overdue introduction

Hello Everyone, I have posted a couple of times in a hurry, but just want to provide a little intro. You have all been so helpful already. I am really grateful for your kind responses. I was clinically diagnosed with Lyme by my functional medical doctor back in January after a series of terrible panic attacks and bouts with insomnia, tingling episodes, temperature control issues, and a bunch of other strange symptoms, including crushing fatigue and muscle weakness. Also, I began having GI issues around the same time, as well as rib pain (which I had actually had for months but had not addressed). After lots and lots of testing we also discovered reactivated EBV and extremely high C4a level. So, now we think mold may be a player as well. Lyme testing revealed positive bands 39 and 41 on labcorps test. And my naturopath did muscle testing that revealed borrelia, babesia and mycoplasma. (Blood work showed mycoplasma too).

Most recently I have been having issues that seem related to MCAS - terrible reactions to herbal remedies and some supplements as well as reactions to high histamine foods, especially my beloved bone broth. I also have been having trouble with showers - the hot water seems to make my skin feel tingly and very sensitive.

I have noticed a waxing and waning feature to my symptoms in the past, like a bad week here, but then a good week, followed by a few rough days and then a few bad days, etc. I am feeling worried because I have basically been in bed for the past week with terrible (worse) fatigue and zero energy along with worsened anxiety and sleep issues. Muscle weakness is really bad right now and I am extremely sensitive to stimulation (BUT also cannot seem to be able to rest when things are quiet).

Trying to figure out if this is something others have experienced (a flare that lasts longer than usual). I have read a lot of older posts, and this does sound familiar, but I guess I am just looking for words of wisdom from those who have been dealing with these types of symptoms. This has been really hard on my family as my husband and I have 5 young children (ages 2 to 14). I am starting to feel pretty low from not being able to participate in normal family life and from not being able to anticipate what the next day will be like. It is hard to explain to kids and my husband is just carrying the full load... I know many of you have had this experience.

Sorry for the rambling and delayed introduction. Any words of wisdom are appreciated.

Jessica

I would try to get to the bottom of the mold possibility ASAP. There are two ways to go about this.

1. Test Yourself for Mycotoxins -“ Great Plains and Real-time Labs are the trusted labs.

2. Do an ERMI or HERTSMI-2 test on your house and workplace if you work outside the home. If you do this, post your results here for help with interpretation. Mycometrics Lab.

You must understand that CIRS from mold can affect some while other people with the same exposure are seemingly unaffected. CIRS/mold illness is not an allergy. It involves a completely different immune response.

Mold is a really big cause of MCAS, though not the only one. You can have more than one factor at play. Mold and Lyme tend to go hand in hand. Other issues that also can play into mold illness are heavy metal toxicity, dental cavitations in root canals or extraction sites, and intestinal parasites.

Post Edited (WalkingbyFaith) : 9/5/2021 7:36:08 AM (GMT-6)

Geez, water damage + high c4a + CIRS sounding symptoms, def could be mold.

How high was the c4a? Are you using a binder at night?

dcd2103 said...
Geez, water damage + high c4a + CIRS sounding symptoms, def could be mold.

How high was the c4a? Are you using a binder at night?

Yes. Water damage alone = mold. If you intend to stay in this house, you need to get a CIRS knowledgeable inspector if possible. What part of the country are you in?

You need a CIRS/mold skilled doctor, too.

Mold treatment and avoidance should take priority over Lyme/co treatment.

Possessions will need to be handled wisely. I, personally, do not recommend paying remediators to clean possessions. It doesn’t often work and costs thousands.

Here are some good online resources.

Paradigm Change mold avoiders
https://paradigmchange.me/wp/stuff/

May Dooley mold inspector
https://createyourhealthyhome.com/
And
http://moldcontrolonabudget.com/my-service-areas/

Biotoxin Journey - blog by a CIRS survivor
http://biotoxinjourney.com/

Dr Shoemaker’s site
https://www.survivingmold.com/

ISEAI - find medical providers and remediation - see drop down menu
https://iseai.org/about/

Post Edited (WalkingbyFaith) : 9/5/2021 5:17:20 PM (GMT-6)

Can you move?

Greg Weatherman used to be in DC. May Dooley is also available. May is much nicer. If you have had that much water damage and love your health more than the house, I would look for a home that has not experienced water damage and have May inspect it before buying. Check out her websites for tips before house hunting.

Thank you so much for all of this, WalkingbyFaith. I think you are right. Mold is a huge player in all of this. And we would definitely want/need someone to inspect a house before we move into it. These symptoms are so difficult to manage. You are right about not making costly mistakes. Just checked out May Dooley's site. She looks great and serves my area. Thank you for this information.