Kind of disappointing Doctor visit and update.

Wow, what a hard choice. It is hard to find a doctor who knows Lyme that takes insurance. Since you have felt good about this doctor in the past perhaps you can chalk this visit as a fluke and give him another chance?

My regular doctor (PCP) visits got much worse the more I learned about Lyme and the effects on the body. I noticed that I began to argue with them and tried to discredit their diagnosis. I have since learned that I can have a better doctor meet if I describe my symptoms and ask questions politely and try not to outsmart the doctor.

It is hard to accept a diagnosis or treatment plan when you don't feel comfortable with it, specially if you know for sure that they are wrong. I guess that that is when it is time to walk away and get a new doctor. Or maybe you can use this doctor just for tests and stuff and use an LLMD to map out a treatment plan.

DB…

I have a few ideas but need a little more info:

I'm not sure what your lingering sx are so if you could share them, it would be helpful.

I like that your doc is taking a hybrid approach w/ abx and herbs, as I think it provides a good coverage. It's great that he has focused on thyroid, as dysfunction can really disrupt normal mechanisms throughout your body absolutely required for health, much less healing.

But you don't mention your detox protocol, which is as important as tx itself, particularly if you are struggling.

Your immune system creates inflammation as a means to deject stuff out of your tissues that shouldn't be there… so to speak. So, it's one sign that your immune system is functioning, but chronic inflammation can also be detrimental.

And your food intake is also critical. If you are consuming foods that are not nutritious enough, you're not providing your body enough fuel. And if you're also consuming foods that are difficult to digest and/or contribute to inflammation, since your immune system IS your gut, you're overburdening it when you need to support it. Gluten free foods are yes, full of troublesome grains that are nearly entirely GMO, but they are also processed, which is very difficult for your body to digest and not helping. Additionally, gluten free foods (unless they are whole foods) require a substitute for gluten, which many people have just as many problems digesting… so the moral of the story here is, no sugar, no dairy, processed foods and very minimal organic and GMO free grains. Not forever, but during healing.

p

thanks DB*!

So, here are my thoughts based on my experience, conversations w/ my LLMD and reading countless accounts of others:

Yes, you probably need to shift your detox up a gear or two. In lieu of saunas, detox soaks would be helpful, with epsom salts + sea salt + hydrogen peroxide (you can find recipes online) but start slowly, as your skin is your largest detox organ and always do dry brushing beforehand so that your lymphs don't get clogged up, causing a backup of the system. I like taking small doses of herbs like milk thistle seed and Burdock root, which help support liver. I'd also research other forum posts on detox or start a new thread, as there are many good protocols being used by others here.

Good call to use the caster oil packs! I often have upper/middle/lower back pain and every time, I've focused on detox and it has helped.

I would bet your facial pain is due to a sinus problem. It could be bacterial or fungal (mine was a massive fungal infection that caused chronic sinusitis, bronchitis and a whole host of other problems because various MDs kept treating it w/ abx instead of antifungals.)

Yeast/fungal overgrowth can also make your muscles sore and cause joint pain.

You are the only other person I've read about here complaining of hip pain! this plagued me for a year until I got past my first 3 months of IV abx. I still have lingering muscle pain but the hip joint pain that was so bad I couldn't walk, is mostly gone unless I sleep on one hip too long. I can't tell if your hip pain is joint or muscle but if it is muscle, my bet is it's neurological or simply due to y/f overgrowth. For neuro issues, try Wobenzyme Plus, which can help w/ inflammation. Many people have this kind of roving pain and benefit from "fibromyalgia" Rx.

Just a few thoughts. Hope it's helpful.

p

Hi P, I hope you will see this. I saw your other post regarding this and fluconazole and I have another question for you. Do you have any references that I can print out for my doctor regarding lyme and yeast having the same symptoms? Anything that would help me convince him that this may be my issue and he should prescribe the Nystatin powder?

Also, is there any down side in taking the antifungal if you do not have that issue?

At my appointment my doctor seemed to feel like he was missing something. Maybe this is it.

Also, a year and 1/2 ago when I was searching for my diagnosis I have a functional medical doctor give me a food sensitivity test. I scored over the roof for being sensitive to yeast. One way you can score high for a food is if you eat a lot of it, or have a lot of it in your system. I then assumed I had a lot of yeast in my system. I went on a yeast free diet for a long time. A lot of symptoms got better, but I was still sick.

What do you think of that?

Thanks!

DB*
My hip pain is definitely a sharp joint pain when I'm walking that turns into a sharp ache when I sit/lie. My finger joints are a dull ache and my muscle pain is a dull, heavy ache and weakness. I have bone pain in my legs that feels deep inside the middle of my legs that feels like a squeezing pain. Traveler suggested that it might be the nerves wrapped around the bone, sounds good to me. And the only pain that moves around is nerve, neurological pain. I do get weird twinges throughout my torso that gets better when my detox is good.

Regarding y/f overgrowth… Candida refers to a common strain but there are many, many more. Here is a very good resource for y/f overgrowth and has a great list of sx:
www.holistichelp.net/candida.html

If you still feel you aren't experiencing a lot of sx, I would first correct your diet, double your probiotic (make sure i b's live and has broad strains) and see if you feel the sx improve over the next couple of wks. If not, then you probably need some of the Nystatin powder.

p

DB*

Sorry, I missed your previous post.

I will look for a good reference about overlapping sx and will post it on this tread. But I think the next part of your previous post about the food sensitivities is most relevant to getting you where you need to be.

When I read this next part, I yelled BINGO! I had a few suggestions before, but knowing about your food sensitivities, gray suddenly became black and white. I have some very concrete info for you:

"Also, a year and 1/2 ago when I was searching for my diagnosis I have a functional medical doctor give me a food sensitivity test. I scored over the roof for being sensitive to yeast. One way you can score high for a food is if you eat a lot of it, or have a lot of it in your system. I then assumed I had a lot of yeast in my system. "

Yes, if your food sensitivity tests showed high antibodies for a lot of foods, that is a sure sign of "leaky gut," generally caused by damage from y/f overgrowth. And it is a BEAR to heal from. Literally, it takes years… I am still struggling, myself after 6 yrs or more. And I'm pretty sure you are too. So, it will be worth your effort to educate yourself and then we can help get your MD up to speed and he/she will be more amenable to prescribing what you need.

Here are posts I've previously written to help explain the connection between y/f overgrowth, leaky gut, food sensitivities, and ongoing sx and tx. I'm sorry, I will eventually have one comprehensive post to include in the "New to Lyme?" thread but don't have the capacity for editing right now. But there is good info on Leaky Gut below that I hope answers your questions.

If you had leaky gut before, and never really focused on it (SIBO tx is helpful but not the same), you likely still have it. Again, it is VERY difficult to treat, particularly when you're in the midst of lyme & co tx, but it can be done and it HAS to be done. 70 percent of your immune system lies within your gut and all the damage is preventing it from functioning well and as we all know, you won't heal from lyme & co w/out the natural support of your immune system. Also, the GI damage is keeping you from processing nutrients and likely some of your tx appropriately. It's a nasty, vicious cycle… So let's get you on a better path.

I would advise these next steps:

1. Find a VERY GOOD naturopath and/or nutritionist or integrative specialist who knows about leaky gut (don't rely on your LLMD). Find this out by asking them what their dx and tx approach is, share it here and I can help you review it.

2. Since it's now pretty clear you have leaky gut, you need to double the probiotic levels I previously mentioned… do 800 billion at the end of the day before bed, at least 3 hrs after your final antimicrobial tx dose for the day. If you're doing your tx 7 days a week, maintain the 800 billion. If you're not doing tx every day (I only take my abx 5 days a week) you can reduce the probiotics to 400 billion on your off days.

3. Remove all sugars, simple carbs (anything white: rice, potatoes, breads, starches), all grains, ALL processed foods. ANd for the next couple of months, no fruit. Focus mainly on dark, cooked veggies and animal protein. No salads or raw veggies or psyllium husk or other fibers (too much roughage for a very raw gut). As crazy as it sounds, organic baby food might help soothe troubles when you eat. I went for 2 yrs on soups and liquid diets and also used a medicated food powder (Metagenics, available on amazon.com) which are all expensive food options, unless you can grow and puree your own food. You need to remember that as long as you have leaky gut, everything you eat is leaking into your bloodstream, so everything will show up on your tests but only some of these foods are real problematic (glutens, grains, sugars). And you are struggling to get nutrients so everything you eat must be of the highest nutritional value. A good nutritionist will help.

4. Find other "intestinal repair" support like Biogenesis IR Complex, drink organic aloe vera juice.

5. Get on both a local and systemic anti fungal. W/ leaky gut in play, you need to skip the natural antifungals. You'll want to share this dosing guide w/ your MD (or maybe skip the MD and have your ND prescribe) and slowly work up to the highest dose of the nystatin powder you can, according to this website:
www.drmyhill.co.uk/wiki/Nystatin_-_how_to_take_it
and then maintain for as long as your prescription lasts. Hit it hard. Your MD won't want to prescribe at these doses but go ahead and increase the dose slowly to 1 teaspoon per day. Once you do, you should have immediate results w/ no side effects (if you do have reactions it is likely die off, as nothing I've ever read indicates side effects from the Nystatin powder, as it is derived from the earth) and you can report that back to her, and beg for more. If you don't get more, you'll have to maintain on the systemic anti fungal until you can get more of the powder, and then titrate back up… I'm skipping over other details so be sure to read my other posts below.

6. And do also start on the systemic anti fungal. Your stool test might indicate if fluconazole or ketoconazole is more effective against the strains you have, or your flora may have changed since your stool test was done. Pick one and try it but note the die off sx, try as much as you can to differentiate them from "side effects" for lyme & co sx/herx. I think this is extremely difficult but kind of important since you're trying to help your MD interpret your reaction to tx as accurately as possible.

7. Your detox w/ leaky gut and y/f overgrowth/tx is now more important than ever. You want to be effective but you also want to go slowly. If you haven't been tested for any DNA mutations that might inhibit methylation/detoxing, you'll want to do this. Let me know or do a search on the forum for "23andme testing" and see my another post below. Whomever you start working w/ on your leaky gut/nutrition issues can also help you figure out how to supplement.

8. Also, when your gut is wrecked, it's very common for your neurotransmitters to be out of balance. If you're experiencing mood imbalances, some of this will be resolved when you knock out the y/f overgrowth. What remains may need support and again, the specialist you're working w/ can do some saliva tests to investigate neurotransmitter levels and how to rebalance.

Another thing to keep in mind is that your digestive system works 24/7. It NEVER gets a minute off. And all throughout the day, it is working and has a different cycle during the night than during the day. In a way, each one of your abx/antimicrobial herbs resets the clock, which is why it is important to stop eating after 7pm, like most nutritionists advise, and for us, to replenish good bacteria before bed, so that overnight it can rebuild itself. So this is also why it's important to take the probiotics EVERY DAY.

OK, I'll stop for now. Please let me know if you have q's… sorry to dump all this on you, but it may be prudent to put your lyme & co tx on hold for a wee bit and get your leaky gut issues addressed and in a good place. Your tx will be more effective in the end.

candida
www.healingwell.com/community/default.aspx?f=30&m=3412983

www.healingwell.com/community/default.aspx?f=30&m=3287783&p=2

leaky gut
www.healingwell.com/community/default.aspx?f=30&m=3294327

23andme
www.healingwell.com/community/default.aspx?f=30&m=3413587&g=3414439#m3414439

p

OK… you added very relevant info.

Since you've already had some experience w/ an ND in addressing leaky gut, yes, I think you can make a lot of progress on your own and skip hiring another specialist. Diet is the most important thing, and you know how to do that and if you were as diligent as you say, for a year. It's extremely difficult to heal entirely, which is why you're having trouble again, and possibly why your immune system was not able to handle the infection and it took a hit with your diet lapse. My gastroenterologist/integrative specialist assures me that some damage CAN be healed. I'm banking my life on that. I think you should, too but it's going to take a lot more time and focus.

Back to your questions:
As I mentioned, with leaky gut everything you eat will eventually leak and might cause autoimmune or other digestive problems. Some foods are worse, than others, of course. So, a rotation diet os good, it's just really hard because there are so foods you can eat. But one constant is what you cannot eat… sugar/simple carbs/processed foods/grains, you know that drill. I left out dairy but dairy is one of the most reactive foods out there. Also, dairy has sugar. Goat milk might be less of an issue for you if you need the dairy.

SIBO is one of those "loose" diagnoses for when MDs don't really know why something is going on, but know what it is affecting. From what I've read, SIBO is common when general GI function is disrupted, your pancreas doesn't signal your stomach to make enough acid, triggering sx that most people and MDs decide are acid reflux problems, when the opposite is really true. So, it's tough to know exactly what your issues were but suffice to say, they may still be there, just much more quiet as long as the GI is not trying to digest problematic foods.

Another possibility for the SIBO sx is the infection itself. I don't know if this anecdote is relevant but in the case it is… I was in/out of urgent care throughout 2013 w/ fungal chronic sinusitis, bronchitis infections. All MDs assumed it was bacterial and pumped me w/ various abx and steroids. Needless to say, I continued to get sicker. I finally figured out it was fungal and got on Diflucan, problems solved. But all these abx courses stirred up the lyme & co infections, which I didn't know I had. Suddenly, very lyme, bart and babs specific sx appeared… when I googled all the groups of sx trying to figure out why I felt I was dying, lyme kept popping up and I found an LLMD and the rest is history.

However, one of those sx that started w/ the abx and steroids (which reduce your immune function, and helped the lyme & co infections take a stronghold in my body), was severe gastric pain and projectile vomiting. Now, 4 yrs prior, I'd been having sever GI problems and had been working w/ an ND to resolve leaky gut/ y/f overgrowth but lots of new problems popped up w/ all the abx and steroids. Later, we finally diagnosed this as bell's palsy of the gut. about 2 months after I started abx IV, my episodes stopped, so I think the infection was causing the severe cramping and projectile vomiting. Here's a good source, I mention it because it's a possibility that some of your SIBO sx might actually be from the infection(s).
www.thehumansideoflyme.net/viewarticle.php?aid=62

From what I've researched, your sx return w/ the sugar/grains/gluten is also likely because once a y/f problem takes hold, you will always have a lingering predisposition to y/f overgrowth. I mentioned this could be due to a genetic imbalance or just due to the strains you have. But you'll need to maintain a careful diet forever.

Also, in my research I've never come across any discussion of leaky gut w/out y/f overgrowth as the culprit (that said, I have not read everything in the world about leaky gut, but I have read a lot!) Y/f that grows unmanaged grows roots into the mucosal lining of the intestine, creating holes through which the fecal matter seeps into the bloodstream… Now, those w/ gluten sensitivities may also be more susceptible to gut damage from gluten but I'm not researched as much about that. So, that and your recent reaction to sugar is why I think you have a y/f problem. I really hope I'm wrong because that is another layer of difficulty in solving leaky gut that you don't want to mess with, but I don't think that's the case.

So back to the steps:
Yes, I think it would be worth it to get an Rx for the pure powder. It won't do any harm and you'll know pretty fast if it's helping. And if it does help, or if you have significant die off first, you'll know it's a y/f issue in the gut. Now, my research shows that if the overgrowth is severe, you'll need to be on the powder for several months. But you can step down to lower doses as time goes on…I think this is a personal experiment. Also, note that in my research, there has been no direct connection made between systemic y/f and athlete's foot or other skin/nail disorders. I think it's circumstantial and that there are some connections in some circumstances. But I do know that nystatin powder won't help your athlete's foot. You'll need a systemic for that.

Regarding your recent diet changes, yes, you could be experiencing die off. Btw, eggs are one of the most reactive foods, which is disappointing since they are so healthy. I'd bet the gas and throat issues is due to starving y/f die off. But it will learn to adapt and find a way to feed on other foods if you don't kill off as much as you can. Now, if you continue the diet restrictions and in 4 wks are still feeling those sx, they might not be die off. Hopefully you'll be on the nystatin by then to rule that out. Alternatively, if what your feeling is like acid reflux, then I think the issue might also be a gastro malfunction or miscommunication between your organs in how to digest food. Again, the Nystatin will help rule out y/f.

Regarding systemic antifungal, yes have your MD write a script for the athlete's foot fungus, since you know you have that. Yes, you'll need a baseline test for liver enzymes.

Homozygoes for MTHFR mutations means your methylation/detox functions at levels around 30 percent of a normal persons, which is not good. Not sure which mutations you have and which your are homo for but there are a lot of mutations so it's tough to know what to advise there w/out more info.

So, regarding showing MD yeast is a true contender, what exactly are you looking for? Have you reviewed the Cynthia Perkins articles? Do you think your MD will want more info?

I won't be able to check back on this forum until later this afternoon… but I will check.

p

I have found something and would like your opinion. In December of 2013 I had a stool test thru Genova diagnostics. They tested for Yeast/fungi and the conclusion was "no clinically significant amounts. This was at the same time I took the food tolerance test. Could this be wrong? Or does this mean I did not have the yeast?

Thanks again.

Sayyadia, thanks for the tips on detox. I definitely need more of that. I thought also that the remaining symptoms could still be Lyme. My Doctor seems to think it is something else. I don't really know what to think! This is really hard. My doctor is still treating me for the Lyme so that is good.

Hi P, I am still waiting on my doctor to see if he will prescribe the powder. I called my local pharmacy and they have it so I can pick it up as soon as I get a script. Wish me luck! I also have another question for you. It does not have to do with Lyme and maybe I should start e-mailing you, if you don't mind.

My 15 year old son had surgery last June. It was a 7 day stay in the hospital and possibly the worst time in my life watching him suffer. They gave him lots of intravenous abx even though he had no infections. He also was given so many drugs that he had to go thru a week of with drawl. It was horrible. After that he ate what he wanted and took lots of IB profin and Tylenol per the doctors. about 4 months after this his stomach started hurting. He hardly eats. He is 6' tall and weighs under 130. He has acid reflux, constant stomach pain, cant sleep, headaches once in a while, gas, loss of apatite and other symptoms I am forgetting. The doctor prescribed a anti depressant which not only did not work, but was hard to get off of and gave him more symptoms. He is off that now and the GI children's hospital doctor has said to try the FODMAP diet which does not restrict sugar. This diet has helped a little but not all the time. I believe this doc also did a blood test for candida that was negative, but from what you say, that is not accurate. Do you think my son has Candida? Also, can I give him the powder with the dosing that you posted?

So just got off of the phone with my sons GI specialist. He will not prescribe the powder or any antifungal. Says that Candida does not exist. Several times he said that. Does not exist. Wow, I am so upset. What a quack! Literally $1,000.00s to see this guy. So frustrated.

I am so frustrated by this, almost in tears. My son has been suffering for so long. This GI doctor has absolutely no problem prescribing him with another anti depressant or antibiotics over the phone, but I ask him to prescribe this powder that doesn't have any down sides and no.

I have not heard back from my doctor regarding the powder for me. Now I am getting nervous that he wont give it to me. I check my e-mail obsessively. I called the office to make sure he reads it before the weekend. Who knows, maybe he wont prescribe it and will want to treat it with herbs.

I will update you.

Any updates on this, Dancingbear?