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Posted 4/30/2015 7:02 AM (GMT 0)
hi all,

can I vent here for a moment.

my son had his latest llmd appt. last Monday. He's doing very well; went 4 weeks symptom free, and previous to that has had the last 3 months+ with only 4-5 days of symptoms, all very mild (joint pain usually).

But, I admit that I've been going very slowly with the herbs he uses, b/c in the fall he had some motor tics that lasted a few months, and whether it was true or not, I thought perhaps the herbs triggered them (lyme die-off). Maybe they did, maybe they didn't, but I got gun shy with them.

In Feb. the llmd said I needed to up his dose. Well, long story short, I didn't, not until now after this last appt. (b/c was still paranoid of a motor tic herx)

And, also he's doing so well ,I thought maybe a low dose was enough.

Ok, here's my vent…so at his appt. on Monday she told me I need to do all or nothing for him. To either give more of the herbs (the dose she recommended, working up to it) or to not give him anything at all. B/c she didn't think the low dose was doing anything.

and, maybe she's right, in fact, I see her point and agree that I do need to step it up , so that the infection is knocked down so much that he's symptom free (that has always been my goal anyway!). so now I agree, I need to get brave and just give more dose, and not stress about herxing.

it bothers me sooooooo much, that she actually suggested that I do all or NOTHING.
The going all in advice didn't bother me really, it was the "stop everything and see how it goes" suggestion that did.

She said it like this: that I should do one of two things:
1. go all in, dose more, etc.

or

2. stop giving it to him altogether and "see how his immune system handles it", that maybe his immune system would be okay with it, or something like that.

and she said it like it was a real option. Like, well, maybe it would work for him to do that.
What??? no way! I know what she wanted me to do (the going all in), but it really makes me mad, to tell the truth, that after a year of treatment she would seriously suggest that stopping treating him before symptom free was an option. That she would even suggest that.
I don't know if she was mad at me for not following her dosing advice for him last Feb., and so wanted to kind of cut me loose, or what. But it makes me mad that she would even suggest that. My mom told me not to get upset, that maybe she knew I wouldn't go for that and thought it would give me the push I needed to dose higher.

But I think she could have said it in a different way. I think she could have tried to explain her opinion instead. And again, I went to low doses, b/c in the fall he went into motor tic orbit when I increased it. That could have also had to do with a couple of other triggers, but it made me really scared that that would happen again. I wasn't trying to be defiant or not help him.

I think she could have made her point about the importance of the right dosing without seriously suggesting (and she was straight faced, sincerely serious) that I just stop all treatment of any kind while he's still getting symptoms of foot, knee and leg pain once in a while (4-5x/month) and sometimes feeling a need to tic. It made me feel like she didn't care about him. I mean, what if I was someone who took her up on that choice? I wouldn't, but she doesn't know that for 100% sure. I question her now. Maybe I'm over thinking it, but it bugged me so much.

I like her overall, she's usually nice, and a member of ILADS, etc., blah, blah, blah, but I have to say again, that bothered me a lot. It's not sitting well.

I am upping his doses now, b/c I want what's best for him, and she made her point, but I don't think she needed to suggest that I stop treating him. She could have stressed the higher doses in other ways. This is all hard enough without feeling like the dr. doesn't care in the end if my kid ends up with lyme issues down the road b/c we didn't see it through to completion. It made me feel like she didn't care about him, even it not true. Why would she suggest that.

Ok, vent done. Thanks for listening if you had the time.

Post Edited (stacestar) : 4/30/2015 1:11:58 AM (GMT-6)

Posted 4/30/2015 7:23 AM (GMT 0)
Stace:

Concerned mother here, too LOL

Ok, so maybe she means that at this dose, it doesn't kill anything.  That's why she said sort of, up it up, or stop it (because is not doing anything?)  How old is your son?  Some kids recover quicker than others. 

I'm curious, did you ever do abx or only herbals?  What herbals does he do?

If it makes you feel better, my son used to have seizures and tics, so I understand your concern.  Both seizures and tics were resolved with treatment.  Many symptoms persist while many others resolved.  I do not think the tics were from the herbs.  I think most likely it was from toxins.  Increase Detox and increase dose--that's what I would do.

It seems buhner believes one doesn't develop resistence to the herbals, but I am not convinced.  If the bugs are fed herbs at low doses, they may become used to it and eat it like candy eventually, so it may become innefective even at higher doses--spirochettes are super adaptable, so why not??  I really don't know...

Posted 4/30/2015 12:24 PM (GMT 0)
My son has OCD, TICS and had ODD. I think she said this because if you are not at a level of doing anything and killing anything, why waste the time, effort and money. My son was a mess for a long time - tics changed, got worse - got out of control and I felt awful. He still has a few after a year now, but we need to keep pushing, changes meds/herbs, increase things, herx, whatever it takes. At this point I don't want to stop the 400 mg doxy, we were very slow to get to that level, and we need to increase the rifampin, also slow, but once we hit the killing level, we need to get rid of them all. This week I'm telling him not to stop until we hit with cyst and biofilm busters.

It's been a road to h... and back for both of us and I'm not sure I'm gonna make it, physically and mentally, but we've come this far, I just want to blast it out of him and give him the next 70 years of his life well.

We missed Fresh. and Soph. years of school already, what's another? REALLY sad, I know. I have four children and he would have been awesome in HS after knowing what the first two could do, he had it ALL.

You should read Cure Unknown - VERY powerful book and you will understand, this disease is wicked and relentless. There is no being cautious, it will come raging back - I've lived it with my son. They treated his knee swell in 2010 when his blood work was off the charts at just Labcorp. Said "his antibodies will take care of the rest". Yeah, right. By 2013, totally psychotic with all the other things too. :(

It sounds like she wants you to understand the severity of all of this, but realizes you don't want to hear it (none of us do) and you will probably do what you want anyway, so she laid it on the line. I have had many surgeries and serious illnesses in my life, but I believe you bite the bullet, deal with however hard it is and get through it 100%.

In the case of lyme, you can't just put a little band aid on it, you have to bring out the tanks and blast it. Herxing is part of it, another thing to deal with.

Trust me, ours was REALLY bad. At one point he was spitting all day, EVERYWHERE. All I did was clean up after him each morning while he was still sleeping. A few weeks of that, it was awful. He was beating himself so hard I thought he'd crack a rib or stop his heart (that was before meds when we committed him and they said he was "bipolar" ... again, year right.

Like I said, my nerves, health, everything is pretty shot. I'm in therapy, it shredded our family and marriage, but he is finally back in school part time and home instruction. He is still not nice to me at all, or my husband (we bring him healthy food and meds and make him do the hard things)... and he's on the computer 24/7. Now we need to start introducing discipline after 2 years, this should be fun. BUT, if not, we'll have a monster on our hands that is not responsible and can't support himself. AT 16 you really can't mess around.

Feel free to email me, it's activated, if you need a shoulder or strength. Doing minimal stuff is only going to drag it out forever...

HUGS! Remember, your LLMD is experienced, seen it all every day and knows what should work - you can get through the herx, it's a long life for your son, you want it to be well as soon as possible.
Posted 4/30/2015 1:11 PM (GMT 0)
Simela1 and lovemychildren

thank you for your replies,

yes, I do think she was trying to say "p-- or get off the pot". (I hate that expression!, so crude sorry!)

but I think that's what she was saying. (what she didn't know, and maybe I didn't say it clearly, was I thought I was doing something effective, even if very slowly; I thought since herbs are potent, that a small dose would still get something, but if I'm being honest, I knew too I was probably going too slow)

simela, my son had 14 weeks of abx and then we switched to herbs for a couple of reasons; he developed yeast issues (fluconazole helped with that) and, after 14 weeks he was doing so well, that it seemed like (and I believe it is; llmd agrees) a good way to "end" the treatment. (after the initial 14 weeks abx, he was about 90% symptom free, I'd say. And he had had a lot of symptoms too, lots.)

anyway…yeah, she did say "you don't want this to take 5 years". And, of course I don't.

I do still wish she had said it a little different, not acted like the not treating was an option, b/c I think after a year that hopefully she knows I wouldn't go for that.
I wish she had understood that in my mind, I honestly thought the low dose was getting something; I wish she had just explained things, without that "stop treatment" line.

But different people have different personalities and ways of doing things I guess. I need to get over the "way" she made her point and let it go I know.

lovemychildren, I read "Cure Unkown" Feb. 2014. Put the fear of the disease in me for sure! That and other people's stories, and seeing what he went through last year when symptoms started, are definitely reasons why I would never want to stop treatment before months symptom free. (I think that's why the suggestion bugged me so much. I was like, are you kidding!) But, again, I have to let her way of making her point go. b/c in the end it worked…point made.

and, lastly, and I hope you both have read this far, b/c I want to say thank you again for replying, and for understanding. I'm thankful that my son is doing really well now. He's a little boy who feels good, good energy, but who gets some joint pain(minor even) 4 days a month or so. Those tics we saw last winter…they stressed me, frayed my nerves, scared me... how they went on and on for a few months. The fear of them returning are the exact reason I hesitated with dose, but I can't let the fear of a herx keep us in the same place. I have to finally admit that.

This is like being in a club, a group, you never in a million years would sign up for. A scene I'm long sick of, and I'm sure you guys are too! I'm sorry you and your kids are going through it too. I do have to say, that the other moms and people, like yourselves, that I've come into contact with are some of the best people I've ever met. Kind and generous with information and advice, and most importantly support. Thank you guys for your support!

Post Edited (stacestar) : 4/30/2015 7:16:21 AM (GMT-6)

Posted 4/30/2015 1:19 PM (GMT 0)
and lovemychildren, sorry too about the toll it's taken on you. I have to get my son off to preK right now, so I can't get long here (like I so often do ;) )
but, I can relate to the marriage stuff you mentioned. Boy has this stuff taken a toll on my marriage too, well, it is getting better, but last year…not good. And, still we can't talk about it (lyme).

Anyway, maybe I'll email you sometime when I have time. Thank you for that offer!
Posted 4/30/2015 1:45 PM (GMT 0)
I agree, sometimes it's the WAY someone says something and they could be kinder (like my own dr.), but then I stepped back and thought and realized how much they really care, and sometimes they are just frustrated with us and lose it on us, wanting so badly to fix us! That is after all, why they are doctors :).
I dealt with the same thing this past month, muttering what I would say to him yesterday at my 6 week visit - yes, every 6 weeks now for my heart. But then realized he meant well, he has long days and stress too....

Glad your son is feeling well.

I have my older one (has always been symptom free) on a lifetime protocol "just in case" one spirochete lived all those years ago. Just put him on the past couple of months for lifetime protection. He fought with me at first, but I asked our LLMD and he advised me and finally my oldest agreed. He sees what the younger one had and does not ever want any risks ... now knowing he was undertreated also.

Hang in and try to forge through it. Herxing and all that is nothing for little ones - my one daughter says he doesn't remember anything before age 6 - so you have time to blast it out of him :)
Posted 4/30/2015 2:36 PM (GMT 0)
stacestar - I am, of course coming from a different point of view. K has been doing really well with low doses and I am believing more and more that herxing is not necessary.

I think perhaps your LLMD is trying to change things up; and that if you don't follow her suggestions, what's the use of using her time/skills. But I don't agree with her recommendations in the least, especially when it comes to herbs. I don't feel it has to be "all out" or "nothing". Do you like and trust her? It seems as though you are missing some of that.

That said, we aren't seeing our LLMD anymore and I have the prerogative to change things up when I feel comfortable.

There were a couple of times when our LLMD suggested abx that I didn't agree with. When I told her I didn't agree, she suggested something else. She knew I had done my homework and made me feel like my input was important.

Julie has told me that if you have enough different herbs on board, that resistance will not happen even at low dose, and that low doses over long periods are just as effective as high doses over a short course.

K has now been on 1/4 doses of Buhner's full bart protocol for 2 years, CSA from the babesia protocol for 1.5 years. Approx. 6 months ago I increased houttuynia (for bart) to 1 tsp/day from 3/4 tsp/day. There was no herxing. We remain there.

1.5 months ago I increased CSA from 15 drops BID to 15 drops TID. If I had tried that 8 months ago I would have seen an immediate babesia herx reaction. There was no herxing - she didn't even realize I had done it - and no improvement from her now excellent cognitive/executive function baseline. This is an indication to me that her bacterial loads have significantly decreased. In no way does it indicate development of resistance.

The symptoms level bar on her excel charts now sits at 1. Only a suggestible tic remains, and she is even able to supress that now. When we started out in 2011 the level was 120.

I understand where you are coming from with the detox drops/licorice tincture. I am still afraid of the bottle sitting in the cupboard. I don't want to do anything that starts ticcing again. But the more I experiment with Buhner herbs, the more I realize, that for K anyway, it is the detox drops that are the problem, not the antimicrobials. Why, I don't know. I hope to eventually find out.

If you want to keep working with this doctor, I think you will have to try increasing dosages. Perhaps your son has been on low dose long enough to get the loads down, and you could try increasing a little. One herb at a time, with at least a week between changes.

I always find out something new when I experiment. If there is herxing you will know that there are still infection issues. If there is no herxing then you will know that perhaps those bacteria are not now present at significant levels. Perhaps this is the information your LLMD is trying to find out.
Posted 4/30/2015 3:33 PM (GMT 0)
Just an fyi

My son is not just on ABX and I'm not pushing that as the only way.

He is also on herbs and detoxes and a limited (healthy) diet, just not as strict as some as it's hard to take away everything from a 16 year old boy and he is not on board with things, so I have to tread lightly until he really gets it and has to care for himself.

He is also not all well yet, so, maybe I'd doing it all wrong. I really don't know anymore cry

Post Edited (Lovemychildren Mom) : 4/30/2015 10:00:07 AM (GMT-6)

Posted 4/30/2015 6:46 PM (GMT 0)
Actually, I think I may leave the site as well, or at least not be posting anymore.

I have been quiet lately as things have not been good.

However, here I am at 11 months and my son is not well.

Members like Rowing Mom and Heather's Dad have well children and have done/do far more than I ever can imagine.

I am trying to trust in my LLMD with 35 years experience, but his protocol stays minimal and simple and slow.

I don't know whether that is a good thing, a bad thing or if my son will get well, but who am I to be up here encouraging or giving advice.

Wish you well and hope all heals.
Posted 4/30/2015 9:50 PM (GMT 0)
lovemychildren mom

I hope that you stay.

I'm really sorry things haven't been good for your family. I think rowing mom and heather's dad would probably be the first to say (from knowing their situations through this site) that their children didn't get better overnight either. It's such a long, hard road and I'm sure you're doing your best, and I'm sure that's it is enough!

you asked who are you to be giving advice? You are just who mom's like me need . I need to hear from a variety of people and get different ideas and thoughts, and experiences. I need to hear that I'm not alone. And, you're not either.

I do think your son will get well! My son is doing well, it's true, but here I am 15 months into treatment and we're still not there yet. I believe he will be there very soon, to symptom free. Truth is, if you read my older posts, I was saying this last summer too. It's not easy, it's not fast. But I still believe it, and I believe it will be by the end of the summer that he's symptom free. I'm willing it and proclaiming it! (I think I got on an aside a bit, sorry)

But you too, hold on! and believe! Who knows, maybe your son's breakthrough is right around the corner.
My son right now is watching "The Polar Express". Seems strange on this 75 degree, sunny day, but I bring it up, b/c I always love and choke up on the part where his ticket says "believe", and it says on it, "round trip". Last winter, I felt like God was telling me to believe that this whole dam- thing would be a round trip experience. That we were in it, but that we'd be back out of it again someday too. Not a one way event.
I pray that comes soon for all of our kids.

As far as trusting you llmd, if you have peace with that, than that's what's to do. REad as much as you can, ask as much as you can, but also take his advice since he has so much experience. One thing I've learned is that there can be more than one way to get through lyme. (herbals, abx, homeopathy).
now, if you're not happy with your llmd, than I don't think it's bad to switch either. We're on my son's second one, and here I am not 100% impressed, although I do think she knows things to help.

and one more thought. You said, maybe you're doing it all wrong. funny you say that b/c this afternoon (been a busy one away from computer) anyway, this afternoon I was feeling this way a bit. I thought to myself, "I bet my son would be symptom free if I hadn't taken 3 months off all herbs when he was ticcing. I bet he'd be symptom free, if I hadn't taken 2 months off all treatment last summer before we started herbs, while we were doing summer traveling". I kept thinking that "if only" I had done this, or that. But you know what? We can't do that to ourselves. We are all trying our best, making decisions that we honestly and sincerely think are the best ones at the time we make them. And, who knows, maybe they are? and if they aren't, I believe there is still time to make up for them (and here I refer to me not treating for a few months last winter, etc..)

Don't be too hard on yourself. You love your kids, and you're helping them; you're doing a good job!
We all have advice and support to offer. I personally hope that if you want to stay on the forum, that you do! Wishing you and your kids well too.

(and I can't stress enough, that you're not alone. Us mom's who are going through this. I don't know, but…it's a horrible refining fire type of thing, if that makes sense. You're not the same after it, it's true. I know I don't know your whole situation, but just to let you know, you're not alone. Christmas morning my son was ticcing so badly. He couldn't go 20 seconds without this dystonic tic thing, all day. It was for days before and after too (and this had morphed, b/c he had been ticcing since Oct. anyway every day, but it was through the roof on Christmas day). On Christmas late morning, I remember going into the bathroom and just crying for several minutes, quietly though so my son and my husband wouldn't hear me. I held onto the towel on the towel rack, kind of pulling on it, and it came off the wall. I didn't know I was pulling that hard, but I guess I was, while I was crying. Then I washed my face, put on a smile and went out for Christmas brunch. I was so tired, and so confused
as to why the ticcing hadn't stopped, and depressed that lyme was still going on a year later.
I guess I just wanted to share that, b/c whenever other moms have shared with me their struggles, it makes me feel like I'm not alone, and not that I want anyone to go through this, but to know you're not alone makes a difference.
And, to end on a positive note, I really do believe that our kids (and all of them in treatment) will get better. IT's not easy. It confusing. But I do believe it will happen, 100% symptom free, healthy. I believe it 100%. sending you a cyber hug now!

Post Edited (stacestar) : 4/30/2015 5:44:44 PM (GMT-6)

Posted 4/30/2015 10:17 PM (GMT 0)
thank you!

Post Edited (Lovemychildren Mom) : 5/1/2015 4:52:58 AM (GMT-6)

Posted 4/30/2015 11:44 PM (GMT 0)
yes, we love our Disney movies too! and Disney station. and you're welcome!

also, Rowingmom, thank you for your thoughts too! When I've got more time tonight I'll come back, b/c I have a question about Julie, the herbalist.
Posted 5/1/2015 1:13 AM (GMT 0)

Lovemychildren Mom said...

However, here I am at 11 months and my son is not well.

Members like Rowing Mom and Heather's Dad have well children and have done/do far more than I ever can imagine.

K was not significantly improved after 1 year of treatment. Improvement didn't come until the end of year 2 when the LLMD started to regularly switch things trying to find out why we weren't done already.

Here is K's timeline. I have posted it before, so hope I am not being too redundant.

Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.

2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.

2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.

2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.

Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever.

June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.

April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.

Sept 2013 - CD57 45.

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.

Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.

Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%

I have been at this for pretty much all of K's life. And it hasn't been easy. But as a Mom you can't give up. If one thing doesn't work you try another. You read and read and try different things. Eventually you will find something that gives a clue as to what is going on.

I was lucky to find a LLMD in the US that diagnosed bartonella. Our doctors in Canada (family physician, pediatric psychologist, pediatrician) all told me that K had psych difficulties and needed psych drugs. I wasn't satisfied.

The LLMD didn't diagnose babesia until I trialled the herbs that caused K's babs herx reactions. If I hadn't on a whim, tried that we never would have known what was hindering her recovery from bartonella.

Every child is different with different infections and loads. Different detox function and methylation ablity. Unfortunately there is not any one protocol that will help everyone in the same manner. If there was and your child wasn't recovering as you would like, then you would have cause to be frustrated.

But as it is, all you can do is learn from the protocols you have tried, and carry on from there.

If you don't give up, you will surely find an answer at some point, or at least some kind of improvement. If you don't feel like posting, don't. At some point there will be someone who will have a question that you will make a significant contribution to answering. You just tend to gather stuff the longer you are at it.

I have been at this K conundrum for 13 years now. I hope we are almost done.
Posted 5/1/2015 5:37 AM (GMT 0)
rowingmom,

I meant to come back here earlier and write, but fell asleep on the couch. pure exhaustion from digging up/in the garden today.
anyway, I wanted to say thanks again for your reply.

It's hard to navigate this all sometimes, but I keep trying. :)

To me, Buhner's opinion of herxing not being necessary makes sense, and I still don't think it's wrong to dose low for sure. In fact compared with where she really thinks my son's dose should be, what we talked about doing is still lower, and a compromise of her opinion, so I'm glad for that.
In my son's case the llmd may be right that I need to up the dose a little, b/c I felt like upping it a bit too (but not to 15 drops 2x/day, which she recommends!) before the appt. even. But, actually, I do think she's wrong to say that a person shouldn't dose low sometimes, that it won't do anything, and that there's a goal to get up to a certain number of drops, b/c that's where the healing will happen. I disagree with her thoughts on that, and don't think low dosing is always wrong, so thank you for saying what you said.

We decided at the appt. to meet in the middle.

I'd been giving him 1 drop a day. Besides being afraid of the motor tics possibly coming back, honestly, the past month he was (and thank God still is) doing so well, that I would think to myself…"hey, this is working. Why change what's working."

by working I mean that when I started the herbs up again in Feb. to the end of April at 1 drop, he went 4 weeks symptom free! I feel like he did make ground. I thought "it's working" and felt ok to dose so low.

But, then the foot pain last week. I won't get discouraged though.

the llmd said she thinks that for his body weight and age he should be able to tolerate 15 drops/ 2 times a day. (But like you rowing mom, I don't think it's an "all or nothing", one size fits all thing.)

She asked me to work up to 5 drops/2 times a day. I told her I could work up to that. Increasing a drop each week, starting with 1 drop 2x/day.

So, I'll increase it that much, but I feel like I'm still at least following my gut with going slowly.

I think she sees the herbs the way she sees synthetic abx (maybe she's correct to do so, but I don't know). In other words, if a person is a certain age and weight, with a specific problem, then such and such amount is their dose or "Rx".

She did acknowledge that herbs seem to be more potent than abx.

I don't want to waste time, and I get confused as to what's right, but I think also, that the proof is in the pudding, and he feels good, and did go 4 weeks symptom free. Then again, on the other hand, although he's not ticcing he told me he feels like it sometimes. And he's been at 4-6 symptom days (not including ticcing this past winter) a month since Sept. So, we've got these infections to address still.

I get long. I wish I could sit over coffee and talk about it, instead of getting long with posts!

as far as trusting this llmd I'd say I mostly do (note mostly is not all). She's a member of ILADS, she has always seemed open to speaking with other llmds, which I like, b/c then she's always learning.
But, that said, I do wish she had even more experience (like 20 years, instead of 4 with lyme) and now that son's on herbs I wish she was an herbalist! I wish her to be and know everything! ;) I don't think she knows all she could about the herbs, b/c she's relatively new to them for lyme.

And this is why I consider the help of that herbalist Julie. I feel like my son is doing so well, that maybe we are down to the end of it, and it's a matter of clearing up last bits of bart. and lyme, and trying babesia herbs just in case. I think I may want to call her. Does she still take new cases?

ok, I'll wrap this up.

oh, one more thing! I'm so glad that K's symptom free now! I'm sure you are almost done!

Thank you again for the thoughts and reply. You've lived and learned and I'm glad you share it!

Post Edited (stacestar) : 5/1/2015 12:42:50 AM (GMT-6)

Posted 5/1/2015 2:06 PM (GMT 0)
"by working I mean that when I started the herbs up again in Feb. to the end of April at 1 drop, he went 4 weeks symptom free! I feel like he did make ground. I thought "it's working" and felt ok to dose so low."

I feel you are right about this. This is a significant decrease in symptoms, which coincides directly with the use of herbs. Correlation is not causation, but gives you some possible understanding.

"But, then the foot pain last week"

So perhaps the infection is still breaking though. You need to get to a point where you don't see the cyclic symptomology any more.

"She asked me to work up to 5 drops/2 times a day. I told her I could work up to that. Increasing a drop each week, starting with 1 drop 2x/day."

I think this is great! If you get to a point where herxing begins and doesn't taper off after some length of time, decrease the dosage and remain there for a couple of weeks (to slowly reduce the bacterial load) before trying to increase again. I wouldn't be pushed by your LLMD's recommended timing. Take it easy and increase 1 drop every 2 weeks if you feel you should. As long as you are trying to increase your doctor will probably understand.

"I do wish she had even more experience (like 20 years, instead of 4 with lyme)".

There weren't many lyme doctors 20 years ago, and their methods of healing were likely very mainstream. If she is affiliated with ILADS, attends the meetings and consults with other LLMD's she should be on the cutting edge. Even the fact that she is open to using herbs and helping your son heal with them is significant. Our LLMD cut me loose at that point - all she knew was abx treatment and didn't feel comfortable with herbs.

I don't think many LLMD's are familiar with herbal treatments, which is why I consulted with Julie, and yes, she is still taking consults. If she is full there are others. Remember, consider using any of the herbs she recommends, but do your own dosing. Working up from very low amounts - you know what to do.

https://www.facebook.com/stephen.buhner

I recommend the following people: Julie McIntyre in Silver City, New Mexico ([email protected]);

Tommy Priester in Lincoln, MA ([email protected]);

Gordon Medical Associates in Santa Rosa, CA ((707) 575-5180)
Posted 5/4/2015 4:23 AM (GMT 0)
stacestar,

I fully understand your reasons and whatever you did, you obviously did it well enough to improve your son's condition. I was simply trying to reason and give you my take on LLMD's response to you. We trust our instincts and if something does work, of course we just keep doing it. But perhaps it is time to increase a little, gently and carefully so that adverse reactions don't occur. I think your son will be ok if you increase a little. Doctors are people too, maybe she just had a bad day and she was a little jumpy. But you are right to be concerned, whenever I increased my son felt worse, so I stepped back. If you increase the dose and he is not well, you can always decrease, so I'd just go with my instinct. No one wants a kid to feel worse and we don't want our own kids to feel worse!

Hugs to you and thanks for sharing your story :) I wish you both speedy recovery and best wishes :)

Post Edited (Simela1) : 5/3/2015 11:28:42 PM (GMT-6)

Posted 5/4/2015 4:57 AM (GMT 0)
LCM:

I will be missing you if you decide to leave the site :( But I understand. I don't post every day and some days I post more than others.

I think you are doing a very good job. You are following doctor's orders. If you are not happy with your doc's protocol you can ask him to switch the abx for something else. Maybe RImfapin and something else instead of the doxi would help your son. Talk to LymePickle--he knows the drugs well. Also, Dr. Horowitz has a couple of excellent videos on youtube that you can learn about how he changes protocols. I think Dr. H says if his patient doesn't see improvement in a month or two he tries other abx.

We are here to encourage each other and give opinions. Even doctors do not know what works. What works for one person may not work for another and also drug resistance and bacteria changing forms make things difficult for the LLMDs. They try to help us all but no protocol is a one size fits all.

If you need a shoulder to cry on we are here for you. I know you are doing your best. You change your son's diet. You feed him healthy foods. You take him to not one but two LLMDs--what more can you do?

BTW, I took my son's tablet away because he was having some minor tics from playing games--they weren't even video games. I know this is a very difficult thing for you to accomplish with a 16 yr old, but the computer might be a bigger problem than you realize. My son is playing piano now and that keeps him busy. He doesn't even asks where his tablet is anymore. I hid it so well, I can't even remember where I hid it. I let him play on my laptop but I do try to minimize that as well, because it definitely does something to him--he is very nervous and very irritable after he uses electronics for 2 hours plus. I don't mean to add to your burden, my heart goes to you, but maybe if you can limit his time on the computer he will improve. I don't know why the electronics affect him and not my other children, but they do, and I am trying to minimize EMF toxicity, hoping that he will improve more if electronics are limited. So, it's just a suggestion based on my experience. It may be worth a try. I am not as good as you with the diet stuff. I am struggling with it because they don't want to listen and husband is doing the grocery shopping and he doesn't listen to me. He is still buying things they should not have, so I am having a problem that could be avoided if the husband would just listen a little.

All I want is for you and your son and family to be well. We do not have an easy job. I feel like a nurse in this house! All we can do is love them and help them get through this. It is hard for me too and I do reach some low points, but we are all better and that is what keeps me going--giving up is not an option. They MUST get well. And they will... If not with abx, with herbs. Son started Bactrim and will soon start Amox. If that doesn't work, we will give another try to herbs. Here is a great video about Cowden protocol with a lot of info: https://www.youtube.com/watch?v=B7FrCKNR_m0

I hope you see this :)

Hugs and blessings

Post Edited (Simela1) : 5/3/2015 11:25:44 PM (GMT-6)

Posted 5/4/2015 1:39 PM (GMT 0)
Thanks Simela, as always, you are WONDERFUL!!!!!!!

Hang in there, hard to get through the days, I know...
Posted 5/4/2015 4:37 PM (GMT 0)
Hi Moms - Just checking in and noticed the moms had gathered.

I had some brief over-rejoicing about 6 weeks ago when my son had a really good week. Ever since things have sort of tanked. We were doing herbs (Chronic Tonic) and 3 antibiotics but I noticed his tongue was getting really weird looking and decided to stop the antibiotics without consulting LLMD, an antibiotic-only kinda doc. I am suspect if his progress has slipped because of stopping the antibiotics, but it just seems like it was too long and too many antibiotics.

We just tried to sit and do 20 minutes of school work before he had to quit because of gastro-intestinal upset. We get so little done in terms of education. It has only been one wasted school year so far for us, but I feel so concerned about how he will catch up without repeating which he firmly does not want to do.

Anyway, your posts give me a sense of sanity that I am not the only one so frustrated. They also give me a sense that I need to toughen up as my time frame for dealing with all of this is so brief compared to many of you. I am a very infrequent poster partially because my head spins with all of the knowledge that others have and I feel like I deserve an F on the subject matter . . .AND as many websites and books as I read I will never be able to talk-the-Lyme-talk as well as others.

I just wanted those of you thinking of leaving to know that you have made a difference in my day and perhaps you could keep a casual eye on the board and post as you see fit.

If anyone of you could recommend an LLND in the Easter Pennsylvania or NJ region, I think I could use some re-direction and a new start.
Posted 5/4/2015 6:18 PM (GMT 0)
lymegreenson, if you activate your email (go to "my profile" and ok email), I can send you names. If you would like to email me, mine is activated, just look under "members" and I can send you info I have...
Posted 5/5/2015 2:28 AM (GMT 0)
Lymegreen

Neither of us got the knowledge overnight. I've dealt with this myself 6 years ago and used to post back then, but I had 3 children in the meantime and forgot my password so I had to start over. So I've learned a lot back then and still learning lol
I hope one day it will be behind us and I can read more fun stuff lol

I do want to caution you about abx and ct. Ct has Teasel in it and I don't remember which LLmD talks about this--I know it was a video on youtube and he says NOT to uses Teasel with abx. I don't remember why. Sorry. How old is your son? That llmd did use it and he ran into problems. Also some herbs increase the action of the abx and since he already takes 3 abx, I am not sure you want to add more to them--I would not. The herbs kill bacteria too, and that means that it kills the good bacteria as well. Candida and yeast will become more of an issue unless he uses more probiotics. What abx is he doing? I am still learning too. I am not an expert by all means but if you combine lots of herbs with lots of abx, you need an llmd that uses both.

It is fine to give his body a rest from abx once in a while and many docs do this. Since he was on 3 abx and not just one, it's unlikely that he will develop resistence. This is my undertanding from what I've been reading and listening from the LLMDs.

Also the St John's wort has some warnings on drug interraction. I am not saying not to use herbs. All I'm saying is that certain herbs can't be an should not be used while on abx.

I hope this may help you in some way :)

Post Edited (Simela1) : 5/4/2015 9:36:03 PM (GMT-6)

Posted 5/5/2015 2:31 PM (GMT 0)
Hi Simela1 - Thanks for the information and support. Lovemychildren (thanks LMC!) sent some doc names and I scheduled an appointment for one of them for next week. I will definitely mention the herbs to her. From what the office said, she takes a combined antibiotic/herbal approach.

He is on several probiotic including saccharomyces boulardii, which is supposed to be very good. The antibiotics that I stopped a couple of weeks ago were tindamax,minocycline, and rifampin. He came down with something viral about 3 days later that gave him a high fever 3 days later and lasted 5 days. So I am not sure if this could have caused his body to be so fatigued and perhaps having a tougher time recovering or if it is a lyme/lack of antibiotics issue, or a combination of the two.

I am sorry you have to be back here, but glad, all the same, that we have you here! Have a great day.
Posted 5/5/2015 3:07 PM (GMT 0)
You are welcome! I was going to use the Teasel with abx for my son and then I found out I can't :( My son deals with pain still. I am not sure it is a virus or a die off you son is dealing with. It's a bit late in the year for a virus. my kids had these episodes I used to think they where dealing with a virus, but looking back I am not sure. My daughter (5) had fever and slept almost 2 day straight a few weeks ago.

She is home with me and no one in the house had a virus. Where would she get a virus from? How old is your son? Does he go to school where he can catch a virus? These abx are pretty strong. Mino kills several kinds of bacteria on its own and than you have 2 more. I would increase detox to see if it helps. My son (10) is on Bactrim and I will start the amox in a few days. He was on amox for a month in December and it seemed that a virus hit him but again, looking back I don't think it was a virus. I think it was a Lyme herx. If your son is old enough to eat sourkraut this is the best probiotic. I make my own and my kids don't like it but when they have a bad GI problem, my 9 and 10 yr old ask for it and get a spoonful. Probiotics take longer to fix GI if a problem is already there. Fermented vegetables fix GI much more efficiently because they don't replenish just one or 2 strains of good bacteria lost and good stomach acid--they replenish all of the good stuff.
It's hard but all we can do is keep going!
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