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My DD9 (PITAND) seems to be having yeast struggles after 6 months of antibiotics. I'm thinking of doing the

GAPS diets along with going to natural antimicrobials/antivirals instead of our Augmentin. Am I crazy??? :-)

Please tell me what has worked for you. I'm going to put all 5 girls and myself on GAPS starting this Lent. Hoping it makes

a difference. We've done SCD for short periods of time and found it really beneficial.

 

Thanks in advance...

Holly

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I don't have any current personal experience to share, only that I am considering a similar approach. I have heard of antivirals like Olive Leaf Extract (OLE) and others like Virastop that have done wonders with OCD/Tic/PANDAS issues. We've been working on dd's gut health for over a year -- so far it seems to be serving her well. A month in with abx and her gut is fine, if not better than before.

 

In terms of going off abx, I'm keeping dd on zith for another couple months, but trying to keep building up her gut health at the same time. I recently added colostrom to our current regimen, got a better probiotic, and started Enhansa. By the time our 3 month Rx for zith is done, I hope dd will be in a stronger place, and then start anti-virals after school is out in May.

 

Have you seen this account of using anti-virals: http://danasview.net/virusrec.htm ?

 

If you do go ahead with this, I'd be really interested in hearing updates on how things go for you. Does your dd have a tic? My dd never had one before the last couple months, which is one of the reasons we realized we were dealing with possible PANDAS.

 

Are you working with anyone or trying to navigate this on your own? What, if any, tests have you already had done?

 

Malke

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Hi there...

 

I'm working with a couple of docs (Dr. Rao - where we get our augmentin, and Dr. Infante - where we get IVIG). She has OCD and tics as well as dyslexia/dyspraxia, occasional rages, and hyperactive behaviors. I've been wanting to try more antivirals since after every virus we have bad exacerbations. We've done the Cunningham test and her Cam score was 139. Her anti-dopa 1 was elevated. The Igenex came back "negative" but we're still open into looking into lymes in the future. We've been on antibiotics for 6 months. So far, we've had 3 IVIGs and have seen improvements. However, for about 2 weeks after each infusion we have some pretty bad times. :-(. I'm always attracted to "natural" means and am willing to give it a go. I'll let you know what we come up with. Thanks for the info!

 

Holly

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Are you working with anyone or trying to navigate this on your own? What, if any, tests have you already had done?

Malke

 

hi malke and texas. i fully understand where you are with the desire to treat naturally. ds is following a bit of a different path than most on this forum so i'll give you my thoughts. we are seeing an integrative MD who uses homeopathy. my overriding thought is that it is important to have a knowledgable voice that you are following. of course, with pandas, it is hard to know what is that best knowledgable voice. i just think it is very hard if you are trying to do it yourself. it's hard enough that we have to be advocates, researchers, deciders, etc -- but doubly if you are trying to be the be all, end all. i am quite confident with what we are doing, yet still question when i hear things -- i.e. should ds be in IVIG study, etc.

 

when ds first presented, we saw our traditional ped -- who was fairly useless. a behavioral therapist suggested pandas and he had high titers and positive culture. a 5 day course of azith was horrible (possible herx from lyme - ?). we switched peds, sinus CT showed all cavities infected, 30 days keflex/nystatin = about 3 days 100% remission. at this time, we were also seeing a naturopathic dr. she ran an IGG that showed severe reaction to over 15 foods. she didn't fight me on the initial azith but used the fact that that was so horrible to fight me on the keflex. she thought the food reactions were causing the trouble and not allowing his body to fight infections. i thought he needed more help to fight the infections --that she wasn't giving enough weight to the infections being a source of trouble. we parted ways with her.

 

he relapsed after about 30 days off keflex. went back on -- saw improvement but not the dramatic reversal of before. our ped was slightly familiar with pandas but not so much with treatment methods. he thought we'd hit the strep hard and it shouldn't still be there necessitating more abx. i went searching for natural options. we found pleo sanum homeopathy and i found a practitioner who used them and did cranial sacral therapy (he's an PT and ND). we saw some improvement - but again, not 100%.

 

ds relapsed with a flu and took a long time to pull out of it. i thought about 4 mths -- during that time, seemed okay at school, not at home. then improvement -- or so i thought -- it just switched. he was now okay at home, not at school. i then asked dr if we should revisit lyme (previous western blot was completely non-reactive). he referred us to our current MD. this was about a year ago.

 

current dr does a type of ART testing. he diagnosed ds with lyme, strep, toxoplasma gondii, cmv infections along with other issues --- fungus, parasite, metals. it's been an up and down year. ds has improved, regressed. he had a horrible herx-like reaction to an anti-viral in july -- classic, contamination OCD with non eating. there is no way we would have made it through that with out our professional dr's help. i guess we would have actually b/c it began and ended without real intervention -- however, psychologically, we needed support and it was helpful to have dr observing ds. dr believes that is something that would have surfaced at some time in the future if he wasn't being treated. during the fall, ds had fairly intense sensory issues. a change in meds brought changes in that.

 

according to me, i'm not sure what i think of progress. he's not in crisis or exacerbation, but he's not 100% healthy either. according to dr, he sees much progress. it can be a long process of riding of all these infections, which is happening, it's just a long process. and, recently, he had an uptick of some behaviors and tested for the presence of CMV again. we have seen improvement when adding that remedy.

 

he's very recently (i'm reluctant to post but can't help myself) doing quite well. may be a reverse canary effect b/c ds9 presented symtpoms in Nov/Dec and has been to same dr. we've seen improvement with him in the past few weeks which seems to correspond to ds6's time frame, too. we see dr this week.

 

SO -- my point is -- how would i possibly have followed this type of path if trying to devise it myself. i honestly believe there's no way i could. even with trust in our dr, my head still turns when i hear something like enhansa (malke -- please keep me informed about that). for now, we are following our dr but i put those things in a file for the future and will discuss later.

 

texas -- are you considering doing this yourself or following someone's guidance? have you considered homopathy? i beilieve stephanie2 was researching a homeopathy group in texas that sounded interesting -- ?

 

good luck and keep us posted.

Edited by smartyjones
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I agree with Smarty on this one. It can be done but you truly have to be under the guidance 'initially' of someone very experienced in what is helpful. It is not as simple as just adding Olive Leaf Extract. I know our LLMD treats without antibiotics and he has an arsenal of herbs for specific infections, understands clinical diagnoses, years experience, etc. Our younger son is herbal mix to specifically treat Babesia plus antibiotics and it too creates a herxing response just like an antibiotic which can be very scary if you are unprepared.

 

I actually do yoga with the individual that created this particular blog - Alix. She is being treated by our Dr. for over 1 1/2 years with just herbs and was sick for over 14 years and still has symptoms. If you think understanding PANDAS/Lyme is a daunting task... Understanding a homeopathic resolution is a whole new realm and commitment. Happy reading. I also recommend watching her video on her own story. She too stresses the importance of detox.... just as important as treating.

 

http://www.mednauseam.com

 

Perhaps start with what it means to detox toxins and body function via PH balances (both via food/heavy detox)....... If you should continue with antibiotics the detoxing aspects will help tremendously. Dr. Klinghart has a lot on what it means to just detox.

 

http://www.klinghardtacademy.com

 

-Wendy

Edited by SF Mom
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I know this is Holly's thread, so I apologize, but I appreciate Smarty and Wendy's input on the subject. For us right now I am trying to find someone in both camps (integrative MD and Immunology) to help us. I knew about four months into changing dd's diet last year that I needed more help and support so I looked for a DAN practitioner. However, I also did a tremendous amount of work to educate myself and ask questions so that we could have the best possible results.

 

In the end there is no one but me who has the big picture on dd's health, but I know I can't do it myself. I'm the manager though, and I have to make decisions on the fly sometimes. I have made the choice start Enhansa based on the personal experience of 3 friends who have used it with their kids. These are mamas I trust. I made the choice about colostrum after talking with our holistic nurse practitioner who said you really can't overdo colostrum, so I knew it couldn't hurt and the possible benefits could be very positive. I do agree that I need someone to lean on, it's just that in Indiana those people can be few and far between, and there's no one person who can do it. (So far -- I've just started looking!)

 

The last thing I'll say is that everyone has their own personal opinions/suggestions for which medicine, which supplement, which herb, etc. makes a difference; to counteract the overwhelmed feeling I get when I see a list of other people's supplements and medicines, I have made it a rule to never add anything unless I know what it's for, what kind of improvement or healing I hope to see, or what my goal is for that particular med/supp. I also found the Organic Acids Test to be super helpful in making decisions about what to drop or add and I hope to find other tests that will help focus our PANDAS healing process in a similar way. This kind of focused, deliberate decision making approach has helped me feel safe about relying on my own judgement between visits with the experts.

 

all the best to all of you,

Malke

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My DD9 (PITAND) seems to be having yeast struggles after 6 months of antibiotics. I'm thinking of doing the

GAPS diets along with going to natural antimicrobials/antivirals instead of our Augmentin. Am I crazy??? :-)

Please tell me what has worked for you. I'm going to put all 5 girls and myself on GAPS starting this Lent. Hoping it makes

a difference. We've done SCD for short periods of time and found it really beneficial.

 

Thanks in advance...

Holly

Hi there! You are not crazy :) My take is: do what works! My ds is on 3 (yes, three) different abxs for Lyme and co-infections, and still struggling with PANDAS symptoms. We just went to see a natural practitioner who muscle-tested him and all three abxs put together do not make him strong against whatever he is fighting (supposedly, Babesia and Rocky-Mountain Spotted Fever). She added "Thieves Oil" to it, and then it tested strong. So, we are going to be adding that. My suggestion would be to find a good naturopath to help you decide, there are so many natural options out there, and it can be hard to figure out which one and how much to take. The usual dose for Thieves Oil is 1 to 2 drops daily, she tested him and he needs 10 drops daily, which I never would have done without testing. We are very blessed to have someone we can trust who is a Christian and is always putting God into all she does (I'm just saying, be careful where you go, there is a lot of New Age stuff out there).

Pray that God will show you what to do.

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