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Sarcoidosis warrior
Hi Daniel and Bernadette
Going back to your questions, I would like to highlight the following:
– Syptoms are usualy not consistant, in general few days I feel better few days I feel so tired and exhausted, however there are continuous symptoms like Fatigue, dizzeness, Chest itching, etc..
– Iam experiensing the diarrhea only early morning as side effect to Hydroxycloroquine that iam on day and night.
– My energy levels are very low, iam not the same person as before, I got diagnosed last year following short breathing and dizziness issues , Iam still experiensing short breath and dizziness whenever I practice any activity, Iam just trying to walk at any time to improve my situation.
– As I mentioned Iam experiencing a fatigue most of the day,
– For the sleep, Iam experiencing some dreams every day , I guess its from the medicines as well, but overall let us say I sleep a lot and sleep good , and I always try not to have a heavy dinner.
– I started my medication 13 months back , I started with high doses of Prednisone and gradually tapper it for three months , then made few test and they escalate to more daily steroid dose started with 80 mg daily means 16 pills from prednisone 5mg, following 3 month my situation got worth and I started to feel more dizzy, Although the side effects of steroid was so bad, so I made few other tests and additionaly I made MRI for my brain and made a spinal tab which showed a positive Nerusarcoidosis reached to my Central Nurve System, so since then (last 6 months ) Iam on the following : Methtroxate injection 15mg weekly which is considered as chemotherapy treatment , Hydroxycloroquine two pills daily morning and night , prednisone 5 mg one pill daily, in addition Iam on hyperterntion medicine concord 2.5 mg daily and I used to have high cholostrols levels so now I take zympass daily.
– I just want to highlight that I have been always a active and sporty man, Iam 41 years old non smoker and last year I was consistently going to gym and excercising , so I cant identify what is the trigger !!
– Following the steriod at first 6 months I refused to go for medicine escalation and I said that I should clean my gut with a proper food program, so I started the Carnivore diet, I cant tell it did nothing but at the end of the day lab results are not improving , also I did kind of keto dient and anti inflamatory diet , but also didnt work in term of lab results,
– I can tell that despite all the medicines that I take, Iam still in too many symptoms fatigue and other daily challenges, I think once and twice before I leave home or plan to do anything, about level D I checked it once and it was on normal levels , Iam taking 20,000 Vitamin D weekly any how I will ask my Doctor to test it on next visit,
– Iam attaching my reports for you to understand more my situation, please ignore if you find any Lymphoma diagnoses as I was firstly diagnosed as cancer but following the biopsy they realised it is Sarcoidosis,Iam following with 5 deffirent doctors mainly for Pulmonolgist , Rheumotology, cardiology, Neurologist, Opthalmologist and following my latest test they mentioned that they will go even more aggressive with my case and prescribe more medicines. My object here is to fight not only the sarc but to fight the side effects , Iam sure that you are aware that these medicines may get me in more troubles like blood cancer, skin cancer, diabities and much much more.
This is a quick review in my case and by time I can share more details , thank you both for your time and waiting to hear from you…
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12 Replies
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Hi – thank you for sharing these additional details. There’s a lot to unpack and I have my suspicions, but before I start sharing some of my thoughts, I have more questions for you. I’ll number them so it makes it easier for you to reply to them one by one:
1. Do you have any labs you can share prior to your diagnosis? I’d like to compare your labs prior to being on any medication since meds will impact certain lab markers.
2. Were you fighting an acute illness when the labs were drawn in March 2023?
3. Have you ever had/ do you still have any root canals and/or silver amalgam fillings?
4. Please fill in these mold symptom questionnaires to assess the possibility of mold illness, and tell me your scores (Dr. Jill assessment / CellCore’s assessment).
5. When was the last time you felt your most vibrant and well? And what changed in your life after that?
Medications:
Now regarding the Drug Induced Nutritional Deficiencies being caused by your medications, there’s a website call MyTavin that lists nutrients depleted by common drugs with research to back it up to help you take a proactive approach.->Methotrexate for example depletes folate (B9). Your B12 can also be boosted based on your labs but that was almost a year ago. The drug also depletes glutathione. In fact, your GGT value being clinically low can also indicate a need for more glutathione, our most potent antioxidant in the body. If your GGT has been low for some time, I’d be suspicious of toxicity in your case. This study in particular shows the important role that antioxidants play in sarcoidosis.
Here’s a post I did on the different food forms of antioxidants you can start to incorporate more of into your diet. Quercetin, glutathione, curcumin are all available in supplement forms as well.
->Your hypertension medication is a beta blocker, which depletes CoQ10 and melatonin. CoQ10 is needed in almost every stage of the energy production cycle, so this can directly be contributing to your fatigue. It’s usually recommended that a person supplements with 100mg ubiquinol (the reduced form), twice daily to compensate for the drug induced nutrient depletion.
Melatonin, although it’s mostly known as our sleep hormone, is another powerful antioxidant in the body. If you’re struggling with sleep, melatonin supplementation might be something to consider. Always check with your doctor first for any contraindications before starting any new supplements.
Additional Tests:
Since you’re dealing with an autoimmune dynamic and being given immunosuppressants, vitamin D’s role is a bit of a balancing act. While boosting Vitamin D can help to arrest autoimmune activity, it may also upregulate innate immunity and contribute to sarcoidosis development and/or exacerbation, which we don’t want.Check your levels of vitamin D, calcitriol and calcium (check calcium in both blood and urine). If there is no history of hypercalcemia, supplementation with vitamin D3 (and K2) to at least reach minimal levels (e.g. 30 ng/ml) would potentially be quite helpful to balance immune function. There is a critical balance here of keeping enough vitamin D in the system to avoid making the body highly vulnerable to other disease processes.
Adequate levels of vitamin A and RBC zinc (also test copper at the same time) will also help to keep the immune system strong and balanced and well supporting tissue healing. Test levels and supplement as appropriate.
Diet:
In terms of dietary guidance, following an AIP (autoimmune protocol) diet would help reduce overall inflammation and calm the immune system while working to address gut dysfunction/intestinal permeability.You can take a look at this e-book by Meal Plan Club which shares a 4-week AIP friendly meal plan with recipes. AIP means gluten-free, dairy-free, grain-free, nightshade- and legume-free, soy-free, nut- and seed-free. So yes, it is quite restrictive, but it’s very effective at reducing inflammation and calming autoimmune reactivity while working to address root causes.
If you find this too restrictive initially, then a 100% gluten elimination and dairy elimination for at least 4 months while supporting the gut with healing nutrients like glutamine, aloe vera, slippery elm, marshmallow root, zinc carnosine, etc, can help calm the immune system and lessen “leaky gut” which gluten increases. Here are some gut healing therapy food and supplement suggestions.
Other helpful considerations:
• Practice mindful breathing. This helps maintain a parasympathetic nervous system that promotes healing. Feeling short of breath is a potent stressor and source of fatigue.• Hydration is particularly important for smooth lymph flow that enables immune clearance. Do you drink enough filtered water?
• Appropriate movement is also key without over exertion. Consider using a rebounder to jump in place which can be helpful for stimulating lymph circulation. Yoga, pilates, and regular stretching would also be helpful.
• Proteolytic enzymes such as serrapeptase (taken between meals on an empty stomach) may also be helpful in degrading granulomas.
• Daily probiotics are a great way to balance and calm the immune system, especially ones with Saccharomyces bBoulardii and/or L. rhamnosus or L. plantarum (e.g. Metagenics Ultra Flora Acute Care).
• And of course, anything you can do to lessen inflammation will help. This may include: • A low glycemic and anti-inflammatory diet (e.g. avoiding sugar, inflammatory oils, pesticides, GMOs, artificial colors, preservatives, sweeteners and flavors, etc.)
• Fish oil containing at least 1,000 of EPA+DHA taken BID
• Curcumin – starting with 1,000 mg BID in a highly absorbable form such as Meriva formulation, titrating up as necessaryI hope this helps give you some areas to explore in the meantime. I realize there’s a lot to take in, but with autoimmunity, it’s always multi-faceted, and involves a combination of rapid relief while investigating and working to address the root cause(s).
We’re here to help you figure it out step by step, so feel free to ask any clarifying questions.
In the meantime, I’ll wait to hear back from you regarding my questions above.
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good morning B
I will go through it and reply soon Thanks and regards -
1- Unfortunatly, I dont have any blood test prior to being diagnosed, I never thought that I should save them.
2- Iam not sure if I got your question right , but if it is related to my biopsies, I made on June 2022 from my lung , Aug 2022 from my lymph nodes to make sure it is not lymphoma, Spinal tap on Jan 2023 to confirm the nerusarcoidosis.
3- No I dont have any.
4- Category 1: Score 3, Category 2: Score 2, Category 3: Score 6 Total mold risk = 11
Cellcore Assessment forms mold = 185- Last time I felt vibrant and well and active was on May 2022, on June 2022 without any notice I had hard breathing and pulpitation issues so I went to hospital for emergency and they made a heart CT scan to find out that my lung has some issues then I made a Chest CT scan where all the diagnose options were still open then we went for biopsy, to be more specific and explain how was my life on May or even before, I go to gym 5 days a week , eat healthy food most of the time, howeve I used to take supplements like Amino Acid BCAA, Creatine and protein powder.
Medication:
Thanks for the valuable information, I would like to highlight that for the past 12 month and in addition to my daily medicines, iam on the following supplements:
– Antioxidants (reserve two times daily)
– Curcumin two times daily
– Magnesium once every other day
– Omega 3 once daily
– Vitamin D 20,000 weeklyI also checked your post of food forms of antioxidants and this for sure could help,
As for sleep I always sleep well, however some nights I face nightmares as a side effect of my medicines,Additional tests:
I will deffinetly ask my doctor for Vitamin D test , however please let me know if you advice to have additonal test beside my regulat tests,
I would also ask for Zinc and Vitamin A testDiet:
As for the AIP diet, it is really hard to follow, the program at e book, specialy me and my wife works from morning to evening, but I will try 80% to follow and 100% avoid the restricted food.I would rather go for food elimination program which sounds more convenient to my case,
I just want to highlight here that I have followed both programs earlier but yet my lymph nodes are still has inflamation and this has been proven by the Pet scans,
Maybe the attack at my body was on high levels earlier, my goal now is to have more control and reach to remission.Going back to your message is just so refreshing and inspiring, I will just consider every word and take it into my consideration, in the other hand I would always like to know about your advice , it is very important for me for a better outcome,
Kind regards -
thanks for answering my questions.
1. If you recall where you got tested in the past, they might still have your medical records if it’s not too long ago. You can request these for your own files if you have the time/energy to ask for them.
2. What I meant by acute illness is, were you sick at the time of blood testing. Your white blood cell differentials were skewed, which is normal when we’re sick and our immune system is fighting a bacteria, virus, etc. If you weren’t sick, then we have to put our thinking caps on and figure out what’s taxing your immune system!
4. I’m highly suspicious of mold illness especially that you’ve scored highly probable on Dr. Jill’s mold assessment questionnaire, which brings me to point #5.
5. You mentioned that your symptoms began one month after feeling absolutely fine. I’m questioning your environment leading up to that point. Did you move to a new house / workplace before your health declined? Did your home / workplace have a leak/water intrusion (big or small!) that you can recall a few months prior to developing symptoms? High humidity anywhere you live? Cars can be moldy too!! Are any other family members developing “weird/unexpected” symptoms progressively or all of a sudden?
I encourage you to watch this video “How Mold & Mycotoxins Harm Us” where I share how mold & mycotoxins infiltrate the body, and I do also mention granulomas being one of the “mis*diagnosis” for mold illness.
If you have the financial means for functional testing to rule out/confirm mold illness, this would be my next step recommendation. With mold, we need to test both ourselves and our environment. If budget is a concern, I can help you figure out which test to go for that will give you the biggest bang for your buck!
In the meantime, please watch this entire mold testing section in my Mold & Mycotoxin Illness course to better understand what these are and the costs associated with each.
Let me know once you’ve had a chance to go through these videos and reply to my questions above regarding your environment so I can continue guiding you.
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Hi Bernadette
1- I got one report dated March 2022, kindly find it attached2- I was not sick at the time of blood test.
5- No I didnt move to a new house or work place , yes my home had a leak/which created paint marks in one room, I paint it then again it has appeared in 6 months,
You maybe aware how is weather in Dubai specialy in summer so humidity is always a big factor, As for my family members Iam glad and thank god no one has any symptoms,
There is no doubt that detoxing mold is very helpful for anyone , Not only my case , however is a route cause! Could be !
Can we confirm that it is the route cause in my case , I feel that it could be a big factor that I didnt count, so I will invistegate my home and work place, check if there is any leak, repaint, remove all wall papers which may create mold by time and do deep cleaning.
As for the test to rule out/confirm mold illness I would love to go for it, please let me know which tests and I guess it will be covered by my health insurance,
I just watched the videos, it is very helful, organized and informative, I liked the assessment machine ideas this really helps to check my home,
as for my body test Iam not sure if my insurance would cover that but I guess if we specificly mention my blood test requirements they will accept.Waiting to hear from you
[LAB REPORT 1068054.pdf] -
thanks for sharing the additional labs & information.
1. Interestingly, your body was already showing signs of inflammation even before your symptoms began. If you notice in your 2022 and 2023 test results, both times your lymphocytes were clinically low and neutrophils were on the upper end of the clinical reference range. This usually happens when someone is sick and fighting an acute infection like a bacterial infection, but you mentioned you weren’t sick. This pattern could also happen when the body’s immune system is wrestling with a chronic simmering viral or bacterial infection. Your body was also showing signs of inflammation in 2022 with the high ESR.
Inflammation is often a collection of dysbiosis (imbalanced gut microbiome), infection, food sensitivities and toxins that bounce off our genetic expression and leads to inflammation and the secretion of all sorts of inflammatory chemicals which travel anywhere in the body (either an already inflamed part, injured part or genetic attraction there). ESR is one of these chemical markers.
So it was clear that your body was already wrestling with something (likely mold) even before your symptoms began.
5. Regarding mold. Unfortunately, wiping it/painting over it is not the solution. And DO NOT do it yourself!! This needs to be handled by a certified mold remediator who will seal off the area, and take the right measures to ensure it doesn’t grow back.
They need to figure out why mold is growing and stop the source. I’m not sure if you saw my Insta stories recently, but there was a wall buckling in one of the bedrooms, and we found high moisture in that wall (>86%). Turned out there was a very small leak from the roof that was seeping into the wall, which lead to invasive mold growth behind the built-in cabinet closet. We are currently having it remediated by a licensed mold remediator. Problem is, there’s only 1 company who is properly licensed in Dubai and he’s extremely busy. I had to wait a few months until he could come to our house. Until that time, I had moved my kids out of that room and they were sleeping in another room temporarily on mattresses. Mold is no joke – it’s not an aesthetic issue, it’s a toxicity issue.
I would recommend the same for you. Is the problem in your bedroom? If so, consider sleeping elsewhere for the time being. And wherever you spend most of your time, we need to make sure there’s no mold growth there either. It can be behind walls and without a smell, and still cause problems. You can find the details of the mold remediator in Dubai here. Let Omar know I sent you so he can try to squeeze you in (055-107-7775). Getting your own moisture meter to measure the walls can help you pinpoint problem areas as well.
If you can’t reach Omar, then try reaching out to Valentina. She’s a building biologist (she was also a guest expert in B Better) who can help do moisture readings and also has a thermal camera to see behind walls if there’s active mold growth anywhere. 055-283-2881
In terms of testing your body for mold, I recommend the OAT test and the MycoTox test. Both are expensive and not typically covered by insurance, but some good insurances may reimburse you for it.
-The OAT test will be able to pick up if there’s invasive mold growth (aspergillus) in your GI tract, but also general toxicity and nutrient deficiencies needed for detox. It won’t tell us WHAT type of toxicity it is though.
-The MycoTox test will confirm if you have mycotoxins in your system. But we have to make sure your elimination pathways are open (i.e. daily bowel movements, can sweat easily, good circulation/lymph flow, good urine flow, etc), or else you may not excrete the mycotoxins in urine and it will show a false negative. So do you feel that you have good elimination pathways?
If so, the OAT combined with the MycoTox test can give us a pretty good idea of your body burden if mold is present in your system.
In parallel, you need to find find the mold, and get rid of it. Avoidance is key! Detoxing your body is the next step.
We can help give you access to these functional tests, but like I said, you’ll need to see if your insurance will reimburse you for them.
Results take 3 weeks for the OAT ($349 USD) and about 5 weeks for the Mycotox test ($465 USD). The lab offers a savings when you get both ($699 USD) + $40 shipping.
Now one final note… mold as the root cause is tricky because most people believe that if mold was the issue, that everyone at home would be affected as well. But that’s not the case. About 25% of the population (1 in 4) have a gene that prevents them from being able to detoxify from mold. We call them “mold canaries” as they sound the alarm bell for others. This is why you’ll find some family members affected, while others are not.
Let me know if this all makes sense and if you have any questions.
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Thank for your msg , I should consult my insurance on the best way to cover these tests, if not covered I should ask you if you have an idea where to do these tests i Dubai ,
Kind regards
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your conventional doctor won’t know about these tests unfortunately unless they took additional training in functional medicine.
You might want to check with your insurance directly if they will reimburse you for it. And if they need a medical note, I can recommend a few functional doctors who can possibly do this for you in Dubai.
We can facilitate the functional testing. All we need are your details (full name, date of birth, email, shipping/billing address if different) to put in the test request. The lab will then mail it out to you once you pay them directly. Whenever you’re ready, just email support@bernadetteabraham.com with the tests you’d like to pursue.
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Hi B, happy eid, Iam just sharing with you my latest blood test, things are not stable as usual, but I used to it, ups and downs , so I will continue with my current medication for the coming 2 months, As for the other test still waiting for the insurance approval, hopefuly it will pass, Regards
[MH0001171315.pdf] -
Hi – just wanted to check-in with you. Have you heard back from your insurance yet? Have you tried reaching out to Valentina or Omar to inspect your home for mold?
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Hi Bernadette
For insurance they did not approve it , however , Iam moving next week to brand new house just incase the mold in my old house was the issue. -
hopefully you’ll feel some symptom relief with the new move, but if not, there is a chance that mold has colonized inside of you. Therefore, it’s still a good idea to test your body for mold. The organic acids test (OAT) and MycoTox tests can let us know the body burden. However, if budget does not allow for functional testing, then taking action by detoxing from mold should be a priority. I discuss my 5-step strategy in the Mold course which can you watch here.
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