Need opinions on treatment/ testing

[nryanh94]

Notbsure if this is the right thread, I saw a new doctor today, my old one didn't know much.

In the consolation and exam she noted that I have Candida overgrowth, Adrenal fatigue (I didn't know enough about HPA axis to tell her), and possibly methylation issues.

She placed me on sublingual B12 drops (methyl)
Phyto-ADR for adrenals
High dose once a week Vitamin D
A supplement and drug for the candida
Zinc
And something to help with sleep
And a Paleo Diet

She wants me to get the 23 & me test; an adrenal stress profile, as well as the following tests

EBV (4 different blood tests)
Human Herpes virus type 6
HHV 6 antibodies
Mycoplasma pneu
Chlamidya pneumoniae
CMV abs
Thyroglobulin antibody
Thyroid peroxidase
TSH
T3 reverse + T3 free
T4 free
Histamine determination
Copper, serum
Zinc, plasma or serum
Homocysteine, plasma
Ceruloplasmin
Folate (folic acid), serum

I don't know much about this illness or ways to improve if there are any for me. I guess I just wanted to know if this were a good start and if anyone else had recommendations

 

[Plum]

A question I often ask myself is - what will I do with a positive test result for... (whatever the test is)? If there is a treatment, is it 1 you want to pursue? Some things are helpful, just to rule them out e.g. the thyroid tests you've listed. A lot also depends on how you respond to what has already been suggested like Paleo, sleep meds etc. If you see yourself making improvements then other treatments may help.
I personally am very sensitive to supplements and medications and it takes me months to be able to try out just 1 thing. It's all very individual and you'll know how you're responding quite quickly....

 

[fingers2022]

@nryanh94
I'm guessing you are not in UK.
Here we get told to go and have a lie down for a few hours, then go for a 10 mile run.

 

[fingers2022]

@nryanh94
I'm guessing you are not in UK.
Here we get told to go and have a lie down for a few hours, then go for a 10 mile run.

If 10 doesn't work...it's 20.

 

[fingers2022]

If 10 doesn't work...it's 20.

If 20 doesn't work, we get to have a chat with someone really nice.
That's bound to work.
Aren't we lucky?

 

[nryanh94]

@nryanh94
I'm guessing you are not in UK.
Here we get told to go and have a lie down for a few hours, then go for a 10 mile run.

I'm in the US, and I'm sorry to hear that. My PCP was the same way, told me I needed exercise and to see a therapist as well as take a few vitamins. I guess I annoyed him so much he reccomended I go to Hunter Hopkins. Well Hunter Hopkins is closing down so they recommended I see this dr.

 

[fingers2022]

If 20 doesn't work, we get to have a chat with someone really nice.
That's bound to work.
Aren't we lucky?

And if we are really, really, really lucky....
We get a discount on mat-jumping training.
This is tricky...you have to learn to jump on a mat and say 'STOP' at the same time.
But it's well worth the money...you learn a great new skill.

 

[fingers2022]

I'm in the US, and I'm sorry to hear that. My PCP was the same way, told me I needed exercise and to see a therapist as well as take a few vitamins. I guess I annoyed him so much he reccomended I go to Hunter Hopkins. Well Hunter Hopkins is closing down so they recommended I see this dr.

I'm sorry, I'm being flippant here. It is a tough journey.
Here's my advice.
Try to be sure that your illness is not something that's easily treated...e.g. coeliac disesae -> gluten free diet.
Once you are sure that you have M.E. don't bother with docs any more.
Exercise a little if you can because that will keep you generally healthy, but the downside is that it makes your M.E. worse. Rest lots! Be kind to yourself.
Message me if I can help at all...but there is no treatment available at this time...rest is best in early stages.
My best wishes.

 

[PinkPanda]

I don't know much about the virus testing. The thyroid tests, histamine, homocysteine and mineral levels seem sensible to me. Depending on wether you have a lot of gut symptoms, testing for food intolerances/ leaky gut syndrome might be helpful.

I agree with @fingers, doing basic tests like for coelic disease is important to rule out other causes of your symptoms.

Her treatment seems a bit standard to me. I took similar supplements for some time, they weren't overly helpful though.

Concerning the diet, in my experience it is always important to eat balanced and have an appetite for the food you eat. I ate almost no carbohydrates on one diet, although I had an appetite for them, and that severely depleted my energy levels. I think sugar worsens candida, so if you're still eating sugar, I might cut back on that.
If you feel the Paleo Diet fits you and helps you I'd continue it, otherwhise I wouldn't.

Adrenal fatigue is a disputed issue. My opinion is that adrenal dysfunction and hpa-axis dysregulation describe a certain mechanism that plays some role in CFS, but cannot be equated with ME/CFS, which some doctors do.
I think it can be helpful to know that if you do too much this might upregulate the hpa axis, cause stress-transmitter increase and deplete energy and nutrients further. Some people have benefits from adrenal supplements, others don't, so you might have to see how you react to them.

The supplements that helped me most are riboflavin/vitamin B2, niacin/ vitamin B3, sublingual hydroxoB12 (, calcium-pantothenate/vitamin B5, magnesium). I tolerate hydroxoB12 better than methylB12. Vitamin B5 can be helpful for treating adrenal dysfunction.
Reactions to supplements differ a lot individually, so I would always start out low-dose and see how you react (,with the supplements she proposed, too). I also don't tolerate vitamin D that well, and if, I take it low-dose (not more than 1000IU).

 

[bspg]

FWIW, this looks similar to many of the tests and treatments offered by other ME/CFS docs. Nothing strikes me as out of the ordinary or insensible.

 

[GreenBlanket]

In my opinion I wouldn't treat Candida Overgrowth with a drug of any kind. I don't think it will work. Candida is an opportunistic infection and a very determined one. A tired and run down body is one where Candida will flourish, no matter what. What I have found is that when my overall health improves, Candida magically disappears, or recedes. When things are not going well, it begins to worsen. Generally speaking a healthy body should not provide fertile ground for Candida to be an issue. It's all about the terrain.

 

[overtheedge]

Looks similar to what my doc has had me on

My zinc always comes up low on tests unless I'm supplementing, I use zinc picolinate. Don't know if correcting these levels has made a difference in my health

Never have done a paleo diet, my doc just put me on the SCD diet last month to starve out microbes in my small intestine since I tested positive for SIBO on a hydrogen/methane breath test, been feeling vastly improved since a few days after starting the diet and am still feeling better day by day.

I should note that the first time I did the SCD back near two years ago i was also taking a lot of supplements and the diet never did anything for me in the 2-3 weeks I was on it, probably because of stuff in those supplements that was against the diet though I could be wrong. This time I discontinued all supplements/meds before starting the diet and have gone very slowly introducing stuff. Been feeling consistently good, better than at any time since my CFS started years back

My homocysteine was high before my doctor put me on methylation supplements. My doc had me run a 23andme and then had me download my genetic data from the site and put it into the Genetic Genie website to determine which SNPs I had. MTHFR came up heterozygous, not saying that is the reason for the high homocysteine, might only be a predisposing factor. Doc put me on methyl folate, methyl b12, R5P, P5P, SAMe, and TMG to aid methylation, not quite sure if it did anything for me though, my energy did go up overall from something that doctor did back then but it was a gradual increase with what cause I can't tell.

 

[Bander]

Tests like these are important to rule out other possibilities (cfs is a diagnosis of exclusion), and to see if you have any deficiencies that can be addressed like low thyroid. But otherwise it's unlikely that any of these tests will help lead you to better treatments.

In other threads you mentioned feeling tired after simple exercise like walking. I would definitely see whether you have POTS. I had no idea early on that just standing can make me feel ill. Now that I understand it, I can do a better job of minimizing the problems. There are a lot of web sites that describe how to test for this without doing the expensive tilt table test that I had, like this video from the Bateman Horne Center (a bit long, but lots of good info). There are pretty accurate home blood pressure devices available these days that also measure your pulse. I prefer a wrist unit, although it's a bit more expensive.

 

[Learner1]

@nryanh94 Sounds like great advice and a good set of tests to start with.

@Bander ME/CFS is no longer a diagnosis of exclusion. (See the summary from the Institute of Medicine in the box below.)

Many of us have autoimmune issues, infections, nutrient deficiencies, endocrine issues and toxicity. We have a better chance of getting well if we figure out what's the matter and treat it.

The criteria is based on 4 of 5 core symptoms, requiring:

1. A substantial reduction in activity. More specifically: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest.
2. Post exertional malaise
3. Unrefreshing sleep
4. Either cognitive impairment or orthostatic intolerance

Physicians should diagnose ME/CFS if diagnostic criteria are met, following an appropriate history, physical examination, and medical work-up.

– The committee clearly called for the removal of the exclusionary rule; existing criteria specify that if fibromyalgia, Lyme disease or a host of other known co-morbid conditions are diagnosed, then ME/CFS cannot be diagnosed. Comorbid diseases frequently occur and the committee stated that it is incumbent upon the physician to make the ME/CFS diagnosis as well.

– In the past, the exclusionary rule for ME/CFS diagnosis has slowed research progress. This new recommendation should improve research effectiveness and progress in the future.

 

[Hip]

I don't know much about this illness or ways to improve if there are any for me. I guess I just wanted to know if this were a good start and if anyone else had recommendations

See the roadmap of chronic fatigue syndrome / myalgic encephalomyelitis testing and treatment for ME/CFS testing and treatment.