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Posted 2/24/2011 8:01 PM (GMT 0)
 

Hi folks,

Interested to know what people think about the importance of diet in fighting Lyme Disease. Obviously a general healthy balanced diet is vital, but I have read lots of posts saying to restrict (or entirely eliminate) sugar and even starch.

I feel that sugar and other carbs are vital for energy to get better. I seem to be relatively lucky with no thrush with Doxy so sugar doesn't seem to be a particular problem. In fact, I crave it and so have to ration it!!! I did cut it out completely for a while but felt awful - lethargic and headaches. Felt almost instantly better after returning to a normal diet.

Where do you all think???

Kirsty

Posted 2/24/2011 8:23 PM (GMT 0)
I think some carbs and sugar are okay but loads of it like candy, cookies, cake, soda are what is gonna really hurt you and feed the bacteria. I have just cut back on it again as I have always had a sweet tooth and while I know I will never give it up, I do feel better when I eat healthier and cut out the sweets. I never had any luck with atkins diet as I simply cannot give up carbs.
Posted 2/24/2011 9:00 PM (GMT 0)
I too have been wondering about sugar. I also wonder about vinegar. I eat salads every day and use olive oil and balsalmic vinegar. Is the vinegar a problem?
Posted 2/25/2011 9:09 PM (GMT 0)
You all have to realize it is not just feeding bacteria or yeast that is the problem. Simple sugar is also bad for people who are fighting with inflammation. Anyone here doing that? When you ingest simple sugars you put more stress on you adrenal glands. You adrenals are fighting a very important battle right now and they need all of their energy to go to that. Stressing your adrenals will also weaken you immune system. There are people on this forum that have adrenal insufficiency, adrenal fatigue and addisons disease that has likely been caused by lyme. If you need to ingest carbs, be smart, do it in very small doses, under 20grams at a time. Make sure you ingest some fat or protein with the carb to prevent it getting into your blood stream to quickly. Also try to eat complex carbs instead of white carbs. These will give you the same energy as the white carbs. The high fiber content helps to expel the build up of lyme toxins in the colon. This is also very important.

My husband and I both have lyme and we also have problems with our blood sugar. Lyme can mess up the way your endocrine system functions. This is what happened to us and it caused us to be hungry all the time and craving carbs. This is because our blood sugar levels weren't stable. We both had a form of hypoglycemia and insulin resistance. We had to change our diet and eat 5-6 small meals a day, high fiber foods, low glycemic foods, no more then 20gms of carbs at a meal, and no simple sugars. If you eat this way you won't be hungry for carbs anymore. It takes at least a week before you notice the change and the cravings going away. I can guarantee you that you probably have hypoglycemia of some kind that is causing you to be hungry for carbs all the time. You will pack on the lbs. if you are not careful. One thing we noticed is that when we started getting treatment with antibiotics, we started craving carbs again. Our lyme doctor said that the antibiotics can cause low blood sugar at times. We especially noticed it after having I.V. treatment. We always make sure we have a healthy snack after treatment to keep our blood sugar stable. For example almonds and an apple.

If you need help with a diet, you can e-mail me.

I hope this helps answer your question. Good Luck
Posted 2/26/2011 4:24 PM (GMT 0)
Good stuff, Donjoe.

Adrenal balance is lacking in LD sufferers and carbs must be kept to a minimum to avoid blood sugar rollercoaster effect.

And PLEASE seek out and consume high quality animal fats! Good for vitamin A, D and other stuff.

Fats have gotten a bad rap in our culture and we are so much the worse for it. Don't get me started on the bs around cholesterol and how fat is supposed to make you fat. Horse hockey! (sorry horsehelper!)

Herbert
Posted 2/27/2011 4:03 PM (GMT 0)
Our diet consists of high omega3 fats. We use extra virgin olive oil for all of our cooking and at times small amounts of butter. We also take high concentrated fish oil supplements. This type of supplement helps with inflammation in the body. We eat a lot of stir fried, steamed or raw veggies. We try to eat protein and carbs with every meal. The protein should always be 1/2 the amount of any carb intake. This means that taking in 20 grams of carbs with each meal you should have at least 10 grams of a protein. Fish, chicken, eggs, nuts and beans are our main form of protein. Our carbs consist of brown rice, wild rice, oatmeal, small amount of fruit with high fiber content, and whole wheat pasta in very small amounts. This diet has done wonders for our energy throughout the day. Other important things to address are caffeine and alcohol. These work you adrenals very hard and should be eliminated from your diet also. We mainly drink water, water with lemon and green tea. Sometimes we will have a cup of decaf coffee, no sugar as a treat but not often. I think the first way to fight lyme or any other illness is to help you adrenals be less stressed. We have both noticed that milk caused us a problem with our blood sugar balance as well. Milk products may also have to be eliminated, this is what we had to do. My husband and I both have problems with digestion and have use digestive enzymes. These will also relieve stress from the adrenals. Digestion is easier and they also promote energy because less time is spent digesting food. We have been doing this diet for over a year and it has helped tremendously with our recovery. It wouldn't hurt to also add an adrenal supplement to you list of daily supplements. Every little bit helps. Antibiotics can not fix the problem by themselves. You must help get your endocrine system into balance. This means all of your hormones in the body. Diet, mild exercise, and rest is the best for better heath.
Posted 2/27/2011 4:11 PM (GMT 0)
What or who has been your nutritional inspiration?
Posted 2/27/2011 4:52 PM (GMT 0)
Please be careful!! It's never safe to add adrenal support (or anything similar) without first seeing a practitioner & determining that there is a need to supplement.

My diet is just a well-rounded diet. I have tried several different diets and I really do best if I make sure I am eating a wide variety of foods & staying away from the big no-no's - fried foods, lots of prepared or instant types of foods, lots of bread & so on. This was an impossible task when I was really ill & hubby wasn't home, but we are now eating much healthier.

I can't have any sugar because it sets off horrid intestinal cramping for me. I have switched to Stevia to sweeten those things I must.

I find it interesting how varied Lymies diets are, each needing something a little different from the other. It really shows how we need to have a treatment that is uniquely our own.

Just my $.02 worth.
Posted 2/27/2011 7:03 PM (GMT 0)
Traveller, as we all have come to know, patients are sometimes poorly treated by the practitioners who think they have all the answers, the same applies to most of the docs who treat patients who have adrenal/thyroid issues. Been there, and been mis-dx'ed for years. Just like there is controversy and differing opinions in LD treatment, the adrenal/thyroid sufferers are called crazy, wrong, and hypochondriacs.

Having said that, I do NOT know all there is to know about adrenal supplementation with regards to LD sufferers. Do you know something about that could be important?

I have come from many years researching adr/thy stuff and heard very similar stories of mis dx'ing by the practitioners who claim to know it all. Altho I have found relief in what I have learned for myself, rarely have I gained anything from an Allopathic route. I can only speak of my experience, of course.

I wish I could have found a adr/thy doc who was savvy and wasn't a blind slave to incorrect lab tests. Just like LD, this is slowly changing and more and more patients are standing up with their research and demanding that it be a "clinical diagnosis" (a phrase I learned here!) and not told that they are "well" because the docs are not looking anywhere except one or two outmoded tests like the TSH (thyroid stimulating hormone, which, by the way, is a pituitary hormone).

I self-treat because of all the times when docs missed what was going on. YEARS!!!! SUFFERING!!!

I agree that in a world where integrative medicine is practiced, that would be the best course. But oftentimes I can't find a practitioner that knows more that I do and is willing to LISTEN.

Herbert
Posted 2/27/2011 7:41 PM (GMT 0)
I seem to be able to make people mad &/or offended when I ask for caution to be exercised - am I using the wrong words?

Actually, Old school, I am in the same position as you, I believe. I dxed myself with both thyroid & adrenal issues. I walked in to my gp & had to ask to have my thyroid tested & then had to completely lay out how I

came about my so-called 'theory' that I was hypothyroid!!! Then I had to practically talk him into 'letting' me try thyroid supplementation. It wasn't until I had significant improvements that he finally agreed that I had Hashi's.

We need to be careful not to diagnose anyone.There are people who have not done the reading & investigated their own health as much as you or I or a number of others here - and will just take some meds "because they read it was good for them". This is the reason I ask for caution.

Please,please[/] continue to contribute with your informative posts!!! I am just asking for caution - from all members, including myself!
Posted 2/28/2011 12:45 AM (GMT 0)
Oh no! I didn;t mean to imply anything like that at all! It's tough to convey my feeling about what you wrote thru just the written word. I really need to write better, or use those darn emoto-whatever-cons!

More later, dinner is on the table!

sincerely,
Herbert
Posted 2/28/2011 12:58 AM (GMT 0)
I've come to the conclusion that lyme makes us all over thinkers and worryers! LOL. Again, so glad I am not alone! LOL.
Posted 2/28/2011 3:36 PM (GMT 0)
Traveler - I think you are right to advise caution with self-diagnosis. Lyme can mimic so many other diseases, and treatment for this could make other things worse.

[I did pretty much self-diagnose Lyme, but then sought out an expert for a professional opinion. If they had suggested something else sensible I would have been happy with that too]
Posted 2/28/2011 4:24 PM (GMT 0)
Oldschool, you have asked what and who has been my nutritional inspiration. Well, I really don't know how to answer that question. There wasn't any one person or one article that I read. If you look up adrenal fatigue symptoms and you have all of them it only makes sense. My cortisol has been checked many times and it has come out high and low at times. My endo still believes that it is nothing to be concerned about.

My endo has checked my thyroid hormone and my husbands and it was always with in normal range. What made her suspicious about possible thyroid problems was the hypoglycemia my husband has and the reactive hypoglycemia I have. We both had a 3 hour glucose tolerance test with insulin draw and she found these problems along with insulin resistance.

Thyroid conditions can cause hypolglycemia and muscle pain like we have. She decided to give us thyroid hormone and put us on a very strict diet. I believe that the diet and thyroid medicine helped but it wasn't enough. It wasn't until we started taking antibiotics that we noticed our blood sugar was easier to control. When we started taking I.V. rocephin we noticed it gave us symptoms of low blood sugar. We have to make sure we eat a healthy snack right after treatment to prevent hypoglycemia.

Our endocrinologist told us that insulin resistance, hypoglycemia, adrenal problems, digestive problems and thyroid problems can all be caused by lyme disease.
I have done a lot of reading and found how all of our conditions are tied together.

This is why it is important to eat a low glycemic high fiber diet, stay away from simple sugars, take supplements that help support proper function of adrenals and blood sugar, get plenty of rest and mild exercise. Never over do the exercise because this will stress the adrenals also.

The adrenal supplement we started taking has vit A, Vit. C, Vit. E, Niacin, Vit. B6, Vit B12, Pantothenic acid, Siberian ginseng, rhodiola rosea root, schizandra berry, ashwaganda root, and licorice root in it. It is suppose to help prevent your adrenals from being over worked.
There is no adrenal hormones in this product. I would not take adrenal hormone supplements with out a doctors supervision.

Our bodies are so stressed and have been for a long time from lyme disease. Adrenal support to me is very important to help the body heal.
Posted 2/28/2011 4:45 PM (GMT 0)
Also there isn't anything I have told you to do that would be bad for you.

I don't know about any of your conditions or treatments but, I can tell you that my lyme doctor doesn't address adrenal, thyroid, blood sugar or possible vitamin deficiency like I would like him to. I have to see an endocrinologist to get this kind of support and I use Dr. Burr. treatment guidelines to help me.

If you have been in treatment for a while or have had relapses don't you think it could be possible that your immune system just can't handle taking over. If your adrenals are weak then your immune system is weak. You will never be able to fight lyme if your immune system is weak.

My body has been battling against getting rheumatoid arthritis. I was diagnosed over 2 years ago and told I would develop this condition because of my elevated r-factor. I haven't developed it yet and I am sure that what I have been doing is helping.

Good Luck to you all.
Posted 2/28/2011 5:46 PM (GMT 0)
Oldschool,
Whew!! I'm sorry for the misunderstanding - those are bound to happen, as you said - it's not always easy to communicate effectively without the aid of tone of voice & such.

I'm just happy that no one is mad!!!
Posted 3/1/2011 9:51 AM (GMT 0)
For a sweetner, I love Agave. I like that it's a liquid and it has a low glycemic index, doesn't cause blood sugar spikes like sugar or other sweetners. I've bought it at a health food store, grocery store and twice at TJMaxx.
Posted 3/1/2011 1:35 PM (GMT 0)
Denail, I have tried agave nectar and my body still knows its sugar. Before I started on I.V. treatment my bodies reaction to anything sugar caused me terrible pain. No doctor has been able to tell me why this happens. Shortly after ingesting sugar, agave, honey, fuit juice, fruit or even simple carbs my heart rate rises and then the all over body pain sets in. I still have this problem a little bit but it isn't nearly as bad. My one doctor thought it was my body releasing a certain hormone like adrenalin and because my nerves were so super sensitive it caused this pain. I also develop this pain when I first wake up in the morning or when I am in a stressful situation. Agave will still stress you adrenals and I wouldn't use it. Safer sweetener would be stevia.

One thing you should realize to with agave is that there is different grades. Not all is created equal when it comes to the glycemic chart.
Posted 3/1/2011 8:38 PM (GMT 0)
Traveller,
I have been dealing with adrenal/thy issues actively for the last decade and get passionate when I write about it. I was ignored/berated for so long that I guess it's a sore point. Again, sorry for my heavy handed aproach.

Donjoe,
If you have an endo that actually listens to you and seems to be putting you on the right track, count your blessings! I am a member of a ad/thy forum and countless sufferers write about endos that were so arrogant that they could not hear their patients' cries for help and understanding.

But! If your endo only relies on TSH test to dx your thyroid, you need to research more about that outdated, poor test that has caused much grief. And another red flag is prescribing synthetic thyroid for your care. "Synthroid", for instance, is a T4 only, patented drug that most patients have poor results from. Your blood test should INCLUDE "free T3" levels as this is the part of the hormone that actually gets in your cells and does the balancing. Just "T4" doesn't hack it.


I take Armour Thyroid, a dessicated pig thyroid drug that's been around for over a hundred years and so many people do better with it because it contains the T3 hormone as well as T4 and other constituents that give your body more of what it needs.

Did you get a 24 hour saliva test for your cortisol? A blood test gives you a snapshot of what's happening at that moment and you could be half way dawn or up to lousy levels. A 24 hr test provides a MUCH more complete picture and can reveal so much. Not to many docs know about this test, or, they dismiss it.

Here's a little history on me:
Mom was very sick and nearly died when she was pregnant with me and that disrupted my adrenal development. It's called "congenital hypoadrenocorticism" and I only discovered it had a name this past year. On my own, of course, no doc I ever went to had a clue! "All in my head", was the usual dx.

So yes, my immune system is weak. Always has been.

I eat mostly local or self-grown organic fruits and vegs, range-fed pastured milk and meats, take mostly mineral supps custom-tailored for me, lots of well water, don't vaccinate, eat processed foods, or other corporate foods or "health" strategies. I learn from The Weston Price Foundation's books and website, "The Doctor Within", and "Real Thyroid Help" websites.

Well, I've really blabbed on and on. Please pardon anything that comes across as too "know-it-all". I don't. But I have been looking for real answers for so long I have become very passionate about people taking control of the direction of our care.

Herbert
Posted 3/1/2011 10:03 PM (GMT 0)
Oldschool, my endo checks free t3 and free t4 along with TSH. She told me that my symptoms point to hypothyroid especially because I had inflammation of the thyroid. She wanted to get my TSH as low as possible so, she started me on Armour thyroid and increased the dose gradually. I requested Armour and she didn't have a problem with it. My TSH is at .5 and she won't go any lower than that. I probably still need more.
She is also treating my husband for hypothyroid with normal blood levels.

She doesn't believe saliva testing is valid even though my saliva cortisol testing came up showing high and low.
I also had saliva testing show I had low progesterone, low testosterone and low dhea. She checked all of my hormones and they were all normal.
I take prescription progesterone cream to help with my low progesterone.
I had a blood acth test done for my adrenals and cortisol testing which showed normal. I believe I have adrenal fatigue and am looking into seeing a naturopath for this.

My endocrinologist pointed us to a disease specialist because of all our similar health issues. This is how we found out we had lyme disease.

I found what you said about being born with adrenal issues and I have thought that this is what my son may have. I was also having health problems in my 7th - 9th month and though out my pregnancy. I had problems with anemia, digestion issues and gall bladder pain. My son had health issues from the time he was born. He is now 19 and I believe fighting adrenal fatigue or worse. Nothing ever shows up on blood work. I am going to look into this condition you have more closely.

How were you finally diagnosed with congenital hypoadrenocorticism?

Our endo is a good doctor and has helped us quite a bit. I find her to be more open minded then the usual endo but she still has her limitations. She also goes by the new TSH scale - .5 - 3.0.

I have read that if a person is fighting adrenal issues that it should be treated before the thyroid. Do you think this is correct? Have you ever read anything about reverse T3? Our endo doesn't believe in reverse t3 testing. Thank you for all of your input.
Posted 3/1/2011 11:04 PM (GMT 0)
Donjoe,
Your endo sounds like she's open to some workable strategies. Good for her! A rarity.

What saliva test did you do? What lab?

The ACTH test, well, here's a quote from the website below:

"If there is any suspicion of adrenal fatigue from doing the above steps, it’s time to do the 24 hour adrenal saliva test (requires no prescription, but is good to share with your doctor) rather than a one-time blood test (which fails to detect levels at four key times during the day) or a urine test (which fails to detect when it might be low since it’s simply an average of 24 hours), or an ACTH STIM test (which detects Addison’s or Cushings rather than the middle range of adrenal insufficiency)."

Great site!!! Changed my life!!!
http://www.stopthethyroidmadness.com/

I dx'ed myself after decades of research and taking a objective look at my life. My Mom was a twin and suffered from the a condition where one of the twins gets more of the nutrients and the other suffers. Her sub-normal temp, no eyebrows, fatigue, cold intolerance, chronic pain, spaced out mind, etc. along with my similar symps and I'm convinced of my dx.

Has your son had pyloric stenosis? That is a common malady for kids of adrenal insuf sufferers.
Posted 3/1/2011 11:35 PM (GMT 0)
I had estrogen, testosterone, progesterone, dhea and cortisol 4 times in a day done through ZRT saliva testing.

My son suffered the first 4 months of his life screaming in pain. The doctors told me it was colic. Every 4 hours he would scream. He even developed a herniated belly button from all the screaming. At 5 months he got his first ear infection with many to come. 14 months he had tubes put in. At 3 he was diagnosed with allergies and asthma. All growing up he would get infections of the chest and head. Never just a normal cold. He now suffers with itchy skin or possible dermatogarphism so doctors think, asthma, allergies, chronic fatigue, insomnia, insulin resistance, severe acne on his back, a pilodinal cyst, scoliosis, low vit. D (fixed with supplementation) digestion problems, lactose intolerance, blood work showed positive marker for glucose intolerance, aching hands at times, sores on the end of fingers that finally healed after taking doxy. and muscle tightness through out the body with very little exercise to cause it. His condition spells out adrenal fatigue. He had his testosterone checked with blood work at the same time my husband did and my son's is lower then my husbands. My husband is 45 and my son is 19.

How are you addressing the thyroid conditions? Did you find a doctor who would give you thyroid med. even though your levels were normal? My doc won't give me any more because my level is .5.

Do you also suffer with lyme disease?
Posted 3/4/2011 3:33 PM (GMT 0)
Donjoe,

Please pardon my slow response here. I've hired two men to come to my farm this week to do the things I should be doing but don't have enough energy to do. Even standing there running these guys absolutely wore me out and I crash at the end of the day and cannot confront a computer.

ZRT testing is a very good way to see what's going on. Well done!

My deepest, heartfelt empathy goes out to your son and your family. NO one should have to experience all that he has in this life. I wish him, and all of you, healing and comfort.

I found an "Armour" doc in my little town and jumped at the chance to try it and got an appointment. After ignoring and dismissing ALL my research and carefully recorded symptoms and charts of body temps, etc., he tries to give me Synthoid!!! "It's free", he says. I didn't go back and thru the above thyroid site found a way to get it online.

Same for treating my adrenals. I tried a 2 month course of hydrocortisone and found out how far down my health had dropped. WOW! In just a matter of days I could run and laugh and sing all because I had more of the hormones in my body to balance it and take away the pain. But that strategy cannot be sustained. Trying to duplicate what your body does on it's own is very hard to do well.

I think I have Lyme's, but after reading the intense suffering that others who have been dx'ed, I have a little doubt. My test came back "abnormally high" (Lyme IgG/IgM AB:  1.01  (abnormally high)
Lyme AB IgM by Western Blot:  IgM P23 AB:  Present) but from what I'm seeing, perhaps a more detailed test could tell me more. I'm not sure what that test(s) would be. I know it's a clinical dx, and I need to sit down and compare my symps to a list of LD symptoms. I almost don't want to.

Herbert
Posted 3/4/2011 8:01 PM (GMT 0)
oldschool, My doctor does PCR Western Blot of IgG and IgM. This is more accurate testing and gives percentages of what markers are showing up. The testing is only as good as the lab. I know my body is messed up from lyme disease and other bacteria. I have tried to figure out my health issues for that past few years with no help from doctors. I am still unsure sometimes if I am doing the correct thing by treating for lyme disease. I have to try something. I have some improvement but not as much as I would have hoped. It has only been one month on I.V. rocephin and I decided to give it another month. I don't have anything to loose at this point other then money. If you do have lyme and you wait it will leave you with permanent damage. My entire family is fighting a battle with insulin resistance and low thyroid. We may never be the same again. Our symptoms many years ago were never addressed the way they should have been. Don't wait to long. Set up an appt. with a lyme literate md and have proper testing done. Some lyme md's take insurance and some don't. I am currently seeing a lyme md that takes insurance and will treat our conditions with long term antibiotics. Insurance doesn't pay for everything but it is nice to have some treatment paid for.
I wish you the best.
Posted 3/4/2011 8:50 PM (GMT 0)
Donjoe said, "Also there isn't anything I have told you to do that would be bad for you."

My comment to this is one person's medicine is another's poison. Personally, I'd be ill on that supplement containing those herbs...I'm allergic to licorice root and many other things.

I do, however, agree with much of what has been said in this thread....thanks to all who have shared on this topic. I think my DH has reactive hypoglycemia secondary to adrenal insufficiency (which is secondary to long-term steroid use for his severe gastrointestinal allergic/inflammatory disease).

Also, I'm allergic to stevia...so if honey, sugar, agave, maple syrup, molasses & artificial sweeteners (I don't like the artifical sweeteners anyway) are out, what else is there to use as a sweetener? I can't use coconut sugar either (allergic to coconut).

Thanks,
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