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I need some hand holding…again. This is a long one if you can take reading all of it.

Any thoughts, even if not popular, are welcome. We are all on a journey.

 

Let’s start with easy/good stuff.

 

DS4…still in remission?….still has tag and sock issues…but that has been as long as I can remember.

He was 75%tile in height until 1 ½, when he brought home myco p from day care and that is the exact time ds12 started this 3 year journey.(ds12 typical panda till that time…tics/abx/remission about 12 times)

Ds4 was on abx and steroids at that time for a couple months, that was 3 years ago.

We are working on his height since he had dropped below the 25th %; nystatin gave him a good growth spurt and armor for low t3.

We are reevaluating another round of nystatin.

 

Ds 9 was exposed to strep, the mom let me know as a heads up, thankfully. 3 days later ds9 says “mom my tics are back”….started on zith and tics gone in a couple days…ran a full 2 week course of zith.

His tic either looks like a guy is going to blow a trumpet, or like a kissy face.

2 weeks post stopping zith tics came back. We started amox and again tics gone in a week, ran the full course as usual. 2 weeks after stopping, tics have now returned. Restarted amox a couple days ago…tics are almost gone again and we will run it for a full month this time. So, on the bright side he is in remission while on abx?

 

Here we Go…..DS12 (b-day Feb 2012).

As mentioned we have dealt with pandas since age 3.

I was fortune until 9, to get complete remission.

DS has horrible allergies and we started shots 9/2010 with dr b in ct, at a super low dose. We hope to be on maintence in about a month.

DS prior streps would all be during the school yr, exempt one summer episode.

But his allergy symptoms were debilitating by the end of Feb. every year of his life. I think he would always get another infection in March because of the constant head congestion just letting things fester.

 

Though I was aware of my ds strep/tic correlation by the time he was 3, I didn’t find pandas until he was 5. Prior to 5 I investigated allergies. I had heard, and I had seen DR Rapp on a TV show…don’t remember which one. I knew that my ds could fit into this correlation between allergies and his tics.

Dr Bradstreet has a blog and he shows how Rapp correlates “allergens” very similarly the way that strep reacts in certain kids (pandas like)

Here is the link

http://drbradstreet.org/2012/03/06/expanding-our-understanding-of-pandas-and-introducing-pans-microbe-influenced-immune-behavior-dysfunction/

 

Besides the weekly allergy shots..ds is on singulair 5mg.

He is 100lbs

According to ds, his tics are going up about a ½ every 2-3 days.

Pollen count for Atlanta area is as follows, todays 2979

F27th 25 F28th 4 F29th 9 M1st 67 M2 102 M3 64

M4 33 M5 104 M6 40 M7 54 M8 67 M9 115 M10 51

M11 79 M12 142 M13 98 M14 209 M15 552 M16th 2979

 

 

 

I gave him allermax today.

Should I up the sing to 10mg

I can’t keep him in a bubble…or can i.

 

 

To correct myself his 1st molar is NOT all the way in…another 33-25% to go

2nd molar 20% out.

One of my Dans says this is definitely an open source of infection.

 

Here is his current list of meds..

Dan just added AMox and flucozle for one week , as of yesterday, to address mouth bacteria.

 

Azith 250 mg

Doxy 200mg

Levox 25 mcg

Tagament 800mg (secondary use, anti-inflammatory/allergies?)

Singulair 5mg

 

Rotating every other week

 

Bactrim ss tab bid

Flagly 250 mg

 

Really concerned about ds gut. Though no known issues as of yet.

I give a 5 bill pearl in a.m. with abxs

And then a pearl and another 50-70 bill of probis at bedtime.

 

Yes at one point band 39 ind

Many months later, just trying to rule out lymes, 2 out of 3 dot blots positive

Months later he got an 80 on IFA B burgdorferi …… =or > 80 positive…so I guess he is/was pos

Cd57 was 16 last year when he was 11

 

Myco p iggs always in pos range…igm in normal range

 

We started azith 8 weeks ago…he was just on doxy and flag every other week

Then added Bactrim the week before last….this is his 2nd bactrim week.

 

 

What am I not thinking of????????????????????????????

Tagament gave him a nice softening and when we doubled it was even better.

We had a nice improvement just on doxy after about 14 weeks…once last summer that lasted about a month(90-95% or better) before he got a salavery glad infection (from fixing a cavity)….and another few weeks in January before molars started(same thing 90%ish).

 

Any thoughts on it being herxing?

Any thoughts on controlling allergies?...I mean really what else can I do.

Thoughts on the molars?

I’ve been trying to maintain BBB with turmeric and garlic.

 

He had pex late summer after back to back salivary infections (don’t know if a week or 2 post abx was enough time to do pex) pex made things worse.

Started doxy about 10 weeks post pex, at the beginning of October 2011.

Did not get better till 12-14 weeks of doxy…if pex helped I can’t necessarily correlate it.

 

If I am treating lymes/myco p, I am expecting too much at 5 months into it.

We did solely doxy till late Nov/ December when we added flagyl every other week.

End of Dec added Tag

Beginning of Jan added zith

Feb upped tag

1st week of March added Bactrim every other week

His eyes are mostly always dilated.

 

Cigna covers pex for pandas, not ivig.

Should I do at least 1 ivig?

He is 12, and thinking I might have to pay out of pocket.

I hear ivig is only temporary fix until next exposure?

Does ivig help with allergies?

I mean if it helps that, allergies are a huge part of ds problems.

 

I’m running out of fight. I am tired of being sad and worried. I want to be done.

 

Ds tics were 6 yesterday and his tics are a 6 ½ today.(they might even be worse then that)

It pains me so much to see him this way. His tics are like full body convulsions. Kinda start at his hips and roll out to a full head whip, gapeing his jaw.

I see people stare at him when we go out. And they wonder what i wrong with him.

He is so normal to me and the tics are only something interrupt the moments of him being NORMAL.

Of course there is physical pain as well.

 

Thanks for reading this.

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You are an amazing mom if you have 3 children going thru this all at once! It has been difficult for me just to have one (and now DH).

 

Are you thinking that a lyme doctor may be something to look at? Our ND also treats autism along with lyme, co-infection, mold illness, etc. When I was looking at our last choice for PANDAS as IVIG, I decided it could not hurt financially to see a good lyme doctor before doing an IVIG (since I figured insurance would not pay for it). Some people have benefitted from IVIG/PEX but looking at lyme before going this route first was one of the best decisions that I made (ds had minimal psycho symptoms).

 

When I read your part about allergies, I wondered if 'mold' might be an issue (especially with so many ill in your family). Since we cleaned and removed mold from our house, I no longer need allergy or asthma meds. www.survivingmold.com is a good website for this.

 

Also, I wondered if you were taking any supplements to detox, probiotics, and support damage to organs etc.

 

After 16 months of allopathic/natureopathic/homeopathic treatment, my son is still being treated for Myco. along with viruses that have not been de-activated, and also still detoxing like crazy!

Edited by JuliaFaith
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{{HUGS}}!

 

Did I already tell you about LZR7 allergy treatment that we are doing with our wellness doctor? I'm not ready to 100% start recommending it but after this spring I will be I imagine.

 

I always call us the "allergy family" and we were doing allergy shots too for dd10 and I. She and I would be on multiple meds for allergies (we can't take singular due to the side effects but used zyrtec, benadryl, allegra, flonase, etc.). We did the LZR7 treatment (you can google it and find lots of info on it) and we are off all allergy meds (except sometimes the eye drops for itchy eyes). We are having some horrible days now and then but then it seems to clear up. Normally I would not be able to function with the start of spring and trees blooming without lots of meds.

 

My heart goes out to your son and you too of course! I wish I could help more somehow.

 

Susan

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I can totally understand how lost you are feeling right now given all you and your children are going through. So many things at play. So many directions you could take.

 

I've seen a few people mention the Singulair...that drug is one that I think can be a life saver for some in terms of their asthma/allergies but wreak havoc for others from a neuro/psych perspective. The list of side effects often mirrors PANDAS symptoms (i.e. I know aggression/rages/depression are some of the possible side effects and someone above mentioned tics). We stopped it in January as an experiment to see whether that what was causing my son's emotional lability. The jury is out as to whether it made a difference. Now that spring is upon us, I may have to put him back on it. That might help us decide.

 

Anyway, I guess I'd echo the recommendation to consider removing the Singulair...but only under the guidance of a doctor and close monitoring of the symptoms Singulair is supposed to relieve.

 

Are you seeing an LLMD? What does s/he think?

 

I think someone else also asked if it could be herx. When we added Bactrim to our Zithromax mix, that's when we started seeing both herxes and subsequent improvement. You just added it a week or two ago, right? So I think this could be a possibility as well.

 

What are you doing for detox?

 

Lyme is a long haul for sure, with many spikes along the way.

 

Kara

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Just a few thoughts based on what I see in my practice. This is what I have learned and have experience with so far.

 

Start and stop of abx will only result in driving the chronic infections deeper. This goes for herbal antimicrobials too. One needs to find the abx combo that works and stay on it.

 

band 39 positive etc- Lyme is positive. Most kids also have coinfections. Bartonella is a common coinfection and its very immune suppressive and needs to addressed aggressively if any treatment is going to be effective.

 

Any chronic infection changes the internal environment in the body- bacterials toxins, allergies are environmental toxins. Your DAN must've given you info on this. There should be no hesitation in treating the Leaky Gut.If the brain is affected, one needs to start with the gut. 70% of immune system lives in the gut. The neurotransmitters are manufactured in the gut. detox happens in the gut etc etc

 

Detox and drainage, organ and nutrition support.

 

Neurons communicate electronically, electricity plus biochemical processes create electro magnetic fields that are protective of the cells. EMFs play a huge role in motor tics in children in my practice and once those are addressed it helps calm down the motor tics by upto 25% or more in most kids.EMFs disrupt the neuronal processes.

 

I see a lot of conventional meds on your list- all great meds and very effective. I see a lot of autoimmunity with allergies and PANDAS. Autoimmunity is late stage of late stage chronic degenerative infection. The body needs a ton of additional support. I don't see adequate support. Maybe you didn't get a chance to post your entire protocol.

 

IVIG is a mixed bag and much debated. Ultimately a personal decision.

 

Mold and insulin resistance in the brain needs to be ruled out.

 

Bradstreet is a colleague and brilliant.

 

All in all a good integrative med doc who understand Lyme, PANDAS and integrative would be my suggestion. ALL symptoms that you mention are fixable in children so young. I currently have tens of cases with similar stories all doing very well indeed. Childrens bodies will heal well if given the right tools.

 

Nanocurcumanoids from Life Enhancement is the most potent Curcumin on the market I 've seen. Garlic has limited use in protecting the BBB. Curcumin helps with intracellular mitochondrial dysfunction and energy metabolism of the cells in the brain. It can help the neurons communicate better, reduce insulin resistance and help in that way.

 

EFAs are a big help too. But assuming using Garlic and Curcumin protect the BBB is a bit presumptuous in my opinion.

 

As you can see there are a lot of unexplored areas in your protocols and there is a lot of room to tweak. Please don't lose hope. There is so much you can do. Cost factor is always huge for most of us unfortunately.

 

I have mentioned in more detail in another post but my DS 10 with Aspergers, Lyme, bartonella, Babesia M, Babesia D,, Mycoplasma p., PANDAS, Immune deficiency,HHV6, RMSF, autoimmune osteomyelitis, severe full body shakes motor tics, vocal tics, allergies, - is now at 98 to 100% after two years of aggressive treatment under my care and guided by my mentors. I have all of the above infections and a few more and am doing well as is DH.

 

It can be done.You sound like a strong and amazing mom who is looking hard for answers.You will find them by God's grace. The mothers on this forum are absolute mother warriors and you will find fantastic knowledge and support like I have. Wishing you the best.

Edited by sptcmom
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I do think 5 months isn't long in terms of lyme treatment, especially since you've only been doing a combo abx approach since Dec/Jan. It's a long haul 18-24 months?

 

I agree with Julia - mold came to mind, esp. with the allergies being such a big factor. At the suggestion of another member, I took apart my washing machine and found mold all over the plastic drum of my washing machine. Mold can be anywhere and can really contribute to inflammation and histamine issues. Survingmold.com has a great list of labs to run. Definitely helped me zero in on a few things that weren't "the" source of our problems but certainly contributed.

 

The other thing that jumped out was the topic of methylation. Since you've been away for awhile, you might've missed the big exploration this past winter on the Pandas forum. Think of methylation like metabolism. It's about how well or inefficient your body is at performing many essential chemical reactions. Under-methylation is a big factor in allergies. You might want to look up MommaKath - she's working with a DAN in your are who's helped her DS immensely. - Could also be important for your 4 yo

 

Agree with Kara to be wary of Singulair. It has caused issues for others. It also has side effects for the general population. A natural supplement you can look into is quercetin. The down side is the pills are bigger and only last about 4 hrs but no side effects.

 

The final thing to consider is deficiencies in vitamin/mineral/essential amino acids. Fxcfer and I have both seen dramatic improvements by going down this path. My DS has a genetic deficiency called pyroluria. Supplementing with a product that contains zinc/B6 made a huge difference for him. You might also find magnesium helps alot for tics and brain fog. Garlic is helping my kids with gut issues.

 

I think there are many ideas you'll have to look into - and each may help move things forward. For us, some things helped in a big way, some helped in small ways. But it was a combo of approaches that worked best. I'd spend some time searching old posts on the lyme forum: KPU, detox, mold, methylation. Also read back issues of www.betterhealthguy.com - he explores a lot of these issues.

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Thanks for all the replies.

 

Thanks for saying Im a good mom. I know it sounds silly but those kind words do reach across the internet. I am not fishing for a compliment right now, but in truth, I feel like a failure. I hear of others getting their kids to recovery and I am still trying to find my kids locker combination. And now I feel like a complete moron after reading about singulair. I did look up the side effects and neuropathy didnt come up. I keep an eye out for depression and rages. One of my DANS was the first to suggest singulair, followed by my immunos advise, both of my neuros know about it. Can someone please come here and kick me!!!!! If it is from the singulair, will it resolve……being hes 12???? I do believe there can be side effects not listed. My thyroid gets affected by drugs that say they do not affect thyroid.

Ds has been on singulair for more than a year as his allergies are so bad, and we had tried everything. I do think the allergy shots have helped, since he would be almost non-functional by now.

I was only giving him ½ a pill for a while, but since allergy season is here I was giving him the whole thing, 5 mg.

Do I have to wean him off…1/2 pill for a week or so…I WANT to stop singulair today.

 

I will up the allermax and add more quercitin…as I think the allergy shots have us in an ok place.

 

 

We need to check his liver enzymes soon and will be checking the MTHFR gene.

 

He is on a multi…I used to do separately…but after seeing lyme dr in md…he suggested 1 multi vitamin so he can cut down from 30 pills or more a day to 25ish????

I wonder since its one multi if I should supplement with more b6 b5 b1 again…..

 

I have ds taking idebedone/ubiquinol, and D3.

 

After reading the great article someone posted about GABA, I thought we should give it a try. I found this product and thought it had a good combo of things and the Bs that ds would normally take.

http://www.iherb.com/Rainbow-Light-Busy-Brain-Release-60-Mini-Tabs/29974?at=0

my dan thought it looked pretty good

I tried it first, Wednesdayish. It is nice.

So I started ds on it Thursday….I dont think this has anything to do with anything…as his tics have been increasing like I said and I started to write my post prior to ds coming home.

 

When I can fit it in during the school week (ds is gone from 8 am to 5pm with just school, no activities) I give burbur, or thistle (I know it is a ragweed, but wonder if it helps like a sublingual would, cant say things are worse when I do give)

On the weekends I try to get either activated charcoal, bentonite clay or a drawing formula in for detox. After a big argument I can get him into a mag/baking soda/apple cider (for the last 10 minutes) bath once a week.

 

I just looked my washer and the soap dispenser does need to be cleaned which I thought of before Christmas but never did. And in our bathroom I see a weird line of mildew way up high, in a small vaulted area.

 

Thanks for letting me know that Im probably a juvenile on the lymes path, and need patience.

 

But now I am so worried about the singulair. Does anyone know if I am seeing something from it, if, when it clears out of his system?????

I guess I will never know if singulair was ever a culprit, as he has so many other triggers going on.

 

Found this on singulair…read the last of the set of 3 under this heading…it sounds like DS. One of his tics is always head involved.

Would you recommend a doctor for tic disorder?

Oct 2010

http://parents.berkeley.edu/advice/worries/tic.html

 

Does anyone have personal experience with singulair and tics and the tics getting better once stopping singulair?

 

If it is neuropathic, what can be done about that? Anyone have thoughts?

Sptcmom, do you have anything or suggestions that would help with neuropathy?

Also thanks for the confirmation on Bradstreet. I went to FL to his office years ago. Now that he is very close to me in GA, I have an appointment for the end of next month.

 

Regarding DS4….someone mentioned lack of growth due to lymes? I guess that could be. I was contributing lack of growth to the steroids he was on that then affected him somehow and maybe gave him yeast.

Now DH has had so many tic bites as kid he cant remember. I wonder if he passed it to me and I gave it to the kids. DH has not been checked for lymes. He does tic, but since long term abx, and tonsils out last year, he has been strep free for over a year!!!!! He cant remember not having strep at least 3-4 times a year, all his life. On a side note…dh went to doc last week for bronchial infection…dr said dont take abx script Im giving you,,,only if you feel you really need to fill it…but here is cortisol shot???? I wasnt there when it happened…on good note…he is almost tic free, if any…..!!!!!!!

I dont have high hopes and expecting a rebound.(dh are tics fairly mild)

 

Sorry if I ramble…once my mind settles down on one kid, it jumps to what I need to do for the next.

I love this board and all of our healthy discussions!!!

Edited by Fixit
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Fixit - you need to take the washing machine apart to look for mold. If it's a top loader, go to youtube and search for a video to see how to take apart your brand. Usually, there are 2 screws that attach the outer body cover to the electrical panel and knobs. Take off the body cover and you'll see the metal drum set inside a larger plastic drum. The mold on my machine was covering the plastic drum.

 

If you have a front loader, the mold problem is generally at the seal of the door. I understand it's harder to access for a good cleaning but you can use a cleaner specifically made to clean the drum and fight mold.

 

Jodie - re: pulsing of abx - my LLMD has been using pulsing with great success. 3 weeks on/3 off. He says the initial 2 cycles are rough, but patients see big results after a few go-rounds.

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Fixit - you need to take the washing machine apart to look for mold. If it's a top loader, go to youtube and search for a video to see how to take apart your brand. Usually, there are 2 screws that attach the outer body cover to the electrical panel and knobs. Take off the body cover and you'll see the metal drum set inside a larger plastic drum. The mold on my machine was covering the plastic drum.

 

If you have a front loader, the mold problem is generally at the seal of the door. I understand it's harder to access for a good cleaning but you can use a cleaner specifically made to clean the drum and fight mold.

 

Jodie - re: pulsing of abx - my LLMD has been using pulsing with great success. 3 weeks on/3 off. He says the initial 2 cycles are rough, but patients see big results after a few go-rounds.

 

 

Ok thanks. I did not know. It is a front loader i bought last year that has special allergy cycles. I just took apart the soap area. I did not know to look in the other areas. I usually leave the door open between loads.

I will look for the special detergent....

what if i ran a couple empty loads with bleach????

 

Thanks for all your great info.

Looking to do blood work next week and will look into some of the other things you mentioned

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Fixit - you need to take the washing machine apart to look for mold. If it's a top loader, go to youtube and search for a video to see how to take apart your brand. Usually, there are 2 screws that attach the outer body cover to the electrical panel and knobs. Take off the body cover and you'll see the metal drum set inside a larger plastic drum. The mold on my machine was covering the plastic drum.

 

If you have a front loader, the mold problem is generally at the seal of the door. I understand it's harder to access for a good cleaning but you can use a cleaner specifically made to clean the drum and fight mold.

 

Jodie - re: pulsing of abx - my LLMD has been using pulsing with great success. 3 weeks on/3 off. He says the initial 2 cycles are rough, but patients see big results after a few go-rounds.

 

Can you tell me what you mean by great results with pediatric pulsing? I have heard that from another mom on the west coast but there the LLMD used it as part of regular pediatric lyme abx schedule.

Both of my mentors- conventional LLMD and Holistic LLMD are strongly against pediatric pulsing of herbal and allopathic abx for the same reasons even before they actually met each other. I particularly explored this option since I wanted to try it with DS at a low time and I was training with the Holistic doc.

I would like to have that explanation in my arsenal. You never know which child might respond. :)

Adult pulsing is well documented in the Lyme circles and I've used it very successfully. The 3 weeks on and 3 off etc is very similar to Burrascano's self protocol and its been used with variations ever since but only with adults that I know of.

Edited by sptcmom
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Not sure I understand the thinking that pulsing will drive the infection deeper in pediatrics but not adults. DS had already been on single abx for Pandas for 2+ yrs, unsuccessful IVIG. Not sure how anything could drive things much deeper after all that. He's been on combo abx, incl. 5 wkends of tindamax, over the past 18 months. I'm feeling like we've gotten most of it but want to try pulsing just to make sure. LLMD started using pulsing last summer after adopting a number of patients from another LLMD who closed his practice and they were all on pulsing, so he continued and has been impressed with the effectiveness. He didn't specify if it was adults only but we have spoken about it terms of my 9 yo. using combo abx for 3 wks, then off of all abx for 3 weeks...

 

I have heard that from another mom on the west coast but there the LLMD used it as part of regular pediatric lyme abx schedule.

 

Confused by this. How can it be a regular abx schedule but also pulsing? I don't think I'm following you.

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Not sure I understand the thinking that pulsing will drive the infection deeper in pediatrics but not adults. DS had already been on single abx for Pandas for 2+ yrs, unsuccessful IVIG. Not sure how anything could drive things much deeper after all that. He's been on combo abx, incl. 5 wkends of tindamax, over the past 18 months. I'm feeling like we've gotten most of it but want to try pulsing just to make sure. LLMD started using pulsing last summer after adopting a number of patients from another LLMD who closed his practice and they were all on pulsing, so he continued and has been impressed with the effectiveness. He didn't specify if it was adults only but we have spoken about it terms of my 9 yo. using combo abx for 3 wks, then off of all abx for 3 weeks...

 

I have heard that from another mom on the west coast but there the LLMD used it as part of regular pediatric lyme abx schedule.

 

Confused by this. How can it be a regular abx schedule but also pulsing? I don't think I'm following you.

 

I mean the LLMD uses it for all children and adults as his routine protocol not just for the severe ones like some do.

Very different physiology and toxicity levels in adults and children. In adults its already in deeper in today's world plus if not, adult cell membranes can tolerate repeated permeability adjustments much better than pediatric tissues can. Adult detox pathways can also handle changing influx of chemicals better than compromised pediatric detox channels can. In gestational lyme the mom might be holding on pretty well but the affected child has to deal with her downloaded toxins and their own acquired ones. Its very different dealing with a child's patho physiology in chronic degenerative disease.

 

Adults have much higher levels of epigenetic and environmental exposure, years of toxins, bad food choices, stress, life style issues, misdiagnosis etc- long list. Most I see have been travelling the MS and CFS route for years and finally stumble upon lyme. In children its preventable if caught early enough and treated from all angles. What I've learned is pulsing teaches the microbes to change forms faster and burrow in deeper to resist. The surface proteins change faster and there is a higher risk of increasing already existing autoimmunity or inducing autoimmunity thru molecular mimicry of these changing surface proteins. One of the emerging theories of IVIG resistance in some kids. IVIG shuts down the adaptive immunity naturally since the body senses an influx of donor antibodies. The innate system will never accept donors as self easily. The adaptive is shut down. The microbes panic at the new arsenal and defend themselves by rapidly changing form and/or surface proteins causing a major stirring up of stuff, increase in molecular mimicry scenarios for several weeks. This is for lyme and PANDAS kids or Lyme only that are getting IVIG to build up their immune systems they have been told by their docs. Many I see are doing very poorly after IVIGs every 8 weeks.

Herbally and allopathically treating as many coinfections together as possible is the key and ofcourse as you already know, in the right order of elimination. Steady dosing creates a sustained blood level of the desired herbs/abx and is gentler on pediatric tissues.

Again, my experience and learning.

This has been my learning and experience so far. Always happy to learn more.

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Not sure I understand the thinking that pulsing will drive the infection deeper in pediatrics but not adults. DS had already been on single abx for Pandas for 2+ yrs, unsuccessful IVIG. Not sure how anything could drive things much deeper after all that. He's been on combo abx, incl. 5 wkends of tindamax, over the past 18 months. I'm feeling like we've gotten most of it but want to try pulsing just to make sure. LLMD started using pulsing last summer after adopting a number of patients from another LLMD who closed his practice and they were all on pulsing, so he continued and has been impressed with the effectiveness. He didn't specify if it was adults only but we have spoken about it terms of my 9 yo. using combo abx for 3 wks, then off of all abx for 3 weeks...

 

I have heard that from another mom on the west coast but there the LLMD used it as part of regular pediatric lyme abx schedule.

 

Confused by this. How can it be a regular abx schedule but also pulsing? I don't think I'm following you.

 

I mean the LLMD uses it for all children and adults as his routine protocol not just for the severe ones like some do.

Very different physiology and toxicity levels in adults and children. In adults its already in deeper in today's world plus if not, adult cell membranes can tolerate repeated permeability adjustments much better than pediatric tissues can. Adult detox pathways can also handle changing influx of chemicals better than compromised pediatric detox channels can. In gestational lyme the mom might be holding on pretty well but the affected child has to deal with her downloaded toxins and their own acquired ones. Its very different dealing with a child's patho physiology in chronic degenerative disease.

 

Adults have much higher levels of epigenetic and environmental exposure, years of toxins, bad food choices, stress, life style issues, misdiagnosis etc- long list. Most I see have been travelling the MS and CFS route for years and finally stumble upon lyme. In children its preventable if caught early enough and treated from all angles. What I've learned is pulsing teaches the microbes to change forms faster and burrow in deeper to resist. The surface proteins change faster and there is a higher risk of increasing already existing autoimmunity or inducing autoimmunity thru molecular mimicry of these changing surface proteins. One of the emerging theories of IVIG resistance in somIce kids. IVIG shuts down the adaptive immunity naturally since the body senses an influx of donor antibodies. The innate system will never accept donors as self easily. The adaptive is shut down. The microbes panic at the new arsenal and defend themselves by rapidly changing form and/or surface proteins causing a major stirring up of stuff, increase in molecular mimicry scenarios for several weeks. This is for lyme and PANDAS kids or Lyme only that are getting IVIG to build up their immune systems they have been told by their docs. Many I see are doing very poorly after IVIGs every 8 weeks.

Herbally and allopathically treating as many coinfections together as possible is the key and ofcourse as you already know, in the right order of elimination. Steady dosing creates a sustained blood level of the desired herbs/abx and is gentler on pediatric tissues.

Again, my experience and learning.

This has been my learning and experience so far. Always happy to learn more.

 

How do you know the right order of elimination?

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All I can tell you is what our dr. recommended. It really depends on what you have going on at the time, because, for instance, the gut is a huge part of beginning to heal so if that area is not in too good of shape that would be one of the starting points (along with other things). It does seem like this office likes to start with reducing parasite/worm load.

 

Month #1, this is what ds started on before any tests had been done yet:

 

Treating GI Inflammation (still working on this with probiotics)

Lung healing (mico.-still doing treatment 16 mos. later)

Bio-film treatment (rock rose tea -lyme)

Nutrient support

 

Month #2 (test results back):

 

Start Thyroid meds.

Added in more lung support

Detox

Antimicrobial treatments (anti-fungal/Anti-viral)

Parasite/worm protocol (Biltricide/Ivermectin/Pyrantl/Albenza/Alinia [this one covered lyme and others things too])

 

Month #3:

Continuing with prior month meds/supplements

Added: Vit. A

Kidney support

New anti-microbials

toxin binding - clay

 

This is just the beginning of our 'lyme' journey. Now after 16 months of treatment dr. says 'big bugs' are taken care of now we are concentrating on small ones (viruses). Hope this helps.

Edited by JuliaFaith
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