tongue trouble

[Nell2]

Hi everyone, I love the new look here.

I’ve been doing high-dose pulsing abx for Lyme since the beginning of August. Some hellish herxing, and a few really good days mixed in. So overall I’m hopeful. I’m doing a Babesia cycle now, and OMG my tongue feels like it has fur growing on the back of it, and my taste buds are all crazy — water and milk are unbearably bitter, for example.

It doesn’t seem to be fungal, at least gargling with grapefruit seed extract did nothing. I’m taking 500 mg Flagyl BID Thursdays and Fridays every 3 weeks. I can scrape gunk off my tongue which is grainy and white, like dead cells maybe?

I talked to Dr. J in DC’s PA about this, and she just nodded like it’s quite common, but had no advice.

Anybody got any ideas? It’s a struggle to drink anything, and the fur is driving me nuts.

Thanks for your help!

Nell

[Kim]

Are you taking a hefty dose (more than on the label) of probiotics? If not, you could wind up with one nasty yeast infection that is hard to control.

Take care…..kim

p.s. Have you by any chance been eating pine nuts? I experienced this recently and it is a nasty, bitter, metallic taste that lasts for weeks from eating certain imported pine nuts. It is almost identical to the metallic taste you get with Clindy, but lasts for weeks (mine lasted for 6 weeks 🙄 ) I used to make a lot of pestos, but I’m avoiding all pine nuts for now. Apparently, nuts were being imported from China that were not food grade nuts. If you do a search it’s called “pine mouth”. Yuck!

[Maz]

@Nell2 wrote:

I’ve been doing high-dose pulsing abx for Lyme since the beginning of August. Some hellish herxing, and a few really good days mixed in. So overall I’m hopeful. I’m doing a Babesia cycle now, and OMG my tongue feels like it has fur growing on the back of it, and my taste buds are all crazy — water and milk are unbearably bitter, for example.

It doesn’t seem to be fungal, at least gargling with grapefruit seed extract did nothing. I’m taking 500 mg Flagyl BID Thursdays and Fridays every 3 weeks. I can scrape gunk off my tongue which is grainy and white, like dead cells maybe?

Hi Nell,

If you check out the following link, you’ll find some of the listed oral side-effects of Flagyl that may resonate:

http://www.rxlist.com/flagyl-drug.htm

“Mouth: A sharp, unpleasant metallic taste is not unusual. Furry tongue, glossitis, and stomatitis have occurred; these may be associated with a sudden overgrowth of Candida which may occur during therapy.”

If flagyl is the cause of your mouth issues, you may want to discuss an alternative with Dr. J’s PA. As you’ve been on heavy Lyme protocols for a while now, my best fellow patient guess is that swishing with grapefruit seed extract may not be enough for oral thrush and a prescription med may be needed…perhaps a wash-thru like Nystatin or a systemic, like Diflucan. It used to be that one could buy Gentian violet OTC, but not sure about that today…it also tends to stain the mouth an indigo color!

Flagyl is renowned for these “sudden overgrowths of candida,” so worth investigating further, if you can as it can become quite painful with oral lesions and curd-like white patches in the oral mucosa, tongue and throat.

It’s a bit of a nasty pic, but Wiki has an example of what oral thrush can look like:

http://en.wikipedia.org/wiki/Oral_candidiasis

[Nell2]

Thank you Kim and Maz. I took extra sacc boulardii last night and it’s already better this morning. After reading your posts, I remembered that Dr. J’s PA had told me to take extra probiotics, and I had had a stomach bug with vomiting this week which I guess deranged flora, and it was my birthday and I had some cheesecake my husband made for me.

So duh! It can really be a vicious circle, with illness causing memory trouble which makes figuring anything out so difficult!

My loose plan of allowing something sweet every couple of months, for family birthdays and holidays, is not working out. It’s got to be no sugar EVER.

Thanks so much for your help.

Nell

[nspiker]

Hi Nell,

I just wanted to reemphasize the probiotics. Are you taking ones that contain billions of good bacteria? I just ran out of VSL#3, which is a probiotic with 225 billion. I buy it at Costco, because it is pricey.

Also, do you have a prescription for diflucan? You may want to ask your llmd so that you can have some on hand. I have a prescription that I take “as needed”, for anytime I begin to sense a yeast build-up.

[Nell2]

Wow, I had no idea Costco sold fancy probiotics! 🙂 I’m taking Jarrow sacc boulardii and alternating Healthy Trinity and Klaire’s Pro-5. Another contributor to the yeast is that when I switched to this Babesia schedule, with Mepron and doxy needing to be taking apart, I missed sneaking some probiotics in on drug days. I generally feel so rotten on drug days that I’m afraid sometimes I let stuff slip. I’ll have to do better.

And I’ll call my doc today and ask about an rx antifungal.

Thanks, you guys are terrific.

Nell

[Nell2]

If flagyl is the cause of your mouth issues, you may want to discuss an alternative with Dr. J’s PA

I’m wondering how to distinguish between herxing/die-off and drug effects that are separate from that and should be avoided. Flagyl has made me pretty miserable every time I’ve taken it — I mean curled-up-in-fetal-position-crying miserable. So there might be alternatives that will work as well on the infections without making me so sick?

I wasn’t sure, since I take Flagyl at the end of the two-week cycles, whether it was all the Flagyl that made me so sick or just the accumulation of two weeks of treatment washing me up on the beach like a ragdoll by the end. Are there any specifics on how to sort it out?

[Maz]

@Nell2 wrote:

Flagyl has made me pretty miserable every time I’ve taken it — I mean curled-up-in-fetal-position-crying miserable. So there might be alternatives that will work as well on the infections without making me so sick?

I wasn’t sure, since I take Flagyl at the end of the two-week cycles, whether it was all the Flagyl that made me so sick or just the accumulation of two weeks of treatment washing me up on the beach like a ragdoll by the end. Are there any specifics on how to sort it out?

Hi Nell,

Some folk seem to tolerate Tinidazole better than Flagyl, so I understand.

You’re on quite a combo of abx in various pulses, so very understandable you’re feeling crapped out. 😥

What are you doing in the way of detoxing?

[Nell2]

Hi Maz,

For detox, I’m trying to drink a lot of green tea, which I figured out is drinkable with lemon. I take Epsom baths. I’m taking Deplin. I think that’s it? I did try the lemon/oil drink but it was too soon after the stomach virus; I’ll get back to it though, the taste wasn’t bad at all. Other detox suggestions? I’ve been wanting to get to the sauna, but a little worried that might be more than I can handle.

The first phase, going more after Borellia, was Omnicef, zith, septra. Yeah, that was tough too. Horrible actually. But — a handful of really good days mixed in along the way, of feeling better than in years. I get to have two week vacations after this next cycle so I am thrilled about that!

Nell

[nord]

Many LLMDs are not very knowledgeable about Cpn and the specific issues in dealing with it (including the need for going very slowly in the beginning). I have first hand experience of the ignorance, but thanks to MAZ I was knowledgeable of cpnhelp in advance, and avoided a too harsh start of treatment (given my reaction to a cpn CAP way of start, the head on start with high doses of Doxycycline, Rifampin, Metronidazole, Hydroxychloroquine… I don’t want to think of it).
As you have Cpn reading the Cpnhelp handbook if you haven’t seems like a good idea. The protocols there have been designed with a lot of consideration of negative effects of threatment, and perhaps more importantly to you, how to handle them. http://cpnhelp.org/cpnbook The site can be a bit overwhelming at first, and starting with the “getting started” pages is a good introduction http://cpnhelp.org/cpn_and_cap_overview

As MAZ wrote, most feel worse on Metronidazole than Tinidazole: (more) metallic taste, more mood issues, more gut issues. Lots of discussions on cpnhelp on it. Several report feeling very badly on it, and considerable improvement after switching to Tini (I recall Sarah among others). I have only taken small doses of tinidazole yet (will try metro later as some say it has better effect, and perhaps some of the negative effects are actually from a higher effect, I think it has been speculated).

There is a lot the you can (need to) do in terms of countering the effects of the abx treatment. A little sample of pages from the handbook:

http://cpnhelp.org/reactionstoCAPs
Good overview:
http://cpnhelp.org/five_ways_of_feeling_lous
Secondary porphyria, neccessay knowledge when hitting Cpn, as specific to it (see subpages in the menu on the left):
http://cpnhelp.org/secondaryporphyria
Supplements (see subpages in the menu on the left):
http://cpnhelp.org/supplementscentral

Candida if that is part of your problem:
http://cpnhelp.org/candida

Have you tried olive oil? Has some antifungal properties. Take lots of prebiotics with the probiotics, so they survive 😉

Getting the hang of it, doing the right thing during the darker periods has tremendeous pay-off, I’ve already learnt with the first very small bumps on my journey.

Are you cycling Doxycycline and Azithromycine? That possibly a worse trip everytime you need to get off and on it if you still have Cpn infection. They actually help with the aftermath of Flagyl (according to the designers of the cpn CAPs).

Good luck!

Edited for conformity to roadback guidelines

[Nell2]

I talked to the nurse at Dr. J’s. He said they do not want to do Nystatin or Diflucan unless nothing else works, because those will kill the probiotics too and their experience says more probiotics is a better solution for almost everyone. So — up to 4 caps of sacc. boulardii twice a day. Not really open to talking about a switch from Flagyl to tini until the yeast issue is resolved.

About the Cpn. When I was attempting to self-treat, I got the TARCI test done and was positive for mycoplasma and Cpn. I managed to get an rx for doxy, and took 50 mgs BID MWF for about a year and a half. I felt no change for months, but at about the 6 month mark, I started to feel immensely better. I had two months of feeling about 95% normal — plenty of energy, great mood, no joint pain — but then I went off doxy to have a GI panel done, and quickly sank back to illness. Went right back on it but never got the good bounce again.

Next I tried the herbal route, with Samento and Cumanda. They did suppress a variety of symptoms but I was getting sicker. Fatigue worsening, life becoming more and more limited. At this point I decided that despite my distrust of doctors (long story about my formerly autistic son) I was going to have to find an LLMD and do what he says.

What the PA said when I asked about the Cpn is that my test results show an immune system that is deranged and out of control. I also tested positive for HHV 6 and HSV (both IgM), and she said that she didn’t trust those results as actual infections but rather an indication that my immune system was running around disorganized and not fighting where it need to be fighting. She said that getting my immune system organized and on task was part of what we are working towards. And that the protocol of pulsing and changing up and cycling is designed to train the immune system to do that.

So far I’m cycling doxy but have been on zith the whole time, for 4 months, pulsing with holiday weeks.

[nspiker]

Nell wrote:

At this point I decided that despite my distrust of doctors (long story about my formerly autistic son) I was going to have to find an LLMD and do what he says.

I would love to hear your story about your “formerly” autistic son. There seems to be so many correlations between lyme, heavy metals, vaccines, and all the stuff that most of us are dealing with a suppressed immune system….and autism. With one in a hundred kids, it’s an epidemic!

nancy

[Maz]

@Nell2 wrote:

At this point I decided that despite my distrust of doctors (long story about my formerly autistic son)…

Nel, I’m sure you must have some hum-dingers to tell…this might make you grin. I took my youngest for her pre-college medical in the summer. I’ve known her ped for years and we are like old friends, but I hadn’t seen her since I became ill with RA/Lyme. She asked how I was doing and I shared my treatment choice. She (as they do) looked dismayed and, being a gastroenterologist by specialty, she said, “You do realize you could get C. Diff.” I said, yes, but I had been on antibiotic therapy for 3.5 years successfully by using high dose probiotics to off-set this potential and had not had one bout of diarrhea. She looked amazed at me and then said, “You’re not going to that doctor in “…” who has a court case against him, are you?” I said, no, that he was a ped doc and, in any case, I felt their case against him was ridiculous as the guy had healed thousands of kids from chronic Lyme and ‘they’ were just looking for any minor slip-up to get him. The, she said, “Well, you know methotrexate isn’t a bad drug and people tolerate it very well.” I just said that I believed I had a chronic set of infections and it didn’t make sense to treat with a chemotherapeutic agent that would just mask symptoms. She then said out of the blue, “Well, you know doctors don’t know everything…we do our best, but sometimes strange things happen. I had an autistic patient this past summer who we could do nothing for….then I gave him antibiotics for an acute infection and his autism just disappeared!”

Well, what d’ya know! Hmmm…and there’s no correlation there, d’ya think??? 😆
The crazy thing is that doctors are making these connections every day…they see patients take abx for some other infection, improve with their rheumatic (or other disease) and then just think it’s spontaneous remission…a fluke. 😯

Anyhoo, thought you might enjoy that little story, Nell, though I’m sure you’ve been through the wringer and have seen it all by now.

Do hope your tongue feels better soon!

[Nell2]

Love that story, Maz. When I had a colonoscopy this summer, the gastroenterologist was baffled by the fact that I felt SO much better after the clean-out the night before. She said, “yes, other patients have said the same thing,” with a shrug. I wanted to get my latest GI panel results that listed all the gut infections I’ve got and wave that in her face — but she’d already dismissed that test as not being “meaningful”.

Then after the colonoscopy when I was offered Coke, I was just laughing dark laughter. They give Cokes to all these people with gut diseases? What a world!

Nancy, I’ll tell the story of my no-longer-autistic son in a separate post when I get the energy to write it out. Yes I totally agree with you about all this stuff being connected.

And thanks to all of you for helping with my tongue problem. The big increase in probiotics is making a big difference.

Nell

[Maz]

@Nell2 wrote:

When I had a colonoscopy this summer, the gastroenterologist was baffled by the fact that I felt SO much better after the clean-out the night before. She said, “yes, other patients have said the same thing,” with a shrug. I wanted to get my latest GI panel results that listed all the gut infections I’ve got and wave that in her face — but she’d already dismissed that test as not being “meaningful”.

Nell, glad your tongue is feeling better! 🙂 Had to laugh about the coke!

Your story about the colonoscopy makes absolute sense! When I have done liver flushes that entail fasting and colon cleansing prior to flush day, the days following are fantastic…any trace of inflam gone.

A number of people here have also commented that whenever they’ve had a stomach bug, their rheumatic symptoms disappear. I think maybe in those cases, the immune system is just hijacked temporarily, though.

[Author]

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