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» LymeNet Flash » Questions and Discussion » General Support » Morgellons/Lyme

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Author Topic: Morgellons/Lyme
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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I have just updated the Maryland Lyme Morgellons Disease page. (I also had it reviewed by experts for accuracy.)

These patients have a really tough row to hoe and could use our help with their educational efforts.

I watch the regular beatings they get from doctors and others who aren’t informed (and are quite cruel with their comments) and it is truly sad.

Thanks for reviewing and sharing!

https://sites.google.com/site/marylandlyme/tick-borne-diseases/morgellons

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Hoping,

I saw the post in medical, but have serious concerns about the protocol being anything that would cure Morgellons. In fact, I know it won't.

1. Unfortunately, we are being heavily exposed now to some very unprofessional people claiming they have Morgellons and offering up some type of homemade cures. Some even toss in some science to make their claims seem to be more legit.

Even our doctors are being sent this kind of "stuff" and it is nothing more than annoying and/or dangerous to those who take the bait.

2. The poster just joined LN and within 4 days of starting this protocol reported they have managed to cure themselves of Morgellons after countless patients and doctors and researchers across the globe have not been able to even identify what exactly it was until recently.

And certainly there is no known universal cure for Morgellons, not even close.

It has been linked to Lyme disease and if the sudden intake of good foods could cure Lyme there might be a reason to take a second look at the post, but eating certain foods won't work as we all know.

3. Most likely the poster, IF any of the post is true at all, is feeling so much better because they just cut out all the garbage they were putting in their body and have replaced it with more nutritious foods and a healthier lifestyle.

That WILL make people feel better no matter what their other condition may be.

4. I can't in good faith share/promote information that I know has no scientific basis at all, or has not been shown clinical to be safe and/or have good results, and from someone who reports to have a cure for a disease that has stumped even the brightest people on this planet for so long.

Additionally, some of the steps taken in that post can be dangerous for some people and I couldn't knowingly promote that.

To be fair, I sent the post to an expert in the field (yesterday I believe it was) to get an opinion. Waiting a reply currently. If they feel there is any merit to the posters claims I will surely let people know.

I so much appreciate you alerting me to this post and thank you for sharing. I also hope you understand where I am coming from and know it is nothing personal against the poster or any of those replying.

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

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I had to about laugh when I read this post as a cure for Morgellon's which they have had for about 2 months. Ha!

Can you imagine figuring out so quickly that you had Morgellon's and figuring out how to cure it so quickly also? The poster must have the highest IQ on the planet.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
lookup
LymeNet Contributor
Member # 44574

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People can think whatever they like but I will second the amazing fizzing NAC from Germany. That product saved my life from double pleurisy/lung infection!

[ 04-08-2017, 11:51 AM: Message edited by: lookup ]

Posts: 764 | From Northwest | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
jory
LymeNet Contributor
Member # 50029

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Four days isn't enough to gauge the healing of a mosquito bite, never mind morgellons. Every time I try a new protocol I ride it for a full month at minimum to see if it's worth continuing.

My last effort - NB Protocol, which had positive effects at the start, had to be aborted at 25 days or so because it felt like death. I'm sheepish to even try it again. NAC was in there, and although I continue to use it daily it's no panacea. I still have the crystals, fibers, and strange things coming out of my skin.

The most helpful things so far are:

Topically for parasitic issues - this stage is over since Jan 2016:
- Rosemary oil
- Benzyl Benzoate 25% "Dermosan BB" (head use only!)
- Potassium Permanganate baths

Topically for healing lesions:
- Dudu-Osun soap

Internally:
- 1 cup water w/ 1tsp baking soda twice daily
- Testing my iodine levels with BodyBio Mineral Test Kit (#9) and supplementing my iodine blood stores as needed
- Colloidal silver 40ppm 4x daily (homemade)
- High potency probiotic (Bio-K)

Edit: revised list

[ 04-14-2017, 03:54 AM: Message edited by: jory ]

Posts: 289 | From Montreal, Canada | Registered: Mar 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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I deleted my post, and yes, I understand your point (no offense taken!). I'm just trying to help.

Please keep us posted what information you find out.

[group hug]

Posts: 8981 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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Always .. check out the date the person joined LN. It will give a clue as to what is going on.

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

Posts: 96223 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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