Herbals make me worse - I feel better without treatment - I am conflicted

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1000Daisies
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Date Joined Apr 2016
Total Posts : 2473
   Posted 2/21/2018 9:36 AM (GMT -6)   
I am very conflicted on how to proceed for myself. I tested positive for lyme, although I'm really not that sick from it. Most of my major symptoms were related to my systemic chronic yeast infection, and when I knocked that back, those symptoms greatly improved. I still deal with the yeast as lower levels now. However, I have chronic fatigue due to ongoing stress that I believe is related to adrenal fatigue, and I have not resolved that yet (I react to the various herbals/supplements used to treat adrenal fatigue and have not found my path yet).

My issue is that I have tried to proactively treat the three Bs - lyme, babesia, bartonella - via herbals. I reacted to some lyme herbals, but after being on them for several months, I saw no improvement. Similiiar with several months of babesia and bartonella herbals.

However, trying to treat the three Bs have CAUSED more issues than resolved issues. HBOT (hard chamber) caused heart problems that I seemingly resolved now. Cytokine remodulators herbals caused a lot of pain in prior injuries that were not bothering me previously (resolved several weeks after stopping the herbals). The herbals for babesia and bartonella caused chronic foot pain (resolved in one foot) and prevented tennis elbow injuries from healing. By stopping those herbals, my foot pain and elbows have much improved (80-90% better). They absolutely would not heal or improve while on the herbals. The only thing that helped was stopping the herbals!

I do have some "new" minor symptoms - probably because I stirred things up with the herbals. They are not severe but certainly a bit concerning to me.

I feel extremely conflicted. I want to proactively treat given our history because I do feel that is important. However, when I do treat, it causes me more issues than I had previously with no overall improvement.

I truly am at a loss.
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.

k07
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Date Joined Sep 2015
Total Posts : 2537
   Posted 2/21/2018 10:39 AM (GMT -6)   
I think just keep your diet healthy, sleep and exercise (maybe a good multi-vitamin). My husband is positive, like you and is just fine. Your immune systems must be better. You're at a point that most of us strive to get to!

If everyone tested for lyme disease I think we would be astonished at the number of positives.

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 670
   Posted 2/21/2018 10:42 AM (GMT -6)   
I agree with k07. Keep your immune system strong and watch your sypmtoms. If they worsen, then consider treating. The herbals can be hard on our organs too, so best to keep your body working on its own if possible.

I was recently reading a book Dr J and his wife wrote in 2004 (I think), and there's a lot of good stuff in there about how to live to beat these diseases.
MTHTR single mutation; Positive Igenix IgG Jan 2017; March/Apr '17: doxy, Tinizadole. 5/1 samento and mino/tini. 5/28- back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. tried LDN; 8/24 rifampin, samento, red root and supps. On and off rifampin. 1/1/18 - 1/20 rifampin. Herbs and vitamins only now.

Psilociraptor
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Date Joined Jul 2016
Total Posts : 1351
   Posted 2/21/2018 12:29 PM (GMT -6)   
New symptoms after stopping treatment is what happens to me. What I find really helps is to start at very low doses. Allow yourself to feel better before increasing the dose. Anytime I started at normal doses I just felt worse with no resolution. But now there's resolution and many things have gotten better. If i stop, they end up worse than before. So I guess I'm just in it for the long haul or until it's gone for good

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2473
   Posted 2/22/2018 10:30 AM (GMT -6)   
K07: If everyone tested for lyme disease I think we would be astonished at the number of positives.
I fully agree.

Kat1000: Which book?

Psilo: Thanks for the comment. I do go slower, and I'd argue that we are often times one of the slowest on this board in regards to herbal dosage. ; )


Thanks for the feedback. I still feel very conflicted about this.
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.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 2/22/2018 12:49 PM (GMT -6)   
Psilociraptor said...
New symptoms after stopping treatment is what happens to me. What I find really helps is to start at very low doses. Allow yourself to feel better before increasing the dose. Anytime I started at normal doses I just felt worse with no resolution. But now there's resolution and many things have gotten better. If i stop, they end up worse than before. So I guess I'm just in it for the long haul or until it's gone for good


I've been experiencing pretty much the same thing. Very early on, when I had my first herx, I stopped all but the knotweed for 3 days. On the third day, I felt almost completely normal for hours. The next day, I started adding back the herbs and quickly started feeling worse again. The second time I tried to take a break - stopping all but knotweed for 3 days, I did not feel almost normal. From that point on, I knew I to keep going. Ever since, I've always kept in mind that I'm now in the middle game. Rob Gitlin used that analogy in an article he wrote, and it just stuck with me. (I previously attributed this quote to Wayne Anderson, who was also in the article.)

When the herxing gets too bad, I drop back on doses a little, but I haven't taken anymore breaks. I was in a really bad bart herx for weeks. I dropped back just a bit on my hardcore herbs and waited it out. Yesterday, I felt better than I had in weeks, maybe months. I got overzealous yesterday and threw in 3 extra doses of bidens formula, as well as sat in the sun and more physical activity. Today I feel rough.

--------------
Quote about the middle game from this article

www.gordonmedical.com/unravelling-complex-chronic-illness/lyme-neurotoxins-and-hormonal-factors/

"Any practitioner can start Lyme treatment, but once you start, you are soon in β€œthe middle game.” That is a place where you need to keep your bearings, or it is easy to get lost."

When treating herbally, we are the practitioner.
-----------
I was not symptom free before treating with herbs. My symptoms progressed and multiplied slowly over a long period of time and then went bonkers after a flu vaccine in 2009, with still waxing/waning symptoms for years until they became constant and disabling after a respiratory infection in 2015. I have to treat. There's no turning back for me.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 2/22/2018 1:48 PM (GMT -6)   
Personally, I wouldn't stop treatment....as it does sound like you are herxing.

I would scale back to very minimal doses...and continue to treat.

If you don't treat, I'd be concerned that down the road you will get worse...and then you'll be dealing with more symptoms.


Psilo said: "What I find really helps is to start at very low doses. Allow yourself to feel better before increasing the dose. "


I think that is good advice.
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

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2473
   Posted 2/22/2018 2:37 PM (GMT -6)   
Girlie said...
Personally, I wouldn't stop treatment....as it does sound like you are herxing.

I would scale back to very minimal doses...and continue to treat.

If you don't treat, I'd be concerned that down the road you will get worse...and then you'll be dealing with more symptoms.


Psilo said: "What I find really helps is to start at very low doses. Allow yourself to feel better before increasing the dose. "


I think that is good advice.


But that's what I did. I go lower and slower than most people here. I stayed on them for many months at low doses. And I don't believe it was herxing - at least, I never got better on them. Some of my symptoms only got better when I went off the herbals completely. I tried for several months. So, it's discouraging. I think something else complicated is going on.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 2/22/2018 2:46 PM (GMT -6)   
1000Daisies said...
Girlie said...
Personally, I wouldn't stop treatment....as it does sound like you are herxing.

I would scale back to very minimal doses...and continue to treat.

If you don't treat, I'd be concerned that down the road you will get worse...and then you'll be dealing with more symptoms.


Psilo said: "What I find really helps is to start at very low doses. Allow yourself to feel better before increasing the dose. "


I think that is good advice.


But that's what I did. I go lower and slower than most people here. I stayed on them for many months at low doses. And I don't believe it was herxing - at least, I never got better on them. Some of my symptoms only got better when I went off the herbals completely. I tried for several months. So, it's discouraging. I think something else complicated is going on.


So then it's side effects from the herbals? Maybe it's just one herb in particular that you were taking?

Have you consulted with one of Buhner's recommended herbalists to see what they say?

But when your symptoms get better...they are still there...just not as bad?
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

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2473
   Posted 2/22/2018 3:26 PM (GMT -6)   
>> So then it's side effects from the herbals? Maybe it's just one herb in particular that you were taking?
In the beginning, I added them so unbelievably slowly - one by one. I reacted to the cytokine remodulators and went off those. So, I really don't believe it's a herbal reaction. I think something atypical is going on with me.

>> Have you consulted with one of Buhner's recommended herbalists to see what they say?
No. But I've wanted to. But somebody recently posted they contacted Buhner's recommended herbalists and couldn't get in anywhere. I think I'd go a different route and see a NP who does Bryon White if I could. But at this point, I'm self-treating instead.
To be honest, treating four of us is really expensive after all these years, and my kids are higher priority than myself.

>> But when your symptoms get better...they are still there...just not as bad?
That depends on the symptoms. When I stopped the cytokine remodulators, it took several weeks but the pain went away. When I stopped the HBOT (hard chamber triggered some heart issues), I believe one of the lyme herbals actually calmed my heart symptoms, and I rarely have symptoms from that anymore (and certainly nothing as severe as it almost stopping symptom).
My elbows and foot pain is about 80-90% better after stopping the herbals. I did not have daily chronic foot pain until I started the herbals. My elbow pain was from an injury, but they would not heal while on herbals. When I went off the herbals, they greatly improved and finally felt like they were healing.

I feel that herbals may be causing inflammation for me, for reasons I don't fully understand.

I don't believe that herxs last months and months with no improvement. I believe those tend to be more flares (IMO). Worsening of symptoms isn't always a herx, and I think it's difficult to always know.


Thanks for brainstorming, Girlie. I appreciate it. smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 2/22/2018 3:48 PM (GMT -6)   
"I don't believe that herxs last months and months with no improvement. I believe those tend to be more flares (IMO). Worsening of symptoms isn't always a herx, and I think it's difficult to always know."


Yes, I think sometimes we attribute our symptom increase to herxing...when it could be a flare/worsening instead.


I have not had regular patterns throughout my treatment....for instance - after a herx, I don't necessarily feel an improvement in any symptoms after.

The symptoms that have resolved - a vast majority have slowly, ever-so-slowly diminished over time.
It's never : herx, and then better.

No patterns is really frustrating for me...i'm constantly second-guessing everything.

I shouldn't complain because I am down to under 10 symptoms (constant ones) plus a few that come and go (like minor twitching for a day here and there for example)

I did have close to 40. You'd think i'd 'feel' much better knocking all those off...but nope...I've got a couple that are my worst...and of course they're still with me. So, I still can't go back to work (symptom flares are unpredictable)....and never know when I wake up how I will fell that day.

I am so DONE with this nonsense. yeah
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

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 262
   Posted 2/22/2018 4:16 PM (GMT -6)   
I really identify with you because my mother is totally intolerant of herbals. They've all had side effects even at small doses. And over time she has become ultra sensitive to everything. The herbalist says to keep pulsing at whatever you tolerate but that's hard when the side effects are worse than the disease.

I just wonder if some people can't tolerate them? I'm not sure how long to keep trying them before we give up and try antibiotics.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 2/22/2018 4:58 PM (GMT -6)   
1000Daisies,

You are one of the kindest and most supportive members of this forum. My heart goes out to you. I wish I could meet you face to face and give you a pep talk, but I'll do my best on here.

It does not surprise me at all that you feel worse on the herbs even after months or that you developed new symptoms after starting herbs. I do not believe you are experiencing adverse or allergic reactions to the herbs. From everything you've said, it clearly looks like bartonella herxing to me. The increased pain in that previously injured elbow - Bartonella. Foot pain - Bartonella. More aches and pains - Bartonella.

"I reacted to the cytokine remodulators and went off those. So, I really don't believe it's a herbal reaction. I think something atypical going on with me."

I don't think it's atypical. I think it's typical. Happened to me. Happened to Aerose. Happened to Szabo. Many people are sensitive to the cytokine remodulators. Those herbs work to ALTER the immune response and make it shift gears. Think of your immune system as the engine in a car that's stuck in the wrong gear. The cytokine remodulators are like the gear shift. If the gear shift is rusty and stuck, trying to shift gears can be rough and bumpy and chug the engine.

I did not wait until I felt nice and comfortable before increasing doses. I slowly increased and added more herbs as I went along usually every few weeks and backed off some on the doses when inflammation got too severe. I've been treating almost 9 months now, and I rarely feel comfortable. Yesterday was the best I've felt in months. Today I'm hurting again. Herxing or feeling worse instead of better - whichever term you want to use - can certainly last for many months. Ask Traveler. Ask RealFoodRebel.

Nobody wants to feel worse, especially not for extended lengths of time, but for some of us it seems to be inevitable when treating. I envy people who take high powered treatments and herx minimally. I wish I was one of them, but I'm not. I'm also not going to risk organ failure or brain damage trying to ramrod it, either. I just keep paying attention to my body and adjusting as necessary without quitting.

Only you can decide whether to treat or not. There will be a cost involved either way. My concern if you don't treat is that something will happen when you least expect it - illness, accident, emotional trauma, etc. - that will be a catalyst to push your immune system off the proverbial cliff. You clearly have signs and symptoms of coinfections that can mess you up at some point.

You have my full support whatever you decide to do.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 2/22/2018 5:11 PM (GMT -6)   
1000Daisies,

I wanted to say, too, that you have been through so much for so long with your kids and have experienced so many things treatment wise that it probably makes it much harder to see clearly, because everything we experience is filtered through that lens of what we already know or perceive to be true.

I'm sure you must be battle weary and really just want a place to rest. That's totally understandable. If you can make a decision that gives you peace mentally and emotionally, then your body will be much more able to tolerate whatever it has to go through. Praying you find peace and the right path for you.

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 670
   Posted 2/23/2018 1:34 PM (GMT -6)   
Here's the book!

Beating Lyme Disease: Using Alternative Medicine and God-Designed Living Hardcover – January, 2004
by David A. Jernigan (Author),β€Ž Sara Koch Jernigan (Author)

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 670
   Posted 2/23/2018 1:40 PM (GMT -6)   
Also, in case you missed it in my other posts, my LLMD recently recommended Biopure Cocktail (Klinghardt) and I've decided to try it. I finished my last (hopefully) antibiox in Jan, and was really tired of the numerous bottles for Buhner.

So now I'm finishing up Buhner and ramping up on Biopure. I read that Klinghardt tried to develop this cocktail that would go inside the biofilm to kill bacteria, rather than breaking the film and letting it into our bodies. I liked that idea. There was someone else on here using Biopure.

Right now I'm dealing with bad feet pain and lower back pain, the two area I've had previous injuries. Since starting Biopure about 5 days ago, I started getting some mild head/neck aches and worse pain in those areas. But today...that was the best my back has felt all year.

So I'm going to keep on with the Biopure and see where that goes.

Lymiemomster
Regular Member


Date Joined Aug 2016
Total Posts : 195
   Posted 2/27/2018 7:15 PM (GMT -6)   
Hi 1000daisies!

You are such a caring and wise mother, I am so sorry to hear this.

What are your current symptoms, from head to toe?
Maybe we can look at it this way, even though you know yourself better, maybe fresh ears may help?
15 yr old son sick no school Oct/15 Dx July/16
Migraines extreme brain fog anxiety/ocd insomnia extreme joint pain neuropathy stomach pain
Aug 3/16 Doxy Zithro BB Bab 2
Oct 5 Zithro and rifampin, Bab 2 anxiety/panic attacks -quit rif
Dec Zithro, Artesunate and finishing Bab 2 Mid Dec add japanese knotweed,gou teng
Feb 2017 80% normal back to school, added houttuynia
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