Questions on best lyme combos....

[lmkmip67]

I haven't posted in a while, but we are still battling the lyme thing as the latest path. A quick run down as I know not everyone knows even who I am. Ian, 10, Pandas for 3 years now, 9 ivigs, no real improvement. Iffy lyme results with igenex, not positive, but Dr. B said looks questionable, Dr. J said yes, treat for lyme. We tried a combo of azyth and aug. this summer, Ian flared (maybe herxing, but it never ended). The Aug. seemed to be the one setting him off. So stayed just on Azyth until seeing Dr. Jones in Sept. He put him on azyth and suprex and the cyst buster, Major flare or herxing, whatever you call it. But we had to back down again. Had started them all at once, so started again slowly...adding in a bit at a time. Got up to the two antibiotics and one cyst buster twice a week. He flared, but we held strong for 3 weeks. Ian and i couldn't do it anymore. Flared, emotional, OCD bad, anger, crying fits, bad, bad. So Dr. J's office said cut back to just one for a week and call back. Ian calmed a bit, but is still overly emotional, ocd, etc. Very irritable, no focus. He was on prozac last year, it helped some. But with so many meds for the lyme, I wanted to take him off. So many meds at 10 can not be good. But now I am seeing Ian can not handle a double antibiotic dose, plus cyst buster at all. It has been going on three weeks now with just azyth again. Ian calmed a bit after the triple drug cocktail was stopped, but he is still the same, needs treatment, OCD, tics, all that fun stuff. He is in school, he plays hockey. We pay for it all with OCD rages at us, mood, arguing, swearing, etc. We discipline, but you know how that goes. When these kids are not feeling well, it doesn't do much good. We see Dr. B next week, but really we are under Dr. Jones now too. I need to call Dr. Jones back but I am wondering what I should ask for. DH and I have determined we can deal with maybe two antibiotics and putting Ian back on prozac for a while. It helped his OCD quite a bit and quality of life is a big deal right now as we have none. Does this sounds like a reasonable path at the moment? if so what two antibiotics would be a good lyme combo? He handles azyth fine. Suprax sets him off too, it seems. oR maybe it is the combo. Or should I ask if Ian should be on one antibiotic and a cyst buster? I am not sure what might be a good step to try next. Ian has no confections that we can find. He has been a pin cushion for years now, nothing else is found. Sorry for the novel, I just want to see if anyone had input on possible combos to try next.

 

Thanks!

[Hopeny]

Sorry I know how hard this is, Lyme is very annoying because there is no one size fits all. My friends son had recurring fever like symptoms, was on zith/cefdinr combo for a long time and then she decided to try Doxy and voila, it worked so well. For us, we have done well with: augmentin/biaxin, zith/rifampin and for my little one with her fresh case last summer zith/cefdinir. The Augmentin/Biaxin seemed to do a good job with the psych symptoms, have used zith/rifampin for about 12 months and am tapering off now. I also found that adding some supplements, under a doctors care/direction, has really helped. My daughter was 8 when we started is 9.5. now. I second guess myself almost every day when I hand her something like 8 pills to swallow but there is no denying she is almost 100% better, and we are tapering off. Personally I am staying away from Tindamax if possible, Dr J is great but you are also in the drivers seat.

[lmkmip67]

Sorry I know how hard this is, Lyme is very annoying because there is no one size fits all. My friends son had recurring fever like symptoms, was on zith/cefdinr combo for a long time and then she decided to try Doxy and voila, it worked so well. For us, we have done well with: augmentin/biaxin, zith/rifampin and for my little one with her fresh case last summer zith/cefdinir. The Augmentin/Biaxin seemed to do a good job with the psych symptoms, have used zith/rifampin for about 12 months and am tapering off now. I also found that adding some supplements, under a doctors care/direction, has really helped. My daughter was 8 when we started is 9.5. now. I second guess myself almost every day when I hand her something like 8 pills to swallow but there is no denying she is almost 100% better, and we are tapering off. Personally I am staying away from Tindamax if possible, Dr J is great but you are also in the drivers seat.

 

Thank you! That gives me a couple of ideas to ask about anyway. I just wasn't sure what ones were used to treat lyme beyond maybe 3 or 4 that are common. Yes, that is what he is taking, I checked the bottle, Tindamax. I don't think we will keep that up, it does NOT agree with him. Can I ask what supplements you have found helpful? I am considering coming back up here in MA to a local doc who also is an LLMD to treat Ian (she was at the conference in RI, and is knowledgeable, I believe). Closer to home. Dr. J is great, but yes, I feel like we get lost a bit and I have to stay on top of things. Busy office!

Edited November 13, 2013 by lmkmip67

[LNN]

Most LLMDs use one abx that's intracellular (zith) and one that's extracellular. We stayed on zith the whole 2.5 yrs we treated. We then rotated extracellular abx like rifampin, cefdnir (big herx, crosses the BBB, but also big gains), bactrim, augmentin. We didn't use dorxy b/c he didn't have many adult teeth yet. DS could not handle tindamax - not even half doses or only one day/wk. We tried it twice.

 

The supplements that helped most were Core (zinc+B6) from Biopure, a B Complex that had the right combos/doses for his methylation issues (for him, a decent amt of niacin to calm the anger and adenoB12 to help with overmethylation), Vit C & D3, magnesium and milk thistle. We used many other supps over the years, some helped for that moment, some didn't help much or it was hard to say. We used daily motrin for a long time (he can't tolerate curcumin).

 

While I wish we'd have been able to use tindamax longer (5 weeks was our longest stretch), he did get well without that on board. If biofilms/cysts remain an issue, you can also ask about nattokinase or NAC, which as mucus thinners and can eat away at the films. There are options.

 

FWIW - DS used to have horrible rages, very argumentative, had to be right, controlling, "scripted" everyone else's actions...he was a little dictator. Now, he's generally able to let things slide after a mild protest, able to accommodate opposing views and does what he's asked without it being a major confrontation. Some of it's maturity but most of it's recovery. Ian won't be incorrigible forever. You'll find the right blend of things for him and get him back. Persistence pays off.

[lmkmip67]

Thank you, LLM. I am feeling so much better after these couple of replies. And good to know they can get better without that cyst buster, because we tried it too and he can't handle it. I am feeling more positive now. I think we will ask about another combo, and go back on the prozac, low dose, for a while. Try to get some quality of life back.

[rowingmom]

DD took rifampin/biaxin for 1 year before we started adding other abx to the mix, including tindamax. I think in this way we were able to bring down the total load before adding the cyst buster.

 

When we added tindamax DD was unable to detox all the die-off with a continuous protocol so we had to pulse to get through tindamax treatment.

 

Before she was switched to a pulsed protocol herxing just got worse and worse. It was horrible. With the pulses, the herx was bad for a day or so (3 days on 4 days off), but would then taper and she would be good for the rest of the week. The herxes got progressively smaller until she wasn't herxing to tindamax at all. At this point we weaned from abx.

 

I wouldn't be averse to switching to a more local LLMD, especially if he/she is involved with ILADS and attends the conferences.

 

DD's best progress was made with malarone, even though she didn't test positive for babesia. It was like a switch was flipped. Calm, easy-going, and helpful. No frustration/raging. And we are now have a similar response to cryptolepis (herb for protozoan infections).

 

Our LLMD decided to add malarone to the mix when DD wasn't progressing as expected. Sometimes you just have to throw different combos at it until you find results. An LLMD who knows how to do this will be an asset.

[tu4four]

We are in a similar situation with my dd11 who has been having constant rages, issues with clothes, you have to breathe the right way (and there is no right way), chew the right way, etc. We just put her back on a low dose of abilify to take the edge off due to quality of life.

 

By no means is my daughter well, and we are doing some other testing like MRI and lumbar puncture. But I would say this....we see an LLMD in Colorado because, while he does treat aggressively with abx, he also uses lots of herbals and supplements.

 

When we started treating this, I scheduled an appointment with Dr j. I love him based on reputation and what he has given up for our kids alone. But while we were waiting, I realized that some completely different (and more traditional joint issues) with my older daughter were probably also lyme. So I had to look for someone who was within driving distance and take my whole family.

 

That one (dr c in mo) did not work out for us, but then we found out about our doc in Colorado. Like I said, my dd11 is not well yet. But he keeps looking. He does ART, and as kooky as it sounds, I believe it works.

 

Appointments are inexpensive (he takes ins), but the cost of supplements has been high because my dds have needed a lot of them. I would think all. In all, it's probably comparable to dr J's cost.

 

Anyway, please know that I am not saying anything negative about dr J...

 

We are still doing some other testing...MRI, lumbar puncture, 23andme, etc because we are looking at what is keeping her from healing, and I think it's possible that encephilitis is part of the picture. Our LLMD did give us a cyst buster this time. And we discussed mild testing, so we'll see what comes of that.

 

I know it seems like a lot, but, like you, our life has become unlivable. She is a little better on abilify. We have our first appointment with a new immunologist in Colorado this am. Hoping he can help us line up an ivig so that we'll be ready to go with that if lumbar puncture shows nothing.

 

Good luck to you. Pm me if you want our doc's name.

[tu4four]

Mold, not mild...

[Hopeny]

 

Sorry I know how hard this is, Lyme is very annoying because there is no one size fits all. My friends son had recurring fever like symptoms, was on zith/cefdinr combo for a long time and then she decided to try Doxy and voila, it worked so well. For us, we have done well with: augmentin/biaxin, zith/rifampin and for my little one with her fresh case last summer zith/cefdinir. The Augmentin/Biaxin seemed to do a good job with the psych symptoms, have used zith/rifampin for about 12 months and am tapering off now. I also found that adding some supplements, under a doctors care/direction, has really helped. My daughter was 8 when we started is 9.5. now. I second guess myself almost every day when I hand her something like 8 pills to swallow but there is no denying she is almost 100% better, and we are tapering off. Personally I am staying away from Tindamax if possible, Dr J is great but you are also in the drivers seat.

 

Thank you! That gives me a couple of ideas to ask about anyway. I just wasn't sure what ones were used to treat lyme beyond maybe 3 or 4 that are common. Yes, that is what he is taking, I checked the bottle, Tindamax. I don't think we will keep that up, it does NOT agree with him. Can I ask what supplements you have found helpful? I am considering coming back up here in MA to a local doc who also is an LLMD to treat Ian (she was at the conference in RI, and is knowledgeable, I believe). Closer to home. Dr. J is great, but yes, I feel like we get lost a bit and I have to stay on top of things. Busy office!

 

Here are the supps we have found helpful, all under a doctor's guidance. Sometimes its hard to know what's working. I use Pure brand, thorne and metabolic maintenance, and only nutramedix for the herbal drops, any other brands I indicate below. I hope this helps

Vitamin D3, 2000-4000 IU depending on her levels

Enhansa (curcumin) 600MG

Milk Thistle (Silymarin) (for liver)

Klaires therbiotic 50BN CFU

Quercetin, 200 MG (helps with asthma tremendously as well)

Samento - 10 drops (started with 5)

Burbur 5 drops every 4 hours as needed, have not used in some time extremely helpful for herx, detox. I have also used Nutramedix parsley drops.

5HTP - recently added, 100 MG

L Carnitine - 250 MG

Vitamin C - Sometimes, source naturals buffered chewable

Melatonin rarely, source naturals

Have tried. NAC, it was pricey and couldn't see if it was making a difference, but out integrative is big on it and so are many others.

Omega - just never found one I could get DD to take without complaint

MTHF, B12 methylcobalimin, B complex - DD has one copy 677MTHF, I have never been able to get this MTHF/B12 to work properly, every time I use MTHF regularly DD starts her compulsion which is skin picking. I was hopeful that this would be a huge help but I am still unsure how to make it work. DD tests low in B vitamins as well.

The mother of all supplements for us was low dose compounded artemisinin (sp?) our LLD recommended from Hopkinton labs, I was extremely afraid of it and skeptical. After one week of using essentially ALL of DD's pain that we had not been able to cure over 1.5 years was GONE. The stuff is magic, we tried so much over such a long time and nothing worked for this kid's pain, sometimes she would beg me to help make it better, and then poof, gone in one week on this herb, For two bottles you could buy a nice Coach purse it's a fortune but really was like a miracle for us. We are using it for 2 more months which will be a total of 4 months for good measure.

Something else I would consider and have used myself: reseveratral or Japanese Knotwood.

Something that caused a horrendous, horrible herx for us but works for others:Banderol. DD started expressing suicidal thoughts again within a day of starting it. Bye bye banderol;

[nitshel]

This has been very useful reading for us. We are about to embark on Abx (long term) for our DS. I'm really nervous despite the Enhansa, Immplex and other herbs we have prepared for him as we start Abx. Primarily I am scared of long term Abx issues - gut issues (DS always has these with Abx), immune issues and god knows what else.

 

I just dont want to face the prospect of destroying some other part of his body through months and years of high dose Abx. Kinda like the cure being worse than the disease (although its hard to see what could be worse than this insidious disease). I know that some Researchers say PANS kids can tolerate long term Abx well but I can't help feel that we are "carpet bombing" the body and there will be major collateral damage...thoughts? gudiance from others who have been through this?...

[LNN]

My son did just fine on abx for 4+ years but at the end of treatment earlier this year, at the time he probably didn't need abx anymore, he developed gut issues doe to yeast. So since your son is already susceptible, I think you have a valid concern. You can get Stephen Buhner's books http://www.amazon.com/s/ref=nb_sb_ss_c_0_4?url=search-alias%3Dstripbooks&field-keywords=buhner&sprefix=buhn%2Caps%2C185 and look for an LLMD who's knowledgeable in using herbals. It's not clear to me if herbals are smarter than abx and somehow kill bad bacteria without killing good bacteria or if they present similar "kill everything in sight" risks. Buhner's books are on my Xmas list so maybe I'll get my answer in 2 weeks.

 

For my son, we've used odorless garlic, nystatin, diflucan. To protect the mucus lining, we're having good success with l-glutamine and digestive enzymes. The probiotics I've used with success (in doses of 50 billion CFUs) are CP-1, Theralac, Truflora, and Kirkman's Bifido Complex. We stay away from Sacc Boullardis (aka Florastor) as my son reacts badly to it. But others find it well tolerated.

 

In hindsight, I wish I'd paid more attention to the gut all along. But also in hindsight, I'd say cleaning up the yeast issues after the parade is far preferable to the insanity of lyme and I'd do it all again in a heartbeat. I think it depends on how sick you are, for how long, how healthy your diet is...but for us, the harm from abx was far less than the lyme itself. It's a valid concern but I think there are things you can do to mitigate damage as you go along. But you're right, it's not a perfect solution. There are certainly trade offs.

[nitshel]

Thanks LLM - our LLMD told us to treat herbs just like medicine - they are potent in their own right. Did you ask your LLMD about potential cross-reactions of herbs with each other - or did you just start off small and see what happens? And there are so many herbs out there! Also, where do you buy your herbs/ supps from?

 

LLMD has us starting off with Cefdnir to attack the spriochette form of Lyme - and then adding Abx's as we go.....