Am I going down a functional doctor rabbit hole?

[Hope_eternal]

So I’m beginning to wonder if my son is right and we’re going down a rabbit hole of trying this supplement and that supplement for all the deficiencies and funguses and viruses that show up on the functional doctors testing. For the last three months, we have been working with a functional doctor, whom I really like and trust but we put so much money into all the appointments and testing and supplements and aren’t seeing much outward progress, except for the initial positive improvement with his ability to speak in an audible voice, and that he now consistently can get out of bed for 20 minutes almost every day. Those are really great and we’re grateful but I’m just wondering if I’m buying into something that may in the end just disappoint him and me. I had an appointment with her today and she’s so lovely. I know she’s trying to help us she has a son as well so I know she feels empathy for us as she said it many times. She’s really thoughtful about her approach and is very gentle. His numbers are looking so much better with her treatment yet as typical with ME it’s not helping at all with the fatigue. Now she wants to treat a Candida overgrowth, which can be pretty intense. She promised to do it slowly to hopefully avoid any die off reactions but I don’t know …has anyone gone the functional route and had much success. Did they try the antivirals and antifungals and supplements for adrenal health and inflammation supplements like boseilla? I had such high hopes that she could help him. I found a doctor near us that worked with Jacob Teitelbaum. I’ve heard mixed reviews about whether his protocol works. His book boast 70%+ improvement in MOST his patients. I’m really at a loss. I’m so desperate to help my son. I’ve already spent thousands of dollars just this past year which I’m OK with if the end result is his return to health or at least to some capacity. Ug my hope flame is flickering today. I’m so worried for him. Sometimes it feels like a monumental responsibility carrying all decisions in so far as his health. It’s a lot. Thank you for letting me vent and if anyone has any experience with all the above and can shine some light on my worries, I’d be very appreciative. Have a good night.

 

[hapl808]

His book boast 70%+ improvement in MOST his patients.

Surprisingly, everyone's bestselling book reports 70% or higher in their patients.

I personally found pretty much no help in Teitelbaum's protocols, but then again I'd already spend decades researching this stuff by the time I read his book.

There's no 'answer' to your question, although almost everyone here will understand the feeling. Unfortunately, you and your son will have to personally triage and decide what to treat and what to ignore. No one has an answer, but sometimes people stumble across stuff that helps - antibiotics, antivirals, herbals, spices, peptides, etc. But nothing works for everyone, and personally I think people who are panicked and desperate to find a solution 'soon' tend to get the worst outcomes.

My biggest mistakes were usually not medical (I was always a bit cautious about promises), except for one ME/CFS 'expert' who managed to permanently damage my ligaments in his examinations. I also attempted to push through some fatigue and allergies and such when more mild-moderate, because some of my loved ones just couldn't understand my limitations, which made me feel bad about them and redouble my efforts. That directly led to likely permanent disability.

Anyways, my rambling answer just means - trust your gut, don't rush through because this is a marathon and not a sprint, there's no urgency even though it will always always feel like there is, and all that doesn't mean that you won't find things that help with the cooperation of some good physicians.

 

[wabi-sabi]

Now she wants to treat a Candida overgrowth, which can be pretty intense. She promised to do it slowly to hopefully avoid any die off reactions but I don’t know …has anyone gone the functional route and had much success.

Great Scott, do not do this!

There is no evidence from the real doctors and scientists that study ME/CFS that any of us have a candida overgrowth. There's no evidence that anyone has a candida overgrowth, really. This is a red flag diagnosis that you are not seeing a legit doctor.

OK, maybe you don't want (and shouldn't take) medical advice from a random stranger on the internet.

For my experience, I have found an immunologist/allergist that is treating my MCAS. I am on four different meds for this and one supplement, which is actually helping! I was just thinking today about making a post about how much more hopeful I am feeling after my immunology appt today. He says I am improving as fast as a person can improve after being sick for so many years.

The functional person I saw told me to stop all of my allergy meds (which the allergist is having me take). That made me really sick. He also told me to eat clay, yes actual clay, to detox mold. I didn't do this since I have gastric emptying problems which I couldn't imagine would go well with eating clay. All in all, the functional advice made me sicker (and cost a bit of money).

The immunologist is the doctor that is actually making me better. Here is what the American Academy of Allergy and Immunology have to say about candida : https://www.jacionline.org/article/S0091-6749(86)80073-2/pdf

 

[wabi-sabi]

This is where you want to go for legit info on ME/CFS:

https://batemanhornecenter.org/

 

[wabi-sabi]

Did they try the antivirals and antifungals and supplements for adrenal health and inflammation supplements like boseilla?

Whether or not we have an ongoing viral infection or an immune system damaged by a past infection was one of the hot topics at the latest NIH meeting last December. This issue is by no means settled, and the best doctors and scientists in our disease don't yet know the answer. If you can watch the NIH presentations, that would be a big help in understanding the disease. They should be online eventually.

 

[Hope_eternal]

Surprisingly, everyone's bestselling book reports 70% or higher in their patients.

I personally found pretty much no help in Teitelbaum's protocols, but then again I'd already spend decades researching this stuff by the time I read his book.

There's no 'answer' to your question, although almost everyone here will understand the feeling. Unfortunately, you and your son will have to personally triage and decide what to treat and what to ignore. No one has an answer, but sometimes people stumble across stuff that helps - antibiotics, antivirals, herbals, spices, peptides, etc. But nothing works for everyone, and personally I think people who are panicked and desperate to find a solution 'soon' tend to get the worst outcomes.

My biggest mistakes were usually not medical (I was always a bit cautious about promises), except for one ME/CFS 'expert' who managed to permanently damage my ligaments in his examinations. I also attempted to push through some fatigue and allergies and such when more mild-moderate, because some of my loved ones just couldn't understand my limitations, which made me feel bad about them and redouble my efforts. That directly led to likely permanent disability.

Anyways, my rambling answer just means - trust your gut, don't rush through because this is a marathon and not a sprint, there's no urgency even though it will always always feel like there is, and all that doesn't mean that you won't find things that help with the cooperation of some good physicians.

Thank you for sharing your experience. Wow I’m so sorry you were injured and suffered permanent damage with a treatment Ug I hate this so much. That is just awful you were subjected to such mistreatment. I’m also sorry to hear you didn’t have support from your loved ones. That’s a really tough place to be in. I am trying so hard to trust my gut. One thing I e been VERY concerned with is the changing of his biologic for his Crohns. It’s just nagging at my core so I’ve reached out to his gastro to see if there’s something else we can do. But yes, I’m not rushing. I’m very cautious and agonize over r very decisio I have to make. I hope we can find our way through this. Thank you again for your note.

 

[wabi-sabi]

And these people can help you figure out if your son has the MCAS flavor of ME/CFS:

https://tmsforacure.org/

 

[Hope_eternal]

Great Scott, do not do this!

There is no evidence from the real doctors and scientists that study ME/CFS that any of us have a candida overgrowth. There's no evidence that anyone has a candida overgrowth, really. This is a red flag diagnosis that you are not seeing a legit doctor.

OK, maybe you don't want (and shouldn't take) medical advice from a random stranger on the internet.

For my experience, I have found an immunologist/allergist that is treating my MCAS. I am on four different meds for this and one supplement, which is actually helping! I was just thinking today about making a post about how much more hopeful I am feeling after my immunology appt today. He says I am improving as fast as a person can improve after being sick for so many years.

The functional person I saw told me to stop all of my allergy meds (which the allergist is having me take). That made me really sick. He also told me to eat clay, yes actual clay, to detox mold. I didn't do this since I have gastric emptying problems which I couldn't imagine would go well with eating clay. All in all, the functional advice made me sicker (and cost a bit of money).

The immunologist is the doctor that is actually making me better. Here is what the American Academy of Allergy and Immunology have to say about candida : https://www.jacionline.org/article/S0091-6749(86)80073-2/pdf

Oh my! Well that’s not good! Thank you for sharing the article. Hmmm I think I better hold off on that treatment. I’m so happy to hear you are having improvements with your immunologist. I may have to look into finding one for my son. Are they familiar with ME in general? Thanks so much for your note!

 

[wabi-sabi]

Are they familiar with ME in general?

That I don't know, unfortunately. There is a lot of symptom overlap between ME/CFS and MCAS. It seems worth a shot (to me anyway) to find out if your son has MCAS. If he does, you have a new selection of treatments to try. If he doesn't you've ruled out another problem that could confuse the ME/CFS issue. Feels like a win either way.

 

[Wishful]

I don't know anything about functional medicine, so my question is: are the treatments they prescribe based on (claimed but maybe unproven) success on people who don't have ME? They can't be basing their treatment plans on knowledge of reliable treatments for ME, since there are none, so what are they basing their plans on? Wild guesses? I don't see any point in paying thousands of dollars for wild guesses. I can make my own wild guesses, and members here will give their wild guesses for free.

 

[Rufous McKinney]

Great Scott, do not do this!

DITTO DITTO


the functional folks are been running on this yeast rumor for decades.

 

[Rufous McKinney]

if your son has MCAS.

I think that might be an arena where functional folks can be of help. There is something complicated about all this allergic stuff and figuring it out.

 

[Rufous McKinney]

The immunologist is the doctor that is actually making me better. Here is what the American Academy of Allergy and Immunology have to say about candida : https://www.jacionline.org/article/S0091-6749(86)80073-2/pdf

thats an awfully old paper...

 

[Rufous McKinney]

There's no evidence that anyone has a candida overgrowth, really

so far, I concur with this statement. Unless you have thrush, OR a recent fake organ installed, I can find no real evidence to date, that Candida exists.

 

[wabi-sabi]

thats an awfully old paper...

I couldn't find anything more recent. I think it's because these medical societies don't really have the time to stamp out medical misinformation all the time. The cancer societies do the most of it, since cancer seems to attract more internet nonsense than other diseases.

Here is a more recent blurb from American Cancer Society on reading health info online:
https://www.cancer.org/cancer/risk-...erpret-news-about-ways-to-prevent-cancer.html

 

[wabi-sabi]

There is something complicated about all this allergic stuff and figuring it out.

That's exactly why the functional people can't help. I'm on an MCAS mailing list that- get this- recommends essential oils! There is nothing more horrible for me than scented products and the "natural" scented products are worse than the artificial ones. I'm allergic to so many plant pollens. There's nothing like inhaling concentrated essence of your allergens to make you better!

And don't get me started on the anti-inflammatory diet rant. I eat very well and it does nothing for my illness. My doc said it wouldn't, and he was right. I can eat what I want and take my meds.

It's really the "root cause" stuff that infuriates me the most. Complicated, complex diseases do not have simple root causes. No complex problem does. The functional people say other doctors don't want to look for root causes. That's just not true. Doctors treat what current research and medical knowledge allows them to treat.

Real root cause analysis happens in healthcare as it does in aviation.

 

[Violeta]

@Hope_eternal, please do a search here or on the web about candida, because not everyone believes candida doesn't exist. Also, you can ask your doctor if she has anything you can read about it.

For example:
https://forums.phoenixrising.me/thr...s-it-present-in-long-covid.90791/post-2447003

 

[Hope_eternal]

Thank you @wabi-sabi @Rufous McKinney @Wishful @Violeta . I’m going to look into it more and ask the doctor more questions. She said it is systemic and was seen in his blood and urine but not in stool I’m going to need a medical degree to get through this!! Not only that but she thinks it’s possible he may have lymes because on the western blot test he had 3 positives out of 11 but on the tests lymes specialist use there are 10 more bands they test so if he has 2 positives there he would be considered to have it. Doing that test soon. I hope it’s not positive

 

[wabi-sabi]

I’m going to look into it more and ask the doctor more questions. She said it is systemic and was seen in his blood and urine but not in stoo

More questions are always better!

For background info, here is how the CDC says invasive candidiasis is diagnosed and appropriate tests:
https://www.cdc.gov/fungal/diseases/candidiasis/invasive/definition.html

When I say I don't think candida exists, I mean what the functional people call candida. It's possible for very sick people to have systemic candida infections, such as in organ transplants with necessary immune suppression, kidney failure or people with HIV/AIDS (not so much now that we have good meds for this). I am gambling on these diagnoses being unmissable by any competent doc, so assuming your son doesn't have this. I could be wrong, of course. Neither the general awfulness nor the specific symptomology of of ME/CFS, Crohn's, etc. are functional medicine's candidiasis or the CDC's invasive candidiasis.

If your son genuinely has candida he should be treated according to guidelines put out by the Infectious Diseases Society of America. Those are available here: https://academic.oup.com/cid/article/62/4/e1/2462830

Now I'm descending into a bit or snark as well as getting over involved, but I don't have the judgement to stop, so please forgive. If your son genuinely has invasive candidiasis he should be treated by an infectious disease specialist, not a functional person. Ask your doc about the Infectious Diseases Society guidelines, how her testing and treatment compare and why she doesn't follow them. (If she does follow these guidelines I am totally wrong and you should ignore me!)

OK, I promise to stop now. I am loosing all perspective and judgement!

 

[Rufous McKinney]

The immunologist is the doctor that is actually making me better. Here is what the American Academy of Allergy and Immunology have to say about candida : https://www.jacionline.org/article/S0091-6749(86)80073-2/pdf

apologies.

I was "tired" so I didn't read that article: just noticed its typewritten, and older.

that said, old school can often be Smart School.

I see they find NO BASIS for the Candida sensitivity issue. So until that can actually be demonstrated, I rest my case.