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Not tolerating binders well.

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Posted 1/17/2023 3:24 AM (GMT 0)
Hello all,

I’m at the end of month 5 of Cowden protocol and feeling no better. I’ve been taking about 500mg of Liposomal Glutathione daily, and while that helps my mental symptoms (sadness, discouragement over nothing, etc.) , it causes crazy chills and drowsiness.

Parsley capsules drop my blood pressure, and the Quick Silver charcoal/bentonite/zeolite powder makes me feel worse whenever I try to take it. I even took 1/4 of a tsp instead of 1 tsp. I make sure to drink a lot of water when I take it. I will be more achy, tired, chills, stomach irritated, etc.

I am discouraged and struggling. People say binders help them a lot but I just feel worse. Is this something I should push through? Any binder recommendations? I am often reactive due to MCAS. I also have POTS. Of course, Lyme and likely co-infections. I suspect mycoplasma in lungs and candida.
Posted 1/17/2023 8:43 AM (GMT 0)
Hi alsmith.

Sorry to hear you haven’t had any improvements on your protocol after 5 months.

My thoughts are that after a given amount of time - and no improvements maybe it’s time to try something else.
Posted 1/17/2023 2:34 PM (GMT 0)
Try taking TUDCA. Start with one capsule in the morning for a week or two. If you tolerate that, add a second capsule at night. You can increase the dose more over time.
Posted 1/17/2023 2:42 PM (GMT 0)
I never found binders to be useful, either, and some made me feel worse (or much worse). I know they are very helpful for some people, and I did not try every single one, but I realized that anything that slowed by digestion was deleterious for me. Dr. Rawls says that the best binders are vegetables in your diet - making sure that on every plate you eat, half of the space is taken up by vegetables. If my intestines are emptying completely at least once per day, then my body gets rid of what it need to get rid of.

I have POTS and MCAS, too, and I understand how those things complicate the picture. What are you doing to treat those? Once I addressed them directly (with the advice from Neil Nathan's book Toxic) I felt worlds better very quickly. I had been on the Buhner protocol, a DesBio series kit, pieces of Cowden, rife, and other antimicrobials for four years without improvement.

Hope you find something helpful soon! And I agree with Girlie that it might be time to consider another approach soon if you aren't seeing improvements in any of your symptoms.
Posted 1/17/2023 3:15 PM (GMT 0)
@saraeli, thanks for the input. I’m on a beta blocker and Midodrine for the tachycardia and low blood pressure, but sometimes with the combination of all that I’m taking, I end up with a drop in BP despite my meds. I am taking a large amount of various supplements alongside Cowden as well.

For the MCAS, I take 10mg Loratadine daily, a lot of Quercetin and Nettles, and large amounts of Vitamin C. My main symptom of MCAS seems to be throat “tightening”, or swelling. It’s never closed up entirely, but it will come on very fast whenever I inhale or swallow something that my body doesn’t agree with. Occasionally, this can make taking supplements difficult. But I have been able to tolerate a lot more than I used to, and I am grateful.

I wonder if my lack of binders is much of the reason why Cowden isn’t helping me so far. I do feel worse on it, and I’ve had some big herxes throughout, so I think it’s hitting something. I’d been ill for 7 years before discovering Lyme.
Posted 1/17/2023 3:16 PM (GMT 0)

WalkingbyFaith said...
Try taking TUDCA. Start with one capsule in the morning for a week or two. If you tolerate that, add a second capsule at night. You can increase the dose more over time.

Thanks for the input. Can I ask why you recommend TUDCA over a different binder?
Posted 1/17/2023 3:56 PM (GMT 0)
TUDCA is not a binder. It aids the liver. It was the only thing that reduced my symptoms. It is not the same as milk thistle, which also helps the liver. They work differently. My liver labs were normal, BTW. They were not elevated, so it wasn’t that I had an identifiable problem with the liver. Still, TUDCA was a game changer for me in stabilizing my symptoms and relieving pain from toxins.
Posted 1/17/2023 4:56 PM (GMT 0)
Binders help some people, but your situation is not uncommon. I've tried just about every over the counter binder recommended and I've never noticed any benefit. I've never tried the prescription binders such as cholestyramine.

In my experience, the only way I've felt better overall is through a successful treatment protocol (whatever that may be). Temporary relief from herx/flare/symptoms, for myself, can be achieved with different levels of effectiveness with sauna, epsom salt baths, exercise, cold therapies, and a general anti-inflammatory lifestyle. If a herx/flare is "deep" these methods are still not able to overcome the overall feeling of decreased well-being.

This has been my experience.
Posted 1/17/2023 5:00 PM (GMT 0)
Herbal protocols can take some time work but if it hasn't helped at all after 5 months I would look to make changes. A few things you could do:

1. Increase dosages to see if better effectiveness.
2. Decrease dosages to see if unwell feeling is due to treatment being too strong.
3. Experiment with removing or adding in herbs
4. Keep plowing ahead through the misery to see if the protocol helps in the future. It's tough to decide whether a protocol isn't working or not and whether you should give up or keep plowing ahead.
Posted 1/17/2023 5:25 PM (GMT 0)

Lymie24 said...
Herbal protocols can take some time work but if it hasn't helped at all after 5 months I would look to make changes. A few things you could do:

1. Increase dosages to see if better effectiveness.
2. Decrease dosages to see if unwell feeling is due to treatment being too strong.
3. Experiment with removing or adding in herbs
4. Keep plowing ahead through the misery to see if the protocol helps in the future. It's tough to decide whether a protocol isn't working or not and whether you should give up or keep plowing ahead.

Thanks for the advice. I think that the tinctures on the protocol are definitely hitting something, as I have felt significantly worse since starting it. You're right, it is hard to tell whether to abandon one protocol and move on to another.
Posted 1/17/2023 6:00 PM (GMT 0)
I agree with everything Lymie24 said. TUDCA could help relieve some of the misery as you’re plowing through. If you don’t feel any effects on a low dose after a week, increase the dosage. You can take as much as 1500mg a day. Most capsules are 250mg, so max would be 3 capsules 3x day.

I noticed a difference within 2 weeks. I had brief increases in symptoms followed by improvement, like herxing should be with treatment. Until that point, I just felt like I was herxing all the time with no relief.
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