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TOPIC: EPD treatments??

EPD treatments?? 12 years 11 months ago #1

  • marleen
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Hello everybody,

I am new on this forum, i am from holland and I recognize a lot of my symptoms on this forum.

The thing is that everytime in spring when the tree-pollen are in the air i have gotten weird symptoms: trembling, musclepain, nervepain, hyper-feeling and shock. These are just the worst symptoms which last for 3 months. I can not go into my home because i live in the forest. So i escape to a boot and sit there for 3 months more or less.

Anyway i don't have the classic sympotms of an allergy, like sneezing,etc but i am sure that it is something in the air, because i can feel quite ok when i am on the beach or in the mountains.

Now i am thinking of taking the EPD shots. But i red a lot of negative stories, like people saying they get worse...i am looking for some advice of experience from other people who have taken the shots...
Or if someone knows another solution? I have done NAET,speciel diets, anthihistamine...

I hope hearing from some of you....
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Re:EPD treatments?? 12 years 11 months ago #2

  • Maff
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Hi Marleen,

Welcome to the forums :)

Sorry to hear that your symptoms are so severe you have to leave your home every Spring. That must be very stressful for you...especially on top of your illness.

I understand what it is like to have no control over your life as my symptoms vary with the seasons due to the amount of sunlight I am exposed to and the amount of vitamin D my body can produce as a result. I am highly sensitive to weather and seasonal changes in sunlight hours and intensity. I also suffered from multiple chemical sensitivities (MCS) or a number of years and could not leave my home without wearing a face mask.

Tree pollen does usually cause the typical hay fever-type allergy symptoms and the fact you don't have these, along with anti-histamines being of no help, suggests to me you are not experiencing a classical IgE-mediated allergic reaction. Since you get the same symptoms during the same period each year and feel better in areas with cleaner air (mountains and coast) it does sound like something in the air is causing the problems however. Are there any sources of air pollution nearby that might be worse during Spring? I would suggest mold as a possibility too as it releases toxins that can cause a variety of symptoms. I would not expect that to be bd only in Spring however. Living on a boat certainly wouldn't be expected to help either...unless you have serious mold problems in your home.

If possible I would reco0mmend you see an environmental medicine doctor who can properly assess your circumstances and possible exposures and hopefully determine exactly what is triggering your symptoms and the mechanism(s) by which the symptoms are produced.

I have quite a lot of experience with EPD. I have had two courses of treatment in the past. The first time I noticed no change except the gradual decline in my health I was already experiencing. The second time there is no doubt in my mind that the EPD was directly responsible for making my condition a lot worse. I felt very ill, as if I had a serious viral illness, for a week after each shot. At thesae time there were was a major worsening of the gut dysbiosis that was already a problem for me. From my personal experience I would say stay clear of it...but others may well have had positive results with it so ultimately you need to consider everything and decide for yourself whether to give it a go.

I am now looking at low-dose naltrexone (LDN) therapy which is a cheap drug therapy aimed at bringing the immune response back into balance. You might want to read about that in the 'Treatment Information' section of the Main Menu to the left.

All the best,

Maff
If you are going through hell, keep going - Winston Churchill
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Re:EPD treatments?? 12 years 11 months ago #3

  • marleen
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Thank you for your reply.
I think you are right , the allergy is not a classical Ige reaction. Does this mean that EPD won’t work? However I am almost sure that it has to do with certain tree pollen. Because I escape to different areas and I feel very quikly were I can stay ore not…But it is almost ever ‘green”area were I get problems, the tree areas are the worst. In the moderate areas i feel like I have a big hangover…and I get very crancky, irritated and firsty. In the season I need to drink more than 5 liters of water. I also have problems in autumn, than I am tired and stiff and a bit swollen and I suffer from a lot of brainfog(no shocks, trembling, nerve pain). The brainfog is very frustrating…I have to do simple work because of the brainfog. I finished University 5 years ago, that time I had no brainfog problems and I was quite smart ;)


I am under treatement of a biological doctor in Holland. He is thinking of giving me the EPD( I mentioned it myself). Now he has have given me ambrotose it is from the US and it consist of Aloe vera.
My thyroid is tested and my Tsh and t3 are a little bit low. Also my adrenal function is tested, the cortisol is a bit low, not too low but the 17-keto-steroiden are low and DHEA is 0.3. The therapist also recommand me hydrocortsion 7,5 mg…but as I already feel swollen I am afraid to get more swollen. Do you have experience with hydrocortsion?


If this sensitivity is not an allergy thing, does this mean that the problem is more a hormone thing (cortisol etc) instead of an immuunsystem problem? And if this sensitivity is nog Ige will LDN be another solution?

How long were you sick of the EPD? I red somewehere that you need at last 6 injections before you feel better. Before that you can feel worse...but my question is what is worse and for how long? Were you feeling worse for one week?
Why did you try it more times?


At the moment my health is good, only the first week after my period i have a lot op brainfog. I am guessing this has to do with progesteron shortage..

Thanks for the good work, this website has a lot of good information!
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Re:EPD treatments?? 12 years 10 months ago #4

  • Maff
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I believe EPD is supposed to work whether the symptoms are caused by an IgE-mediated reaction or through another immunoglobulin, most likely IgG. So it still may be worth a try for you.

It does sound like you have identified the culprit in tree pollen so lets hope the treatment works. I wonder, do you have any problems with seasonal affective disorder (SAD), or just general seasonal fluctuations in mood or sleep patterns? I suffer quite badly from SAD and I have seen that my other symptoms caused by ME/CFS, MCS etc are worse in winter and on cloudy days.

Given your test results you might want to ask your doctor about DHEA and either T4+T3 medication or dessicated thyroid such as Armour as well as the hydrocortisone. I had huge improvements using relatively small dosages of DHEA. It restored my energy, ability to cope with stress...and I believe was the key in me overcoming multiple chemical sensitivities. Restoring optimal adrenal function may help you overcome your environmental sensitivities also.

When cortisol is low, supplenting it with hydrocortisone should actually reduce swelling and inflammation. Again, you should discuss it with your doctor if you are worried.

I had roughly 10 EPD shots of 2 years initially and didn't notice a major change for better or worse. The second time I had only 2 or 3 shots and became very ill after each one for a week at a time. I believe it also exacerbated my gut dysbiosis (anything that alters immune function theoretically has the potential for this) and this problem persists until this day.

You should know that I was already in a very bad way before this second series of EPD shots so don't let me put you off. I just wouldn't want you to take EPD lightly. If you do go ahead just make sure you monitor ytour symptoms and any changes and report everything to your doctor.

Thanks for your comments about the site they are really appreciated :)

Good luck!
If you are going through hell, keep going - Winston Churchill
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EPD treatments?? 8 years 8 months ago #5

  • jason34
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Maff, question about the molds. You say that they releases toxins that can cause a variety of symptoms. I wonder where i can read more about this?
I had some molds in my crawl space/under build. And i think many of my MCS symptoms is coming from molds.
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EPD treatments?? 8 years 8 months ago #6

  • Maff
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Hi Jason and welcome to the site!

If you had/have mold issues with your home and your illness started while living there and/or symptoms worsen when you're at home then chances are it is at least playing a significant role in your illness.

Many mold toxins that have been identified by researchers have been shown to be neurotoxins - which ties in with theories about brain toxicity and hypersensitivity in MCS.

AA good place to start finding out more is from Dr. Lisa Nagy's articles right here at EiR. The list of her articles can be found here: www.ei-resource.org/expert-columns/dr-lisa-nagys-column/

I hope this helps. All the best.
If you are going through hell, keep going - Winston Churchill
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