I saw an Infectious Disease MD and this is the result (not good)

Discussion in 'Antivirals and Immune Health' started by Not dead yet!, Nov 23, 2018.

  1. Not dead yet!

    Not dead yet! Well-Known Member

    There are so many things she said that rubbed me totally the wrong way, but the worst was this: The way she is required to diagnose says that even if she tested someone for something rare like shcisosomiasis (sorry if I spelled it wrong), and it was positive, she would have to disregard it UNLESS THE PERSON SAID THEY HAD BEEN TO GHANA (exactly) and had swum in a specific lake there. She isn't even permitted to retest, even if it was positive the first time. She must ignore it completely as a false positive.

    I then said, but there's shciso in the Northern Midwest and in the Caribbean. She said "That's a different schiso."

    NOTE: Schiso was just an example, this applies to any rare tropical disease or anything that "developed" countries supposedly don't have.


    1. You have to use magic words to be tested. Only the best liars will be tested and treated.

    2. They do not permit American MD's to retest you, despite scientifically validated testing methods. So there goes their "evidence based" dogma.

    3. I got the impression that there is no "panel" for rare diseases to be tested for, or at least not one that she has access to. Each individual parasitic illness has to be separately tested and possibly ignored or treated based on what a person says in their "medical history."

    4. What kind of crap is it to say "that's a different schiso"? Sure there are different species, but the effects are still nasty. Who cares? Why not test for the one a person is likely to have come in contact with? (Is it just me or is that logical?)

    5. I had just been reading about it in Pubmed because I was trying to figure out why for the millionth time I have UTI symptoms, with blood and white blood cells but the culture is negative. And a quinolone stops the white blood cells and blood. I'm not convinced I have urogenital schiso, but I had hoped that my contact with the Caribbean and the areas of the US that do have it would've been enough to trigger a test. The symptoms fit extremely well.

    The entire thing was depressing but this was by far the most crushing.

    I'm tempted to go to Hunter-Hopkins Center right away just because I'm so mad, but I'm not sure that's going to address my body's tendency to allow every infection to run rampant. I'm thinking Dr. Horowitz is a better bet. She claimed that since I didn't have low blood counts, my immune system must be fine.

    It was a toxic mix of evidence-based and totally dogmatic lack of logic. I'm amazed she didn't see how she was contradicting herself.

    I'm not usually the type to seek the "there there, it will be ok" type of response on forums, but I feel really crushed and could use a bit of support, or even ideas of what to do next.
  2. Remy

    Remy Administrator

    I'm so sorry! Visits like that are the worst and so disheartening.

    As someone who has spent a decade chasing diagnoses and treating infections, I will say that I am starting to think that Zach Bush is correct when he says that it isn't the pathogen that counts, it is the poor terrain . And when we correct the terrain (ie our microbiome), naturally whatever pathogen we have causing problems will be crowded out .He says we see Lyme and EBV so often because they are the hardest, able to live in almost any terrain just like MRSA is prevalent in hospitals because we kill everything that might outcompete it with antiseptics and antibiotics.

    I don't know if he is right, but I'm done with killing protocols and focusing more on gut repair and repopulation with more beneficial bacteria. This approach seems to be showing more positive results than all the years of antibiotics and antivirals, though I also understand the need to leave no stone unturned.

    I hope you are able to find a practitioner to support you in whatever path it is you wish to take .Our system is just not equipped to handle chronic illness at all. :(
    Not dead yet! likes this.
  3. Not dead yet!

    Not dead yet! Well-Known Member

    Thank you, Remy, that actually does help and makes me feel less helpless, I really appreciate it.

    I was reminded recently about a medical concept called "dangling" the patient. It's when a practitioner doesn't believe they can do anything for the patient so they listen to the patient but don't offer any treatment or even diagnosis in most cases. The patient is left feeling like they hit a wall, and may be told that they should wait for emerging science to make a discovery. I had forgotten how that felt because my GP is so helpful in comparison. Here's where I first heard of it: https://letsfeelbetter.com/dangling-dont-settle-for-false-hope-in-treatment/

    Thank God for my husband who instantly called out the BS, reminding me in my worst hour that I wasn't crazy, the system of ignoring health problems is.

    Something interesting we talked about: I asked her hypothetically about what if a person has a transplant and has all these common viruses reactivated? What do they do therapeutically to recover the person's health. She then described GET!!!! For the first time, I understood where that idea comes from. (Graded Exercise Therapy)

    If we do come up with better and better treatments for ME/CFS, I bet we will revolutionize how people who receive transplants are treated too. The difference is, they don't have the metabolism issues, just reactivation issues. So of course they recover, their system can. Ours has an extra complexity added with metabolic problems. Although I'm not sure how much those two things occur together. Why would metabolism become decreased because the body is under attack? Is it just that the immune system is using up all the ATP? There are things I'm not super clear on.
  4. Not dead yet!

    Not dead yet! Well-Known Member

    Yikes, it's been a while since I tried to reset my gut biome. I'd forgotten how nasty some yogurt can be, I'm pretty sure one of them was just bad, but they all seem vile to me now.

    I usually like sauerkraut so I'm going to try that next. I've tried to make such things, but in this house it always "goes bad" and I assume that's because of the Stachybotyris. Now that I've cleaned that up, maybe it will be better, but I think the success of such things depends a lot on where you live.

    So anyway, I wanted to write back and ask if there's a plan you like for gut management. It seems especially interesting to do that with keto. I'm trying to get back to keto now because there's a treatment I want to do. A local functional MD is offering an IV treatment that only applies for people on keto. I remember gut management being kind of painful with keto. Every time I ate something like that I'd get gut pain.

    I'm tempted to get a pill-form bifidus and only use that. But that's not exactly biodiversity, lol. :)

    So I thought I'd ask for advice. I'ts been a while since I tried to modify my gut microbes.
  5. Remy

    Remy Administrator

    This is way too complicated for me to understand myself, but the immune system and the metabolic system are just now beginning to be recognized for being hopelessly intertwined. Not only that, but some pathogens can hijack the immune system for their own gain. And then, it can all go off track with the development of autoimmune diseases. I know that doesn't answer your question really except to say that I don't know either!

    I am curious to know what this is!

    Zach Bush has been interviewed a LOT in the past few years. You might look for his Bulletproof interview on YouTube. He sells a product called Restore that I use along with another product called ASEA (I just try to ignore that ASEA is an MLM product and buy it straight from Amazon). You can also buy a similar product to Restore from BioPure called Matrix Minerals. Basically, it is sourced from soil and helps to restore cellular communication in our gut (Restore) and mitochondria (ASEA). It all sounds kind of woo, but Bush makes a very convincing argument to me.

    Then, I use glutamine to heal the gut and colostrum/PRP to heal leaky gut. I also rotate in and out probiotics and digestive enzymes. Dr Terry Wahls recommends Vitalzyme. I like that one too, though there are other good ones.

    Keto works for me in terms of controlling my appetite, but avoiding gluten and dairy seems to be key for a lot of people. I use alternative milk products but still eat cheese myself. Keto and fasting will also change your gut microbiome in a hurry.

    Zach Bush says we should try to expose ourselves to as many different environments as possible to reap bacterial diversity naturally. Of course, this is not easy for the typical person suffering from MECFS. But you could try air fermenting sauerkraut outside if you are concerned about your environment inside. I also ferment coconut milk into yogurt. And get kimchi from the local Korean market. I'm hoping to get into fermentation more next summer. Cultures for Health is a great website for information and the book, The Art of Fermentation, is really great as well. I assumed that I would buy it and use it as a doorstop only, but I actually enjoyed reading it!
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  6. Not dead yet!

    Not dead yet! Well-Known Member

    Really wiped atm, but I'll answer about the IV therapy that's meant for keto. The description I got wasn't about testosterone, so it might help men more than me. The description about T levels is all news to me: http://www.primemdcenter.com/hcg-therapy

    I hadn't had time to talk to the MD yet, other than to confirm what labs he wants me to bring and I hadn't talked about this particular one on his website.

    There's another one he thinks will help me, NAD+ therapy. We did talk about that. Now that I've read the web description, I tend to agree.... bc the last thing I need with PCOS is more T. I feel like, here, guys, take mine! Life is so perverse at times. :wacky: It makes me wonder if my body's unbalancing my hormones in a bid to keep inflammation down.

    Talked to my GP today, great talk, very supportive about the ID doctor. His comment was that the more specialized people become in medicine, the more they see things in black and white. I really appreciate a doctor who is comfortable with shades of gray. I'm starting to recover from the shock.
    Remy likes this.
  7. Not dead yet!

    Not dead yet! Well-Known Member

    Wow, thanks, Remy. I only watched one video so far but Zach Bush seems like a great find. Like most people who know too much that doesn't fit into normal chatty conversation, he does go on for long periods of time. But it's a good kind of going on. You can listen to his mind putting stuff together from different sources. I like the way he thinks.

    I didn't find the Bulletproof video first, but that's ok, looks like there are a lot of interviews.

    What struck me the most is he said that about glyphosate being reduced through a better biome. It reminded me of Bruce Ames (PhD) who went from toxicology to nutrition science showing that toxics only hurt you if you have deficiencies, and recently showed that low nutrition status can switch what enzymes your body makes and can set a person up for chronic illness. I love these ideas. If I were well.... sigh... first I need to get well. Then we'll see.
    Remy likes this.
  8. Not dead yet!

    Not dead yet! Well-Known Member

    I've been watching other videos of his. I like the main points he makes here:

    And I've looked at a few rebuttals.

    Interestingly, the caveats I have about what he said aren't the ones that are commonly rebutted.

    People make a big deal about his math being "wrong" saying "It's exponential, not logarithmic" but actually you can convert between those, they're each an expression of a function so that's not a big woop. Few people get that far in math, so it's confusing.

    People say that there's evidence of coal tar being dangerous. But I'm not sure if brown coal has any coal tar, and if it has the same amount of science behind adverse effects. I'm thinking not, but I haven't yet looked.

    Edit: Coal tar is made by cooking the volatiles out of coal, ie, it's burned until tar forms. Unless the production of Restore is the same as the coking process, and as long as you don't burn the product before taking, I think it's probably ok. :D

    What people haven't pointed out, that I've seen so far:

    1. The classic scam pitch is "hurry, limited time only, get it now" and his speech, coupled with his solution can be interpreted that way. I'm guessing that's why he either talks about his product OR his philosophy, but tries not to over emphasize them together. The test for that would be, I wonder if he has patented his process for the extract. If so, then it weakens his philosophy a bit. It means that others who agree can't repeat it and sell it without licensing it. That may not apply to people in other countries, depending on trade agreements. But as a fan of anime, I can see how even a trade agreement can't give me access to the bulk of Japanese animation.

    2. He sounds like a denialist of pathogenic agents at times. When Europeans started coming in droves to the Americas, Native Americans did die in droves of smallpox. The Black Death did kill scores of Europeans before that. And Ebola still causes waves of death among people in some places. I almost want to ask him if people with HIV shouldn't take treatment. I expect his answer to that would be enlightening, but I'm hoping it wont' be laden with the concept of Karma. I'm done with that. So far I haven't seen him address the fact of pathogenic agents, except by inference.

    3. So he thinks all of this, but Organic is not required? !!! Maybe he's talking about USDA organic, which has been bastardized horribly, but Oregon Tilth is carrying on the good fight, and so are others. I'd like to see a biodynamic label become official in the US, and he does mention that. So I'm guessing he's just unhappy with the USDA interpretation of Organic. I can agree with such a criticism, but I haven't heard him clarify that point yet.

    4. He needs to be careful with the word Celiac. Most of the time he's talking about Non Celiac Gluten Sensitivity which is nebulous enough that theories are welcome. But Celiac has been around much longer than glyphosate. He needs to say "triggers" Celiac if he isn't going to catch a crab when a person with Celiac hears him. Celiac can be triggered, but the genetics has to be present. Luckily for him, the gene is there in about 40% of the human population. Everything else is a sensitivity or allergy.

    Overall though, I could've had that speech in my Environmental Science class back in the 1990s. It fits with what I learned and what I learned afterward. So I'm willing to give the product a try, it does seem unique. Fulvic acid and humic acid are similar products, but I'm willing to believe his is better, if for no other reason than I like someone who thinks deeply and sounds like a true believer. Human ego will keep him honest as long as he believes.
    Last edited: Nov 28, 2018
  9. Farmgirl

    Farmgirl Well-Known Member

    @Not dead yet! So sorry. That is demoralizing and dehumanizing. Don't give up, though, if you have the ability and time and money. I have been ill since I was 5 and now at 57 finally found some great physicians. They saved my life. I must drive 3 hours 1 way, but the relief is worth it.( My husband drives and I have a makeshift "bed" in the back of the car made from our couch pillows)

    You, too, are probably tired of the whole thing feeling like a game.

    Fly somewhere if you have to and are able.

    Dr. Horowitz seems great. He gets this stuff. There are a lot of independent laboratories out the now.

    Also, my blood counts ONLY went down AFTER treatment was started. I was shocked. All tgetsudden, I had low white cell count, low neutrophils and high eosinophils ....because, they said, my immune system was waking up and beginning to recognise the invaders.
    Hang in the, you are not alone.
    Not dead yet! likes this.
  10. Not dead yet!

    Not dead yet! Well-Known Member

    Wow that's amazing, that your blood counts changed!

    Yeah game is the right word. It's like I'm placing bets on who will help me. Expensive ones. :(

    I did try the Restore product ( a kind of humic acid ), and it instantly triggered herxing, one dose, at half the dose! I thought it was a fluke, but I tried it again more than 24 hours later, and it did it again, stronger herxing reaction the second time.

    I'm up to 12k mg of Vitamin C today and still have a slight headache and need to run to the bathroom often. Effective? yes Will it help me? not if I can't figure out how to stop this reaction. I can't afford the Zomig for the triggered migraines, lol. :p


    Next on my list is a bit of an update of my B vitamin regimen (finally trying real folate, not synthetic which makes me ill).

    Then seeing an accupuncturist who uses herbs and take no insurance. Thankfully the pay scale there is much less than a functional MD. I hope it helps.

    I'm not really considering NAD+ anymore because I think it's in my diet, which couldn't get any more clean or full of greens and fish. The better my diet the worse I feel actually. I've deteriorated despite eating very well, so I don't know if that's really it. I focus on organic foods so it's probably not the glyphosate, as my dose is likely to be much less than typical.

    Idk. Maybe I need to go live in the Yukon, and either freeze and starve to death or go hunting daily. Survival can still spur me to action. I can cook dinner if I must, it's painful, but possible. When I'm herxing like this, my emotional state is very low. I start wishing I were dead. I know it won't last, just a flare up, but it's pretty bad.

    Edit: I just realized, the one large not organic aspect of my health is supplements and drugs. Has anyone tested those for glyphosate?
    Remy likes this.
  11. Farmgirl

    Farmgirl Well-Known Member

    You are like me...always looking to up your game. Smart!

    Naomi Whittle talks about contaminated supplements in her book. It may very well be a factor??

    I was up to 10,000mg Vitamin C a day. My Functional/LLMD says that it helps rebuild the immune system. I have avoided all the illnesses that the rest of my family has had since I have been on it.

    Notdeadyet, please know you are not alone. These crashes we have are isolating and painful in many ways. It is not unusual for me to feel the uselessness of my life and let it drone into my mind like a carpenter bee. I just want to know what normal feels like. You too?

    When I crash, I have to be in bed most hours of the day or my heart rate spikes to 120. Making dinner is enough to knock me out for the count! Oh, the crippling pain! I am, though, thankful I can still shop for basics and walk around the house when I am have my 2 hours upright.

    Unless I slap together a cheap, quick dinner, but I get BAD ideas like using a magazine recipe to make something gourmet. Stupid me. Have to give up after the second step OR take 3 days to prep. OR the spouse usually gets stuck finishing my crazy plan with me giving instructions from bed.

    I hate crashes.

    Organic reduces one more thing our body has to deal with (chemicals).

    About herxing...i am Under the impression that that is just part of getting better. If I slowly increase a treatment, I still here, but after a month or two my body seems to level out. These are treatments that caused me to herx: Mepron, Biocidin, Doxycycline, Vancomycin, ABAB about killed me (herxed horribly) but now I am on steady dose. Do you have Lyme, too?

    You mentioned folate. Have you been tested for MTHFR defect?
    I have double 1298. I am on B12 shots and avoid folic acid, and must Sauna to sweat. You?

    I tried NAD once and it was too expensive and it didn't help.
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  12. Not dead yet!

    Not dead yet! Well-Known Member

    I smiled a real smile for the first time in days at the mention of giving instructions from bed part. :) That's such a good description of me and my hubby too! I guess moments like that prove I married the right guy. And how could he ride in and save me if I wasn't in need of saving? I didn't plan it that way, but this has brought us closer in one way.

    I don't have an IR sauna, I really should set one up, or buy one.

    Not sure on MTHFR, I had 23andme but they tell you next to nothing, and when I did promethease my focus was on Celiac (which I apparently have). Can't remember if I looked for that or not. It didn't come up in the "most significant" list so probably not. But I keep reading about it because it seems to hold an important part of the mystery that is metabolism.

    Lyme is uncertain. I have two of the five official strains positive but everyone claims that means nothing. Not really putting much faith in that denial.

    When I get back to feeling semi ok, I'll contact the guy who makes Restore and ask whether I need to change it or is it normal? Can hardly face a phone call atm, much less a complaint with communication back and forth.

    Starting to feel better. I've been keeping up with the 12k Vitamin C and drinking some baking soda + water in between doses bc that seems to help too.
    Last edited: Dec 6, 2018
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  13. Seven

    Seven Well-Known Member

    Sorry for the bad experience but Please take power and leave a review for the doctor’s unwillingness to help!!!! We need to start making a dent to every doctor that fails us!!!
  14. Remy

    Remy Administrator

    I think it's normal. I would just keep reducing, even if it starting with just a few drops in a glass of water.
    Not dead yet! likes this.
  15. Farmgirl

    Farmgirl Well-Known Member

  16. Farmgirl

    Farmgirl Well-Known Member

    I really agree with you. I think we can be firm, objective, measured and polite at the same time, but they need to feel the consequences of patients leaving their practice and us pouring our money into worthy health care professionals.

    No offense to the medical professionals on this site. I myself am an RN & a patient.

    On the other hand, I gave my LLMD a really good review. He deserves it.
    Last edited: Dec 6, 2018
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  17. Farmgirl

    Farmgirl Well-Known Member

    @Not dead yet!

    Glad you got a smile! There is a comfort knowing others deal with similar things with this disease, right?

    New post should be...how we give instructions from bed or couch or chair.

    When I amastuck in bed upstairs, I use my cell phone to call my husband downstairs on the landline! It works when I am in my "over did it, stuck on bed cuz I can't move" mode.

    It might be funny to hear people's stories.

    The thing that helped me with MTHFR test is that it explains why I have strong reactions to new treatments. So, I work up slowly.

    We had to move our tub out if our bathroom to fit the sauna in!
    Got it at Costco. Happy with it. I never sweat, so it is weird how much sweat us on me when I am done. I have to turn it up pretty high to break a sweat.

    I am gluten and dairy free. MUCH healthier that way. We have 5 kids (YES, I felt better while pregnant) and all 5 of them are allergic to dairy.

    How long have you been ill and looking for help?
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  18. Not dead yet!

    Not dead yet! Well-Known Member

    I just started xifaxan which seems to help a lot. When I'm off of it, I'll cautiously try restore again. I think I may have overdone it the first time.

    I'm thinking the best plan (after xifaxan) is to increase FODMAP foods carefully, then add a smidge of probiotics and if that's going well, after a few weeks, start with a few drops of Restore. I seem to do well with kefir, so I should try to learn to make it in the meantime.
  19. Not dead yet!

    Not dead yet! Well-Known Member

    I've been ill in one way or another for most of my life, except a grace period around age 10-17. But the severity really ramped up in 2003 after a food poisoning, and I think that finally produced a blood clotting event that ended up with multiple pulmonary embolisms. I never fully recovered from that, it happened in 2006. By 2012, I had quit two jobs without a prospect of another job because I simply couldn't do it. Too much stress, I thought, and not enough time off to recover. I used to be very strict about every year I had to have a week at the beach, no exceptions. And every three months, I had to go to a spa. But even that wasn't enough. I think the structure of full time work is not sustainable for everyone. I made mistakes and was short with people because I was so tired and needed a longer break. I couldn't relax enough in the evenings to go to sleep.

    Then for years the only way I survived was to take Ambien every night. Until that stopped working and I'd be awake all night in a dreamlike state! Getting off Ambien was awful for someone with migraines and continuing insomnia. So that was part of the problem that led to my final exit from work in 2012. I don't react well to many things, pain drugs, benzos, meelatonin even!

    Last year I found out I am Celiac, and I've been back and forth about dairy. Currently I'm avoiding it. It seems to be the casein. Goat milk seems less painful by a lot, so it may be the A1/A2 thing. But I'm giving it a rest.

    Glad to hear you have kids! My PCOS was too much. Not sure how I'd react. After the MPE, it took ages to convince any doctor to even give me minipills (hormone pills with only progesterone) because of the fear of clotting. I seem fine on that though. It has too strong of an effect though so I end up taking less than recommended, I cut them in half and that seems good. Losing birth control pills was a devastating thing in my life. It was keeping my body stable.

    I was on Lupron and that was awesome. But somehow the local docs don't want to give it once a month, and the 3-month shot makes me too sick.