Doctor prescribed several treatments -- feel unsure where to begin

[outdamnspot]

I saw my CFS doctor for a follow-up appointment today, after initially seeing her 8 weeks ago. At the first appointment, she ran a stool test, checked me for MTHFR, suggested I have a fungal issue (probably Candida) and instructed me to start detoxing with coffee enemas and Tox-ease by Beyond Balance.

I couldn't afford the Tox-Ease, so have primarily been focusing on the enemas over the past 8 weeks. I get rather significant die-off reactions and see a lot of alien material excreted on a daily basis, but have had no overall improvement in my condition, aside from feeling acutely better for the remainder of the evening after doing the enema.

My doctor is good, but a bit all-over-the-place and she throws a lot of information at you. I tested positive for a Strep overgrowth in my gut, and have non-detectable levels of Lacto and Bifido. She also thinks I have Bartonella due to red dots that have appeared all over my upper arms, and is testing me for it to make sure.

She wants me to:

1. Start taking Methyl-folate (200mcg) for my methylation defects.

2. Start taking Oil of Oregano to kill the Strep and Candida.

3. Start a specialized probiotic she sold me containing only Lacto and Bifido strains.

4. Start using a Zinc + P5P cream I have to get compounded.

5. Start taking the Bartonella formula from Beyond Balance (and I suppose I will have to get the Tox-ease as well).

She said to do each step for one week, then introduce the next.

Here are my concerns:

1. My adrenal fatigue is really bad, and it makes tolerating herxes and die-off extremely difficult. The coffee enemas have helped a little bit, but other means of addressing the issue (Hydrocortisone, Earthing, herbs etc.) just made me feel worse.

2. Isn't it bad to start Methylfolate without the other B-vitamins, esp. B12? I cannot tolerate B12 due to crashes and told her that. I said I was worried about Methyltrapping if I started the Folate on its own, but I don't think she knew what I was referring to.

So I feel nervous about embarking on methylation in a half-assed way without everything else I need, and without knowing if I'm going to be able to tolerate B12. At the same time, I am nervous about starting something as heavy-duty as Oil of Oregano, since any die-off seems to waylay me. I thought about taking the probiotic first (since I have to order all the other supplements from iherb anyway), but even the die-off from the last probiotic I tried (Miyarisan) was pretty intense.

Any advice? Am I right to feel hesitant about starting methylation with just the M-folate, or can it be done that way?

 

[helen1]

The red flags for me are that she's telling you to: 1.start with 200 mcg of methylfolate, 2.telling you to start mfolate without B12, 3.telling you to do one week of one then adding the next.

Reasons these are red flags to me:
1. Not everyone can start with 200 mcg. Some have to start with much smaller amounts. She should know this and if she doesn't it means she's either inexperienced, or she hasn't listened to patients experiences.

2. She should know that mfolate without B12 can cause nerve damage.

3. She should know that every body needs different timelines to adjust: some will react strongly and will need more than one week to adjust, or may need to experiment with dosages which will take longer.

@outdamnspot

 

[outdamnspot]

@helen1 yes, I have some reservations about her, but she's the only doctor I've found who seems to have some understanding of CFS (the rest were trying to treat things like the 'adrenal fatigue' or low thyroid, which completely backfired).

Do you think it would be a bad idea to start on a low-dose of the Methyl-B12 and stay on it while I introduce some herbs etc., so at least I have a head-start on methylation? I feel a bit conflicted about which route to go down. I know methylation is important for detox, but I suspect it is going to take me quite a while to adjust to it. At the same time, I know the infections are probably making me feel awful, so would like to try work on those. Of course, I don't want to fully tackle both processes at the same time, hence possibly taking just some B12 for now. The alternative would be to ask my regular GP for b12 shots a couple of times a week, though I don't know if those will be more tolerable than supplements.

 

[Esther12]

We all have different priorities, but I thikn it's best to be cautious with medical treatments as it's so easy to do more harm than good. If there's not good evidence that an intervention will benefit me, I don't want to put my time, effort and money into it. I'm a bit sceptical that there's good evidence those suggested interventions will do you more good than harm.

 

[taniaaust1]

The alternative would be to ask my regular GP for b12 shots a couple of times a week, though I don't know if those will be more tolerable than supplements.

I dont know what your MTHFR results were as you didnt say, Im homo for MTHFR and was on hydrox B12 injections (which seem to be the standard B12 injectable form where I am) and they didnt do much at all compared to methylB12 under the tongue.

Injections are not necessarily better and people can still react to these (actually I had such a bad what I think may of been detox reaction with my first B12 injection that I ended up looking like someone who takes acid (my whole face broke out in sores). Fortunately I knew that it could cause a reaction at first and that the reaction would probably settle down..as I knew others who had similar experience, so did continue and it was okay from there though hydroxl B12 dont do much for me).
....

If you think something may be too much for you, you are probably right and just go about all this a lot slower. Adding new things every week seems to me to be maybe a too much thing for many of us. You in all probability know better then your doctor though she's sounds one worth sticking with with knowing more then most but just follow her advice with caution.

 

[outdamnspot]

We all have different priorities, but I thikn it's best to be cautious with medical treatments as it's so easy to do more harm than good. If there's not good evidence that an intervention will benefit me, I don't want to put my time, effort and money into it. I'm a bit sceptical that there's good evidence those suggested interventions will do you more good than harm.

Which suggestions sound harmful? I wouldn't start messing with the Beyond Balance stuff now, but the Oil of Oregano (for Strep), Saccharomyces Boulardii (for Candida), and Methylation make sense, given my test results and symptoms.

 

[outdamnspot]

I dont know what your MTHFR results were as you didnt say, Im homo for MTHFR and was on hydrox B12 injections (which seem to be the standard B12 injectable form where I am) and they didnt do much at all compared to methylB12 under the tongue.

Injections are not necessarily better and people can still react to these (actually I had such a bad what I think may of been detox reaction with my first B12 injection that I ended up looking like someone who takes acid (my whole face broke out in sores). Fortunately I knew that it could cause a reaction at first and that the reaction would probably settle down..as I knew others who had similar experience, so did continue and it was okay from there though hydroxl B12 dont do much for me).
....

If you think something may be too much for you, you are probably right and just go about all this a lot slower. Adding new things every week seems to me to be maybe a too much thing for many of us. You in all probability know better then your doctor though she's sounds one worth sticking with with knowing more then most but just follow her advice with caution.

Did Methyl-B12 cause you to crash at all at the start? I tried 500mcg under the tongue before dinner and it caused a crash.

Stomach's also gurgling a lot and I'm having quite a few bowel movements .. so wondering if might be a detox reaction?

 

[barbc56]

Which suggestions sound harmful? I wouldn't start messing with the Beyond Balance stuff now, but the Oil of Oregano (for Strep), Saccharomyces Boulardii (for Candida), and Methylation make sense, given my test results and symptoms

It's a personal preference. I will not use something unless there is research or fairly strong evidence that it can work. I also want something that has quality control. Herbs, supplements are not regulated.

The thing I find troubling is that someone might use oil of oregano for something like strep throat, thinking it will help but not seeing a doctor. If untreated, strep throat can have some serious complications. If it does have medical properties, then it's a drug and should be regulated as such.

But again, it's a personal choice.

 

[outdamnspot]

@barbc56 fair enough. I am a little hesitant about the Oregano as well, and would prefer she just started me off on antibiotics, but she said I probably won't tolerate them at this stage. Her clinic is focused around the gut, so I feel like she (hopefully!) knows what she's doing, and we will probably move onto prescription treatments next time anyway.

 

[ljimbo423]

I am nervous about starting something as heavy-duty as Oil of Oregano, since any die-off seems to waylay me

@outdamnspot - I also experience big-time die-off symptoms if I'm not very careful about my dosing of supps. I started oil of oregano about 2 weeks ago, I use the liquid and put it in empty capsules. I started with 2 drops every other day and the die-off was mild. You could even start with 1 drop every 2-3 days to see how the die-off goes.

 

[Hip]

Herbs, supplements are not regulated.

FDA regulates both finished dietary supplement products and dietary ingredients.

U.S. Food and Drug Administration Dietary Supplements

In the EU, food supplements are regulated as foods and the legislation focuses on vitamins and minerals used as ingredients of food supplements.

Food Supplements | European Food Safety Authority

 

[Hip]

2. She should know that mfolate without B12 can cause nerve damage.

Would you have a ref for that? I had not heard that before.

 

[barbc56]

Yes, both supplements and drugs are regulated by the FDA, but that's where the similarities stop. If you look up the regulations on drugs, there is such a hugh difference as there might as well be no regulation. Supplements are now classified as food so different set of rules. That's IMO, is what is so problematic.

I don't want to get this thread off topic but I suggest reading the following article from the American Cancer Society.

There are two headings in the article that nicely sum up the difference. But I would suggest reading what's underneath as it goes into further detail.

Drugs are considered unsafe until proven safe

Dietary supplements are considered safe until proven unsafe.

http://m.cancer.org/treatment/treat...pplements/dietary-supplements-fda-regulations

I just used the difference in regulation as a reason for being concerned but not in detail unless the OP had asked.

 

[Hip]

Actually, drugs are also in the category of considered safe until proven unsafe. The final testing of a drug is when it is brought to market, and millions of people take it. That's when you really find out whether it is safe or not. Lots of drugs are take off the market because they end up causing too many deaths or other nasty side effects.

And this is to be expected from drugs, because usually they are entirely new molecules that were conceived in the lab, so we have no prior information about their affect on the human body across large populations.

Whereas supplements generally tend to be compounds are present in plants or food that we have been eating for millennia (or endogenous compounds found within our body), so taking a supplement is generally merely taking an increased dose of a compound we already consume in our diet. That is why there is an inherent safety with supplements.

Here is a list of 35 drugs that were taken off the market (in some cases many decades after they were introduced) due to causing too many deaths or other nasty side effects. So much for drugs being "proven safe".

Can you name even just one dietary supplement that has been found responsible for the kind of deaths or side effects that you find in that list of 35 withdrawn drugs? The only one that comes to mind in the herb kava kava, which very rarely has led to one or two deaths through toxins in the plant causing liver failure (however, this is thought to be because the wrong part of the plant was consumed; kava kava root is thought be safe).

 

[barbc56]

@Hip
Maybe you aren't familiar with the way drugs are regulated in the US? I provided information. What you say is misinformation.

Drugs do have to go through extensive testing before approved. That's why there're more expensive. Supplement manufacturers aren't required to do do as extensive requirements. While that still doesn't guarantee 100% safety, relatively speaking, the odds are better with the higher standards. Natural does not mean harmless. Read here for some dangers of supplements.

I think we have both said enough, at least on this thread.

Sorry @outdamnspot for getting off topic. I will refrain from posting more on the specific topic of drug vs medications.

 

[Valentijn]

Phase 1 (or pre-phase 1) clinical drug trials are all about safety. They test safety on healthy volunteers before anything else, and then safety continues to be tested in the later stages.

https://en.wikipedia.org/wiki/Phases_of_clinical_research

It's manufactured chemicals put on or in food, cosmetics, shampoos, etc which are considered safe until proven otherwise. This often leads to a known problematic ingredient being replaced with something nearly identical which causes the same problems, until it's been proven problematic and switched out again after a few years.

 

[Hip]

Phase 1 (or pre-phase 1) clinical drug trials are all about safety. They test safety on healthy volunteers before anything else, and then safety continues to be tested in the later stages.

Sure, but the fact of the matter is that you don't find out whether a pharmaceutical is really safe until it has been brought to market and taken by millions of people for many years. For example, for the HPV vaccine, I understand it was only discovered it can trigger narcolepsy after it was brought to market.

So the idea that drugs are proven safe before they are brought to market does not hold up. Drugs may be proven relatively safe by the clinical trials, but that's about as far as it goes.

 

[Undisclosed]

This thread has become off-topic. Please stick to the topic of the thread. Thank you.

I saw my CFS doctor for a follow-up appointment today, after initially seeing her 8 weeks ago. At the first appointment, she ran a stool test, checked me for MTHFR, suggested I have a fungal issue (probably Candida) and instructed me to start detoxing with coffee enemas and Tox-ease by Beyond Balance.

I couldn't afford the Tox-Ease, so have primarily been focusing on the enemas over the past 8 weeks. I get rather significant die-off reactions and see a lot of alien material excreted on a daily basis, but have had no overall improvement in my condition, aside from feeling acutely better for the remainder of the evening after doing the enema.

My doctor is good, but a bit all-over-the-place and she throws a lot of information at you. I tested positive for a Strep overgrowth in my gut, and have non-detectable levels of Lacto and Bifido. She also thinks I have Bartonella due to red dots that have appeared all over my upper arms, and is testing me for it to make sure.

She wants me to:

1. Start taking Methyl-folate (200mcg) for my methylation defects.

2. Start taking Oil of Oregano to kill the Strep and Candida.

3. Start a specialized probiotic she sold me containing only Lacto and Bifido strains.

4. Start using a Zinc + P5P cream I have to get compounded.

5. Start taking the Bartonella formula from Beyond Balance (and I suppose I will have to get the Tox-ease as well).

She said to do each step for one week, then introduce the next.

Here are my concerns:

1. My adrenal fatigue is really bad, and it makes tolerating herxes and die-off extremely difficult. The coffee enemas have helped a little bit, but other means of addressing the issue (Hydrocortisone, Earthing, herbs etc.) just made me feel worse.

2. Isn't it bad to start Methylfolate without the other B-vitamins, esp. B12? I cannot tolerate B12 due to crashes and told her that. I said I was worried about Methyltrapping if I started the Folate on its own, but I don't think she knew what I was referring to.

So I feel nervous about embarking on methylation in a half-assed way without everything else I need, and without knowing if I'm going to be able to tolerate B12. At the same time, I am nervous about starting something as heavy-duty as Oil of Oregano, since any die-off seems to waylay me. I thought about taking the probiotic first (since I have to order all the other supplements from iherb anyway), but even the die-off from the last probiotic I tried (Miyarisan) was pretty intense.

Any advice? Am I right to feel hesitant about starting methylation with just the M-folate, or can it be done that way?