posted
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.
-------------------- bla Posts: 59 | From Pennsylvania | Registered: Oct 2013
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
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. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
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. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ditto what Razzle said.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
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 Posts: 87 | From Townsend, MA | Registered: May 2014
| IP: Logged |
posted
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.
Posts: 486 | From USA | Registered: Jan 2012
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
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.
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
Write to me privately if you want the doc's name. She has treated more Morgellons than other lyme docs.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Are you sure it's morgellons? I have scalp psoriasis. Itches like crazy.
Posts: 1747 | From United States | Registered: Dec 2011
| IP: Logged |
If psoriasis, I drank oxygenated water for a week and the psoriasis on my knees, elbows and next to my ears disappeared.
Posts: 13102 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
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!
-------------------- bla Posts: 59 | From Pennsylvania | Registered: Oct 2013
| IP: Logged |
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Not surprised about the parasites. They go everywhere.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
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 Posts: 87 | From Townsend, MA | Registered: May 2014
| IP: Logged |
posted
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.
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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 Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
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.
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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?
posted
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.
Posts: 153 | From Huntsville Al | Registered: Jun 2013
| IP: Logged |
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?
-------------------- bla Posts: 59 | From Pennsylvania | Registered: Oct 2013
| IP: Logged |
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?
-------------------- bla Posts: 59 | From Pennsylvania | Registered: Oct 2013
| IP: Logged |
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 Posts: 59 | From Pennsylvania | Registered: Oct 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[Wink]](wink.gif)
![[confused]](graemlins/confused.gif)
Printer-friendly view of this topic