posted
Hi all! I'm a total newbie to lyme disease - although I suspect that I've had it for a long time, I only received a diagnosis (from Igenex) this Tuesday, and it was quite a surprise. However after doing research online and reading a lot on this forum it seems that my symptoms definitely fit. I experience a lot of fatigue and terrible gastro symptoms, as well as pain all over my body. I have been following a strict diet for the past two years that restricts gluten, dairy, eggs, soy, nuts, and many other things that came up as intolerable foods on an igg test awhile back, and while it helps the gastro pain to avoid them I still always experience pain on a daily basis. I tried a very strict low carb diet last fall (the Specific Carbohydrate Diet) for 4 months and felt no different - except more fatigued.
I'm therefore wondering about the protocol that Dr B suggests in his guidelines regarding diet for yeast in the intestinal tract. It looks very similar to the diet I tried, so I'm wondering how many of you are on it, how long you've been on it for, and whether or not you feel better while you're on it! Is this a permanent thing, or is it a temporary diet that you go on while you are healing (while taking antibiotics or natural treatments)? If temporary, how long do you need to be on the diet for healing to occur?
Thanks so much for any input!
Posts: 24 | From Toronto, ON | Registered: Jan 2012
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TF
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posted
Breaking up post so all can read it:
Hi all! I'm a total newbie to lyme disease - although I suspect that I've had it for a long time, I only received a diagnosis (from Igenex) this Tuesday, and it was quite a surprise.
However after doing research online and reading a lot on this forum it seems that my symptoms definitely fit. I experience a lot of fatigue and terrible gastro symptoms, as well as pain all over my body.
I have been following a strict diet for the past two years that restricts gluten, dairy, eggs, soy, nuts, and many other things that came up as intolerable foods on an igg test awhile back,
and while it helps the gastro pain to avoid them I still always experience pain on a daily basis.
I tried a very strict low carb diet last fall (the Specific Carbohydrate Diet) for 4 months and felt no different - except more fatigued.
I'm therefore wondering about the protocol that Dr B suggests in his guidelines regarding diet for yeast in the intestinal tract.
It looks very similar to the diet I tried, so I'm wondering how many of you are on it, how long you've been on it for, and whether or not you feel better while you're on it!
Is this a permanent thing, or is it a temporary diet that you go on while you are healing (while taking antibiotics or natural treatments)?
If temporary, how long do you need to be on the diet for healing to occur?
Thanks so much for any input!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Catgirl
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posted
Hi reflect, welcome to lymenet.
I had terrible gastro symptoms (GERD). It was bartonella (came with the lyme). Yes, Dr. B's diet helps me tremendously because I'm on antibiotics.
I developed yeast within two weeks of being on abx. Unfortunately, my doc only told me to take about 32 million probiotics a day. That was way too little, so I developed yeast. And once the yeast beast came, it's been an uphill battle ever since.
So, I eat his anti candida diet. He does allow dairy eggs nuts and though, but if you can't eat them, just focus on what you can. I've been on his diet for 8 months. It does help because you have to get a handle on yeast or you won't improve.
Everyone is different. Some people don't have anywhere near the problem I've had with yeast. Others are in the same boat as I am. My advice, take LOTs of probiotics. At least 100 billion per day.
Also, I would seriously follow his protocol to the T for everything.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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TF
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I got rid of lyme disease and its coinfections almost 7 years ago now. I followed the Burrascano diet while I was being treated for these diseases.
Now that I am no longer in treatment, I eat a regular diet. The burrascano diet is simply to keep from getting yeast in the intestines from the high-dose combinations of antibiotics that Burrascano expects the patient to take.
The high doses and combinations of antibiotics that he prescribes kill all the natural gut flora. That is what causes the need for the special diet.
So, the diet doesn't make the patient feel better. The diet just helps avoid getting yeast which makes the patient feel worse than they felt with just lyme alone.
I got yeast a few times while treating lyme. I got it any time I broke the diet. I had to stay strictly away from sugar, bread, etc. These feed yeast.
Once I was done with treatment, my doc had me stay on the diet for 30 more days while he restored my gut. This made sure I had no yeast and that my natural gut flora was now back in place.
So, the fact that you are not on antibiotics and yet you have daily gut pain indicates that you likely have bartonella. This is a common coinfection with lyme.
I had bartonella along with my lyme and I experienced a LOT of gut pain. I had colonoscopies because the gastroenterologist was trying to figure out the cause of all of my terrible pain. He never found anything.
Finally, I got diagnosed with lyme, babesiosis, and bartonella. My gut pain went away when I got good treatment for my diseases.
This is what I expect will also happen for you.
The other possible causes of daily gut pain are yeast infection and gluten intolerance.
Many people who have lyme are also gluten intolerant. If you are gluten intolerant, you have to be very, very careful not to have gluten--not even a tiny bit.
You can do a search on LymeNet for past posts where people talked about the gluten-free way of eating and discuss hidden sources of gluten and gluten contamination of non-gluten foods.
Just hit "search" near the top of the page and type in the word "gluten" in your search and see what you can find.
The symptoms of yeast in the intestinal tract are generally terrible bloating, continual abdominal pain, gas, and a white coating on the tongue.
Check the tongue as soon as you wake up in the morning. If you have yeast, it starts on the tongue and goes into the gut with each swallow.
If your tongue is not white coated, then yeast is almost certainly not your problem.
Regarding bartonella, here is a quote from page 24 of Burrascano:
"Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore."
Notice that one bartonella symptom is gastritis. Do you have any of the other bartonella symptoms?
If you carefully avoid gluten and still have daily abdominal pain, I would be certain that bart is the cause. I have known many lyme patients that suffer terrible gut pain, and they all have bart, just like I did.
Gut pain is classic bart.
I hope you know that the doctor is the key to getting rid of lyme disease. Can't stress that enough. The doc is the key.
Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
If you get with a good lyme doc, he may treat you for lyme and bart simultaneously right off the bat. With good bart treatment, I expect your gut pain will go away.
I suffered with it and I know how terrible it can be. I hope you can get in with a good lyme doc soon.
The wait to see a good lyme doc is usually quite long. So, while you are waiting for your good lyme doc, contact the lyme support groups (see "Support Groups" on left side of page) and ask if there are any "lyme friendly" doctors nearby that you can see quickly.
That is what we often have to do while we wait for a good lyme doc. A lyme friendly doctor is willing to give a lyme patient meds for an extended period of time, but doesn't really specialize in lyme treatment. So, they don't know enough to provide great treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF what killed your bartonella? Mine seems to be very resistant and survived 6 years of atb including doxy, zith and rifa. Posts: 125 | From eu | Registered: Dec 2010
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TF
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posted
Lala, I got rid of bart by taking levaquin.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Catgirl: Thanks for the info! Is there somewhere I can find a detailed list of allowed/not-allowed foods on this diet? I read Dr B's 2008 guidelines but I'm not certain about a lot of things.
TF: Thank you so much... I definitely have a lot of the symptoms of Bartonella. Your post has really opened my eyes - for years I thought the red marks I had on my body were stretch marks! Thanks for the info about the diet. How long were you on the antibiotics for?
Posts: 24 | From Toronto, ON | Registered: Jan 2012
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TF
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I took levaquin for 30 days. Then, my doc moved on to treat babesiosis with Bactrim DS. (Bactrim also kills bart.) I took the Bactim for 11 months--5 months past my symptom-free point.
They don't want us giving dosages on the public board. Anyone who wants dosages can send me a private message.
I treated lyme and company for over 3 years. The first 2 years were wasted with a lousy doctor who only treated me for lyme and that with only one medication. When I got to my final doctor, he got rid of my lyme, bart, and babs in 13 months total.
I had had these diseases undiagnosed for at least 10 years.
This is why I stay on this board. To put out the message that the doc is the key to getting rid of this disease folks. You can waste years with inferior doctors. If at all possible, I suggest you get to a top doc (who will not take insurance) and get your disease knocked out.
Regarding the Burrascano diet, there is no list of OK foods that I know of. And, I have been into this for at least 9 years.
To simplify things, just eat meat and non-starchy vegetables. (Starchy vegetables are potatoes, corn, and beans that are legumes. Green beans and wax beans are not legumes. You can have them. All other beans are legumes.) You can't have anything made from potatoes or corn or legumes.
You can't have any sugar or flour or grains (rice, oats, cereals of all kinds, etc.) Since pasta is made from flour, you can't have it.
You can't have anything with sugar or flour as an ingredient. So, no barbeque sauce, no cakes or cookies or pies, no pancakes, no ketchup, etc.
You can't have any fruits (because of fruit sugar) except lemons and limes. (You can try a green apple at the end of a meal or a few berries. That is it.)
If I didn't say you can't have it, then you can have it. So, you can have oil, vinegar, butter, mayo, spices, etc.
You can eat eggs and dairy (cheese, milk) and tree nuts (not peanuts because they are legumes) and seeds. Quoina is a seed, so you can have it. You can make porridge from quoina flakes for breakfast. The recipe is here:
While treating these diseases, I ate this porridge daily for breakfast. Make a big batch and heat up a serving as needed in the microwave. Had an egg and bacon on occasion.
All I ate for the other meals were meat and non-starchy vegetables (which is an awful lot of vegetables). All I drank was water with lemons squeezed into it. My doc said to eat 4 lemons per day to detoxify and to drink lots of water.
Name the foods you have questions about and I will tell you if they are allowed and why/why not.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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Of course, you also cannot have any alcohol. That is pure sugar. Not only will it give you yeast, but you cannot recover from these diseases if you drink or smoke. No exceptions. See it in Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks, TF! This sounds almost identical to the diet I was on previously. Did your doctor mention anything about limiting vegetables with high levels of fructose?
Posts: 24 | From Toronto, ON | Registered: Jan 2012
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TF
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Which vegetables are these?
Posts: 9931 | From Maryland | Registered: Dec 2007
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Catgirl
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Reflect, we are all different. I am EXTREMELY sensitive to yeast. I've had to journal everything I ate or put on my skin to find out what gave me yeast. It's taken me a long time to figure this out. Some people are not as sensitive as I am though (hopefully you will fall in this category).
I can't have ham or bacon (has sugar--read the package). We are also not supposed to have nitrates anyway (some bacon and ham). I also cannot have carrots (sugar content). I also cannot have regular vinegar (just apple cider vinegar).
I cannot have shampoos, or lotions with any form of fruit or sugar. I cannot have toothpaste with xyletol in it either. I also cannot use Listerine (caramel).
I basically live on the porridge recipe that TF provided above (except, I can't have the stevia). I have two giant bowls of that a day along with the rest of what Burrascano says we can have.
It is also really important to make sure you are getting nutrients in you that your diet is lacking in. I finally got a clue and started supplementing with the majority of vitamins/minerals in Dr. B's protocol (and added more). They definitely make me feel better. But be careful because many of them have starches and hidden sugars (learned the hard way).
We are so fortunate that TF has hung around and still continues to help us through Lyme and company. Thank you TF!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Some vegetables with "high" fructose (compared to other vegetables) are onion, squash, kale, asparagus, peppers, cabbage, carrots, and brussel sprouts. These are usually avoided by people who can't tolerate fructose. I'm not sure how much the level of fructose in them would feed a yeast overgrowth.
Thanks, Catgirl! Sounds like I was doing the same diet before except I ate gluten-free oatmeal twice a day instead of quinoa. I have been feeling very ill lately now that I'm off it and eating more sugars, so I will try it again and use quinoa this time instead. Never tried quinoa before so I will do this tonight! Thanks again for all your help.
Posts: 24 | From Toronto, ON | Registered: Jan 2012
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TF
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These vegetables should all be fine. However, beets and cooked carrots may bother some folks, so you would want to not overeat either of those.
Posts: 9931 | From Maryland | Registered: Dec 2007
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i was just thinking that I do not understand why NO ONE seems to have GI problems as bad as I do.
For me its horrible and totally non-responsive. I have don't SCD and have basically been on a modified SCD/ Paleo type diet and haven't had much relief.
I think for me it will prob be the last symptom to go :-/
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