Complicated case - being passed around b/c no one knows what to do!

Hi all!

I am so excited to be here and I hope I will be able to learn tons! I am in need of some support and guidance by those who have "been there, done that, got the t-shirt" as I have a rather storied medical history and have been passed around by various medical professionals. I have a stable treatment team now and I am seeing a functional MD who is the local guru in complicated cases, but she tends to push (expensive) supplements and it's not in the budget.


Anyhow, I was a pretty typical, healthy college student until I was 21. I started getting these weird migraine episodes that presented like strokes. Shortly after, I started presenting with overwhelming fatigue and muscle pain and was labeled with CFS and fibro. Throw in a terrible ordeal with GI symptoms and some mismanaged care and lack of testing and I was on a rapid downhill spiral by the age of 23.

We finally pinpointed gluten intolerance as a cause of many of my symptoms and a muscle biopsy revealed I have mitochondrial dysfunction and recent bloodwork revealed I am compound heterozygous for MTHFR and I also suspect sulfation issues. PHEW!


A few months ago, my health continued to spiral and I began having seizures. I'm now 26 and we were seriously starting to doubt I'd make it to 30 at the rate I was going. I decided enough was enough and overhauled the diet even more (no easy feat since I am now "allergic" to 14 foods) and began rotating my foods, juicing, taking different supplements, etc. I am making significant progress, but I'm starting to slide backward and seem to have hit a plateau. My weight is still dropping and I can't seem to eat enough to maintain, which is a problem.

The functional MD has said my liver is very toxic (likely from years of psych drugs from misdiagnosis and my attempt to be compliant), I have adrenal fatigue, and likely heavy metal toxicity. The biggest issue is leaky gut. I have symptoms after EVERY time I eat absolutely ANYthing.


I had a consult recently with Dr. Ben Lynch (MTHFR.net) and he would like to have a methylation pathway panel done to further explore what my body is doing before treating the MTHFR issue.

Currently, I am doing the following:

  • castor oil packs on abdomen 1 hour daily (this is new and I think it's causing some nausea and eczema on my right side hip area)
  • Mg Malate supplement daily
  • Zinc carnitine (Zinlori) daily
  • Mitochondrial disease cocktail (formulated for me; Carnitine, CoQ10, Creatine)
  • 1 tsp L-Glutamine daily (trying to heal leaky gut)
  • 1 TBSP flax (organic, freshly ground) daily
  • probiotic (60 billion from Metagenics)
  • Enzymedica digestive enzymes (CarbGest and Digest Gold) with each meal

Current most distressing symptoms:

  • fatigue
  • overwhelming brain fog (can't concentrate or think clearly)
  • GI distress (constipation mostly)
  • bloating after meals
  • gas after eating
  • increase in fatigue, fuzzy head, and stiffness in hands after meals
  • multiple dietary allergies/reactions that seem to be worsening instead of improving

Currently, I am eating:

  • 4 day allergy rotation diet rotating botanical families
  • grain free
  • sugar free (I have a nasty reaction to sugar; mood swings, insatiability, cravings)
  • lamb, seafood, chicken, turkey, EVOO, coconut oil, carrots, squash, broccoli, cauliflower, some fruit only in the AM on an empty stomach, meat broths

I tried bone broths and I had a reaction to the free glutamates. I need to work up to the longer simmering time, clearly.

Earlier this week I had a consultation with a Paleo dietician and she said I needed to up the fat and protein and suggested a SIBO (small intestine bacterial overgrowth) and FODMAP diet for a short time, which is helping a bit I think, but it's restricting even more for me. I can't afford to eat enough to maintain my weight with the foods I tolerate! Organic and pastured is expensive and I react negatively to the commercial stuff. This is just a mess!

The dietician recommended HCl, which I had been questioning. The functional MD and MTHFR doctor have both recommended all sorts of different things (vitamin C, molybdenum, fish oils, silymarin), but the bottom line is that I need to heal the GI tract and address the detox pathway issues. I want to do this as holistically as possible because I can't afford to keep trialing supplements that don't work or that I react to (ex: I am anemic with very, very low ferritin and the iron supplement caused a terrible adverse reaction of insane amounts of inflammation).

I'd love any feedback. I just need to get on a steady road to recovery. I can't keep cutting things out of my diet. I'm losing weight too quickly (lost my period already) and can't maintain. I'm open to answering any questions.

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for starters I'd do Epsom salt baths, Nordic Naturals cod liver oil, sunshine for vit D, nettles for vitamins and minerals. And whole food probiotics, but just 1/8 teaspoon with meals. 

The Omega 3 can help seizures.

I'm wondering about reactions from corn/soy-fed animal products. Many people only tolerate wild caught or 100% grass-fed animal proteins.

Black seed oil is a historical and revered essential oil. It is inexpensive, anti-inflammatory, anti-histamine and very healing.

More about digestion/detoxification,

I'm not keen on supplements, enzymes or cleanses. More about natural sources of glutathione, natural food enzymes, whole food probiotics. Zinc and magnesium are difficult to get in our diet. What about oysters, clams, fish roe? Organic liver?

I'd focus on healthy fats (tiny amounts of coconut oil, a LOT of 100% grass-fed butter/ghee), well-cooked vegetables/veggie broth, and pasture-raised eggs (soy and corn free!!) for a couple of weeks and see how you are feeling.

Pat


Thank you, Pat, for the response! I have been researching Epsom salts for months now, but the MTHFR dr was concerned I might have issues with them, especially given the adverse reaction I had when I jumped from Mg Oxide to Malate. He wanted me to start with the vitamin C or molybdenum. ::sigh:: lol 

I definitely have been very interested in starting whole food probiotics. I sent away for some water kefir grains and would like to start with that, but I am a bit nervous. I definitely have a yeast issue and historically fermented foods and alcohol do NOT jive with my system well at ALL. 1/8 of a tsp is a very tiny amount, so I'm ok with trying it, but I am reading so many different strategies and opinions on how to make kefir (recently read about the Pickl-It jars) that now I'm just confused.

I have been planning on adding ghee into my diet soon and I will look into getting the pastured organ meats too, but I have not been able to find pastured eggs/chickens. I am getting "partially pastured", which is the best I can do from a local farm at the moment.

Pat, do you like Nordic Naturals CLO better than the fermented CLO from Green Pastures?  I thought that the Nordic Naturals had the synthetic Vit A, but I haven't looked into this in a while and am trying to decide what to buy next time.

I saw my functional MD yesterday and she said to do the FCLO since it's just not worth upsetting the body with the synthetic vitamins. Is there a non-fermented with natural vitamins? I thought manufacturers were moving away from that because of the cost.

Nordic Naturals, Carlson and Green Pastures do not have synthetic vit A, per my understanding. 

Pat

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