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Rx reaction or herxing


kmom

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DD started Rifampin 2 nights ago. She hasn't been herxing as bad as her brother. But today around noon she accidenatlly got poked herself in her eye and pain can set off her meltdowns not to mention, she was due to eat lunch within minutes and hunger too can make meltdowns worse. She has been complaining her ears hurt lately. She has tubes and on abx so not thinking it's an ear inf, rather from Lyme??? So as she started to melt she told me that her ears have been hurting so much. I got her in a detox bath to help bring down the meltdown symptoms. She kept crying, saying her ears, eyes and mouth/lip area hurt. I got worried b/c her eyes looked puffy and she was scratching. I didn't seen a particular rash but she was scratching her chest area. I spoke w/ her LLMD and he said it sounded more Rx reaction than Lyme herx. I thought the histamine thing can happen w/ Lyme though. Anyone ever experience this? B/f we had Lyme Dx, she was taken off Zith, went backwards within 4 days, put back on Zith on 4th day and 2nd day after that, she had puffy swollen eyes which reminded us of an allergic reaction but didn't think much of it since she has allergies. She's been on Zith ever since and never reacted again. Till today. I gave her Benedryl and she's fine now. But so scared to take her off the Rifampin since it's targeting Bartonella but scared to keep her on it if she's allergic to it. The LLMD said take her off to be safe. But I have those feeling in my bones that have gotten us to this point and not an institution and I can't help think it's not Rifampin. Just dawned on me. She started Diflucan too. That she takes AM and PM. So she had that this AM unlike the Rifampin. Anyone ever have a reaction to Diflucan?

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Its hard to say... I had itchiness all over for about two weeks after starting antibiotics before it stopped. I do give all our children histamine reducers daily to lower overall histamine levels and it has helped. If you start to give benadryl you need to do is consistently for two weeks before makes an overall impact. We do one dose nightly, one hour prior to bed.

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Thanks. I also found an old post of yours about Ketotifen. Does that work similarly to Benadryl? Is it better? If DD didn't get Lyme from me congenitally, we think she got it when she was close to turning 3 years old. I possibly got exposed then too. I was 8 months pregnant w/ DS. No known tick bites but we had just moved and ticks were found in the house after moving in and found one engorged one on the dog. I know DD's peanut and tree nut allergy started within the next couple months to a year. And within the next 2 years I had carpal tunnel surgery, trigger finger release surgery on 2 fingers and a sudden gall bladder attack and gall bladder removed. When PANDAS/Lyme symptoms started in May 2010 for DD, her allergies were so bad. Sometimes just very swollen nasal passages to the point she couldn't breathe through nose but it wasn't stuffed w/ mucous...just swollen. When Dr. B did her environmental allergy test, she was severely allergic to many allergens. We were also surprised by her food allergy test. She reacted of course to nuts but also squash, watermelon, mustard. So histamine has seemed to play a major role in all of this as I reflect. Does it seem possible that once Lyme is under control, she may not have a nut allergy? That would be amazing b/c her OCD that has crippled her since May 2010 is all about nut contamination. What a crazy vicious cycle if Lyme is the root of all the evil! Thanks for all of your amazing info!

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We use Ketotifen for our oldest and Benadryl for the younger two. I do not notice a difference between the two 'Ketotifen/Benadryl' but we did notice huge improvements in the oldest once we started the histamine reducer. Its a little harder to tell with the twins due to their age. Apparently, you can have elevated histamines in the stomach/brain and its use is often recommended by various LLMDs.

 

They do think many of the allergies will resolve. We will even reintroduce dairy once we are further along in treatment. We are super focused on resolving 'leaky gut syndrome' and for that we do the following.

 

- hdProbiotics

- Epicor 2 x daily (prebiotic for yeast)

- Oil of Oregeno 2 x daily

- Histamine reducer

- IgG Powder

 

Found this on-line but what came along with our Ketotifen prescription 'the theory' behind how it is helpful.

 

 

Intestinal Permeability "Leaky Gut Syndrome":

By Mark Clark, RPh

 

 

Functions of Intestinal Mucous Layer (Epithelial Layer):

 

The mucous layer becomes damaged due to the below causes and exposes mast cells. This triggers release of histamine from mast celss that line the intestinal wall. Histamine triggers a cascade of events that leads to a deep inflammation in the intestinal wall. This causes the intestinal wall to become "leaky" or permeable and large molecules that normally would require further digestion are absorbed through the intestinal wall into the blood stream. This leads to your body's immune system attacking these large molecules and causing an allergic reaction to food. Depending on your genetic make-up, this can lead to asthma, rheumatiod arthritis, eczema, psorasis, possibly other immune disorders and cortisol/adrenal issues due to massive inflammation of the intestinal wall.

 

 

Causes of Damaged Intestinal Mucous Layer (Epithelial Layer):

 

1. Gluten Intolerance

2. Chronic stress - Stimulates cortisone from the adrenals which destroys the mucous layer.

3. Steroids - e.g. prednisone and cortisone.

4. alcoholism.

5. Certain antibiotics.

6. Parasites/dysbiosis of the GI tract.

7. Chronic use of nonsteroidals.

 

 

Summary of Events Leading to "Leaky Gut Syndrome":

 

Above causes leads to damaged intestinal mucous layer leads to increase in mast cell exposure leads to histamine release leads to inflammation of intestinal cells leads to leaky gut and adrenal stimulation leads to immune system attacking large molecules.

 

 

Other General Causes of "Leaky Gut Syndrome":

 

1. Crohn's Disease and other severe inflammatory bowel disorfers.

2. Chronic Giardiasis (parasitic infection)

- Giardia is protozoa commonly found in lakes, streams and even has been detected in drinking water.

- Initially when giardia infects the intestine the most common Symtoms are diarrhea and bloating but after several days most of these symptoms decrease and then the person infected may experience chronic bloating and other G.I. symptoms for even years if untreated (this state is called chronic giardiasis)

 

 

Treatments for "Leaky Gut Syndrome"

 

Histamine Reducers:

1. Ketotifen (Zaditen) 1mg by Sandoz.

- Compounded at Clark's Pharmacy (not commercially available in US).

- Antihistamine that reduces the harmful effects of histamine that allows the mucous layer to come back and heal the intestinal wall.

- Generally taken: 1-2 tablets (ours is a liquid subspension) 3 times daily 30 minutes before meals for about six months or up to twelve months depending on severity.

2.Cromolyn Sodium (Gastro Crom) 100mg by fisons or Cromolyn Sodium powder by various compounding pharmacies.

- Reduces mast cells from releasing histamine.

- This treatment does not generally work well in adults by itself.

- Generally taken: Dissolve 1/8 tsp in water 3 times daily 30 minutes before meals.

 

Parasitic and Antifungal Treatments:

1. Tinidazole 500mg by various manufactures and various compounding pharmacies.

- Used for chronic giardiasis and amoeda.

Generally taken for Giardiasis: Adults- 4 capsules all at once with a meal one time only (some doctors repeat it in ten days). Children- dose at 50mg per kg all at once with a meal one time only

2. Appropriate antibiotics / antifungals to treat identified intestinal parasites / yeast.

 

GI Healers:

1. Glutamine by various manufactures.

- Found in high concentrations in the small intestinal tract and is the preferred fuel.

- Generally taken: 1-5 gms per meal up to 15 gms per day.

2. Probiotics (friendly GI bacteria)

- Use only human strains and / or saccrharomyces boulardii.

- Generally taken: 1-2 capsules daily with meals.

3. Abstain from gluten if gluten intolerance.

- Extremely small amounts of gluten can cause major mucousal damage if gluten intolerance.

4. Stress Management.

5. Digestive enzymes.

- Breaks down protein and less pretein molecules (i.e. polypeptides) get absorbed into the blood stream.

6. Rotating foods and avoiding foods that irritate the digestive tract.

 

http://www.autismweb.com/forum/viewtopic.php?t=7543&highlight=ketotifen

Edited by SF Mom
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