin) is great for hair and nail growth.

Thank you for the feedback, much appreciated- I am going to try and push through this with her on the weekends- It is REALLY hitting infection. We will see how it goes, whew, it is rough, but *maybe* a tiny better than last time since I am using detox powder 2x a day now, and breaking from herbal drops on the Tindamax days. I haven't been on Tindamax yet- on many other things currently, rough for me too. Found an inexpensive 1 hour massage I am sneaking out to get this morning- Hope I can get off the table and make it home ;-/

We are new to Tindamax. Tried 5 days of it (was suppose to go 7) Pulled her off, it was crazy wild. Told to detox more - okay, I have been. Tried again this morning with 1/2 tablet, want to see if she can go 2 days, start a weekend thing. The reaction is immediate, another difficult day. Does the reaction go down the more weekends you get in? Thanks-

I would not give nystatin with probiotics, but with the antibiotics. I believe if you want it liquid or in capsules, you'll have to go to a compounding pharmacy- The red tablets are what a regular pharmacy dispenses.

*Olive Leaf Extract (OLE) may help...

Alright, I need some gratitude (great post LLM) I am very grateful for this board. I have learned so much from everyone, and have been helped tremendously. An extremely astute and intelligent group, and I am touched by the support I have received. It's been a heck of a year. My daughter has made progress- we finally have some answers to her that have plagued me for years. I'm grateful to my supportive husband, our home we have made here, even when it is loud and somewhat crazy. My daughter is doing well in school. I am not physically impaired to do life, albeit extreme fatigue, and I have hope that I won't always feel this way. I wish everyone a wonderful Thanksgiving!