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Temporary discontinue of treatment even though not better

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Posted 1/3/2016 7:47 PM (GMT 0)
I was wondering if anyone here has been told to temporarily discontinue natural treatment even though they dont feel better? My Naturopathic doctor told me to discontinue treatment for a week to see how I feel but I cant help but feel like it will screw me all up again. I am scared because of what i've already been through.

She suggested i do so because I'm starting to feel worse again. I went through a phase there when I felt great and my neurological symptoms were slowly dissipating and now they seem to be coming back.
Posted 1/3/2016 8:11 PM (GMT 0)
Hi oxomadelineoxo - welcome to our community!

I discontinued treatment once - but due to high liver enzymes...

Would you mind sharing a little more information with us?

How long were you treating before you started to feel well? and how long did you feel better before you started to feel worse?

Did you change anything in your treatment?

As we go through treatment, it's a bumpy road - ups and downs...wondering if it's possible you are herxing...
Have you been doing enough detoxing?
Posted 1/3/2016 8:14 PM (GMT 0)
Hi Oxo!
Welcome to our community! I'm glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html


I'm concerned as to why your doc told you to stop treatments? If you aren't symptom free, then it's not wise at all to discontinue treatments, unless there are problems in tolerating the doses or something like that, but that doesn't sound like what you are dealing with.

Maybe if you fill us in a bit more with your story and what's going on for you now, we can make some suggestions for you.

How long have you been in treatment?

What protocol are you using?

How long have you been on this protocol (if you've used others)?

What all infections do you suspect you may have?

How long have you been infected?

Are you detoxing? What all are you doing to help your body detox?

Ha ha ha! I just realized that Girlie and I posted at almost the same time! I promise we aren't trying to gang up on you!! :-)
Posted 1/3/2016 9:47 PM (GMT 0)
Well I was told to discontinue because of my burning stomach but I don't think that's enough reason to stop treatment.

I've been using nutramedix Samento and Banderol. I started the beginning of August. I felt terrible for about a months and a half then started to feel awesome! I also want to add that in July I started Byron white A-V tincture for my EBV and in the months period where I was taking just that, I felt pretty good. So like end of October beginning of November I started to feel terrible again. I have not changed anything I've done at that point. In the morning I take my thyroid medication, Samento, Banderol, liver tincture(milk thistle, dandelion, burdock, schizsandra). Midday more liver tonic if need be. Evening I take my A-V tincture, Samento, Banderol, multivitamin, active B-12 for MTHFR, vitamin d, selenium, vitamin a, milk of magnesia for magnesium content and constipation, 5-HTP for sleep and depression.

My symptoms are mostly brain related. Like pressure, tightness, eye pain and pressure, loss of vision. I have so many more but these are the most predominant and are so debilitating and painful. Also my anxiety is starting to come back. Extremely weird since I haven't really changed what I'm doing.

I was diagnosed in July and I have no idea how long I've had it. How can you tell how long you've had it?

After reading some threads I suspect at this point I may have bartonella as well as the symptoms seem close to what I feel like.

As for my detoxing, I drink a crap ton of water and sometimes it's hard to gauge how much water I should rink because when I drink a lot I feel terrible, when I don't drink enough I feel terrible and sometimes when I try to get a happy medium I just end up not drinking as much as I think I should I guess. Trying to figure out why I can or cannot drink so much water is mind boggling.

I get my liver enzymes tested frequently and they always are fine. I have no idea why I feel so terrible so far into my treatment after feeling so good. It's quite a let down and I was sure I was on the right track. Now I just feel lost again and I won't be seeing a new doc who's well versed in Lyme until end of February.

I could cry... :'(
Posted 1/3/2016 9:57 PM (GMT 0)
Oh and since I'm feeling worse she thought that stopping it would make me feel better? Kind of counterproductive I think. I haven't stopped it because I don't think it's the right thing to do.
Posted 1/3/2016 9:58 PM (GMT 0)
(((Poor you))))

I know the feeling of being of the verge of tears. I just was a few days ago.

Listen, if all you are doing is drinking water to detox you have to do a little more than that. Do you take any epsom salt baths? That is my favorite.
Posted 1/3/2016 10:02 PM (GMT 0)
Here are some possibilities that I see:
You may need a more diverse treatment for your Lyme (instead of just banderol and samento)

You may have a Bartonella infection (as you have said) that is preventing you from healing from Lyme.

The Bartonella infection may be what's actually driving those symptoms.

You need to do more detoxing because there is essentially a 'back up' of toxins, so your healing has slowed tremendously because of it.

I would definitely encourage you to start including a lot more into your detox routine. We have some really great suggestions in the "New to Lyme?" thread and there are some really good options on this site as well: www.tiredoflyme.com/detox-methods.html

And in an effort to help, what's "a lot" of water for you? I still drink 64 ounces daily and have since 2008 when I became an abx failure for treating these infections.

I just came across this article today and thought it was interesting - especially since there are now doctors telling people that to drink the 8 - 8 ounce glasses of water (just the 64 ounces that I still consume) we have always been told to drink is "way too much".
life.gaiam.com/article/drinking-8-glasses-water-enough
Posted 1/3/2016 10:22 PM (GMT 0)
No I also use the Burbur pinella detox and the liver tincture and it was working great as well as drinking lots of water but now it just doesn't feel that it's working like it used to.

My idea of a lot of water is about a liter. Sometimes a liter and half. A liter and a half tends to be too much for me so the pattern for me generally is a liter a day.

I checked out that site for detox methods and I just don't know what to do. I can't really do Epsom salt baths because my bathtub drain clogs when too much water is used. Would Epsom salt footpaths help? Also I heard tha Alia seltzer good helps but I'm sensitive to carbonation so I'm not sure how well that would work out for me.

I also agree that I should have more treatments but my naturopath has not suggested anything else except for stopping what I'm already doing! Which sounds insane to me! I wont see the new doc until end of February.
Posted 1/3/2016 10:36 PM (GMT 0)
What happens when you drink more water? 1 liter isn't that much when you have the need to flush toxins like we do.

Burbur and Pinella detox and the liver tincture isn't a lot of detoxing either. Yes, Epsom salt foot soaks will still help. I was too overloaded with toxins to tolerate much detoxing at all, so I had to really work hard to build up to where I was doing everything I was doing for detoxing daily - but it really, really helped.

I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so while I was in treatment I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural), oil pulling, taking activated charcoal and keeping the amount of stress in my life at a bare minimum.

Now, I'm just tossing this out there, but maybe you should try Buhner's protocol, or use the full Cowden's protocol? Or you could even switch doctors.....
Posted 1/3/2016 10:42 PM (GMT 0)
When I drink too much water I feel full and sick to my stomach. I've always been an oddball and can't handle things that would normally make people feel better. Also when my bowels move daily, which almost never happens, I feel empty and sick regardless of how much food I eat. I also am super skinny so when my bowels move everyday I quickly lose weight and feel like death.

I will be seeing a new doc in February and I will look into Buhners protocol.
Posted 1/3/2016 10:47 PM (GMT 0)
Okay, I used to do that as well with water. Build up slowly and sip water all day long, don't try to drink down a couple of cups of water in one sitting.

Also, check into the possibility of not having enough stomach acid.

It sounds like your intestines have been hit pretty hard - mine too. It's horrible, I know. I used to be able to loose 10 lbs when I had a bowel movement. You do need to have your bowel move daily though, so keep working towards it. Are you taking magnesium? I have to take the least absorbed form (magnesium oxide) because it pulls the most water into the intestines - or I'm in trouble. We have to remember that our intestines is a major pathway our body uses to get rid of toxins, so is the urinary tract.

Keep asking questions and telling us more about your situation and we can see if we can be of help to get you back on track. :-)
Posted 1/3/2016 11:29 PM (GMT 0)
Yes. I actually take milk of magnesia (magnesium hydroxide). It agrees with my stomach so it's a good option for me. If I take 300 mg of magnesium would Epsom salt baths bring me into a toxic amount?
Posted 1/3/2016 11:40 PM (GMT 0)
While I'm not a doctor, and I have no idea what your body will tolerate, it's not likely. Those of us that live in the US are usually deficient in magnesium simply because our food is deficient. As long as your kidneys are reasonably healthy you should be fine. What I always had trouble with was the action of things like Epsom salt soaks - not the magnesium amount, but I'm much more prone to constipation, so the worst I've had is diarrhea for a couple of days (which was actually a relief to be honest).

The Epsom salt baths can move too many toxins for some people (like me!!) and will overload their detox pathways and create it's own herx. I used to have to stick to Epsom Salt & peroxide foot soaks in order to avoid that.

I still take 1500 mgs of magnesium oxide am and pm and when I was in treatment, I used 2 cups of Epsom salt every day in my foot soak. We are all different, so please proceed with caution, but I do encourage you to give it a try.
Posted 1/4/2016 2:16 AM (GMT 0)
I will definitely give it a try. What does the peroxide do for the soaks? And how much would I use if I were to try it? Just a ball park I'll probably start off with very little of Epsom salts and peroxide to avoid too much at once for the first time for me.
Posted 1/4/2016 4:25 AM (GMT 0)
Back up the thread Traveler gave you two links. Check out the tiredoflyme line for the detox info. Go slowly but definitely do a little detox.
Posted 1/4/2016 4:31 AM (GMT 0)
I built up to 1.5 - 2 cups of Epsom salt and 1/3rd of a 16 oz bottle of peroxide, but starting off with a lower amount and for a shorter amount of time. I usually recommend starting with your feet in the water only 10 minutes to begin with, and to use only "nicely warm" water. You can slowly build up the amount of Epsom salt and peroxide, the water temp and the amount of time spent in the water.

You can read up on them in the "New to Lyme? Start here!" thread that sits at the top of the forum. There are also some really good suggestions for detoxing on this site as well: www.tiredoflyme.com/detox-methods.html
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