Living with Morgellons-Treatment Suggestions

[carla]

Becca I have some of that here .Not Ben Gays but another brand.
I will give it a try.
The suggestions are not something that will work overnight .
They can take months but should be taken anyway no matter what treatment you decide on.
Disease needs an acidic body to thrive.

[lotr]

Hi Everyone.

I'm very new to this site but I posted my story on the introduction page and I mentioned that I would post my personal treatment protocol on the treatment page. I have read the suggestions above and all of them sound helpful and indeed healthy. Most people should be on a very good supplement program given the abhorrent state of our modern food chain. I cannot comment on the topical protocols mentioned as I have not tried them so I will just write what I know.
I have been suffering for almost 15 years. I was an extreme health nut and homeopath enthusiast before becoming ill. I don't think the 'bug' cares how healthy you are but taking care of your health can definitely help your immunity and your outlook.
After going through many cycles of severe illness and remission I think I can say that this bug just does what it wants to do and you're not going to stop it so whatever relieves your immediate suffering and improves your quality of life is what you should do. For me that has become a western medicine protocol.
External:
1. Daily whole body washing with Selsun medicated shampoo. This helps to dry out and close the lesions on the skin. Slather it on severely effected areas and let it sit for a couple of minutes. It seems to slow down the spread of the lesions as well.
2. Apply generous amounts of triple-antibiotic ointment to open lesions to speed healing and prevent secondary, opportunistic infection such as staph.
3. Use the strongest hydro cortisone cream you can get and rub it into the itching or swollen closed lesions to reduce itching and swelling. Do not scratch or pick as this will activate the "bug" and make it worse! (This organism has a common property of many micro organisms called quorum sensing.)
Home hygiene: I have not noticed any difference in the severity of my illness when I meticulously clean my home and linens and when I do not but if it makes you feel better, do it. My husband has not been infected and we sleep in the same bed. I intuit that the contagion is not in the artifacts that the bug produces that come from the body but it is a microscopic organism that enters the body by being consumed or in some other way enters the blood stream by opportunistic infection. (Yes, I do believe that this is a man made bio/nano tech organism.)
Internal:
1. Serotonin re-uptake inhibitor. This has the multiple effects of treating the depression caused by the effect of the organism on the CNS, helping symptoms of Orthostatic Intolerance (OI), aiding in sleep and soothing the troubled nervous system.
2. Tegretol. This is an anti-convulsive medication but it is also a mood stabilizer. This prevents the serotonin re-uptake inhibitor from causing a rebound manic state. It also soothes the nerves and has quelled most all of my neurological symptoms. (I can say this with confidence after having taken it, gone off of it and had the symptoms return nearly immediately then, going back on it again and having the symptoms disappear.) If you have had severe burning nerve pain all over your body as I have (severe neuralgia) this will stop it. It also helps the stinging sensations.
3. Pain medication. This is not an option for everyone but someone who has suffered as much as I have with the continual muscle and nerve pain will tell you that it can drive you to the edge. Get a referral to a pain management specialist. Try whatever they will give you and go back until you find the one that works with side effects you can tolerate. I use Norco. I use this in conjunction with NSAID pain relievers and it's a double whammy. I set my alarm early and roll over and take these as soon as my eyes open. I lay back down and wait for them to take effect so I can get up and go to work.
I also use Compazine for the headaches which has the added benefit of killing the nausea that can plague you if you suffer with this illness. I have also tried morphine but I did not find that as effective as my current regimen.
I take pain medication 3-5 times daily, depending on my severity of pain, and am under close Dr. supervision.
4. Diuretics. One of the symptoms of this illness is edema. Ask you Dr. for a prescription diuretic and take it as needed.
5. caffeine. Not everyone can tolerate it but I would be lost without it. It is often suggested for people with MS to help with fatigue. If you have to get up and go to work because no one is going to take care of you, you learn to use anything that works to keep you as alert and upright as possible.
6. Sleeping medication. Severe illness with this "bug" can cause extreme wakefulness. I suffered so severely with this I went for nearly a month without any real sleep. I thought I would die. Get a good prescription sleep medication from your Dr. or psychiatrist and use it as needed. If you want to make sure that you don't become tolerant alternate with an adult dose of Benedryl. Sleep is essential to keep this illness at a level that allows you to have some kind of life and your body repairs itself during sleep. Get at least 8 hours each night.

These are the usual things that I take on a regular basis to be able to function highly enough to keep my job and have some peace of mind.

In addition: Drink lots of fluids. This will help the edema and help your kidneys to process medications. It also helps flush out excess salt. Do use extra salt if one of your symptoms is low blood pressure as this will help the symptoms of OI.
Take a good food grade multivitamin, take vitamin C and any other water soluble vitamins that you want. AVOID excessive exposure to sunlight. This bug has been found to have plant DNA and can get worse during the spring and summer when there is more sunlight and it is warmer. For some medications in this protocol excess exposure to sunlight is contraindicated. DO NOT TAN! This will make you very sick and can also induce positive ANA! This is very, very bad. UV exposure causes skin damage which causes an inflammatory immune response. Avoid the sun and take vitamin D instead. UV in amounts that would hurt this bug will kill you. (I live in a very sunny climate so what is moderate for you may be severe where I live.)
Exercise in moderation when you are feeling better can help and strengthen you for making it through the more severe cycles of the illness and improve your well-being. BUT strenuous aerobic activity can facilitate a flare up!!!! Don't push yourself. Brisk walking is good enough for our purposes. Take this advice from my personal, painful experience!!!!!
Note: This organism is very highly environmentally resistant and highly resistant to even hospital grade disinfectant products. You cannot kill it with salt but you may damage your kidneys and become hypertensive. (I'm sorry I hope I'm not stepping on toes but this is just the way it is. Any amount of salt that would hurt this organism would kill you and the 'bug' would live on.) But, if using some extra salt seems to help your symptoms do it with care. I would strongly recommend having your Dr. test your kidney and liver function before beginning any extreme homeopathic protocol.
You cannot kill this bug. In the Netherlands Doctors are using large doses of inter venous, very powerful antibiotics, anti-fungul and anti-parasite drugs and there has yet to be an effective treatment that eradicates this 'bug'. It always returns and most treatments are too toxic to continue for long periods or repeat often. The best they can do will give some temporary relief.
Mental Health: I know that it is hard to accept but your body will reach an equilibrium with this organism and you can learn to live with it if it doesn't kill you. But, you can't stop it. As a long time sufferer I recommend that anyone who is incapacitated by this illness find a good, caring, competent counselor who specializes in helping people who suffer with chronic or fatal illnesses. Have them communicate with your other health care providers and coordinate your care. He or She can be an advocate for you. This will improve your quality of life. Use any homeopathic remedies that help your quality of life and help you feel better. Be kind to yourself and only be with people who are kind to you. Don't waste time on any Doctors people or activities that are negative. Plan for the future. Change your job if you need to.
Final Note:I know some people are VERY angry about the way they have been treated by Doctors and they have every right to be. I am too; believe me! But don't be afraid to use a western medicine protocol tailored to your specific needs (mine is just an example). If you have been sick less than ten years you may not be to the point I am yet but when you get there remember that it's OK to get real medicine in order have some quality of life. In my experience this illness gets progressively worse not better. Strive for the best life you can with whatever means you have while you still have the time.

Grace to you all.

lotr

[tcmgpt13]

lotr, I just wonder where you are getting your information from about what is happening in the Netherlands as far as treatment protocols. Is there research being conducted there then? Just curious as you seem sure about what type of DNA is being found in an organism which is connected to Morgellons (which so far no one in the US has identified to our knowledge).

Have you ever been diagnosed with another underlying infection? My experience with Western medicine revealed two herpes infections which were reactivated in my body. The lesions have stopped since using medication for this type of infection. In the early part of my illness I did not have a doctor and was treated herbally, sometimes we treated the lesions on my arm with an herbal salve which drew out whatever was in the lesions. Sometimes I could feel it working in other parts of my body. So I believe personally that pushing out what is in the body is also important to a better recovery and it is an aspect which Western medicine for the most part cannot do, at least with those Western medicines which hide symptoms or push disease organisms more deeply into the body. Surgery would be an exception certainly, but even that has limits and often harms the body too.

My doctor has told me it is quite possible that everyone has some underlying infection and that treating this could help the other symptoms disappear. He has treated at least some people with this and seems to feel it is possible to get a great deal better. So far what he is prescribing for me, an anti-viral medication and ivermectin, is lessening symptoms greatly. Since hhv-6 (roseola) virus was involved in my infection picture and this virus is connected to chronic fatigue (and MS and some other infections), my fatigue level has improved over the sixteen months I have been on anti-viral medication. So I think looking into what exactly is involved as far as infection is extremely important to recovery and resolution of symptoms. I no longer have to fool with long term treatment of lesions as none are forming now, though occasionally some skin will peel in a small area as if it wants to try. I use Sunspot ES, a milder skin treatment for sunspots, on these areas. That makes it dry up immediately now whereas in previral medication days this meant this same salve would reveal the parasite I always found around the edge of these lesions. I would treat the area and get out what I could over time which seemed to be generating from both the lymph and the blood stream. When the infection is controlled or even is gone (as much as it can be gone) the parasites will have nothing left in the body to live on or co-exist with. This seems to be my doctor's philosophy as much as I can tease out from what he tells me when I see him. So I believe at least some recovery is possible.

Anyway, I have found some links to what is happening to dolphins who are dying and our diseases. At least the dolphins are diagnosed when they are found dying or dead in various areas of the world. Many of them have herpes type infections which were previously unknown in dolphins. They also have bacterial, parasitic, and sometimes cancer is diagnosed too, especially those caused or accompanied by certain types of viruses. I have said in the past here that I believe these and other sea creatures who get so ill are the canaries for the types of infections which are often being found in some with Morgellons type syndromes.

I sleep well most nights as I use herbs to treat organs if I do become wakeful. Just noting when I wake up in the night tells me what types of formulas to use as in TCM the organ systems of the body each are at a high point during two hour areas of the 24 hour day. As much as I can, I try not to use drugs as these over time dry out the veins and arteries of the body and sort of gum up the lymph system in general. This is what I have learned by studying TCM, mostly on my own but also by observation in a TCM clinic.

Depression can be helped with herbs too as it usually is generating from a liver imbalance. There are herbal formulas which treat depression and also anxiety in TCM. They may take longer to effect change and they may not be enough for every person, but in my own case I just cannot take many drugs (they rather overwhelm my body and make me feel bad). I find herbals and other supplements to be a lot kinder than taking medication over long periods of time. I long for the day my doctor feels that the anti-viral medication has done its job. He is right about this though, I am feeling better before I am through with needing the medication. Still even I can tell it needs a bit more time to do its job and I am thankful that the doctor has allowed me to halve the original dose he prescribed (it caused terrible heartburn at those levels and stopped when the drug was lowered by half).

About diuretics, there are many herbal diuretics which work nearly as well as medication and are a lot kinder to the kidney and its function. For one thing, they will help the kidney to recover better function. Just IMHO.

Anyway, I do see improvement, a lot of improvement, and I look forward to someday not needing to do as much as I do, though I expect herbs and other treatments, like using some treatments for the lymph system, to always be part of my protocol. I so agree with you about your suggestions about finding what works for you. We are all different and what one person can accept and follow, often will not work for someone else and vice versa.

best, tcm

[Jo]

Just found this presentation, which is old, but gives a wide picture of useful treatment options:

http://www.drloyd.com/bierman.pps

[Vann]

AMAZING NEW DEVELOPMENT RUBS CREATURES RIGHT OUT OF SKIN
Full details at this site:
www topix.com/forum/health/scabies/TC1QHS7EJN35E871P

This is a sensational treatment for Scabies, but I think it would be equally impressive for you people suffering Morgellons.

May God speed your cure
Vann

[zara cybele]

What gave me the most relief so far is application of garlic to the skin. I did this when I was in the "swarming" stage.

I've used garlic extensively over the years for skin infections and cuts and immediately thought it would work for skin infestation. Garlic is a natural anti-microbial and antibacterial among other things. My treatment may not be for everyone, so approach this with caution.

Grated raw garlic on the skin will eventually burn the skin, so the trick is to know when to get it off you. I did the treatment below for 3 consecutive days in a row. Each time I got bolder leaving the garlic on for longer periods of time. This won't kill them in the long-run but if you are tearing your skin apart or feel like you are losing your mind, it will definitely offer relief. Please make sure to read my warnings!

Recipe: Take 5 big, fat cloves of garlic and grate them fine. Add this to warm water (about half a cup to a full cup) with about a tsp. of sea salt and a few drops of eucalyptus oil (Note: I have tried it without the sea salt and it didn't seem as effective as with it. Also, I only added the eucalyptus for extra punch. I'm sure if you have tea tree oil, lavender, or other essential oil it would be fine and if you don't have any, don't sweat it. I don't think the oils are really the force behind this).

• Do this in an empty tub. CAREFULLY spread it all over the body starting at the feet. Do not rub vigorously this would be too intense. Be VERY conscious if you do this. No splashing the garlic and water around. You do not want to get this in your eyes. I'm not sure if you got it in the eyes what it could do to you.

• Work your way up the body wetting the hair down with it at the end and only then put* a light coating on the face and eyebrows (If you are comfortable with that). I found it burned the most on my face which feels very vulnerable; be ready at a moments notice to get it off any part of you that feels too intense.

• I left the mixture on the first time for only a few moments. You will feel it burning. If you can stay with the burn, you might actually find it pleasurable because in some way it feels like it is burning them off you. If it gets suddenly too hot for comfort, rinse with cool or lukewarm water. Hot water will feel bad.

My suggestion is to do a test-run with this before doing the whole body. You might even want to attempt to do your hair and face separate from the full body wash, so that you aren't overwhelmed.

You need to figure out how long to leave it on. If I were doing this again, I'd leave it for 2 minutes and rinse off. See how you feel. I did this treatment for 3 consecutive days in a row. The first time I only left it on a few moments. By the third treatment, emboldened, I left it on to dry before rinsing. This was a VERY big mistake. Do not do this. You will burn your skin. It took my skin 2 weeks to recover.

This is a pretty drastic treatment. I admit it. However, it did make me feel human again and from that point on, I could use gentler methods topically.

I have heard of people mixing garlic in olive oil and slathering it on. I have not tried this. My concern with this is if it starts to get too intense, you'll have a heck of a time getting the oil off and believe me, you'll want it off fast.

Also, I have heard of someone who did a similar thing with olive oil and garlic and then having difficulty breathing to the point of needing to go to the hospital. You do not want this to happen. She attributes this to whatever was on her moving deeper into her lungs. She smoked natural tobacco in the end for relief of breathing problems and was fine. I did not have a problem with breathing also, my pores weren't sealed with oil.

If anyone does this, let me know the results.

[zara cybele]

Originally Posted by tcmgpt13

Anyway, I have found some links to what is happening to dolphins who are dying and our diseases. At least the dolphins are diagnosed when they are found dying or dead in various areas of the world. Many of them have herpes type infections which were previously unknown in dolphins. They also have bacterial, parasitic, and sometimes cancer is diagnosed too, especially those caused or accompanied by certain types of viruses. I have said in the past here that I believe these and other sea creatures who get so ill are the canaries for the types of infections which are often being found in some with Morgellons type syndromes.

TCM, Couple of comments on your post...
Do you have those links to the dolphins getting sick. I'd like to read them.

I've noticed since the onset of symptoms (2 months back) that my herpes has been activated constantly. I attributed this mostly to the fact that I've added a lot of lemon/lime to my diet (to help my PH) which can trigger outbreaks. I do question though, if the herpes is being activated by the Morgellons.

P.S. what does the TCM acronym stand for? It makes me crazy when people abbrev. HaHa.

[tcmgpt13]

Hello zara,

Nice to meet you.

Here's the thread about dolphins:

Does this sound as if it could be Dolphin morgellons? (permalink 1)

The article in the first post does not work, but after that I did copy newspaper quotes (as they disappear so quickly). I found it very interesting to learn about the diseases they were discovering in these dead dolphins. Our canaries I think.

About the herpes, in my case, the doctor thought it was reactivated by the ciguatera poison in the fish I ate (as that is a potent nerve toxin). It caused a lot of lesions to form along my back on each side of the spine. Treatment with acyclovir has greatly lessened lesion formation. So have the latest TCM herbs I am using (prescribed by acupuncturist). My doctor would say that the herpes was activated by the poison, but who knows. In my own case I also saw a lot of moving parasites when first ill. Anything is possible as to herpes triggers I guess, including foods which have too much l-arginine. We had a discussion of this on the forum at some point.
Here it is:

Living with Morgellons-Treatment Suggestions (permalink 3)

Here's the answer to your last question, tcm is short for traditional Chinese medicine. I have written a lot about this tradition on the forum. At the time I joined I was mainly using these types of herbs with the help of a friend. After she left my area, I branched out and tried other therapies, all of which have helped over time. So when speaking of the herbs I use TCM or if it is my user name I use tcm, but it stand for the same words. Not trying to make you crazy. LOL.

[zara cybele]

Thanks TCM... Yeah, I realized after I posted what TCM meant. I'm on Chinese herbs too to just support the whole body.
I don't think my herpes is being triggered by poisoned food. It could be the lemons though. I did note the way the outbreaks were coming on the tail of each other. I'm stopping the citrus and will see where that goes.
Thanks for finding those links for me. Part of my reading material tonight!

[a1golfer]

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