Hypermobility Q&A
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With pancreatic function and organ sagging, can you reduce or stop that from happening? Or do you just manage it? How do you cause constipation and bowel issuesl?
You need physical movement for your bowels to work correctly. For example, for those of you who have dogs, let them outside; they will run in circles and then go to the bathroom. They are animals created to move, and if they remain in the house all day long, their bowels can become backed up and mess up their bowel function. This is a similar phenomenon; if you have hypermobility, you just need to be more physically active and move more. Some of my patients have even gone to manual therapists who do manual manipulation on their stomach, and that has helped them with their bowel movements. Some people will get a rebounder, which is a little mini-trampoline, and they will bounce on it for five or ten minutes a day. If you have hypermobility and gut issues, one of the things that you need to do is to move more frequently. It's important to get at least 10,000 steps every day for your bowel to function properly. If you're not achieving this goal, you should figure out how to manually manipulate your GI tract, visit a visceral or manual visceral therapist who specializes in this, or use a mini-trampoline for around 10 minutes per day; this could have a big impact on your bowel function.
What are your thoughts on Mercury fillings?
Mercury in our bodies is a bad idea, but if you have mercury fillings, you should not remove them unless you have a biological dentist do it. I have seen multiple patients with chronic fatigue, fibromyalgia, and other health issues after getting their fillings removed and they were ground down, resulting in significant mercury exposure. Therefore, I only recommend people removing their fillings if they have a biological dentist to perform the procedure.
Do you think having sick sinus syndromes makes your heart beat slower?
Yes, it could be caused by Sick Sinus Syndrome, which is actually an electrical issue. It's an issue with the electrical system in your heart. Furthermore, it's not related to the insulation that has connected tissue parts related to the actual conduction. So, I have not read anything about that particular condition being related to hypermobility per se.
My daughter had a concussion in second grade; is there a connection with hypermobility?
Hypermobility makes you more prone to concussion. Hypermobility does not cause one to hit their head, but it does make them more prone to post-concussive syndrome. Additionally, if a concussion occurs, it can cause it to last for a longer duration. Some people get a concussion and are better within a day. Others cannot read for a week, and some experience low-grade anxiety for the next couple of years. And so, in response to that, you're more sensitive to concussion if you're hypermobile. That means things like omega 3s can help; when concussed, you're supposed to avoid screens and TV - that's when meditation can be very powerful for these patients, as it helps the brain heal while they're resting. So the hypermobility makes you more prone to post-concussion syndrome, but there are also a whole bunch of things you can do to help with it.
I do not have hypermobility, but I have anxiety, fatigue, gut issues, ADHD, and thyroid issues. Is this course relevant for me?
Yes, because we are still going to address some of the key topics such as anxiety. If you have anxiety, do you currently practice meditation? Do you have a breathing practice? Do you set aside time to let your mind relax? Is that something you do? We will also talk about diet and other things and some certain supplements in the next two sessions. One of the things about Hypermobility is that the main thing still remains the main thing. It's just more than the main thing. It's like diet is still super important, but it is way more important for those who are hypermobile. Having a self-regulatory practice where you can get away and reset your brain every day is important. We should all do that. If you're hypermobile, then it is especially important for you to do it. So one of the ways you can think about it is that it increases the requirement for you to do this stuff; not only do you have to do it, but you really have to do it.
Besides vitamins C and collagen, what are the top nutrient recommendations?
The big ones are vitamin C, D, trace minerals, B vitamins, certain kinds of protein, collagen-based proteins, and trace minerals.
Why is it harder to detox for those people who have hypermobility? How is it related to the immune system?
In detoxification, there are different phases. In phase two of detoxification, it requires a lot of amino acids and a lot of protein. People who are hypermobile need more protein for their connective tissues to maintain their connective tissues. So, what happens is you kind of pull away from detoxification, so you don't detox quite as well. So all of a sudden, now focusing on detoxification becomes a big issue: clean water, clean food, clean air, a clean environment all these things and clean relationships, avoiding toxic people. All these different forms of toxicity become really important as far as the immune system is concerned. The low-grade cortisol elevation and the low-grade stress response, when asked this question, can actually suppress your immune system over time. This is how it relates to that.
My shoulders have slipped in and out all my life; does this make me hypermobile?
That's one of the issues I have with the Beighton score; you can be someone who has a score of one, but if they easily dislocate their shoulder or patients who roll over in bed and dislocate their hips, for example like they're hypermobile. I don't care if their knees aren't hypermobile--unless they had a joint issue--where just that one joint is affected. If you dislocate major joints with minimal effort, this is a red flag for hypermobility. That's the caveat to the current scoring system; it doesn't take into account things like that.
Would it be possible to have the name of the Biological Dentist in the Richmond area?
There are two biological dentists in town, and Dr. Herod is the one I refer to. I personally know patients who have tested their mercury levels before and after having their fillings removed to see if they spike, and I have not had patients mercury levels change, such as going up, after having him remove them. And I checked his levels, and they were actually normal so I know he is not getting exposed. I know people who are getting their fillings removed from him aren't getting big hits, so he's a good option in the Richmond Area - they are kind of hard to find.
What if your bowels move too much? Is there anything you can do to slow it down?
If your bowels move too much and you're hypermobile, it's probably related more to things like SIBO and dysbiosis, which is a different kind of issue. That's where you have an overgrowth of bacteria, creating toxins and inflammation, and one of the results of your body's response is to get it out. And so you basically have bowel issues. That's a weird thing where your gut isn't as mobile. You get bacteria overgrowth, you get gut issues, you get these toxins. Your gut's response is to try to kick things out. So that would technically be when you have no other issues. IBS-D, which is a diarrhea-predominant condition, i an autoimmune spectrum condition. So, in my life, I have many other health conditions. You mentioned something about shoulder slipping; yeah. So I guess the question is that you're not sure where to start. You have a lot of really similar, related issues and you also have your shoulder slipping. Specifically, if your shoulder is currently dislocating, then you probably need to get in touch with a physical therapist that is more aware of hypermobility. There is an orthopedic physical therapy practice in Richmond. This person, I think, lives in Richmond and you can actually go there. But you want to make sure you have a physical therapist that is actually aware of one thing they do. Certain therapists will actually work on strengthening the muscles. Because if you can strengthen the muscles, you can actually tighten joints down a little bit. Something that is actually done by certain physical therapists specializing in hypermobility is strengthening certain muscles, as one of the effects of hypermobility is weakened muscles, rather than stronger ones. Therefore, it is necessary to concentrate on strengthening some muscles to provide better stability around the joints, which can help pain, inflammation and other underlying issues caused by this condition.
If mold is such a trigger for this, how can we avoid it when it is everywhere?
There are different kinds of mold: good mold and bad mold, but that is a good point.
I have a mild allergy that I just discovered this year. However, we've already got a dehumidifier in the crawl space, sealed crawl space, air purifiers, take Flonase, apparently still reacting, but can't escape the trigger. Is it possible to do things to make me feel better?
One of the things you need to realize is that, Probably you have a toxicity issue. Hay fever was not a thing, did not become endemic until after the industrial revolution. Before the industrial revolution, To have like hay fever, you had to be a person that was in the wool business who bred lots of sheep or you were a miner or something like that. It didn't become commonplace in big cities until the industrial revolution. So personally, my allergies started after I moved into a new house that had carpet everywhere and had an unencapsulated crawlspace, and I just got exposed to so many chemicals. That's what actually triggered my allergies. And so working on detoxification becomes a big issue, and your gut becomes a primary place with allergies. If 90% of your immune system is in your GI tract, guess what? If you have allergies or any autoimmune issue again, allergies are a part of atopy, which is an autoimmune condition then you have to work on your gut and detox. You can't actually help that. But detoxification probably needs to be your focus. And work on your gut is one of primary ways to do that
Is TMJ (Temporomandibular Joint) related to hypermobility?
The temporomandibular joint (TMJ) is strongly associated with hypermobility. Individuals with TMJ problems may experience their jaw getting stuck or locked, which can be very uncomfortable and may require surgical intervention. In cases where individuals with TMJ also exhibit hypermobility, it is important to investigate the potential for sleep apnea as it can be a contributing factor to the TMJ issue. In fact, studies have shown that over 50% of individuals with TMJ and hypermobility also have sleep apnea. (According to a study published in the Journal of Oral & Maxillofacial Research, "the prevalence of OSA [obstructive sleep apnea] was significantly higher in patients with TMJ disorders and hypermobility compared to those without these conditions.")
What type of doctor should be consulted for degenerative disc and joint disease in the Richmond area? Also, what actionable steps can be taken to help with the conditions such as supplements, foods, and exercises?
With degenerative joint disease, typically if you're seeing a doctor, you're usually seeing either a rheumatologist for injections and medications or a spine doctor for injections. The problem with that is usually when you go to these physicians, they're injecting steroids into the joints. And if you know anything about steroids, steroids can actually make your connective tissues worse; it helps with inflammation temporarily but makes the joints worse. So, if you're hypermobile, I would definitely avoid steroids unless absolutely necessary. There are some spine specialists in town who are orthopedics, doing PRP injections; which are basically taking your blood, spinning it down to extract the plasma, and injecting it back in. This is an anti-aging trick they do. The thing about it though, is that if you can, the things I recommend to my patients when I see them are like: look, if you have this degenerative issue, we need to change your nutrition. One of the big things is changing your diet from an acidic diet to an alkaline diet. If your diet is acidic, which is basically the typical American diet, what happens is your body actually pulls nutrition out of your bones and alkalinity out of your bones to neutralize the diet. And one of the results is that when your bones remineralize, they don't remineralize correctly, leading to arthritis. So, actually, having an alkaline diet, which includes bone broth but also green leafy vegetables and minerals, supplement-wise I like things like magnesium and potassium citrate. Also, buffered vitamin C; there is a product called Vitamin C Guard which is sourced from a root in South America. It's actually a non-corn-based vitamin C. These are some great supports for that. You can use peptides; peptides are used for inflammation. One of the things I've been using recently, which has been really great, is a product called SPM Active or SPMs. And so, this is actually an extract of extractive fish oil. It's the stuff in your body that regulates inflammation and can be a powerful tool to calm this inflammation. I've had many patients have great results with it, and my wife has had good results with it as well.
What can be done to slow down or improve the loss of cartilage? And is there hope for improvement for individuals who have undergone several surgeries?
If you have undergone surgeries, the first thing you need to do is work on joint strengthening. That's where exercises come into play because someone who has already had joint surgery has, by definition, unstable joints due to the surgery and the imbalances it causes in the body. When getting a joint "fixed," you actually damage nerves and your body can't feel the joint "fixed" as well. Even though you have fixed the issues, it can still break down quicker, which is why people require two, three, or even four surgeries in the same joint. Therefore, it is crucial to work on muscle strengthening and performing Pilates-type exercises. It varies depending on the joint; for instance, a knee joint requires control. Furthermore, Qigong is great for joints such as the hip, back, knee, and spine since it uses body weight and not a lot of weight. Those are some basic things you must consider.
What therapies offer the most pain relief for hypermobility symptoms? Are there any other alternative therapies to consider besides massage, acupuncture, and neurofeedback?
There are a lot of things that you can do to manage the pain associated with hypermobility. One of the solutions I found to be effective, especially if your pain worsens throughout the day, is an ice plunge. Basically, fill your bathtub with cold water and hop in to reduce the pain you experience. Just that bone pain is actually small micro-tears. What happens is that micro-tears cause inflammation. So the stretchiness causes the tear, which causes inflammation, which causes pain, so an ice bath is a nice way to calm it down. Other therapies you can use are electrical stimulation therapies that help calm the nerves down. TENS units can be also very helpful, you can buy this one from amazon. Another device is called Quell, it's a peripheral stimulation device and it’s FDA-approved for pain. It has a cool trick that calms down your brain’s response to pain. Also, medications like low-dose naltrexone and a bunch of other things on that line. SPMS can be great for this kind of pain, typically the dose is three pills, twice a day. And then you can take it like three to five days, two twice a day, and then you can do a maintenance dose. High-dose curcumin is also great, but you might want to get a highly bioavailable form of curcumin. Typically, CuraPro by EuroMedica it’s like almost 500 times more bioavailable than a standard turmeric extract. It’s super helpful and you can take up to 10,000 milligrams of turmeric, which is a lot of turmeric but it can be a very powerful anti-inflammatory. Of course, trace minerals and collagen. Try the whole body collagen, it's a chicken product that has like rooster comb spine back stuff in it. Try that for a bottle or two and then go to the pure paleo, which is more of a bone broth protein, just see if you feel better on one versus the other. And then the Trace Minerals I mentioned before, those are the basic things that can be super helpful for your connective tissue kind of pain you’re talking about.
Are there common metal toxicities or viral components associated with degenerative disc and joint disease that should be addressed?
Mercury and Lead are two big metals that can be associated with abnormal
calcification of anything, whether it's in your heart or its in your joints. For viruses, no,
but if you have tick-borne illnesses like Lyme, Lyme loves low-oxygen tissues, so it
tends to go to joints and fascia. So, that's something that I typically look for if
patients have these lots of weird pains. We can do a tick bite, vector-borne illness
check. Viruses? No, but the other two, as far as I know.
How much homemade broth would you need to drink every day to get the right amount of collagen?
Generally, you probably want to do 8 to 12 ounces of bone broth a day. We put it in soups and stuff we make at home. So in our family, probably a couple of gallons a week.
Is rebounding okay with MCAS?
With MCAS, yes. It should not flare MCAS but MCAS is MCAS. It does what it wants to do. You should listen to your body but there’s no specific reason why. If you actually exercise and get flares, I think about something called Alpha-gal. If you’re someone who exercises and gets weird kinds of symptoms and rashes and hive-like stuff, then you might need to get checked for something called Alpha-gal. But rebounding itself should not do that. Unless you have Alpha-gal or something else weird.
Is rebounding recommended if you have POTS?
POTS is tricky. Those of you who know have POTS know that it's tricky. Basically, listen to your POTS. A rebound can be very helpful, but if you’re having like a flare of it, sometimes it’s not so much.That’s where doing isotonic exercises like wall squats or just doing isotonic contractions of your low extremity, just like flexing the muscles can be helpful. In general, if you don't have severe POTS or you're in maintenance, it can be absolutely helpful for your POTS because it is actually working the muscles that are important for contracting and getting blood to go to your brain. So if you're in a maintenance phase or not flaring, then it is absolutely great. If you are flaring, then just kinda listen to your body. Because if you have POTS, you also probably have a little bit of mast cell stuff going on as well. So they tend to react strangely.
Would a broth be best for hypermobility, since it has high amounts of protein? Would that be a good idea?
Yes, bone broth is good. So, when I was discussing the GABA, the product's actual name is 200 milligrams of Zen and it contains both GABA and altheine. Therefore, it's equal to 200 milligrams of each. It's simply called '200 and you can take two capsules of it three times a day for a maximum dosage of 500 milligrams. This is a good dosing range.
What do blood tests show about cortisol levels? Is there a way to better assess your stress levels and cortisol levels?
The best way to do a cortisol check is to actually measure cortisol. Because you need a morning, first morning awakening sample. You also need samples taken at 11:00 AM, evening, and night. Thus, you must check in four times throughout the day to observe how your body reacts to stress during the day. It's called a four-point cortisol test, and you can do that with blood, but it's like you have to go to a lab; you can't get tested at 7 in the morning or 11 at night. So, the new standard of care according to Up to Date, which is the most up to, it's actually the most up to date evidence-based compendium used in universities around the country right now actually states that salivary cortisol is actually the standard of care now for testing those levels. I do not know any local endocrinologists doing that, but according to Up to Date, that’s the new standard but a salivary cortisol is what you want to do a four point cortisol.
Why would someone be reactive to fermented food?
There are a lot of reasons. There’s a thing that is called histamine intolerance, which you can see with some patients with mast cell issues. There’s elevated histamine levels in the fermented food. I personally think it's more of a microbiome response because if your gut bacteria are really messed up, you're basically invading it with healthy bacteria. And so I remember my first experience with fermented food was that my belly was blowing up. Becky may remember it too; I was literally going to Walgreens at midnight because I was in so much pain from just a couple tablespoons of sauerkraut. But histamine is the most commonly quoted thing. I think it's probably more of a microbiome issue because, I mean, histamine is kind of, sort of everywhere and then your body actually makes histamine. So it's not a purely histamine issue. I think it's really more a microbe affecting your microbiome and your inability to tolerate that due to dysbiosis or the bad bugs in the gut. But if you search it on Google, people all say it's a histamine thing.
For someone (with rheumatoid arthritis) who has a very hard time exercising because it flares up her joints. What do you suggest?
For exercising, Qigong is super awesome because it’s very super gentle even for flaming joints. You are not doing each severe movement and it’s really interesting because you’re doing a breathing practice, breathing in one direction. While you’re doing that, you’re actually gently squatting and it’s really kind of cool that way it works. It’s perfect for people with joint issues. If you have rheumatoid arthritis, in my clinical experience and this is just for educational purposes only, but patients with rheumatoid arthritis it’s usually in their gut, it’s their microbiome. And how do we get them clean? They have massive responses but it’s basically you’re reacting with chemicals made by the bacteria in your gut. The gut is really the center for that with psoriasis and rheumatoid arthritis, those are the two big things I have seen with huge results and sometimes you have to do extreme things with the gut to get people turned around.
How long does it normally take on this plan to notice improvements? I know it's different for everyone, but just looking for some hope.
It depends on how much you do. If you just do the diet first, and I mean, it depends on how you do it. So, if you do everything at once, just like the example of Jane earlier who had a response within six weeks. Obviously she wasn't super ill, she just felt cruddy. But it really depends on how much you institute - how much sleep you get, how well you regulate your stress and if you're strict with the diet. Becky and I were talking about people who say they tried gluten free for three meals a day but didn't help. It's like, well, it takes 28 days for the antibodies to react with gluten and get out of your system. So literally, if you don't do it, you won't be free of whatever for 28 days straight. You can't expect to begin to see a response immediately. So it's really how all those things go together that will determine how quickly and how strong of a response you have. But it's almost like the worst, and it's a weird paradox. The sicker you are, the more gentle you have to be with some of these things, as your body can't really handle some of the detoxification stuff that happens when you start implementing it. So it's almost like you can do radical changes when you're healthier, and when you're sicker, you have to do smaller changes. That is something to think about too.
Are there options for Alpha Gal people as far as glandular and collagen supplements? Is marine collagen good?
Yeah, it is. Well, with Alpha Gal, there are so many things you can't. It's not horrible though. I don't really like Alpha Gal; we don't get along well.Just so many things you can't do; it just throws a wrench in this stuff. As far as collagen, the whole body collagen is chicken-based Marine collagen, and Vital Proteins has a pretty good Marine collagen. Ortho Molecular has another collagen that is similar to the Designs for Health one. The only reason I called it collagen is that it's pretty much the same product, just with a different label. I didn't mention that one because it has a smaller scoop and only seven milligrams of protein. Those are your responses. There are some egg proteins out there in the market, but I haven't really seen any high-quality pharmaceutical grade egg protein products. Yeah, glandulars. They're all mammalian. You can't do the glandular if you have alpha-gal; that's either sheep or pig - both mammals.
Would a vibration plate be an acceptable replacement for rebounding? I have some hypermobility in the small bones in the arches of my feet, so jumping is tricky for me.
Vibrations do totally different things. It can certainly be helpful, but it is doing something different. Therefore, it can help with neuropathy, and it can also assist with proprioception. If you have a vibrating plate, you can stand on it, which will activate your joints more effectively. So you can actually do, like, almost a tai chi kind of thing on the vibrating plate gentle squats, not like squats but more like going down with some stuff. And it actually activates all your joints even more. So if you have a vibrating plate and any issues, I would suggest doing it for at least 20 minutes a day. It can actually be very helpful; my daughter, my oldest's daughter with cerebral palsy, has been using it for years. It has had a big impact on our tone as well as her balance. So they are really cool tools.
Would cryotherapy work for addressing pain, in addition to acupuncture and neurofeedback?
Cryotherapy is tricky because you only do it for like 2 minutes, and so you really need to get your tissues cold. So the question is can you get your connective tissue cooled off enough with cryotherapy and you know, 10 minutes versus 2 minutes maybe. Also, you need to be able to access it on a daily basis or three or four times in a week. And cryotherapy is just not something that most people can access on a regular basis. You can definitely try it and see how you do versus a cold water bath. You need the water to be about 50 degrees; in reality, in the wintertime, most water comes out between 50 and 55 degrees. So in the wintertime, you can just turn the faucet on and get cold enough water.
Do you see people making more dietary changes once they begin? For example, in my case almost everything I eat makes me feel bad. Most fermented foods have a strong flavor and make me gag. I don't think I could stomach a lot of the dietary changes, but taking supplements to begin the process and then, once we start to not feel as bad, trying to do more of the actual diet changes might be something that works.
Absolutely, that could be beneficial. Another option might assist too. From my observations, patients can sometimes have an intense limbic response where their mind shifts into a fight or flight mode and they start to respond with fizzy food items. One patient couldn't even tolerate water sometimes. It was really crazy. We had to do something, as she couldn't take supplements. She was eating things like lamb and pears. It was quite strange. We had to step back and ask ourselves why her body was reacting this way, and ultimately it was a stress response. It was a brain-based protective response, so we ended up doing this thing called laser meridian therapy on her; it's a type of biofeedback using muscle testing that basically calms the brain down. Annie Hopper's Dynamic Neural Retraining is a great tool to support individuals who are struggling with this. Whenever I encounter cases like these, I try to take a step back and get further insight into the issue. Oftentimes, it has its origin in brainstem trauma which causes misinterpretations of data that consequently result in strange reactions. To correct this, we need brain retraining or therapy. If someone has something like that, I usually recommend visiting that, whether it's doing laser meridian therapy; sometimes acupuncture can help, but you can react to the pain. There's Dynamic Neural Retraining and Limbic rekindling. One of the links on the sheet from last time actually has trauma breathing. It's from Sachin Patel. He does Breath Training and Breathwork. I'm curious to see how you respond to that if you notice a calming down of some of your symptoms for a short while. Because if you do an hour of breath work with Sachin, you will definitely have some kind of brain-based neurological response. You need to take a step back and realize it is your brain hyper-responding to the stimuli. It may not actually be an allergic reaction per se.
When my daughter takes C3 Curcumin, she experiences bad hot flashes and tummy upset. What other options are there? She gets headaches when she takes the recommended electrolytes, Hi-Lyte, E-Lyte, and Concentrate Trace Minerals, so she ends up not taking them. Do you have any advice on what she could do or what could be causing the headaches?
C3 Curcumin is very potent. It is highly bioavailable, so it may be too strong for your daughter.If she's using turmeric in her meals, you could try Gaia Herbs, which has a turmeric extract. There are different ways of extracting turmeric and getting curcumin (C3) which is more potent. I use a product called CuraPro by EuroMedica which is the most potent one. Some people don't tolerate it because you have to realize that curcumin helps with detoxification as well as producing bile. So it's doing a lot of different things in addition to helping us; it also helps with digestion and anti-inflammatory. So it could just be too powerful for her. You said your daughter, so it depends on how old she is, because usually C3 is usually for adults, since it's really powerful stuff. Also, I guess the question is how old your daughter is and how many she's taken of the Hi-Lyte. If you get it with just the Hi-Lyte and just E-Lyte, and just the concentration, that makes me think she might be super dehydrated. Sometimes that happens when people get electrolytes and they have significant issues with fluid balance. Sometimes, as well, with the electrolytes, you need vitamin C to actually get them into your cells. So, if you ever look at some electrolyte formulas that actually have vitamins, like vitamin C, in them, and sometimes think about how some people just react to all kinds of stuff if they are hypermobile. An interesting thing I read is that, according to the textbook I actually have here. If you want to read a great book about hypermobility, it's right here. It's a little dense and thick, but it basically deals with all things hypermobile and it's actually a text meant for regular people but can be a bit dense. But it's really interesting, because I was reading this book about a couple of months ago and I didn't realize that people with hypermobility can actually react with cellulose, which is in capsules. So sometimes when people have headaches with these things, they are fillers in them. The concentrate doesn't have many fillers in it; so it's a dehydration issue. The Hi-Lyte does have the capsule. I'm not as familiar with E-Lyte because I don't use it a lot of it. Hopefully, these are some things to think about. Perhaps the other thing is that you may need more magnesium glycinate if you're not getting enough magnesium. You can get a powder form of it that can help with headaches. So, you might need to front-load some magnesium first. Thorn makes a magnesium glycinate powder that is a natural sweetener that gives a nice flavor. That might be something to think about as well. It's like starting with a higher dose of magnesium before doing the electrolytes or taking some Vitamin C and seeing if that affects the headaches.
What is the connection between headache and hypermobility? Is there anything you can do for them?
Yes, so there are different kinds of headaches. The kind of headaches you tend to get with hypermobility are due to the fact that your head is a little loose in the back of your spine and so you get a little sliding. So you get this tightness, almost like a headache if you take your hand and put it in the back of your head and feel the little bumps there; you get a headache right there in the back of your neck and you also get tightness throughout your neck. Basically, what happens is that because of the looseness in that area, the surrounding muscles tighten up and you get these headaches in the back of your neck on your head, which are different from migraine headaches, which tend to be behind your eyeballs in your frontal area. Cluster headaches tend to start in the temples or TMJ. These actually start in the back of your head. One of the things that you can do about it is therapy. We can work with a physical therapist who specializes in cryotherapy or hypermobility. They will do exercises that help take the pressure off and strengthen his muscles. So you actually have less movement back there. But you'd need to get with a physical therapist, an orthopedic one who specializes in that. Most physical therapists have no idea what you're talking about when you talk about this.
The histamine recommendation you gave lists some of our regular foods, which we feel have benefited us greatly with our gluten-free diet, such as eggs and sauerkraut. I'm guessing they mean do we have to avoid those if we feel like they're helping?
This is not applicable to everyone. The problem is that some people with hypermobility and MAST cell issues have histamine sensitivity, which is really a pain. They're not making enough of the right enzymes so they can deal with histamine-rich foods. So, sometimes, fermented foods like sauerkraut are high in histamine, which are super healthy for you. But this group of people tends to be reactive to them. If you're working with naturopaths and dieticians, they usually just do these histamine diets, which I don't personally do because they are so restrictive. I usually just give people enzymes to help break down the histamines. That's an easy way to deal with histamine sensitivities, but by no means should those who don't have such sensitivities remove onions, apples, sauerkraut, and kimchi from their diet. Don't remove those things from your diet unless you have a histamine issue.
Personally, I work on people's guts and give them DAO, a type of enzyme that can break down the histamine, so they can take it with meals and still eat those foods. We've kind of defaulted to a paleo-type diet if you have hypermobility and an autoimmune issue. It's a really good gold-standard diet and food plan that you can follow as an autoimmune protocol. The Autoimmune Paleo Diet is "Paleo Plus," meaning it's based on the Paleo Diet but with the addition of removing all things autoimmune.
The Autoimmune Paleo Diet is a very powerful tool - I've had multiple patients use it alone to deal with rheumatoid arthritis or inflammatory bowel disease. It's a very strict diet: Paleo I can do every day. And it's not hard, though. I mean, when you're paleo, you are kinda removing an extra layer of things, which does make it difficult. But it is like the most powerful anti-inflammatory diet. The trick is that if you remove something, you gotta put something back in. So, if you remove, say, wheat, bread, or dairy, make sure you are putting something in with protein and fiber that will replace them. Don't just take things out; otherwise, people may end up eating only 700 calories and becoming malnourished.
You mentioned a supplement for electrolytes, if we have an imbalance will this show on the blood tests?
The problem with blood testing is that they are only looking at potassium, chlorine, and sodium. Yes, they look at bicarbonate and glucose, but they do not look at magnesium, zinc, or phosphorus, or intracellular potassium. They only look at serum, so the problem is that the typical blood test only looks at the major components, such as sodium and potassium chloride. It does not look at magnesium levels, which are important. The other thing about the blood test is that only about 4 to 5% is actually in your blood, potassium and magnesium are mostly in your cells of your body. This is something I learned basically when I was in Medical School 101; if someone comes with a low potassium level or below normal in the Emergency Room with heart issues or diabetic issues, you have to give them lots of potassium because by the time it's low in their blood, it's low everywhere else.
Looking at blood levels and seeing that all your potassium is 3.7, that is normal. It's a bit low for normal levels and it's likely to be low in every other cell of your body. In addition, there are also functional levels. When I look at potassium, I want someone's level to be over four; even if their level is 3.6, which is normal, their whole body may still be low on potassium.
Even with those ranges that are "normal," it's kind of low-normal and probably represents 5% of your body. It's the same thing with magnesium, which are not checked in most metabolic panels. So, for someone with this, is it just a good idea to take electrolytes? In general, yes; one of the things with dysautonomia is that it's really bizarre.
What happens is this: From your kidneys down, your kidneys sense all of this extra fluid. From the kidneys down, they pee out the extra fluid. So when you drink water, it goes right through you. But I said from the kidneys down, which means that from your heart up, you have less blood pressure. As a result, your brain, which controls everything, is not getting enough fluid. So, what happens is that all of the hormones that your brain makes for low fluid volumes get ramped up, while your kidneys are sensing that you're getting fluid overloaded.
And so, what happens? You get this really crazy disequilibrium and it becomes like a race to keep things imbalanced. That's where things like compression stockings and certain exercises are huge. With the electrolytes, you have to get those into the cells. So, just taking those helps with this whole dysregulation, particularly magnesium, potassium, and trace minerals.
And you just have to get enough volume as well. So, that's important; bicarbonate can be super helpful too. Like a lot of my patients with this, giving them lactated Ringer's actually works way better than just plain old sodium chloride. Lactated Ringer's are just lactate and sodium chloride.
Magnesium and electrolytes are two components you can take in your diet. Certain types of lactic acid in active foods help get the electrolytes and minerals into your cells. Eating a mineral-dense diet, supplementing with extra minerals and electrolytes, and adding vitamin C with fluids can aid in getting these elements into your cells. This type of equilibrium between different parts of the body is part of the dysautonomic effects.
I have Alpha Gal, which greatly limits my diet. How do I know what supplements I can have when I have Alpha Gal?
So, Alpha Gal, you have to get a pharmaceutical-grade supplement and you have to get one with cellulose. That's the starting point. Avoid gelatin, of course. If you get one designed for health, they do a good job; their supplements are mostly in cellulose capsules. Just look for most minerals and antioxidants; they will tell what they are sourcing these things from. With supplements, it's a lot easier than with medications because you have no idea what's in the medicines. However, if you get a high quality supplement, everything will be listed on the container. Unfortunately with medications, you have to look at the package insert to find out what is included – for example, sometimes animal sugar extracts are hidden in different things.
I do not tolerate exercise very well. I do not seem to build endurance, and often feel awful after exercising. Does exercise have the same benefits even when it causes the stress of intolerance?
So that's this thing called a push crash phenomenon, which is very common with conditions like chronic fatigue and fibromyalgia, as well as parts of dysautonomia. What happens is your exercise tolerance has decreased over time; eventually daily activities can leave you exhausted - for example, going shopping and coming back totally drained. You still need to exercise, but you need to do some kind of graded exercise where you find out whatever that threshold is for you and you just don't hit it. So, for example, if your threshold is two hours, but two and a half hours leaves you exhausted, then you should go out for two hours.
If you can walk around the block once or twice without crashing, that's what you should do. Increase your activity gradually by 10% per week and don't do anything that pushes you to crash, because every time this happens, you lose a part of your reserve. And if you push yourself day after day after day, you will actually get worse over time. Exercise is still important, but there are also certain supports for your brain because this is ultimately a dysfunction of your brain, mid-brain structures, hypothalamus, and pituitary; they are trying to put you into a kind of hibernation state. So there are supports you can do for that as well, but if the exercise part, you just have to do graded exercises. That's something we have been doing for 15-20 years with standard chronic fatigue patients.
If we are taking trace minerals and drinking reverse osmosis pH-balanced water, do we still need to add electrolytes to our water?
If you're doing reverse osmosis, you really need to add trace minerals. But outside of that, for regular water, do you want your minerals? The extra stuff is related to if you're hyper-mobile. If you are hypermobile, then you still need all that extra stuff.
What does eat pluck mean?
Eat pluck is a herbal supplement. It’s organ meat based and they put spices into it that can be used to flavor food.
How much hibiscus tea is safe to drink daily without lowering blood pressure?
Typically, a medical dose of tea is four to six cups, so I'd probably say less than four cups. Most of the time, if you don't have high blood pressure issues, these things won't lower your blood pressure. It's really funny even with medications: one of the things I learned when I was in medical school was that if someone takes a blood pressure pill like one pill and they don't have blood pressure problems, it won't lower their blood pressure because their body is in equilibrium. So, if you're someone who does not have blood pressure issues, you won't lower it by drinking hibiscus tea.
With POTS and SIBO, which should be treated first?
That actually depends. If you're dealing mainly with low blood pressure, ultimately nothing will work in your body unless you get the blood pressure up. So, you really need to address the POTS first with the basic supports. And that handout, I think you all got from session two had a whole big list of things for POTS. But part of POTS is actually SIBO. Because SIBO can have some effects on your immune system and neurological system, it can make your POTS worse. Once you stabilize your POTS, you need to deal with SIBO, which will help the POTS more. Immunoglobulins and low-dose naltrexone are two therapies that can help regulate your gut and neurological system in POTS and SIBO at the same time.
How can you correct low chloride and blood work?
Typically, it is low in sodium and low in chloride; they usually go hand-in-hand because salt contains sodium chloride. If it is only low in chloride, that can suggest a kidney problem, which usually needs to be investigated by your doctor.
For someone (with rheumatoid arthritis) who has a very hard time exercising because it flares up her joints. What do you suggest?
For exercising, Qigong is super awesome because it’s very super gentle even for flaming joints. You are not doing extreme movements and it’s really interesting because you’re doing a breathing practice, breathing in one direction. While you’re doing that, you’re actually gently squatting and it’s really kind of cool that way it works. It’s perfect for people with joint issues. If you have rheumatoid arthritis, in my clinical experience and this is just for educational purposes only, but patients with rheumatoid arthritis it’s usually in their gut, it’s their microbiome. And how do we get them clean? They have massive responses but it’s basically you’re reacting with chemicals made by the bacteria in your gut. The gut is really the center for that with psoriasis and rheumatoid arthritis, those are the two big things I have seen with huge results and sometimes you have to do extreme things with the gut to get people turned around.
How long does it normally take on this plan to notice improvements? I know it's different for everyone, but just looking for some hope.
It depends on how much you do. If you just do the diet first, and I mean, it depends on how you do it. So, if you do everything at once, just like the example of Jane earlier who had a response within six weeks. Obviously she wasn't super ill, she just felt cruddy. But it really depends on how much you institute - how much sleep you get, how well you regulate your stress and if you're strict with the diet. Becky and I were talking about people who say they tried gluten free for three meals a day but didn't help. It's like, well, it takes 28 days for the antibodies to react with gluten and get out of your system. So literally, if you don't do it, you won't be free of whatever for 28 days straight. You can't expect to begin to see a response immediately. So it's really how all those things go together that will determine how quickly and how strong of a response you have. But it's almost like the worst, and it's a weird paradox. The sicker you are, the more gentle you have to be with some of these things, as your body can't really handle some of the detoxification stuff that happens when you start implementing it. So it's almost like you can do radical changes when you're healthier, and when you're sicker, you have to do smaller changes. That is something to think about too.
Are there options for Alpha Gal people as far as glandular and collagen supplements? Is marine collagen good?
Yeah, it is, marine collagen. But with Alpha Gal, there are so many things you can't do or take. It's not horrible though. I don't really like Alpha Gal; we don't get along well. Just so many things you can't do; it just throws a wrench in this stuff. As far as collagen, the whole body collagen is chicken-based Marine collagen, and Vital Proteins has a pretty good Marine collagen. Ortho Molecular has another collagen that is similar to the Designs for Health one. The only reason I called it collagen is that it's pretty much the same product, just with a different label. I didn't mention that one because it has a smaller scoop and only seven grams of protein. Those are your responses. There are some egg proteins out there in the market, but I haven't really seen any high-quality pharmaceutical grade egg protein products. Yeah, glandulars. They're all mammalian. You can't do the glandular if you have alpha-gal; they tend to be either sheep or pig - both mammals.
Would a vibration plate be an acceptable replacement for rebounding? I have some hypermobility in the small bones in the arches of my feet, so jumping is tricky for me.
Vibrations do totally different things. It can certainly be helpful, but it is doing something different. Therefore, it can help with neuropathy, and it can also assist with proprioception. If you have a vibrating plate, you can stand on it, which will activate your joints more effectively. So you can actually do, like, almost a tai chi kind of thing on the vibrating plate gentle squats, not like squats but more like going down with some stuff. And it actually activates all your joints even more. So if you have a vibrating plate and any issues, I would suggest doing it for at least 20 minutes a day. It can actually be very helpful; my daughter, my oldest's daughter with cerebral palsy, has been using it for years. It has had a big impact on our tone as well as her balance. So they are really cool tools.
Would cryotherapy work for addressing pain, in addition to acupuncture and neurofeedback?
Cryotherapy is tricky because you only do it for like 2 minutes, and so you really need to get your tissues cold. So the question is can you get your connective tissue cooled off enough with cryotherapy and you know, 10 minutes versus 2 minutes maybe. Also, you need to be able to access it on a daily basis or three or four times in a week. And cryotherapy is just not something that most people can access on a regular basis.
You can definitely try it and see how you do versus a cold water bath. You need the water to be about 50 degrees; in reality, in the wintertime, most water comes out between 50 and 55 degrees. So in the wintertime, you can just turn the faucet on and get cold enough water. For these reasons I prefer cold water baths over cryotherapy.
Do you see people making more dietary changes once they begin? For example, in my case almost everything I eat makes me feel bad. Most fermented foods have a strong flavor and make me gag. I don't think I could stomach a lot of the dietary changes, but taking supplements to begin the process and then, once we start to not feel as bad, trying to do more of the actual diet changes might be something that works.
Absolutely, that could be beneficial. Another option from my observations, patients can sometimes have an intense limbic response where their mind shifts into a fight or flight mode and they start to respond to food items. One patient couldn't even tolerate water sometimes. It was really crazy. We had to do something, as she couldn't take supplements. She was eating things like lamb and pears. It was quite strange. We had to step back and ask ourselves why her body was reacting this way, and ultimately it was a stress response. It was a brain-based protective response, so we ended up doing this thing called laser meridian therapy on her; it's a type of biofeedback using muscle testing that basically calms the brain down. Annie Hopper's Dynamic Neural Retraining is a great tool to support individuals who are struggling with this. Whenever I encounter cases like these, I try to take a step back and get further insight into the issue. Oftentimes, it has its origin in brainstem which causes misinterpretations of data that consequently result in strange reactions. To correct this, we need brain retraining therapy. If someone has something like that, I usually recommend brain retraining, whether it's doing laser meridian therapy; sometimes acupuncture can help, but you can react to the pain. There's Dynamic Neural Retraining and Limbic rekindling. One of the links on the sheet from last time actually has trauma breathing. It's from Sachin Patel. He does Breath Training and Breathwork. I'm curious to see how you respond to that if you notice a calming down of some of your symptoms for a short while. Because if you do an hour of breath work with Sachin, you will definitely have some kind of brain-based neurological response. You need to take a step back and realize it is your brain hyper-responding to the stimuli. It may not actually be an allergic reaction per se.
Is it okay to use these liposomal formulas with sunflower lecithin, or whatever is in them?
Yes, you are supposed to avoid seed oils. Sunflower is a seed and oil in most sunflower products are expeller pressed, which means they create a lot of heat and they actually create rancid oils.
That's the reason why, when you do a liposomal product, like most liposomal products in the nutraceutical world, you actually have to use sunflower. But you have to make sure it's not expeller pressed sunflower oil. So that's one of those things you need to check out with the manufacturers.
Certain products, like Quicksilver, have a liposomal glutathione that makes pure encapsulations using sunflower extracts but not the bad kind. As a general rule of thumb, you are correct to avoid seed oils.
Dr. Hartman said a physical therapist who specializes in hypermobility is best. Is there a list of recommended physical therapists in the central Virginia area?
You can check out the recommended physical therapists who specialize in hypermobility on this website: <a href="https://orthopedicptinc.com/our-team/">https://orthopedicptinc.com/our-team/</a>
In one of the videos, he talked about how due to the lack of core strength the kidneys may not have enough support and may contribute to high blood pressure. Is this something that can be changed or are blood pressure medications the only way to address this?
No there is not a direct way. With this, you would need to focus on general connective tissue to support nutrition. avoidance of chemicals, and detoxification support. visceral manipulation could be helpful, but that is typically for issues, not kidney issues.
Are higher than normal cortisol levels associated with hypermobility?
We do discuss this in the course. due to the. micro-injuries that occur with hypermobility, there is a low-level activation of the central nervous system from the nerve endings, which does result in low-level cortisol elevations.
Can pain suddenly develop in hypermobility syndrome? About two months ago I woke up one morning with terrible pain in nearly every joint. My hands were not usually affected prior to this, but it is now intense enough that it hurts to type or even move a blanket. It also hasn't gone away and conventional doctors haven't been able to identify anything wrong. Is this something that can happen to hypermobility patients?
Sudden onset of pain is typically associated with some type of acute event. It could be on top of generalized hypermobility but usually, there is a trigger. This is where looking into exposures, history, tick bites. recent infections, gut health, and similar issues can help determine what the potential trigger may have been.
I've wondered if my 'fibromyalgia' wasn't really just these super tight muscles, which are of course tender when you press on them.
Fibromyalgia. is common in people with hypermobility. What happens with the loose tissue is that the fascia tightens down to protect it. And so there is a paradoxical tightness or loss in reigns of emotion in areas where there are lots of fascia in these individuals. But fibromyalgia proper is a brain. is a brain-based neuroinflammatory condition. related to an immune cell called a microglia cell.