If you had a 100.000 dollar gift card for testing & treatments what would you do?

[ChookityPop]

Interested in hearing your thoughts!

 

[Learner1]

1. Test for any likely infections and test and treat those found. Support immune system as needed.
2. Rule out mycotoxins and heavy metal/chemical toxicity
3. Do Viome test and follow suggestions for 2 years
4. Do Genova Diagnostics Metabolomix+ and address imbalances)deficiencies found
5. Ensure hormones are optimized
6. Test for peroxynitrites and reduce them and repair damage with phospholipids if found
7. Rule out spinal issues
8. Look for Comorbidities like MCAS, POTS, EDS, if warranted

 

[GlassCannonLife]

1. Test for any likely infections and test an to found. Support immune system as needed.
2. Rule out mycotoxins and heavy metal/chemical toxicity
3. Do Viome test and follow suggestions for 2 years
4. Do Genova Diagnostics Metabolomix+ and address imbalances)deficiencies found
5. Ensure hormones are optimized
6. Test for peroxynitrites and reduce them and repair damage with phospholipids if found
7. Rule out spinal issues
8. Look for Comorbidities like MCAS, POTS, EDS, if warranted

What do you mean by "support immune system as needed"?

Do you have any earmarked tests for mycotoxins or heavy metals? I thought the majority of these are controversial, eg many different opinions on urinary mycotoxins.

 

[livinglighter]

Whatever Dr Klimas and Dr Kaufman do with ME patients.

 

[Learner1]

What do you mean by "support immune system as needed"?

I mean that we should get thorough testing of our immune systems and what we take for them will depend on what's found. Some of us have various types of immunodeficiencies, some have various types of autoimmunity, some have both, and some have different assortments of cytokines running amok, as well as inflammation markers, etc.

Treatments can include natural substances like andrographis, colostrum, or monolaurin, drugs like low dose naltrexone, immunoglobulins, monoclonal antibodies, anti-infectives, or in a few cases, immunosuppressants, or plasmapharesis.

Do you have any earmarked tests for mycotoxins or heavy metals? I thought the majority of these are controversial, eg many different opinions on urinary mycotoxins.

Great Plains has a respected mycotoxin test, Real Time Labs has another.

Doctors Data has respected toxic metal tests for hair, blood and urine. Ive chelated mercury, arsenic, lead and platinum using the provoked urine one as a guide over the past 10 years.

You can sit around and listen to controversy or you can dig in and look for the substance to any health claim. I've found using the above tests to guide my treatment plan to be extremely useful and a pretty good value.

Whatever Dr Klimas and Dr Kaufman do with ME patients.

They do many of the things on the list I shared, although it's worthwhile to also have a good functional medicine doctor to fill in the gaps.

 

[livinglighter]

You can sit around and listen to controversy or you can dig in and look for the substance to any health claim. I've found using the above tests to guide my treatment plan to be extremely useful and a pretty good value.

You are right @Learner1

The issue for me personally is meeting the cost independently. Having now exhausted the NHS, I’m considering how I can look further into my immune system, and afford to address any abnormalities.

 

[keenly]

Honestly our environments create our health. I am at the point I do not even bother with any testing or seeing any doctors, and I have seen most of the top ones(in cfs, supposedly).

In the UK they are planning to poison all our water with flouride.

First thing is to have a whole house filter, very few on the market actually work.

Next is solar tubes throughout house instead of having bulbs everywhere. Light controls our biology.

Ethernet everywhere, no wifi. nnEMF destroys our mitochondria.

I will buy 2 firehawks
FROM emr Tek https://emr-tek.com/collections/red-light-therapy/products/firehawk

Plus RNAS from DR yASKO

 

[keenly]

1. Test for any likely infections and test and treat those found. Support immune system as needed.
2. Rule out mycotoxins and heavy metal/chemical toxicity
3. Do Viome test and follow suggestions for 2 years
4. Do Genova Diagnostics Metabolomix+ and address imbalances)deficiencies found
5. Ensure hormones are optimized
6. Test for peroxynitrites and reduce them and repair damage with phospholipids if found
7. Rule out spinal issues
8. Look for Comorbidities like MCAS, POTS, EDS, if warranted

Our hormones are built via sunlight.

 

[godlovesatrier]

Visit the best medical system in the world, get a translator and have them give you a thorough viral, bacterial and infectious workup. That's what I day dream about sometimes anyway!

 

[godlovesatrier]

You are right @Learner1

The issue for me personally is meeting the cost independently. Having now exhausted the NHS, I’m considering how I can look further into my immune system, and afford to address any abnormalities.

Yep it costs a fortune when you factor in some of the costlier treatments.

 

[BrightCandle]

H.E.L.P Apherisis to start. That is enough to do as many rounds as needed. Would order from where ever would do it and spend the money travelling and staying there to get the treatment.

 

[ChookityPop]

H.E.L.P Apherisis to start. That is enough to do as many rounds as needed. Would order from where ever would do it and spend the money travelling and staying there to get the treatment.

Im very interested in HELP Apheresis as well! Did you catch Long Covid - ME from Covid?

 

[BrightCandle]

Im very interested in HELP Apheresis as well! Did you catch Long Covid - ME from Covid?

I had ME/CFS before I caught Covid but my first PEM episode was some 6 months before I caught Covid19. Then Covid made me much worse, I was completely asymtomatic and only know I caught it due to my cohabitant barely breathing for 6 weeks. I crashed right after that.

I am responding to the basic anticoagulant regime I started with bromelain and *kinase supplements as well a the high dose BCAA so I strongly suspect it will work for me.

 

[ChookityPop]

I am responding to the basic anticoagulant regime I started with bromelain and *kinase supplements as well a the high dose BCAA so I strongly suspect it will work for me.

Wow, that sounds very promising! How do you respond to the basic anticoagulant regime? and what does high dose BCAA do?

 

[Rufous McKinney]

Test for

I'd want to hire a Patient Advocate and assign this to them.

Figure it all out for me, tell me what I need to do, when and then what's next.

Save me from having to save my own life.

 

[Rufous McKinney]

I had ME/CFS before I caught Covid but my first PEM episode was some 6 months before I caught Covid19. Then Covid made me much worse, I was completely asymtomatic and only know I caught it due to my cohabitant barely breathing for 6 weeks. I crashed right after that.

I just want to send Empathy Hugs.

that just- sucks. to go thru all that and its so intense and hard and confusing and ...

Darn brat of an illness.

 

[ChookityPop]

You can sit around and listen to controversy or you can dig in and look for the substance to any health claim. I've found using the above tests to guide my treatment plan to be extremely useful and a pretty good value.

I love this! This is so true, its incredible what you can learn if you start diggin into stuff instead of sitting around and assume things are the way they are portrayed etc.

 

[godlovesatrier]

Agree with you Rufous, being able to actually have a medical professional do a workup would be fantastic. Flying to NY or LA to see an ME specialist doctor, or Thailand for a full workup, anywhere with Doctors who are up to date or countries that have excellent medical symptoms.

We had a user on here who sadly passed away last year from complications attributed I think to his auto immune encephalitis. But he went to China and spend a lot of money getting his diagnosis, sadly it was too late and he passed away, very sad.

 

[Learner1]

We had a user on here who sadly passed away last year from complications attributed I think to his auto immune encephalitis. But he went to China and spend a lot of money getting his diagnosis, sadly it was too late and he passed away, very sad.

Sk2018 was a British citizen working in Hong Kong when he contracted HSV1 encephalitis. He flew home to the UK where doctors were unwilling)unable to diagnose him or treat him, so he returned to China, where he found a helpful immunologist at a hospital in Shanghai who properly diagnosed him and treated him with a number of things including Rituximab and Bortezimub to remove the antibodies that were producing his symptoms.

I'm not exactly sure where he went after that, but he ended up in a German hospital where they failed to understand his previous medical history or follow up appropriately. It seems that his autoimmune antibodies returned and that plasmapharesis, Bortezimub or Rituximab may have removed the antibodies again, yet the hospital just left him to rot and he died, tragically, at 38.

Running around the globe and getting care piecemeal in different languages is not optimal.

It would be preferable to be in ones own environment and find a sympathetic, yet curious doctor willing to order testing based on hunches and information gleaned from medical research to properly identify the likely multiple conditions affecting people like us and order appropriate treatment. It is much easier to be near family and friends, in our own home environment to go through complex diagnosis and treatment over a lengthy period of time.

That said, I realize how difficult this is. I have flown 2-3 hours twice to see specialists and have also done telemedicine appointments across a large geography. However, even with this help, finding local do tors willing to support one's treatment plan and understand one's situation is not easy. It is best achieved by becoming an educated patient able to read and use medical journal articles to educate the local doctor to gain their cooperation. But, it can be done.

 

[godlovesatrier]

Yes, well I live in the North of England, a good 200 miles from Dr Weir. I require a family member to drive me down there and to stay there overnight. I found about 8 when I looked - in the south of england - one lives 50 minutes from me by car but I sort of believe Dr Weir is likely to be the better doctor.

Even so there's no suggestion Dr Weir will be able to get me the right tests or drugs.

When I contacted Dr Bansal who once worked at Breakspear in the south of England, he wouldn't prescribe Valtrex and told me to take acloyvir - totally useless. So my point is the level and quality of independent doctors in the UK is also a major barrier, not just distance and money. When I say we are in the dark ages here I don't exaggerate. Times used to be different but they are definitely not these days. The UK medical system is in systemic disrepair and lacks innovation in the core areas of medicine, we must be 2 decades behind Germany and America.