posted
I'm dealing with late stage lyme, and I've been too toxic to tolerate treatment to kill the bacteria. I get a glutathione IV every 10 days, but I clearly need a lot more detox.
First, has anyone done Dr S's Cholestyromine protocol? I would like to hear how it worked for you.
I think that I should be on the protocol, but I am concerned about actos. I believe I'll need to manage the cytokines which is the purpose of Actos,but Actos seems to contribute to heart failure. My dad had congestive heart failure, my mom has it, and I have had heart symptoms such as skipped beats (it showed up on a stress test, though I'm told I don't have heart disease), shortness of breath, rapid beats,etc. Actos is supposed to put weight on you, and I know people who gained a lot of weight on it. I'm already overweight and desperate to lose it.
posted
I think it's taken while you're on CMS, which could be a long time. Or am I mistaken?
I do think I'd be one who would need that anti-inflammatory help.
What side effects did you have? And did the CMS help you?
Posts: 10 | From Florida | Registered: Jan 2010
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Actos made my sugar drop to 30 and it took a week to get back to normal after I stopped it. I felt horrible, weak & shaky.
Welchol is an alternative to CMS but not as effective.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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WildCondor
Unregistered
posted
Actos was bad news for me too, it dropped my blood sugar to 22 and I was in a daze for 4 days. I would avoid it and just take the Questran and make sure you just space it our from meds.
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Keebler
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posted
- Dr S's Cholestyromine protocol?
I could not do it. I gave it many tries. I had serious reactions to both Actos and cholestyramine (plain, no aspartame added).
An excellent alternative to Actos (regarding lowering cytokines): Stinging Nettle.
Alternative to Cholestryramine: Sarsaparilla (Smilax) which also lowers inflamatory cytokines.
Carob Root Powder, too, is an endotoxin binder. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- Quercetin might also be considered to help lower cytokines as you ask your LLMD about this.
. . . Stinging nettle leaf is bitter in taste and cooling in action. It cleanses the blood. Nettle seed nourishes and removes toxins from the kidneys. . . .
* Nettle leaf extracts reduce inflammation, in part, by suppressing the release of inflammatory cytokines. They do this by blocking a chemical inducer known as NF-KappaB, which alters gene expresion. This may be one explanation for the beneficial efffects this herb has exhibited in rheumatoid arthritis (Riehemann et al., 1999).
* One set of in vitro experiments on live blood using extracts of stinging nettle leaf exhibited its ability to slow down the inflammatory cytokine response caused by endotoxins.
In the same experiments, when there was no endotoxin present, the nettle leaf actually stimulated an immune response. Researchers believed these results could explain the positive effects of this extract in the treatment of rheumatic diseases (Obertreis B et al., 1996). . . .
- Full chapter at link above.
From ``The One Earth Herbal Sourcebook'' (Tillotson, et.al.)
SARSAPARILLA ROOT (Smilax species) is sweet and bland in taste, and neutral in action. It removes toxins from the bowel, and reduces inflammation and dampness from the blood, liver, urinary system and skin. . . .
- much more at link above. From: The One Earth Herbal Sourcebook (TIllotson, et.al.)
==========================
There is a six page chapter on Smilax in this book - you'd want to read all of that before using. Tiny doses are best at first as it can cause some rumbling in the belly and some sleepiness.
As Smilax is used in small doses, it can be added to carob root powder for a fuller effect. With LOTS of water throughout the day.
Also required to avoid constipation with Smilax and Carob: a HIGH FIBER DIET. Flax seed meal is good to add but at times separate from the sarsaparilla.
============================
CAROB ROOT POWDER - That's another whole search and I don't have a file page on that, I just go with my memory. I do know that it captures endotoxins in the gut but don't recall the source of that detail. You can do a search at the same links above and at google for literature on that.
To prepare, mix (?) teaspoon or more of carob in a small amount of water, stir into a paste and add more water, hot or cold. You can add a dash of stevia (from a plant source but never any artificial sweetener)
You can stir into the paste a small amount of Smilax, but then I would not use stevia. I'm not sure, but it could change the nature of smilax.
Search Google to find a good source: "Organic Carob Root Powder"
GUGGUL is also an alternative to cholestryramine. Both are resins. That, too, is another whole search and I may have file notes but have to stop now. I'll check later on that. -
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Keebler
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posted
- You might ask your LLMD about a good LL ND (naturopathic doctor).
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc. -
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Keebler
Honored Contributor (25K+ posts)
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Guggulsterone, a constituent of Ayurvedic medicinal plant Commiphora wightii (mukul myrrh)
Cardiovasc Drug Rev. 2007 Winter;25(4):375-90.
Therapeutic effects of guggul and its constituent guggulsterone: cardiovascular benefits.
Deng R.
Department of Biomedical and Pharmaceutical Sciences, College of Pharmacy, University of Rhode Island, Kingston, RI 02881, USA.
Oleogum resin (known as guggul) from the guggul tree, Commiphora mukul, found in India, Bangladesh, and Pakistan, has been used to treat various diseases including hyper-cholesterolemia, atherosclerosis, rheumatism, and obesity over several thousands of years.
Guggulsterone isolated from guggul has been identified as the bioactive constituent responsible for guggul's therapeutic effects. Since the first study demonstrating the therapeutic effects of guggul in an animal model in 1966, numerous preclinical and clinical trails have been carried out . . . .
. . . The cardiovascular benefits of the therapy are derived from the multiple pharmacological activities associated with guggul or guggulsterone, notably its hypolipidemic, antioxidant, and antiinflammatory activities. . . .
. . . Such upregulation of BSEP expression by guggulsterone favors cholesterol metabolism into bile acids, and thus represents another possible mechanism for its hypolipidemic activity.
Guggulsterone has been found to potently inhibit the activation of nuclear factor-kappaB (NF-kappaB), a critical regulator of inflammatory responses.
Such repression of NF-kappaB activation by guggulsterone has been proposed as a mechanism of the antiinflammatory effect of guggulsterone.
. . . It also has significant anti-inflammatory properties (Pandley et al., 1996). . . .
. . . It is my opinion that guggul should not be used by itself in this concentrated form, but is best used as part of complex formulations. . . .
. . . Guggul gum in its traditional form is almost always used in combination with triphala and/or guduchi stem (Tinospora cordifolia). Both of these have strong anti-poison, anti-oxidant, and anti-inflammatory properties. . . .
- Full chapter at link above.
From ``The One Earth Herbal Sourcebook'' (Tillotson, et.al.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler, thanks for all of the info. I do have a lyme ND that I consult with out of California. She has me on smilax, which helps ever so slightly.
She also gave me an herbal forumula to add but it really bothered me. She also gave me PCA-RX to bind toxins but I had severe herx with it. She wants me to try again though. I've just wondered if I should just get on Cholestyromine and deal with it.
I'm thinking I should be on anything that's anti-inflammatory now before I do the detoxifiers.
I've tried stinging nettle a couple of times for allergies and for some reason it bothers me. I have Buhner's book so I'll dig it up, and I'll look at the other things you've suggested. Thanks so much.
Posts: 10 | From Florida | Registered: Jan 2010
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Keebler
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posted
- I'm glad to hear that you have a ND. I do hope she is ILADS-educated and completely lyme literate.
Also know that while many things "help" nothing seems to make us feel all better all at once. It's still a long and bumpy road and sometimes, just some progress or gentle easing up of symptoms is the best that can be expected for long stretches of time.
Still, it's always good to know that we're on the right path and it's often hard to know for sure.
Turmeric (or the stronger Turmeric EXTRACT, CURCUMIN) is good for many things. If you have gallbladder issues, it's best to stick with the Turmeric in low amounts. Curcumin can be too strong sometimes for a hot gallbladder.
You might just try searching general information on cytokines and see what comes up as helping to reduce those.
As for the smilax, as it may help you "slightly" still be sure to stick to a low dose, or research the range. You'd not want to take too much of that.
I also had a horrible reaction to PCA-RX - and it took the lining right out of my mouth. For more about heavy metals, see posts by GiGi and Marnie.
posted
PS.. I was only able to take CSM for about 2 months.. then we tried Welchol.. Both did my stomach (or gallbladder?) in. Just couldn't do it. It only helped for the first 10 days, then just made me miserable.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Lymetoo - what type of discomfort were you having? Was it burning, pain...? Dr S has people take a med to counter reflux, and constipation also has to be countered. Were you taking anything for those issues?
karenl
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posted
I did not take actos but lots of cholestyramine (pure powder)and I am taking it even now at lower dose. Start with 1/2 or less capsule and work your way up very slowly.It takes weeks to get to a higher dosage.
If you are very sick, you have to start anything with tiny dosage. As soon as I understood this I recovered a lot.
Start with always one drop or a slice of a tablet even if other people tell you it is subclinical. It is the only way for you to get better. I needed four month to get to one tablet of doxy.
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Keebler
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posted
- IamFree,
Be sure the brand of cholestyramine (or type) is free of aspartame. Sadly, some of the "lite" versions contain that. Aspartame is neuro-toxic. No artificial sweetener is good. -
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Keebler
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posted
- As for countering reflux, DGL is the safest thing to use. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Iamfree: Lymetoo - what type of discomfort were you having? Was it burning, pain...? Dr S has people take a med to counter reflux, and constipation also has to be countered. Were you taking anything for those issues?
**edited out Dr's name** [/QB]
I was on Prilosec at the time. I took sorbitol to help with constipation. Maybe it was the sorbitol that made me ill!
---it caused a lot of upper right quadrant pain---
At any rate, I got tired of torturing myself for nothing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TerryK
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Member # 8552
posted
I've been on cholestyramine and actos for 4+ years. Actos the whole time, cholestyramine off and on but mostly on. They both seem to help me quite a bit.
Actos is a gene therapy of sorts according to Dr. S. of "Mold Warriors". Starting on page 89 of mold warriors he talks about gene therapy for biotoxin illness by using Thiazolidinediones (TZD) - actos or avandia. Even after the genes are turned on by biotoxins you can decrease leptin, TNF, MMP-9 and PAI-I after biotoxins cause them to be overproduced. They will also turn on the gene needed to increase VEGF production. All things that become deranged with biotoxins.
I believe that actos helped me quite a bit but I need to get off due to weight gain and other possible issues. My primary doctor told me that the FDA is apparently considering taking actos off the market. They've recently decided to keep avandia on the market but both drugs probably have similar concerns.
I am still researching to try to find replacement for actos but in all likelihood it will take more than one product to replace it.
I'm not finished researching but so far I've found a line of products that could prove very helpful in dealing with some of the issues that actos helps. I've started taking the following products from a company called Precision Herbs. http://www.precisionherbs.com/ MMP-9 VEGF LEPTIN
Vitamin D status seems to be tied to MMP-9 so it is probably important to make sure your Vit D is at a reasonable level. High levels of MMP-9 predict more lesions in MS patients and is implicated in the disruption of the blood brain barrior in MS patients as well. Lyme is implicated in MS.
Natural TNF inhibitors are curcumin and catechins found in green tea but I'm sure there are more.
This is a start. I'll try to come back as I find more information.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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posted
Iamfree - I don't know what your level of knowledge is about lyme toxins or specifically what you are trying to accomplish with actos but I want to include more info in case you or anyone else needs it.
Those who have the HLA genotype that makes it hard to get rid of borrelia (and possibly mold and other) toxins may remain sick without specific treatment such as cholestyramine to get rid of those specific toxins.
From the sounds of it you may have a problem with biotoxins. That said, many who are dealing with lyme toxins will likely have issues with TNF, leptin, MSH, VEGF, MMP-9 etc..
posted
Thanks so much everyone! There's a lot of good information from each of you. I was really discouraged but now I'm feeling more hopeful!
I'm thinking that dealing with this toxin issue more agressively could really make a difference for me. I'm going to spend some time reviewing all the information here, and may have some follow up questions. Thanks again!
Posts: 10 | From Florida | Registered: Jan 2010
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posted
TerryK - I can't find the VEGF on the precision herbs site, and they don't make it easy! I did a search and it doesn't come up. Would you mind giving me a link to that one?
Thanks so much!
Posts: 10 | From Florida | Registered: Jan 2010
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