Lyme follow up, moms results, herbal questions

[Tnmom]

Hey- I tried to add a bit in my signature line but I am sure I am missing something.

 

1. Lyme follow up- saw a LLMD in NY area- he was not very open to mold (forgot to put mold exposure in signature line ) or herbals and Im not sure how much he is considering bartonella.….he thought mold was not as much an issue unless Lyme was causing one to become super sensitive to it….whatever- I know I will keep it in MY differential as far as causing neurotoxins….and plan on addressing it in the future if Lyme treatment isn't complete…. herbals- he said he doesn't do herbals but is fine with me doing them. So my husband (we are both MD's) I don't even like saying that because despite having that title after my name I feel like I have been enrolled in the most intense medical class and have learned MORE from people on this forum than most ALL the M.D.'s I have talked with. I also don't want to be held accountable for medical advice…..I really don't have that much to offer anyways!! My only benefit I suppose is that other physicians have to give me some attn and not say Im insane (at least not too my face)??!!! But I digress- my point is my husband is a doctor too and this makes decisions quite sticky. I am open to herbals, I feel that mold is a factor, I am learning a TON about methylation and he is on board really only now with that Lyme is a real diagnosis (that took over a year but he IS on board and for that I am grateful). He likes this doc in NY- Im underwhelmed. He put my DD- on just doxy…..didnt mention biofilms or cysts. she is very sensitive to abx so maybe he will do more and just wanted to see how she would tolerate this to be safe so maybe I need to be patient…? tell me this is a marathon and not to be frustrated? I have added serropeptase (I feel I am misspelling that) and am considering adding grapefruit seed for a cyst buster for kicks…maybe…..I need to make sure she is detoxing well first. She is miraculously doing ok on doxy- should that concern me she is not herxing more- mild MILD at most… but I think her supplements are helping? and again doxy is metabolized mainly through the gut not kidney/liver….I just keep thinking - are these things all hanging out in cyst form now?? agh...

 

-thoughts on doxy solo

- what do you do for detox- I have looked into burbur and pinella- does that really help? I would love for it to help her short term memory issues…. we do lemon water, vit. c and many toxic mopping supplements, probiotics, digestive enzymes…..I guess I wonder about liver and kidney detox specifically.

 

2. I am concerned about how she got this- maybe from our 16 acre farm running in the tall tall grass barefoot….OH MY WORD what were we thinking???? or from me???? so I have been really fatigued for a long time- thought it was concern about DD's issues or/ and having 3 kids back to back. Had a miscarriage 2 years ago in second trimester and recently with darn muscle aches and joint pains- what??!! tinging in feet, lightheaded, a need to lie down….agh but it all comes and goes and is worse when I slip up and eat gluten and around my period…..so I got the lyme test and I think my sweet and really supportive despite his hesitancy on LYME is going to croak

Here are my results and tell me what you think???

I have 2 other boys and see things now that makes me wonder for them- 6 year old- more tired, groin pains and occ stomachaches but other wise does BRILLIANTLY in school. 4 year old- some irritability but NOTHING like the daughter and processing well. thoughts?

My test: (I did not do confections to save money…will reconsider) IGENEX

IFA- neg

IgM-Igenex and CDC neg 18 + 23-25- IND 39 IND 41+++ 83-93+

IgG- Igenex and CDC neg 41++ 45+

 

-Thoughts on it?

- would it be worth repeating after abx if you EVEN thought it was suspicious??

- I will not hold anyone accountable but I do value GREATLY your input.

 

3. I want to add herbals to DD and possibly(likely) start myself- looking into Buhner- reallllly like what he has to offer but he says to do tinctures for kids….DD has corn/wheat allergy….rowing mom I think (if you want to give input PLEASE DO!!!) you made teas out of the powder on some? I am a retard so can you tell me HOW you did that? Like boil water, steep for x amount of time….did you add it to a chamomile tea or did the kids or you just chug it down?? I think the main reason I haven't done herbals is because its taken a ton of time to wrap my head around it AND the method of intake,……I may consult an herbalist but would love your input….really wish the LLMD we saw would just DO the decisions for me (I lie) ….I guess to have dialogue about what to do would be great (I think I will always have my hand in this somehow….

- herbals- method of taking for kids…..

- which herbals are best for Lyme- would you do ALL the suggested or just knotweed and cats claw?? Or add according to her main symptoms- neurocognitive……would you add bartonella to the mix or do Lyme first/bartonella second…if I mix it seems like a ton of herbs??? again I prob should get a consult….

 

ok thats it for now- I am indebted to this forum and moms that never give up.

 

Tnmom

[LNN]

On mold - I don't think it should be discounted. But you are just getting your feet wet. Give it time and see how she responds, see how your relationship with this doc evolves. If 3-6 months from now you don't think you're making progress, then you can ask your LLMD to run some of the Shoemaker tests for kids (google "shoemaker mold test children" and you should find an FAQ on his survivingmold.com site where he lists the tests he runs on kids

 

On not mentioning biofilms or only starting her on doxy and not a combo - I think the majority of patients LLMDs see go in failrly new to Lyme and are easily overwhelmed - especially parents who've been watching their kids suffer and have been thru many docs without getting answers. So I don't think it's uncommon for a doctor to not discuss the whole enchilada in the first visit. There are just too many unknowns when you start out. Maybe a patient will have problems with films, maybe not. Maybe they'll have problems with coinfections or environmentals or nutritional deficiencies - or maybe not. To discuss all the facets in the first visit would probably make most patients feel like the doctor was all over the place and laying the foundation to charge tons of money on goose chases. So I wouldn't read to much into this - unless you asked point blank and were told biofilms are never an issue. If it was more a "one step at a time" approach then I'd try to give it more time.

 

On detox - I never found much that helped. The best tools for my kids have been anti-inflammatories, which is what Buhner's thinking is. His idea is to reduce inflammation before even beginning treatment, so that the body is in better shape to help itself. Trying to bind toxins never seemed to work here. Flushing kidneys with water or an ornithine supplement did help some (for my DD's mold issues).

 

For your results, Horowitz's Lyme Bingo is 23, 31, 34, 39, 83/93 - he feels that if you have any of these, you should seek treatment. I wouldn't bother to re-test. Most LLMDs would consider your clinical symptoms plus these results - and would probably treat you to see how you responded. One thought if you're lukewarm to this doctor is to see a different doctor for yourself and then you could compare the two in terms of style and fit.

 

I love Buhner and have found him an invaluable resource. I like tinctures because they allow you to titer doses up and down much more easily and in small increments than you can do with capsules. But the taste is really hard for kids. So we (and other moms I know) get empty gel caps from amazon and put the drops into the gel cap. My DD then swallows that (quicky so the capsule doesn't start to melt) and there's no taste.

One caveat - as much as I really respect Buhner and his experiences, I've had to really do my own research on the things he suggests. My DD is very, very sensitive to many meds and if someone in the room is going to have a negative reaction - it will be her. So I always spend time looking for the risks/side effects of the herbs he suggests and if any of those risks are too high, even if unlikely, I won't use it for DD. Herbs are just as potent as any medication and need to be treated with just as much respect, if not more, since potency can vary so much from supplier to supplier.

 

Always start with just one or two drops and stay at low doses for several days before increasing and always back down on dose as soon as you see things you don't like. There's no rush on this. No medals for suffering more than you have to. Inflammation is as much of an enemy as the bacteria. So don't rush the body. Buhner's dosing recommendations are for a 150lb man. Reduce target doses based on a child's weight and size. I would only introduce one herb at a time and I think often, you can get away with a few and don't need to use everything he suggests. He's just laying out the buffet table. You don't have to put everything on your plate.

 

In your research on herbs, try to find the active component and research that on Pubmed. I was all excited about Chinese Skullcap until Rowingmom told me that it can open the BBB. Probably not a huge deal for some, but a big deal for a Pandas kid. On the other hand, Dan Shen can strengthen the BBB - but shouldn't be used for more than a month without taking a month off, because of its effects on estrogen, copper metabolism and blood pressure. So really know the herb before using it.

 

Ask Rowingmom for her experiences on Bart, but since you've just started this, I would not get ahead of yourself. Lyme alone can also cause neuro issues. Doesn't mean Bart won't need to be addressed, but I'd caution against throwing too many things at this tiny body too soon. Kids can't tell you how they feel so it's much harder to catch negative effects. Slow, slow, slow. Not easy, I know. But you want sustainable progress, not a rapid but damaging response.

Edited April 16, 2016 by llm

[rowingmom]

1. Lyme follow up- saw a LLMD in NY area- he was not very open to mold (forgot to put mold exposure in signature line ) or herbals and Im not sure how much he is considering bartonella.

 

Considering the number of vectors that can and do transmit these veterinary diseases, I would not dismiss either bartonella or babesia infections in yourself or your children.

 

http://www.ncbi.nlm.nih.gov/pubmed/24936029

 

http://ilarjournal.oxfordjournals.org/content/55/1/46.full

 

https://parasitesandvectors.biomedcentral.com/articles/10.1186/1756-3305-3-36

 

Our experience has been that both of these infections can be treated with the herbal protocols recommended in Stephen Buhner's books.

 

 

….he thought mold was not as much an issue unless Lyme was causing one to become super sensitive to it….whatever- I know I will keep it in MY differential as far as causing neurotoxins….and plan on addressing it in the future if Lyme treatment isn't complete….

 

Good. Don't dismiss mold, especially if you have the genetic deletions that decrease your ability to detoxify.

 

herbals- he said he doesn't do herbals but is fine with me doing them.

 

Also good. If I had to do this over again, I would attempt the herbal protocols before resorting to antibiotic treatment (I found it to be more effective), or at least add in lowish doses of herbs to the existing antibiotic treatment.

 

Our LLMD dismissed DD14 after 2 years of (don't be shocked - biaxin, rifampin, plaquinel, azithromycin, minocycline, tindamax and malarone) at 80% improvement saying that she could do no better.

 

I didn't concur and continued adding herbs from first the entire bartonella protocol (which maintained DD at 80% for 7 months), and then the babesia protocol (even though DD was completely asymptomatic and negative testing for babesia through Igenex) which brought her to her now 100% improvement (no identifiable symptoms remaining).

 

To make these gains I never used Buhner's recommended dosages. 1/4 of the recommended worked well for both of us (I treated myself along with DD, same herbs, same dosages).

 

So my husband (we are both MD's) I don't even like saying that because despite having that title after my name I feel like I have been enrolled in the most intense medical class and have learned MORE from people on this forum than most ALL the M.D.'s I have talked with. I also don't want to be held accountable for medical advice…..I really don't have that much to offer anyways!! My only benefit I suppose is that other physicians have to give me some attn and not say Im insane (at least not too my face)??!!! But I digress- my point is my husband is a doctor too and this makes decisions quite sticky.

 

I completely understand. My husband is a PhD biologist and was completely against the idea of lyme as a chronic infection that could cause psych symptoms. Treating was tricky and very contentious for the first year or so until DD started showing observable improvements. DH is completely on board now, even with herbals, which makes life much more enjoyable.

 

Use your intuition, you will be surprised at how well it works. Let me tell you my "Spidy-sense" was tingling when our GP told me that all DD needed was Ritalin and a good spanking. I left and have never gone back. He was at one point the President of the Ontario College of Physicians and Surgeons, so never before had I second guessed him. At that time I just "knew" in the pit of my stomach that he was wrong. DD's ELISA was negative and even though she had every symptom of bartonella he refused to test for it. When her Igenex results came back positive for bartonella he still refused.

 

I am open to herbals, I feel that mold is a factor, I am learning a TON about methylation and he is on board really only now with that Lyme is a real diagnosis (that took over a year but he IS on board and for that I am grateful). He likes this doc in NY- Im underwhelmed. He put my DD- on just doxy…..didnt mention biofilms or cysts. she is very sensitive to abx so maybe he will do more and just wanted to see how she would tolerate this to be safe so maybe I need to be patient…? tell me this is a marathon and not to be frustrated? I have added serropeptase (I feel I am misspelling that) and am considering adding grapefruit seed for a cyst buster for kicks…maybe…..I need to make sure she is detoxing well first.

 

DD reacted very badly to GSE. The LLMD recommended it because of plaque buildup on her teeth from the antibiotics she was taking. Her ticcing became terrible. Blinking and head jerking so much she couldn't read and vocals so bad she could barely talk. The LLMD said yeast die-off. Buhner's associate said cytochrome P450 (CYP) 3A4 enzyme inhibitor. I don't know, but we have never used it again. Eventually it all calmed down after discontinuation and increased dosages of curcumin (Meriva) and Japanese knotweed - both anti-inflammatories.

 

She is miraculously doing ok on doxy- should that concern me she is not herxing more- mild MILD at most… but I think her supplements are helping? and again doxy is metabolized mainly through the gut not kidney/liver….I just keep thinking - are these things all hanging out in cyst form now?? agh...

 

Yup.

 

-thoughts on doxy solo

 

Mono therapy will not treat lyme or any of the coinfections. Please don't assume coinfections are not involved because you haven't tested for them. The body is not aseptic, and the fact that lyme (as well as bartonella and babesia) are immune suppressive will allow for reactivation of previous viral infections, as well as the body's inability to clear newer bacterial infections (strep for instance, or bartonella, or babesia etc.).

 

- what do you do for detox- I have looked into burbur and pinella- does that really help?

 

We tried burbur and pinella, as well as several homeopathic liver and kidney remedies which, as far as I could tell, didn't do a thing. Milk thistle (500 mg QD at bedtime) decreased ALT and AST back to normal when it started to rise during biaxin/rifampin treatment.

 

I would love for it to help her short term memory issues….

 

By far the best treatment for DD's cognitive issues was CSA - Buhner's combination herbal tincture of cryptolepis, sida acuta, and alchornea. So much so that DD's teacher called to ask what I had done.

 

I found myself that CSA helped my brain fog a lot, but that red root (which decreases the rouleaux of RBC across inflamed endothelial tissue (caused by both babs and bart), increasing microcirculation, was the real kicker.

 

we do lemon water, vit. c and many toxic mopping supplements, probiotics, digestive enzymes…..I guess I wonder about liver and kidney detox specifically.

 

We continue with milk thistle as well as lemon water, vit c, Epsom salt baths, magnesium citrate (150mg 8am, 150mg 3pm, 300mg 8pm), l-glutamine and NAC 3x weekly to help the body produce endogenous glutathione (while undergoing abx treatment DD used liposomal glutathione), probiotics, psyllium husk (to keep the bowel moving), and diatomaceous earth/organic cilantro tincture/orthosilicic acid as a natural chealtor of metals .

 

2. I am concerned about how she got this- maybe from our 16 acre farm running in the tall tall grass barefoot….OH MY WORD what were we thinking???? or from me???? so I have been really fatigued for a long time- thought it was concern about DD's issues or/ and having 3 kids back to back. Had a miscarriage 2 years ago in second trimester and recently with darn muscle aches and joint pains- what??!! tinging in feet, lightheaded, a need to lie down….agh but it all comes and goes and is worse when I slip up and eat gluten and around my period…..so I got the lyme test and I think my sweet and really supportive despite his hesitancy on LYME is going to croak

 

It really doesn't matter now.

 

Our LLMD's opinion is that DD acquired her infections congenitally because of her sensory issues at birth and her adverse reactions to her 15 month MMR caused perhaps by an improper immune response. My bartonella symptoms began approx. 4 years after DD's birth.

 

In my opinion your children carry your infections, and vice versa. Your husband may well carry them too because spirochetes (at the least) have been shown to be transmitted through saliva and other body fluids. If his immune system is functioning normally (not as much stress, not as many vaccinations) he will remain asymptomatic until such time as his function decreases.

 

My husband and 19 yo son are asymptomatic. But if they ever begin showing symptoms, I will know what it is.

 

Here are my results and tell me what you think???

I have 2 other boys and see things now that makes me wonder for them- 6 year old- more tired, groin pains and occ stomachaches but other wise does BRILLIANTLY in school. 4 year old- some irritability but NOTHING like the daughter and processing well. thoughts?

 

Muscle/tendon pain without injury should be considered. One of DD's major symptoms was stomach pain which would drop her to the floor several times a day. Cyclic IBS symptoms 2-3x monthly as well. Absolutely nothing I could pin down with allergic reaction/dietary restriction. These both cleared immediately with biaxin/rifampin (usually prescribed for bartonella).

 

My test: (I did not do confections to save money…will reconsider) IGENEX

IFA- neg

IgM-Igenex and CDC neg 18 + 23-25- IND 39 IND 41+++ 83-93+

IgG- Igenex and CDC neg 41++ 45+

 

-Thoughts on it?

 

kDa 39 is lyme specific. No other infection can illicit this response. Any reaction on this band indicates infection, even a weak one. Remember that lyme/co are immune suppressive and will result in an under-reactive result. Generally the healthier the immune response, the more reactive the result.

 

http://www.anapsid.org/lyme/wb.html

 

- would it be worth repeating after abx if you EVEN thought it was suspicious??

 

If you want to, but I would spend my money on coinfection testing, keeping in mind that there are many more species of these bacteria than are currently tested for.

 

- I will not hold anyone accountable but I do value GREATLY your input.

 

3. I want to add herbals to DD and possibly(likely) start myself- looking into Buhner- reallllly like what he has to offer but he says to do tinctures for kids….

 

Start with the anti-inflammatories (JK) and the immune supportive herbs (cordyceps), and systemically supportive herbs, hawthorne, milk thistle. I used JK tincture pretty much throughout DD's antibiotic treatment. If these appear to help at all, then consider the antimicrobial ones (making sure detox and probiotics are in place - herbs can be very antimicrobial, especially cryptolepis ). Start slow. Make sure there is no adverse reaction. If you get to a point of herxing (die-off which can not be detoxed sufficiently by the body), decrease to the last dose that didn't cause a herx and stay there for a month or so before increasing dosages again.

 

DD has corn/wheat allergy….rowing mom I think (if you want to give input PLEASE DO!!!) you made teas out of the powder on some? I am a retard so can you tell me HOW you did that? Like boil water, steep for x amount of time….did you add it to a chamomile tea or did the kids or you just chug it down??

 

You are not a retard, you are a doctor, I am a mere fisheries biologist who wanted to help her child. You were trained to think and solve problems - you can do this. Read Buhner's books thoroughly. The infusions are made by adding the herbs to boiled (not boiling) water and letting them sit until they reach room temperature (for each degree of temperature change different constituents are extracted). I usually do this in the evening for the next day.

 

Boil water and measure 1/2 cup into a Pyrex measuring cup. Add all of the next day's herbs. ie, if you are dosing 1/3 tsp 3x daily, add 1 tsp. Add all the powdered herbs you will be using into that cup.

 

For instance we are now using 1 tsp houttuynia, 1 tsp Japanese knotweed, 1/2 tsp cordyceps, 1/2 tsp lion's mane, 1/4 tsp reishi daily. This all goes into the Pyrex cup with boiled water. Cover (I use plastic wrap) and let sit until cool. Put into the refrigerator.

 

If you are dosing 3x daily, stir and measure 1 and 1/4 oz of the infusion into a shot glass (herbs and all) and then pour this into a larger glass with some water in it. Add the tinctures that you need (ie I add rhodiola, ginger, turmeric, cilantro, red root and CSA tinctures at this point) and then drink it down. Follow immediately with a shot glass of pomegranate juice which Buhner recommends and will cut the taste of the herbs. You get used to it after a while.

 

The next dose will be 1 and 1/4 oz, the final dose will be the remaining infusion.

 

I think the main reason I haven't done herbals is because its taken a ton of time to wrap my head around it AND the method of intake,……I may consult an herbalist but would love your input….really wish the LLMD we saw would just DO the decisions for me (I lie) ….I guess to have dialogue about what to do would be great (I think I will always have my hand in this somehow….

 

At one point I wished this as well, and I was happy to find our LLMD whom I thought would solve all the problems for me. But she couldn't get DD to 100% and wasn't versed in herbals so I had to head out on my own. The dialogue will be between what you read in Buhner's books and what you intuitively think needs to be done. You can of course consult with Julie or the other herbalists he recommends on his facebook page, but please know that they work a lot by intuition as well. This is not an exact science but a trial and observation kind of thing.

 

- herbals- method of taking for kids…..

- which herbals are best for Lyme- would you do ALL the suggested or just knotweed and cats claw?? Or add according to her main symptoms- neurocognitive……

 

Neurocognitive/neuropsych - I would treat bartonella. All the herbs, starting with low doses of everything before increasing anything. The protocols are synergistic. Together the herbs are more effective than apart.

 

would you add bartonella to the mix or do Lyme first/bartonella second…if I mix it seems like a ton of herbs??? again I prob should get a consult….

 

There are lots of herbs, you are correct. I used an Excel chart to daily chart/graph symptoms vs protocol. I did this for 5 years. It helps to be able to go back and visually assess the herxes and the improvements. LLM was good enough to give me a template and it made all the difference. If you would like me to give you one, just ask.

 

We never treated lyme per say. Only bartonella and babesia. During bartonella treatment DD's lyme WB began showing more and more banding patterns. The LLMD said this was because her immune response was improving. Most of DD's symptoms were bartonella and PANS.

 

ok thats it for now- I am indebted to this forum and moms that never give up.

 

Never.

Edited April 17, 2016 by rowingmom

[notthereyet]

First of all mold is a big factor in many autoimmune diseases and infections. Mold suppresses the immune system which makes pathogens and infections thrive. Many improve by just clearing their environment from mold or moving away from moldy environments so I'm surprised that this Dr is completely dismissive of mold factor.

Bile acid sequestrants like Cholestyramine are effective in removing mold and have low side effects. Second would be activated charcoal, not as effective but still solid. Another effective way of reducing mold load in the body is chlorophyllin (we use life extension brand) Another great reason for using chlorophyllin is that it has a right amount of copper which will balance zinc orotate . Other forms of copper can be toxic.

 

More on mold here http://www.survivingmold.com/

 

Here, we're big fans of Herbs and are on Buhner's protocols for Lyme, Mycoplasma P, Bartonella (DD13 and DS11.) diagnosed thru Igenex. Get the books and go on to full protocol, don't just do herbs and not other things that he suggests. The protocol is really working great for us and I'm not seeing any side effects so far, been on it for 4 months now with my DD.

 

Buhner http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_2?ie=UTF8&qid=1461336373&sr=8-2&keywords=buhner

 

http://www.amazon.com/Healing-Lyme-Borreliosis-Coinfections-Rickettsiosis/dp/0970869649/ref=sr_1_1?ie=UTF8&qid=1461336373&sr=8-1&keywords=buhner

 

It's great that you're thinking outside of the box as that kind of thinking will get you the results, classical medical thinking with their 3 weeks of antibiotics will get you nowhere. A lot of best Lyme, PANDAS, Autism Drs are the ones who's children fell ill or were affected one way or the other. They realized that their medical education had not much to offer and were digging for info and reading publish studies.

 

You should read this very carefully about dr Ann Carson writen by a betterhealthguy.com Scott Forsgren. (his website if full of best info available.

 

http://www.townsendletter.com/July2010/savechildren0710.html