Lyme and Histamines

My girlfriend has been fighting lyme for almost two years now. Attempting to cure it she has also developed histamines, allergies and viruses. She is allergic to her own hormones and can basically eat only cucumbers, zucchini, rutabaga and dandelion greens. She has major brain fog daily and suffers from chest pain heart attack like symptoms and pain in the lower back (maybe liver or colon) area.... does anyone have any suggestions or input what to do? We have gone through a sea of dr.'s and no one wants to take the time to help.

There is another forum at inspire.com. Under "Genetic Alliance" there is a pretty active community which discusses Mast Cell Activation Disorder.

Mast Cell Activation Disorder is something that is being studied (it's not an actual diagnosis yet). The theory is that the body either over produces Mast Cells or they don't die off when the body is done with them. They are the cells that produce histamine.

Food sensitivities is one the issues. They result from food particles leaking through the gut wall and traveling into all areas of the body. The immune system then develops antibodies and we get systemic allergic reactions. Or so the theory goes.

I mention them because they look at things differently. Many people use allergy medication. Most have a limited diet of foods they can tolerate.

One med that is talked about is Ketotifen. It is used in eye drops for allergies in the US, but is also used in Canada and Europe for things like seasonal allergies. You can get it compounded in the US if you can find a doctor who will write the script. You can also order it from Canada online (still need the script) as long is no more than a 3 months supply for your personal use.

There may be more ideas on the inspire forum. It's been a year since I have been there so my info ins't current.

One idea though is taking liquid children's Benadryl before meals. It helps stop reactions for some people. I carry it with me usually because I never know when I will have a problem. The liquid gets into the blood stream faster. If you look on tiredoflyme.com under detox methods, Benadryl is one of the things listed.

There have been several threads on here about using allergy meds, but I don't recall seeing one lately.

Since you are new to the forum and didn't say if your girlfriend has been on the forum, you should read the following information. It isn't from me. It's from one of the moderators who is not available this week. Start with this and ask more questions.

Traveler's welcome message:
If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send Traveler an email by clicking on her screen name or the small blue envelope under her screen name. She may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and she will be happy to share the names that she has.


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php

Good luck. Let everyone know if you have questions.
Kim

welcome to our community hopefulwanderer!

I'm so sorry your girlfriend is suffering so much - what a wonderful guy you are to help her with this!

Is your girlfriend seeing a Lyme Literate Dr.? (LLMD) - just checking - because if not, that's the next step to take. She needs someone who understands how to recognize and treat the infections she has.
Because Lyme rarely travels alone, there is usually co-infections that need to be treated, too.

MarieLS, thanks for adding that link. I forgot about them when I made my post. They have a pretty good, much better than the US one.

There is another website to checkout kidswithfoodallergies.org They have a lot of info.

There is also an app Allergy Eats that helps to find allergy/intolerante friendly restaurants. It is based on guest reviews.