Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Sensitive to medications and supplements, that is.
I swear, before I got sick I could take most things and not bat an eyelash.
Now, it seems like everything I try makes me sicker....or like I'm dying.
I always have to start at practically a newborn dose of everything now, to see how badly I will react.
For example, I tolerated a prescription iron supplement "ok...not great, but ok", and ran out. So I took a Blackstrap Molasses iron supplement to tide me over until I refill my script.
30 minutes after taking it, I could feel myself crashing. Today had been a more tolerable day, until I took that stupid thing.
Now I feel like dying.
It's not just the Blackstrap Molasses. It's pretty much everything.
Why does this happen? Every doctor ( 14 of them ) that I told this to...about all of a sudden being so sensitive when I never was before....looked at me like I had three heads.
They think I just have a pill phobia, but I swear it is not from a phobia.
This is real.
I see lots of people here who take so many things to get better, and all I can think is, "God, if I took all that I'd be dead."
If I took a whole B-50 tablet, I'd feel like I drank jet fuel. If I take an entire capsule of NAC or Milk Thistle, I get burning and a headache from Hades. A whole vitamin C tablet causes me to feel like I will pass out.
And this is just the supplements. The abx's are just as bad or worse.
I just don't get it. I was never like this prior to getting sick.
Does anybody know what causes this sensitivity?
Thanks. I'm so bummed out right now and ready to throw in the towel, but it's not an option.
I have thought a lot about KPU, but am even more confused because my doc did nutrient testing on me and the only thing that was low'ish was selenium.
I feel like I'm so screwed with getting well because of my inability to tolerate things.
Posts: 1142 | From South | Registered: Dec 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
My daughter is the same way, but not as extreme as you.
She can no longer tolerate antibiodics...and has to use somethings else.
She also sees an energy doctor which has been very helpful in determining what her system needs as well as what she can tolerate.
I wonder what causes the sensitivity to happen too?
Oh, yes, she went gluten-free and that has helped a great, great, deal.
So sorry for your troubles...she too was very ill for four years before getting a diagnosis...so I wonder if having Lyme untreated for awhile is part of the puzzle?
It will be okay...I guess I just have to add that an energy doctor might really be helpful to you if you can find a good one in your area...especially since you have such a sensitivity to things...I don't advocate much on here, but that could be the key to help you figure things out...or at least give you a bit more insight into things.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Camp Other
Unregistered
posted
Hambone,
Out of curiosity, have you mentioned this to a family physician at any point? Has anyone run your liver panel? Sometimes increased sensitivities to even small doses of medication and supplements can be due to liver problems.
Other than this, it might benefit you to look into being gluten-free if you haven't tried it already - if the pills you're taking have gluten in them, that could be adding stress on your body if you are sensitive to gluten.
Note of caution: If you do go gluten-free you will need to supplement B-6 I think. The B's you normally get from grains won't be in your diet.
Maybe taking a meds and supplement break and trying to get vitamins and minerals from food as much as possible for a while might help - then you can try slowly adding in one thing at a time.
I'd still get my liver checked out, just to eliminate that possibility.
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posted
I also have to take very low doses of anything when I start.
My guess is the liver is overwhelmed by the infection and cannot clear metabolites easily from the body.
Posts: 13171 | From San Francisco | Registered: May 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
The body is overwelmed with toxins, bacteria, parasites, mycoplasma, fungus, mycobacterium etc.
Vitamins only feed the bugs at this point. I agree with Robin and would start on low doses. I would start with antiparasitic and antifungal herbs. You might want to look into the salt/c protocol and some coconut oil as well.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Sue....Thank you. Hope your daughter feels better soon.
Camp other....I've told this to every single doctor, and get the "look". I've had many liver panels done and everything is always ok. My liver enzymes ( before abx ) were always low. I even paid $600 out of pocket to be tested through Genelex for the P-450 pathways and to see how I metabolize. They said I'm a normal metabolizer.
There is another test I might ask my doctor about getting. The one where you take acetominephin, caffeine and aspirin ( I think ) to see how these are metabolized and it can tell you if your phase I and phase II detox is functioning normally.
Robin....Do you take abx?
Gael....I always start low with everything. I have a pill cutter and alway start with 1/4 of anything. I even pull apart capsules and pour most of it out to test the waters.
I've been using coconut oil for a few weeks now. I even have to start low with that.
It's just so frustrating when you want to get well so badly and you can't take/try things like a regular person. I don't understand how others can be so sick with the same illness and be able to take what seems like truckloads of good things to help and not be so sensitive.
I do have low cortisol. I had an ACTH Stim test last year and my adrenals were stimulated big time, so the issue is with the pituitary. I wonder if this sensitivity is from my adrenals not being able to handle the effects of these things I'm trying?
I see people take things to repair the adrenals, but my adrenals don't need to be repaired. they just don't get the signal from ACTH to put out enough cortisol. How do you fix that?
Thnak you all for the thoughtful replies.
Posts: 1142 | From South | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Toxicity affects adrenals.
- This book is specific to lyme and other chronic stealth infections. The author discusses the endocrine connection and effects of STRESS on a person with such infections. You can read customer reviews and look inside the book at this link to its page at Amazon.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris and Per Marin, MD, PhD
==================
Remember that lyme really messes up the HPA axis (Hypothalamus/pituitary/adrenal network). The pituitary has much to do with weight/growth. Mess up any part of the endocrine system and other parts suffer, too.
. . . combine milk thistle seed with dandelion root, artichoke or turmeric root to create a simple yet potent liver tonic which heals, repairs, detoxifies and gently stimulates the liver.
It can also be used in patients who need larger amounts of herbs for serious problems, but are having difficulty processing them if the liver is overwhelmed.
When the liver is overwhelmed it create various symptoms including but not limited to irritability, skin itching, heat sensations, digestive problems, bitter taste in the mouth, fatigue, and
* * the tendency to react negatively to many different drugs or herbs. . . .
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
** Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Actually, the sensitivity that you describe is very common for lyme patients. In addition to most Rx, many herbs, even some vitamins, many also become extremely sensitive to all kinds of external stimuli. And there are many explanations for this.
Of course, it's vital to address infections, heavy metals and parasites - and liver and adrenal support often helps along the way, whatever the sensitivities are: ------------
3/4 of the way down page one, there are lots of LIVER LINKS:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sea salt and Vitamin C support the adrenals as well as kill bacteria. If you are not salt sensitive this might be a good place to start at low doses and ramp up slowly.
Check out lymestrategies because these are the people with Lyme disease that are on this protocol and other protocols as well.
When I first became sick, I could hardly put anything in my mouth including some food. I was reacting to almost everything including the air.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Hambone - I have a fibromyalgia strain and I take oral clindamycin antibiotics for it - takes the fibro pain to zero and reduces joint swelling.
I participated in a one-hour TV talkshow, which you can google for if you want - San Francisco Lyme Disease Talkshow - there's four of us, plus the talkshow host, educating the public about Lyme.
One participant, Elize, talked about the liver. She said the liver panels tested her for 36 functions, and showed that she was fine, yet there are 500+ liver functions, and her liver was hard-hit by Lyme.
Also, so much of the time, I've seen us pass tests even when we're not ok from Lyme and co's.
Genova Diagnostics has a detoxigenomic liver test that shows whether we can genetically detox via glutathione and methylation pathways. It can show an aware doc how we are and how to slowly start working with us on detoxing.
Posts: 13171 | From San Francisco | Registered: May 2006
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Wow...Thanks everybody!!!
I am so glad I can ask this stuff here and get legitimate answers, and not made to feel like I'm coo coo ( like the doctors made me feel ).
My current LLMD understands the sensitivity because he treats people with MCS ( smells don't bother me at all ), but he just doesn't quite get mine to supplements. He tries to understand, though, which is all I can ask. At least he doesn't look at me like I'm a looney tune.
Keebler.....he (LLMD) did say my HPA axis has been "dinged" by the Lyme. His thinking is the treatment will help it to self correct. My thinking is the HPA issue makes it tougher to tolerate treatment. I was happy to see Burrascano thinks this could self correct, too, with treatment.
Whew! Thanks again for all the great input. And THANK YOU most of all for putting up with me and all of my questions. I have 6 years of questions built up and I'm trying not to ask them all at one time.
Posts: 1142 | From South | Registered: Dec 2010
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posted
Please get tested for KPU also. This is done thru Vitamin Diagnostics labs. Also you are correct, when the adrenals are shot you can react to everything. Please read Stop the Thyroid Madness book.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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I was exactly like you about two years ago and stayed like that for almost a year. Couldn't tolerate anything at all. Even vitamin C like you said made me feel like death.
I'm not totally over the problem but now at least I can take a supplement protocol and if it was an emergency I could take a short course of antibiotics.
For me I'm not sure it was a liver issue cause I was doing very hard core detox with ozone and chinese herbs. I am more inclined to think it's an immune reaction but I really don't know...
What helped me get over the worse has been staying off everything for at least 2 months and only taking the Pekana detox and Drainage kit starting with one drop of the three products in a very large glass of water and slowly increasing the dose over the 2 months. Maybe it detoxed my system but it is also an immune modulater.
Do you notice if these reactions are worse when you have more inflammation going on? That made me think that for me it is an immune thing.
Posts: 81 | From Italy | Registered: Jan 2007
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
ericaf,
I am very inflammed. I have a high CRP and a high SED rate. When I take things ( supplements and meds ) I do feel like I am throwing water on a grease fire.
Before being diagnosed, I went two solid years without taking anything. No meds, No supplements. I was just waiting to die, actually.
Posts: 1142 | From South | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Take a look at the "Secondary Porphyria" post here first. Even if one can process cytochrome P450's substances under normal circumstances, the addition of a toxic infection can change everything. Then, treatment makes that even more tricky. --------------
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