posted
Most of us are familiar with the statement in the guidelines that aerobic excercise is not allowed.
In an llmd appt for my son I mentioned this (my son plays basketball ) and she said that she heard/read that Burrascano changed his mind on this subject.
Does anyone know anything about this? Searching the Internet yielded nothing about this.
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Keebler
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- Yeah, I've seen a few comments here and there about him "rethinking" some aspects about that yet also did not get far with a web search of various cross search attempts.
Maybe your doctor can provide a direct source on that, directly from him? If she is to attend ILADS conference next month, maybe she could seek that out from him? Maybe she could contact him, herself?
Adrenal & liver support on hand can help ensure it continues to work for your son. Good probiotics and prebiotic and probiotic foods can help the gut strengthen immune function (which aerobics can clobber in a window of time after doing so). That's one thing to figure out: how to keep that window as tight as possible and how to act during that time.
And recovery time planned out. If he feels a benefit that's the key. If he feels it makes him stronger, happier, that's gold.
Assuming your son is thriving and that basketball works for him, does not drain him, much depends on his individual circumstances. Much of that is actually very short bursts - though training practices might be in question IF they clobber him. If they do not, then
I've read various comments by those who have heard Dr. B mention that it may not be so set in stone for all.
Take heat. Most with lyme cannot tolerate heat, even one or two degree can be enough to sicken them. Many reasons.
But, once in awhile there is the person with lyme - and relatively ill with it - who can tolerate heat.
I've read hear of a person who was able to continue biking throughout. The key was he never stopped and lyme had been diagnosed fairly early on. With his LLMD's thoughts, they worked out a plan. It worked for him.
Yet, there have been various others who, although, avid runners when hit with lyme, even when then diagnosed early, well, they were not able do any aerobics for very real reasons.
With relative certainty, though, it's likely that it is never going to be okay for someone who is very ill to do aerobic exercise without first going through the less exhaustive methods of strength training with light weights &/or low impact approaches.
For most with lyme, diagnosis comes only after years being very ill. So that is likely very different from your son.
Each person with lyme has different set of circumstances and that's always been recognized to be wise and do what makes one feel better.
My concern is that the cardiac, immune and adrenal considerations are exceptionally well understood and honored toward respect of care where they exist.
One thing that even a "healthy" person with lyme should know, though, is
QT issues and the heart strain with exercise (and with some medications). If the heart is experience QT rhythm issues, this is one major reason to be extra careful about aerobics and consult someone who is both LL and knows all about this and current findings. More on QT in the Cardiac Thread below.
Some Rx mess with QT, too.
If a person has the ability to do light aerobics without stresses their body, without that "payback" that be very dangerous in some . . . well, then, it's always been a "go for it" approach but to do so very wisely.
Most, though are rather ill. Most do have cardiac, immune and adrenal dysfunction. Many have neutrally mediated hypotension, POTS.
Inflammation of the blood vessels and organs also a concern. Speed and intensity can cause trouble.
Various studies show damage to the heart (mice and then human correlation) when aerobic exercise is done while dealing with viral infections.
A study years ago at the Nightengale instate in Canada show brain changes - not good - regarding blood flow in the brain after a person with chronic fatigue syndrome did aerobic exercise.
This kind of hypoperfusion is also common for those with lyme as a result of aerobics. Not to be taken lightly.
There is also more power in slower movement such as Pilates, Tai Chi, Qigong, restorative yoga, and just walking and moving about in nature, etc. than typically given credit. One can dance at various speeds, too.
Still, much depends upon the individual and their set of circumstances, how long and how ill they might be, etc. If there is any of that "hit the wall payback" that's a big sign it's too much.
And that can be a sign, too, that the liver & kidneys are suffering. Exercise forces the liver & kidneys to work much harder and they often just can't keep up for a person who is ill when the liver & kidneys have so much other stuff to do.
More detail about all the things mentioned in links next post. -
[ 08-26-2016, 01:55 PM: Message edited by: Keebler ]
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Keebler
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- Regarding NMH (neutrally mediated hypotension), POTS and similar issues:
posted
Thanks for the response Keebler. He has had POTS which started and then resolved with treatment. He currently has no symptoms for that.
After talking with him, he does say he will hit a "wall" during some practices but keeps pushing through it.
I think his biggest issue is how tired he is the next day and then he has basketball practice (plus school, plus homework). Since practice is 5 days a week it is tough. When there are games though he does get a break.
I asked the doctor about his source for the exercise and he just said he had heard it. I hope he pursues it. In his defense we have always tried to keep him playing basketball so he has always geared his treatment to that.
This summer when my son's ankle became swollen after a week of working at a basketball camp which had practices after, my son said he couldn't do it anymore. He doesn't want to go to college with it and he viewed the ankle as a setback. Poor kid.
It sounds like even though he doesn't have heart issues he still could get it when exercising?
I thought I had read somewhere that it was easier for bacteria/virus's to pass into the brain when exercising but can't find where I read that.
Thanks for the links. I dint consider his liver and kidneys working extra hard when exercising.
[ 11-02-2016, 08:41 AM: Message edited by: terv ]
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me
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My LLMD sees nothing wrong with aerobic exercise as long as you don't overdo it, it is graduated, and your body is able to handle it. He says not to do aerobic exercise if I'm too tired or if it will cause flares.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Keebler
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- When you say " . . . think his biggest issue is how tired he is the next day and then he has basketball practice (plus school, plus homework). Since practice is 5 days a week it is tough. When there are games though he does get a break. . . ."
That sure sounds like it is not a benefit but a harm.
"how tired he is the next day" is a red flag, especially when his young and growing brain and body are still burdened with the physical stress of going to school, concentrating -- while still battling systemic illness.
There can be many reasons he may not back off and, very often, stigma is it. The stigma of being labeled by others & in his own mind of being "less than" -
- it's the message all through media too "push harder, faster, stronger" . . . "measure up or get out of the way" - we see these messages everywhere.
sadness of not belonging to the group he may want to, so much so that he is not giving into a body that is sending him messages to stop pushing . . .
and if the doctor is going more on hearsay (someone said, someone said Dr. B said "this" does not mean it all caution about aerobics goes out the window - or that should be seen as advice until clearing up exactly what he said, directly from his mouth or writings). . .
rather than the specifics of his effects from what he is doing, that could also be a subtle push for him to ignore his needs. He could be a bit intimidated, especially when so many doctors are just gung ho on aerobics.
Any of these influences may or may not be the case. There may be other aspects. I admire his determination. However, determination does not always work FOR us. It can work against us, too, when we go the wrong way down the highway and just keep going because - that's what people are supposed to do - just keep going.
I am well aware that some of the stuff around exercise that I've had to deal with may be coloring my take on this, too. My body / brain suffered terrible damage from pushing my body too hard because I thought that was what it took. I was very wrong. I had no clue how very wrong.
One thing that can really trip us up and seems a bit unique to lyme (it seems) is that, often when we are in the middle of an enjoyable activity - we might feel fantastic - just out of the blue, where did that come from? - fantastic. We might feel like we can walk on the beach forever and we just keep going.
Until.
It just hits us and we can't get back. Literally, this happened to me so many times and often would need strangers to help nearly carry me (supporting under each arm) back.
That's happened at the beach but also in various neighborhoods, in the city center. I wound up sitting on a lot of sidewalks when my legs would just not move anymore.
And, after a week (sometimes a month) of recuperating, I would just do it all over again because that experience - for the little while it was fantastic - just kept calling to me. I had to get out and just keep going.
Collapse - even from slower walks or slow swimming - was just expected and I considered that the price for a short time out like a normal person.
But we just can't follow it too many times before we can go no more. Damage can happen so it's best to be aware and be cautious.
Hope, though, in that many who have successfully transitioned through treatment / support have recovered well and are doing all kinds of things they want. Their endurance is tip-top. Many do say.
So, I hope he can find the balance of what works for him at a safe pace, something enjoyable that makes him feel better - not just during a short, enticing adrenal high when all is fun & games - but when the lights are turned and all go home . . . and when the next day comes around. -
[ 08-29-2016, 02:36 PM: Message edited by: Keebler ]
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Keebler
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- As the rigors of organized daily practice seem to call for "payback" . . . wonder if might be okay if he were to arrange with coaches / players to just show up when he wanted for practice and play for as long as he felt best? Or some other creative arrangement?
Is there a group who just wants to play together for fun a couple / few times a week?
There may be some ways to have the some enjoyment without the stringent requirements.
Maybe there is a another sport that would be more enjoyable and not competition, especially with a recently sprained ankle. Biking, fencing (well, that would be hard on an ankle but not as hard as BBall)? You all could have some fun with this at the dinner table exploring options. -
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posted
This all started when my son told me that he was "done" with basketball. He couldn't do it anymore.
Unfortunately I didn't know how he would frequently "hit a wall" during practice or that he was exhausted the next day when we had his recent LLMD appt. She brought up getting him better to play this fall. He didn't speak up about wanting to quit so I did.
If I had known about his physical symptoms I would have told her and she may have had a different opinion on his basketball playing.
My son and we have put lots of hours of training and playing (and money) into this so it is hard to let it go. We have all looked forward to high school basketball but we have to let it go. Easier said than done.
My son loves playing and being on the team however he is afraid of never recovering from this given the stress bball puts on is body. He has 3 years until college and he doesn't want to go to school sick. Plus he wants to get good grades in HS.
[ 09-02-2016, 07:42 PM: Message edited by: terv ]
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Keebler
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- Thanks for sharing the dynamic cliff notes. Sorry to hear of the situation. I tried a few times to write this and never can get it right. So, please pardon if it comes out muddled. Some thoughts that I'm sure I cannot linguistically connect with any amount of grace yet I feel might be of concern.
Fatigue, alone, has been the number one suicide trigger for me. The degree of fatigue that comes with lyme is simply undescriable ? to others, and there may be no way they can understand.
They MUST trust someone who says fatigue is too much. It's not depression, it's fatigue. Believe me. Yet it can kill one's spirit because one's body is so crushed but they have to still pretend it's not.
Obviously, that fatigue suicide trigger never got pulled but nearly did and for so many years / decades, starting my freshman year in college, there were such times where the fatigue (undiagnosed lyme then, dx as "mono" and that may have been on board but, looking back, lyme, too).
Even decades later when diagnosed, no treatment options that were accessible to me really helped much. (not complaining but explaining)
My father died thinking me a failure as a human being due to my lack of - well, anything.
He never understood the complexities.
Stress from having to pretend all is normal is hard. At any age, knowing a parent is disappointed can be crushing.
As any aged person, knowing my body is not my own would be very hard, and harder for young people. That's usually a statement around more horrific abuse issues yet . . . lyme robs one of so much to begin with and
when a child is expected to perform in a sport not to his / her own choice, -- or if a certain activity once was their "love" but it's not working out now due to illness -- that, too, can feel like one's body is not one's own in so many ways.
Perhaps there is an emotional risk if they were to share the disappointment they feel around all the issues without feeling a failure - in others' eyes and in their own.
The guilt carried from "wasted money" for whatever . . . clobbered by illness . . . is a terrific weight to carry.
My hope is that nothing here will be hurtful, but maybe help prevent some of the heavy torture that I had along the way.
Your son sounds like he has a respect for his body and some wisdom about the realities of lyme. Even with the best treatment, there is no guarantee. It can take years for a good recovery. Overdoing it can sink the ship.
That your son is putting his academic future first over being on the team (considering the circumstances) says a lot for his maturity. It also says a lot that he's able to respect the fatigue and physical stress matters. -
[ 08-30-2016, 03:51 PM: Message edited by: Keebler ]
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I feel for you, terv. I understand how it affects the entire family, especially your husband. I love watching basketball myself, but wow the exercise is pretty extreme!
It does sound like your son is mature for his age and thinking ahead. He wants to get well and DO WELL in life! That is good!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Thanks for sharing all that Keebler. I can take pieces of that and see how it applies to our situation. Particularly the weight that my son carries.
I spoke with my husband about this situation. He brought up about how well my son improved last year while playing bball. This was to prove the aerobic aspect helps him.
Long story short, I brought my son into this conversation and it was determined my son wanted to be part of the team but not on the team. He said he would enjoy going to practice and watching. Going to the games, running the clock etc.
I talked to my son later and he said he didn't feel any pressure to do that and would want to do it.
As far as the aerobic part that my husband wants him to keep doing even though he isn't playing basketball, I told them that my son has to learn his limits. He can never hit the wall or work so hard he is tired the next day.
Thanks everyone for your input and support.
[ 09-02-2016, 07:45 PM: Message edited by: terv ]
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posted
terv, you say: "I thought I had read somewhere that it was easier for bacteria/virus's to pass into the brain when exercising but can't find where I read that. "
Just do a search for aerobic, and you get this: "I agree that people with Lyme need to stretch and do gentle exercises, and that too much aerobic exercise, too fast, will deplete the adrenal glands, decrease T-cells, and open up the blood-brain barrier so that more Borrelia can get into the brain. Anaerobic-type exercises are more important, especially when people are just starting on a new treatment protocol."
Looks like it might be mostly important at the beginning of a treatment protocol? Sorry I can't be more helpful.
I wish your son all my best.
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Brussels
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My rule of thumb was:
- if I exercised and felt BETTER about an hour after stopping it, it meant it was good to my body and immune system.
- if I exercised and felt drained, exhausted, and it took hours or even days to recover, exercise was doing me harm.
Fatigue is bad for everything: specially for the immune system.
I never exercised when I was too tired to do anything.
And I still recovered from lyme, completely.
However, when I felt a bit better, I always walked, did gardening, did short hiking tours in hilly areas, or cycled on flat areas.
The better I got, I cycled more, started taking more hills up and down, stayed longer outside gardening, then added some swimming.
But I was always very aware to avoid exhaustion. Exhaustion felt terrible during lyme. It felt exhaustion was going to kill me.
I never bought this story of Burrascano: 'you have to do aerobics during lyme or you won't recover'.
Maybe for people in better health than myself, that could work.
But when you have barely energy to even stand up, aerobic exercise, in my opinion, can even kill you faster. At least, that was my feeling during lyme.
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ukcarry
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Exceeding your limits with Lyme and co can really set you back, irrespective of where on the scale your limits are.
It is hard enough sometimes for an adult to recognise and stick to those limits, but harder still for an adolescent or child who may be carrying a lot of anger about the illness and may have difficulties recognising or accepting his or her limits. This is where a parent can really help to advise and encourage their child to talk through honestly how they feel and to learn their current limits: from my experience, the 'pushing through' mindset just makes things worse.
Nobody with this illness needs extra pressure put upon them. It can be very hard to set aside your own or other people's expectations. Your son has done well to be able to conclude and state that he wants to come to practices and to be involved, but not to play, in the team for the moment. As long as the practices themselves don't set him back, that is a good way of keeping his hobby and social life, thereby helping to motivate him and keep his spirits up.
Good luck with his treatment.
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Gosh, this is a super relevant thread for us, so thanks for posting. We are in the same boat with our almost 15 yo 9th grade DS. He is currently running cross country and doing okay. He had no Lyme fatigue all summer - for some reason this is often the case. He still has plenty of breathing issues and some POTS but not bad. He had a terrible breathing episode over the summer 1.5 hours into a lacrosse camp that was definitely heat induced. It is pretty hot and humid where we live. He would perhaps like to do freshman basketball and lax in the spring.
Now after reading this I wonder if it's the right thing. His LLNP/LLMD group says he can exercise as tolerated.
I will have to look into Keebler's links.
Luckily DH and I are all on the same page and have had to readjust some of our expectations as to all capabilities for now. We are just grateful that he's not in a wheelchair. I'm the main researcher and caretaker so I think it's harder for DH to always believe what I tell him but he has seen some of what's gone on and knows when it's bad, it's really bad.
DS missed a lot of school last year with extreme fatigue and herxing. We are bracing ourselves to see what this October brings. He is 9 months into treatment now so perhaps that will show in reduced illness this winter.
-------------------- Parent of teen with late stage Lyme, mycoplasma, bartonella and babesia. Dx Nov '15, in remission early to mid '18.
I assume it is your son that wants to keep participating? That is admirable. When my son had POTS (which was induced from lyme treatment) he said it was the worst. It felt like his heart was going to beat out of his chest.
Could your son participate in sports when he was herxing? My son also missed a bunch of days from the herxing. Mostly from flagyl but now the biofilm stuff is killing him. That is what prompted this whole quitting from bball thing.
He has been treating for about a year and has seen a lot of improvements in other areas. But he still feels like crap has fatigue and major memory things (besides the swollen foot).
[ 09-02-2016, 07:46 PM: Message edited by: terv ]
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Well, I say we are on the same page now but that's not to say there aren't times when DH is pushing for more than what I think is reasonable. I think we both agree that we should really listen to what DS is saying as well as closely observe how he is looking.
We generally take DS's lead. That means we have lost money on that lax camp and other stuff because he can seem fine and then the arthritis flares etc or he's too sick to do anything. He tends to be extra fatigued and sick in the wintertime too. Herxing/fatigue is definitely the deal breaker and I don't hesitate to make sure I talk fully about DS's situation to coaches - particularly because he has breathing issues/heart racing stuff that spirals into what I guess is a panic attack because he feels like he's suffocating from those bugs. If the coaches saw that they'd want to call 911 and we want to avoid that. This means he isn't necessarily playing on teams that he formerly would be capable of and I'm not sure what it will mean for high school. He has switched to lifting weights (advised for Lyme patients) and now is trying running.
He has to watch getting overheated. He took a day off each of the first 2 weeks and was taking naps a few days after cross country practices and a new protocol after a longer break from abx than usual. I wondered if we should encourage him to reconsider but he said no, I'm not Lyme tired so...here we are. He's also extroverted so being in a group is so important. I could relate to Keebler's wisdom on this challenging aspect.
DS, like your DS, advocates for himself on how he is feeling and we definitely respect what he's saying because he just can't move. They are growing into adults and I think the more we can respect this and get their input the better. We let DS choose which treatment path for Lyme he wanted to try first, for example.
In my opinion, they have to learn to respect what their bodies are telling them and your son should win an award for that - it's very impressive and he should be commended for it! They will have to recognize flares and deal with them straight away. Our DS is less inclined to stop and not push through which worries me. Hopefully he will grow into that. I wonder about college and if DS will be mature enough to do what it will take to stay well.
This year will be interesting because I think we will be moving into the phase you're describing - as they recover they may not have that "I can't move off the bed" feeling to making it through the day only to collapse in cognitive and physical exhaustion after school but of course they look fine on the outside. Life is just too long and hard to push DS while he is recovering and/or trying to get into remission. Getting into remission is how we talk about it between DH and I because to say you're cured from late stage Lyme/co infections seems a stretch from what I've learned. I think that helps the way we frame it for ourselves too.
The school nurse asked me the other day when I was dropping off his medications if he was seeing a therapist to help deal with all this. DS did briefly before he was diagnosed when we made him for some behavior that was most likely Lyme related - impulsive thrill seeking and some other stuff -we just didn't know it yet. I wish he would go now but he refuses and seems to be doing okay because he's feeling great. If he is sick again this winter, he will be so bummed and who knows how that would play out. I worry about some of the possible mental effects not just from the infections but from the ordeal!
I wish your son well. He sounds like an insightful, intelligent and athletic kid who is perhaps moving into a more nuanced view of what he can do sports-wise at this point in his life so that he can focus on strengthening/healing the cognitive part which as we all know is affected with Lyme & co. Hopefully your husband will come around to realize this as you talk about the long view of your son's life. I think whatever brings them joy in this extra tough phase of life is what we can try to support. If it's being the team asst then go for it! Ultimately, our kids have to live their dreams not ours but sometimes that's hard to face.
Hope you made it this far - I wrote more than I expected. Nice to bounce ideas off another parent in a similar situation.
-------------------- Parent of teen with late stage Lyme, mycoplasma, bartonella and babesia. Dx Nov '15, in remission early to mid '18.
surprise
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posted
Hello- I notice no mention of PE classes. Here, daily PE classes are a BIG deal,
starting in 6th grade the kids have to suit up and exercise- running/jogging a few miles, sit up, stretches, sports- you get the idea.
My daughter, now 11, congenital Lyme low tone issues from birth (never crawled, rather unactive, etc)
Long story short, after LOTS of treatment, she is doing well!
I am so pleased about PE, because she is doing it!
To me, it is a very well run (no pun) program, and thoroughly exercises/ conditions her body. She has never played a sport, ridden a bike/ had the interest.
With the 5 day a week PE requirements, no other outside/extra exercise. I have lectured her about taking it easy/ okay to build up, don't overheat, etc.
Exercise has been a large piece of health for me personally. Tho I do not do high cardio/ never have, but circulation and working muscles is critical, IMO.
And the long school day, with PE, then homework- it's quite enough.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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That is such good news that your daughter has progressed so well with her treatment and can now participate with her PE class. I am so happy for both of you. You sound like you have had a big hill to climb.
The school day and homework is so fatiguing. My son is struggling already and it is only the first week and no sports.
Today my son went outside with his biology class into the woods to dig up leaf litter. We are in one the counties with the highest incidences of lyme and they are doing this.
Posts: 834 | From Somewhere | Registered: Nov 2010
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Surprise, that's wonderful news about your daughter participating in PE after a lifetime of Lyme! It also sounds like a perfect combination of conditioning and exercise.
Terv, gosh I'm sorry to hear of your son's tiredness - that's what we'll be watching for as school starts up this week and I'm nervous. One thing that really helps DS with Lyme exhaustion (although it can be hard to time with all the other stuff) is activated charcoal. Has your DS tried that?
That's crazy the students are digging up leaf litter because you know they aren't properly protected as students. Ugh. Also, I replied above to your earlier post.
-------------------- Parent of teen with late stage Lyme, mycoplasma, bartonella and babesia. Dx Nov '15, in remission early to mid '18.
surprise
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posted
Thank you Terv and yancnyc!
I don't know how to write this next part, but as an adult in the aftermath of chronic Lyme disease,
one of the key 'things' for me is knowing/ learning how to take care of myself, despite what others think/ expectations.
Terv, I was thinking of your son having the courage to say no more basketball.
For me, it's having the courage to say no, I cannot volunteer at this school, or no, I am going to pass on a visit to draining relatives,
as mentioned earlier, it is a balance. Sure, I exercise, off Lyme meds, but, when I need to rest, I need to rest. My life is low key- it's good- but mellow. My daughter and I need down time.
Hope that makes sense.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Surprise, thanks for sharing your perspective as a long-time Lyme patient. It definitely does make sense and it's one of the main things I've encouraged for DS and I think I have DH on board with this too. It's more challenging in a way since neither of us has chronic Lyme.
Our kids/teens really have to learn to stay on top of things, especially when they are feeling better and really don't feel like acknowledging they may be relapsing. At least, that is what DS would do. He is a go-getter type when he's feeling well. I also think girls by nature are usually more in tune with their bodies due to the never-ending variations in hormones and thus may be less inclined to go into "denial" mode.
-------------------- Parent of teen with late stage Lyme, mycoplasma, bartonella and babesia. Dx Nov '15, in remission early to mid '18.
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