help with fatigue

[kimballot]

DS14 is positive for PANDAS and likely for lyme/coinfection. We have been treating him with a lyme protocol (doxy / azith daily and tindamax on weekends) for a bout 3 months now. He continues to complain of fatigue and attends school - on time - about 2-3 days a week. He is usually late 1-2 days a week, and he misses one day entirely each week. When he is home he sleeps until easily 2 or 3:00 - then gets up, eats, tries to stay caught up on work, and then goes to bed for the night.

 

The problem is that there are days when he seems almost hyper and seems to have plenty of energy.

 

As far as "fun" activity - he is able to go to the skate park on Saturdays for about 4-5 hours... but is pretty wiped when he gets home and usually sleeps all day Sunday (he used to go to the skate park for 10 hours or more easily).

 

I am looking for help to know if:

 

1. This is really related to the lyme and/or the treatments. I have advocated for DS for a very long time but I really do not want to be making excuses for something he can control.

 

2. If anyone has any supplements or other ideas to combat fatigue and get kids up and to school in the morning.

 

3. How long with this last - is there an end in sight... will it just start to resolve on its own or do I need to be investing in some additional counseling (DS already getting some counseling and has a behavior program, but neither is touching this.)

 

Thanks so much to all of you great parents!

[LNN]

It very well could be lyme related. Tindamax is a killer. We had to stop after 5? weekends - DS couldn't handle it. You say your DS can make it to school on time 2-3 days/week. Generally the same days of the week? "Most" people feel a bounce - a few good days - after a tindamax weekend. Do you see any correlation/pattern? Does the energy come in any sort of pattern?

 

The sleeping all day Sunday would also match - assuming you're starting tindamax on a Friday night, by Sunday, he's had 4 doses and may be knocked out by it.

 

And then of course, he's become that alien creature known as a teenager and while I don't yet have direct experience, I hear the entire species likes to sleep past noon.

 

Could it be lyme? sure. Could it be teen stuff? sure. How do you know? IDK.

 

As for helping him feel better, there's detox and there's this little topic near and dear to me called methylation But I don't want to go there unless you want me to.

 

Aside from those two topics, the other thing you can do is either take an abx holiday for a few days - if you see significant changes - good or bad - you'll know it's probably lyme related as opposed to teen related. Or you can back off only on the tindamax. Skip a weekend - or only do two doses instead of 4 - and see how he feels for the following week.

 

Does it end? My kids are significantly better - but it took us a long time to uncover all the things that were playing a role. For us, it was lyme/bartonella, pyroluria, metals (mercury for DS and copper for DD) and methylation for DD. Yes it ends, but for us it took more than a combo of abx to finally get sustainable improvements. (aren't I a ray of sunshine?)

 

Hope it's much simpler for you!

[MichaelTampa]

Fatigue is common both as a lyme symptom and as a side-effect of the treatment. As LLM says, perhaps an abx break would give you that information somewhat. One thing I took for a little while that helped a lot with that was pregnenolone. It is cheap and available at the health food stores. It is a hormone, so something to be careful about, not sure I'd recommend it without being guided by a doc or good energy tester, but it is something that can potentially help.

[sf_mom]

Adrenal fatigue and fatigue is common with Lyme et al as a herx and a symptom. I am taking vancomycin, tindamax and mepron daily and the fatigue has returned since starting this particular combo... so, this time its resulting as a herx. I did have afternoon fatigue prior to being diagnosed. The fatigue really wipes me out 'sometimes' and when its bad I'll need a three hour nap and when its not so bad a 1/2 hour nap. I also suffer from adrenal fatigue and that is basically when you exercise or over exert, it wipes you out and you crash afterwards.

 

For Adrenal Fatigue I take: ATP Fuel by Researched Nutritionals, Adrecor (not sure I spelled it right) and Lymphomysot shots. I can actually feel my Lymph nodes flair and the fatigue set in..... clearing the Lymphatic system really helps.

 

Edit: Good friend also with Lyme suffers from much worse fatigue. After a weeks worth of work she is typically in bed entire weekend. She also takes similar supplements at greater doses.

 

-Wendy

Edited December 21, 2011 by SF Mom

[momaine]

I'd would say it is very likely lyme related. My 15 yo dd who has Lyme,Bart, and Pandas, slept till 2 o'clock pm on the days I didn't wake her up, regularly for the last couple of year. Only now after almost a year of treatment does she finally sleep less, but still much more than most people. My LLMD said CoQ10 should help but I'm not sure if it did, when I was giving it to her and taking it myself. Anything that helps with detox should also help. (like activated charcoal, etc)

 

The thing that has helped me personally, is a prescription called Cholestyramine, which also acts as a detox. I too, am wiped out on the day after my two days of Flagyl, even with the Cholestyramine. (acts the same as Tindamax) Fatigue has been worse for me now as a herx than it was before I was diagnosed, though I was quite fatigued then too.

 

Some days it hits and I can't quite say why, but other times it seems directly related to when I increased meds.

 

Good luck.

[lismom]

Hi there, its Kathy and liam. You hit the nail right on the head for us. First off I'll start by saying I am in the process of a 504 being approved for liam. We are still not quite at a year for treatment and fatigue has its absolutely dibilitating moments for him, and lately he has been going to school maybe 3 days a week. And yes there are times where he his happy to see his friends on the weekend and probably pushes himself to do it and is wiped out the day after. I let him have those times because I know its importtant for his mental health. He just finished 8 months for Bart and we switched up meds for lyme for the time being. He is actually having moments where he is better than before. Fatigue has been our biggest battle. Compared to 1 year ago I'd say he is about 60% better in that department. For us to be honest nothing has help except for time. The supps I did try just messed things up in my opinion. message me if you want. kathy

[JuliaFaith]

Just to throw something else out there...when my son was treated for nasal staff his fatigue almost disappeared. It does get worse when he flares up though.

[sptcmom]

Fatigue occurs due to various factors and we have great posts above.

Please check for viruses. I find many of my patients test high in mono and they are quite unaware. I find CMV and EBV infections can be stealthy and cause a huge amount of fatigue. 1 dropperful of Viruchord and 1 dropperful of viressence twice daily work like a charm.

What I would like to add is when the bodys iron levels are high due to dietary consumption mostly (red meats etc), the microbes multiply faster and deplete intracellular mitochondrail energy production. This is what I've read.So reducing red meat consumption to normalize iron levels, reducing emotional stress is also a biggie to keep the cortisol in check. ATP fuel is a good supplement. Researched nutritionals has about 4 supplements for different kinds of mitochondrail support so a look at their website is a good idea.

That is symptomatic relief.

Now if one wants to tackle the adrenals themsleves then I use Homeopathic sarcode remedies like Adrenopath and for tonifcation and drainage support I use Adrenal tone along with a good antioxidant combination like CoQ10 and Phyto Rad. This combo helps the adrenals to heal, repair and regulate.

 

On the rare but possible side of things - In some patients I find the beginnings of CCSVI and due to which they are "feeling" fatigued. Its a perception of being tired kind of borderline depression due to a dysregulation of the blood supply. I use neurobiofeedback to improve cerebral circulation and that helps almost immediately.

 

I always use a good detox and drainage protocol to get rid of all the byproducts produced by unutilized supplement bits.

[cobbiemommy]

Fatigue is absolutely a Lyme related symptom. DS, 12, has horrible fatigue. When we switched off of Rifampin to Minocycline, the level improved somewhat, but if he overdoes it, he's toast. I know you don't want to make excuses for your son, but he is sick (even if he doesn't look like it). Get attendance matters written into your 504 or IEP, so that you don't have the truant officer at your door. Have your doctor write you a note explaining the fatigue which can be used as documentation for your 504.

 

Our doc says to use L-Tyrosine, balanced with L-Tryptophan for fatigue/anxiety.

 

Cobbie

[SSS]

Hi- I am also dealing with fatigue, but can't get a good nights sleep to save my life.

Man, to sleep past 4 hours would be heaven- in fact, it is so bad, I am thinking of asking for something prescription to help me.

Thankfully, dd6 sleeps through the night 95% of the time with 1 mg. melatonin.

 

My thyroid panel has always checked out normal, but I have started taking drops of adrenal cortex in the a.m.

I am also making sure I supplement B vitamins in the morning.

 

SpectMom mentioned Researched Nutritionals, Dr. B's line of supplements-

I just purchased Transfer Factor Multi-immune - I am going to try this-

see how it goes for a month-

I want to try next the Researched Nutritional ATP after, but perhaps I can start sleeping through or won't need it-

but it is out there- although it is a big commitment at 10 caps a day for the first 2 months-

that turns me off- but we will see how the next 2-3 months go-

 

The fatigue is a hard one-on one hand, all the good sleep helps the body repair.

[GraceUnderPressure]

Hi- I am also dealing with fatigue, but can't get a good nights sleep to save my life.

Man, to sleep past 4 hours would be heaven- in fact, it is so bad, I am thinking of asking for something prescription to help me.

Thankfully, dd6 sleeps through the night 95% of the time with 1 mg. melatonin.

 

My thyroid panel has always checked out normal, but I have started taking drops of adrenal cortex in the a.m.

I am also making sure I supplement B vitamins in the morning.

 

SpectMom mentioned Researched Nutritionals, Dr. B's line of supplements-

I just purchased Transfer Factor Multi-immune - I am going to try this-

see how it goes for a month-

I want to try next the Researched Nutritional ATP after, but perhaps I can start sleeping through or won't need it-

but it is out there- although it is a big commitment at 10 caps a day for the first 2 months-

that turns me off- but we will see how the next 2-3 months go-

 

The fatigue is a hard one-on one hand, all the good sleep helps the body repair.

I have adrenal fatigue and have found time released melatonin to be pretty helpful - have you tried it or just your dd?

[NancyD]

Time released melatonin was also the answer for me. I've benn taking it all year and wow, what a difference a good night's sleep makes!

[SSS]

Thank you for the suggestion- I did try time released melatonin about a year ago-

very negative experience- it did not put me to sleep, but rather I was unable to move,

but my mind was awake, I layed there and felt 'trapped'. Ugh.

Afraid now of melatonin. Dd is not on time released.

 

I have had this type of insomnia for years- was given Trazadone to take before bed a few years ago,

(type of antidepressant) low dose- helps to fall asleep, but I cannot stay asleep.

(TMI) But I also have frequent urination-

 

Will ask for help next appt.

[GraceUnderPressure]

Thank you for the suggestion- I did try time released melatonin about a year ago-

very negative experience- it did not put me to sleep, but rather I was unable to move,

but my mind was awake, I layed there and felt 'trapped'. Ugh.

Afraid now of melatonin. Dd is not on time released.

 

I have had this type of insomnia for years- was given Trazadone to take before bed a few years ago,

(type of antidepressant) low dose- helps to fall asleep, but I cannot stay asleep.

(TMI) But I also have frequent urination-

 

Will ask for help next appt.

How frustrating! Sometimes I have more vivid dreams than usual from the melatonin - usually when I'm sleep deprived - but I've never experienced that. Have you had your cortisol and neurotransmitter levels checked? That should be covered by regular insurance. The adrenal cortex supplement sounds like a wise move!