Currently I'm on zithro and herbal drops as prescribed by my LLMD.
I've got massive gut bloating/leaky gut issues.
I've been tested for abx allergies and apparently am not allergic to anything.
However, ceftin and omnicef immediately give me explosive watery diarrhea. Was tested for C. diff and don't have it.
Amoxicillin gives me a rash and itching.
Doxy gives me a rash and itching.
Flagyl causes the herx from hell.
I test with 9 IgM bands positive for Lyme via Igenex. LLMD thinks it's an chronic infection that my immune system has been reacting to in an acute way for many years.
My Bart is primarily neuro Bart. Massive anxiety and tension.
Anyone else in the Lyme/Bart boat re. abx difficulties?
If so, what abx have you found tolerable? Do you take low dose, pulse, etc.?
I don't want to treat this thing with zithro and herbs alone. Too entrenched. Probably many cysts.
Thanks in advance!
Posts: 6 | From California | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- * Diarrhea can be good for a short time - sometimes- it moves out some pretty toxic stuff. Be sure to rehydrate and replace minerals and electrolytes but not with any drink that has additives. A bit of organic lemon juice in water - with a pinch of sea salt is good.
* GUT bloating/leaky gut issues can be liver stress or not enough probiotics.
With LEAKY GUT, I assume you are totally gluten-free as that is vital. You may be getting gluten somewhere so be sure to recheck all your labels.
* The RASHES should be reported to your LLMD. Now. I would discontinue until you talk with your LLMD if there are rashes.
Now, rashes can come from a stressed liver, so it could be that your liver support is not enough - or the dose needs to start slower but a rash can also be a very serious sign so you need to communicate with your LLMD. It may be a typical rash that would ease over time but your LLMD needs to make that call.
I do not trust any allergy test regarding Rx. Anyone can become allergic at any time, even to Rx that worked okay prior. Also, when medicines are combined, things change.
Rx for TBD (tick-borne disease) can bring out the rashes of those infections. Still, your LLMD needs to guide you in this.
* A "HERX from hell" can indicate support measures are not all in place but, sometimes, we just have to deal with it and go from there. Treatment is never easy but it's better than infection untreated.
What are your support methods? Milk Thistle, Magnesium, Fish or Krill Oil, Turmeric? What is the name on the bottle of the "herbal drops"? My guess is that is some sort of liver support but you may need more - or in capsules.
Are you drinking LOTS of water? What is your dose of magnesium? A warm (not hot) bath in Epson Salts helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I take a lot of probiotics and Saccharomyces boulardii daily.
I have been gluten-free for many years, prior to dx.
No current rashes. I tolerate zithro well.
I've been injecting myself with 1 cc magnesium sulfate every day for the last five days. LLMD prescribed it at my request. It seems to be helping with anxiety and energy levels.
I take milk thistle, alpha-lipoic acid, inositol/choline, NAC, fish oil, turmeric, etc.
I have a benign liver cyst, a benign liver granuloma and a benign liver hemangioma, so I'd guess I need more liver support.
Drinking lots of water with lemon juice.
Doing detox baths.
Making sure to get daily exercise. Fortunately I can force myself to do that.
Posts: 6 | From California | Registered: Oct 2010
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posted
The herbal drops are proprietary prescription Lyme/Bart drops as prescribed by my LLMD.
Posts: 6 | From California | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Exercise needs to be non-aerobic. A link below will explain why.
For the magnesium shots, as those can really hurt, if you add B12 to the syringe, it takes 90 % of the sting out of it.
I'm confused about rashes. You said:
"Amoxicillin gives me a rash and itching.
Doxy gives me a rash and itching." (end quote)
So, I assumed you had rashes now. But you say you have no rash now. So, then, are you not taking amoxicillin or doxy now? Or did the rash subside?
Or were you saying that to explain that you cannot take those? (Which is how I now interpret that.)
Sounds like your support methods are good. A LL ND (naturopathic doctor) might be able to further guide you considering the liver issues but some LLMDs are also very educated in such matters - or know a LL ND who may be able to round out your care.
==========================
The reason for non-aerobic exercise and for rest days, is all detailed here with self-care guidelines:
I have known lyme patients whose neuro symptoms explode each time they eat. So, think bart as the cause of this.
The best treatment for bartonella is Levaquin. So, you may want to give that med a try. It worked for me.
Nearly all lyme patients have some meds they can't take. Fortunately, many different meds can do the trick. So, why not study the Burrascano Guidelines, mark all the meds that treat lyme and bart, and then systematically try them until you find the ones you are able to take.
Your doc may be able to give you free samples so that you are not buying full prescription amounts only to find you cannot take the med.
Once you have treated lyme for a while, you will want to take flagyl on and off to get rid of the lyme cysts. It's good that you have no bad reaction to flagyl.
It also may be that when you get your germ load down, you may find that you don't get the rash and itching any longer from the above meds. Our bodies often react with hives, rashes and itching when treating lyme disease because they are overloaded.
When treating lyme, I developed hives to my hormone replacement therapy (estrogen pills) and to many other non-lyme related medications.
My doc followed the Burrascano Guidelines--high dose combinations of antibiotics. But, you may have to start out slower and lower. You can still work your way up to higher doses.
It is now over 5 years since I completed my lyme treatment and I am still symptom free, enjoying my life. I had lyme, babs, and bart. I went undiagnosed for 10 years.
I hear you when you talk about massive anxiety and tension. You may have to take something for that also. I had to. These meds help us make it through.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I also think Bart is a huge contributor to my symptomatology.
I take 10 mg diazepam daily for tension/anxiety. I'm fully functional and can drive a car. It just kind of takes the edge off things. Anxiety/tension worst in the mornings.
I also use bio-identical hormone replacement therapy. Also thyroid replacement.
Lyme/Bart ate my ovaries, uterus, and thyroid. Gave me a benign brain tumor years ago as well.
I keep reading the Burrascano guidelines and at this point am a bit overwhelmed and scared. I'm the strong, self-sustaining type, which got me through years of Lyme/Bart hell undiagnosed. My strength and intelligence got me to figure out my own diagnosis and to find an LLMD. Now, ironically, I'm feeling like a helpless, worn out little kid.
Posts: 6 | From California | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I used to have 1cc mag. sulfate with 1cc of cyano B-12.
See Dr. B's guidelines (in the cardiac thread) as he suggests Methyl B-12 shots.
Walking is always good. As long as you don't overdo it or zoom along too fast, biking can be good, too. It all depends on the pace and how you feel during, afterward and for the next day or two. Just avoid activities that demand "payback" regarding exhaustion.
As for the abx matters, you might ask your LLMD about andrographis, a herb. I can't tolerate abx, either. Doxy did fine for me for a couple months at one time but from then on, 13 silver dollar sizes bulls eye rashes that burned and itched and were so painful that I had to stop.
I tried several times over a year and, each time, the same rashes (8 - 13) in the same places. As they were bullseyes, it seems as if it was borrelia reaction but it was so painful I could not continue.
I have been doing rather well with andrographis (although some people can't tolerate it, it has saved my life). I don't have a LLMD or LL ND to guide me (past a few consults) so I've been mostly on my own for years. I'm far from well and can't do a full protocol from any angle - but just saying that there are some alternatives. Most LLMDs have some knowledge of these.
Stinging Nettle may also be something that can help you better tolerate Rx. Stinging Nettle can help lessen the cytokine reaction.
Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
Includes many articles and books on complementary / integrative methods - & RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Backing up, I see that you said:
"I keep reading the Burrascano guidelines and at this point am a bit overwhelmed and scared." (end quote)
Yes, this can be very daunting. That is why having a good LLMD is so important. If ALL doctors were properly educated, this would not be such a hurdle as you'd have better guidance from all angles.
However, since so much is left to the patient to learn, even just about self-care, it's like being dropped into a graduate program full speed ahead but with a crushing flu.
So, you might want to just read enough to know how to take care of yourself for today - and tomorrow and then turn off your computer. Go for a walk. Use common sense and take this one step at a time.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I tend to be very drug sensitive with paradoxical reactions to a lot of drugs. An antidepressant for instance can throw me into a panic. I can't even take benedrill for a cold as it makes me nervous.
When there is a possibility of a strong reaction you need to always start new drugs slowly with caution.
Levaquin is great against bart but I got tendonitis on it and I have read it can also cause insanity, although rare. I have taken Bactrim DS for close to a year with good results. And I can tolerate most macrolides. Ketek was great against the lyme.
Just try something different if you develop a reaction. Don't give up on drugs as the herbal approach is not as effective.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For those with reactions to drugs, it's good to look over this thread: ---------------
posted
Interesting. I have tested positive for kryptopyrroluria in the past. That was at a time when I had a huge benign brain tumor and didn't know it yet.
Got myself tested for KPU again last year, and no urine kryptopyrroles. Hard to say if any tendency to KPU is causative of antibiotic intolerance in my case, but worth noting.
Posts: 6 | From California | Registered: Oct 2010
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posted
You can be on a ton of probiotics and still have yeast. Be sure you are not eating sugar or white foods like potatoes, pasta, white rice, bread, etc.
(bloating and diarrhea usually point to yeast)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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