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Update on my son - and a bit of hope

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Posted 5/3/2017 5:12 AM (GMT 0)
Hi everyone,

It's been a while since I posted and thought we might have some interesting info - and of course I have questions lol.

My son has been back to school since February. He misses 3/4 mornings a month. He turned 16 a week ago and got a skateboard and is able to skate 1/2-1 hour 4 days a week and has been doing push ups and sit ups 2-3 days a week! So energy is probably 80-85%? He used to run in track and he can not do that kind of cardio.

He has no more headaches, dizziness, stomach aches. He has gained 30 pounds -now 162 lbs!!

He has occasional shin pain, is unable to unclench his right hand first thing in the morning.

The worst remaining symptom is anxiety/OCD especially at bedtime. Germaphobic and hand washing and he still won't touch our sweet dog -his best friend.

I have to tell you his grades are amazing -nothing less than 95%!!! He is getting 100% on history and chemistry without studying. Didn't study for driving test and got 100%.

Now I'm not saying this to brag but I really really want those out there suffering with cognitive issues to not give up and keep going. I think his brain is better than before?! Last February he had constant migraines and couldn't read or watch a screen. Then even when the migraines eased up he couldn't do simple math or write a simple sentence.

I remember him coming to my bed and crying say he felt he was losing his brain.

He has been taking Japanese knotweed and gou teng since December and I think they have something to do with it (35 drops 2/day)- I am going to be gulping them down once I get him sorted. He is also taking houttuynia (20 drops 2/day)

The llnd is trying to wean him off antibiotics but I think we still have lots of treatment ahead of us. He is taking Azithromycin right now.

My son originally tested for elevated IgE -8400!!! And the llnd is now addressing this thinking there is mast cell activation. He has just prescribed cromolyn sodium, Zantac, Quercitin and Claritin for one month then reassess IgE.

I will continue with herbs, maybe try Chinese medicine -Greg Lee has four herbs for bartonella-white peony, buplerum, Angelica sinensis and ashwaghanda or the classical pearls. And probably re try rifampin

Sorry for the long post. Everybody please throw any advice for further treatment ideas.

And big hug to all !!
Posted 5/3/2017 6:25 AM (GMT 0)
Wow Momster -

What a great update! I am so glad he has made such progress. A LOT of work, no doubt.

As far as the physical activity, he might need quite a bit more time (maybe even a year) to recover his ability to perform at that same level again... but it's likely he will - he's still so young.

I'd say the OCD is just a neurotransmitter kind of thing - I became germaphobic when I first was infected and I can see patterns when I flare and when it gets really bad. It might take some exploration to figure out how to rebalance his NTs... And I'm not sure I have many suggestions just yet. A VERY healthy gut, consistent elimination and GI detoxing is extremely important, given the gut-brain connection thay finally proved w/ blood vessels connecting the two. And that might be next to impossible while he's on abx.

My neurologist suggests that most neuro issues are due to inflammation - so the JK is doing a great job - feel free to add in more anti-inflammatories (turmeric, etc.)

I'm glad he's also treating bart - shin pain is classic bart sx - I used to get it all the time before I started bart tx. Also - you might try the tinctures by Byron White or Beyond Balance.

Good luck - let us know how he's doing!

-p

Post Edited (Pirouette) : 5/4/2017 8:50:18 AM (GMT-6)

Posted 5/3/2017 6:32 AM (GMT 0)
Lymiemomster - Thanks for updating. Your son has improved a lot. You must be so happy with how he is doing.

Is his LLND weaning him off abx per your request?

What prompted the LLND to test for IgE in the first place?
Has he displayed symptoms of mast cell activation?

He definitely does need more treatment - whether it be abx or herbal...as he still has symptoms.

Interesting you mention the clenched hand in the morning. I also had that...I used my other hand to unclench my right hand (and mine really hurt as well)
Posted 5/3/2017 1:42 PM (GMT 0)
Awesome update, gives many of us hope.

The clenched hand thing is so weird. I'll catch myself doing it and force myself to lay my hands flat. Also, I do a lot of weird leg movements, not twitching (although I do that, too) but a gentle jerking.

Keep us updated 😊 I see you smiling from here!
Posted 5/3/2017 2:29 PM (GMT 0)
That's great news! He will get stronger - slow and steady. Is he treating for Pandas too since OCD is a part of that? I'm going to write down the herbs you are using because it seems DS is still have brain issues as his grades are lagging but he does miss a lot of school and it's so hard to catch up. He's very distractable.

Our DS is at the same point physically - he will say 80-85% as well. He's sick 1 day a week too, always a school day but is now playing varsity lax as a freshman. He started weight training coincidentally at the same time as treatment 1.5 years ago and I think that helped a lot. I do think running is something to be wary of though so it's good your DS is not overdoing it.

Please keep us posted!
Posted 5/3/2017 2:31 PM (GMT 0)
I love positive posts!! Yeah for your son. I am proud of his test scores! That is awesome.

I will probably take Japanese Knotweed for the rest of my life because of all the wonderful benefits of it.
Posted 5/3/2017 2:36 PM (GMT 0)
Keep bragging, Mom!!! What a wonderful BUNCH of improvements!!! Congrats to both of you!!

I'm another one that had serious cognitive issues, and they have mostly all gone now, so yes!! It's more than possible to 'get your brain back'!
Posted 5/4/2017 5:42 AM (GMT 0)
Sorry, I was at work all day.

Thanks for your replies and advice!!

Pirouette: great idea about GI detox. I will look into Beyond Balance again. He used Bab2 for 5 months and I thought it was great. I will look into Bar 2 - have you tried that?

Hi Girlie ! - I think he still has bartonella and would not be adverse to more antibiotics. I might give herbs a good cycle. My son had allergy stuff the spring before he got sick and that's where we found about the extremely high IgE. Now Dr. C wants to work on that.

Hi Vancnyc -I am soo happy your son is doing better!!. I will encourage my son to work on the weights. I really strongly recommend the gou teng and jkw-I really think they helped.

Thanks Peteza and Trav -I really appreciate all your advice and well wishes.

Thank you all!!
Posted 5/4/2017 2:49 PM (GMT 0)
I'm w/ you PeteZa - I'm on JK and a few others for a long long time... maybe forever.

Momster -
I have not tried Bar yet - anxious to do that. I need to get some ordered soon - hoping to be done w/ the vanco this summer. So proud of your son!

-p
Posted 5/4/2017 3:02 PM (GMT 0)
Oh, wow! I just had to drop in and say thanks for sharing that. It really is encouraging. Way to go, mom!
Posted 5/5/2017 1:39 AM (GMT 0)
Glad your son is making strides forward. He's lucky to have such a supportive and caring mom. Wishing him continued healing.
Posted 5/5/2017 1:56 AM (GMT 0)
Awesome Momster!

How wonderful to hear healing success stories like your son!
Posted 5/5/2017 4:20 AM (GMT 0)
LymieMomster,

Thanks for sharing that. From one Teen Lymie Mom to another, it gives me great hope to hear of healing and better days.

My 17 year old daughter has had chronic fatigue since beginning treatment a couple of months ago. She does almost nothing. She only has enough energy to hang around the house. (Thankfully we happen to home school and are wrapping up her classes at her own pace.) Once every few days she will feel well enough to go somewhere. I am looking forward to future days when she feels well enough to do more and more normal things.

Congratulations on the progress! I'm very happy for you and your son!
Posted 5/5/2017 3:17 PM (GMT 0)
Middleagedmama, have you looked into viral infections for your daughter? Often they are the cause of extreme fatigue like that.
Posted 5/5/2017 3:54 PM (GMT 0)
Hi Traveler,

Which viral infections should we be looking for? I haven't looked into that at all.

Thanks.
Posted 5/5/2017 4:32 PM (GMT 0)
Well, EBV is one that is the culprit for many of us, and I know from personal experience with it (ugh!), that it can cause significant fatigue - enough to keep me bedridden for up to 2 months when I was dealing with it in high amounts in the beginning.

I believe there are other viruses that are common with these infections that can also cause significant fatigue/malaise. If you have a doc that you trust, have then run viral testing on your daughter - it would be a lot better to know what you are dealing with instead of trying this and that and guessing the whole way.

I prefer to use Lysine to keep my herpes viruses under control (I have HHV1 as well as HHV4 - which is EBV), but good antiviral treatment from a LLMD would work well also. Many use the pharma drug Valtrex or Acyclovir with good results. Lysine also keep CMV (Cytomegalovirus) and other herpes viruses under control.
Posted 5/6/2017 1:02 AM (GMT 0)
Thanks everyone!

Middle aged mama
- may I ask what your daughter is taking and what she has been diagnosed with??
Posted 5/6/2017 3:37 AM (GMT 0)
Hi Lymiemomster,

My daughter has been diagnosed with Lyme and Babesia.

Currently taking Azith (pulsed), recently added Cefuroxime, and a couple different probiotics. There is a natural remedy we are slowly adding in and will be adding Malarone soon as well. The LLMD is having her add everything in very slowly and gradually.

Feel free to email me if you want to chat more.
Posted 5/6/2017 3:38 AM (GMT 0)
Traveler,

Thanks for the info. I'll ask about EBV. This chronic fatigue and being housebound is difficult.
Posted 5/6/2017 3:42 PM (GMT 0)
VERY difficult - on everyone! Best of luck!! And let us know how things go!
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