Can you guys help me along here?

[kferricks]

We see our LLMD on Wed for the first time, and I'm just terrified after talking to a few ppl and then reading here. My child is Pandas/Lyme. She has been on Biaxin since the middle of last month and the last two weeks she has seemed to be fighting the ocd a little but then I realized it was just morphing into other ocd behaviors.

Anyways, is it true that my childs behaviors are going to get much worse before they get better? Does this happen to everyone? Does it last a long time?

I was reading the other post and would like to know how I help her drainage? Is there anything I can do to help prevent things getting worse?

 

I just don't know if I can deal with it getting worse. My nerves are shot, I'm just getting over shingles from my nerves, and I'm just a basketcase.

 

I have been doing epsom salt baths and giving her culterelle (learned on here), but I really do not know how much I should be giving her. I've only been giving her one capsule a day in her juice, and about 2cups of epsom in her bath.

 

Please help me here...

[Suzan]

We give bentonite clay mixed in juice every day. I'm looking into Chlorella but have not tried it yet.

 

We had herxing and worsening of symptoms. However, the overall experience has been one of improvement. There have been one or two weeks at at time of feeling really bad but then it opens up with an improvement. Then something else will flair up but it's not as bad since there is improvement elsewhere.

 

Just getting my brain back in the begining was enough to know I could handle it. My dd9 was the same way. She had a very quick improvement on her emotional state so it helped us get through some of the bad physical times. Now, 5 months into treatment, she is going through another hard time. But it has not been constant. I guess there is no way to know how your dd will respond. I just hope that your experience is similar to ours where you get some good improvement which will help you deal with it all.

 

My dd8 has not had much improvement but her sympotms are so different than many others here with seizures and heart abnormalities. I don't know if that makes her healing look different too. She has food related ODC and she seems adhd, and high functioning spectrum disorder at times.

 

Susan

[kferricks]

Thank you Suzan. I will add the bentonite clay to my list.

[momaine]

My LLMD suggested Glutathione for my dd as a way to help with detox.

 

The first month of Lyme treatment my dd began to improve (ocd wise) and I thought maybe we would be one of those lucky ones that didn't suffer through a terrible herx. But alas, it wasn't meant to me. Since then, she has really had some difficulties that I feel are from not detoxing fast enough.

 

So anything you can do to help with detox should be helpful. Unfortunately, showering is one of my dd's difficult things and so she doesn't take as many hot epsom salt showers as I wish she did,but every time she does she gets a die off rash, which means its working.

 

I find it difficult at times to decide how much better or worse she is over all, esp. when one thing is worse. Right now she can't sleep at night and being over tired doesn't help anything for either of us.

 

Best of luck. Hope you are one of the lucky ones.

[Suzan]

I forgot a few other things that have helped us through the hard times, a heating pad and a portable Far infrared sauna. The sauna helps with detox and also helps work through a herx. The heating pad just feels good and our LLMD recommended it to get through any painful herxing. I just noticed tonight that I don't feel like I need to sit with the heating pad every evening any more. I got in the sauna today and sweated a lot and I feel better already.

 

Susan

[LNN]

We see our LLMD on Wed for the first time, and I'm just terrified after talking to a few ppl and then reading here. My child is Pandas/Lyme. She has been on Biaxin since the middle of last month and the last two weeks she has seemed to be fighting the ocd a little but then I realized it was just morphing into other ocd behaviors.

Anyways, is it true that my childs behaviors are going to get much worse before they get better? Does this happen to everyone? Does it last a long time?

I was reading the other post and would like to know how I help her drainage? Is there anything I can do to help prevent things getting worse?

 

I just don't know if I can deal with it getting worse. My nerves are shot, I'm just getting over shingles from my nerves, and I'm just a basketcase.

 

I have been doing epsom salt baths and giving her culterelle (learned on here), but I really do not know how much I should be giving her. I've only been giving her one capsule a day in her juice, and about 2cups of epsom in her bath.

 

Please help me here...

 

I think the first thing to realize is that if your child has a lyme diagnosis, then you've already been dealing with lyme, even if you haven't been calling it that. Second, there's no rule that says everyone has to get worse before better. I think mentally it just helps to prepare yourself for a bumpy road. But by coming from the Pandas world, it's nothing you haven't already dealt with.

 

It took me some time before I had the energy to educate myself about lyme. It's like getting the wind knocked out of you. But you recover, and you move forward. What choice do you have?

 

There are things you can learn about detox and drainage and supporting the body and the spirit. But your answers may be a little different than anyone elses. How much probiotics depends on diet, meds, and symptoms. It's highly individual IMO. You're looking for well formed stools passed on a daily basis. Your LLMD may have suggestions for what brand, how much...just make sure they're taken 2 hrs away from antibiotics. Our LLMD prefers they get taken at bedtime so they can sit in the gut overnight. But there's nothing set in stone.

 

I think the thing about being on the lyme path is that, if this is what your child is fighting, then you see progress. Sometimes that progress gets wiped away, but you get to see the parts of your child you've been fighting for and that keeps you going. It's a complicated disease. But you end up rising to the occasion. It's different than Pandas, but no worse IMO.

[ptcgirl]

I can relate so much to your situation. In February we were faced with the same thing. We had good reason to believe that our pandas child had Lyme but hadn't visited dr j yet for formal diagnosis. I was so afraid that things would get worse due to herxing. We kept putting off treatment and our appt for this reason. Pandas is bad enough. Didn't think we could handle anything more. But in early March we decided to bite the bullet and see dr j. Dd11 has Lyme with babeisa and bartonella very clearly. Was put on tindamax, enula, and rifampin in addition to augmentin and zithromax which she was already taking. Our worst fears were realized. She herxed and herxed. It made a mild situation back into a living nightmare in the beginning. She was bed ridden, in a lot of pain, tremendous OCD, brain fogged, etc. We persisted and things are better now. OCD is manageable and pain much lessened. It took about a month to start seeing improvement. Those first few weeks were truly awful and I hope that you don't experience it. We didn't detox. Didn't know about it then. I wish we had. The only thing we did was ibuprofen for pain and otherwise she pretty much stayed in bed for a month. We homeschool so at least we didn't have to worry about getting her to school each day. That would have been impossible for her.

 

All of this being said, I'm glad we did it. She IS getting better. I'm hopeful that we can see lasting improvement and get all of this crud out of her body. As a parent it so hard to see our children hurt, but I'm holding on to the possibility that she can regain her childhood and be happy again. Good luck!

[kferricks]

Thanks you guys for taking the time to respond. Everything I read helps just a little more. I have been reading, talking and absorbing every thing I can because I know the more informed I am the better for my family. Do the lyme docs usually tell you about the probiotics/cleansing etc.? Do they usally tell you how much you should be giving and what helps? LLM you are right, and I have read many posts from you and just wanted to tell you that I like your straight out approach to ppl. We just keep going because we do not have any other choice, if we want our kids back. PTCgirl, was your child already experiencing pain before hand? Suzan, momain, thank you for the suggestions, I have them written down and will be reading up on them.

 

Jodi

[EmersonAilidh]

We see our LLMD on Wed for the first time, and I'm just terrified after talking to a few ppl and then reading here. My child is Pandas/Lyme. She has been on Biaxin since the middle of last month and the last two weeks she has seemed to be fighting the ocd a little but then I realized it was just morphing into other ocd behaviors.

Anyways, is it true that my childs behaviors are going to get much worse before they get better? Does this happen to everyone? Does it last a long time?

I was reading the other post and would like to know how I help her drainage? Is there anything I can do to help prevent things getting worse?

 

I just don't know if I can deal with it getting worse. My nerves are shot, I'm just getting over shingles from my nerves, and I'm just a basketcase.

 

I have been doing epsom salt baths and giving her culterelle (learned on here), but I really do not know how much I should be giving her. I've only been giving her one capsule a day in her juice, and about 2cups of epsom in her bath.

 

Please help me here...

 

Hi! Herxing is different for everyone so I can't really tell you one way or the other how it'll be, if it even happens, for you guys but I can tell you how it happened for me.

 

"Anyways, is it true that my childs behaviors are going to get much worse before they get better?"

One of the most common herxing symptoms is fatigue, & in all honesty mine was so bad that I could hardly think enough to act on my OCD. I'm Narcoleptic so my fatigue was worse than most, but I haven't heard much about OCD getting worse in a herx. The two ways I see people most often describe herxing are that it exacerbates the problems you already have or gives you "flu-like symptoms". For me it was more flu-like symptoms than anything else. It is most likely true that they will get worse before they get better, but you'll just have to wait & see to find out what exactly that implies.

 

"Does this happen to everyone?"

Herxing is a die-off reaction. When your body's full of bacteria & you introduce a bunch of antibiotics out of nowhere to kill them, the little buggers start flooding your bloodstream all at once, releasing toxins as they go. It's all too easy to forget when you're in the middle of a herx, but feeling worse actually means you're getting better!!! MOST people have noticeable herxes, but not 100%. It also depends on what all you're starting off on, but it's safer to prepare for a herx than to hope you don't have to deal with it.

 

"Does it last a long time?"

That also really depends on what exactly she's being prescribed & how resilient her body is. I try to be as honest as possible on here so I can admit that for me, the one week mark was my lowpoint. Those first seven days were Hellish (keeping in mind that my doctor likes to hit infections hard & fast. No easing into it for me) but it started looking up after that. I'd say it took about two to three weeks before the herx symptoms were really abating, & by the time I added Omnicef in the fifth week they were totally gone. I didn't feel perfect by any means, but once you've felt one you can tell a herx from your regular symptoms.

 

Is there anything I can do to help prevent things getting worse?

Skipped the drainage one cos I don't know anything about that. Milk thistle made a huge difference in herxing for me. I also have Spirulina tablets that I've been saving for the herx I get to start this week, hooray! But I can't attest to their effectiveness just yet. Epsom salt baths were a lifesaver & a heated blanket was a must-have for me. Some people also swear by teas like Kombucha, organic Peppermint, & Dandelion root, but I didn't drink them as often as I should have so I can't say much. Also, if you can get your hand on a "Comfort Bag", it's like a portable heating pad that didn't leave my side the whole time, haha.

[kferricks]

Thanks Emerson, just one more question. Did your LLMD tell you what you should use? Do they usually say that you should detox? We see ours on Wednesday, and I know I'll find out then. The Biaxin that she has been on has really helped. I see that her eyes are rarely dialated and her mood is much better. I even see her slightly fighting the OCD in some areas, but then I see some of them just morph into new ones.

[pathfinder]

It has been about 4weeks since ds started rifampin (on top of agumentin)and just getting off the worst herx period. ( in my son's case depression/weeping every night) I was told by 2 doctors that some vitamins help herxing so my ds has been on following vitamins for last 3 days

Vitamin B6/B12

CoQ10

Magnesium

Mega Vitamin C

and all herxing symptoms almost went away. ( either it was time for herxing symptoms to go away or are vitamins helping with herx ?, I do not know)

I was ready to give up on rifampin but we are going to stay on and fight till the end.

[ptcgirl]

PTCgirl, was your child already experiencing pain before hand? Suzan, momain, thank you for the suggestions, I have them written down and will be reading up on them.

 

Jodi

 

No, she really didn't have ANY pain before the tindamax, rifampin, and enula. While herxing she had very significant pain in the chest cavity, ankles, legs, head, throat, and wrists. It was weird to me since she is a child with a high threshold fornpain and only cries when she breaks a bone. This herxingpain was far worse than any other pain she's ever experienced, even her tonsillectomy. Again, I am happy that we did it. She is MUCH better right now. Thank God!!

[laure]

Wow, this post is awesome, thanks so much all for giving so much info! I also posted today, "OCD getting worse by the week", but this post has so many examples, hopefully we will get to the end like some of you have. Glad to have some cyber-support!