Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Do you have guidance? Do you have a LLMD or LL ND who has recommended your protocol?
Have you read Burrascano's supplement suggestions?
Have you read Singleton's book "The Lyme Disease Solution" ? That is your FIRST STEP. That book is wonderful at explaining support methods.
Have you read all about everything you are taking?
Are you getting your supplements from a top quality source?
I assume you always search every RX you are given. Much the same way, you can find a lot by cross-searching the name of each Rx with the name of each supplement.
A few ITM links regarding SAFETY and INTERACTIONS:
I am working with a LLMD and have familiarized myself with Dr. B's protocol...and Dr. S's book. And lots of other stuff too
Done tons of reading and am getting supplements from reputable sources, so I feel good about that.
I'm on Rocephin for Lyme and will add IV Zithro or Levaquin next month for Bart and mycoplasma. I have active HHV-6 and am attempting to treat it naturally.
Hydrocortisone Fludrocortisone Synthroid DHEA HCl and pancreatic enzymes B vit injections Vit A, D, E, K Iron
and the following supplements:
Vit C, Zinc Calcium, Magnesium CoQ10, L-Carnitine, ALA fish oil coconut oil probiotics adrenal glandulars quercetin w/bromelain
My LLMD and I communicate regularly, which is great (and I'm very thankful for that!) but he's very busy and I'm very complicated...just like to cover my own bases, you know?
And what's funny is I'm a tiny little shrimp of a person...
Thanks for the tip on the Buhners book. I'll get right on it.
Posts: 95 | From Maryland | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Only speaking to the supplements. Can't comment on the Rx.
First, your vitamin D is D3, correct? Not D2.
I don't see that as necessarily too much for your master list - but I'd not take all the herbs at once - I'd rotate. Much of it is straight nutrition from dense sources. The actual food source supplements look very good but, still, rotation is a good idea.
It's unclear if you are continuing all of what was listed. What your LLMD has you taking is a short list. Are you taking the rest of the list, too? If you, I assume your LLMD has okay that.
Are you also on a gluten-free diet? That is usually very helpful.
I just saw a 90-minute lecture on our cable TV last night on the top superfoods. You might google a Dr. Steven Pratt and take a look at his book. VERY good information.
But, actually, the term "superfood" would never be needed if there were not so much junk sold as food. Still, his list goes beyond the top ten in snappy TV blurbs to a much larger list with a full explanation of nutrients in each one.
You can find 6 -8 selections of his books at Amazon just by a search of his name: "Steven Pratt"
While a supplement like Spirulina is actually food- and a fantastic one - be sure you are also taking in LOTS of good food - the whole food offers so much more than any supplement can, such as blueberries, wild sock-eye salmon cannot be replaced just with fish oil, etc.
Then you may not need as many food-dense supplements. But spirulina is clearly the best in my book. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If your LLMD has knowledge with all you have on your list, great.
If not, you might want to consult a LL ND (naturopathic doctor) or other professional with training and licensing in this area. A good LLMD will have a working relationship and should be able to refer you to someone who will fit your needs in these complementary areas. And, be sure any LLND is truly LL and ILADS-educated, and works well with your LLMD.
A ND who is not LL (that is ILADS-educated) simply does not have the knowledge to be treating lyme/TBD (tick-borne disease) patients. They may be great at treating other patients, but lyme patients deserve doctors (of all types) to be thoroughly educated about all aspects of TBD. Now, they may not go by the ILADS guidelines, but they should know the work of all the authors listed on this page - and that of Alan MacDonald, too, with his work on biofilms. And the work of Garth Nicolson with mycoplasma.
Sorry, I didn't mean to go on so long. It is so complex and I do expect professionals to know the work of others. I am not the only one to waste so much time trying to figure so much out on my own - and also consulting many otherwise good doctors who were not well enough educated.
You might also ask your lyme support group for suggestions. There may be some DOs or DCs with good knowledge in your area. You can ask what kind of training, etc. as there is such a wide range out there.
While herbs are considered supplements not all supplements are from herbs and not all trained with nutritional supplements also have training or certification with herbs. But anyone in this field should be glad to share their background so you can know more about their work.
While reading and learning on our own is good, it's best to have your entire protocol designed especially for YOU, for YOUR body, taking into account not just your diagnoses but what your body needs as particular points in time.
You asked about contraindications. Well, that is why it's best to have a ND decide after they have seen you.
Even for what may seem a normal cold, the same herb(s) will not necessary work for everyone. In fact, two people with what seems to be the same cold may require very different approaches. So much depends on your body and all the information a ND or L.Ac (acupuncturist) finds in evaluation.
Also, many NDs and L.Acs rotate or even totally change the plan every 3 weeks or so. Some herbs may no longer work, or you can become allergic if on the same thing day in and day out for a long time. Rotation is key.
The "One Earth" Book listed below is excellent at explaining the way herbs work and the language and concepts. I really hope you can get the book but, in the meantime, the authors have been very generous in sharing on their website.
I hope you can copy and paste this for easy access in your computer file. You may have seen some - or all - of these. If not, this is a collection of work by LL authors - integrating complementary methods. To compare and contrast:
This is great information and I really appreciate every bit of it.
My LLMD is truly integrative and after all the docs I've seen in the last few years (I know many here can relate to that...) it's such a relief to have found him.
He is aware of everything I'm taking, but he's really swamped all the time. I'd like to sit down and pick this stuff apart, but there's so much going on with tests and problems aside from the Lyme & Co that we really have to prioritize each conversation.
I also just like to double-check everything - I'm a control freak, what can I say?! Experiences over the last few years have taught me the importance of this.
I have a great chiropractor who is also constantly swamped with patients...he defers to the MD as far as treatment goes. My acupuncturist is wonderful but I can't afford to see her right now, unfortunately.
To answer your questions, yes I am taking all of these things together. I've been on a GFCF diet for quite a while - I have Celiac and multiple food sensitivities and lots of autoimmune problems.
I only eat unprocessed, organic, yeast/sugar-free, no caffeine/alcohol, blah blah blah! Very careful about that stuff and am sure it was instrumental in helping me get through the last few years.
Posts: 95 | From Maryland | Registered: Sep 2009
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posted
About the Vit D...kind of confusing, that one!
I have fat malabsorption, so I am perpetually low in A, D, E, K. When this was noticed 3 years ago, I was prescribed 50,000IU of D2/week which I took for 8 weeks.
My levels declined within a few weeks of stopping the prescription. Finally I educated myself on the ways of Vit D and continued supplementing with D3.
Levels stayed low, was given a couple more scripts for high-dose D2. But then I wised-up and asked for D1,25 levels. They came back high.
At the same time my CD4/CD8 ratio came back high, and ACE levels were borderline. So I thought...Sarcoidosis. I'm familiar with the Marshall Protocol and asked to be checked for mycoplasma infections.
Very high titers for active mycoplasma pneumonia (interesting, b/c my symptoms all began with a bout of "walking pneumonia" that was inadequately treated...)
So after the Sarcoid thing was suggested by a couple of docs, I decided to limit my Vit D and see what happened.
I didn't try the rest of the MP...Benicar is a no-no b/c of pre-existing problems with BP (Addison's disease) and I wanted to direct my antibiotics towards the Lyme & Co specifically.
Didn't feel any better limiting Vit. D. Had my PTH levels checked and it was high. With Sarcoid, it should be low. Vit D deficiency can make it high.
Then I read that ACE can be high with Addison's and D1,25 can go up from long-standing Vit. D deficiency. Ah ha. No sarcoid (I don't think).
So now I want to bring my D levels back up...having trouble doing that with D3 supplements alone! Considering taking the prescription D2 just to get "on top" again, but not sure if it's the best thing...
Pardon my ignorance with this, but are there any reasons not to take D2? I mean, is the benefit to D3 its potency, or are there actual risks of taking D2?
Sorry for writing a novel here!! Posts: 95 | From Maryland | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- D2 will not offer the protection needed. It will not be well absorbed.
D3 is what you want. D2 will not get you where you want to go.
Of course, if you have conditions that warrant close monitoring, it is important to know your levels. Too high is as bad as too low.
If low, D3 should be the Rx, not D2.
You can read several articles about how and why here (and you can evaluate the scholarship of their sources at the end of each article):
posted
From a quick look at your list I would say that probably there are no interactions to worry about.
Actually most herbs and supplements can be taken together with no problems -- the problems come when adding in meds. St Johns Wort and grapefruit juice are probably the things which interact with the most meds. And as far as antibiotics -- calcium can't be combined with Doxy and maybe some others.
I would just research each of your meds individually.
Hubby's list is probably twice as long as yours.
If you add in any of the more uncommon herbs like cryptolepis or andrographis etc then I agree that the Buhner book is probably one of the best sources for info.
Good luck.
Bea Seibert
Have you tried adding ox bile supplements to improve fat absorption? Also don't think I saw flax oil or fish oil or olive oil on your list? phosphatidylcholine or lecithin might also help.
Also the amino acid lysine might help with the hhv-6.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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When anyone sees my supply on the counter, their mouths actually hang open.
Posts: 423 | From Upstate NY | Registered: May 2009
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massman
Unregistered
posted
Do you have a gallbladder ? Do you take the ox bile with the meals ? (Bea beat me to the ox bile suggestion ) What about digestive enzymes with lots of lipase ?
Bea said "Actually most herbs and supplements can be taken together with no problems -- the problems come when adding in meds"
Pretty much true, IMO. Some parts of herbs + drugs can cancel out OR strengthen actions of other drugs or herbs.
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No gallbladder (had it removed 5 weeks ago today, actually!). I take the ox bile with some of my meals - usually I don't take it with non-fat/low-fat meals. Do you think I should?
I take pancreatic enzymes (lipase, amylase, protease). They were prescription at first b/c of a couple of bouts of pancreatitis - talk about PAIN! Holy smokes.
I remember someone else here having gone through that - was it you? Sorry I can't remember...
But actually I had a hypersensitivity reaction to the prescription Pancrease and the OTC works just as well for me.
I also take HCl w/betaine for atrophic gastritis, and to be safe, a complete enzyme formula with trypsin, papain, bromelain, etc.
I used to get severe gastroparesis that landed me in the hospital a few times...but once I started doing this stuff (especially the HCl), things really started looking up.
Thank you for the herb/drug advice and the information. This is all very helpful.
Posts: 95 | From Maryland | Registered: Sep 2009
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