I am getting unbelievably depressed about our situation. I am desparate for any and all ideas.

I promise, I will ask my llmd about all before putting any into action.

My little guy, JC, has late neuro lyme. Presented with lots of cognitive decline/developmental delay.

Since treatment, he has now also become emotionally unstable.

Based on your experiences, what can I be doing to help him? With his symptoms/lifestyle/diet/nutrition?

I really want his life to be better for him and I don't know what to do.

He is on IV rocephin. (Amazing total recovery for about 36 hrs on day 4. That disappeared)

HORRIBLE herx week 3 with scary psych symptoms. Week 4 was "rainbow after storm" with some improvement in all neuro/mood symptoms.

Weeks 5 and 6 steady cognitive/mood slide downhill.

LLmd is adding zithromax to the mix starting today. If he isn't better after a month JC will be going to Dr. F for psychotropics, too.

Did lots of searches but would dearly love more info.

Anything I can I do to make him feel more comfortable/calm?

He often has horrrible nightmares that he can't wake up from. Says that his brain is shaking. During the day, he often gets very upset about minor events.Sometimes
frantic OCD about minutia.

Never mind chronic problems thinking and getting his sentences out.

All this stuff waxes and wanes. Sometimes he seems "almost" normal and happy.

The whole thing is very overwhelming and confusing.

I don't know how much he will be able to go to school; they can make accomodations for cognitive problems but not psych. He's so lonely and isolated.

Right now I am giving him:

1)1 tsp. children's primadophilus @ day

2)multivitamin

3)EFA's for kids/neuro

4)pediasure;(he's underweight and anemic)

5)bi-weekly cbc,sed, liver and one other lab (my brain won't let me remember right now)

6)monthly abdominal/ gallbladder scan

7)"trying" to keep him away from sugary diet
(am worried about yeast)

8)as much love, tlc and amusement as I can
manage

I would really appreciate any insights or suggestions.

Thanks in advance,
andie

If he is underweight AND has neurological stuff, good quality fats are very important. More than just the EFA supplement. Cholesterol is actually required to make the myelin sheath for the nerves.

In this case, organic butter, organic eggs, cream, good nuts (not peanuts) would be important. This, of couse is only if he has no allergies or other reactions. You could make him shakes to make them appealing. Pour cream on his cereal, anyway you can get them in. Clean meats, naturally raised, with the fat, is also good.

Enough quality protein is also important.

You could try Epsom salt baths. That would allow him to absorb magnesium, which is also important for the nervous sytem, and is often low in Lymies. If its hot, let him play in a tepid bath with the Epsom salts in it. Before bed can help with sleep.

Is the probiotic taken multiple times, or just once a day. More often is best, to help the bacteria establish well in the gut.

Anyone on rocephin MUST take Actigall to prevent the formation of gallstones, and eat a low fat diet. Rocephin is notorious for causing people to lose their gallbladders, because it builds up "sludge" that eventually turns into stones.

As Riversinger said, though, fatty acids are vital to relieving neuro symptoms. You can get those from flaxseed oil, fish oil, primrose oil, lecithin, and phosphatidylcholine. Also, add on lots of vitamins, especially the B vitamins, and chelated minerals.

I am sorry for what you and your son are going through...my heart breaks fro you both also.

Try doing a search under Mo one of our members here, she went through alot with her son, you will get alot of good info.

I am so sorry for what you are going thru. i can't put into words how sad it makes me feel.

I can't concentrate well but i don't think you mentioned your son's age? My congenital lyme kids are 9 and 11. Your son sounds like a combination of my two kids.

I wish i had an answer for you, I don't - just wanted to let you know you aren't alone. I give my kids hot epsom salt/hydrogen peroxide baths when they are feeling really crummy - they say it helps alot. And drinking alot of water - I don't know what else because I'm kinda going thru the same thing.

This is what we are doing: 2 -50mg Zoloft am and pm, to help with the OCD; 2 - .25mg Risperdal pm (to help with the nightmares); Valium for emergency use in case of uncontolled anxiety..(We have gone from 3-4 pills per day as a preventative to only a half pill to get thru first week of school.

No one wants a psychiatrist if not necessary but we were dealing with suicidal depression. I will also say our llpsych is a gift from God..She helped us even when my daughter wasn't a patient.

We are also on our second llmd and both have been helpful. Our current one is very experienced with kids and well respected by the family.

I think you have to listen to your instincts.We have had numerous bad experinces with Drs and drugs. It is not a written in stone for everyone answer. You will need to work to find some things that work and even then they may stop working..

I have personally without previous drs ok slowly withdrawn effexor, since it was killing her. I know someone that it works for. The problem is no one knows for sure what works for kids regarding psych drugs..

My daughter also has Bartonella which they think is causing the psych problems and OCD. She is taking IV Doxy.

So sorry for what you are going through. I can't give any more advice than you have, but wish you luck with the treatment program.

I have been following your posts with interest. And I think, boy, would I be exhausted! Know that you are not alone.

1) Lyme hits in cycles there is going to be a week every month where its bad real bad just pretty much prepare and accept it.

2) As lame as this sounds keep an eye on the moon when it's full it going to be a rough few days as well. Don't know why exactly but it just is.

3) I would strongly suggest you find a good ND in your area in order to help shore up Immune support IV rocephin is quite powerful and will put some very serious strain on your liver and gallbladder. He should be on some liver support.

4) He is underweight mal absorption of needed nutrients can be a serious problem once again getting to support more then a multivitamin (many of them simply pass though the system and are expelled in the urine giving little to no value) will likely help put on some weight and ever back to a normal weight level.

5) As unpopular as it may be I this forum keep in mind that antibiotics are only one means of attacking Lyme and that using several modalities at once depending on your situation would be a wise course of action.

Riversinger,Liz and Wyatt: All your nutrition ideas and advice were excellant!

Thank you for reminding me that neuro lyme has a long recovery time and that everything happening to JC is unfortunately part of the package.(still hate it, tho)

I think it must still be too early for his
flares to be more predictable. Lots of rapid cycling going on right now. I'm keeping a journal.

JC is only 6 and went "down" to a size 4 last year. He is so pale and undernourished; there is some serious malabsorption going on there.

I am going to step up all the nutrients and probiotics. He can't swallow pills so I love the idea about the nutritional shake. Maybe unsweetened Silk.?

"Ultimate Meal"s incredibly nutritious but tastes a bit like fermented Yak doody..lol. I'll figure something out.

BTW, I followed up on the Actigall;he'll need a scrpt from the llmd...have to find out if its ok for him.

I am also stumped on the whole rocephin/low fat thing. Need more ideas.

I also wish I could get more magnesium into him. It's counterindicated with zithromax.

Maybe the idea about the Epsom baths is the best if its a just a "gastric" no-no?

Anybody know?

Will also follow up with our ND on all your other super suggestions. Thank you!!

Beverly: You are always so thoughtful and ready with kind words of support. I want you to know how much they mean to me and how Ithink of you and hope you are doing ok yourself.

Lou: Thank you for the #of the Lyme counseling !!I am going to check that out. They will likely be a great resource for services to help me sort out options for JC.

In this unbelievably infested area of CT, support groups and counselors are springing up all over the place.

Isn't it unconscionable there are so few llmds? The ducks are really pushing back hard around here. Its gotten very nasty for the llmds and patients.

In one town, 56% of families are reporting Lyme! In another, an epidemic of "autism" in the school.

aaronkatie: I'm go out on a limb here and assume you're katie? I am so sorry you have 2 kids with this. Isn't the whole diagnosis,treatment, symptoms, etc horrid and surreal? Do you ever feel like you've stepped into the twilight zone?

I always intuitively trusted my decisions re: my kids but this is uncharted territory. I am so grateful people like you are in this group...though so sad you have to be here.

Good tip about the water; I keep forgetting to do that!! Thanks for the reminder!

How are your boys doing right now? Hugs there and to you too.

lymemom: Wow. You have been thru a lot. I can't imagine. You have my warmest regards and concern. I hope you are both ok.

I know, from personal experience with several people close to me that psych meds are the only way out. They do save lives.

How is your daughter doing now? It is great she was able to go to school; how is that going?

I am grateful that JC will be seeing a great psychllmd, Dr. F. At least I will know he will be in the best possible hands.

I also nodded when I saw your comment about bartonella. Lots of clues there. We retest for ALL co-infections on Wed.

JC can't take doxy (too little) but I think the zithromax might help? Does anyone know about that?

Lymiecanuck: You always have something nice to say and your name always makes me smile
thanks for being here!

KGG: My heart goes out to you for your 17 yr. old son. Again, like lymemom, I can't imagine. How is he doing? How are You?!

At least JC is little and if need be I can control most of the in put: ie; Spongebob.

Again, everyone, all your posts are so very helpfuland appreciated. I know just putting these into action is going to help make his little life better.

Thank you from the bottom of my heart.

love,
andie

I think you just have to be sure that it is taken at least two hours away from the meds, because it inhibits absorption. Or is there something I don't know?

For shakes, I sometimes add egg white protein powder or whey protein to thicken and add nutrients. Again, ask the doc, but nut butters make a tasty addition as well. Frozen fruit can make it kind of like a milkshake.

Strawberries and blueberries aren't too high in sugars. If it needs sweetening, I use stevia. If he can tolerate dairy, yogurt or unsweetend kefir can make a good base.

I sure am sorry your little guy is struggling. When I had a serious flair last October, I put together a shake that I drink everyday that not only is nutritious and helped me put my weight back on, but my kids always want to drink it too because it tastes so good. Here's what I do in the morning. In a blender mix:
2 to 3 bananas
1/2 cup frozen rasberries
Scoop of quality protein powder (I like rice protein)
1 tablespoon of liquid multi (I use Source Of Life)
1 tablespoon High Lignan flax seed oil
3 tablespoons Benefiber (Works wonders for regulartity, if you know what I mean)
1/2 the blender with Rice Dream rice milk
Other 1/2 with distilled water

Tastes great! It makes about 3 or 4 glasses a day. I keep it in the fridge. Not only is it loaded with quality nutrition and calories. It tastes great and has no additives or preservatives. I put NO sweetener in it. Like I said, my kids love it even my mother in law liked it!

Good luck and we'll be praying for you.

Started ozone therapy July 11th (at home, easy to do, and cheap) and within 2 weeks she had her life back. Now she's completed her first week of school, doing fine. Nothing was working before that. It's really a miracle.

It's not a cure, it's a way of getting a powerful form of oxygen inside the body, where it makes a hostile environment for pathogens and they die. For a cure you have to get more aggressive. We have just ordered a rife and will be working with that to finish off the little ******s. The rifers are the only *group* of people I see posting who are actually getting well.

It's a smart and wily bug.

email me at [email protected] if you want to know more about ozone.

I do hope that whatever method you choose will help.

Btw, my kids are Aaron and Kaitlin thats where I got aaronkatie. And yes this does seem like too much, is too much very often until i look in their faces. Then I know i have to fight for them - hardest fight of our lives, huh?

Riversinger,Dave, Skyking, Orion and Aaronkatie: Loved all your ideas and support!!

I am looking into everything. From experience, I've found using multiple modalities builds the strongest foundation for any lasting recovery.

Think you are probably right about the magnesuim; I'll give him his 2 zith doses at lunch and dinner and his mag in am and before bed.

What type of mag is best? I was doing a liquid cal/mag but heard it may not be ideal re: absorption. Any ideas?

Am busy designing a multifaceted recovery plan. What do you think?

AM:
Lite breakfast(egg or low carb grain w/nuts and fruit)
and
Silk Shake:
*1 tsp rice protein powder
*1 tsp "complete" with aminos powder
*1 tsp Learning Factors powder (promotes brain, gastrointestinal and immune system health)
*1 tsp Learning Factors EFAs(all the good stuff in that)
*1 tsp Primadophilous for children
*Silk flavor of the day
*Fruit(s): eg; berry, banana, pineapple

Midday:
Lunch
zithromax
YoBaby w/tsp of Primadophilus

Afternoon:
IV Rocephin
Snack:
Liquid multi w/Fruit and YoBaby w/ Prim..
or
Shake

PM:
Dinner
zithromax

Epsom Bath: He loves bathtime!

Bedtime: mag

Still looking into actigall..

Hmmm?

Skyking and Orion: I am going to check out your ideas. I have a neighbor, who has been off all abx for 3 years! (after being sick for 6?) who swears by the methods you suggest.

She said she absolutely needed the abx to get her to a certain point but the other things took her the rest of the way.

Please don't feel you need to qualify your posts regarding what has helped you with me; I am a search-aholic and have my own mind.

I appreciate any info and respect differences of opinion. Even those of the WELL-MEANING, albeit misinformed docs.

Hey, we're ALL misinformed! Otherwise we wouldn't be here or human. That's why we need each other.

Thanks again and love to all,
andie

Unless I am wrong about what Yobaby is - the primadopholis(sp?) should be taken atleast 2 hours away from the abx - someone correct me if that is wrong because i didn't read the whole post.

But in my understanding - the abx kills the good bacteria so would it not kill the primadophalis(sp?)?