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Oct 10, 2018 · Autonomic Dysfunction in Brain & Nervous System

Hey @tuckerdoodle.

If your symptoms started after your sinus surgery, it makes me wonder if you have a chronic CFK leak (spinal fluid leak). I have hEDS (Ehler's Danlos Syndrome), POTS, dysautonomia, MCAD, a chronic CSF leak in my lumbar spine, etc. I am prone to CSF leaks and have been dealing with one in the last year.

A chronic CSF leak can cause POTS and autonomic dysfunction. Look up Dr. Ian Carroll on YouTube. He explains how a chronic CSF leak causes POTS and how some people have recovered after fixing their leak. If you have a cranial CSF leak. Getting some who understands chronic leaks and knows how to fix them is extremely difficult. My leak symptoms were overlooked by multiple neurologists and neurosurgeons. Finally I told a neurosurgeon that I thought I had a chronic CSF leak and they "ruled it out" with MRI with contrasts, which rarely finds CSF leaks. Then I saw a neurologist who said he ruled out a CSF leak with an MRI with and without contrast to check CSF pressure, which rarely catches a chronic leak. Finally a new primary care doctor familiar with Chronic CSF leaks said I needed a CT Myelogram and she got my pain management doctors to order the testing. Sure enough I have a leak in a nerve root in my lumbar spine. I had a blood patch that worked at first but starting leaking again. Having a connective tissue disease (EDS) makes it hard for me to heal. Trying to get someone else to fix it currently.

Duke University and Cedar Sinai in Southern California both deal with cranial leaks. (They have YouTube videos as well that are helpful). Dr. Ian Carroll at Stanford doesn't deal with cranial leaks that I am aware of.

Do you have have sinus congestion, a runny nose, or post nasal drip? If so, it could be CSF fluid. CSF fluid tends to taste salty and even sweet. Do you get headaches?

With the GI issues and having been on antibiotics, have you been tested for SIBO (small intestinal bacterial overgrowth)? It can happen in dysautonomia but antibiotics can cause it as well. SIBO alone can cause a lot of problems, even systemic issues especially since it can lead to leaky gut. It can also cause GERD. If you are on H2 blockers or PPI's for the GERD, either can cause SIBO, make SIBO far worse, and make all sorts of health issues worse. They both interfere with digestions and absorption of nutrients. GI issues usually get worse in general on H2 blockers and PPI's. And PPI's can increase your chances by up to 50% for chronic kidney failure. My GI doctor referred me to siboinfo.com and a naturopathic doctor for more information about SIBO. Naturopathic doctors and Functional Medicine doctors have been dealing with SIBO much longer. My GI diagnosed it and treated it multiple times but doesn't understand diet, nutrition, and how to address motility issues to address SIBO after it is treated, which often means it will just come back.

Also, research zinc carnosine for reflux. There are medical studies out there about zinc carnosine. It helps me with GERD and gastritis better than H2 blockers or PPI's. It's awesome stuff. It was prescribed to me by my Functional Medicine Naturopathic doctor and it has been a game changer for me.

Getting checked for delayed food reactions can be helpful too. My PCP had me do USbiotek testing for food triggers.

Do you take magnesium? Vitamin D? Both are really common deficiencies. I am prone to vitamin D deficiency and my PCP said up to 80% of people in first world countries are deficient and magnesium is super important for many things.

MTHFR and partial methylation defects can cause a lot of problems too.

Also, there is a private CSF leak on facebook that is full of information and resources.

Good luck.

Aug 25, 2018 · Small Intestine Bacteria Overgrowth (SIBO) in Digestive Health

Rifaximin alone will not treat methane SIBO. It usually requires neomycin along with it, which has risks. But since you also have yeast issues (probably Candida along with SIBO which isn't uncommon) you might want to go the natural route for treatment. Antibiotics will only make yeast issues worse. You could see a naturopathic doctor who specializes in SIBO. I am seeing one for my chronic SIBO. It used to be hydrogen SIBO for years but now is methane. I also have yeast issues. My naturopathic doctor is having be try Candida SAP yeast formula by NFH. She said it can treat SIBO and Candida. There is a lost of other herbal antibiotics treatments for SIBO on siboinfo.com. The problem with SIBO though is that it will keep coming back if there is an underlying motility issue. I tried LDN (low dose naltrexone) multiple times but I can't tolerate it at all. To prevent relapse, they say it's best to take a prokinetic like LDN after treating SIBO to help it stay away. Ginger helps GI motility. I am taking it 30 mins after meals and before bed. I am really struggling with my GI motility still though. I have autonomic dysfunction and EDS. I am getting checked for Chiari again soon. My SIBO keeps coming back and back. I will see if this new natural treatment for a month helps.

Also, if you get a UTI again you should CIPRO and similar antibiotics if possible. CIPRO can cause permanent problems and had lots of risks for connective tissue. Things like tendon rupture and even spinal fluid leaks have been caused by CIPRO. I also have a chronic spinal fluid leak and many people I have talked to said their leak started after ciprofloxacin. Macro is best for a UTI if it is sensitive to it. It only effects the bladder, it's not a wide spectrum antibiotic. Many doctors will just treat with SIBO now instead of doing a urine culture to see what the bacteria is sensitive to. There are new FDA warnings that doctors are supposed to only use cipro as a last resort but most doctors don't know any better. My health went down hill after multiple rounds of Cipro. I have never felt the same since.

May 1, 2017 · Relentless bile reflux / pain in Digestive Health

Forgot to mention VSL#3 probiotics. My GI doctor recommended them to keep my SIBO (small intestinal bacterial overgrowth) in check. It’s worked better than antibiotics and Costco pharmacy carries them for a little cheaper. Some people have GI issues subside with strong probiotics like VSL#3. Lower count probiotics, especially with prebiotics like FOS, MOS, INULIN, CHICORY, etc, can actually make some people worse off. If one is prone to SIBO, which I tested positive for and am prone to due to having slow motility, basic probiotics make it worse. They have to be strong enough and not contain prebiotics or they just feed my overgrowth instead of get rid of it. I took 2 capsules of VSL #3 for a month and now only one capsule daily or every other day. Taking only 1 capsule a day max makes the bottle last 2 months for me, which is only $24 a month. If you try a potent probiotic like VSL #3 or one similar, and it helps, you probably have an overgrowth like SIBO. It’s a better a option than repeated antibiotics to treat SIBO. Mine kept coming back either way because of my motility disorder, which is blamed on my connective tissue disease EDS. So my GI doc just put me on VSL#3 instead and it works well. They don’t require a prescription. Natural food stores also carry potent refrigerated probiotics. You just want to look for at least 50 billion count, preferably 100 billion count, with more than a few strains of bacteria (8-10 strains of bacteria is really good).

May 1, 2017 · Relentless bile reflux / pain in Digestive Health

Two suggestions:

*Demand to be tested for SIBO (small intestinal bacterial overgrowth). It can cause all sorts of IBS and reflux issues.

*There is something called a hyperkinetic gallbladder. Look up Hyperkinetic Gallbladder Toronto, Canada 2009. I had a chronically inflamed gallbladder that didn’t show up on imaging. My hida scan before gallbladder removal surgery 96% ejection fracture with bile reflux. My hida scan only 6 months before that was 75%. I showed my GI doctor the hyperkinetic gallbladder article since I was having gallbladder attacks daily and throwing bile. He sent me to a surgeon even though he didn’t think it could be my gallbladder. Surgeon thought I was very much having gallbladder symptoms and agreed to surgery since everything else had been ruled out. Also, hida scans set off my pain. My gallbladder ended up being scared up, red and inflamed, and thickening of my gallbladder wall. None of which showed up on ultrasounds which the surgeon said isn’t uncommon. Pathology showed chronic inflammation of the gallbladder. It most definitely needed to come out, so glad it didn’t end up infected. I am still having some bile reflux 3 weeks post op but not like before surgery.

*Maybe request another hida scan if it’s been a while.

*Find a better GI doctor! Good luck!