posted
Hi. Just started taking abx (Biaxin and then Plaquenil) and feeling quite overwhelmed by all this. I have not got my western blot results back yet, but LLMD I met (based on my symptoms and fact that I have pulled 3 ticks from my body in past 1.5 yrs and had bulls eye in June 04) pretty sure I have lyme. anyway ... can someone help me as i'm feeling overwhelmed w/all this ->
1. Yeast free diet? I've looked up stuff on internet for yeast free foods but does someone have recommendations for actual breakfast, lunch, snacks, dinner examples that maybe I could follow?
2. taking abx w/vitamins? My LLMD gave me a schedule of what to take but I've also read you shouldn't take vitamins (magnesium, milk thistle, etc) w/in 2 hours of abx -> is this true?
3. drinks? no alcohol is tuff, but even tuffer is no juice or soda -> what do you drink on yeast free diet?
4. I've only been on abx for 2 days, but seems like i feel a helluva worse -> pain, twitches, on edge. I don't think this is "herx" but do you usually start feeling worse once you start taking abx?
5. exercise? some days I have felt good enuff to go for a run, but should I do this even if i'm up to it or does it further complicate the symptoms (pain)?
Posts: 31 | From CT | Registered: Mar 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I hope this helps.
1. Yeast free diet?
One of the best resources I've found is the book the Yeast Connection by William Crook. He also has a book called the Yeast Connection Cookbook.
My breakfast and snacks included eggs, sliced vegetables, low-sugar fruits like pears and berries but only with protein, chicken cutlets. A george forman grill can come in very handy.
2. taking abx w/vitamins?
A lot of minerals can bind with abx. Also, calcium and magnesium can bind and shouldn't be taken together. If your LLMD gave you a schedule, then I wouldn't change it without talking to him/her. Timing can be difficult and many of us do our best.
3. drinks?
Water and sparkling water. You get used to it pretty quickly. I never gave up coffee or tea either.
4. I've only been on abx for 2 days,
I find increased symptoms anywhere from 24 to 72 hours after starting a new abx.
5. exercise?
Have you read all the newbie links at the top? OK, have you glanced at them? I don't think I ever read all of them. But Dr. B's guidelines are a must, and he recommends not doing cardio work at the beginning stages of treatment. I did find I got very lightheaded and nauseous with cardio.
I really just do yoga now, that has some cardio but not as intense. But listen to your body. You may have to do a lot less than you used to, and that's ok. But I find it is very important to keep moving if you can.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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First, I wanted to say that I understand feeling overwhelmed as a newbie -- I'm just getting to the point myself where I sort-of know what works for me. It does get better, I promise.
The following is JUST MY OPINION -- I'm not a doctor, just a patient.
Yeast-free diet -- yes,yes, and yes. It will really make you feel better, and is pretty imperative when doing so many abx. I do it to the best of my ability, but I also don't freak out if I need to eat one "normal" meal here and there -- say, if I am going to someone's house for dinner, or whatnot. I know this is a long-haul as far as treatment is concerned, so I have to make sure that I have the best quality of life possible -- it makes it a lot easier to cope with. Make sure you are doing probiotics, and also an antifungal if your LLMD is amenable to that. Diflucan is saving me! The yeast-free diet is also very good at modulating insulin levels, which is extremely good for us lyme folks.
Alcohol -- IMO, just say no. I mean really no -- just put it in the past. I found that surprisingly easy to do -- I feel much, much better when I don't drink, and that is motivation enough. Sparkling water is a great thing --- I also do some diet soda (and yes, I know there are many here who would disagree with this) and use that as a treat. Water with lemon or lime is a good thing, and sometimes I add herbal bitters to the sparkling water, too.
I can't much speak to the timing of supplements and abx, as I am now doing injectable bicillin, so there is a constant stream of it in my blood. But I have read over and over that it is best to allow at least a couple hours between oral abx and any other meds or supps -- I did that when I was on orals, and it worked out fine.
Hang in there with the herx -- it obviously varies from person to person, but mine on oral doxy was pretty awful. ( I herx a lot less on the bicillin.) I just called in sick to work, said I had flu-like symptoms (true) and hunkered up in bed for 4 days. I find, now, that I feel worse as I get nearer to needing another shot -- so I feel better *on* the abx than off.
This is a long road, but worth it.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Hi and welcome. It is overwhelming. Someone said, don't worry, it will get better. But I also have to say it might get worse as you get better.
Be sure to read the Newbies info and posts under medical. It will take a long time to read and take in but this treatment is a marathon (unless you are one of the lucky ones who caught the infection very early) and not a quick fix.
1. Yeast free diet? Don't know. 2. ABX and vitamins. Most will agree one needs good probiotics daily and liver support (like milk thistle). From then on opinions will vary. 3. Feeling worse when starting abx is normal. Its a herxheimer from the toxic die off, or could be a bad reaction to the abx so check with your dr. 4. Exercise seems individual. It is always theoretically better because it oxygenates your blood. Many of us can't exercise much but we get in what we can. Many of us have pain episodes triggered through too much or the wrong kind of exercise. Burrascano advises non-aerobic.
I am wishing you the best of luck. I hope you heal as quickly as possible.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
Yes, it sure can be overwhelming. You're asking a lot of great questions that most of us here have asked at one time or another.
Good luck with everything!
Yeast free diet: There are some very good recipes in "Complete Candida Yeast Guidebook" by Jeanne Marie Martin. See if your library has a copy.
ABX with vitamins: It's tricky to get a proper schedule going. Ask your doctor or pharmacist if the ABX that you are taking can or cannot be taken with certain vitamins. I'm on azithromycin, and I can take it with my meal and with my vitamins.
Other meds and vitamins I'm taking do not mix. I have developed a schedule.
Drinks: The book I mentioned above recommends that "water should represent 75% - 100% of all the beverages you consume." I'm not that good at it!
Water - pure spring water. Distilled water only for limited periods of time. A little lemon juice in the water is nice.
Sparkling water
Some herb teas: peppermint, spearmint, lemon greass, raspberry, strawberry, fennel seed, fenugreek seed, alfalfa seed, senna leaves, slipery elm, pau d'arco root (the last one helps kill candida)
No caffeine, avoid other teas not listed above. (I'm not perfect, I do drink green tea daily, sometimes decaf, sometimes not.)
Fresh (not canned or bottled) vegetable juice: Most non-starchy vegetables are OK for the candida diet. No more than 8-12 oz/day, or as directed by your doctor. I have a good quality juicer, it's really tasty.
I got all the info above from the book mentioned.
ABX: Usually feel worse before feeling better. Stay in touch with your doctor to moderate the effect. Ask about pulsing (so many days on, so many off).
Exercise: Gentle, moderate, less is more. Walking, yoga, qigong, gentle stretching. Listen to your body, don't overdo it. We're all different.
Posts: 873 | From WA | Registered: Dec 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am sorry you are sick....
but very glad you are finally getting treatment.
I have found trying to cope with all the symptoms of this darn disease to be overwhelming at times all by itself...
Then with the help of our drs. we have to try to figure out how to get well and manage symptoms.
So you are not alone in the overwhelmed department.
I copied your questions so I could remember them all.
The following is just my opinion from my expereinces living with lyme and being in treatment for lyme.
1. Yeast free diet?
I know that I am going to upset alot of people here...
But I do not cut sugar, carbs etc. out of my diet.
For one I have a stomach condition that makes a high fruit and veg diet a no no
(unless I want to be in alot of pain)
Also I would loose way to much weight if I cut out carbs/sugars.
However, I do try to aviod junk food as much as possible.
You have to find out what works for you.
2. taking abx w/vitamins? I would ask your dr. how far apart he wants you to take it.
Not all antibotics are the same.
3. drinks?
For me I do not drink a drop of alchol...
my poor liver has enough to deal with.
I don't drink soda very often cuz it has alot of chemicals in it.
I do drink juice sometimes though. Real jiuce though not those things that are mostly sugar but still labeled juice.
4. I've only been on abx for 2 days, but seems like i feel a helluva worse -> pain, twitches, on edge. I don't think this is "herx" but do you usually start feeling worse once you start taking abx?
Can I ask why you dont think it is a herx.
I have had herxes start HOURS after taking a dose.
5. exercise?
Like I said this is just my expereince.
I am to sick to exercise...
If I push myself to hard my symptoms (mainly the pain and fatigue) exacerbate to the point I can not get off the couch FOR DAYS.
I am not saying that this will be your expereince because with lyme everyone is different.
If you are well enough to do some exercise, maybe you could change the type to a low imact exercise and only do as much as you feel you can do.
posted
Hi Glenn. You've been given some really good answers there. I would HIGHLY encourage you to do the low carb, no sugar diet. WHY???
Otherwise you won't really know when you're "well" since the yeast symptoms are nearly the same as Lyme symptoms.
After you've been on abx awhile, you will have yeast "attack you" and then it will be VERY DIFFICULT to get rid of it or even to get it under control.
You will feel lousy and you'll think it's still the Lyme "talking" when maybe it ISN'T.
Do your best, and adjust the diet to suit your own needs. Just avoid the sugar and the alcohol FOR SURE. Juices will only bring on more yeast, believe me.
I drink tons of water, tea occasionally, and herbal teas when I have the time to brew them. I'm doing very well now and taking time out to fix tea is sometimes not a priority of mine.
I think the exercise question has been answered. Light exercise, not too aerobic. Some light walking or yoga, tai chi, would be great!
Come here often and ask plenty of questions. Sometimes it helps just to ask and hear what others have to say! That's therapy in itself.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Hey again!
I know its overwhelming at first, but you ahve a really good chance of beating this disease now!
I have some info for you on the yeast free diet. No alcohol, juice or soda. You drink water, herbal tea etc. Call and ask your new LLMD when you should take your vitamins and minerals. Write your other questions down, fax the LLMD office and ask them! Yes, you will herx when you start antibiotics, and feel worse. This may continue for some time.
UNRESTRICTED FOODS All protein foods, such as meat, fish, fowl, cheese, eggs, dairy, tofu
RESTRICTED FOODS FRUITS Fruits may be a problem because they contain a large amount of sugars. However, if the fruit contains a lot of fiber, this may make up for the sugars to some degree. Thus: *Fruits are only allowed at the end of a meal, and never on an empty stomach *Only high fiber fruits are allowed *Only very small amounts!
EXAMPLES: ALLOWED IN GENEROUS AMOUNTS Grapefruit, lemons, limes, tomatoes, avocado
ALLOWED IN SMALL AMOUNTS ONLY! (The high fiber content in these hard, crunchy fruits partially makes up for the carbohydrates) Pears, apples, strawberries, cantaloupe, etc. NOT ALLOWED (These soft fruits do not have enough fiber) Oranges, watermelons, bananas, grapes, etc.
No fruit juices either!
VEGETABLES Green vegetables and salads are O.K. Avoid or limit starchy vegetables (potato, rice, beans, etc.) and avoid pasta. STARCHES None!! If it is made from flour- any kind of flour- it is not allowed. (No breads, cereals, cake, etc.)
SWEETENERS NOT ALLOWED No sugars at all, and no fructose or corn syrup
ALLOWED (if tolerated) Stevia (safest), honey, and Splenda, Aspartame (NutraSweet, Equal) may not be tolerated by some patients Saccharin products are not recommended
DRINKS ALLOWED Water, seltzer, caffeine-free diet sodas, coffee and tea without sugar or caffeine, vegetable juices
NOT ALLOWED Fruit juices, regular sodas, and any drinks sweetened with sugars or syrups No Alcohol at all
OTHERS Do not skip any meals. At least three regular meals daily are needed; a better option is to eat very small portions but have between meal snacks to maintain blood sugar and insulin levels. Bedtime snacks, if taken, must be totally carbohydrate free! .....................................
HERXING:
What is a Herxheimer Reaction? By Donna Herrell Director, Lyme Alliance Inc.
Overview: The herxheimer reaction, nicknamed "herx" or otherwise referred to as Jarisch- Herxheimer (J-H) is a phenomena originally observed in the treatment of syphilis, but later found in other illness. In general terms, it is described as a temporary increase of symptoms when anti-syphilitic drugs (antibiotics) are administered. What is known or speculated about Lyme disease herxheimers are based heavily on the reactions seen in syphilis. This is due to the fact both diseases are caused by a bacteria known as a spirochete, the former being Treponema pallidum, the latter Borrelia burgdoferi (B.b). However the herxheimer reactions in Lyme disease are not identical to those seen in syphilis, especially in terms of timing, frequency and duration as noted below.
In Lyme disease it is thought that the cause of herxheimers are the result of endotoxin release, that is toxin(s) within the spirochete that are released as the B.b are killed or broken down. This may be a result of the toxin(s) itself or the body's immune response to such.
Symptoms:
As mentioned, the general description is a temporary increase in symptoms, but also included is the development of new ones. More specifically the most common events include: increased joint or muscle pain, headaches, chills, fever (usually low grade), drop in blood pressure, hives and rash. A multitude of other symptoms have been described.
Worth noting is that hives and rash are sometimes mistaken for an allergic reaction. It is up to one's physician to determine this, but with close observation and the use of medications such as Benedryl often prevents stopping antibiotics prematurely. In more severe cases of J-H a reduction of the dosage or temporarily cessation of the treatment is an alternative.
Timing, Frequency and Duration:
This is individualistic and Herxheimer can occur within days to weeks after the onset of antibiotic therapy. In some patients they occur only once or twice (if at all) and with others continue throughout the course of treatment, usually lessening in severity. They can occur and are more often described in cycles (example: every 4 weeks) and have been reported to last from days to weeks.
It can be very beneficial to document these exacerbations. Some physicians use this as a guideline for treatment. Further it may help differentiate herxheimers from the normal symptoms or progression of Lyme disease.
Treatment:
Herxheimer reactions can be very difficult on patients and affect compliance with therapy so supportive measures should be sought or utilized to lessen discomfort if needed. The use of aspirin, NSAIDs (non steroidal anti inflammatory drugs), pain medication, muscle relaxers, hot baths or others remedies can be appropriate. Of note, some have found Benedryl helpful even in the absence of rash or hives.
The good news is that the herxheimer is thought to indicate that the antibiotics are indeed working and that following each worsening may bring about more improvement. However the lack of herxheimer reaction should not cause anxiety if symptoms are improving.
Other considerations:
Something often overlooked but can present with similar symptoms as a herxheimer is Candida (yeast) infection. Treatment with acidophilus and if needed prescription medications such as Nystatin or Diflucan can be utilized.
Sources of Information:
Lyme Disease 1991 - Patient/Physician Perspectives from the U.S. and Canada The Jarisch-Herxheimer Reaction James H. Katzel M.D. Managing Lyme Disease (1996) Joseph J Burrascanno M.D. Principles and Practice of Infectious Diseases 4th Ed . Mandell, Douglas and Bennett Seronegative chronic relapsing neuroborreliosis. Lawrence C, Lipton RB, Lowy FD, Coyle PK Eur Neurol 1995;35(2):113-117
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bettyg
Unregistered
posted
Glenn, Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
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