Back from LLMD need ADVICE

Just sending you hugs, Huddie....for you and your family.

I wish I had answers or advice for you.

Take a deep breath and remember that you'll get through this....one step at a time. Remember to take care of yourself, too.

xoxo

Huddie, so sorry about your bad doctor day and for your marital problems. That right there is a heavy load to handle on top of lyme symptoms.

You are so right about stress bringing on more symptoms.

Up your detoxing for a couple of days and then hit those herbs. I really think it is time to add in a new one. Hold at the dose you are on with the 3 you are taking and then start a new one.

I really want to see you make some improvements.

You really need to take care of yourself. I feel concerned for you, that's for sure.

Huddie, I am so sorry you are going through this. I send up prayers for you. Marriage, motherhood and life is difficult enough without lyme thrown in the mix. =-(

Hopefully your husband will see the light soon. Unfortunately if he is dealing with lyme too, he may have to find out the hard way.

It sounds to me like your LLMD wanted to side with your husband. Its a guy thing (maybe) and should have no place in treatment. If he is not consistent, than I don't think he is trustworthy. Just my opinion.

One thing I know for sure is that you must take care of yourself in order to take care of your son. You need to sleep, eat well and detox like crazy. Also as Peteza said it may be time to add in another herb.

I saw my LLMD and she suggested a product called Neuroflam. She said it will make a huge difference for the neuro problems which you definitely are dealing with. She also said Tryptophan before bed because, according to her the lack of sleep is a big issue. If I am remembering right that is an issue for you, too.

If anyone here has tried either of these products hopefully they will chime in as to wether they work or not. I have them on order but have not started it yet so don't know if they work. I am at the point where I am willing to do what it takes to get well and will take her advice.

Blessings and a big hug to you.

I know you had a hard time with Japanese Knotweed before, but gosh it is the most wonderful.

I would definitely give it another try.

First you need to get calm, detox and then try it. You never try a new herb until you are stable. Otherwise you are adding insult to injury. It might take you a couple of days before you get this LLMD experience behind you. I envision putting it in an elevator and sending it to the basement to be burnt in the incinerator. That's how I deal with garbage (drama) that fills up my brain.

Hang in there and I will say a prayer for you this morning.

Added to say, I am still taking J/K and probably will forever. It doesn't hurt you at all. Some of the most important health benefits of Japanese knotweed include its ability to prevent and treat cognitive disorders, improve heart health, lower your risk of cancer, reduce gastrointestinal distress, lower blood pressure, maintain proper insulin levels, and many other unique benefits. - why I will always take it.

Post Edited (PeteZa) : 1/4/2017 9:48:42 AM (GMT-7)

Huddie do you work or are you at home with your son?

I recommend you to try Gou Teng - it is good for neuro issues you are experiencing.

Blueberry,

Just checked it out and Gou Teng is Cats Claw. Am I reading that correctly?

CC is also in the Buhner core right? Perhaps I try that one next after the neruo-tox ease.

Thanks.

Gou Teng is Uncaria rhynchophylla, while Cat’s claw is Uncaria tomentosa

blueberry, Thanks! I looked it up and didn't see the difference. Now I get it. So it helps a lot with neuro? Good to know. I'll drink the entire bottle -just kidding.

Chick, You are so right. My husband is a good guy and is the protector, fixer, etc.. He has been acting so odd that I think he has Bart. I know he cant' stand that we are all sick. His wife who could do more in one day than most people do in a week is now sick, cranky or sad, and does the bare minimum. His son can't do much at all, which drives him crazy, and he's on lots of meds too that he swears aren't bothering him - but how can they not be.

My husband and I are similar in that we are problem solvers and goal setters. It's frustrating to not have any type of end date on this. Hard to plan, etc...

All of us need a dose of joy, fun, forgetting about all of this.

Thanks for listening!

Daisies,

Thank you! No I didn't see you other thread.

School is calling me today. It was supposed to be at 1:00pm but just moved to 4:00pm. I know nothing about the school laws and what is permitted.

He was on leave for 8 days before Christmas break. He did all assignments, tests, homework. So is not behind.

It is a private school so not sure any of the 'rules' apply. I know we will be discussing 'Skypeing' in which may solve a lot of problems.

I am curious to know how much school has to be missed before they will leave a child back. Afraid to ask that. I would rather him miss all of this year and repeat (he is youngest boy in grade) then drag it out, go half way, and mess up future grades. I realize it's not that cut and dry.

Sorry you have been through so much - at least your kids have each other. Mine is an only and getting so lonely! He must be quite sick of me by now.

I'll update you on what the school says. Thanks Daisies, I always appreciate your wisdom and experience - and kindness! Love this board.

Thanks Jenny,

You are too sweet. I rescheduled it to next Monday.

Because the day wasn't quite bad enough, our building painted our hallways/stairwells with no signage/warning. The paint fumes were really hurting my son and me. We were each in our bedrooms, doors closed, windows open (in January) and fans on. Still burning eyes and throat.

We drove up to our weekend place to escape the fumes. We just got home Monday night and I had to pack up all our food, herbs, meds. and come back up.

On a good note my husband left work early, picked up dinner and we went. I think he finally felt like he could 'fix' something and help us!

Going to sleep now. I hope I sleep and I hope ALL OF YOU sleep. Sweet dreams.

Thanks for all the support.

Hi Huddie,

Wow did your LLMD muddy the already swirling waters or what?! I'm so sorry and of course you are feeling awful with your own illness - a very stressful combination.

I was just thinking about some of this today before I got on here with our own situation. I was thinking about how it's not nearly like it was last year, when he would go to school and call an hour later to get picked up from exhaustion etc. The dark circles Lymiemomster mentions were more prevalent and so many other symptoms. I was considering how DS has only had to call 2x this year to come home early. DS has had a bit of a set back this week but still hasn't missed school which definitely would have happened last year.

I would also, as others have said, get a second opinion. 2-we went pretty much 100% on how our son felt. If he felt like school, he would go. If he needed to leave, he left. If he felt like sports, he could try it. They learn their limits by how they feel afterwards. I do not think staying at home if he feels like trying to go is helpful nor is pushing him to go when he feels awful. I know school is a long way from home which makes it harder to decide. Again, anything you can do to have him at school closer to home after this year would be great. Eg, DS missed 20% of this school year, even though he is *so* much better.

Now most parents here have indicated that their kids couldn't do much for at least 6 months of initial treatment, with some taking even longer - it seems like incremental improvement at times with plenty of setbacks - just longer between and shorter lasting. Given your son's situation of being early in treatment, it's reasonable to believe that may happen too. Time will tell.

Hopefully your DH can understand that the decision to ski is up to your son - training seems like it would be too much although I have been shocked and amazed at what our DS has done this past year. On the other hand, we lost some $$ when he hasn't been able to do something he signed up for. As I've mentioned to you before, weight training was key, inhaler was key, various knee braces were key. But there were days/weeks when he didn't do as much. I think for their mental health, whatever they are up for is worth trying.

Our LLNP says DS can do what ever he can tolerate and maybe that's what your LLMD was trying to say. That doesn't give you or DH any idea as to what your DS can tolerate - only your DS can decide that.

Lastly, as moms who are now having to be overly involved with our teens it is SO hard to separate out medically parenting a sick kid versus letting them take on some responsibility and independence (which most do really crave) for their lives (even while sick). It is something I struggle with mightily.

As far as your DH goes, I have spoken to so many in the same boat and have dealt with it too. Not sure what can help here other than encourage your son to speak up and voice his opinions about all aspects of his life/treatments etc.

Hugs Huddie. Still coming up next weekend Sat pm - Sun - will be quick. Also returning for 2-3 days in Feb.

Peteza,

That doesn't make you old. I didn't know it either. There is a school board that uses those abbreviations and I learned it there when researching HS (high school).

Yang,

Thank you SO MUCH. I was going to email you but I know your plate is full. I have learned so much from listening to you and Lymemomster share your teen DS stories. My son is not an early catch. He has had lyme since he was seven years old. Now that I look back there were many signs. It fully awakened with a concussion last January but we still didn't figure it out until November 2016. This is his 8th week of treatment.

I just spoke with his school and there is a chance he may repeat ninth grade. They are checking with the powers that be. This will be a Godsend if it can happen. He has missed 25% of his classes and no sign of that letting up. He is the youngest boy in the grade and small. He definitely wouldn't be the oldest next year, he could take the remainder of the year to fully heal, and he could hopefully have a proper school experience with a fresh start next year.

My husband is very receptive to this idea because it takes all the stress out of 'how will he be next week, month, year.' My husband also agreed he can't ski train. I wrote him an email explaining that we have the same goal and are on the same team and that we can't risk a relapse. Message received - so thanks for all your prayers - they are working!

Yang, your son must be so strong that he can still play all his sports and is doing so well. I love hearing that. So inspirational of the difference a year makes.

Thanks for always taking the time to write. It means so much.

We won't be there Saturday - but February will be great! Have fun. It's cold so bring lots of layers.

That's great news about school Huddie - will he start next year at his old school closer to home for 9th? That would be helpful because he could very well miss some of next year as DS is - but if it's "easier" academically the new school may be best because getting behind is another stressor to deal with. Given his illness, size/age an extra year will be so good! Glad that is getting settled. With all the stories I read about, the fact that these kids are even in school part-time is a miracle.

Also glad to hear DH is starting to get it - and realizes he can't do full ski training yet. As I said, we signed DS up for some stuff at his insistence and then he wasn't able to attend, no refunds. Better safe than sorry given your Ds has been ill so long.

Hopefully Feb will work out.

Post Edited (yancync) : 1/5/2017 10:30:35 AM GMT