Ok Lyme Mom's, I need advice........

[Dedee]

I think I may have really messed up here. I'll try not to make this too long. You may all recall that my dd 9 was diagnosed in Nov 2011 with PANS. Initially thought it was strep and Myco p induced but last year she tested positive for lyme and her LLMD believes she also has bartonella. She has been on various antibiotics and combo antibiotics and we have gone through some good times and some not good times. The last 6 months have been very difficult. She had been on Septra for a while and was absolutely a horror until we realized (by genetic testing), that she can not take sulfa drugs. So we switched to Zith / Rifampin combo which did take away some of the craziness but still things are not where they need to be. So I have really worked on her genetics. We have her 23andme results back and I have studied like my life (or hers) depends on it. Working diligently on methylation, immune support, gut support. I have spent a fortune on supplements (the right ones for her SNP's). Going slowly to avoid detox. Feel like I am doing everything I possibly can but still she is doing terrible.

 

So yesterday I was reading and I came across something about Lyme and Grapefruit Seed extract. It said that Grapefruit Seed Extract works as a cyst buster for lyme and that some people use that as a treatment for lyme. Well, I give my daughter Grapefruit seed extract to help with yeast issues. She also takes nystatin three times a day and diflucan once a week. I have been giving her the GSE for quite a while (can't remember exactly how long)just as an extra precaution for yeast. So I'm wondering if the GSE is causing her to herx because of the cyst busting?? She takes it 3 times a day and I'm sure she has been on it at least 3 months if not longer. Since she has been on it so long would the herx have worn off after a while if that were the problem? Has anyone else heard of this? I would appreciate advice on this. I am getting so desperate in regards to her behaviour that I decided if she wasn't better by the end of the summer I was going to start her on an SSRI. It is really starting to affect the family and my marriage. What do you all think?

 

Dedee

[rowingmom]

Even after 2 years of combo abx treatment for lyme/bart, including tindamax (another cyst buster), we saw a huge uptick (from practically zero) in PANS symptoms (age regressive behariour, ADD, urinary frequency and motor/vocal ticcing - the likes of which I hadn't seen for 2 years) when the LLMD suggested we add GSE (1 drop/day) on DD's toothbrush for dental plaque - and we were at a point with pulsed tindamax that the herx reactions from each pulse were no longer even significant.

 

DD was on 1 drop/day of GSE for a week before I realized it was the GSE causing her flare. What it was killing off, I have no idea. It could have been yeast as we never used nystatin or diflucan along with abx, but did use plenty of garlic, curcumin, oil of oregano, probiotics and fermented vegetables. We had discontinued curcumin at that point, but after adding that back in along with phosphatidyl choline and discontinuing the GSE we saw things calm down, but it took almost a month. It could have been a lyme or bartonella die-off as well, who knows.

 

I assumed what we saw with the GSE was a herx reaction. When we initially started tindamax, we used it continuously. With no pulsed break, I found that herx symptoms just ramped and ramped with no resolution. It wasn't until we started pulsing and her body had a chance to really detox, that we saw the herx/symptom resolution cycle.

 

Since weaning off of abx 15 April, the only thing that has caused a flare for her has been the readdition of A-Bart, which we ran short of for a couple of weeks. DD is currently on maximum dosages of the Buhner bartonella protocol, and we are ramping up the houttuynia (at 1/2 max dosage for that at the moment). The only herx reactions I see from houttuynia are emotional, and they occurr exactly 3 days after a dosage increase - interesting.

 

I really believe that GSE and A-Bart, which are both causing herx reactions/flares for DD, need to be reinstated into her protocols. I will be talking with the LLMD - I think pulsing may be the way to go with these two, just as it was with tindamax.

Edited June 12, 2013 by rowingmom

[LNN]

My son cannot tolerate tindamax, even pulsing (we last tried it in Jan). I don't know if that means he still has cysts, but he's been off abx for 2 months and is holding steady. I could go back and do more cyst busting, but why? He may always have lyme - it may be impossible to ever get rid of all of it. If he's finally goten to a truce with it, where his body can keep it in check, I've gotten to a point I'm ok with that. I need to let go of the desire to have him squeaky clean of all infection. If he regresses, yes, I'll absolutely put him back on abx in a heart beat. But for now, we're at a good place.

 

Twice in the past 6 months, I've tried things that set us back - tindamax and enhansa. I get responses assuring me it's a herx and to push through. That might be right (tho enhansa is an MAO-I and DS already has an inhibited MAO mutation, so I think that enhansa is just a bad fit for him). Maybe I'm doing the wrong thing by just stopping. But I'm so very tired, the family is so very tired, my son is so very tired, and we're so very broke...that I'm ok not rocking the boat again unless I need to.

 

So for the GSE, I'd stop it for a week or two and see what happens. If it's all good ans she stays good, I'd put the GSE in back of the cupboard. If she gets good and then slips, you'll know it's a herx.

[lismom]

My son had huge herxes from gse. It varied, I gave it off and on, I gave it continually for about 4 months. I was told it cyst busts well, but is not systemic, it doesn't get to the brain and tissues well. And it works well for yeast. I found that after the months of continual use I had to stop it. I could tell it was a build up of the toxins. My son doesn't detox that well. I waited 6 months and have just started tindamax. This does get the cysts in the tissues and brain. More herxing but going slow.

 

Rowingmom I can't believe you saw something from one drop! that's crazy we were on 250mgs at one point.

[rowingmom]

One drop on a toothbrush and all heck broke out the next day.

 

@LLM - we seem to be in the same spot. DD is still showing bartonella titers of 80 (LLMD says that's positive), but she is in such a good place now; age appropriate behaviour, excellent executive function, capable of handling frustration, no PANS symptoms to speak of except a few (!) motor tics. Bartonella pain and fatigue seem to be a thing of the past, even with intense exertion, as are the rest of the 20 odd symptoms she presented with in the beginning. She is pulling off A's in school with no help at all from me. But then I see posts like tpotter's, and what her poor son is going through at the moment, and wonder if I should just keep at the antibiotics until IT'S ALL GONE!

[Dedee]

Ok ladies....don't know why I hadn't read that before or I would have certainly stopped it immediately. We are absolutely no where near being able to stop antibiotics (so jealous of those who can). When my daughter was coming off of the septra we decided to stop all antibiotics for two weeks to get it all out of her system. She got sooo sick. She had terrible headaches and stomach problems. Her fatigue was awful and she was so pale with dark circles under her eyes. She kept complaining that her legs hurt and she couldn't breathe. I couldn't wait to start something back. I knew then the whole lyme thing was absolutely real. I feel terrible for doing this to her and not being more up on the supplement I was giving her. I just pray that stopping it really will help with symptoms. Keeping my fingers and toes crossed.

 

Dedee

[SSS]

On the bright side, think of all the cyst busting you did- that's good! Because it's not easy!

Maybe it was meant to go this way, and now you are meant to stop.

When the student's ready, the teacher appears, or something like that ;-)

[rowingmom]

The poor dear, I'm so sorry she's feeling so badly. We tried to discontinue abx a couple of times earlier in DD's treatment, but she too would relapse fairly quickly. We are at 2 months without abx now, and just keep seeing improvements in temperment and executive function, so here's keeping my fingers crossed.

 

Even though DD didn't test positive for babesia, we saw an immediate decrease in symptoms (including bart symptoms) when we started treating with malarone - the LLMD couldn't understand why after 1.5 years of fairly heavy treatment for bartonella we couldn't get rid of symptoms, so thought babs was lurking in the background. Perhaps DD had some type of protozoan infection that we had not tested for, but she really didn't have symptoms other than bartonella.

 

You mentioned difficulty breathing which is a typical babesia symptom - perhaps something to look into as well.

 

Don't feel badly, you are doing the best you can. Your daughter is very lucky to have a mom who is willing to go to great lengths to help her get better. Just run the supplements past the LLMD before you try them and chart, chart, chart. I know it's hard keeping track when you are throwing everything but the kitchen sink at these infections, but just try introducing one thing at a time.

[sf_mom]

I am wondering how long has she been on the Azitro/rifampin combo? It took about five months for things to really settle down for our younger son.

I agree you should probably consider Babesia due to difficulty breathing.

Is she better on the day she takes Diflucan? Diflucan is very good for treating lyme. We pulse 5 days on 9 days off. If she is better on that particular day maybe extend the number of days you are treating her with diflucan.

The couple things that have helped us the most in the last year: Treating entire family for yeast/ fungus, treating iodine deficiency as it helps to keep yeast/fungus under control, chelation for heavy metals, HD enzymes for pancreatic function and phenol breakdown. If pancreatic function is low the body has very little ability to absorb any supplementation. You would test for pancreatic function via a comprehensive stool analysis.

Chelation has been a miracle for our younger son. Prior to treating heavy metals he suffered from night waking, early waking, mood liability at times, chewing nails/shirt daily. On his days off from chelation those symptoms are mostly resolved. Best we've seen him since treating for Lyme et al.

Hoping our experience will give you some potential things to investigate with your Dr and bring DD to the next level of recovery.

Edited June 13, 2013 by SF Mom

[Dedee]

You all are correct about the babesia. I mentioned this to the LLMD when it was happening and she said the same thing. My daughter had the same symptoms when this all hit the fan in 2011. When she is on antibiotics she never complains of it but as soon as she is off it comes back immediately. She has been on the Zith / Rifampin combo about 3 months. We have tried this before when we were seeing another doctor and got the same kind of mediocre results. My faith in Zith for my daughter is not high. The rifampin does seem to really help with tics, but I'm going to ask for a change when I have my phone consult on Monday. I don't mean to be an instant gratification kind of person here, but OMG I am about to loose my mind here. After 3 PANS kids and dealing with PANS for 11 years in one capacity or another I consider myself pretty seasoned in handeling the ups and downs of this. HOWEVER, let me tell you, I am just about at my whits end dealing with my daughter. We have done IVIG twice, been on antibiotics for 2 1/2 years, treating methylation, treating genetics, been to PANDAS specialists, LLMD's, been through the CBT program at USF twice and still she is no where near acting like the 9 (almost 10) year old she is. Most of the time our house is constant stress and I AM TIRED OF IT! Something has to give somewhere. Ok, I feel better now. At least for a little while. Thank you all for your advice and support. Don't know what I would do without everyone here. You guys are the absolute best.

 

Dedee

[LNN]

D - trust me. It does get better. Sometimes I'd get so PO'd as the other old timers would get their kids off abx and dabble in that "normal" world we all used to live in. And I'd think "%#@*&! - when does it get to be my turn???? I've put up with this $#% just as long, spent at least as much money, logged at least as many miles traveling to the same docs, treated 4+ diseases, why do I get the "privilege" of having to dig deeper?" But if I had stopped at "pure Pandas" my kids would still have untreated lyme, pyroluria, and methylation issues that have far reaching impact on their lives. I'm not sure you're ever "done" with this stuff - it will be on my radar for years to come. But the journey you're on will give your daughter a life that wouldn't be possible if you didn't keep pushing for more. You're giving her an immeasurable gift.

 

Did you see this? http://pandasnetwork.org/2013/06/my-son-the-pandas-survivor/

From ticcer to valedictorian...

 

One way or another, we'll all get to the other side.

[rowingmom]

Zith/rifampin will do nothing for babesia. Towards the end of treatment DD11 was pulsing (get ready): tindamax, palquinel, malarone, minocycline and azithromycin. Previous to that she had done 1 year of biaxin/rifampin. We started out with bactrim, but she was allergic to it. Bactrim produced a huge herx-like reaction and then several days later allergic urticaria. An increase in liver enzymes as well.

[Dedee]

LLM, thanks so much for the words of encouragement. You are such a good friend. I know you are right. I am just road weary at the moment.

 

Rowingmom, I suspected as much regarding the antibiotics, but appreciate the confirmation. Thank you so much for all of your input. I value you experience and advice on these matters. All the Lyme parents here are very knowledgable and such a great resource. I truely don't know what I would do without you all.

 

With love and gratitude-

Dedee