Has anyone had success with natural treatments?

[Megan]

We are waiting to get my 6 year old daughter in to see Dr. L in MD and Dr. E in DE. In the meantime, we have a family doctor who has given us two different antibiotics to try. 3 weeks of Zithromax did not stop my daughter's sore throat and nightly tantrums. We then tried 8 days of keflex with helped her sore throat for the first couple of days and then it came back on the 4th day of the med. She had to stop the keflex due to severe itching on the 8th day. I am concerned that the antiobiotics will not be able to knock out the infection. Has anyone had success with natural treatments?

 

My daughter clearly has a throat infection but doctors don't see anything wrong when they look in her throat. But she is often spitting mucous because there is so much of it. She is not congested but I feel that there is a big infection deep down in her throat which is not visible. She continues to have very violent tantrums and personality changes every night. She has heachaches, stomachaches, blurred vision and hearing and skin sensitivity, which are all more pronounced during the tantrums. She has never had an elevated ASO or DNASE b.

 

Thanks,

Megan

[Christianmom]

My son's doctor, Dr. Schwartz, is an ART III doctor, trained at the Klinghardt Academy. He is near Philadelphia. He will treat with antibiotics if necessary, but mostly treats naturally. He is not specifically an LLMD or a PANDAS doctor. He would be able to treat whatever infection your daughter may have. My son's recovery has been slow but steady. He is on a natural antibiotic mix that was tailored specifically for him (as well as many other supplements). My son also has KPU and one C677T MTHFR mutation.

 

Dr. Schwartz's fee is low, but his supplements are high. (But my son has lyme which is very expensive to treat. Your daughter may not need to take as many supplements as my son.) He is a brilliant man who is treating two of my other children (non-PANDAS) as well as my husband.

[Megan]

Christianmom,

Thank you for your post. Actually I bring all of my children to Dr. Schwartz! We live outside of Philly and have had lyme disease so that's why we went to him initially. He has found strep in my daughter when no one else can (except our other pracitioner who does electrodermal screening). He actually recommended zithromax again for my daughter so we just started it up again but I am concerned that it will not work as it did not before. He says we need to stay on it for a couple of months. He is not seeing lyme or mycoplasma in my daughter now but our EDS practitioner sees mycoplasma and EBV which could be the cause of her joint pain.

 

Have you met with any PANDAS doctors or do you feel that your son's symptoms are improving so there is no need? Do you mind sharing which antibiotic herbs you are using? We tried silver and goldenseal for a while but it couldn't knock it out.

 

Thanks so much,

Megan

[LNN]

Megan,

You might look into N-acetylcysteine or musinex or xylitol gum or grapefruit seed extract. These things thin out mucus and are used to help treat biofilms. Here's a very long but very informative article on films and how they can make an infection impervious to antibiotics. http://bacteriality.com/2008/05/26/biofilm/

[junkyardjean]

We ended up going completely natural with dd4 (was 3 when this all started) - we made the decision initially because she has such a bad reaction to abx (serum sickness with amox, no growing with proph. pen v, severe abdominal issues with zith). It seems dd mixed with abx was making her physically much worse. Because she has always been so small, the no growing was a major issue...

 

We started seeing a naturopathic dr - started with constitutional hydrotherapy, then some homeopathy, then added dietary changes. Overall, it was slow, but steady improvement - after 6 months of treatments, we are now to the point where she is no longer reacting to random bugs and not getting tics/behavioral changes when she gets sick. That being said, she has not had strep again - that will most likely be a whole different ball game.

 

Working with the ND was much more comfortable for us - we are still very much connecting with regular doc as well, and I foresee a future of mixing the two perspectives when she has a relapse. Thankfully, our family doc is willing to work with the ND as part of dd's medical team, and has never made us feel like we were going to a "whack job" (phrase other specialist used when she met with dd for assessment purposes).

 

I wish you the best of luck - we step tentatively and quietly each day with hopes she will not a relapse any time soon. After feeling like we lost our dd for just about a year, it is soooooo nice to have her regular baseline self back.

[Megan]

LLM,

Thanks for the idea about the biofilms - we do give her grapefruit seed extract as part of her lyme treatment. I may add serrapeptase as I think that is a good biofilm breaker and we have used it in the past.

 

Junkyardjean - thank you for your post. How nice you have been able to help your daughter naturally. I hope to get to that point. Did you need the abx to get rid of the strep initially? I presume your naturopath is in Canada? I have not heard of hydrotherapy...what is that?

 

Thanks,

Megan

[Christianmom]

Christianmom,

Thank you for your post. Actually I bring all of my children to Dr. Schwartz! We live outside of Philly and have had lyme disease so that's why we went to him initially. He has found strep in my daughter when no one else can (except our other pracitioner who does electrodermal screening). He actually recommended zithromax again for my daughter so we just started it up again but I am concerned that it will not work as it did not before. He says we need to stay on it for a couple of months. He is not seeing lyme or mycoplasma in my daughter now but our EDS practitioner sees mycoplasma and EBV which could be the cause of her joint pain.

 

Have you met with any PANDAS doctors or do you feel that your son's symptoms are improving so there is no need? Do you mind sharing which antibiotic herbs you are using? We tried silver and goldenseal for a while but it couldn't knock it out.

 

Thanks so much,

Megan

Hi Megan,

So glad to find another person going to Dr. Schwartz. I just think the world of him. Not sure what to say about staying on the zithromax except that if I were you, I would stick it out. It is possible it is a different strand of strep this time.

 

In terms of Dr. Schwartz not finding mycoplasma, it has been my experience that he doesn't find infections when they are at a mild level. In other words, my son will ART test negative for something one month, but test very high for it the next. So most likely he had it in the first place, if that makes sense.) You could run blood work to check for mycoplasma as well as the EBV (Dr. S can order it). In terms of the lyme, if your daughter had lyme, she probably still does but just at a much milder level. Dr. Schwartz has compared my son's lyme to a "caged lion." In other words, the lion is caged but not gone. My son is on the Klinghardt lyme cocktail and will remain on it for 7 more months (for a total of 18 months) even though his lyme and co-infections (bartonella, babesia) are "caged." Lyme (or lots of other things) could be causing the joint pain. What does Dr. S think is causing the joint pain? Has he checked for mold illness?

 

My son was originally diagnosed with PANDAS by DR. T (very compassionate man) in October of 2010. He was diagnosed with lyme in November of 2011. So we started out down the PANDAS trail. Strep was certainly part of my son's problems, but not the worst. So basically my son has PANS. In other words, many infections/problems trigger severe, debilitating OCD in him. In terms of PANDAS, Dr. Schwartz is as well versed in it as Dr. T, so we no longer see Dr. T. But Dr. S does not have access to IVIG or plasmapheresis, so he can't prescribe that. In our case, we didn't think IVIG was a good option since my son has lyme, and we were denied plasmapheresis by CHOP (insurance probably wouldn't have covered it anyway). At this point it, it doesn't look like my son will need either. Mostly I think he just needs to continue the treatment path he is on and needs time to heal.

 

Dr. Schwartz was the fourth lyme doctor we saw. The first was very kind but had very little experience, so we moved on. The second and third both felt that my son simply had neurological problems and recommended Prozac (as did CHOP). My greatest respect for Dr. S was in his knowledge of the whole picture. I mentioned words like parasites, methylation, KPU, MMP-9, Shoemaker panel, Dr. Klinghardt, MTHFR, C4a/C3a, TGF-B1 and on and on and he was well versed in all of it. None of the other three lyme doctors we had seen were familiar with even some of these things. I knew we were in the right place when we found Dr. S. He understood the whole picture. My son wasn't going to be easy to treat. (Also, on the first visit he put his arm around my son and said, "Don't worry, Buddy. We're going to get you better." This meant so much to us as my son was very sick at the time.) We have been going to him for about 1 year and my son is at about 75% (many things are 100% better). He was at about 30% when we started with Dr. S.

 

I don't mind sharing the things my son is on, but I do want to caution that they are specific to my son and his problems. Even supplements need to be taken under a doctor's orders. Here's the long list of things he is currently on He has been on other things for H. pylori, EMV, CMV, yeast, and strep, but they are no longer needed.

 

1. Klinghardt lyme cocktail. Here's a link.

http://www.klinghardtacademy.com/images/stories/powerpoints/klinghardt%20lyme%20cocktail%202010.pdf

 

My son is on the following variation of this "cocktail" that was specifically tailored for him by ART:

 

5 days on/2 days off for 3 weeks, then 1 week off. Repeat for up to 18 months:

 

Artimisinin -- Biopure -- 5 scoops

Lipohealth -- 3 scoops (for detox.)

Buffered ascorbic acid -- 1000 mg. Pure Encapsulations -- 10 capsules

Add 1/2 c. water and blend for 4 min.

Galactose -- Biopure -- 5 t. (for detox.)

Bio-Curcumin Phytosome -- (I use NOW brand) -- 10 capsules

Deep-purple -- Biopure -- 5 scoops

Neem -- Biopure -- 5 capsules

Bee Propalis -- Beehive Botanicals -- 1 dropperful

IMD -- Mountain States Health Products -- 5 scoops (for detox.)

Quintessence -- Biopure -- 10 dropperfuls

PC Samento -- Biopure -- 10 dropperfuls

PC Noni -- Biopure -- 10 dropperfuls

Whole Macuna Bean -- Biopure -- 2 1/2 t.

Add 2 c. water, 2 1/2 c. grapefruit juice. Blend for just a few seconds.

Take 1/2 c. at breakfast and 1/2 c. at dinner

2.Other supplements:

Rechts Regulat -- garble every other day with 1 T. (for biofilms)

Enula -- Nutramedix -- 20 drops day (for microbial defense)

Pinella -- Nutramedix -- 8 drops/day (for brain-nerve cleanse)

K. Bart./K. Bab., K. Merc./K. Harmoney blend that Dr. Schwartz makes up -- Biopure -- 10 drops/day (for lyme/co-infections)

Core -- Biopure -- 4/day (for KPU)

Borage Oil -- Pure Encapsulation -- 2/day (Omega-6) (for KPU)

Basic B-complex -- Thorne -- 2/day

5-MTHF --1 mg. -- Thorne -- 1/day (for methylation)

B-12 shots -- 0.09 ml. methycobalamin every 3 days (for methylation)

Olive Leaf Extract -- 5-mg. -- NOW brand -- 2/day (for viruses)

Chlorella -- 20/day (for detox)

Magnesium -- 1 tablet/day (helps him sleep)

Acethyl Glutathione -- Allergy Research -- 1/day (this was just added at the last visit)

[Megan]

Christianmom,

Thanks so much for your detailed reply. My three kids are all on the lyme cocktail as well. And my son just started the acytyl glutathione and we are waiting for the B 12 injections to be ready. I know all of the things you mentioned except the TGF-B1....what is that?

 

How old is your son? Is he in school?

 

I am just so overwhelmed because my 8 year old son is having similar issues as my daughter....both home today. My son just did ivermectin through Dr. S over a week ago and it helped him temporarily but now he is back to square one. And his stomach is terrible now and his tourrettes is back. It is very difficult.

 

Thanks again for all of the info.

 

Best,

Megan

[dut]

Hi - just thought it worth a mention, that like junkyardjean, we have also experienced serum sickness. My dd got serum sickness in response to augmentin but your post mentioned getting very itchy on day 8 of keflex. That is the classic time-frame in which to develop a serum sickness like reaction.

 

Not to say this is what you were seeing in your child but I would maybe go google it, see if it fits. My dd was very ill with her reaction. Lots of itching, swelling and joint pain that at time stopped her walking. She was even hopsitalised at one point and missed 3 weeks of school. I wouldn't want her to go through that again. I think earlier reactions can be milder.

 

anyways just a though....

[junkyardjean]

Yes, the serum sickness was very bad - her joints were swollen (refused to walk, use her hands, etc), she was almost comatose in her lethargy, high fever, rash, the whole experience was awful. The docs have told us she most likely had milder versions leading up to the major reaction as she had been on amoxil before, but symptoms were masked by the illnesses she had at the time. Her reaction started on day 7 of taking amoxil.

 

Constitutional hydrotherapy consists of placing hot towels on her bare skin for about 10 minutes, then changing to ice cold towels (these stay on until the towels are warm). Each treatment consists of towels on her back, then on her front. The constitutional part is the use of mild electric current on specific organs (she had lots on her liver) during the treatments. The change in the temperature of the towels sounds brutal, but she only ever argued when she was in a flare up and we had lots of sensory issues going on. It is a very relaxing treatment (I would sometimes get one right beside her). The research shows that this treatment helps to produce new, healthy white blood cells (dd's dropped wayyyy low when she was sick - her bloodwork showed a dramatic increase in WBC after each treatment), and the extra stimulation to the organs helps to tone and regulate the existing "wacky" immune cells. It is a slower process, but thankfully we had great success with dd.

 

Her original strep was cleared with amoxil - but then she got the serum sickness. The hydrotherapy helped to clear all of her infections since last year, but we have also not encountered strep yet. Due to the rheumatic fever, I will be most comfortable using abx - but we are slowly running out of options that are safe for her...

Edited December 7, 2012 by junkyardjean

[JuliaFaith]

So sorry to hear about your daughter - you will see improvement with treatment.

 

My son also sees an ND (and MD) for lyme/PANDAS etc. and has only been on abx. here and there. The first thing we did was start on a detox protocol of salmon oil and chlorella (PM me if you want co. products). Son is still on it 2+ yrs. later. Also started GF diet to reduce inflammation which is big. These are things you could start now before dr. appt.

 

Also, sore throat makes me think of MaRCONS which are an anti-biotic resistant staph (I believe it is also from the strep family?). This is usually discovered thru a nasal swab (painful!). My son's was discovered after a nasal swab while asleep for T&A (thank goodness). But more recently (year later), with nausea/stomach and ear/sinus pain, and cont. PANDAS symptoms, his MD said that she thinks it is back. So, she ordered BEG nasal spray (prescription) to treat. Just arrived!

 

Just some thoughts. You sound like your on the right path which is half the battle. Wish you the best on treatment.

 

P.S. Milk Thistle may be easier to give a 6 yr. old instead of chlorella and salmon oil can be purchased in liquid form.

Edited December 7, 2012 by JuliaFaith

[smartyjones]

megan -- i'm curious -- your ART doc tests your child as negative for mycoplasma but your other doc tests him as positive? what does he suggest for treatment?

 

we see an integrative MD who treats with homeopathy. with onset, ds had 100% remission of symptoms in about 3 days with keflex. but. . . he relapsed after about 30 days off abx(after a 30 day course) and did not see the same result when back on. we used a strep nosode for about 18 mths. whenever we tried to wean him off, he ramped up. we recently (6-9 mths ago) tested titers and he was very low - has been off the nosode for a long time. he was around 900 with onset and was high for some time after. so i do believe it was a very effective treatment against the strep. we have also treated with homeopathy for mycoplasma and EBV but we are not checking titers for those.

 

 

you say they do not see anything in the throat -- could the infection be in the sinuses? with onset, a CT showed all 6 of ds's sinus cavities infected -- no real symptoms but PANDAS. headache, vision and sore throat can all be sinus. the sore throat and gastro trouble can be from sinus drip as well.

[Megan]

Thanks for all of your replies. Now my son is acting terribly and saying violent things - he didn't go to school today either. He must have strep again, along with parasites. It is crazy in our house. Very depressing. Both my kids have stomachaches and I don't think can tolerate the abx.

 

SmartyJones - we have tried some homeopathy through one of our doctors but didn't have much success. I do want to look into it again though. I'm curious, where is your intergrative MD located? Can you give me more info about the nosode that you had such good results with? Did it bring down a big infection or did you have to knock it down with abx first?

 

Yes, the two testing results don't always totally match but most often do. I can get more info by going to both though. My practitioner who does EDS testing says that most myco is resistant to abx, but she uses a form of rife therapy which is remedies imprinted with frequencies. I have a rife machine myself as well.

 

JuliaFaith - thanks for the info about the marcons....will have that checked. Where is your ND who treats PANDAS?

 

junkyardjean - They hydrotherapy sounds great. I couldn't find a practitioner near me but will keep looking.

 

Thanks again for all of your help during this very difficult time.

 

Megan

Edited December 8, 2012 by Megan

[JuliaFaith]

 

JuliaFaith - thanks for the info about the marcons....will have that checked. Where is your ND who treats PANDAS?

 

Our ND and MD that treat PANDAS are in the Seattle area. We feel very lucky to have them!

 

Cistus tea (rock rose) is a good biofilm buster. Can re-brew it 4 times (BioPure). We are also using Motrin 3xday which seems to be helping with some symptoms right now (post flair 4 mos. ago). TGF-beta 1 gives you an inflammation number. Normal is less than 2000. My son's last test was 4500.

 

Our parasite/worm protocol started with- Biltricide (first 2 days); then ivermection & Pyrantel pamoate (2 weeks); Albenza (2 weeks); then lastly, Alinia (2 weeks); one right after the other.

[Christianmom]

Christianmom,

Thanks so much for your detailed reply. My three kids are all on the lyme cocktail as well. And my son just started the acytyl glutathione and we are waiting for the B 12 injections to be ready. I know all of the things you mentioned except the TGF-B1....what is that?

 

How old is your son? Is he in school?

Hi Megan,

 

So sorry that things aren't going well for you.

 

I am not sure exactly what the TGF-B1 is, but from my understanding it is a marker of chronic illness of some kind. Dr. T told me it usually showed chronic lyme, chronic mold, or chronic strep (usually chronic lyme). Dr. Schwartz said he had never seen an elevated TGF-B1 in a patient that didn't have lyme. But I suppose it is a marker for just about any chronic infection. It was the biggest clue that started us down the lyme trail (that, and my son testing positive for KPU). I asked Dr. T to order it as part of the Shoemaker mold panel.

 

My son is 17 and we homeschool. He is doing a regular school day now (was doing almost no school a year ago), but because of his remaining OCD, he needs me to sit with him with any of his high concentration subjects--math and computers. He also struggles with reading alone.