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Need advise with Japanese Knotweed

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Posted 3/17/2017 2:16 AM (GMT 0)
Hello all,
I have Lyme for 8 years but was diagnosed only last year (I also have CFS because of it). I have huge digestive (bile and acid reflux, but mostly bile reflux) problems , breathing and fatigue problems.
I'm being treated for almost 10 months now with antibiotics and a lot of supplements for CFS and a protocol of samento/banderol/cumanda for lyme ( My Doctor thinks lyme is inactive in my case).
I wanted to add some plant and he recommended me japanese knotweed. I took it for the first time yesterday ( one teaspoon), thinking it was a low dose and I would be fine. I was fine but today I got a lot of reflux again, feeling it messed up a lot with my bile issues that were finally going to be better. I also felt nausea but only for 10 minutes so it's not really my issue.
I wanted to know if some of you experienced those kind of symptoms starting japanese knotweed but then got used to the herb, or if it's just too much for my stomach/digestive issues and have to stop it. I doubt it's an herx, but I really don't want to give up on this herb unless there's no way for my body to handle it sad

Every help is much appreciated!
Regards
David
Posted 3/17/2017 3:01 AM (GMT 0)
David, I think a whole teaspoon was too much to begin with.

Maybe do 1/8 of a teaspoon for a few days, then go to a 1/4 for a few days, then a 1/2 for a few days.

Going up slowly is so much easier on our bodies. It isn't such a shock.

As for the reflux, I have done D-Limonene and had super success with that when I had acid reflux. But, we are all so different and different things work for each one of us.

I am sure you will read of a variety of things you can try.

Good luck and Welcome to HealingWell!!
Posted 3/17/2017 3:24 AM (GMT 0)
David, digestive enzymes have been a lifesaver for me with acid reflux. I digest too slowly, which is where the problem begins. The enzymes really help to break down the food and move it along.
Posted 3/17/2017 4:10 AM (GMT 0)
Hello,

I also have had problems with the JK.
I gived me very painful reactions in the stomach, and bad diarrhea.
It was roots that I had harvested.
Then I bought the plant on a website, and it's ok.

I know that at least 5 peoples have had problems with it. The same kind : grastritis, intestinals problems, etc...
Maybe you should try to buy from another source.
Posted 3/17/2017 4:23 AM (GMT 0)
Hi Dadouv47, welcome to our community!

I suggest next time you take maybe only 5 drops at a time. (1/4 tsp = 25-30 drops) and see how you do.


Did you take it with your meals? If not, maybe take it and eat afterward - see if that helps.
You could split the dose of JK over breakfast/lunch/dinner.


why does your Dr. think the lyme is 'inactive'?

Since you are new here, it would be helpful for you to take a look through the thread at the top of the page title: "New to Lyme?..Start Here!" It's packed full of useful information.
Posted 3/17/2017 3:27 PM (GMT 0)
Hello
Thanks all for you advises and replies ( and welcomes wishes ;) )

I will follow your advises and going to take a lower dose and see how things goes. Hope my stomach will adapt to the JK.

I was also taking the JK 15-20 minutes before eating. Is it ok to take with food ? ( I also take a lot of meds with my meals... )

I'm under treatment for lyme & CFS, with a lot of supplements ( and antibiotics ) against intestinal dysbiosis. My reflux was getting better due to my treatment ( I also take digestive enzymes, but alone they were not enough for my reflux ).

To answer to Girlie, my Doctor thinks I have Post-lyme disease and lyme is inactive because of a clinical diagnosis and seeing my blood test results. He thinks I suffer more from the consequences of lyme disease than the disease itself. However, there's a new blood test that I will do this summer to see if this is correct ( clinical diagnosis can lead to misdiagnosis or medical mistakes). I still think he's partially correct but maybe he doesn't treat me enough for lyme ( even if I have a huge amount of pills and supplements to take for CFS/leaky gut and some herbs for lyme )

Thanks again for your answers!
Regards
David
Posted 3/17/2017 4:42 PM (GMT 0)
You don't need to wait 15-20 minutes before you eat - you can eat right away.

Is it only your gut that you now have problems with?

Any other symptoms?

The Post Lyme disease lable concerns me because that's what Dr's are telling patients when the prescribe a few weeks of abx and the person still has active symptoms and needs more treatment. I know you treated for several months , but if you still have symptoms...
Posted 3/17/2017 4:44 PM (GMT 0)
Were you treated for confections?
Posted 3/17/2017 4:52 PM (GMT 0)
Hi Dadouv!
Welcome to our community! I'm so glad you found us.

I just restarted my treatments with Japanese Knotweed (JK), and started at just ONE drop once a day because I know that I can be very sensitive to things - I'm all the way up to a whole 4 drops twice a day now though! LOL!

I take my meds/supplements/herbs, then sit down to eat nearly right away because I have significant digestive issues myself.

Most of us will start new things at very low doses, watching for any reactions. It can be a herx, or it can be an allergic reaction, but starting at these very low doses allows us to be able to 'clear our system' a lot quicker if we find we have issues. Not many are actually allergic to JK, but it can happen.

My first doses, when I was using only 1 - 3 drops each, my symptoms were increasing - I was herxing. I upped my detoxing efforts and it still continued, so I chose to try upping my dose. It was the dose of 3 drops twice a day that started calming down my symptoms again.

I was very careful to not adjust any of the other things I was doing at this time, and saw that it was just the adjusting of the dose that helped me the most. I am now taking only 4 drops twice a day and have added in another herb at very low doses to continue on with my healing.

These herbs work synergistically with each other - in other words, they work together and are more effective when taken together - so my goal is to get onto the full protocol on low doses, then raise up each item one at a time until I'm up to full doses. A long process, but I've been down the road in doing it quicker, and I ended up in much worse shape, due to herxing and pushing my body too hard.
Posted 3/17/2017 6:24 PM (GMT 0)
Traveler, thanks for you deep explanation. You are right that going slow and only adding one herb at the time is the best way to go ( and to recognise if we herx/ have side effect from it)

Girlie, I understand your concern. Still, my Doctor is very famous worlwide for CFS but has been treated Lyme for only a few years ( since he discovered lyme in most of his CFS patients). He's the one that discovers that I had Lyme after 7 years without diagnosis.He's not an ignorant like most Doctors and try to improves his knowledge about lyme ( he's going to make a presentation at the 2017 ILADS European Conference for Lyme) and is in touch with many famous Lyme Doctors.

He's still not perfect tough and can make mistakes (well, like every Doctor), and the line between active and inactive lyme is very thin ( mostly based on clinical diagnosis if you don't have a very clear active infection ). I still have the impression that his knowledge about herbals protocols is far from perfect, and I hope his new test will be able to really separate those with active and inactive lyme ( and that I have indeed inactive lyme, which I'm not sure yet).

Oh, and we never found any co-infections for me, but with the % of false negative, it's hard to tell. I'm waiting for the new test from finish researchers to do it again (I had suspicion of bartonella because of some rashes and of babesia because of breathing problems, but tests always showed negative).
Posted 3/17/2017 6:28 PM (GMT 0)
A really good LLMD will treat based on symptoms, not tests, so do watch for that. Lyme alone can lower the immune function so that we can not get positive results for the infections that we have - particularly the vector borne infections like Lyme, Bartonella, Babesia, RMSF and others.

So be very careful with anyone telling you that you have inactive Lyme - you will know this by your healing and lack of symptoms better than any test that is out currently. It's hard to evaluate any test that is not yet on the market, as they usually don't release information on just what they are testing and how for us to be able to properly evaluate it to see if it's just the same 'horse in different clothes' or if it's really different.
Posted 3/17/2017 6:39 PM (GMT 0)
So, dadouv47 - you weren't treated for the co-infections?


If that's true - and you still have symptoms - you need to address that. - especially because you had rashes and breathing difficulties.
Posted 3/17/2017 7:06 PM (GMT 0)
I am currently taking 3tbsp JK per day split into two doses (evening & morning) with no negative effects that I can tell from the JK alone. The tincture is 1:3 25% which is (I think) 25% JK 75% ethanol/water mix. Can anyone confirm ?
Posted 3/17/2017 7:17 PM (GMT 0)
Traveler, my LLMD treats me based on symptoms and tests and concludes that I have inactive lyme (even with positive test result for lyme, but Igg/IgM negative and CD57 borderline) so it was clearly a clinical diagnosis based on both symptoms and test results.

I don't know if his new test is trustful. He's using it for a few weeks and just heard about it from other patients.

Girlie, I wasn't being treated directly for any co-infection ( even if banderol and cumanda should have an action on the co-infection as well ).
I showed my rashes to the Doctor and he asked again to test VEGF and bartonella, which came always negative.

I will see this summer how things are going. One option is trying some herbal for co-infections and I will definitely ask to do the new test for lyme/co-infections ( from finish researchers, http://www.tickplex.com/ ).
Don't know what you guys think about this new test that is going to be released in the next weeks but a lot of people are showing a lot of confidence about it. Not sure it will be as good as they say, but coming from patients living in Finland/Sweden, they are pretty confident about it... we will see.

My overall health is still far from good but I had some small improvements since beginning my treatment, and mostly my blood test results are way better ( neurotoxins are finally in range, and a lot of inflammatory markers are now finally good). Still fighting a bit with leaky gut ( not as big as before the treament) and don't know like I already said how much lyme (or any co-infection) is still a problem that needs to be solved.

Despite still struggling with reflux and respiratory problems, Fatigue is still my main symptom and it's not pretty clear whether it's from CFS or from lyme (or both of us). I probably tend to think that it's from both ( and thats why I just added JK to try to boost a bit my current lyme treatment only composed by samento/banderol and cumanda).

Post Edited (dadouv47) : 3/17/2017 1:29:19 PM (GMT-6)

Posted 3/17/2017 7:28 PM (GMT 0)
Just so you know, I was negative on all tests until I had 12 months of treatment, then I came back fully CDC positive for Lyme and RMSF. Negative tests really mean nothing with these infections.

I am NOT arguing that you have active Lyme, as I'm not aware of your exact symptoms (never mind the whole thing about symptom overlap between the infections) - this is only to be sure that you are aware of these things. If you are, then I do wish you the best of luck with all of your treatments, because, at the end of the day, I only want all of us to heal - however that comes about.
Posted 3/17/2017 7:41 PM (GMT 0)
I know, you are totally right. That's not even the point. I'm positive for lyme ( Borrelia burgdorferi Fully Antigen +5 ; Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) +3 and Borrelia burgdorferi LFA-1 negative ). CD57 was 55 and igg/igm came back negative.
Like I said, I don't know if he's right but my Doctor thinks ( based on my symptoms and other test results) that I suffer more from the consequences of lyme disease than lyme itself, which is inactive in my case in HIS opinion. I can't be sure about that and clinical diagnosis often means that mistakes can be made.

That's why I'm glad they are going to release new tests ( some also showing if lyme is active or not and more accurated test for co-infections).

He still gave me Samento/banderol/cumanda protocol for lyme ( and I just added JK) but he's focusing way more on leaky gut/neurotoxins and other CFS issues.

I can't tell by myself if lyme is inactive or not, and the possibility of having any co-infection is far from impossible. I wish it is but it's something that I need to keep looking while continuing my current treatment. I wouldn't have added JK if I didn't think that I need to keep paying attention to lyme (and I will do the same with co-infections) ;)
Posted 3/17/2017 8:00 PM (GMT 0)
Hi Dadouv. Moreover how are you doing with the Cowden herbs? Some people have said that once they finished antibiotics and started these they felt worse. So if JK is the only thing that is making you feel bad at this time, then you could possibly be dealing with the after effects of Lyme.

Also has your doctor tested your TGBF1 and/or C4a? You could also be dealing with some mold/mycotoxin issues. This results in chronic chronic inflammation that is a huge contributor to fatigue. This would need a different plan of action.

Obviously there are viruses that contribute as well so you may want to check for EBV, HHV6, etc, just to name a few. Mycoplasmas can also be part of the picture. Cowden herbs can also help with co-infections. You would need Takuna for EBV.
Posted 3/17/2017 8:01 PM (GMT 0)
It's definitely hard with no clear testing available! Hang in there and keep on moving through your treatments - eventually you will know if Lyme is a real issue for you or not.

I'm really relieved that you aren't taking offense at my suggestions/posts, as I'm only hoping to be sure you understand at least what I do - but I am far from knowing it all - or even enough at times!

Hang in there, keep asking questions of everyone and we will be here to help as much as we can too!
As always, best of luck to you!! I hope it all becomes 'clear' soon for you.
Posted 3/17/2017 8:07 PM (GMT 0)

dadouv47 said...
I know, you are totally right. That's not even the point. I'm positive for lyme ( Borrelia burgdorferi Fully Antigen +5 ; Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) +3 and Borrelia burgdorferi LFA-1 negative ). CD57 was 55 and igg/igm came back negative.
Like I said, I don't know if he's right but my Doctor thinks ( based on my symptoms and other test results) that I suffer more from the consequences of lyme disease than lyme itself, which is inactive in my case in HIS opinion. I can't be sure about that and clinical diagnosis often means that mistakes can be made.

That's why I'm glad they are going to release new tests ( some also showing if lyme is active or not and more accurated test for co-infections).

He still gave me Samento/banderol/cumanda protocol for lyme ( and I just added JK) but he's focusing way more on leaky gut/neurotoxins and other CFS issues.

I can't tell by myself if lyme is inactive or not, and the possibility of having any co-infection is far from impossible. I wish it is but it's something that I need to keep looking while continuing my current treatment. I wouldn't have added JK if I didn't think that I need to keep paying attention to lyme (and I will do the same with co-infections) ;)

just remember that Lyme rarely travels alone. A couple top LLMD's treat all three B's. I'm not saying you do have the co's...but if you can't completely heal...it's worth it to consider.

Especially since you still have the CFS symptoms...(which could be symptoms of lyme and co's)
Posted 3/17/2017 8:22 PM (GMT 0)
Hey Krimpset.
My situation could be a little different because I never went from antibiotics to herbal protocol. I started immediately a full treatment protocol with antibiotics for the gut, supplements and the 3 herbs from the cowden protocol. I reacted pretty well to it. In fact I just add some small herx from Samento, but for the rest I went increasing slowly but I didn't struggle with the herbs.
I don't know why I got those gastric problems yesterday ( probably caused by JK). Maybe I started taking a too high dose for me ( one teaspoon ). I'm planning to take a way lower dose today and see how things goes.

By TGBF1 are you meaning Tgf-BETA1S ? I don't think I have been tested for C4a. But I got all test for mycoplasma, EBV and did a lot of mold test like for candida or aspergillus ( because rhinitis is one of my main symptoms ) and they all came back negative. My doc thinks my rhinitis is the consequence from high Prostagladine E2 ( which was very high, and he didn't find anything related to mold toxicity).


Traveler, don't worry. I'm also very active on CFS and Lyme communities and I read a lot of things to try to understand what I can do and how things works ( and I also give advises) so I won't be offended from your kind suggestions ( and even from disagreements, a healthy debate is often very useful) smile
Posted 3/17/2017 8:26 PM (GMT 0)
Girlie, you are right. That's why if my overall health doesn't improve ( and even if it's improves actually) I will try 1) the new tests for co-infections ( after getting confirmation that they are better than the current ones, and 2) try some specific herbs against bart or babesia to see if I react badly ( which would indicate that I could have a co-infection ).
Posted 3/17/2017 8:31 PM (GMT 0)

dadouv47 said...
Girlie, you are right. That's why if my overall health doesn't improve ( and even if it's improves actually) I will try 1) the new tests for co-infections ( after getting confirmation that they are better than the current ones, and 2) try some specific herbs against bart or babesia to see if I react badly ( which would indicate that I could have a co-infection ).

Glad to hear!


I'm a little peeved because my LLND treated me for lyme only for too long...and we had discussed that Bartonella was most likely my dominant infection.
So, here I am 2 1/2 years treating...could have 'shaved off' 10 months....by starting Bartonella after a few months.

...and after treating bartonella for well over a year...I'm just starting babesia...
Posted 3/17/2017 8:32 PM (GMT 0)

dadouv47 said...
Hey Krimpset.
My situation could be a little different because I never went from antibiotics to herbal protocol. I started immediately a full treatment protocol with antibiotics for the gut, supplements and the 3 herbs from the cowden protocol. I reacted pretty well to it. In fact I just add some small herx from Samento, but for the rest I went increasing slowly but I didn't struggle with the herbs.
I don't know why I got those gastric problems yesterday ( probably caused by JK). Maybe I started taking a too high dose for me ( one teaspoon ). I'm planning to take a way lower dose today and see how things goes.

By TGBF1 are you meaning Tgf-BETA1S ? I don't think I have been tested for C4a. But I got all test for mycoplasma, EBV and did a lot of mold test like for candida or aspergillus ( because rhinitis is one of my main symptoms ) and they all came back negative. My doc thinks my rhinitis is the consequence from high Prostagladine E2 ( which was very high, and he didn't find anything related to mold toxicity).


Traveler, don't worry. I'm also very active on CFS and Lyme communities and I read a lot of things to try to understand what I can do and how things works ( and I also give advises) so I won't be offended from your kind suggestions ( and even from disagreements, a healthy debate is often very useful) smile

That's fantastic! You have ruled quite a bit out. Well couldn't hurt to throw the C4a in if you think it's worth it. But something is provoking your fatigue so it seems that more detective work may be necessary.

Yes, I think JK does mess with the stomach for some people. I just restarted at a higher dose a week ago (about 1/4 tsp, 2-3x a day) and I've been having more gassy/ stomach rumbling symptoms. Never thought about the JK. Hmmm....
Posted 3/17/2017 8:45 PM (GMT 0)
David, I am a huge proponent of healing the gut in order to treat the disease. It is very hard to treat if your gut is not handling the herbs.

My suggestion for the leaky gut is bone broth.

And if you are having acid reflux, I really like the D-limonene.

I think you should focus on getting those well and only doing low doses of herbs so you can then handle more herbs.

Make sense?
Posted 3/17/2017 8:48 PM (GMT 0)
Girlie, I understand. It's all so complicated. Almost a year since I discovered I have lyme and still so many questions and doubts ( and difficulties to get better). Hope research will help us ( and being followed by good doctors).

Krimpet, that's why I came here in the first place : I read some people struggling from the stomach with JK and my bile reflux problems are VERY important and my stomach is very sensitive ( I had an Nissen fundoplication way before I discovered I had CFS/Lyme and of course it was a big mistake and didn't work).
At the same time, I don't want to give up so fast on JK because it's known to be a good herb to ''repair'' and if I really have inactive lyme ( or even active) reparing the damages sounds something very necessary.

Also, are you getting a lot of good effects from Pinella & burbur ? I bought Burbur-pinella because I was afraid that my treatment wasn't enough to diminish my neurotoxins levels but I got the results last week and my QUINO levels are finally in range, so I wonder if I have to start it or not ;)

Thanks to all of you for your kind help smile
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