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» LymeNet Flash » Questions and Discussion » Medical Questions » Morgellons.. any suggestions? Please!

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Author Topic: Morgellons.. any suggestions? Please!
bla
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I'm suffering with this Morgellons condition, currently mainly on scalp. The condition is relentless. Scalp is inflamed, sore, red, itchy, and lumpy(full of lumps and bumps). Plus, I'm going bald... huge bald area that continues expanding.

I've tried everything. Currently, I'm taking doxy, plaquenil, and mepron through the week, and Flagyl on weekends. The weekdays regimen doesn't seem to affect the condition at all.

The Flagyl is definitely doing something, but not quite sure if it's good or bad. My scalp feels better and worse at same time when I take the Flagyl, if that's possible. Seems that the Flagyl is at least aggravating the morgs.

I'm a 40yr old female with fairly long hair, which helps hide the red bald area, but I fear It can't be hid much longer, as it continues to get worse.

The back of my head is a real mess, and did I mention it's SORE! It's driving me out of my mind. So if anyone thinks they might be able to help, please do.

I need suggestions. If anyone else out there suffers with the Morgellons syndrome and has found an abx, or anything else that puts it to rest, please let me know what it is.

If it's a particular abx or other Rx med, I can let my LLMD know about it. He is about ready to give up on me b/c nothing is clearing my scalp so far and he's not particularly familiar with Morgellons. So please help me help him.

I heard about Ivermectin and suggested it to my doc, but he wanted to try the Flagyl first, which is where I'm at now in treatment. I'm hoping that if he prescribes the Ivermectin next that it really works like a charm, b/c I'm desperate for some real relief and clearing of inflammation.

Has anyone found other meds that have worked well at clearing up the condition (not just symptom relief, such as anti-itch). I'm hoping to find something that actually clears, or heals the condition. I'm going mad.. and BALD! thanks.

................................................

Breaking up your text into a couple lines for easier reading for many here.

[ 06-16-2014, 10:26 PM: Message edited by: Robin123 ]

--------------------
bla

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Razzle
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Antiparasitic meds and/or herbs are the only thing I've heard of that helps Morgellons...

As for why the flagyl makes it better and worse at the same time...could be herxing or could be flagyl is killing some of the parasites but at the same time promoting fungal infection on your scalp.

You might want to ask your doctor about antifungal meds in addition to the antiparasitics.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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rowingmom
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I thought of this site when I saw your post.

http://www.lyme-morgellons.com/

We are using multiple herbs recommended by Stephen Buhner to treat lyme/bartonella/babesia-like-organisms and are having a very good response. This protocol seems similar in many ways.

--------------------
13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement.

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Catgirl
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Ditto what Razzle said.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Kbone
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I suffer from the same and tea tree oil works wonders. Bought a bottle and put 15 drops in my shampoo. The crawling feeling has ceased and my head feels so good!!!!

--------------------
Diagnosed with Lyme 4/7/14

KB

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birdie67
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I just read about a woman that took MMS and her morgellons and lyme went away. If you are on facebook and search morgellons, her site will come up.
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tick battler
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I would definitely look into the gentle MMS protocol which is described in Kerri Rivera's book found on Amazon: Healing the Symptoms Known As Autism. This protocol heals autism along with many other things with which parasites are a factor. You can ask if others have cured their morgellons: Go to the closed facebook group: CDHealth. It is for adults doing Kerri's protocol for various ailments.
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tick battler
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Here's the facebook link I was talking about above:
https://www.facebook.com/groups/mojoother/

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TF
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A lyme doc who treats Morgellons has these sites listed on her webpage:

http://www.thecehf.org/

http://www.healthsciences.okstate.edu/morgellons/

I did see t gel (tar) shampoo on one of the sites as a recommended treatment if it is in the scalp:

http://www.thecehf.org/morgellons-treatment-scalp.html

Write to me privately if you want the doc's name. She has treated more Morgellons than other lyme docs.

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Ellen101
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Are you sure it's morgellons? I have scalp psoriasis. Itches like crazy.
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Robin123
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Pming you -

If psoriasis, I drank oxygenated water for a week and the psoriasis on my knees, elbows and next to my ears disappeared.

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bla
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Kbone, I use Vicks for temporary relief of itch and ache.. works good for "temporary" relief, about an hour's worth (put it right on lesions, too.. doesn't sting like you might think). It doesn't heal the skin, though. I wish I could find something to stop the progression of infection and heal the skin. It's scary to think how bad this might get. There seems to be no end in sight.

What I'm really searching for, I guess, is a quick fix - rapid healing/a cure! This is driving me MAD.

All these protocols with dozens of supplements is mind boggling and economically insensitive. Hoping for something simpler and cheaper. Then, who knows what the future might drive me to do. God help us all!

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bla

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bla
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tick battler.. thanks for the link

Ellen.. I'm certain this is Morgellons

TF.. I would love the doc's name. I will pm you.

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bla

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canadianmama
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Hi Bla,

This may sound out there, but thought I would share.

I have a friend who had morgellons in her hair especially.

Though a bunch of experimenting she ended up using a decorative fiber optic lamp (like this: http://glowproducts.com/ledcandleproducts/fiberopticlamp/ )
and she turned it on high and ran it over her scalp.

When she pulled it off her scalp it stuck, like static and she had to pull it out of her hair.

There were strange tiny egg like things stuck to the fiber optic threads.

She did that over and over and then bagged the lamp and threw it away.

Hasn't had any scalp crawly feeling in almost 10 months since.

Don't know if that is helpful at all, but it worked for her.

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nefferdun
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Here is a forum for Morgellons and the anti parasitic drugs they are using to cure it.

http://curezone.com/forums/am.asp?i=1675573

Dr. S in Washington DC treats it as well as lyme.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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Catgirl
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Not surprised about the parasites. They go everywhere.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Kbone
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Actually the tea tree oil pretty much stopped all of that for me which is why I mentioned it.

I was desperate! Had scalp sores and no matter how much I cleaned my head in the shower it still felt gross after. I felt like my head was on fire at times.

I am much happier now that I use it! My head feels much cleaner and although I still get the occasional itch it is like night and day for me.

--------------------
Diagnosed with Lyme 4/7/14

KB

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anuta
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This is from Alex Volinsky PhD presentation the "Rope Worm"
Morgellons is micro-myiasis.
Rope worms are associated with Lyme, autism, and Morgellons.

His favorite health options are water fasting, liver flushes, nosodes, upper-cervical adjustment, raw/vegan diet, hydrogen peroxide, chlorine dioxide, daily exercise, diatomaceous earth, zappers, and structured water. He wants to explore sodium thiosulfate, niacin with sauna flush, lucid dreaming, and blood apheresis.

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GretaM
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Would high quality Thieve's Oil, in a carrier oil like grapeseed help?

I used it on other lesions on my body (from TBDs) and it helps. Numbs it and also heals it.

Sorry you are going through this. I can relate to hair loss. Not fun [Frown]
[group hug]

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Judie
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I would try a coal tar shampoo (like t gel or DHS).

Hopefully that won't be as overwhelming as taking a bunch of herbs and an easy place to start. You can order them off amazon.

By the way, the coal tar did clear up a scalp condition I had. It didn't just kill the itching.

I used Denorex and it's strong. You have to make sure it's the coal tar one because they make different kinds.

T gel is gentler. I haven't tried DHS, but I really like their fragrance-free shampoo.

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Lymetoo
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Nizoral shampoo may also work.

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

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lostlyme
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It is too bad there used to be a site that had been up for few years about morgellons and a treatment that a lady had done .

Now all there is either these websites want to profit from it , or there is to much whacky so called disinformation .

I will keep looking for it .

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RC1
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I was thinking Nizoral too. I've been using it on my dog, he has the same thing, sores, hair loss, and itching. It's helping a lot.
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Tincup
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Now MY scalp is itchy! Wasn't itchy before I read all this. HA!

I don't know what would fix it, sorry, but could meds you are on- or herbs, supplements- be adding to the problems?

Hope you get some relief soon!

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

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CD57
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Did you have scalp twitching and crawling as well?
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Anxiety soldier
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I had itchy, flaky, scalp for a month or so. After I moved out of my moldy house it took a few weeks but seems to be gone now.

I didn't treat it with anything, just moving out of my house seemed to clear it up.

The dandruff chunks were so big, like large snow flakes, I had never seen anything like it. I never had dandruff before.

--------------------
Bartonella (Rifampin 300 mg 2x day, A-Bart, A-Iflam)
Toxic mold exposure (Cholestyramine 4x day)
Heavy metals
Marcon staph infection (Beg spray)

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ms dixie
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This killed scabies parasites for me when nothing else worked: sulfur powder ( from pharmacist $5.)
mixed with a skin lotion and applied to skin .Leave it on all day for three days if you cab. Some mix sulfur with Lubriderm .

You also might PM Ladyjenie who knows a lot about this issue.

There are many stories of morgellon's patients improving with fenbendazole at other health borads.

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bla
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Nefferdon said:

quote:
Originally posted by nefferdun:
Here is a forum for Morgellons and the anti parasitic drugs they are using to cure it.

http://curezone.com/forums/am.asp?i=1675573

Dr. S in Washington DC treats it as well as lyme.

This link was helpful. I'm going to try some of this. thx.

--------------------
bla

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bla
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quote:
Originally posted by Kbone:
Actually the tea tree oil pretty much stopped all of that for me which is why I mentioned it.

I was desperate! Had scalp sores and no matter how much I cleaned my head in the shower it still felt gross after. I felt like my head was on fire at times.

I am much happier now that I use it! My head feels much cleaner and although I still get the occasional itch it is like night and day for me.

I will look into this, too. Seems simple enough.. how can I not try it, right? [Wink]

--------------------
bla

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bla
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quote:
Originally posted by CD57:
Did you have scalp twitching and crawling as well?

CD57, Yes, I have experienced twitching and crawling, but most bothersome is itchiness and soreness.

The lesions are very painful, but lurking beneath the skin (or within the skin) is something foreign that causes inflammation and itchiness.

There seems to be clusters of tiny fluid filled pockets within the skin's layers. Really gross to think about what could be in there! YUCK! [confused]

--------------------
bla

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bla
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quote:
Originally posted by anuta:
This is from Alex Volinsky PhD presentation the "Rope Worm"
Morgellons is micro-myiasis.
Rope worms are associated with Lyme, autism, and Morgellons.

His favorite health options are water fasting, liver flushes, nosodes, upper-cervical adjustment, raw/vegan diet, hydrogen peroxide, chlorine dioxide, daily exercise, diatomaceous earth, zappers, and structured water. He wants to explore sodium thiosulfate, niacin with sauna flush, lucid dreaming, and blood apheresis.

anuta, hi.. how is Rope Worm infestation related to micro-myiasis? Isn't myiasis a fly larva, or maggot infestation? [confused]

--------------------
bla

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bla
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quote:
Originally posted by ms dixie:
This killed scabies parasites for me when nothing else worked: sulfur powder ( from pharmacist $5.)
mixed with a skin lotion and applied to skin .Leave it on all day for three days if you cab. Some mix sulfur with Lubriderm .

You also might PM Ladyjenie who knows a lot about this issue.

There are many stories of morgellon's patients improving with fenbendazole at other health borads.

ms Dixie, what are those health boards? I'd like to learn more.

--------------------
bla

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