I wanted to post this because I see some confusing issues here. I'll post my comments below.
Dr. B's Treatment Guidelines (2008)
Sections regarding self-care:
From page 27:
CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired.
2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps.
3. Absolutely no alcohol!
4. No smoking at all.
5. Aggressive exercises are required and should be initiated as soon as possible.
6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and
carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index.
7. Certain key nutritional supplements should be added.
8. COMPLIANCE!
*********
He says to not get behind in sleep. Does anyone find it matters the time they go to sleep or more the amount of sleep? I tend to get 8 hours a night, sometimes I am in bed by 10 and sometimes by 11 depending on the day. Matter?
No caffeine? I have one cup or a double shot of espresso in the morning which has less caffeine than coffee and seem fine all day and night. My LLMD is fine with this and does not limit patients other than to not have more than one or two cups in the morning....just not all day! I actually alternate and do decaf some mornings.
Low in fat???? What if you are on Mepron? With this you need generous amounts of fat for absorption. Now, I use good fats....but still, what does he mean?
No simple carbohydrates. This is obvious, but what about the rare cheat? I do very well here, but for example, for Halloween tomorrow we are having dinner at a friend's house before taking the kids out. We are having pasta. I know they will be making white pasta. Ugh.
Thoughts?
Posted by Tincup (Member # 5829) on :
Heaven knows I do love Dr. B... I do, I do, I do.
BUT..
If anyone can follow ALL of those rules to a T.... and not mess up...
They would be no less than a Saint.
If I wanted to be persnickety...
I would say Dr. B doesn't have any documentation to back up his theories there.
BUT..
He is trying to HELP you.. and has YOUR best interests at heart...
So do try to follow the suggestions as you can... and adjust them to fit your circumstances when needed.
Remember... MODERATION is the key!
Posted by Lymeorsomething (Member # 16359) on :
I definitely break many of Dr. B's commandments. Maybe that's why I'm still here
I find too much sleep is bad for me as well. Others have said this may trigger a greater immune response. If I go to bed too late that affects me negatively as well.
I drink about 8-9 cups of black tea per day so no caffeine-free compliance to say the least. I think it's the only thing that lets me work f/t though Posted by richedie (Member # 14689) on :
Lymeorsomething, you really should try to keep the caffeine to the morning and then do filtered water all day. That is what I do. Caffeine is hell on your adrenals!
Posted by Abxnomore (Member # 18936) on :
Caffeine is also hell on an inflamed over stimulated CNS!
Posted by Marnie (Member # 773) on :
There is a TON of backup information that is going into his suggestions. He is trying to simplify it for you.
The fatty acids are out of balance...Omega 6 intake is way too high and this is helping Bb out as does "sugar"...NOT complex carbs which do NOT trigger insulin spikes.
I've been trying to tell you...
Posted by canefan17 (Member # 22149) on :
Just follow the guidelines.
I make sure to follow it to a T.
The sleep part is tough sometimes... but I'm doing everything I can do get it worked out.
Dr B knows his ish. He sees the trends in patients who are recovering and knows that the majority of those patients follow the guidelines and sleep well.
Posted by Lymeorsomething (Member # 16359) on :
Yes, you are right. I should stay off the caffeine. I suspect that I would crash hard without it if I went cold turkey though. Tea has some redeeming properties as well.
Maybe I'll try a slow wean in the near future.
Posted by JamesNYC (Member # 15793) on :
Uhhh, well, Oh boy,
I am NOT good at following his guidelines!
Caffeine is what allowed me to function through my lyme brain-fog and fatigue episodes for the last 26 years of lyme. I would also sleep a lot, but it was the caffeine that kept me from being useless. I took lots of NoDoz and Vivarin.
I've always eaten normally with no avoidance of simple carbs. I have watched out for fat, but with Mepron, I've had to quadruple my fat intake.
(Although I have my doubts as to why we think mepron needs fat. The insert says that a 610kcal, 23g fat meal was better at absorption than fasting. So why specifically fat as opposed to a meal in general?)
I try to get about 7.5 to 8 hours of sleep. But I frequently have to go with 5 hours due to insomnia (maybe from babs?). And sometimes I just stay up too late! On the other hand, when I have lyme fatigue episodes I sleep all the time anyway.
I never smoked or drank alcohol.
I always weight lifted. But I also did aerobic high milage running until babs entered the picture.
So with all these violations of Dr B's guidelines, I still have gotten MUCH better. Over all this time it never progressed to the point of debilitation.
My brother has gotten MUCH better and he was really bad. He follows no special diet, smokes (yuck) and was too debilitated to exercise.
So, what is the lesson? I guess INDIVIDUAL RESULTS MAY VARY!
I'm not saying that the guidelines shouldn't be followed, just that maybe we shouldn't stress too much if we can't. It may not make a difference at all for some people.
Anyway, again, just my experience.
James
Posted by massman (Member # 18116) on :
Good points James. What works for one may or may not work for others. Follow your intuition about you.
Posted by JamesNYC (Member # 15793) on :
I just realized that as I was writing the proceeding post, I was eating a cider donut and drinking coffee!! And now I'm going to work out an then run!!
I am SUCH a naughty boy!!! Posted by jennie46 (Member # 20953) on :
James,
Do you take anything to avoid yeast while eating a normal diet?
I have been eating a normal diet for the past 4 months, but it is catching up with me. I am now battling yeast...yuk!
Thanks, Jen
Posted by JamesNYC (Member # 15793) on :
Jennie,
Yes, I take acidophilis pills, 4 a day (1 billion+ active culture). I also eat yogurt occasionally.
How do you know you're having a yeast problem?
James
Posted by richedie (Member # 14689) on :
"The fatty acids are out of balance...Omega 6 intake is way too high and this is helping Bb out?"
How do you know my fats are out of balance...I didn't say what I eat. I have to eat extra fat for the mepron absorption. I eat avacodos, peanut butter, seeds, nuts, eggs, etc while taking mepron.
Normally I eat much less fat.
I try to sleep 8 hours a night but it varies when I go to sleep and pain can wake me up!
I am not sure haing one cup of coffee in the morning is an issue. He used to say no coffee, now he says no caffeind. Coffee is still acidic.
Posted by Marnie (Member # 773) on :
The typical American diet is skewed too far towards the Omega 6s.
Bb uses AA and incorporates it into its lipoproteins.
AA =
arachidonic acid = -a long-chain fatty acid that is a component of lecithin and a basic material in the biosynthesis of some prostaglandins. In mammals, arachidonic acid is synthesized from linoleic acid.
Linoleic acid (LA) is an unsaturated omega-6 fatty acid.
The RIGHT fatty acids are critical.
Very specifically E-EPA (an omega 3) and caprylic acid are CRITICAL!!! Caprylic acid is in virgin coconut oil...which contains SATURATED (loaded with hydrogen) medium chain fatty acids...several of them that all work TOGETHER.
Posted by riverpatrol (Member # 12182) on :
The rule about caffeine states: "2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps."
So the way I read this is that he isn't saying to totally avoid caffeine, but to avoid stimulants that would affect your sleep. That tells me that coffee in the morning is okay. I actually find that coffee in the morning will help reduce the pain of a herx. Go figure...
Posted by richedie (Member # 14689) on :
If my stamina is good.......do yuo think it is good to exercise most days and maybe only taking a few days off? I am trying to at least walk each day and weights some days, sprints, etc. OR...do I follow the guidelines closely!
Posted by Keebler (Member # 12673) on :
- As far as how hard the guidelines are to follow - if helps if I look at it as being much easier to follow the guidelines than being sick forever.
There are other ways to reduce herx because, sorry to say, I think he really means no caffeine - for various reasons beyond sleep. Caffeine revs the adrenals which are just so damaged from lyme.
Stinging Nettle is one herb that helps reduce the cytokine storm of a herx. Curcumin, too, can be very helpful at reducing inflammation while also producing some calming for the endocrine system.
Other things that help are listed in the Nutritional Supplement part.
Aerobics are not allowed until a patient is much better. Sprints fall into that category and can be very stressful. Walking can have amazingly good benefits. Bouncing very gently on a mini-trampoline can also be helpful.
Also to note, while healing, never exercise two days in a row, according to Dr. B. There should always be a rest day in between.
Gentle movement or stretching routines like Tai Chi, QiGong or Yoga can be done daily - but not full exercise routines that require more effort and stress on the body (even though they not aerobic). You can find explanations and specific guidelines for rest/exercise routines here:
. . . However, attention must be paid to all treatment modalities for such a recovery - not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
Page 27:
SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES
Pages 31 - 32:
LYME DISEASE REHABILITATION and REHAB-PHYSICAL THERAPY PRESCRIPTION
. . . . -
[ 11-06-2009, 05:29 PM: Message edited by: Keebler ]
Posted by richedie (Member # 14689) on :
Sooooo, how do you know when you are good enough for more exercise or aerobic exercise? I did intervals on a bike yesterday so today I am going to just stretch and do the dry sauna. I'll do light to med weights on Sunday.
I have no stamina or fatigue issues. My issues these days are all pain related.
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