- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posted by Talktel (Member # 7980) on :
I'm using the PA of a top LLMD.
They do integrative medicine as well.
So I'm following their instructions.
I wonder if it IBS symptoms out-of-control?
But am I in danger with the Lyme?
WIth a medication vacation, do I end up at square one?
Posted by Talktel (Member # 7980) on :
I've been taking malarone and art for a while.
Without feeling issues like this.
Posted by Lymetoo (Member # 743) on :
Candida/yeast??? (yeast does cause brain fog)
What probiotic are you taking? How much??
How is your diet? Are you eating white foods or sugar, fruit??
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Talktel:
WIth a medication vacation, do I end up at square one?
- Not in my opinion.
Posted by RC1 (Member # 31923) on :
I was on Malarone for a while when my gut went bad too. I went off everything upped my probiotics and started Flagyl...in case it was Cdiff. I normalized in a couple of days. Usually Bicillin doesn't cause gut issues because it bypasses the gut, I dunno.
Try not to worry, we all get setbacks like this. I just had to go off for a week because my WBC's dropped really low. They rebounded.
Keep on truckin'
Posted by RC1 (Member # 31923) on :
I also wanted to add one of the best Lyme Docs in the country pulses meds. Off 1 week every month I think it is.
Posted by Talktel (Member # 7980) on :
Its already a week that I'm off meds.
And y stomach is not healing. I did up theprobiotics.
I'm taking florastore,metagenics and I just got a new onew that my LLMD recommended.
ITs supposed to be a to p brand. So why is my gut still crazy?
I'm on a high protein diet, and staying away from white flour and suger products.
I feel a wierd feeling that may be a cardiac arrithmia, and feel like I could pass out.
My stomach lurches at the same time too.
Could it be that the C DIff test is inaccurate? A false negative?
I'm am just so scared that I've run out of options.
Posted by Judie (Member # 38323) on :
Try a CDSA test if you haven't had one recently. I had gut problems for 2 years. This is the only thing that sorted it out.
I was eating organic homecooking, all the right stuff, and it made no difference. Parasites and bacteria can wreck the gut and you need different treatments depending on what's in there.
If you do a text search for CDSA, you can read this person's story and how complicated gut flora can be:
I have taken immodium a couple of times and it has worked for me. I felt like my guts were in spasm. Have you tried anything like that?
I know what it feels like to be off the antibiotics. It's very scary when you were as sick as we were. The longer I am in this boat the more I realize that some time off doesn't change much. Try not to worry too much.
Maybe try rice and chicken, and back off from dairy. It might not be an imbalance in gut flora.
Posted by Talktel (Member # 7980) on :
my doc told me not to take immodium,because if its parasite or bacterial, it has to come out.
I have to wait for results of the tests I did today.
I did take dicyclamine tonight, to see if it relieves stomach spasms. I still feel some spasms.
And many times together with that strange fluttery 'blackout' sensation.
Could it be adrenal glands doing this? Although my doc has me on an adrenal complex supplement.
Blood pressure could make the heart and gut feel like its lurching? Maybe I should see my pcp?
BTW, I did back off dairy, and tried rice and chicken.
Posted by Talktel (Member # 7980) on :
Judy,
I just read your link of the CDSA test.
Who does that, a gastroenterologist? Or an allergist?
Posted by Lymetoo (Member # 743) on :
Yes, avoid dairy bigtime!!! Use only brown rice .. in moderation. No fruit.
I would check with your PCP on the heart stuff. I get that, but I have A-fib.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by Talktel: I'm on a high protein diet, and staying away from white flour and suger products.
Talktel, did you get a chance to read the link that Marnie posted?
Bananas White rice, mashed potatoes Applesauce White toast, crackers (Saltines) Yogurt Chicken (simmer in salted water until tender) Blueberries
Kefir would probably be better than yogurt, as it has many more strains of good bacteria. The lactose has already been digested by the bacteria. Whenever I eat kefir, I notice an improvement in my digestion and BM's.
Posted by Talktel (Member # 7980) on :
A good friend who had Lyme herself, and who has since made a complete recovery for over seven years, recently made a food product for me that must be very much like Kefir.
She made her own yogurt and let it culture for over 24 hrs so it should be loaded with acidophelus.
That's the one dairy food that I ate, but even that was giving me issues. I wonder if I should try it again, or maybe take it with lactaid.
The food items that were listed as good for diarreah, I do eat, with the exception of White toast.
I eat whole wheat bread or toast. I'm careful because of candida.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Carol in PA:
Bananas White rice, mashed potatoes Applesauce White toast, crackers (Saltines) Yogurt Chicken (simmer in salted water until tender) Blueberries
- I know we are all different, but that list would guarantee diarrhea for me, aside from the chicken.
Posted by Talktel (Member # 7980) on :
Hi,
THis morning the runs were so bad I had to go to a doctor to check my vitals. My LLMD instructed me to do that.
THis thing is getting worse, not better.
The urgent care doc told me to drink gatorade, eat bananas and bland food.
If results of the culture come out negative, could I have developed Crohn's disease or something like that?
I never had anything this bad before.
I'm going away for the weekend, but I'll read responses when I come back.
Posted by Brussels (Member # 13480) on :
Why not trying to avoid WHEAT?
I had a similar problem to you long before lyme. I thought I was going to die, nothing stayed in for weeks.
Not even toasts.
Rice, even white, overcooked for more than an hour (about 2 hours or so) with loads of water was the only thing I arrived to eat. Only salt, nothing else on it. the more gluey the rice, the best...
Most lyme sufferers become allergic to many foods, and on the top list are wheat and milk.
I would avoid both like avoiding the devil. Not fun to be on your skin, I know by experience.
The gut and lyme: after years reading lymenet, you will see that lyme affects the gut, or lyme treatment affects the gut, or both.
Candida is on top list, leaky gut, Chron's etc. The list is long, many people struggle for years to make their gut work well again. Even after lyme is gone.
I had MORE TROUBLE with my candida than with lyme. I suffered literally decades with candida. It was MUCH more difficult to eliminate it than lyme.
I am lyme free for the last 3 years (more than), but I still have bouts of candida attacks here and then. Before, I had to fight candida for about 10 months a year, NON STOP.
So yep, it is not fun and not easy. I hope you find some of the reasons for your problem.
Parasites are another thing to look, but be CERTAIN that food allergies /sensitivities and candida /fungi are part of the gut problem for all lyme sufferers (at least once during their fight agaisnt lyme), plus toxins (like heavy metals or from herxes)...
Healing the gut is like healing the body, in my view. Heal the gut (and your mouth), it will be easier to heal from lyme and many other problems.
both my daughter and I have weak digestive systems. While our lyme is gone, we are still working on building up a better digestive system, very controlled diet, organic, allergy free etc. It's a life job.
Specially if you consume GMOs, like corn. Read about it, and how it destroys the gut bacteria, more than antibiotics. I don't consume GMO corn, but I consume and consumed livestock that live on GMO corn (almost every non-organic animal eats GMO).
Better not to think much, just do step by step. The job is huge, but it pays back (energy comes back, digestion gets better etc). Less junk bacteria and parasites colonize your gut...
I hope you found something to eat for the time being! The doctor once suggested coke, just ONE SPOON either diluted in warm water. And electrolytes.
Posted by Marnie (Member # 773) on :
Yeast...berberine AND (trade name- Monostat)...
Google it.
Okay...I'll help, but I'm getting tired of doing so because NO ONE BELIEVES me...
berberine + miconazole (Monostat) if biofilms are an issue (C. albicans = yeast).
The list of diseases it can help is truly astounding.
Posted by nefferdun (Member # 20157) on :
If it is Crohn's disease LDN is very effective for halting it. 2/3 of patients went into remission and 90 percent benefited. It wouldn't hurt to try as it also boosts the immune system.
I had to take abx breaks for one reason or another. You should be ok. If you can handle herbs you could take them during the time you can't tolerate the drugs. It took massive amounts for me -
Are you sleeping ok? Just wondering if maybe your thyroid went hyper. That happened to me. Again LDN would help. Other indications of hyperthyroidism are low grade fever, muscle weakness, irritation and heart palpitations.
Posted by kimmie (Member # 25547) on :
As someone who has dealt with c diff for a long time...the other things you are on are most likely killing whatever remaining good flora you have. Also, the c diff test are almost as bad as lyme test. A negative c diff test means nothing, sorry.
Posted by kimmie (Member # 25547) on :
In the meantime, activated charcoal can help absorb c diff toxins and slow down diarrhea if that is what is causing your GI problems. Kefir, florastor, culturelle, VSL #3, are probiotics that may help.
Posted by Talktel (Member # 7980) on :
Gosh,
All the info you guys have is astounding.
My gut is a little better today. I was on immodium only once.
I'll see what tomorrow brings.
LDN is not an option for me as I did try it- and a low dose and it made me nauseaus like anything.
So that's over.
I was never diagnosed with Crohn's but I was diagnosed before Lyme with IBS.
Could Lyme trigger Crohns? Or the treatment of Lyme?
I have an appointment with my primary doc tomorrow, so I'll raise the issues of thyroid with him.
My sleep since Lyme is always iffy, and I'm taking loads of sleep meds.
Right now, my LLMD told me not to take herbs neither. Just malerone and art, which I've tolerated before for a long time.
I don't want the babs to come back in full force.
I have the other co-infections too, and they are not being treated now neither.
I'm waiting for the test results, which include a repeat test for C Diff.
Someone told me today I've lost weight and look sick. That depressed me like crazy, 'cuz I feel sick and look sick.
I used to not look as bad as I feel, but that seems to have caught up with me too.
Posted by pug7 (Member # 36995) on :
I would get off all meds, but that's me. My daughter and I went through what you are going through and are fine now. It took awhile, like months. In retrospect, I think that antibiotics caused most of the problems.
First, I learned late in the game that getting off antibiotics involves a withdrawal period of a couple of weeks, so you may feel better in some ways, soon.
Second, yes, avoid both dairy and gluten (and possibly other things). Try an elimination diet and then reintroduce foods one at a time. Include dairy, eggs, soy, nuts, citrus too. I was a total skeptic but the results were amazing.
Lots of antibiotics.
Treat yeast if that is a possibility, which will in turn heal leaky gut. Leaky gut often induces food reactions that weren't a problem before. Yeast roots create holes in the gut lining and food molecules get through, where they cause an immune system reaction. My daughter did weeks of fluconazole; I did maybe two weeks.
Gastrocrom is a good med for an inflamed gut, with no side effects. It is made from an Egyptian plant and comes in clear vials that you mix with water. It is an Rx. Gastrocrom is the same med that is used for asthma to calm airway inflammation.
Avoid proton pump inhibitors if you can. Avoid sugars. Garlic is good, including capsules.
You may very well have an infection which needs treating, in your gut. But it is also helpful to do all of the above because an inflamed, leaky gut is a good place for infections to grow, especially when gut flora have been disturbed.
See how you do off antibiotics once the withdrawal period is over. I don't know how long you have been on. We never went back on. Yes we have problems, but being on antibiotics brought more problems than being off. Again, that's just us and your situation may be very different.
Posted by Talktel (Member # 7980) on :
Hi,
I just came back from my primary doc, who got partial results of my tests and blood works. My LLMD probably has all results by tomorrow.
Right now, it does not seem like I have C. Diff.
test came back negative again, and white blood count was good. But not all results are in yet.
My doc told me I must avoid all antibiotics and herbs for a while, as he hears the gut rumbling.
He says I may have developed a localized colitis, which needs healing.
He is a Lyme literate pcp, and tried to allay my fears about being off antibiotics.
He's says he'll talk to my LLMD to figure out how to treat me. But for now it's medication vacation for a while.
If proton pump inhibitors are aciphex or nexium kind of meds, I've been taking that for years, with no ill effects.
The Docs want me to eat food that binds like bananas rice and white flour bread.
My Lyme sx are flaring- is that what you call withdrawal sx? How do I know that I'm not regressing completely.
No doc has mentioned Gastrocrom for me. Is it an herb or a pharmeceutical med?
Posted by pug7 (Member # 36995) on :
Gastrocrom is by prescription. Tell your doctor it is the same drug as Intal for asthma, and Nasalcrom for sinuses. It is very soothing. No side effects. You mix the small amount of liquid in the ampules in a glass of water, 2-3 times/day.
Try white or brown rice bread instead! Going off gluten and dairy may really help you. Honest.
Nexium etc. further disturb the balance of bacteria in your gut. Proton pump inhibitors alter the pH of the gut. They can contribute to colitis and diahrrea over the long term, and also help things like yeast thrive, because acid keeps overgrowth down. They also interfere with calcium absorption, and therefore cause osteoporosis (which you would not be aware of if it was happening).
Chances are that your GERD will improve off meds and off certain foods. I use Tums and Gas-X now.
I have a mainstream PCP now but when we were in your situation, we saw a "functional medicine" PCP (similar to integrative medicine) who took insurance, and he helped us a lot.
I cannot tell if you are having withdrawal or Lyme symptoms, of course. But I can tell you that it took me an extra 5 years to get off antibiotics, because whenever I went off, I became very ill within a day. And very foggy and confused as well.So I always went back on, and believed my LLMD, who said I was in a minority who would need abx for the rest of my life.
I began working with the functional med. doc to get off. He is the one who suggested I was suffering from withdrawal. I found that after two weeks, the apparent relapse stopped and I felt able to stay off antibiotics. Then I began working with him to try to get better from the antibiotics themselves, as well as learn to minimize residual Lyme, since I can no longer take meds due to gut issues.
Everyone is different, so I am only sharing my own experience and hope it is helpful in some way.
Posted by Talktel (Member # 7980) on :
But if this is colitis, does this mean I've actually developed ulcerative colitis or Crones from the antibiotics?
Is this a permanent situation? In addition of serious case of Lyme disease?
I'm in shock. In the past when I've had a similar situation, it resolved in a few days.
I've been on antibiotics since 2004, for Lyme and co. after having been sick and undiagnosed for a year
Posted by nonna05 (Member # 33557) on :
Man oh Man,,,get a cat scan......see if something's haywire in there...
I got hit bad like that two years ago...
.Ended up in hospital..they gave out all the usual names .By chance the ER doc put me on IV lev and one other ABX twice a day..
They wanted to blame it on all the top ten...
had a bit of diver???sp?,but ended up
i was just one of the first of a gut infection/virus going around............did end up in hospital 7 days cause I mentioned my 'unknown ' illness ' so they checked a few other thing's.
major probiotics
any Listeria going around?
as if you need another mystery..sorry
Posted by Talktel (Member # 7980) on :
I think if I would mention my unknown illness, they would totaly ignore me.
Not check me out.
I woouldn't mind being checked out, and having a doc care a bit about what's going on.
Do I see a gastro about this?
Posted by AuntyLynn (Member # 35938) on :
Gotta disagree on the bananas recommendation.
They are likely worried about your potassium levels.
Drink GREEN COCONUT WATER instead! (Like Zico or Koh brands) Much lower in sugar and very high in natural electrolytes! When my BF had swine flu, this was the only thing he could keep down!
Also, black tea (the tannins are supposed to be helpful for binding)... and instead of applesauce (which is way too sweet) you CUT an apple and let it BROWN - then eat it! (Again, for the tannins.)
Medical professionals have long recommended the "BRAT" diet for diarreah, (Bread, rice, apples, tea) but, be sure to use these in the forms that were intended to control the problem. (Plain Toast, cooked rice, browned apples, black tea.) In fact, in Asia, it is a common remedy to drink "rice water" - which is made by boiling rice with double the water used for cooking, and draining off the liquid for consumption.
Saccharomyces Boulardi is supposedly the BEST probiotic for fighting C-Diff. (A couple of highly notable LLMDs insist that their IV patients must take boulardi.)
Another good probiotic is found in the refrigerated section of Whole Foods Market, called BIO-K .
Bio-K has over 50K probiotic organisms in a 2 oz bottle, and it has worked very well for me. (When I was obligated to take an "abx bomb" whenever I visited the dentist!)
Hope you will feel better soon!
Posted by pug7 (Member # 36995) on :
Crohn's is an autoimmune disease, and so is ulcerative colitis. They are chronic. Your problem is probably not autoimmune or chronic. You will most likely get well in a few weeks.
If I had to pick one thing (aside from getting off meds- malarone causes diahrrea)it would be to get off dairy and gluten.
Again, everyone is different.
Posted by Talktel (Member # 7980) on :
all I know is that I'm doing terribly off abx. I was better on, until this gut thing happened
Right now I feel like i'm passing out.
I don't know what to do.
My LLMD is not calling me back with results of the blood works, and I get the feeling that they are 'terminating' me as a patient.
Is it because I'm not doing well?
THey have not scheduled an appointment or a phone consult for me when I asked them.
I called yesterday asking for results of my cultures and blood works, and I haven't even gotten a call back.
Results should be in if I took the cultures on THursday.
I feel like I'm dying, and so alone.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by pug7: Crohn's is an autoimmune disease, and so is ulcerative colitis. They are chronic. Your problem is probably not autoimmune or chronic. You will most likely get well in a few weeks.
If I had to pick one thing (aside from getting off meds- malarone causes diahrrea)it would be to get off dairy and gluten.
- Agree!
Hang in there!. Maybe the office is exceptionally busy.
Posted by randibear (Member # 11290) on :
i feel so sorry for you and i'm in the same boat.
i can't eat any fat without serious stomach pain which goes to my right shoulder blade. don't have a gallbladder. the pain is excruciating.
i've also had c diff so i'm pretty much off all abx.
only this last bout of stomach and diverticulitis the doctor gave me flagyl and cipro for 10 days. i could only do the cipro for five days and then had to stop so i'm on flagyl now.
i take critical care, theralac and one more twice a day for probiotics.
stay away from anything that gives diahhrea like dairy for sure.
i'd recommend going on flagyl only and see if that helps.
no immodium cause it will plug you up and you want to get rid of toxins not stop them in your system.
and eventually you may have to have upper gi and colonscopy to make sure. no fun but the only way to really look at things.
my upper gi is on the 20th. good luck. it's a heck of a way to loose weight.
Posted by Talktel (Member # 7980) on :
I'm trying!
Do I call again today to ask for results-and have them think I'm a nuisance, or let it go?
Will they eventually call me?
THis is a very noted LLMD office.
Posted by pug7 (Member # 36995) on :
It hasn't been that long. I understand what it's like to wait. Maybe you could call the lab itself. They cannot give you results but they could give you a timetable. Often labs take 1 week or even 2.
The LLMD office may be waiting for the labs before scheduling an appointment or consult for you. There would not be much point right now.
It is possible that you will begin to feel better off antibiotics in a few days. In any case, you cannot take them. As I wrote, I got really sick for two weeks after I went off, then it eased up. Everyone is different. That is meant to give you some hope though.
When I am waiting,or feeling sick, distraction sometimes helps. In our house, we have watched a lot of bad tv!
When you do talk to the MD, maybe they can schedule an endoscopy if it is unclear what is going on. Not fun, but can give good information.
One other thing: when I felt alone with not only my own but my kids' illness, a counselor or therapist was helpful. If you can afford it or have insurance, and if you can find one who is good with burdensome medical mysteries....I know that right now you probably feel like you cannot get up, but when you can, I really did find it helpful....
Posted by Talktel (Member # 7980) on :
randibear,
I feel for you. And good luck with your tests coming up!
The LLMD office emailed me today to do more cultures and bloodworks and when that comes back, they'll call me with results.
In the meantime I'm sticking to rice, and rice cakes with protein like soft boiled eggs or chicken. Some bananas too, although I'm nervous about yeast.
Today I very tentatively ate some almonds.
My stomach is a little better today-no immodium, but still feels like it could go at any time.
No vitamins or supplements, only the probiotics florastore, metagenics and VSL. and nyastatin tablits.
I did not cut out the babesia meds and am still taking malarone and art.
I can't risk the air hunger coming back.
I h ope I don't need to end up with an endoscopy and colonoscopy, but that thought has crossed my mind.
Posted by Talktel (Member # 7980) on :
Pug,
A therapist would not be a bad idea. I have zilch money for it.
Too much money being spent on medical issues.
I don't think my insurance plan would cover a therapist-especially one that deals with medical issues.
Also, I'm not reliable to keep an appointment.
Posted by PhillyLyme (Member # 26468) on :
quote:Originally posted by Talktel:
I feel a wierd feeling that may be a cardiac arrithmia, and feel like I could pass out.
My stomach lurches at the same time too.
Wow this sounds pretty much what seems to be my last remaining sx.
It started in around Xmas. Saw a Cardio in Feb and he ran a bunch of test all negative. Said that they are "heart skips" and that they are normal and since my heart was ok there is nothing to worry about. Yeah I know....kinda scary anyways.
I have notice a relationship between eating and the skips and the more I looked into it the more I see the connection.
I stopped ABX about 2 months ago to give my gut a break. Also trying to eat grain free and dairy free I am have gotten a lot better. I did not get a big skip for about 1 month. Then I relaxed my diet cause I had family over and the are now back...I am starting to eat right again to hope to get it back in control
Posted by Talktel (Member # 7980) on :
wierd.
I had it two years ago and also did a full cardio workup, and nothing showed up.
My stomach has not healed since whis whole thing started now. When I think its getting better, my gut reminds me I still have a problem
Since I stopped antibiotics and all herbs and supplements,I'm definitely feeling more joint pain, fatigue and air hunger coming back. Brain fog sometimes better or worse.
I have a bunch of co-infections that could be doing that.
I'm still on malarone and art for babs.
I did more cultures on Wednesday, so LLMD office said they'll call when all results are in.
I did contact my gastro doc who said when I have test results I should come in and see him.
But I don't know if the stomach issue is Lyme or not.
THe wierd feeling of 'lurching heart' is sometimes there, and sometimes not.
I'm considering doing acupuncture.
Does anyone know if it will help for Lyme and Co - or maybe even help my gut to become healthy?
Posted by Catgirl (Member # 31149) on :
I get acupuncture all the time. It's worth every penny. Just tell your acupuncturist the main things bothering you and he or she will help to fix it (effects are cumulative--the more you go, the better).
I don't know how people with lyme live without it.
Hang in there. It sounds like your lyme doc is working on it. I hope you are avoiding gluten too. I just saw a you tube a few weeks ago that said gluten causes IBS.
Posted by pug7 (Member # 36995) on :
Hormones can cause heart skips (PVC's). Also, if they happen after eating, I have found that taking Gas-X helps. I belch and the pressure on my heart is relieved. I would say that this phenomenon w/heartbeat results from digestive problems at times, for me, though they used to be caused by estrogen.
It is a huge adjustment for your body to get off antibiotics. I do wonder if it will settle down in a week or so for you, the way it did for me.
PVC's are harmless, by the way, but the very fact that you have them can cause anxiety. I used to take tiny amounts of xanax, which would prevent the PVC's from causing panic.
Posted by Talktel (Member # 7980) on :
Pug, I don't know if going off antibiotics is great.
I do know I'm feeling way more lymey with all kind os sx, but since my stomach is bad, I cannot go back on antibiotics.
I do think that I will end up by the gastro doc, who might reccomend a colonoscopy and endoscopy, as Randibear is doing.
I wonder if the malarone and art are contributing to this, but I can't be so sick with babesia, and have again the terrible air hunger.