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Question for MyJourney101 :)

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Posted 8/23/2023 12:53 AM (GMT -5)
Hi MyJourney101,

I hope I'm not putting you on the spot too much here! haha.

After reading your first post on this forum again, just now, I was wondering how you've been doing ever since?

We've had people with Morgellon's here over the years, so I just want you to know that you're not alone in this.

I think we also forgot to welcome you here, so I'd like to hereby say: a very belated welcome to the forum!

I noticed your current treatment is as follows: "ivermectin, Fenbendazole, Nitazoxanide, black walnut, cryptolepis, allicin, oil of oregano, curcumin, quercetin, vitamin C, vitamin D…etc."

So it sounds like you definitely know what you're doing already!

The cryptolepis was very strong for me! Have you considered adding some antibiotics besides the herbal ones that you're on?

In short, I just wanted to say hi and see how you're doing.

I hope that you have an amazing day ahead!
Posted 8/23/2023 7:40 AM (GMT -5)
Hi RainyCloud,

Thank you for reaching out to me and for welcoming me to the forum.

I’m still on an anti parasitic regimen (actually around the 6 month mark). Also, I’m on a strict diet (no gluten, low sugar, low dairy, organic foods, etc.)

I’m thinking that I may have leaky gut also; so I’m trying to heal that. I make chicken bone broth and take L-glutamine, collagen, etc.

I lift weights 3 times a week (and pray for excellent results over every workout) and walk our dog daily.

I’m looking to start adding other herbal tinctures in Sept. to hopefully really start kicking this Lyme out of my body more. I’m really not interested in antibiotics…I have seen a few friends who had terrible experiences with them (one who got c-diff.)

I was jogging last night with our dog and started getting into a fast pace & I may have overdone it a little because I had a sciatic pain up the back of my left leg…that doesn’t hurt this morning but both hamstrings feel achy. Lol

As far as my hands…well, that is my worst area…the morgellons seems to be most prevalent here. There’s a definite cycle…itchy red dotted rash (sometimes to the point I want to burn the palms of my hands with scalding water.)…then the skin splits open to let the fibers & black specks out…and then I have to either smear hands with peanut butter to soothe them & draw out/smother fibers…or maybe Vaseline…or soak them in water with peroxide…they get very dried out so then I get flaky skin that I constantly pick at or slather on more Vaseline or other ointments.

At the start of all this a couple years ago (After going to ER a couple of times & family dr) I didn’t know what this was so I went to a dermatologist…She took a skin biopsy & told me that I had eczema & wanted me to go on Dupixent…At this point I decided to “go it alone” and do my own research asking God for guidance.

Listen, we all know our own bodies & Never in my life did I have problems with food allergies or rashes like I was seeing…And most doctors don’t seem to have a clue…And don’t seem to want to get to the source.

The only thing that really seems to help with my rash on hands is a steroid ointment my dermatologist prescribed (Triamcinolone Acetonide, 0.1%) However, I know anything “steroid” may not be good…it may be just making morgellons go into hiding…but I just am so desperate I need relief.

Sorry, didn’t mean to have such a long post…but I guess it was time for me to “open up”…My husband sees some of the pain I’m going through but I keep a lot bottled up & act like it’s not bothering me too much.

Thanks again RainyCloud…I’m ending this with tears in my eyes.

MyJourney101

2 Chronicles 7:14

Post Edited (MyJourney101) : 8/23/2023 9:40:34 AM (GMT-8)

Posted 8/23/2023 12:53 PM (GMT -5)
Hi MyJourney101,

It's nice to hear back from you! I'm truly sorry that you are struggling. Please don't feel bad about opening up. We've all had our fair share of sharing our stories on this forum. These diseases will drain the life out of you and sometimes you just need for people to hear about it.

I'm gluten-free too! Yet, I wish I could say the same about the organic foods, haha. Prices are just so expensive these days.

In regards to leaky gut, we have a few members here that have experience with that, so I hope that they will chime in. That said, it sounds like you already know what to do. The things that you listed (bone broth, collagen etc.) seem like a great idea.

I'm very impressed you are still able to lift weights and look after your dog, that's great! Yes, the dogs can get kind of wild sometimes and before you know it you are running way too fast, trying to keep up.

I agree, that's really the downside with antibiotics, there's always that risk of bad experiences. On that note, I hope others will chime in also because we have some members that are doing herbal protocols.

That's so terrible about your hands. I have some very limited experience with Morgellon's so I don't think I can give any tips other than to let you know that you can get rid of it. And from what it sounds like, you are already working on achieving that goal.

We do indeed know our bodies best. It's (sadly) no surprise a conventional doctor didn't recognize the Morgellons and told you it was eczema. I kind of think as eczema as the "catch all" when dermatologists don't know what something is. We have a few of those labels in Lyme disease also, as you might already be aware of.

I'm not sure how strong 0.1% is in terms of Triamcinolone Acetonide, but I can say that some doctors actually use low-dose steroids in Lyme patients. The trick is to only use as much as your body would make regardless. So who knows, maybe it's negligible. Also I agree that, when you need relief that badly, there's really not much else you can do.

I will say a prayer for you and I hope others will chime in with any ideas about the treatment part. Although, it seems like you are on track already smile
Posted 8/23/2023 2:39 PM (GMT -5)
Thanks for the prayer RainyCloud…I greatly appreciate that…and your response.

Yeah, I know what you mean about the prices of organic foods.😐

I also remember that my dermatologist wanted me to go for allergy testing…you know the Skin prick (scratch) test: they use a thin needle to prick the skin on your forearm or back with 10 to 50 different potential allergens…I ended up going for bloodwork that looked for food allergies & a northeast allergy panel…Everything came up “Normal”…But yet I obviously have issues with food now…And Never did before.

I’m thinking…GMO’s and weed killers sprayed on foods may be the culprits.

Yes, if anyone else has ideas on some good treatment options feel free to chime in.😊

MyJourney101

2 Chronicles 7:14
Posted 8/23/2023 2:58 PM (GMT -5)
the two thoughts i have are as follows

1, i know the steroid give you some relief short term and you must be desperate for that - so i do not mean to add you your worries at all - but i think topical steroids used long term are actually likely lead to further skin problems - skin thinning is one that the warnings usually mention - which could be a problem later with your hands - so i would really do your best to avoid using them if at all possible.

the other issues with steroids and lyme is that they have been shown to suppress the immune system
- even when used topically - and this causes higher numbers of spirochetes to grow in the infected tissues - i am sorry to say this likely to be bad for symptoms long term - even it it helps in the short term.
for info - there were some mouse studies showing this effect that were discussed on the forum recently, and its long been known that systemic steroids in general lead to worse outcomes for Lyme patients ( they were tried in the early days so are rarely used now). as Rainy says - some LLMD's do use term very carefully to help certain patients - but its a balancing act and usually only used while giving strong antibiotic treatment at the same time.

2, especially given the above - i know you will be desperate for possible alternatives - the things that come to mind from my reading around the subject are :
dapsone cream - this is a powerful antibiotic - being used systemically for lyme by some prominent LLMDs - see Dr H - and his double dose Dapsone protocols - but i have also heard it is used for Morgellons patients as a topical cream - perhaps 5% concentration in a moisturising type base.
(i think i read the Saverly lady uses it for Morgellons)

Dapsone is available inexpensively via online pharmacies - and compounding pharmacies will also produce creams to order -
topical antibiotics do not have the risks of C-Diff or microbiome damage that oral ones do.
i have some Morgellons like issues on my shoulders and arms - i considered making my own from dapsone tablets as a trial.

the other possibility i can think of is topical essential oils - you will have to dilute them - and experiment cautiously - as your broken skin is likely to be sensitive - but i have spoken to others that find topical essential oils useful - and there is good science to back up that they are very effective against Lyme and bartonella ( the organisms thought to be most likely to be involved in Morgellons) - ref studies of oregano oil, clove oil, cinnamon oil etc by Zhang et al at Johns Hopkins

I hope its some help

all the best!
Posted 8/23/2023 3:38 PM (GMT -5)
Hi Garzie,

Yes, I was aware of the problem of thinning skin with long term steroid use…And the suppression of the immune system. They both are a concern for me…However, I did not know about the higher numbers of spirochetes that will grow in the infected tissues…(but that would make sense.) I was really hoping there wouldn’t be such a bad reaction…because this ointment was really making my hands look & feel better. I also wasn’t aware of the bad outcomes for Lyme patients who use them…thanks for this information.

I think that I might look into the Dapsone cream…I appreciate that tip also.

As far as essential oil, Yes, I have used cinnamon essential oil early on when my rash was on the backs of my hands and forearms…I think it did help. It just seemed to take long & very messy…I used to put it on before I went to bed & I ruined some sheets. 😂 However, I’m thinking I’ll try that on my hands again to see if it helps.

I put some oregano oil on my hands the other day and it burned a lot…I had to wash it off because of broken skin.

Thanks again Garzie.

MyJourney101

2 Chronicles 7:14

Post Edited (MyJourney101) : 8/23/2023 1:38:06 PM (GMT-8)

Posted 8/23/2023 5:14 PM (GMT -5)
this is the zhang study showing activity for carvacrol / oregano essential oil against Lyme - there are others for bart and Babesia too - so it really is quite broad and powerful - even against persister cells where abx do not tend to fare very well

https://pubmed.ncbi.nlm.nih.gov/29075628/

however, like many essential oils it is quite aggressive to the skin undiluted
i have used it on my scalp without issue at 10 drops in a tablespoon of coconut oil - so perhaps that might give a rough guide for dilution - perhaps start at 1/2 this and see how your skin reacts
cocoanut oil seems to have some mild antibacterial properties so perhaps that's a good option for a carrier

i hope you find some relief
Posted 8/23/2023 6:25 PM (GMT -5)
Thanks for that link Garzie.

I used Jojoba and avacado oils for carriers already. Maybe I’ll try the coconut oil because of it antibacterial properties.

I think I used to put around 5 drops of the essential oil in carrier oil.
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