Lyme Disease Community
Hi All, Getting a little nervous here...
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Hi All, Getting a little nervous here...

Hello,

I restarted my ABX after a year break I believe on Jan 19, 2013 so I've been on them a little over two months.  I'm taking Ketek and Cipro 2x a day.  I just want to make sure that what I'm experiencing could be a herx and not just a sudden onset of aging or something because I did just turn 51.

I am having such bad morning stiffness.  Arthritis type stuff has not really been a problem for me but I am certainly experiencing aching painful hands/feet/knees/hips...well just about everything  If I start moving around a lot, it does seem to lessen a lot but as soon as I sit or sleep, it all starts up again.  I just am worried that my lyme is getting worse and not better.  My lyme symptoms have been mostly neuro.  I'm sure this is all lyme but I guess I'm just looking for a little reassurance that this is a herx (2 months in on ABX??) and that this is going to GO AWAY!!!???

Also, I have another question and would like opinions.  I fainted and fell about 1.5 years ago.  I broke three of my top front three teeth.  It was a very traumatic experience for me obviously but I ended up having to have two root canals.  These two teeth to this day are still very painful for me.  I've had the root canals redone and still...pain.  I am considering looking into having the teeth extracted and getting implants.  I am very scared and just thinking about going through this makes me want to cry.  I do NOT know what to do.  I'm scared that maybe the implants won't heal if I get them.  My dentist did a terrific job and my teeth look fantastic but I cannot live with them like this for the rest of my life.  Should I wait while going through this lyme healing thing or start looking into this now.

I was doing so well just a few weeks ago and now I just feel like crying.  I'm in quite a bit of pain and everyone is SOOO tired of hearing me complain.  I have decided that I just have to suck it up before I run everyone out of my life.    But when I don't say something, everyone assumes that I feel great.  I look good...I just don't feel good.  This is all so frustrating.

Feeling a little down lately.  And...my tinnitus is flaring up again too.  ugh

16 Comments Post a Comment
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Sorry you're feeling so low.  

About the teeth, have you gotten a second opinion from an entirely different dentist and perhaps an endodontist (specialist in tooth roots and nerves)?  I would definitely do that.  And if you get conflicting opinions, I'd consider a third opinion, just to get more data in.  Doesn't sound right that you are suffering so much.

Whether you are herxing only your doc can say.  It seems different in everyone, mild to severe, and manifesting in different ways.  Can't hurt to call the doc.

I'm wondering as I sit here whether the pain you are having with your teeth is related to Lyme irritation of your nervous system.  It's worth asking your Lyme doc whether that could be, before you get back to your dentist, and/or ask them both.  Data gathering.  Like you feel up to it, huh.  Sorry!

But really, it may be connected somehow, the teeth and the Lyme and the nerves.  Can't hurt to ask, and the docs may not have connected the dots.  
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Hiya,

I am not sure the pain you're getting is a herx.

I wonder if it could be a general accumulation of tocins? Remember you're body is constantlt filing up with antibiotics and also dead bacteria, which need flushing out. According to my doc you need about 6 litres of water a day to flush all that out properly.
But I'd have a talk with yout doctor about this, because obviously you're not feeling beter than before on this treatment and you do need to know why.

As for the teeth, I'd strongly advise against implants.
Borrelia live forming biofilms on any foreign body /alien substance in you. Since your teeth have been root calaned, they are no longer alive adn officially part of you, and so they fit the category of "foreign body" in you. Having implants would only be worse.

Now that a lot of borrelia have accumulated inside your gums, around the roots of your teeth, the only way to make them go (adn so to make the teeth stop hurting) is persisting with antibiotics, cyst busters and something to dissolve biofilms.
If I were you I'd ask your lyme doctor how long he thinks it should take for
you to start noticing improvements here.

I have learned the hard way that it's better to keep pestering the doctor for modifications in your treatment if you don't see positive results.

I hope you start feeling better soon.
pls let us know how you get on!
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I like Youvegot's approach -- checking with the Lyme doc first, so that you have that angle in mind when you see the dentist etc.  Like with any other medical situation, a medical person who doesn't 'believe' in Lyme has a huge blind spot, and if the dentist doesn't show familiarity with the biofilm etc issues, then maybe time for a second opinion.  (Like you don't have anything else to do.)

I'm sorry to hear about all this, on top of 'just' having Lyme.  Take care -- thinking good thoughts for you --
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Thank you.  I'm seeing my LLMD on Friday.  I was thinking back and I did see a Rhuemy before because of a very similar flair in all this pain in my body.  I'm just not feeling well today....at all....

I'll post back after my doc appointment.
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I was doing some research on the internet yesterday and found this implant dentist here locally and he has some interesting stuff on his website about spiroketes.  (sp?).  Also, tips on taking care of your teeth with baking soda and clorox bleach to kill the bacteria.  I am posting a link here in-case anyone else finds this interesting.

http://martinimplants.com/oral-spirochetes.php

I have an appointment with this doctor in a few weeks just for another opinion and starting with the baking soda treatment this morning.  I also bought a waterpik and will start with the clorox dilution tomorrow morning.

I am really not feeling well at all again today.  I'm eating as clean as I can and am juicing in the morning.  I feel like complete doo doo.  Amazing how I was feeling SO GOOD just a few weeks ago.

Anyhow, lt me know what you think about this doctor/dentist.

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Very interesting!  I'm not qualified to know whether they are right, but I like the level of detail they provide, so you can make up your own mind.  How refreshing.

Given how much distress you are in, I think I would give it a try and see what they say and recommend, and then decide, particularly if your current MDs/DDSs are not providing alternatives you are comfortable with.  It's the same way I feel about LLMDs:  they may not be mainstream, but they do know stuff worth knowing -- the only trick is telling the quacks from the visionaries.

Best wishes, and give us an update!  Take care --
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Hi!

I've used the bleach thing. It is great at killing (though see below) spirochetes in your mouth - eg the ones which were causing me terrible receding gums - but it cannot get down to the roots of your teeth, obviously, so I don't see how it could help wiht the accum ulation of them down there. Having said that, they do burrow from your mouth in between teeth and gums, so maybe it works by reducing numbers in your mouth  before they can burrow in.

The main thing about bleach is that it kills everything, including the probiotic bacteria that are SUPPOSED to live in your mouth, when these are eliminated, you get a condition called black tongue  surprise surprise, your tongue goes black. You get a bad taste in your mouth, but frankly it's the sight of your tongue that is realy horrifying. While it goes back to normal (which takes a long time) it goes through a green phase.
As you may have guess, I've had this.
So you canot use bleach for more than 3 days in a row if you want to avoid this.

The other thing about bleach is, there's a film on you tube that whos how well bleach kills of spirochetes in the mouth, but it suggests at the end that it makes most of them turn into cysts rather than actually killing them.
Obviously that will stop them being naughty for a while, but I am not sure if it's really the objective when you're taking abx and aiming to kill them.

I didn't know bicarb would do anything to spirochetes, what I do know it does is give your mouth the right acidity level to help favour the healthy bacteria.
Perhaps using it as well as the bleach would be enough to avoid black tongue?

I'm pouring out info here, I really thing you need a lyme doc to tell you the right way to go on this.

Anyway goo dluck, sorry to hear you're feeling so rotten.
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Avatar_f_tn
Good data.  

Re killing good bacteria along with the bad:  what about taking a probiotic like acidophilus to seed the field after the bleach?  I recall reading somewhere long ago, in connection with what not sure, a recommendation to take a probiotic capsule, open it up, and sprinkle the contents on the tongue, wallow it around in the mouth for x minutes, then swish and swallow, or something like that.  Just a thought.
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Kidding-  When you used the bleach, did you dilute it 20 to 1?  That is what is on the link...20 to 1 you have to dilute it.  

I certainly don't want a black tongue...or a green one!

I don't want dentures or a flipper or a bridge either....these are my front teeth I'm taking about here!  If it were in the back...no problem, take em out.

Anyway, I'm looking forward (albeit scared) to that dentist appointment.  Afraid of what they are going to tell me....
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Oh...another thing I found is that if implant is the option I decide to go with, that using titanium is not the best route because of the metals.  There are ceramic and another type that are better for your health.  Like you said Jackie, it's hard to separate the reality of all this...what realty and perception is....you know what I mean.
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Oh yeah.  Not like being sick is bad enough, it has to be *confusing* too.  Aggh.  Raises the anxiety level, I know, like we need any more of that, huh?

It's good you're doing the research and reading, because that's the way to have control, as much as anyone can.  Let us know how it goes, and what you find out, if you have the time and energy.  Your thoughtful approach to the whole situation is what's called for, so hang on and keep plowing ahead.

You'd been so quiet lately I thought you were probably out having fun, and here you've been going through this!  So sorry.  Sending all good wishes to you and yours -- J.
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I don't know about the teeth, but what you are experiencing with the morning stiffness is exactly what I was having after starting my antibiotics in January.  Just getting out of bed in the morning was a huge chore and I could barely walk.  Bathroom break in the middle of the night?  Lived in fear of that.  I just wanted to tell you that it DOES get better.  Not that I don't still have the arthritis and good days and bad days, but now I am actually at my best in the mornings.  Ibuprofen helped.  A bit of a set back today, but the previous 2 days were the best I've had in a long time.  

Moving around does help - just don't overdo.  This too shall pass.  Sending warm thoughts your way.
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My bleach instructions were:
buy 3% hydrogen peroxide solution mouthwash
Put one table spoon in a small cup of water.
rinse and swish but don't gargle

The probiotics idea that Jackie described is what I was told to do to help it go away. I was actually told to open two capsules in my mouth at bed time, swosh them around with some spit,  and go to sleep with them in my mouth.
I was also told the fastest way to fix it was to find a heroic volunteer to snog with frequently throughout the day, to harvest teh perfect balance of mouth bacteria from a healthy mouth. My husband bravely volunteered and this did fix it much faster than the probiotics.

I've suddenly had a flash of inspiration about the stiffness and aches. I wonder if you're low in glutathione?
Have you ever had that as a supplement?

I think it could be worth trying as it is miraculous stuff if you do need it.
You can order small packs on the Internet, some don't work at all but the cheapest one I can find that really does work is Jarrow.
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Ah HA!  I couldn't remember where I heard about the probiotic-capsule trick to replenish the good bacteria in the mouth ...  It was you!  :)
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Yes  :P
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Sorry you're so miserable. I can relate. I've felt pretty bad the last month. I definitely got worse when we started treating Babesia last November.  I'm as bad now as I was a year ago.  :(   I was happy that I'd escaped with a fairly easy to treat case of Bartonella in the beginning. But now I realize I have a rather nasty, hard to treat case of Babesia.

Anyway, there could be a number of reasons you feel so crummy.  Glutathione is a good suggestion. You might also need more detoxing or antioxidants. You could have a yeast problem. I felt crummy when my kidneys got overloaded.  A metabolic panel (blood tests) might be a good idea to make sure your liver and kidneys are okay.

In the last year when I've feel really crummy its been from side effects of the treatment.  At my latest appointment I got a handful of new supplements, some of which helped ease symptoms.  If your doc doesn't have specific suggestions, then it's a trial and error process.

I have read that Lyme is known to cause dental pain. I saw another Lyme message board post where one person with Lyme and dental pain had to beg for a root canal in a particularly painful tooth that didn't seem to have any other problems. During the root canal, the dentist held up a tangled mass and said he'd never seen anything like it.  (I'll bet it would have tested positive for Borrelia!)

Perhaps the trauma of the broken teeth & the root canals made your nerves more vulnerable to Lyme. Or perhaps it's unrelated.  Sometimes root canals leave the person in chronic pain, probably because something is pressing on an unhappy nerve up there. Be sure to ask how a dentist deals with a tooth in chronic pain after a root canal before deciding on implants.  

I had a root canal on a front tooth after I smashed it on a pool slide in my teens. Six months later, it turned grey and the dentist realized it was completely dead.  Now, on x-rays, I can see a wire in and above this tooth.  Could the wire be poking the nerve?  Or could Lyme have already formed a biofilm on the wire?  If so, would an implant be any different?  Or is re-doing the root canal a possibility?  Just thinking out loud...

What does your LLMD say about it?
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