Follow-up with Dr. Rey at INIM / Nova

I had my follow-up appointment with Dr. Rey at the Institue of Neuro-Immune Medicine at Nova Southeastern University. I think Dr. Rey is very knowledgeable and caring. They take Medicare Insurance, too! Not many ME/CFS Specialists do.

There were 5 med students with Dr. Rey (with my permission). It is good to see a new flock of doctors going into this field.
Dr. Rey believes ME/CFS is an environmental illness. We "canaries" absorb toxins throughout our lives and do not detox them. Here is the detox protocol that she gave to me (attached).

And you have to Aurora liposomal glutathione available on iHerb for $50 for 16oz. Start with 1 drop and work up to 1 tsp. This neutralizes free radicals, boosts the immune system and detoxifies the body.

You have to drink plenty of water and sweat and urinate and poop and breathe correctly as these are all detox pathways. Eat high fiber veggies to help pull out the toxins but do not eat processed foods or grains as they feed bad bacteria and mold.

You also need LDN, low dose naltrexone.

Before I saw Dr. Rey, I had put myself on a protocol that is more stringent than this. And I went from being mostly housebound / often bed bound to being able to do some things. I have gone from a 30 to a 50 on the Karnofsky Performance Scale. I believe that I am still exposed to mold and bacteria and things that I react to, so I further believe that I cannot get healthy until I get out of these conditions. I hope that when I do that I will regain my health.

I hope this is helpful. Additional resources that Dr. Rey gave to me are to watch Dr. Jeanette Hope's videos on mold and to read the book by Dr. William Rhea Optimum Environments for Optimum Health. I also recommend reading: Toxic by Dr. Neil Nathan, and Never Bet Against Occam by Dr. Lawrence Afrin, and the free books by Erik Johnson. I suggest everything on the website ParadigmChange, and following Doris Loh on Facebook and everything she has written on Mitochondria. I suggest reading everything on the BulletProof blog. Also, check out the Quantum Living in the Yucatan Facebook Group and the Facebook Group Hormones Matter.

Comments

Hi,

I was curious how you were able to get an appointment with Dr. Rey at NOVA. When I call them I am told they are not accepting new patients. Thanks.
Kelly
 
Hi,

I was curious how you were able to get an appointment with Dr. Rey at NOVA. When I call them I am told they are not accepting new patients. Thanks.
Kelly
Kelly,

If you have a disability lawyer and you need documentation fast, they may be able to help you get an appointment. But if you get in by hiring a disability lawyer, monitor all your medical records and your lawyer's records of what they forward to and receive from the company very carefully, and be prompt about correcting any errors you see. Doing so will sap a lot of your energy leaving less for working on finding an effective, lasting treatment. If you need disability lawyer services for free, contact your state's department of insurance. They help with communications with the company and keeping your disability evaluations honest, but they don't recommend or work with doctors. They also don't take out the 30-40% of your check that a disability lawyer would, and be wary if a lawyer agrees to take out less.

There are many and cheaper and possibly faster and more lasting ways to detox on the net, some better than others. I like earthclinic's Ted from Bangkok https://www.earthclinic.com/cures/lupus2.html#lupuscausedbymedication. That post was from more than a decade ago, and he was already very familiar with detox plus HPA-axis support that CFS researchers are only starting to get in to. Getting thyroid hormones and adrenal hormones working may be even more important to speed detox or to do simultaneously.

There are quite a few people making miraculous recoveries from CFS using liothyronine, avoiding levothyroxine, and if helpful also supporting cortisol. https://www.healthrising.org/blog/2...gue-fibromyalgia-recovery-stories/#_Toc792656 You're more likely to have a PCP help with this than an University doctor, endocrinologist, or environmental doctor. Several of these are outlined in Stop the Thyroid Madness and similar protocols. This also can work for those with normal thyroid hormone lab values. It has to do with using the thyroid hormones that are in the blood, not just how much is in the blood, and the environmental problems and thyroid hormone problems interact. If your thyroid hormone metabolism was suboptimal for years while still healthy, you didn't detox things as quickly and so built up toxins that in turn slowed metabolism. If you clear out some toxins with supplements and feel better but don't optimize a metabolism problem that's supposed to clear them out without so much effort, wouldn't you just build up toxins again? Thyroid hormones help run about everything including detox processes I believe, and they need optimal adrenal hormones to work well. One of the glutathione precursor amino acids protects against deiodinases producing the CFS version of non-thyroidal illness syndrome.

There are several good publications in recent years, even one from the other doctors in the NOVA clinic, about the HPA axis and the hypothalamus being at the root of chronic fatigue. The healthrising link above and earthclinic link try ways to reset this, and the Ted way by doing both hormone optimization and detox at the same time.
https://pubmed.ncbi.nlm.nih.gov/30076265/
https://pubmed.ncbi.nlm.nih.gov/30929860/
https://pubmed.ncbi.nlm.nih.gov/29154201/

Hope you find something you're able to do that starts making a significant improvement.
 
Hi,

I was curious how you were able to get an appointment with Dr. Rey at NOVA. When I call them I am told they are not accepting new patients. Thanks.
Kelly
I am terribly sorry for the tardy reply but I didn’t see your comment until now. I watched the INIM website and when it stated they were accepting new patients I called and got an appointment.
You can probably get in to see Dr. Black in NC fairly quickly.
 
Kelly,

If you have a disability lawyer and you need documentation fast, they may be able to help you get an appointment. But if you get in by hiring a disability lawyer, monitor all your medical records and your lawyer's records of what they forward to and receive from the company very carefully, and be prompt about correcting any errors you see. Doing so will sap a lot of your energy leaving less for working on finding an effective, lasting treatment. If you need disability lawyer services for free, contact your state's department of insurance. They help with communications with the company and keeping your disability evaluations honest, but they don't recommend or work with doctors. They also don't take out the 30-40% of your check that a disability lawyer would, and be wary if a lawyer agrees to take out less.

There are many and cheaper and possibly faster and more lasting ways to detox on the net, some better than others. I like earthclinic's Ted from Bangkok https://www.earthclinic.com/cures/lupus2.html#lupuscausedbymedication. That post was from more than a decade ago, and he was already very familiar with detox plus HPA-axis support that CFS researchers are only starting to get in to. Getting thyroid hormones and adrenal hormones working may be even more important to speed detox or to do simultaneously.

There are quite a few people making miraculous recoveries from CFS using liothyronine, avoiding levothyroxine, and if helpful also supporting cortisol. https://www.healthrising.org/blog/2...gue-fibromyalgia-recovery-stories/#_Toc792656 You're more likely to have a PCP help with this than an University doctor, endocrinologist, or environmental doctor. Several of these are outlined in Stop the Thyroid Madness and similar protocols. This also can work for those with normal thyroid hormone lab values. It has to do with using the thyroid hormones that are in the blood, not just how much is in the blood, and the environmental problems and thyroid hormone problems interact. If your thyroid hormone metabolism was suboptimal for years while still healthy, you didn't detox things as quickly and so built up toxins that in turn slowed metabolism. If you clear out some toxins with supplements and feel better but don't optimize a metabolism problem that's supposed to clear them out without so much effort, wouldn't you just build up toxins again? Thyroid hormones help run about everything including detox processes I believe, and they need optimal adrenal hormones to work well. One of the glutathione precursor amino acids protects against deiodinases producing the CFS version of non-thyroidal illness syndrome.

There are several good publications in recent years, even one from the other doctors in the NOVA clinic, about the HPA axis and the hypothalamus being at the root of chronic fatigue. The healthrising link above and earthclinic link try ways to reset this, and the Ted way by doing both hormone optimization and detox at the same time.
https://pubmed.ncbi.nlm.nih.gov/30076265/
https://pubmed.ncbi.nlm.nih.gov/30929860/
https://pubmed.ncbi.nlm.nih.gov/29154201/

Hope you find something you're able to do that starts making a significant improvement.
Great info here!!! I have been taking liothyrinine for a few years. Recently I got back labs that showed T4 and TSH were low. I never had that before. What is the reason for not taking levothyroxine? My new endocrinologist who knows zero about mecfs disagreed with me being on T3 but is continuing my medication anyway. He said my labs for T4 and TSH were normal for the medications I am on. This didn’t make sense to me. I was getting the message relayed from the nurse so it was not as if I could ask questions.
How does one supports the adrenals? W
What do you mean by hormone optimization?
 
@I AM ,
It's good to have low T4 and low TSH when you're taking liothyronine, else you'd be on way too low of a T3 dose. As it is, if on T3 only, you may feel hypothyroid until free t3 gets about to the top of the range. Liothyronine supresses the TSH which in turn makes you produce less T4. The T3 your body produces on its own doesn't suppress the hypothalamus-pituitary feedback mechanism as much since it's in a more continuous trickle rather than a big rise when take a pill, even if you split the T3 dose into 3-6 times daily. The idea is to get rid of rT3 or keep it borderline low by keeping T4 low until solve what was making the deiodinase favor converting T4 to rT3 rather than T3 in the first place. Simultaneously supply more T3 from meds to get out of the hypothyroid state, and support cortisol and/or iron if need to in order to help that. Some supplement with hydrocortisone and iron as needed, but there are also ways to increase these without adding them directly. If have a low-grade infection as part of CFS, adding iron may worsen it.

This is a 2018 article about the low-T3 syndrome in CFS and thyroid hormones. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869352/
Fixing those issues is what I mean by hormone optimization. For example, some may not be able to increase T3 enough until optimize cortisol. T3 itself may help increase cortisol a little. Dr. Wilson's controversial protocol seems to aim at this. His way is too risky for my liking, but I haven't investigated it too much. I think there's a good idea behind it since it resets the hormones and after done some people can wean off of taking thyroid altogether unless hypothyroid before CFS, but I'm looking for a safer way to do the same thing.

I posted the healthrising link above about T3 without T4 helping fibromyalgia and CFS. The chapter in STTM on adrenals is also helpful, and they in many cases directly add cortisol which can suppress the adrenals and make you cortisol-dependent for a while even if do it by OTC adrenal cortex. That I also find risky and really have to know what you're doing and have prescriptions and tests available beforehand rather than in crisis trying to find a doctor to order. Then they slowly taper off after fixing all issues that alter deiodinase function. For lesser adrenal problems (level found by doing a salivary cortisol four times in a day and interpreting by STTM standards), there's a list of herbs like ashwaganda, maca, rhodiola, ginseng. These are also used in Aryuvedic Medicine for adrenal problems.

Some of the things in Dr. Klenner's protocol for MS boost cortisol without using drugs. I am not sure exactly what to use if need strong support but choose not to use hydrocortisone or prednisone or the like. I think his high dose Thiamine and high dose Vitamin C are part of the things that raise cortisol. There may be others. There has to be a way to do it without taking adrenal cortex or prescription steroids since Klenner didn't use these. It's probably a combo of the less powerful ones.

A note on the deiodinase function, n-acetyl-cysteine prevents the NTIS changes (in mice or rats) in high enough doses, and likely in humans as well. It further helps a lot of the gut problems in CFS and is much cheaper than liposomal glutathione. It readily converts to glutathione in the gut or at the gut border. There is a rare genetic problem of converting NAC to glutathione at a lesser rate, but it's rare so no need to do a genetic test. It's obvious if you go from not supplementing NAC nor glutatione, and you quickly notice benefits from NAC alone, that you're converting it just fine. Supplying all the precursors - glutamine and glycine are the others - also helps. Note that Klenner used a heaping Tbsp of glycine in milk four times daily. Milk has cysteine, at least the raw kind available in his day, before all our modern processing techniques removed almost all of it or changed the form.

NAC also does the other things you noted above that glutathione does, mostly because it converts to glutathione and increases intracellular glutathione levels. It's a bit tricky knowing which brands of liposomal glutathione makes the most true liposomes that get into the cells. NAC helps reduce the LPS in the gut that charcoal also does.

As far as detox, NAC detoxes heavy metals via the urine at the rate of DMSA or DPMS if you also take potassium citrate. No need to take the two at the same time. Nice to have a lot go out through urine instead of hoping you're taking enough binders in the gut. Charcoal may interfere with the absorption of medicine, so watch that a bit with the T3. Chlorella seems better in this respect. Good to use a binder even if aiming to excrete most through urine. I think the heavy metals, mycotoxins, thyroid hormones, mold illness, etc all piggy back on each other. I wouldn't be surprised if NAC plus potassium citrate also speed up excretion of mycotoxins.

There's no contraindication I've heard of for taking NAC or high dose B1 hydrochloride while on a liposomal glutathione protocol. Selenium and B2 help recycle glutathione between oxidized and reduced. The liposomal is only one of these forms.

There are also papers about using vitamin B1 when thyroid hormone alone doesn't take care of hypothyroid symptoms. The T3 protocols I've seen that anecdotally work use a rather high dose of T3 that may be hard to get prescribed.

I am not too experienced in forum posting and still do not know how to find if you posted a question for me. I just happened to forget to close this web browser tab last night and found your question this morning.
 

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