So, we have our appt with Dr. B today

[sf_mom]

Definitely ask around for good LLMD in your area. We have found a home with the integrative approach that uses a combo of herbs, supplements, homeapathy, antibiotics, antivirals, detoxing protocols, etc.

 

If you have potentially more than one sick individual in the family and costs are of concerns start with the sickest first. Be up front with your potential LLMD regarding your cost concerns. They understand the financial impact all too well and can limit testing to what is covered by your insurance or work with your budget. It sounds like you've survived a long time with LD and being judicious about how and when you treat is perfectly fine. You just might want to give yourself a break from some of the craziness and understand that those symptoms are real. There is a lot you can do to help your immune symptom in advance of potentially fighting a microbial war. I too suffered from fatigue 'thought I was drinking too much coffee of 2 cups a day or just getting old'. I also had night waking which is typical between 3 a.m. and 4 a.m. because LD et al impacts the cortisol. It is very common for symptoms to increase after a surgery or in my case two rough pregnancies (we have twins). Our children also suffered from low RBC and Low WBC. I was dumping excess WBC and RBC into my urine all pointing to chronic infections. I feel fortunate to have figured it out in advance of it being much, much worse.

 

When we really looked at my situation I had: 4 viruses, Lyme, Bartonella, Babesia, Mycoplasma.... etc. I had the joint pain, back pain, headaches, fatigue, felt horrible when sick with cold 'flu like symptoms', etc. My symptoms didn't happen over night and were very slow to evolve.... recovery has been similar. Slow and steady wins the race and its truly a 2 to 3 year recovery timeframe.

[fightingmom]

I am stepping away for a minute, and will post again, but that 3-4am thing is so strange. I suffer from what has been called insomnia...but I FALL asleep just fine. It's just that I wake up around that time often and can not fall back asleep. I often wander down to the couch just to avoid waking up my husband from my tossing and turning or going to the bathroom or getting a drink or whatever else I decide to do because I'm so wide awake. Weird.

[fightingmom]

Off topic a bit, but...

 

What the h*ll is this from??

 

This morning my son got up on his own -- he heard his alarm right away, got up turned it off and got ready for school (mornings are battles here). He even came to my door to make sure I was up. Ok....got ready this morning with no complaining. Took his meds without even sighing or complaining about them or anything being new or changed. I noted it mentally, but you know how it goes.

 

Calls me on his way home (we are a block from school). Asks about my day. Tells me he had a good day at school, and all about how his teacher came in with her new baby, even said the baby was "cute". Came home from school. Asked me about my day. Told me where he planned to go with friends. He came down to take his meds, sat at the island and asked me if I wanted him to pick me up an iced coffee on his way back home today (never have I asked him to do this, and don't know where the gesture came from, but it was very nice and i was shocked).

 

On his way out the door he tells me he is "feeling nice" so if i need help with anything when he gets home to let him know. Well, he leaves and forgot to take out the dog. I call his phone to catch him, and I see him peddle away on his bike and I KNOW this is going to send him into a tizzy, don't dare interfere with what he's got going on especially if it has to do with his friends. He didn't answer, but was on his bike...so I sent a short text "forgot to take the dog out " -- I expected what normally happens...all of a sudden, he's at the door...came back...without even saying a word. Takes out the dog and then yells "Bye" very merrily as he leaves for the 2nd time.

 

THIS is the kid I used to know. The one I saw for about 10 days after steroids, but what in the world brought him back today? Changes since yesterday (mind you at 9:30pm last night I left the house in my PJ's and drove down the street just to get away from him) ---

 

He started Zithromax in addition to continuing the Augmentin

I dosed him up good with Vitamin D3 since his levels are so low and I read that vitamin d plays a role in glutathione and has significant anti-inflammatory properties. Gave him 4,000 IU last night and again this morning.

Gave him zinc last night, and again this morning

Started niacin last night and gave again this morning

Advil last night, none this morning

 

 

So...I added Vitamin D3, Zinc & Niacin and one stinking zithromax

Something in here is helping and fast. He was on the fast track to the hospital over the past week or so. Now he's how he was with the prednisone.

[tpotter]

Seriousy? He picks today to pull this crap? (I know it's not really that way, but jeez)

 

I tried to wake him up at 9:30am - let him sleep in and stay home from school instead of taking a half day. Told him he needed to wake up, take meds, take dog out and he can lay back down for a while if he wanted to. He starts screaming at me to get out of his room and he's not getting up and he doesn't care about his meds or the dog and to LEAVE, LEAVE. Kicking his legs around on his bed, flailing his blanket all over like a nut. I picked up an empty bag of potato chips on his floor in the middle of all of this (which I don't even know where they came from, I didn't buy them) and he freaks out about me touching things and KICKS ME from his bed in the side, very close to where I just had surgery. I tell him calmly that he better watch where he throws his feet and he tells me that if I just get out I don't have to worry about it. Then tells me he isn't going to the doctor and he doesn't care and he's not doing anything I want him to do and if I don't get out of his room I'm going to really be unhappy because then I'll have to deal with more of his crap...not exact words but told me if i don't leave him alone and do what he wants he basically is going to make me miserable.

 

So, will we even make it? Who knows. I'm so over this ######!

 

Sounds like my DS15 a year ago. It is so different now after a year of treatment with Dr. B. Best wishes -

 

 

Also, sounds like my DS19 2 1/2 years ago, and very occasionally now when he's flaring (but it's actually not that bad.) In fact, it is so similar, I just read your post out loud to my DS16, who said: "yep, sounds like him." (DS19 even eats a bunch of potato chips, and these days, he's trying to get himself off of Monster and Mountain Dew, because I promised him that I would take him back for treatment if he stops filling himself full of toxins.

 

Now, when he starts getting even remotely like that, I suck in my breath (it's usually everything I can do not to yell back), and say: "I know you're sick, and not feeling well. That's why you're getting so nasty. I can't leave you alone, because you have to get such and such done, and you'll really regret it by "not going to the dr" or "the poor dog will have to pay the price by not getting fed," etc. It usually works (wouldn't have 2 years ago.)

[fightingmom]

Also, sounds like my DS19 2 1/2 years ago, and very occasionally now when he's flaring (but it's actually not that bad.) In fact, it is so similar, I just read your post out loud to my DS16, who said: "yep, sounds like him." (DS19 even eats a bunch of potato chips, and these days, he's trying to get himself off of Monster and Mountain Dew, because I promised him that I would take him back for treatment if he stops filling himself full of toxins.

 

Now, when he starts getting even remotely like that, I suck in my breath (it's usually everything I can do not to yell back), and say: "I know you're sick, and not feeling well. That's why you're getting so nasty. I can't leave you alone, because you have to get such and such done, and you'll really regret it by "not going to the dr" or "the poor dog will have to pay the price by not getting fed," etc. It usually works (wouldn't have 2 years ago.)

 

so nice to know I am not alone and that rational and calm statements like the ones you stated above will cause your son to re=evaluate and turn things around. Hope we get to that place.

 

you were right, by the way....I still have our pm's and just read one this morning.

[tpotter]

 

 

So...I added Vitamin D3, Zinc & Niacin and one stinking zithromax

Something in here is helping and fast. He was on the fast track to the hospital over the past week or so. Now he's how he was with the prednisone.

 

 

I think it could be all 3. Zithromax is what "saved" my son in the beginning (right after we found out it could be PANDAS, and not bipolar, or worse.) He was better within hours (and that happened 2 more times.)

 

Also, the zinc, Niacin, and D3 can also have that effect, and when you combine all 4....

 

 

Enjoy it all.

 

And, I'm glad I was right I have to admit, though, I still sometimes feel like losing it with them.

 

Long term, though, unfortunately the LD will have to be addressed, but not necessarily all at once.

[fightingmom]

 

 

So...I added Vitamin D3, Zinc & Niacin and one stinking zithromax

Something in here is helping and fast. He was on the fast track to the hospital over the past week or so. Now he's how he was with the prednisone.

 

 

I think it could be all 3. Zithromax is what "saved" my son in the beginning (right after we found out it could be PANDAS, and not bipolar, or worse.) He was better within hours (and that happened 2 more times.)

 

Also, the zinc, Niacin, and D3 can also have that effect, and when you combine all 4....

 

 

Enjoy it all.

 

And, I'm glad I was right I have to admit, though, I still sometimes feel like losing it with them.

 

Long term, though, unfortunately the LD will have to be addressed, but not necessarily all at once.

 

 

Yep, if I can get him tolerable, I'm heading for the lyme next. I feel if he's got it too, with that in the way, it will be impossible to ever get his immune system in check. I know how I feel, and I'm not even PANDAS on top of it...all of this crap compiled together is a giant snowball...

 

 

And, can I just say it makes me feel SO much better to know I'm not crazy and that between all of these things, something kicked in for this kid!!

Edited April 13, 2012 by fightingmom