Topic: what can i do now - herbs, supplements, anything?
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i don't know what to do now. i know my symptoms are getting worse -- i'm wired and can't sleep, even with the elavil. my eyes twitch at night really bad, and now my right hand is burning someting fierce and my feet hurt!!
oh yeah, the colonscopy and biopsy was completely normal!!
i wish he would give me more flagyl but he won't. he said absolutely no antibiotics since my system just can't handle them anymore. i guess because i am at risk to get serious c. difficle the next time.
i've got to treat lyme, but what in the heck do i do if i can't take antibiotics and i'm afraid of herbs now?
is there something that i can use that starts out really, really slow but will work? how about resveratrol or something? cat's claw?
it's got to be something my system will tolerate and won't wreck havoc on my intestines...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Cobweb
Unregistered
posted
Have you been tested for food sensitivities?
I highly recommend the gluten/soy/dairy/sugar free diet. I am really impressed at how just a change of diet has soothed my colon.
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
"i wish he would give me more flagyl but he won't. he said absolutely no antibiotics since my system just can't handle them anymore. i guess because i am at risk to get serious c. difficle the next time."
I am confused...he wont give you flagyl cuz you could develope c diff? I took flagyl to treat cdiff so that doesnt make much sense to me.
If "my system just can't handle them" was refferring to a huge bad herx then i understand that but there are lots of different abx.
I think cobwebs did you get tested for food senstivities? is a good idea.
they did a colonoscopy but what about an endoscopy or bloodtest for celiac disease?
Do you just have lyme or coinfection(S) as well... sorry i cant remember right now.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Randi, this "he" you refer to -- he's a duck, right? Not an LLMD?
Therein may lie the problem.
As Azure points out, Flagyl treats c. diff.
In any event, I thought it turned out you DIDN'T have c. diff?
There are many, many options -- if you're dealing with an LLMD.
Ducks will use any excuse to avoid antibiotics, in my opinion. Unless you have something REALLY bad, like, for example, acne.
An LLMD might try different things till one worked. Or IM Bicillin shots. Lotsa stuff left to try. Don't give up. Find a good doctor!!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I agree with Cobweb and Azure.
If it were me (and it was at one point) I'd get tested for food sensitivities and other digestive issues.
If this isn't the right time for all those tests, you can start with eliminating the main ofenders: wheat/gluten, dairy, soy, yeast, corn, sugar.
It's a bit of a challenging diet, but there was a time, pre-lyme diagnosis, when it changed my life entirely, and put me into lyme remission (although I still didn't know that lyme was lurking in the background.)
There was a time when I had a list of things I could eat, rather than a list of things I couldn't. Now I can eat almost anything again.
You may need to take hydrochloric acid and or digestive enzymes to help you assimilate your food as well.
I'd work with a good naturopath or holistic dietician, rather than trying to self treat on something this complex.
Above all, don't forget the probiotics. You can alternate this with caprylic acid and some other things, if you think you have yeast. If you do, be prepared, it can make you feel pretty rotten.
My philosophy is that you have to start with being able to digest good nutrition in your body in order to make your immune system work.
The immune system has to be able to kick in to finish the job that abx starts.
If you want to try an elimination diet, I think you'll get lots of good support around here.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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quote:Originally posted by Michelle M: Ducks will use any excuse to avoid antibiotics, in my opinion. Unless you have something REALLY bad, like, for example, acne.
Boy, you got that right!
randi...Stop eating gluten and see how you feel. You could feel tons better in one week!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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daise
Unregistered
posted
Michelle: Right--acne! But not Lyme. All too true. It's a crazy world we live in.
Randibear: I agree with everything everyone has said--except food sensitivities. I don't know much about that. Guess I'm lucky not to--apparently--have those.
Do you have an actual, real, live LLMD? It sounds like maybe your current doc is putting you off. That's common. That happened to me with a lot of docs.
Yes--flagyl is the first treatment of choice for c. difficile.
LA Bicillin intramuscular shots are a natural antibiotic that doesn't get processed in the GI tract. I got rid of c. diff by taking 2 - 10 days courses of Flagyl, then 15 days of vancomycin.
My bicillin shots had been stopped, but I got another PCP and started taking LA Bicillin shots again with oral vancomycin and I got rid of c. diff--while taking LA Bicillin!
Bicillin gives raucous herx's of 6 1/2 weeks or more (they overlap.) I got these with a big smile on my face because I knew something was being killed off!
Herx's (unless they are really too much for you to handle, something an LLMD can help you with) are a wonderful thing. I still herx on Bicillin, now 7-12 days each month and it's not as intense. Hurray! I feel a whole lot better.
You got herx's on flagyl: something is being killed off: Lyme!
One thing about Bicillin shots. You can give them to yourself (and there's good instruction about that in the search files at Lymenet.)
Or you might find a friend, family member or even a nurse who is a friend, to give them to you. Or a nurse in a doctors office--although,the copays may be rough, for instance, I need 3 shots a week, 1.2 million units each. There may be ways to cope with getting copays paid for.
A doctors office needs to order the Bicillin, if they give the shots. But you can order it yourself (with insurance approval) and pick it up at a pharmacy, if a friend gives you shots.
With any antibiotic(s): a few or several good, viable brands of probiotics daily. Maybe also an antifungal, like Nystatin. That also helps prevent c. Diff! (Along with boulardii.)
You mentioned supplements and herbs. Herbs, I've found, are often specific to what your signs and symptoms are.
The very most basic supplements I suggest are mercury-free fish oil gelcaps--several, magnesium malate (about 450 mg) and a good quality multiple, plus 50 mg B-complex. There is a good list of supplements (I bought locally) at www.ILADS.org, left menu "Treatment Guidelines," then Dr. Burrascano's 33 pages of tips for 2005.
How to get an LLMD paid for. Hmmmmm. Here's what I did: I got a nurse case manager with my insurance company. See your insurance booklet. If you get one, they're job, usually, is to be on your side. They arrange testing. They coordinate care with doctors. They set things up. Who do they know who knows about Lyme in their company? Will they pay for an LLMD?
Who's your insurance company, Randi? Here's where local Lyme support people can be invaluable. Have you been to the home page for this website? Look on the left menu for support groups.
Don't back down with the insurance company and fax Dr. Burrascano's 33 pages: show them that you know your stuff. Also, within that, is a form to fill-out for all your signs and symptoms: fax that form too, so the nurse case manager has it in-hand.
Or, will they pay for consultation with an LLMD, by phone? By phone was my route and it worked out beautifully.
It was a PCP who administered my treatment, according to a one page treatment recommendation from the consulting LLMD.
For sleep I used Enzymatic Therapy Revitalizing Sleep Formula for over 2 1/2 years. You need to experiment for the right dose for you, for 4 days. Then ask yourself how you feel first thing in the morning. Are you dwelling on your illness or anything else--like money you DON'T HAVE? You need a higher dose.
Do you feel better in the morning? That's the key.
There was a sense of "well being, getting better," with my dose. It allowed me deep sleep--4th stage healing sleep. I used it for over 2 1/2 years and just recently I found I don't need it anymore!
When Herxing I also used Source Naturals Melatonin in liquid or spary (pills don't work.)
I listen to an ocean wave and whale song DVD or jungle sounds as I'm drifting off. I cover my eyes with a sort of black ribbing head band, due to security lights, from outside.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Nice to know there are so many good people out there with advice to give!!! I wish we could say the same about the doctors.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i guess i didn't make myself very clear on that post.
1. this doctor is my gastro doctor.
2. he won't give me flagyl again because he said it's not necessary and one round cures c. difficile. he said most cases are treated with two weeks of flagyl and it's unusual to have to go for another two weeks. he said no more antibiotics because i am at great risk for developing another case of c.difficile. (i made it sound like he said flagyl caused c. difficile, that's not what i meant,sorry) even tho i did test negative, he said it was not unusual to test negative and still have it. all my symptoms were classic of c. difficile or antibiotic induced colitis both which are treated with flagyl.
3. i had tons of tests, biopsies, parasites, etc., all normal.
4. i have not had any food sensitivities, except he took me off all diary. he said many older patients cannot tolerate dairy products.
5. i don't have a llmd and can't travel out of state. don't even mention this. for me, i am not strong enough to battle the situation at home because i go out of state. it's bad enough to just have a doctor's appt, and catch holy hell, than go out of state.
6. i am taking digestive enzymes, and he gave me elavil low dose which is supposed to calm the digestive system, and prilosec and ultram for pain. the elavil and prilosec seem to be helping some. i haven't taken the ultram.
7. i am taking critical care probiotics every day and i like them. it has 50 million in it and seems to be good.
i'm just sick and tired of being sick and tired and not being able to tolerate anything.
the flagyl was the only drug which really worked for me and i've taken just about everything on the market including biaxin. i did get a tremendous herx, in fact, the migraine just put me down, but after that, my head was clearing, my face stopped twitching and i was sleeping better.
i have an appt on monday and i'm going to try and convince him to give me at least one more round of flagyl. it can't hurt.
the least he can say is no....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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daise
Unregistered
posted
Randibear,
You're going back to ask for more flagyl. Good for you. Sometimes when I get in a docs "hair," that's when they may do things--prescribe things I want--just to get rid of me!
Persistence!
Also, you're in Texas. Are you aware that some Lyme patients self-medicate by getting antibiotics across the border? Perhaps a friend could make a run, for you?
A Mexican pharmacist there may help, if they can take a look at your medical records. And if they have Lyme antibiotic information. (For example, Dr. Burrascano's antibiotic information at ILADS.)
posted
Gluten intolerance is not a "food sensitivity"... try it.
As for Mexico... That works! [though I will say this for the benefit of those unfamiliar with how far that is for randi....It's several hundred miles, depending on which route she would take.]
The best bet would be to ask someone who's going there to bring some back.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm in fort worth and the closest would be laredo (which is on the embassy no visit list for americans -- too dangerous).
el paso is more than i'd say 500 miles. that's a no go too.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
If you want to order meds, you can google offshore pharmacies. You can get generics of many things without prescriptions.
But warning, if you don't know for sure what you are dealing with, it can sure be dangerous to play the self-medication game.
You don't want to create super bugs or some such thing, or get elivated liver enzymes that can cause big big problems.
Also, there's no telling for sure the quality of the generics. Some from India are approved for import to the US and are sold in Rite-Aid. Others, especially those from China can be pretty iffy.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
and L-glutamine...Take on an empty stomach.
Google "leaky gut syndrome" and do some of the things suggested there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I know your situation, but I have difficulty recommending any treatment to a person who isn't under the care of a doctor.
I do know at least one person who has done very well on the Cowden protocol, which is herbs. It's not cheap.
Is there any possibility of working with a naturopath or similar in your area? Even if not lyme literate, somebody who is open to alternative medicine and would be at least willing to monitor an herbal treatment? It could be cheaper than an LLMD.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Truthfinder
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Member # 8512
posted
Sorry for all that you have gone through lately, Randi.
Isn't the C***** Protocol doc located in Ft. Worth?
Someone mentioned aloe vera, which can be very soothing, healing, and helpful with irritated and inflamed GI problems. Caution, though, as can produce a laxative-type effect which may the opposite of what you want.
Randi, the only other thing I can suggest is homeopathy, at least just long enough to heal your gut so you can do the type of treatment you want. As you may know, with homeopathy, there is really nothing going into your GI tract. The remedies are extremely high dilutions of various substances, either administered as tiny tablets that go under the tongue, or the tablets are dissolved in water and a small sip is a ``dose''.
I wish I knew someone in your area to recommend to help you through this GI situation. However, all I can do is provide you with some homeopathic directories, which I will be happy to do if you want those.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I like Aniek's suggestion of finding a naturopath. Most naturopaths are open to understanding lyme.
My naturopath diagnosed my lyme, when the variety of doctors I have seen over the years just shrugged.
They will probably know the most about how to get your digestive system back in order, anyway.
Good luck. I'm hoping you'll get some relief soon. You are worth it. You deserve to get all the help you need, even if you live with a skeptic.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ditto on the 'Leaky Gut Syndrome'. Been there, done that, and for me, Flagyl really helped my stomach issues. 4 mos. of Levaquin for 'chronic sinusitus' and no education on yeast left me a dehydrated mess, 50lbs lighter.
Here's a product that really turned my life around:
Rebuilds the lining of the GI system. I realize it's out of pocket, but worth every single penny.
You can find it online in many places. Vitamin Shoppe typically has it in their stores as well.
Also something to not overlook - Bartonella has been shown to cause havoc in the GI tract. Rifampin with low dose Flagyl gave me my life back.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
randibear, I'm having my colonoscopy in Dec, so I will have some answers to my colon problems. I wouldn't do flagyl if my doc said I needed it.
I would find some other means of treating it. Before that date in Dec I will of read everything I can read on gut/colon healing and then trust I find something.
I did abx for over 3 yrs for lyme & co. Quit 4 yrs ago. I took biaxin 1000mg & eye drops about a month ago for staph infection I got in one eye. I took them for 10 days. I'm not having any problems with my eye, but now the infection is somewhere else in my head. For three weeks, I've gone from sore thoats to ear aches/irritation. I probably still have a resistant staph in me.
More abx? No way. They are my enemy now. I will fight this another way. Yes, this is just my story with long term abx and it doesn't mean that anyone else will find abx wrong for them.
randibear, you'll find something else to help you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
If you're thinking of ordering meds online you might do another post and ask people to PM you with who they've sucessfully ordered from. A lot of companies, especially from Thailand, Maylasia and India sell fake drugs.... I got fake flucanazole once from Maylasia and it didn't work and it was a very dangerous situation...
You really do need to know what you're doing if you're planning on doing that...
BTW... have you considered systemic yeast? Has anyone checked you for that? If you get bladder infections it's common to put the urine under a microscope in some clinics and they can dx the yeast right away. Getting it treated thoroughly is a different problem though...
If you don't have an LLMD and have limited funds AND get bladder infections a good place to go for dx that might be either family planning or a free low income inner city VD clinic. Ask specifically for them to look for yeast in addition to anything else. IMHO some inner city VD clinics have better staff than family planning. At least that seems to be true in SF.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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