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Case Study: Jane’s Journey with Lupus, Lyme, and Mould Illness

Table of Contents

Overview

At the age of 57 Jane was experiencing symptoms that were a combination of Lupus (diagnosed at 41 years of age) and Lyme Disease (Diagnosed at 54 years of age). For the past 3 years her symptoms had been getting worse and worse over time and she was experiencing;

  • Joint pain on an ongoing basis 
  • Migraines 2-3 times per week
  • Flu-like symptoms a couple of times per week
  • Digestive issues alternating between constipation and diarrhoea
  • Brain fog
  • Fatigue
  • Poor sleep

All these symptoms were impacting her quality of life. She was working full time, she had additional responsibilities at home and often it felt like each day was just about making it through instead of thriving and being able to enjoy her life. 

Fork in The Road

Jane’s Lupus consultant had suggested that she take the chemotherapy and immunosuppressant drug, Methotrexate. 

There were definitely benefits to taking the drug which included an improvement in Jane’s joint pain. However, she experienced more fatigue for several days after her weekly dose and she was also affected by nausea and more susceptibility to coughs and colds. 

After a year on the methotrexate she experienced several chest and urine infections and she had to pause her prescription while she addressed these with antibiotics. It was this break which invited her to re-evaluate what she was doing and at this point she reached out to me to see if there was another way. 

Important to note: Jane’s decision to stop the methotrexate was communicated to and supported by her consultant. She is monitored for organ damage on an annual basis. 

Initial Health Exploration

My work with Jane started the same as it does with every client:

  • A thorough review of her testing history and intake forms
  • An appointment to discuss her health history and current symptoms in detail
  • A written report proposing our strategy for the next 6 months
  • A further consultation to discuss the strategy and refine the plan
  • All supplements that were recommended where scrutinised for interactions with her medications

Our initial health exploration suggested the following areas for most in need of support:

Digestive Health and Overall Immune System Support

Jane was bottle fed as a baby, she had a history of using steroids, antibiotics and painkillers for many years, all of which would have an impact on the development of her gut microbiome. 

The gut and the immune system are closely connected, about 70% of the immune system is located in and around the gut tissue. It can take up to the first 18 years of life to develop healthy immune barriers. Therefore, this history could have impacted the health of the gut (and joint barriers) and the microbiome and this disruption can impact immune function.

Given that Jane was also experiencing digestive symptoms, I recommended that we start with a stool test. 

Possible Mould and Mycotoxin Illness

Jane had lived in the same home for many years and had memories of visible mould on the walls, however there was no mould currently visible. Jane had many symptoms that could be related to mould illness, including the top 3:

  • Electric shock sensations
  • Ice pick-like sensations
  • Vibrating or pulsing sensations running up and down the spinal cord or specific segments of the spine

Therefore, in addition to a stool test, I recommend urine mycotoxin testing

Some of Jane’s mould symptoms overlapped with symptoms that could also be attributed to Lupus. It was possible that mold could be activating her immune system and therefore exacerbating the Lupus symptoms. Sometimes it is hard to say exactly what is happening, but, my thoughts were that if we could address a possible mold issue this could vastly contribute to Jane’s well being regardless of which was the chicken and which was the egg. 

Possible Histamine Intolerance / Mast Cell Activation Syndrome (MCAS)

Jane’s health intake form suggested many symptoms of histamine intolerance / MCAS. For a full understanding of histamine intolerance and MCAS you can read this blog. 

MCAS is a label given to individuals who experience an unregulated release of chemical mediators (cytokines, interleukins, prostaglandins and histamines) which produces a remarkable multitude of symptoms. Jane’s symptoms were:

There may be a link between MCAS and Lupus Symptoms and therefore it was something I wanted to Keep on the radar. Very often when histamine is being produced there is something that is triggering it e.g. mold spores, gut infections or something else.

Therefore, our strategy was to

  • Identify any possible triggers (mold and gut testing)
  • Support digestive health
  • Follow a low histamine diet if we felt it was required
  • Support histamine breakdown if we felt it was required

These were what I call the “Big Rocks” in Jane’s case. However, while we were waiting for test results to come in, we did some foundation building. 

Foundation Building

Often in big complex cases it is easy to get overwhelmed by the complexity of the case and forget about the basics. But, health recovery is built on lots of small actions that all add up. 

When I asked Jane what things she felt made the difference, she said:

It wasn’t one thing, it was all the little things that added up.  

Initially I identified several things that we needed to address to lay the foundations for Jane.

These were:

Nutrition Changes

I normally like to do blood glucose monitoring with my clients BUT I had asked Jane to make some changes to her diet to prepare for the Mycotoxin Test. It felt like too much to ask Jane to make these dietary changes and do blood glucose monitoring at the same time, therefore we prioritised a low mycotoxin diet instead.

Sleep

Sleep had been an ongoing challenge for Jane for many years. Sleep is when your body heals and repairs and if we couldn’t get Jane sleeping, she was going to continue to struggle. 

We had a discussion about things like morning light exposure, cold showers and supplements to support sleep. All of which she enjoyed and helped improve her sleep across the 6 months. 

Exercise

Jane loved exercise but the ups and downs in her health made it hard to stick with anything long term and build physical capacity. She was doing some online exercise sessions but she would be affected by post-exertional-malaise. 

We need a movement routine to recover from chronic pain and fatigue. Therefore, instead of asking Jane to give up her sessions completely, I gave guidance on how she could reduce PEM and stick with her current routine.

Nervous System Self Care

Jane had some positive self care tools. She was an active participant in a local choir, she enjoyed swimming, time in nature, she had a good community and support from family. I taught her some somatic nervous system tools that she could use to support herself on a daily basis. We did some small pieces of somatic experiencing in some of our sessions across the 6 months which also really helped. 

Follow Up 1

One month later we had the results of Jane’s stool test, with the following findings:

Figure 2: Jane’s Stool Test Results (GI Effects Comprehensive Stool Analysis, Genova Diagnostics)

The main findings were:

  • Dysbiosis
  • Parasite Infection (Blastocystis Hominis) 
  • Candida Albicans
  • High Fecal Fats 
  • Low Short Chain Fatty Acids (SCFAs)

At this time, Jane reported improvements since implementing the low mycotoxin diet. Therefore, we decided to maintain the dietary changes and add in supplements to support her fat digestion and the gut imbalances and infections. This included:

  • Tudca for fat digestion and absorption
  • Uva Ursi to address the Candida
  • Oregano to address the parasite and dysbiosis
  • Butyrate as a temporary SCFA supplement
  • Biotoxin Binder to support toxin elimination from possible “die off”

Follow Up 2

Jane had been following the supplement plan that was created based on her stool test results and had made a fantastic commitment to the low mycotoxin diet. 

Improvements:

  • Jane noticed she was able to sustain her energy for longer
  • Her digestion has been much better and she hadn’t experienced bloating, constipation or diarrhoea and her bowel movements were more regular.

We now had Jane’s mycotoxin test results. She showed a significant positive result for Ochratoxin A

Figure 3: Jane’s Myocotoxin Test Results (Urine Mycotoxin Test by Great Plains Laboratory)

I created a comprehensive mold detox strategy for Jane to follow, but there was a plot twist. Shortly after this appointment she caught COVID and therefore, the mold detox plan was delayed. 

Follow Up 3

Improvements:

After 3 months, Jane had seen the biggest improvements in her digestion and her migraines. Despite the recent challenge of falling ill with Covid, she maintained in joint pain, flu like symptoms and brain fog. 

Jane’s energy and mood had regressed slightly which was understandable given the layering of Covid, a stressful trip to London and upcoming work and pre-Christmas stress. 

GoalAs described on Health Intake FormStartDec 22
#1Improved Energy / Reduced Fatigue42/3
#2Reduce / Manage Lupus Symptoms:
#3Joint Pain4-65/6
#4Migraine3-47
#5Flu-Like Symptoms55
#6Diarrhoea / Constipation3-47/8
#7Mood63-4
Table 1: Jane’s Symptom Scores at Follow Up 3.

Next Steps

As we were approaching Christmas it didn’t make sense for us to pursue the mould detox plan. Therefore we focussed the majority of our session on how to manage the festive season with regards to food and the normal challenges of family dynamics. 

Sleep was still a bit hit and miss so we added in some more sleep support and I encouraged Jane to continue to work on her nervous system with the tools I had given her. 

I suggested a bit more flexibility in her diet to accommodate some Christmas socialising. Jane’s exercise capacity had regressed due to her viral illness so we decided to keep physical activity in maintenance and give her body more time to recover from the recent setback.

Follow Up 4

We had our 4th follow up in January and it was no surprise that some Christmas indulgences had knocked Jane’s progress slightly backwards:

Her digestion, migraines, joint pain, flu like symptoms and brain fog were all a bit worse than December which Jane put down to a change in diet.  

Her energy was a bit up and down but felt about the same. Her mood had actually been a bit better, likely due to less pressure from the holidays. 

Her sleep had improved over the holidays but regressed since returning to work; likely due to the stress of returning to work and pushing her body a little too hard with exercise. As a whole, she felt that the sleep support was helping. 

It can be mentally challenging to accept progress regressions. But from this we learnt some important things:

  • Nutrition makes a difference to Jane’s symptoms
  • Stress levels makes a difference to Jane’s symptoms
  • Pushing her body before it is ready exacerbates Jane’s symptoms and sleep. 

Therefore, the next step was to re-establish some foundational habits after the holidays with the view to re-engage with the mould detox at a later date. This included: 

  • Get back into a routine with food
  • Start a new exercise program and supplement with D-Ribose
  • Continue with current supplements and sleep support
  • Ongoing nervous system support

Exercise Program

I wrote Jane a resistance exercise program to follow with guidance on how to build up slowly and gently. 

Follow Up 5

The post-Christmas reset had worked really well for Jane and she had improved across the board in all areas.

GoalAs described on Health Intake FormStart4 weeksDec 22Feb 23
#1Improved Energy / Reduced Fatigue442/38
#2Reduce / Manage Lupus Symptoms:
#3Joint Pain4-655/67
#4Migraine3-4578
#5Flu-Like Symptoms55-657
#6Diarrhoea / Constipation3-447/87/8
#7Mood663-47
Table 2: Jane’s Symptom Scores at Follow Up 5

She had managed to quickly build up to the full exercise program which I set for her and was consistently working out 3 times per week. She felt that the D-Ribose supplement had also really helped. 

There wasn’t a huge amount left to work on but we made a few tweaks which included:

  • An updated exercise program to add a little more variety
  • Continue with current supplements and add in charcoal binders to support mould detox
  • Ongoing nervous system support – we did some somatic work in our session around emotional eating and I gave Jane some things she could practise on her own. 
  • Jane was keen to add Yin Yoga into her routine and I shared some of my recordings with her.

Follow Up 6

The next time we met, Jane was still doing amazing!

GoalAs described on Health Intake FormStartDec 22Feb 23March 23
#1Improved Energy / Reduced Fatigue42/388
#2Reduce / Manage Lupus Symptoms
#3Joint Pain4-65/678
#4Migraine3-4788
#5Flu-Like Symptoms5578
#6Diarrhoea / Constipation3-47/87/88
#7Mood63-477
Table 3: Jane’s overall improvement from start to finish

In addition to what you see here Jane was sleeping really well, she hadn’t been sleeping well for years and she put this change down to the supplements and getting the right balance of exercise in her day.

This was our last session and the focus was mainly on winding things down and tying up loose ends. 

We reviewed Jane’s supplements and agreed what she would continue with for the longer term. She was left with:

  • Multivitamin
  • Probiotic
  • D-Ribose
  • Sleep Support; L-theanine and Lemon Balm, Magnesium Threonate and Sleep by Feel.

I created one more exercise plan for Jane to keep things ticking over in the gym! We spent the last bit of our session doing some somatic work and again I gave Jane some tools she could practise on her own. 

What about the Mould Detox?

If you’ve been paying attention, we never really got around to doing the mold detox. We also never really did anything with the possible histamine intolerance / MCAS that I flagged in the initial health intake process. 

When working with mold there are several stages that I support a client through. These are:

Mould Avoidance

Mould avoidance includes food and environmental exposure in the home and workplace. Early on Jane and I had a conversation about this. We both agreed it would be too overwhelming to start investigating her home. So we agreed that we would proceed “as if” her home was safe but I made it clear that if she didn’t make progress we may need to circle back. 

Jane noticed a big difference from the low mycotoxin diet, in fact this is something that surprised us both. It wasn’t easy to follow this way of eating, but it was definitely worth it for Jane because it had such a big impact on her quality of life. 

Preparation & Opening Drainage Pathways

This includes sweating, pooping, peeing, moving, breathing and making sure your circadian rhythms are in check. We had done some work on Jane’s circadian rhythms and through the work we did following the stool test we had stabilised Jane’s digestion and she was pooping well! 

I had advised on the use of sauna and “poor man’s sauna”, which is using a hot bath to induce a sweat. This was something that we never did. I recommended KL Support to Jane to support her kidneys and liver and Tudca to support bile flow.*

*please note that all supplements were personalised for Jane and we checked all the ingredients for interactions with her medications.  

Binders

Binders help carry toxins, such as mycotoxins out of the body. This can help to reduce the

overall toxic body burden and support better functioning systems. We were due to start binders around the time Jane fell ill with Covid. We did use some binders for a short time but because she was doing so well, I didn’t feel the need to continue with these long term. 

Remove

The remove phase is designed to kill off mold spores which have colonised the body. We did a “remove” phase using Oregano and Uva Ursi in response to the findings of the stool test. This may have also impacted mold spore colonisation at the time. 

Maintenance

Maintenance is when we can maintain progress by doing less healing work and taking less supplements. As we came to the end of our time together I began to wean Jane off some of her supplements to see how she would respond. She was able to maintain her progress and make further progress in some areas with less support. 

What about Retesting?

I don’t enforce retesting on my clients. Some clients are just so happy to be feeling well that they don’t care to repeat test results. Some clients like to track progress or if someone has made some progress but it feels like there is still work to do, they may want to retest and see where their time and energy is best spent. 

Jane was really happy with her progress and the need for retesting was never brought up by her or myself. My overall sense was that it wouldn’t add anything further to the work we had done. 

Is there anything I didn’t do that I would have done differently?

This case had ups and downs and progress wasn’t linear. In the end Jane achieved an incredible outcome and this is a testament to her commitment to the process. 

In our final appointment she was still struggling a bit with some exercise induced asthma since having covid. 

With a limitless budget I would have done some IgE testing to see if we could get to the bottom of any potential triggers for her asthma. It would have also been interesting to see if she had an immune reaction to mould, IgE and IgG. 

Jane had a mercury filling and I would have been curious if this was another immune trigger. The Cyrex Array 11 would test this including reactions to multiple other chemicals:

Given her history of Lyme Disease and Candida Albicans in her stool test, Cyrex Array 12, The Pathogen Associated Reactivity Screen would also have been interesting.

We could have also considered food sensitivity testing such as the Cyrex 10 and Cyrex Array 4 which tests for gluten cross reactive foods:

However, there is a difference between what my brain feels curious about and what information changes the actions that we take in practice and what difference this would make to the client outcomes. 

Jane was content with everything she had achieved and I wanted her to feel free to enjoy her new life, with more energy, aliveness and joy without feeling the need to constantly be finding problems and working on herself too diligently. 

She knows she can always circle back to me if needed 🙂

Comments from Jane

In the beginning the process was a little overwhelming. There are so many things to consider and it is hard to know where to start. But Anna organises everything for you and tells you exactly what to do and when.

Anna has such incredible expertise and an understanding of people. Every time we spoke she really picked up on what I needed at that point. 

I feel 80% better than I did at the start of the process and I am happy with that! You might be able to make tweaks to feel a little bit better but I am happy with where I am. 

I feel that I have achieved a lot in the last 6 months and I am really grateful for that. 

My joint pain is just occasional now, my migraines which were 2-3 times per week are now maybe 1 episode every couple of months, my flu-like symptoms, which were a couple of times per week, are just occasional.

I still have some brain fog and find it difficult to concentrate for long periods of time but I think that is more a reflection of how busy and stressful life can be working full time, exercising, socialising and having responsibilities at home. 

I had once got to a point where I thought:

This is going to be my life now and I am going to feel like this every day and not be able to enjoy life, social occasions and time with family. 

But that is not the case at all and I’m very grateful for that!

If someone was to ask me, why should I work with Anna I would say:

If you are going to engage in this process you have to be prepared to really engage, become absorbed in the journey and trust it. Sometimes the things Anna asks you to do can be a bit weird! So you have to approach it with an open mind and you have to give it everything!

I wouldn’t have any hesitation in coming back and doing it all over again if that is what I needed. 

Package and Expenses

Jane chose my 6 month Functional Medicine Package which includes the initial intake process and then 6 monthly follow up calls. From start to finish we worked together across 7 months in total. 

Investment

Although health and quality of life is priceless, finances are always a big consideration when undertaking a journey like this. Here is a break down of the investment that Jane made in her health.

  • £3000 practitioner fees
  • Approximately £600 testing fees (Stool Test and Mycotoxin Test)
  • Monthly supplement expenses varied depending on the stage of the journey. For example, the work we did following the stool test would have required a larger supplement investment compared to other months. I estimate anywhere between £150 and £300 per month. 

Are you seeking help and support in your own health journey?

I work with people who experience chronic illness such as CFS/ME, Fibromyalgia and Autoimmunity. If you feel overwhelmed, stuck or like you’ve hit a plateau in your journey, we can work together to inject fresh energy and momentum into your healing and your life! Find out more about your options here.

Table of Contents

About Anna

Online business owner since 2014, cat mum of two, ocean, food and chocolate lover, half mermaid and CFS survivor!

I have more than 15 years experience in the health industry, a Masters Degree in Personalised Nutrition and I am a fully certified  and Trauma-Trained Functional Medicine Practitioner with the Institute of Functional Medicine. 

Despite a lifelong interest in health, in 2016 CFS and mold illness turned my life upside down. 

Always the achiever, being unwell was not an option I was prepared to settle for. I committed myself to finding out what I needed to be well. It changed me as a person, a practitioner and it changed how I run my business. 

The fruits of my learnings are a combination of science, somatics and neural-reprogramming to help others overcome chronic illness and find their spark again!

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