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Author Topic: Need Advice
linky123
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This is Linky's husband asking for advice on her behalf. She has had Lyme for over 25 years with up and down times.

In October her immune system seemed to turn on her when she developed severe multiple chemical sensitivities (MCS). This caused issues with her breathing and she developed EMF sensitivity. (sensitivity to Wi-Fi, cell phones etc.)

She went to two different family Drs but they never found anything. She also had major dental issues, she has had allot of that fixed. Three weeks ago she had two teeth pulled and seven cavitations cleaned in one visit, all with no antibiotics or painkillers.

During this time she developed Serotonin syndrome. The ER Dr prescribed 2mg Lorazepam that she took it for 2 months until she became allergic to it, she switched over to 1.5mg klonopin but after 1 week she became allergic to it also. She went cold turkey off the Lorazepam/klonopin 9 days ago and she is having an awful time.

She has been seeing an Environmental Dr in Dallas for the MCS. She has stopped all meds because anything she takes causes skin burning and severe pain.

She is not taking any meds since her immune system has seemed to turn on her. Whenever she eats her body reacts with severe skin burning and headaches. Personally, I think her dental issues caused all this to flare up in October.

She does not want to go to the ER or to a drs office due to the emf sensitivities. She says if she goes “the emfs will burn her alive.” Since she cannot eat and she is getting pretty weak we have to do something. Her anxiety is very bad also. I guess that can be expected with all the pain.

Does anyone have any ideas on what we can do?

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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Jordana
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Can you tell me how she got serotonin syndrome? Was she taking SSRI's?
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Lymetoo
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I am SO SORRY to hear this. I know she has been struggling for so long.

The only thing I can think of is to do what you can that would help heal her gut and clear the kidneys and liver. All can be involved when you have MCS.

Make sure she is not using any chemicals on her body.

Are there ANY foods she can eat without having the burning?

I will be out most of the day, but will check back in. Tell her I'll continue to pray for her. Thank you, hubby.

[group hug]

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

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Lymetoo
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Have they tried glutathione IV's??

Gastrocom?? Google "mast cell activation disorder" .. there is the possibility that a doctor who is an expert in this could help her. There's a Dr Afrin in MN and some up east. One in Oklahoma City.

Many of these Drs will prescribe the Gastrocom.

www.tmsforacure.org

http://tmsforacure.org/physicians/mastocytosis_explained_6.php

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

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linky123
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She was taking Effexor. She also took a Zomig for a migraine and for 1-2 days she took Demerol for an abscessed tooth.

The dr said it was likely the Demerol that did it.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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sixgoofykids
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I'm sorry to hear she's doing badly.

I would do as suggested and look into supporting detox organs. Glutathione IVs as Tutu suggested. Support the liver and kidneys ... just trying to get her stabilized.

She's likely also fighting all kinds of infection having been released from the absess and the cavitations. I'm suprised they didn't give her antibiotic support for that. Maybe she'll be able to fight it on her own, but if she doesn't get it under control soon, I'd talk to the doctor about that.

Does she have the MTHFR mutation and is that being supported with the right form of B vitamins? We have to be methylating to detox.

You might also read about histamine intolerance. With all the stress on the body, histamine levels can skyrocket if you have an intolerance. I get reactive to everything if my histamine levels go up. MCS can be a sign of histamine intolerance.

Doesn't she have a Bionic 880? If so, I used to use that on both my wrists and my "third eye" for energy. I just did the same frequency Dr. W had us use and the same time.

Just my ideas ... maybe something will resonate.

--------------------
sixgoofykids.blogspot.com

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linky123
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Thanks Lymetoo, I will research that.

She just said the eating has gotten a little better.

She has had high Ketones the last few days, likely because she has not been eating. She has forced herself to eat and the Ketones are a little lower and the skin burning may have gotten a little better.

Over the last 3 days she ate a plain potato and a little bit of bread and both times her skin burned bad. With the potato it burned for 24 hours.

Yesterday she had an avocado and a biscuit and things were ok. This morning she at a banana and a biscuit and a little sprite and she is doing ok so far.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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linky123
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She is not taking anything at this time. No meds, no vitamins, no detox. Her body seems to react negatively to everything.

She is allergic to every abx she has taken so no abx.

With the emf sensitivity, she is staying away from all electrical devices so she has not used the Bionic either.

Keep the ideas coming though, something may work.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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linky123
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PS. She had the dental work done in Dallas since they could treat her with Ozone to kill the bacteria.

Unfortunately, the dentist is over 5 hours away so it is tough to get more ozone shots.

He was the closest we could find.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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sixgoofykids
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Google hydrogen peroxide in the ears. I do it when I'm catching a cold to prevent catching it. It's not ozone, but it's cheap and can be done at home.

Histamine intolerance is treated with diet, so you can still look into that.

Does she have the MTHFR mutation? Most of us do. Once she can stomach it, eating 3 cups of leafy greens per day would help. I would cook them.

Also, eating high sulfur foods maybe help detox ... something as simple as soft onions and cabbage in some chicken broth.

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sixgoofykids.blogspot.com

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sixgoofykids
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Coffee enemas or castor oil packs might help the liver detox.

Beverages with electrolytes (I use a sports powder from the health food store) might help the kidneys detox better.

--------------------
sixgoofykids.blogspot.com

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sixgoofykids
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How about some good old fashioned grounding (barefoot on the ground) and sunshine?

Can she tolerate vitamin D3 drops?

I'll check in later with more ideas. She also has my private email address.

--------------------
sixgoofykids.blogspot.com

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Jordana
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So

The problem with wifi and emf is that it causes unhealthy levels of serotonin in the brain. It's tolerable for most people but over time and in the right circumstances it can be a real problem. This seems to me to be an extension of the serotonin problem she had to begin with starting with the Effexor.

Xanax and other benzos really just bring up GABA, which is sometimes enough to counter the serotonin but it doesn't LOWER serotonin enough to allow the balance to come around on its own.

There's one drug, called Periactin, which is both an antihistamine and a serotonin antagonist. It's also a cortisol antagonist.

A low histamine AND salicylate diet and Periactin ( cyproheptadine) could give her some relief. It would really be surprising if she had an allergic reaction to that.

"Skin burning" etc can be an allergic reaction but it can also be a type of neuropathy connected to an overactive sympathetic nervous system. Both of these are connected to inappropriate histamine release. When neurotransmitters get seriously thrown off the nervous system can really go crazy.

You could also try to bring up acetylcholine also since this is a natural balancer of all neurotransmitters and can also rebalance the autonomic nervous system.

If the potato didn't work she might lay off all of the nightshades too for awhile.

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Catgirl
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Everyone here gave great advice.

Toxins, EMFs, heavy metals, remove everything that smells, diet (histamine), DETOX, and add in support for the body.

She likely has lots of toxins in her body due to the cavitation work. That was quite a lot of work all at once!

Is she taking any binders? If not, and even if she did/does, she is probably still loaded with toxins, especially after so much work done. She needs binders to get them out of her body (bentonite clay, detox2, etc). Chlorella will help too.

Binders will help her to release heavy metals too, but she needs more than just binders to get them out.

Does her doc have her on a heavy metal detox program? The more metals she gets out of her body the better the EMF situation will be for her head.

Six is right, coffee enemas (your wife needs to do these for MCS and toxin removal). Also castor oil packs will improve her immune system. Lots of greens too like Six suggested. Acupuncture will help to restore her immune system too.

Also you must remove anything that smells, laundry detergent, soaps, shampoo, etc (buy unscented). This is just one more layer to give her body a chance to heal.

I get that she said EMFS would burn her alive if she went to her doctor's office. You MUST protect her from EMFS (mandatory)! I don't want to scare you but Dr. K would tell you it's a life or death thing (it's that serious).

Move or let her live somewhere where she isn't constantly exposed to them or where she can get better protection (friend's or family's home).

http://www.betterhealthguy.com/topics/detoxification

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

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Catgirl
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http://www.qlinkproducts.com/Scripts/products.asp


http://www.betterhealthguy.com/emfs

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

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Judie
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You might want to consider working with a Naturopathic Doctor. They don't use drugs.

http://www.naturopathic.org/

The one I saw specialized in diet and helped me when I was allergic to everything. It turns out it wasn't an allergy. It was a reaction to levaquin and severe gut dysbiosis that it had caused.

Good luck!

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Lymetoo
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For sure on the scented stuff .. and nothing scented on the body .. NONE. I can only use Dove unscented for sensitive skin .. nothing else.

Shampoos can be a big problem too.

I agree that the nightshades will probably be too hard on her .. no potatoes, tomatoes, peanuts, etc. Foods with high oxalates may need to be avoided. (spinach is included here)

Tell linky I love her and miss her.

[group hug]

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

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bluelyme
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I am trying dao enzyme for food intolerance. ..royal jelly is very high in acetylcholine. .catgirl recommended chlorella , bentonite bath helped...iv glutithione. .she must detox...silver nettting for emf... alka selzer gold , actvated charcoal.. you are a good husband

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Blue

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Dekrator48
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The first thing I would suspect is severe intestinal permeability (leaky gut) and problems with the detox pathways.

Most serotonin is produced in the gut.

Please read this article. Near the bottom is this paragraph, but the whole article is important:

"When the detoxification pathways that line the gut are compromised, chemical sensitivity can arise. Furthermore, the leakage of toxins overburdens the liver so that the body is less able to handle everyday chemicals in foods, water and air."

http://www.functionalmedicineuniversity.com/public/Leaky-Gut.cfm


Another article by Leo Galland, MD:

http://mdheal.org/leakygut.htm


I am praying for you, linky!!!

--------------------
The fibromyalgia I've had for 29 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Robin123
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You said whenever she eats, her body reacts. Although I'm not a doctor, I would suspect leaky gut issues. As Dekrator said above, most serotonin is produced in the gut.

Perhaps something new to try would be researching people in the field of fixing leaky gut, like Dr Josh Axe, Donna Gates, Institute for Functional Medicine, etc, there are loads of people doing this work now. You may be able to get a referral to the closest functional medicine practitioner.

Another possibility is heavy metal toxicity, since you mentioned dental work. There was an online wholistic dental summit that you could investigate. Called Wholistic Oral Health Summit. When you look at the site, those folks are experts in dental issues.

Re EMFs, I just googled for EMF summit - turns out there has been one. Might be a good idea to look at the list of presenters and contact anyone with your Qs.

[ 03-16-2016, 03:56 AM: Message edited by: Robin123 ]

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Dekrator48
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Bumping up for linky's husband or linky.

Praying she is doing better.

--------------------
The fibromyalgia I've had for 29 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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me
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I agree with looking into glutathione infusions or glutathione IV pushes and trying a low histamine diet. I do IV glutathione pushes daily.

Check into mast cell activation disorder. If she can tolerate freshly squeezed lemons in water, that is a good detoxifier.

I hope she feels relief very soon.

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dbpei
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So sorry to hear of Linky's struggle. Glad she has you. [Wink] I have just started reading a book written by a woman (now a renowned nutritionist and chef who is very well respected) who suffered from advanced Lyme disease as well as several other autoimmune disorders due to inflammation and toxicity. She is totally cured now.

I think she suffered from MCS and sensitivity to EMF's among many other things. I recall her mentioning burning skin after eating and she lost a ton of weight from being so sick. She is totally healed today from dietary changes as well as removing some of the toxins in her environment.

I agree that a good functional doctor or naturopath might be your best bet, but until you can see one, perhaps reading this book would get you going in the right direction.

Eating Clean: The 21-Day Plan to Detox, Fight Inflammation, and Reset Your Body
by Amie Valpone

Poor Linky. I hope things start to improve for both of you. Please take good care.

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Gabe
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One consideration with regard to binders.. it's a tough situation as yes the toxins do need to get helped out of the body.. (and meds are so full of toxic binding agents that can accrue as well! [Frown] ).

However, I have been cautions about detoxing when in very delicate health.

So maybe going very slow with this, watching for a reaction and backing off at that point.

And lots of clean, filtered water, with trace minerals added, as the body can hang onto the "wrong" molecules in place of ones we are deficient in (i.e.. "using" lead in place of calcium in bones, etc).

Is your water fluoridated where you live? I've heard fluoride can be a bit of a trojan horse for other heavy metals.

Another thing I'd very much recommend is lots of probiotics, a diverse range of them. Even sauerkraut or making your own kefir if it's hard to afford the pharmaceutical grade stuff.

And lastly, homeopathics can help a lot with symptoms when the system is so sensitized.

Good luck, and bless you!

Gabe

--------------------
"Keep up, and you will be kept up." Y.B.

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dal123
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Enzymes help with acute food sensitivities, pancreatic enzymes, a powder by prescription. Sounds like a person I worked with years ago, intolerant to everything, enzymes helped the issue.
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hopingandpraying
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How is linky doing? You are in my prayers.

Here is a link to find a Functional Medicine Doctor that Robin123 recommended:

https://www.functionalmedicine.org/Patients/WhatisFM/

I don't know what state you are in, but you did mention linky had gone to an Environmental Specialist in Dallas.

I would contact the TX Lyme Support Groups to see if they can recommend a LL Naturopathic Doctor out there:

TX online state Lyme groups:
https://groups.yahoo.com/neo/groups/TexasLyme/info

http://whatislyme.com/websites-and-support-groups-by-state/

www.txlda.org

http://www.lymenet.org/SupportGroups/UnitedStates/Texas/

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Lymetoo
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I hope she can be evaluated for Mast Cell Activation Syndrome. It's strongly linked with MCS.

We love you, linky!

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

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