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Daisies and Rubies
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/18/2018 7:53 PM (GMT -6)   
Hey HealingWell! I've been a 'silent lurker' on this forum for the past few months, but as I'm in need of some advice, I decided it was time to actually post some questions/concerns I have. I've kind of hit a plateau/fork-in-the-road in terms of Lyme&co treatment :/

FWIW I'm a 22 year old male, currently on a medical leave from University to pursue Lyme treatment.

To make a very, very long story shorter, I was diagnosed this past October ('17) with CDC+ Lyme. I initially presented with pretty mild symptoms: a couple weeks of strange hives, swollen glands, and a 24-hour low-grade fever. However, about a week into starting that good 'ol 21 days of Doxy, all my symptoms emerged and my world got rocked. These symptoms, that I'm still struggling with, are mainly: bladder problems (frequency, pressure in my bladder, problems voiding the bladder. Yes, I've tested neg. for UTIs), fluttery muscle twitches, twitching in my eyelids, loss of libido, inflamed veins and spider veins, lots of inflammation in my hands and feet, and swollen nodules around joints in my fingers and hips.

After my initial 21 days of Doxy, I bounced around with a couple of different ID (I know shakehead ) doctors. The first ID Dr. confirmed my Lyme diagnosis and extended my Doxy script another 5 weeks. The second ID Dr., who was surprisingly Lyme literate, tested me for confections (I came back positive for mycoplasma and bartonella), and began me on a combo of Zithromax/Suprax/Rifampin. This combo. hit me HARD, and I experienced a really intense neurological herx (tons of twitching, head buzzing, panic attacks) that lasted about three weeks. After staying on this combo for about a month, I felt that I was having trouble tolerating both the drugs and the doctor: although this ID doctor was Lyme literate, he was ridiculously hard to reach, and would take weeks to return panicked phone calls from me about my symptoms.

Looking for a more compassionate Lyme-doctor, I finally found my current doctor. He is extremely Lyme-literate, but also quite holistic (trained in herbal medicine and acupuncture as well). Although he normally treats Lyme patients with combo antibiotics, he stopped my antibiotic treatment; he was intrigued by the fact that the vast, vast majority of my symptoms emerged after beginning antibiotic treatment, and was concerned about the possibility of me having developed a Candida infection, indicated by both the prevalence of my urinary symptoms, and a nasty white coating on my tongue.

For the past five weeks, I have been following this last doctor's protocol for me: I'm taking 200mg/daily of Diflucan -- to combat Candida -- and 4.5 mg nightly of LDN, to strengthen my immune system while I'm off antibiotics. He also has me taking a hefty load of supplements, including probiotics, garlic, and olive leaf extract. I have my next appointment on April 19th, about a month from now.

During my next appt., I'll need to decide -- along with my Dr. -- the next chapter in my treatment. I feel so conflicted!; I DEFINITELY still have symptoms, and only treated in total for a little over three months, so the logical Lymie in me says to resume antibiotic treatment with a hopefully strengthened immune system. However, despite over a month of Diflucan and a pretty-strict Candida diet, my tongue is still coated, and if my Candida is contributing more centrally to my urinary symptoms, and will be exacerbated my resuming antibiotic treatment, then that's the last thing I want!

I'm feeling INCREDIBLY frustrated with where to take my treatment. I've taken the past semester off but am 'supposed' to get back into school in the fall, and delaying treatment does not sound like a smart idea...neither does resuming antibiotics, with an apparent Candida infection that could be the possible cause of my urinary issues! I'd be very grateful for any advice, food for thought, etc, from anyone on here about how to handle this hurdle. I really admire this forum and how helpful its been for me and so many others, thank you all so much.

PS I know another option in this whole dilemma would be continue treating Candida while beginning an herbal Lyme protocol, but my parents, who have been extremely generously supporting the costs of my Lyme journey, are overly skeptical of complex or expensive herbal protocols, and are pretty non-alternative health wise. It would take some convincing if that was the route I chose to pursue.

Post Edited (Eitan K.) : 3/18/2018 8:11:04 PM (GMT-6)


astroman
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Date Joined Mar 2014
Total Posts : 4880
   Posted 3/18/2018 8:26 PM (GMT -6)   
Welcome to the club D and R.

I spent two months on Diflican. First month 200mg everyday, second month was every other day.

Remember that Candida isnt the only yeast overgrowth possible. Regular labs have accurate blood testing for this, assuming its past you digestive tract and in your blood (prob is).

Your taking probiotics opposite time of day to the Diflucan, right?

Daisies and Rubies
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/18/2018 8:32 PM (GMT -6)   
astroman -- Thanks! Not the best club I've been in but I'll try to enjoy my stay haha.

Were you taking Diflucan along with abx, or before/after/on a break from abx? Do ya think 5 weeks of daily Diflucan with no improvement on that tongue coating is reason to suspect anti fungal resistance? *I hope not* If my yeast overgrowth were to be caused by a non-Candida yeast, would that indicate needing a different antifungal med?

I've been taking probiotics, along with s. boulardii, morning and night. Only take Diflucan in the morning. Should I switch *all* the probiotics to bedtime then?

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1135
   Posted 3/18/2018 8:46 PM (GMT -6)   
Daisies and Rubies said...
astroman -- Thanks! Not the best club I've been in but I'll try to enjoy my stay haha.

Were you taking Diflucan along with abx, or before/after/on a break from abx? Do ya think 5 weeks of daily Diflucan with no improvement on that tongue coating is reason to suspect anti fungal resistance? *I hope not* If my yeast overgrowth were to be caused by a non-Candida yeast, would that indicate needing a different antifungal med?

I've been taking probiotics, along with s. boulardii, morning and night. Only take Diflucan in the morning. Should I switch *all* the probiotics to bedtime then?


Hi, Daisies and Rubies:

Welcome to the club. And, speaking of clubs, here's a quote from Groucho Marx: I would never want to belong to any club that would have someone like me as a member.

Anyhoo, regarding Sacro-B (Saccharomyces Boulardii), have a look at the following thread and look for the posts by forum member "1000Daisies."

/www.healingwell.com/community/default.aspx?f=30&m=3927224

This is not the only thread in which she discusses it, but it was the first one I found when using the "Search" feature.

Best wishes,
The Dude

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4880
   Posted 3/18/2018 9:26 PM (GMT -6)   
Dude was reading my mind (again). Since Saccharomyces Boulardii is so easy to spell, I can never remember it.ha ha..

I know (SB) didn't agree with me, I wont touch the stuff ever again, whats in us /works/ doesn't work is all different though.

I took Dif both with ABX and on my ABX break. The last time I started actually herxing on it at about the one month mark, it took a full two months for the white tongue to go away. When in doubt, I like the candida blood test, my insurance covers it since its from Quest (did it three times).

Since Dif just goes after yeast, I suppose bacterial probiotics are not affected, I still took them oppose times.

**No cover charge or membership fee for this club**
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1135
   Posted 3/18/2018 9:33 PM (GMT -6)   
We're kindred spirits, astro! wink

Daisies and Rubies
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/18/2018 10:39 PM (GMT -6)   
Thank you both so much for the info..def going to put my s. boulardii bottle back in the drawer for a bit and stop taking it..i've been taking it daily pretty much the entire time i've been treating lyme (~5 months), and I'm shuddering thinking about the fact it could have been contributing to my yeast overgrowth in the first place. ugh!

So I guess I need to treat this yeast a bit more before resuming antibiotics. Starting antibiotics again with a white tongue and GI issues kind of seems like it could be a step backward. This whole thing is such a balancing act.

When I see my doctor next month, I'm going to ask for blood and urine tests to identify any fungus/yeast/bacteria. I'm wondering if I should re-test for Lyme and Bartonella, too, just to see where my bands are since starting treatment -- not that the bands even mean that much. I want to check my CD57 and C6 peptide, too. Based on the results of those tests, I'll know how to more specifically target whatever yeast I'm dealing with, and then hopefully resume antibiotic or herbal treatment for Lyme and co. after that.

Trying to get this all done by the fall is like trying to cram a marathon into a sprint. I'm not expecting to be done with treatment by the fall, but am really hoping to be far enough into treatment that I'm able to resume taking a couple classes, working part-time, etc. My urinary symptoms are the main thing that keeps me from being able to do those things. For so many Lymies, its the pain or fatigue thats the primary debilitating symptom, but for me it all goes back to...pee. Lol.

I know Lyme, Bartonella, and Yeast are all notorious for colonizing in the bladder/urinary tract and causing symptoms like mine (more than most people realize), but any guesses as to which of the three is the *main* culprit in my bladder discomfort??

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1135
   Posted 3/18/2018 11:18 PM (GMT -6)   
Daisies and Rubies,

In a different thread, I directed a forum member to the following video. That other member is dealing with mold, but some of the products in the video might help to you, too.

/youtu.be/UMeqC_UZPe4

You can also go to his YouTube channel and search for other videos on fungus, yeast, etc. Again, I'm not sure if they will help, but they may be worth investigating.

I have no ties, relationship, or affiliation to him, his company, or products. I simply think he posts some interesting stuff.

As for your bladder discomfort, unfortunately, I haven't any ideas. Over the past few years, I go through periods when my urine is occasionally cloudy and then clears-up. Other times, I get a sudden and urgent need to urinate and I have to stop whatever I'm doing and find a bathroom ASAP. Then, after a period of time, that urgency subsides for a while. It's weird. Well, weird is the new normal, I guess.

Good luck,
The Dude

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 3/19/2018 12:13 AM (GMT -6)   
Hi D and R - welcome!


Sorry you have a stubborn Candida infection.

Are you on a Candida diet?

There's a great thread in the "New to Lyme?..Start Here!" thread on yeast/fungal issues, including some non-pharma options to help clear the Candida.

Also wanted to mention that my LLMD prescribes the Saccharomyces Boullardi along with probiotics to be taken daily.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 3/19/2018 12:18:38 AM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/19/2018 8:49 AM (GMT -6)   
Daisies and Rubies,

Hi and welcome to the forum. I will give you my 2 cents worth.

Candida:
I agree to get real lab testing done. I would not rely on a tongue coating as a definitive diagnosis. There could be other things causing a coated tongue. Others mentioned different yeasts like S. boulardii. It could even be from bacteria. Try oil pulling with coconut oil and see if the coating goes away.

Retesting Lyme/Bartonella:
There is no effective way to test treatment efficacy with these infections. Don't bother.

Bladder/UT Culprit:
BARTONELLA. BARTONELLA. and BARTONELLA.

All of the symptoms you listed from both before and after starting treatment scream Bartonella.

Do be aware though that some LLMDS believe babesia needs to be treated before you can get rid of the others, and that people can have asymptomatic babesia. There is even talk that parasites should be treated before the Lyme/co infections, which is somewhat related to babesia, as that one is a parasite. I tried searching for that thread but haven't found it yet. It was from a few days ago.

Post edit: Found the thread. It was right under my nose.
/www.healingwell.com/community/default.aspx?f=30&m=3990758

Post Edited (WalkingbyFaith) : 3/19/2018 8:52:19 AM (GMT-6)


cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 723
   Posted 3/19/2018 10:26 AM (GMT -6)   
If your symptoms get worse with treatment, it probably means you have a detox problem, with maybe some genetic polymorphism such as MTHFR.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2438
   Posted 3/19/2018 10:37 AM (GMT -6)   
Hi! Welcome to the board, but I am sorry you are sick and are here. This board is an amazing resource!

I have posted frequently in the past about my non-candida systemic chronic yeast infection, which took me years to figure out when the doctors failed. My strain is called "saccharomyces cerevisiae", and it is "supposedly" rare/uncommon (but I would argue that it's probably more common than we realize, especially with the overuse/over prescribed s. boulardii nowadays).

I do not tell people to not use s. boulardii. I just want to share what I learned about it. I definitely understand why people use it with abx (to help ward off c-diff). However, I'm at odds with many sites that say it's harmless and does not cause a yeast imbalance (that is not accurate - it can and does cause a yeast imbalance for some). I just wish there was better (more accurate) information out there so people fully understand the pros and cons.

If it were me and I had "visible" yeast problem, then I would ask the doctor to swab your tongue and send it for culture/sensitivity test. You can find out the exact strain of the yeast (maybe it's candida, maybe it's not). You can also find out what medications are effective for your given strain.
It took me too long to get this test done for me, and when I finally did, my strain was not well known enough (not enough data) so they couldn't provide good information for me on medications. A couple of the medications that may be helpful are so toxic that my own doctor won't prescribe to me and recommended I go a herbal route instead. Yikes!

Also, I used diflucan (the generic version), and it did nothing for me. I was on it for weeks. I stopped taking it. It just isn't very effective for me (or my strain). It is commonly used. But just know that just because it doesn't help your yeast, it doesn't mean that you don't have a yeast issue.

Have you tried pure nystatin (powder) yet? If not, I highly recommend trying it. A prior forum moderator (Pirouette) highly recommded this, and she has some great posts about it. I've been on this too.

Wishing you the best!! Any questions, please let me know!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2438
   Posted 3/19/2018 10:39 AM (GMT -6)   
Also, here is a copy/paste on this from a prior thread about yeast in case you find it helpful. Also, I highly recommend reading the links I posted.
Here they are again (also below):

nutritioninstitute.com/probiotics-dont-work-for-candida/
nutritioninstitute.com/why-diflucan-does-not-cure-candida-albicans-and-what-you-should-take-instead/

***************************************


My story is kind of long, so I'll try to summarize it. I believe I've had yeast imbalance for several years now, but it wasn't causing me significant issues. Looking back, I realize that I was positive on paps for numerous years. Unfortunately, I started getting more serious symptoms of kidney pain (and thus sickness), headaches, menstrual migraines, and worsening fatigue. I finally started to putting it all together and figuring out that yeast may be the cause (no doctor ever figured this out). Then, I started pursuing self treatment, and amazingly, nearly all of my symptoms went away or greatly decreased. The kidney pain was my most concerning issue, and no doctor had any clue on what to do about it or what was causing it (all kidney labs came back good, of course). I still battle fatigue for sure, but I believe that's related to adrenal fatigue at this point due to my ongoing years of high stress.

Despite self-treating for many months and my symptoms improving, I STILL tested positive for this strain of yeast. So, I believe I have knocked it back for sure (based on decrease of symptoms), but I don't believe I have completely. It's something I really need to be careful about ongoing.

I understand about MDs not helping you. They just are not knowledgable about what to do with this type of situation, as you and I both have learned the hard way. Have you considered going to a naturopath instead? They tend to be better at these types of things.

My favorite products are probably the following (herbals):
1. Advanced Naturals YeastMax (2part kit)
2. Kyolic Formula 102 Aged Garlic (I started losing weight when I used this one)
3. Pure nystatin powder

I do need to do another cycle of going after this again.

I am a big believer in fixing from the inside out, meaning that we need to control the yeast on the inside/GI. This is where pure nystatin can come in play.

I posted these links on one of the threads mentioned above, but I think these articles make some really good points.
nutritioninstitute.com/probiotics-dont-work-for-candida/
nutritioninstitute.com/why-diflucan-does-not-cure-candida-albicans-and-what-you-should-take-instead/

Be careful on probiotics, which are highly recommended in general. One so-called good probiotic that has gained popularity over recent years is called s. boulardii. As I mentioned in some of those linked threads in previous post, this can actually cause the very specific yeast strain imbalance that we both are battling.

There is a highly recommended product called Syntol, which I tried but stopped. It also contains s. boulardii and should not be used for our strain (could exacerbate the problem). So, probiotics are very iffy for us.

Also, fermented foods/vinegar should not be used or used with extreme caution. This will be contrary to many sites, but I'm starting to find more about how these can also make our strain really flare-up. I know that raw ACV (apple cider vinegar) with the "mother" in it is also recommended for yeast, but from my experience/strain, it completely FLARED my kidney pain for weeks. As soon as I went off of it, the pain went away right away. Definitely not a healing crisis, and I'm confident it was flaring my problem. Careful on those common things that are recommended because they may be more harmful than helpful with our imbalance.

Also, I assume that you have made diet changes too, correct? I did a anti-yeast diet for months (very restrictive at first but then eased up on some of the restrictions). I have to eat no/low sugar nowadays as a life style change to keep mine in check.

Keep the questions coming. Happy to share experiences and brainstorm together.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2438
   Posted 3/19/2018 10:43 AM (GMT -6)   
PS I am impressed with your holistic doctor. smile
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Daisies and Rubies
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/19/2018 12:11 PM (GMT -6)   
So much awesome information here. Thank you all. I'm 100% going to ask for a urine/blood test and tongue swab to try to identify what yeast I'm dealing with (assuming its not just bacteria)...I need to get this yeast under control so I can go back after my Bartonella and Lyme. My doc mentioned that if/when I were to resume antibiotics, the combo would most likely include Azith and Plaquenil, and probably a Bart drug or tincture, too. If I were to have asymptomatic Babesia/parasites, as someone mentioned, would the Plaquenil work for that, as it is technically an anti-malarial drug? (but also an immuno-suppressive drug?? grrr chronic illness is SO confusing).

I'm also going to bring up genetic/detox testing, I agree that its strange that my three+ months of abx treatment was a three-month downward slop from 2 or 3 symptoms to over 20. I know everyone is so different, but I'm seriously seriously praying I'll be able to lower my yeast load and restart treatment within the next couple months.

Daisies and Rubies
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/19/2018 12:12 PM (GMT -6)   
also -- our names are both Daisies-related! What's yours referencing? Mine's a song: https://www.youtube.com/watch?v=3c77HR5L52Y
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