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» LymeNet Flash » Questions and Discussion » Medical Questions » Why does Actos make me feel so much better?

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Author Topic: Why does Actos make me feel so much better?
bugabooboo
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I started the Actos/Cholestyramine protocol a few weeks ago. After a few days on the Actos alone, I felt better than I had in years. Then I started the Cholestyramine and I was thrown into a severe herx. I couldn't take the herx, so I stopped the Chol. after only 4 days.

I kept on taking the Actos at 1/2 the dose.

Why do I feel better? My blood sugars have been normal.

Is this all about TNF alpha?

I did a search, but just can't get it.

Is there something "natural" I could take instead of the Actos?

Thank-you and Happy Fourth of July!!!

Bug

--------------------
Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom

Posts: 343 | From Northcentral Iowa | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
henson2
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Hi Bug,

Actos is helping me, too.

I was having severe hypoglycemia episodes, but even checking my blood sugar on the glucometer, I was in the low but still normal range.

The Actos is the one thing that has helped these horrible hypoglycemia episodes. I no longer wake up shaking, or have terrible sx when I become hungry. It gave me a significant part of my life back.

My integrative Dr. told me to double the dose but I did not feel so good on that -- the lower dose (15 mgs) helps the most.

It is a drug for diabetics, but my integrative Dr. said it actually helps regulate blood sugar, not only for diabetics. The mainstream Endocrinologist I saw ridiculed that idea and told me to get off it. But I'm staying with what makes me feel much better!! Those hypoglycemic (or whatever) episodes were truly hellish.

Maybe the Actos keeps us from having huge swings/changes in blood sugar levels. Altho why would we be having that?

All I can tell you is that 15 mgs has made a world of improvement for me. I no longer dread waking up every morning. (I used to feel so weak I could not stand up, and would physically shake. That is gone now).

I did not know about the cholestyramine protocol. What is that?

What is TNF Alpha?

Warmest wishes for feeling better!
[Smile]

Posts: 1067 | From East Coast | Registered: Dec 2000  |  IP: Logged | Report this post to a Moderator
SForsgren
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From Dr. S:

Actos:

pioglitazone, one of the thiazolidinedione group of drugs. FDA approved to help with treatment of diabetes, it is also has anti-inflammatory effects by blocking the cyto- kine nuclear receptor activity and thereby lowering elevated levels of leptin, MMP9, PAI-1. It may have benefit in treatment of multiple chemical sensitivity (MCS) if the MCS is diagnosed early. Actos is one of the most useful of the medications of the Biotoxin Pathway

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Be well,
Scott

Posts: 4617 | From San Jose, CA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
bugabooboo
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So Actos is really a "one-of-a-kind" chemical? Nothing else like it? Especially in the herbals?

As I understand it there is no generic either and it costs $175.00/monthly. (I just lost my insurance.)

"The Biotoxin Pathway", huh? So if it helps, then you may have hypoglycemia, elevated toxins, and/or chemical sensitivities? (Not that I haven't suspected all of them.)

What I know is that inflammation, headaches and the hunger/shakiness is so improved.

I do FIR sauna, bowel clenses, O2 water, Bentonite, charcoal, MSM and lots of other stuff to detox. Goodness how could I have toxins left in me?

I have been rifing pretty heavily for 9 months and having some huge herx's.

So, does the Actos neutralize these toxins and help cure or is it simply a palliative treatment or symptom cover up that you will pay for later?

henson2, I'm so glad to hear that you were helped by this.

Why doesn't everybody take Actos?

Thanks.

Bug

--------------------
Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom

Posts: 343 | From Northcentral Iowa | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Why doesn't everybody take it?? I don't know, but for ME it gave me terrible stomach pain. I only took a few pills.

I guess you had a bad case of hypoglycemia???

I'm SOOO glad it's helping you!! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

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riversinger
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bugaboo, not everyone should take Actos, because not everyone has the specific imbalances that are listed in the quote Scott posted. If you don't have those issues, then it can cause problems. Also, some people, like Lymetoo, have negative reactions to it. I don't know if Lymetoo had high MMP-9, leptin, or PAI-1, so maybe she didn't need it. Someone can have neurotoxin issues, yet not need the Actos.

It isn't a cover-up, per say, but it isn't the entire answer. It reduces certain inflammatory problems so that other treatments can work better. Actos does not help detox the neurotoxins. It reduces inflammatory reactions to the toxins, but if the toxins aren't removed, the inflammation will come back when you stop the Actos. For me, Actos helped with peripheral neuropathy, probably because I had high MMP-9.

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TickSick
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I'm really glad to read about how other people have responded to favorably to Actos.

I used it a few times as a preliminary to taking cholestyramine.

The first time I was Rx'd CSM I hadn't been given an Rx for Actos as well, and I after a few days using the cholestyramine only, I became far too sick to be able to continue using CSM.

After staying away from the CSM for a few weeks I followed Dr. S.'s protocol for the way that LYME PATIENTS should introduce CSM, which involves using Actos several days, first. That time, I had no problem with the CSM.

I don't know how Dr. S. ever figured out that Lyme patients needed to precede CSM by taking Actos first, but he sure was right on target! (I think he may have called Lyme patients' responses (when not using Actos first) an "intensification reaction," or something like that).

In his book, "Desperation Medicine," he contended that for some reason Lyme patients needed to use Actos, while non-Lyme patients were able to take CSM directly to help rid their body of neurotoxins. He contended that Lyme patients get very sick if they didn't use Actos first, and I'm certainly an "on-target" example of that situation.

What is interesting is that my insurance company apparently ran a computer program against my prescriptions, picked up on the word "Actos," then had a recording call me at home about my "diabetes care." Plus it also sent me a letter about the importance of regular care for diabetics!

I was incensed! I've never been diagnosed with diabetes, and resented the fact that a computer program, not even a doctor who had ever seen me, was diagnosing me with diabetes because of my having been prescribed Actos.

I called the insurance company and asked to be removed from their surveillance program. I was told I would be, but later, two more times I ended up receiving similar pre-recorded phonecalls and letters. I wonder if the same thing would happen if and/or when I were prescribed Actos again.

Anyway, the first time I used Actos my feet and toes that had been numb and hot/cold for the preceding few years, were infused with a feeling of warmth and normalcy. I was surprised that my feet almost felt human again.

Of course the Rx was only for something like a ten or less day (I can't remember specifically) supply just as a precursor to the CSM, so the effect wasn't permanent.

However, now many years later, after reading this thread, I'm wondering if maybe a longer-term prescription might actually help remediate the peripheral neuropathy, which has been worsening alot lately.

It's certainly something to consider.....

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bugabooboo
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TickSick,

It sure can't hurt to try.

I have been taking 1/2 of a 45 mg tab of Actos.

Today, I restarted CSM but only 1/4 teas. I figure something is better than nothing.

I continue to be amazed at how much better I feel with this one medication.

I can't afford to continue it for long at $175.00/month.

I wonder if one of the generic anti-diabetic meds would do the same?

Thanks for your reply.

Bug

--------------------
Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom

Posts: 343 | From Northcentral Iowa | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
   

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