Topic: Advice/support please: stoppedABX too soon?stopped ABX went to alternative w/success?
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I stopped ABX about 5 weks ago. I was NOT symptom free. As a matter of fact I stopped because I was feeling very toxic. After about a week or so I started feeling better.
Symptoms came and went as usual. Had my monthly cycle and was actually feeling better than that time has been in the recent past while on ABX.
So now, I just startd some Herbals. They are high quality formulas that include many of Buhner's suggested herbs. I am also doing garlic.
I am twitiching like crazy, definite increase in this symptom that had all but gone away.
I am experiencing increased brain fog.
I am experiencing a huge increase in muscle aches.
I am experiencing an increase in hand and foot pain.
I am getting a stiff neck.
My scalp is crawling.
Recently I have also started Diflucan for yeast. I have been on that for 10 days so far.
I am wondering:
Am I having an increase in symptoms because of being off ABX?
Am I having an increase in symptoms because of starting herbs?
Am I having an increase in symptoms because of diflucan and yeast die off?
I feel like I did when I first started to get sick.
One difference I would say is that I feel it all over my body instead of just one side liek it was originally ( has the lyme moved?)
One symptom I had very early on was feeling like I had no circulation in my R big toe ..... like there was a rubberband aboud it...... this is back. This particularly scares me because I don't think that could be yeast .......... but who knows.
So, if ou'd like to venture a guess as to what's going on ......... please do.
If you have actual experience in switching from ABX to herbs and wishing you hadn't, please let me know.
If you have actual experience in switching from ABX to herbs and think it was the best thing you ever did, please let me know.
I am awaiting the arrival of my KMT and a Dan Tracey emem5a at this time.
I need support and ideas.......... LLMD says go back on ABX ..... but she is not alternative oriented ..... so I would expect that.
I am trying to avoid jumping back to ABX out of fear, but I also don't want to be stupid.
Thanks in advance for info, I know this is involved and lengthy........
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Hey Robi
Just venturing a guess, but I would the possibility is you are herxing. I herx severely on Diflucan and it starts after I have been on the diflucan for about a week.
Maybe it is yeast, but then again there are those wo believe that Diflucan kills Lyme. My LLMD leans that direction in regards to my reaction to the Diflucan.
Then if the herbs are intended to kill Lyme, then maybe it is that too. Sounds pretty herxy to me though, that's my ventured guess.
Posts: 1251 | From california | Registered: Apr 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
My opinion - speaking from experience:
Diflucan Herbal concoction Garlic
You are using three powerful products. You have not worked on your heavy metal detox. You are killing everything and the toxins are on a cruise.
My suggestion: Take one only. Finish your Diflucan and work with the trickle-down effects from that. The die-off toxins need to be handled by the body - they are not disappearing into thin air!
When you have mastered Diflucan, followed by colonics for a few weeks and all the other mop-up agents that I have talked about, then you could probably move on to other agents.
Remember that Diflucan addresses fungi and more. All fungi are holding heavy metals (that's the way the body protects us from even worse damage) and these heavy metals are entering into circulation giving you all the symptoms of neurotoxins.
That is not a herx. That is an overload to the body. And the only way is do approach it slowly. Stress, that others call herxes, only sets you back. A little bit of it, yes, that is normal.
After years of abx, your body is already stressed. Go slow - even if it is against your nature...............
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Robi, you've gotten some very good advice from Gigi. Nobody will tell you the alternative journey is all roses. Detoxing the body is hard work.
When you are doing too much detox at once, the body screams in pain and anguish.
Slow....one thing at a time. The lyme bacteria is not going to get the upper hand while you wait for your KMT & rife. Boy, won't they be surprised when you throw that at them.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Robi,
I am strong in the same corner with Pam, GiGi and Jellybelly.
I herx very badly on Diflucan and I never had a problem with it before Lyme. I don't know if it was killing lyme but I do know I have systemic yeast and believe it was killing that.
You obviously don't need to go back on the abx. Sounds like your new protocol is working too well.
You really have to listen to your body and go slowly. I am doing so well on the protocol my current doctor has me on. He is tackling the leaky gut and the systemic yeast problem. First he has me on lots of enzymes, amino acids, herbs to kill parasites. Tomorrow I get my first IV aimed at killing the yeast.
I finally found out what they are giving me and it is Dioxychlor plus a Myer vitamin/mineral cocktail. The Dioxychlor works by oxygenating the blood and killing the yeast which is anarobe (did I spell that right?). When I read this I got sooooo excited because I know Lyme is also anarobe (hates oxygen) and sure enough I found a Townsend Newsletter where Bradford Research Institute actually uses Dioxychlor as part of their method to kill lyme. So now I feel I am hitting all my problems.
Meanwhile, the last 6 days have been nearly painfree. Of course, if the Dioxychlor is really successful, I guess I will be herxing again. ughhhhh!!
I have been doing colonics. 4 so far, 2 to go and while I haven't expelled anything spectacular like I read about, I am having MUCH LESS pain and that could be why. The parasite die off was giving me bad stomach aches which the colonics definitely helped.
Don't despair, but don't suffer needlessly either. Go slow and be glad you are having some reaction as it means your new protocol is having a positive effect.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by robi: I stopped ABX about 5 weks ago.
I am twitiching like crazy
I am experiencing increased brain fog.
I am experiencing a huge increase in muscle aches.
I am experiencing an increase in hand and foot pain.
I am getting a stiff neck.
My scalp is crawling.
I feel like I did when I first started to get sick.
I'm off ABX for 14 weeks. I am only taking a handful of supplements and something for sleep.
I am experiencing all the symptoms I pulled out of your post.
I feel like I did upon diagnosis 13 years ago but with more cognitive issues.
Having said all that. I do know from experience that a systemic fungal infection can mimic any Lyme symptom. Somewhere early on in my treatment, I had to stop ABX and just treat yeast.
I can't really speak to the herbals as the only herb(?) I used while fighting the yeast was pau d'arca tea. (I wasn't on an antifungal at the time.) I made a decoction(sp?) refrigerated it and drank it over 3 days, there was a massive die off.
Maybe the biggest herx I ever had but I came out of it feeling incredibly better. I could clearly see what my couple of months of IV had done for me once the yeast was gone.
I went back to a traditional treatment protocol after getting the fungus under control and responded very well.
So, now that I've neither answer your questions or added anyhting to the discussion; I think I'll go crawl back under my rock.
BTW, the scalp crawling thing is a brand new symptom for me. ^shrugs^
I think the thing to be most cautious about is not trying too many new things at once. (I tend to do that when I'm desperate.) Add stuff slowly so you can see what does what.
I hope you start getting some relief soon.
trueblue
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I am strong in the same corner with Pam, GiGi and Jellybelly.
Me too. I think the keets are indeed going to be in shock when that Rife machine arrives. Continue to tackle the yeast and detox as much as possible.
Have you read Bryan Rosner's book on Lyme and Rife?? He speaks to this issue.
Keep us posted, OK?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I went through two months of a withdrawal phase when I went off of antibiotics. I thought I was going to die. The thing is,w hen one is on antibiotics for so long, they arent detoxing well, even if they think they are.
when you go OFF , theN your body starts to clear all KINDs of stuff.
Hang in there. Alot of people jump back on abx unnecessarily.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Well, I guess I could sum this up as "don't go back to the ABX". I like that idea.
I do think the diflucan is killing yeast ..... though my tounge still has a coat of white. I will stay on the diflucan for 60 days. I will also continue the garlic.
What I may have to change if I don't feel better soon is the herbs. Maybe take a day or two off then if I do restart I will go much slower. I thought starting at 3/4 of the full dose was going slow
Jelly, Gigi, Pam, True, Luvs, LToo and COL ....... One for each of you.
I am so appreciative of your answers. I do tend to alternative, but again I get scared of the disease getting the upper hand. Thanks keeping on the right track.
I have an appointment with a doc in PA that does both ABX and Alternatives ....... not sure of his primary leanings though ...... I hope he likes this plan and has ideas to continue increasing alternatives and only using ABX if absolutely necessary.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
This is a good post. I don't know how many times I've been where you are, but I've gotten scared of losing all the ground I've gained and rushed back on antibiotics. Last weekend, I got scared because the twitches in my back and crawling sensations in my scalp were back and caved in again.
CrimeofLyme, what happened after your 2 months' of withdrawal? Are you now symptom-free?
Why not give your tongue the "Chlorox" treatment? White is bad but better than brown and furry! Dr B told hubby that if your tongue was coated you were swallowing yeast every time you eat and drink.
Instructions in Dr B's 2005 guidelines under managing yeast/Candida.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I stopped abx for about four weeks but began to see some of the very disturbing symptoms return such as increased losing sensation in my legs and head and chin, losing coordination, entire body twitching, throbbing/pulsing in my hands, and well... yes, I again took the wrong exit to get home and began dyslexic speaking, more stuttering.
So...considering that, I began the abx again and am doing better.
I do not regret any of it. I know I needed a break.
I also am doing herbals, and massage work and other things too.
I hope to go off them again soon, but wil not tolerate some of the more severe symptoms that could lead to paralysis or Alzheimers!!
posted
I stopped abx around Christmas time. I was sick of feeling toxic and herxy every day with no let up.
My husband built me an EMEM7 so I Rife about once a week for lyme. I also use the headache, relaxation frequencies which help tremendously when herxing from the Rife.
I need to begin Rifing for EBV, CMV and Clamydia-Pneumonia. I've been told to take it slow so that's what I'm doing.
My husband also set me up with a steam tent with oxygen/ozone to help get toxins out. I lay in it every night for 30 minutes. I believe its helping a lot.
I'll never go back to abx if I can help it. If I ever feel like I need to, it would be short term -- 6 weeks at a time.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey Robi.
Not sure if it is because you are off abx for 5 weeks. Hard to say. Some people don't relaspe so fast-others do. You are on the herbs & ect.. so you could still be herxing from them.
Have you felt better on abx in the past?
When you go to your new doc in Pa maybe you could ask if pulsing the herbs may be a good idea? Did you look into getting a rife machine?
I know some people think herbs as inferior and maybe not as strong as abx. But garlic, herbs, diflucan can all create a die off. A die off is a die off,no matter what you are taking.
BTW When I went off my abx several months ago it took a full month if not more to clear the herx's and stil am fighting a yeast problem/dispite a strict anti-candida diet.
Good luck with your new doc
Take care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
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Member # 5374
posted
Robi,
Time is probably the only way to know for sure what is going on. I stopped most abx because of gut problems.
My Lyme symptoms are now back and some of them, the twitching and myoclonus primarily, are worse. Plus I have tremors that I never had before. But it took months, not weeks, to get to this stage.
I was on Diflucan during this time. I'm back on abx and had major herxes from Flagyl. I'm now adding in Omnicef.
I personally don't feel comfortable with herbal alone for myself. One of my reason's is that it's hard to know the real dose you are getting from store/internet purchased herbal remedies because of how the industry is regulated. If our gov't could only find a good balance between how it regulates drugs and supplements...
If you want to, stick with the herbal route. But keep really good track of your symptoms. You may also want to do lyme tests to see if there are changes. My titer went up after months off the abx.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Concerning the Diflucan (=fluconazole) aspect of the problems, a good friend of mine can offer his two cents:
He is practicing the Sch.-protocol for neuro-borreliosis at Prof. Sch. in W./Germany. The therapy consists of continuous cycles of 2-weeks ABX, followed by 50 days fluconazole and so on.
Even though he feels basicly much better being on fluconazole than on ABX, he experiences Herx-like states in the first 5-7 days of a fluconazole-cycle.
He is trying to minimize these problems by generally taking the fluconazole at night time before sleeping.
Posts: 71 | From germany | Registered: Mar 2006
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bettyg
Unregistered
posted
I've been off my pulsing abx 4 weeks:
was doxy for 3 days; 2 days off; then biaxin for 3 days; 2 days off; then doxy again
My observations:
I'm finally getting some quality sleep for someone who doesn't reach level 4 refreshing sleep! Last night in bed for 8 hours straight plus pee runs without getting up to watch tv or be on here at my ungodly times.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Not to add too much to the mix, but I notice you didn't mention testing and/or treatment for any of the co-infections.
In my experience, some of the symptoms you listed -- the lack of feeling (tight banding), facial numbness, severe brain fog, creepy crawly feelings-- were symptoms of Bartonella.
For me, many of these symptoms came out of the blue.
My LLMD added rifampin to the ceftin I'd been taking, and within three or four months, almost all those symptoms have disappeared completely.
I just saw my LLMD yesterday, and she decided she wants to start cutting back on my abx -- scaling down the mgs for a month jjust to see what happens.
Funny how that particular approach -- scaling down -- had never occurred to this Lyme-brain. I just figured it was abx or nothing.
The other thing I don't remember from your post was whether you'd been taking herbal treatments all along. I think that could make a difference, too, in how your body is reacting.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hey Andie!!
Good for you! Scaling back is the way to go, IMHO. Our mutual LLMD did the same thing with me. We did it so gradually, my body didn't have time to do the rebound thing you see so often here. I've repeated posted about it.
Robi, you still with us luv??
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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I was a very fast relapser when I was really sick with Lyme Disease. I had the experiences you are having when I was relapsing, not herxing.
I have used holistic treatment to get of antibiotics too, but I did it after I was stable, and I used alternatives alongside antibiotics for a long time.
You don't want the disease to get an upper hand. Herbs and nutritional supplements take time to build up in the body to concentrations that are strong enough to deal with Lyme and co-infections.
If they haven't built up enough in your body yet, it gives the Lyme a chance to get an upper hand in the mean time.
If you have to go back to using antibiotics, it is good to take liver support and kidney support and do colonics, saunas, and other detoxifying activities while you are on them to improve how well you tolerate them.
If you are determined to stay off of antibiotics you need to make sure that whatever you are doing is truly potent enough to at least control the Lyme.
Different people have different strains of Lyme and different co-infections. Some people need stronger treatment than others. I suspect you are one of the people who needs the strong treatment, as I did.
I think the symptoms you are talking about are primarily from Lyme and not yeast.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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Scaling back is the way to go, IMHO. Our mutual LLMD did the same thing with me. We did it so gradually, my body didn't have time to do the rebound thing you see so often here. I've repeated posted about it.
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