Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I just wanted to share my experiences with people. And of course this is just a theory, my opinion. We all just so much want to feel better. We read so much about the benefits of supplements for inflammation, and antioxidants, and just to help out. But you have to listen to your body, and if something isn't right, don't always blame lyme and co.
About 6 weeks ago, I started D3 because my levels were very low, and Curcumin regularly because my inflammation was high. I had been feeling pretty good and wanted to feel even better.
at first I felt great! better than ever. but after about 2 weeks I was achy again, 3 weeks I started getting digestive issues-- but I kept going...cause this was a herx, right? I was still on ABX.
last week my PCP redid my CRP and Sed rate. In just a month, my already high rate had gone up 10 and 15 points.
later that week, my digestive issued became a full blown flare of ulcerative colitis.
Having allergies, I know that sometimes things you ingest can cause systemic inflammation. So I started to retrace what was new... I had been doing so well!
well low and behold, Most D3 is sourced from lanolin. I am allergic to wool, and most anything cute and fuzzy with fur (except my non allergic Havanese dogs...but I even react to poodles)
I don't know if I am allergic to tumeric-- but I stopped both anyway.. within a week my joints and muscles are feeling so much better. I will be interested to see if my inflammation levels go down.
This also happened when I started taking fish oil many, many years ago. it turned out, I suspect, to be the citrus oil as I am fine on unflavored which means I can't take the most touted brands.
But again, with the fish oil I felt great, almost euphoric, for the first couple of weeks, until I felt worse than ever. As it turns out, ingested allergens often make you feel great, before they bring you down! It is why so many have so much trouble resisting wheat-- it creates an opiate effect. In my very layman terms...it is all those cytokines coming to the rescue...until they can't keep up and then they cause chronic inflammation. Anything that
I suspect there are things other than allergens that create a bad reaction in specific bodies. so I just want to say listen to your body... start one thing at a time...weeks to a month apart... so you can detect the cause and effect.
I know that some will say allergic inflammation is all part of the disease... and my outward allergies (rashes and nasal) are much better since I have been treating lyme. But I believe my allergies to lanolin sourced D3 is responsible for my current inflammation.
I just think we so want to get the benefits others talk about that we may not recognize what's happening...complicated by the fact that with this horrible disease...feeling bad is a good sign. But if the feeling bad does not end, maybe suspect what you are taking and not the lyme.
Just because the studies say so, if you start feeling bad after a few weeks of starting a miracle supplement...it may not be a miracle for you. Just an opinion.
Posts: 1728 | From USA | Registered: May 2011
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Good for everyone to bear all this in mind.
On your case specifically, I wonder if NAET allergy treatments would help.
By the way, the vitamin D3 I take, Vitamin Code Raw Vitamin D3, is theoretically vegan. They have a whole write-up on how they make it. I believe they do start with non-vegan sources that may be lanolin, but then it is processed through through small living things so it is "live food", and no longer lanolin in some apparently real sense. Something you might consider if you still want the benefits of vitamin D3.
Posts: 1927 | From se usa | Registered: Mar 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I agree Kudzuslipper. I was on sooo many supplements and meds, it was impossible to tell whether it was the meds/supplements making me sicker or the infections.
Since I stopped almost everything, I am still sick, but not nearly as debilitated as when I was on massive meds/supps.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i can't tell you how much stuff i have bought that i couldn't take. some i could return, others i just gave away. i must have sent boxes to my sister of vitamins, some went in the trash.
now i only take a few vitamins and cowden. i'd like to take mangosteen but can't afford it right now.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I have had the same type of issues. Took fish oil and withi a week had horrible joint pains. Tried curcumin, same issues. For me less is definitely better.
Posts: 1748 | From United States | Registered: Dec 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Thanks for that info michael. I will check out vitamin code. I will also have to research the NAET again. I've forgotten what that entails.
Randi, Lax, glad I'm not alone... I read all these studies and articles and I am sure this must be the missing link... Alas...seems like flagyl and cipro are the missing link for me...sigh.
Posts: 1728 | From USA | Registered: May 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah and let's not forget all the prescriptions that we fill and find out we can't take the meds, so i end up with a shoe box full of medicine that eventually has to be thrown out.
shame...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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 - those who know the cleanest sources -
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Kudzu - this is a very good point. We all want the magic potion but this disease affects us all so differently. If there was one clear path to wellness, there wouldn't be any debate about Lyme treatment.
For me, I had high hopes for glutathione and then had a horrible response to it. LLMD thought it might have to do with sulphur toxicity. Our bodies are so full of so many toxins, who knows what might set us off!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Good point! A reminder to always begin ONE thing at a time.
I am very sensitive to citrus and also have to avoid the citrus in some omega 3's. I buy Carlson's .. but get the PLAIN.
I love curcumin .. it could cause stomach distress for some, but it's one of the only things I can take for inflammation. (that and mangosteen)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Tutu, Carlson's has a plain? I will have to check it out.
Posts: 1728 | From USA | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Well said Kudz (miracle supplements).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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