posted
Sorry for ventilating here but honestly the more I try to study and be a 'self learner' regarding Lyme disease the more depressed and frustrated I've become.
I read a lot of what I CAN'T DO and CAN'T EAT but what I CAN DO and WHAT I CAN EAT (excl. veggies) are a mystery to me since there are so many contradicting opinions.
The 2 biggest frustrations....
1. Diet. I've roughly tried that Alkaline balanced Diet (meats bad except occasionally).
I don't feel good.
I'm losing too much weight too fast.
I'm already thin but my pants are practically falling off after 2 weeks on this diet and I'm always hungry after/in between meals.
I'm pretty sure this is the diet route my LLMD probably prefers.
So, don't know what to do: Dr. B's protocol, 'The Lyme Diet', Vegan , Alkaline Balance, fruits good or bad, etc., etc.
Each protocol seems to have it's researched evidence etc., which for a Newbie is overwhelming!!!
Number 2.
I just read that Aerobic excercise in NOT GOOD for you.
That was a big blow to me since the outdoors and Aerobic excercise is the only thing I've enjoyed lately.
I just rode my bike 25 k's yesterday.
I suspect I've had untreated Lyme for 30 years now.
I still haven't started any treatment.
For the last couple of weeks I've been running about 4 k's, 3-4 times a week.
I thought I was strenghing my body prior to going under Abx treatment.
It was also my way of not letting Lyme rob me of everything.
I just can't seem to find the balance in all of this.
Posts: 128 | From California | Registered: Apr 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
My Lord you sound so healthy,,,I bet they always say you look it to....
What kind of symptom's are you having?
I've read a few of your post and know you are feeling lonely and frustrated.
Somebody mentioned the Tick Slayer book, about somebody with a strong body/immune???
There's another book recently written by an athletic person.....
This can all be so confusing and many will follow with suggestions...
I hope your journey with this illness is short. Take care ..other's will follow, Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Ebtein Barr, very uncomfortable eyelid tension and freaky spasming of the upper and lower eyelids, orange coloration of upper eyelids...
generalized anxiety like symptoms, cold and clammy hands and feet..
winter depression, irratable bowel syndrome, cracking bones in neck and shoulders (started 2 years ago after a Chiro visit)...
Tinitus, Hyperacusis, recent swollen tongue, brain fog, problems finding words at times, slight tendenitis in the knees...
When I do sports though I feel relatively strong.
In fact sometimes I feel better doing sports than my daily routine activities.
I wonder how much a strong/er body plays with Bb?
Most of my symptoms look more neuro/psych..
Besides some knees problems that I've always overcome I've never had any debilitating joint or muscle pain( Thank God).
Posts: 128 | From California | Registered: Apr 2012
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Not able to read your post today but really liked the title.
It would be a great title for a blog.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Talk to YOUR LLMD about YOUR treatment path. It will be designed specifically for YOUR body.
The caution against aerobic exercise, is that, WITH INFECTION:
* the heart can be damaged with aerobics, as can
* the entire endocrine (adrenal) system if there is a rebound exhaustion after exertion.
* the liver also take a hit with exercise that involves toxicty. The liver can only process so much at a time. Hard exercise can overload the liver.
* those with mitochondria problems can be more affected by aerobics.
If you can do all that and not be tired or feel ill, that's fabulous. But, you report some pretty harsh symptoms so it's best for your LLMD to sort this all out, in light of your current abilities and what treatment you will be on.
YOU may well be able to do some of the activities you enjoy. My guess is that, since you feel better with it -- as long as you feel better afterward and the next day -- you'll be able to continue in a similar fashion.
You just need to be cleared for that and have the proper support in place.
If you have to alter that, believe me, exercise is still strongly encouraged, it just might be different for a while but you sound like a lucky one on that area. Don't pack up all your gear.
Again, it mostly depends on what your LLMD says about YOUR case but I would bet that you'll be able to still enjoy much, even if slowing down a bit. Support methods are still a good idea. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned a vegan diet. No where "officially" have I seen that suggested for lyme patients.
In fact, you may need more protein than that could provide. While plants do contain protein, muscles meats and fish do contain some unique nutrients.
If you go vegan, you will need to supplement: B-12; TAURINE; CLA, etc.
I was vegetarian for 18 years and I had to start eating eggs, fish and meat again. I really needed those for MY body and brain.
Many find they really need more, not less but only from organic (or close to organic) quality.
Grass fed and free ranging animals, WILD fish, is best.
Of course, MOST of the diet should be VEGGIES.
Fruits? If you have candida, be very careful. When on abx, candida can happen and then be terrible to try to clear. Best to avoid it.
Probiotics, Olive Leaf Extract, Allicin, certian antifungal Rx, and a diet of nearly NO SIMPLE SUGARS will help.
Certain fruits may work okay, best after a meal. Low sugar DARK BERRIES or tart apples.
But, if you do develop candida, you may not be able to "do" fruit. You may. It just depends on the person and the support methods.
FATS - be sure you get enough good fats. NUTS, avocado, etc.
There is no need to feel deprived but many do have to do a major shift in their food plan. Still, with all the garden herbs, dried herbs and spices -- all the veggies in the world, etc. there is no need to feel deprived.
GLUTEN is best avoided, though. There are very good non-gluten WHOLE GRAINS like
Millet; Quinoa; brown, red, black, wild rices; Amaranth and whole buckwheat groats. Just not flours. Whole matters.
But, once in a while, a brown rice pasta PENNE can be very nice - along with lots of veggies.
Lots of veggies is the theme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTIONS
Indian J Med Res 124, August 2006, pp 129-148
- by Anura V. Kurpad
Fifteen pages of text.
Excerpt from abstract on page one:
. . . In general, the amount of extra protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . .
[note: see what author states about lysine supplementation appearing to help immune function.] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You need to find what works best for YOU. Since you will be going on long term antibioitics, I would suggest a diet that will help you avoid candida/yeast.
It can be a BIG stumbling block to getting well if you get it... and it can hang on for years and years after treating Lyme.
I eat low carb, no sugar, no fruit, no gluten. It is what I have to do in order to keep the yeast in check. I'm not sure I am a celiac, but I probably am. (long story)
Eat plenty of vegetables!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I heard that approx. 85% of Lyme patients gain weight and about 15% lose weight. You may be in that second category.
We are all different and you need to do what's right for your body. I believe there is a protocol that you should be doing if you're losing weight, but I'm not a Lyme doctor and I don't know it.
Re exercise, also, each of us can do what we can do to tolerance. I do walking and swimming to my capacity. When I get tired, I rest.
It is good for us to have circulation, for the sake of nutrients in, waste products out, and good lymph circulation.
Posts: 13116 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You said, "I'm always hungry after/in between meals."
I don't think you're getting enough fat in your diet. If you are losing alot of weight, you may be losing muscle mass in addition to fat.
From your description, you are exercising alot, which means your muscles need protein to repair. How much protein are you getting daily?
A bunch of your symptoms sound like magnesium deficiency: spasming of the upper and lower eyelids, generalized anxiety like symptoms, depression Tinitus, Hyperacusis, slight tendenitis in the knees...
Irritable bowel syndrome may be due to hypercoagulation, which happens with Lyme due to elevated fibrin. Systemic enzymes can reduce the fibrin.
Each person who is giving you advice is working from their own experience. So yes, often it will conflict.
In my experience, you can relieve a number of your symptoms with vitamins, minerals, omega 3's, systemic enzymes. If you can relieve your symptoms, you may not need to subject your body to the long term antibiotics.
Look into hyaluronic acid for your knees. The reviews for this at iHerb.com are excellent.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Appreciate the support I'm getting here:)Thank you!
Posts: 128 | From California | Registered: Apr 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Fred, I totally understand what you mean. I have found such contradictory advice on what you are supposed to do and what you should not.
I also felt better exercising and for the past 25 years, had gotten some type of aerobic exercise every morning. (I think this is why I had such a good immune system which hid Lyme from me for a number of years).
I tried to follow Dr. B's guidelines for exercise and felt worse after giving up my regimen. I have started reducing my aerobic (low impact) to every other day and have tried to increase the resistance training to meet the recommendations half way... This seems to be working for me.
Re: diet. I will probably get a lot of negative feedback on this, but I was absolutely miserable on the gluten free diet. Eating is one of the few joys in life that I still have.
Instead of going gluten free, I have tried to reduce the amount of gluten and carbs in my diet while continuing to eat many vegetables/salads/soups/nuts/hummus/beans/chicken and fish. I still enjoy feta cheese and I have my own home made kefir every day. I would find it way too hard to give up dairy as many recommend.
My diet has been Mediterranean for years (this is almost vegetarian, with lots of healthy whole grains, vegetables and fruit with healthy oils and some dairy with chicken and fish a few times a week). I also think my past healthy diet probably kept my immune system up and kept lyme bacteria at bay for all those years I had without knowing...
I have modified this healthy diet by not having so many carbs, but I still enjoy some things that are forbidden like air popped popcorn and whole wheat crackers or toast with hummus - all in moderation.
I have lost my taste for a lot of the things that I used to enjoy since starting ABX, which may be my body's way of telling me what I need and don't need. God bless all of you out there who have been strong enough to follow the strict lyme diet.
The main thing is to follow your instincts to do what makes you feel better and able to tolerate these awful meds that you need to fight this disease. God bless.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
And as someone mentioned, lots of different advice here - milk doesn't bother me at all - maybe it's genetic differences we've got. Again, I say listen to your body's response to everything you do.
Posts: 13116 | From San Francisco | Registered: May 2006
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
fredO,, It's amazing and their both right..In one of my med post ..milk and other food is brought up that I thought we had to stay away from.
..Yet some here have gotten well without this, not all.
Keebler and Robin are very knowledgeable about this illness and I know you are new and probably getting a bit scarred...
There's so many thing's involved with this illness as are with others.
Lot's of help here and of course talk with your LLMD....
I've tried a bit of varied eating patterns and some just put in whatever is there!!
I know coffee stuffs me up and makes my joints ache , mostly hands ...UNLESS it's Italian..Expresso made just like in Italy...for me decaf. Unless in Italy...There are reasons for that ,,,but that is not of importance to you right now..
This is a HUGE bummer to be going through this ...and you want to do whatever you can to make it go away...
Unless you find some magic solution, it is a learning process and a WAR!!!!!!!!!!!!!!!!!
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I understand what you are saying.
I have been at this for close to 10 years and finally getting better under the care of a well known LLMD.
I am back to running and biking - did a couple of high mileage weeks with no problem. I also love biking - triathlete and duathlete..I am back to 75% of my exercise capacity in terms of duration and intensity. I started off at about 25%, but ALWAYS did some form of cardio and ALWAYS felt worse when I did nothing. But that is just me.
Anyway, what I have found is that, for me, there needs to be some level of indiviuality in terms of the peripherals of treatment.
I do things that most would say not to do and eat some thing i should not. I know what my body can and cannot tolerate, I know what is good for my own constitution and what is not.
I had to start adding things back to my diet as I was losing too much weight.
I think you need to pay attention not just to recommendations by LLMD's but also to cues that your body is giving you.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I agree with this. It robs you of everything.
Do you get post exertional "crashing"? Do you feel worse after exercising.
I know you have to listen to your doctor, but if you can tolerate exercise I think it must be good for you.
I tried to bully my way through this by ramping up exercise a few times, only to crash.
I can't tolerate running or biking anymore, both of which I love. I crash very hard after these.
You need to find what works for you and what makes you feel well. Exercise is important so I feel like if you can tolerate then you are miles ahead of many of us....
Hope you feel better soon!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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