posted
I was checking Dr. Burracano's guidelines and he recommends these nutritional supplements. C-Q10, Vit. B, Magnesium, EFA's, multi.
He says besides lyme there are cellular damage and deficiencies in certain essential nutrients, which makes sense to me. However, other LLMD's don't recommend supplementing.
I have to talk to my LLMD next week about this. What do you think?
Cindy
Posts: 37 | From Canada | Registered: Nov 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You'll find the full ranges from supplement heavily to don't do much at all. There is not a right answer - like much of everything else with Lyme. I fall on the "supplement alot" side with what I do, but the jury is still out on whether or not that is the right approach. Dr. K who I respect highly says that the wrong supplements / too many supplements can really delay progress. See other posts on this topic from GiGi.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sunnygirl-he does reccomend those...but his list is much longer and more involved. he requires some be bought from a certain pharmacy and others be used together in order to work correctly. he also suggests certain supps be used for certain symptoms or problems.
i am very interested in this thread-and would like to hear from anyone who has used his supps the way he says to use them.
did they help? hurt? do nothing?
i find them very expensive, but i have learned over the years the importance of using good quality, easily absorbed supps-
another question i have is how much they will overlap with other supps my primary gives me
so-i'd love to hear experiences with his supp protocol too
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
up...anyone??? is dr b "old news now?"
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am trying to use some of Dr. B's suppliments. I cant afford all of them. Here is what I take: The * means it is Dr. B and the co. he recommends. Several of the supps he says can just be taken not using a specific company.
probiotics* Theralac and yogurt daily Mag Tab SR * Co-Q 10 *(120mg)liquid gelcaps---not the co he rec's and not the amount either--he rec's more Vit C ester (1,000mg)* Vit E 400 IU Vit B-complex * L-glutimine (?) L-lysine (?) Flax oil *(liquid caps) not exact co he rec's Alpha Lipoic Acid (?)* Kyolic aged garlic with ester c, astagalus and mushrooms Psyllium epsom salts baths detox tea
The one thing that is required that I do not take is the multi. I havent yet found it affordable. I TRY my best to eat good organic food and stay away from refined flours. I do eat whole wheat and whole grain things. I also eat pasta a few times a month.
I also drink a few SIPS of red wine at dinner about 3 times a week.
and I drink half decaf/half reg coffee with honey in the am.
I dont eat sweets--but ate some dark chocolate a few weeks ago around my period. I always like chocolate around my period...dont think about it otherwise.
Some of the things above I have been on for a long time...some I just added a month ago.
I am also on amoxy/probenecid and plaquenil.
How do I feel? Worse than ever.
And I cant figure out if it is a herx or not---it has been varying from feeling bad to worse for more than 2 months now. I have a lot of pain in my muscles and joints that I have never had before.
It gets more muddy every day and I am not talking about the weather!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I hear ya about getting muddy every week and it's not the water. The last 2 days I'm having the burning pain everywhere and neck so sore. I've been on the tinidaloze(4x250 mg) and amoxicillan (3x500 mg) for 6 weeks now. I think I now have a good dose in my system and the bugs are fighting back
I'm also taking Q10, magnesium, NT Factor, Proboost, BIO K, dyflucan, Multi, Chlorella, EFA 3-6-9, garlic, burbur, cumanda, amandatine, pregnenolone, hormones. I almost need a secretary to keep it all straight.
This protocol is a combination of the FFC Clinic and the LLMD. At my first appointment with the LLMD I forgot to mention the supplements I was on. I have to show him my list at next weeks appointment.
Something has got to give at some point. I've been on this path since last summer.
Thanks for your responses. It seems every LLMD has a different set of theories for immune boosting. Some for and some against.
Posts: 37 | From Canada | Registered: Nov 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Mine has NO OPINION. None. He really says he cant have an opinion coz there are NO real studies to prove anything either way. He just makes sure that none of the things I take interfere with the meds or anything else and that's it.
He says take whatever you want and whatever you think helps, I support you either way. It is the school of whatever works for ya.
But so far nothing is working. I am on that same path as you---been the same for a year--maybe worse. Been on ABX for 5 months now. Not seeing a light. Are you?
Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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So far the improvements are: 1. my head pressure seems a little better 2. eyeballs aren't as sore. 3. Vision isn't as blurry 4. Lymph nodes in my neck are down.
But the pain is worse. Skin, muscles, knees, elbows. Neck and upper back are bad. Body temperature is always very low 95-96, And now to top it off I can't sleep even with meds. Wake up alot.
How about you?
Posts: 37 | From Canada | Registered: Nov 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Very similar.
But if I tell you what has improved I swear without a doubt my body will experience those sx THIS very weekend. It is the most eerie thing and it makes me doubt my disease and my sanity each and every time.
example: I had extensive pelvic surgery this past summer and was talking to the surgeon as a follow up a month ago. I told him that since I started taking theralac (probiotic) all my bloating and gas and pain in my pelvis had gone away!
THat VERY day I began to get those symptoms again.
Now---am I crazy? yep, think so.
Anyhow, I have less of some things similar to yours and much MORE actual body pains: -muscles are SORE -lumps of pain--like a cramp or precramp -bruised feeling like after you get a shot...in entire regions of my body -pin pricks--that make me jump-in bottoms of feet and hands -I just hurt everywhere!
Except head (please dont let me get those headaches again---pleeeeeez!)
How long have you been treating and what ABX?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Wow, we sound similar! This pain is bad! Do you take anything for it? I'm taking 1/2 xanax but need something for pain. My neck is so stiff and sore.
My head feels better but I still feel half-witted! I can write my thoughts out better then saying. I forget words and misplace things. I had bought 5 Valentine Cards and could not find them. I searched everywhere. Found them 2 weeks after on the bookcase! I feel so simple minded.
I've been on abx since Aug 1. The FFC put me on doxy and biaxin but it almost put me in the grave. Was sick, sick, throwing up, couldn't move, couldn't eat. Was looking like a skeleton. So I cut dose to 1/2 and then couldn't take the biaxin at all. Was only taking 2 doxy per day. Then Feb. 1/06 went to the LLMD, and he put me on amoxicillan and tinidaloze. I've been at full dose since then (7 total per day). I think it's starting to hit now.
I'm thinking between 1-4 years to see real improvements.
I just remembered something the BIO K (probiotic) is really helping plus the dyflucan. My stomach is so much better.
Posts: 37 | From Canada | Registered: Nov 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
sunnygirl~
I just recently (as in yesterday) got hit with the stiff neck syndrome! Yikes! This is bad!
I'm on IM Bicillin LA.
Supplements: Multi-vit; additional iron (for anemia); CoQ 10; Mg; LOTS of probiotics; Reishi; B-complex. These are from Dr. B's recommendations, although I don't buy from the company that he recommends...and I may not take the amounts he suggest either (like the CoQ10).
Honestly, I think the antibiotics have helped me the most.
I'm going to try some IcyHot or BioFreeze on my neck! This hurts!
Timaca Recent member of the Stiff Neck Society
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Boomerang
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posted
I'm very interested in this thread too. What to do...what to do.....
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
hmmmmmmm...i'm still wondering if there is anyone out there who takes dr b's supps the way he says to...dosage, brand name, etc...and DO THEY WORK?
the thing is, if we're not taking them right...how can we expect them to work...i just realizded i've been taking co-Q-10 for 5 yrs and w/o the alph lipoic acid to help it get absorbed and maybe i was throwing away all that money on the coq10...
if i know this has really helped someone, i will do it and do it right---but so far no one has said they are doing the protocol the way he says and they feel better
part of his 7 important things is COMPLIANCE-along with getting a lot of sleep, no caffiene, smoking , alcohol, or sugar-i forget the rest-its just a lot of money to throw away if only doing it 1/2 way doesn't work-when doing it all the way might.
i'm not saying it will---i'd just like to know if it has worked for anyone
trails-you might want to check about the flax oil-others on here say it is not good to use-and he says use plant oils but not neccesarily flax. i just looked into this cuz my eye doc ordered the flax oil.
vitch - do you use the magtab sr?
sunnygorl-talk about a secretary! i really could not set my supps up for the week once i got the latest "shipment " delivered. i really couldn't figure it out-it took me 3 days to write each supp, prescription, and over the counter drug i take on a 3x5 card. i listed purpose, symptoms,dosage, w or w/o food, and special notes.
that way i could see where i was doubling up-like i have relied on ginko for years-i really cannot think without it-but his l-carninine and sam-e are supposed to help that and he doesn't say take ginko so i guess i should stop the ginko when i start the l-carninine.
i had over 40 cards when i was thru...and i'm not taking ANYTHING to kill ketes. i get my tests back from igenex next week-so i amy end up adding something for that.
anyway...anyone use em the way he says and see improvement? no improvement? thanks.
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