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» LymeNet Flash » Questions and Discussion » Medical Questions » its complicated & I need been-there advice

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Author Topic: its complicated & I need been-there advice
sometimesdilly
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What now?

As briefly as i can say it:

I've had to undergo endoscopy twice in the past 6 weeks. Turns out I have Barretts, which means that my esophagus is trashed enough from acid reflux that it is now pre-cancerous.

My new-ish Lyme doc I first saw last fall wanted me to go on an regime that did not include antibiotics. Given the esophagus problems, which reached a critical state shortly after I saw the doc, the advice was, don't take anything else until the scopes are done.

This Lyme doc doesn't think that my Lyme can explain the severity of my acid reflux and, given everything, I have no doubt that when the doc sees my scope results he'll either re-suggest herbs, or tell me to do nothing at all for the time being.

Meanwhile, I have a new primary care doc who believes I have Lyme, who is exceptionally willing to prescribe long-term antibiotics, and who is literally waiting for me to ask for them.

I haven't been in treatment for longer now than I can remember. My overall health is declining significantly and rapidly. Major systems are going down.

I'm taking forever to get to the question, but here it is. I know none of us, including me, are docs or medical experts, but given how rapidly and systemically I'm deteriorating, does it make any kind of sense not to reach for the heaviest duty antibioitics a doc is willing to give me??

I'm genuinely afraid that I am very near a point of no return.. that I am getting so lost and so ill that i no longer will be able to make decisions that make sense.

(PS- one of the worst developments here is that my anchor, my husband, is now so ill himself that he can no longer provide any kind of support.

help.

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luckylymie
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Have you researched the Doug Coil machine?
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BoxerMom
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Take the antibiotics from the doc who is willing to prescribe them.

Maybe you can stuff some down the hubby, as well.

And do not lose hope. Ever. At the very least you can prevent further decline. And you may regain some significant ground with your health.

I assume you are on an acid-blocking medication? Ironically, this could make you less tolerant of oral antibiotics, as the abx create an alkaline environment in the stomach, which can further aggravate acid reflux.

Most of us have reflux from the combination of infection, abx, and too little stomach acid.

If you can manage to stabilize your stomach on abx and acid-blockers, you may want to ease into HCL supplements. I can't tell you the number of people I know who have cured their reflux by replacing necessary HCL.

But start with the abx and wait until you feel you are tolerating them well.

And consider adding herbs that soothe the mucosal layer of the stomach: marshmallow, slippery elm, plantain, DGL. I think Keebler has a product she likes.

--------------------
 - Must...find...BRAIN!!!

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sometimesdilly
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Lucky- thanks, but what I'm asking about is antibiotics in this situation.

Boxer-

Thanks for the imput. I've read Keebler's posts on esophogus-kind products; DGL was high on her list, as it is on my Lyme doc's as well.

Yep, i'm understanding that the taking of abx while on Nexium (which I MUST take) is a big problem.. a catch -22.

I don't think my choice is to treat Lyme and face cancer, but I'm not sure about that. It seems like not treating Lyme is bringing on conditions that are even more hairy, but I'm not sure about that either anymore. That's what being lost means.

I used to climb on a soapbox and rant about Lyme docs and Lyme treatment, and these things have always genuinely mattered, but now... now it hits all the way home what the consequences are of falling between the cracks when it comes to medical opinion & treatment.

I'm the only coordinator of my care, and trust me, that is a sad state of affairs, given my brain right now.

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BoxerMom
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I understand and sympathize. I would take the antibiotics.

--------------------
 - Must...find...BRAIN!!!

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sometimesdilly
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up
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sixgoofykids
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Dilly, have you checked to be sure it's too much acid and not too little acid? Severe acid reflux can be from either too much OR too little!

I was diagnosed with reflux and put on Prilosec. Thing is, I have too little acid and the doctor never checked for that. Now that I'm off the Prilosec (which I only took with abx) and supplementing HCL, my reflux is so much better. I also had a pharmacist tell me that the abx can damage the part of your stomach that makes the HCL, so that having been on abx long term and now needing HCL supps made sense to her.

http://www.drdebe.com/stomach-acid-assessment.html

Lyme-wise, if you're feeling that bad, I would think it's a bad time to back off. You're in a situation of, which is the lesser of two evils? Is it better to take the abx and risk further damage and possibly cancer? Or is it better to work on the reflux and have the Lyme get worse. Bad decision to have to make. I'm sorry you're in this spot to have to make it.

--------------------
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nefferdun
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Irritation of the vegas nerve can cause acid reflex.

I had such a severe bout of it I went to the ER and they jumped to the conclusion I was having a heart attack. Turns out the two drugs I am taking cause indigestion and I had been eating a lot of nuts that afternoon. So much for that 10K mistake!

Apple cider vinegar (with the mother - like Braggs) is very good for acid reflux as well as many other things. Try putting a teaspoon in water a few times a day - or on your salads and cooked vegetables. I have had no more problems with acid reflux at all. When I was taking doxy, which caused such bad acid reflux my throat was burned, it was a life saver.

Yes I would go back on abx. Just make sure you eat when you take your meds and don't lie down for at least an hour afterwards.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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17hens
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Dilly,

My 14 year old daughter has Bartonella, GERD, Barrett's and little bit 'o lyme thrown in to stir the pot.

The combos that helped her were Rifampin & Zith, and Bactrim & Biaxin.

She's now off abx as we're working on liver/kidney health (wish we had done that all along) but the RN we're working on for that is putting her on various Standard Process products.

SP's Gastrex is to heal the lining of the esophagus, stomach, etc (including Barrett's).

Also SP's Zypan is needed as a digestive enzyme.

DD is still on 40mg protonix in am and 40mg in pm to quiet the acid but we're hoping she'll soon be weaned off.

I totally agree with BoxerMom. Get help from your PC. If you have Bart, so does your hubby, so get the PC to help him too.

Neither Barrett's nor lyme are death sentences. Both can be defeated! Don't give up!!

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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MichaelTampa
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Regarding the acid reflux, you might consider taking a product like Xymogen's GlutAloeMine. I have used to help heal my esophagus from acid reflux. It has DGL in it, but other things as well. Keebler warns the glutamine can cause seizures for some with those issues, so there is that.

Sounds like without the abx you're not going to change your direction soon enough! Only thing is, be careful about how much. When I've added abx, it sometimes causes "herx"-like symptoms, of more reflux and pain in the esophagus area for a couple weeks.

Your situation is a strong case for getting to a practitioner that can muscle test or energy test for which abx to start with, how much your body can handle right now, as well as other products such as GlutAloeMine that are potentially very helpful. I don't know if you're open to that, but do strongly encourage you to find someone in your area that can do that for you.

It's a little tricky with the abx, as you'd need to get the Rx filled for the abx before being tested for it. I've done this before, and it helps sometimes when the doc has a sample from the manufacturer, because that's enough to do the test.

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map1131
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dilly, I was thinking bart as I was reading and then 17hens chimed in with her daughter.

I would be frightened of that strong regimen of many abx? But I would be scarred to death about cancerous cells also.

My husband has Barrett's also. Yes, he's been tick bite. Couple times with abx immediately. I've been suspicious of him having some TBI for many years now.

His heartburn, gerd increased and I insisted on an endoscopy with a scheduled colonoscopy (cancer family). TG I did.

With meds from gastro his esophagus looked much better in one year. Still has damage but not progressing.

I treat myself with rife for bart & lyme and he's in the room with me. I think of it as two birds, one stone.

We can't know how to treat you. But hearing our experiences might help you decide what you feel best with.

FYI, I've tried using rifampin for bart after being abx free for years. Rifampin alone kicked my rear. 3mths on and I felt better. Within a few weeks bart was up to his usual mean form.

I've decided I'm just going to fight him with rife. But I could decide next week to fight the rifampin again. Never say never again.

I wish you peace and strength so you can make a decision.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Tincup
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So sorry to hear this Dilly.

My suggestion would be... since I know a little about your past treatments...

Start slow!

A little doxy could (by now- having not been on antibiotics) produce a big toxin overload that will kick you down further.

Remember... don't pop more than you can mop.

Once you return to a more "stable" situation, then you can re-evaluate and increase the dose, IF needed.

I am also concerned because yeast can produce many of the things you've mentioned.

You on Nystatin? Not diflucan or other yeast stuff, but LIQUID nystatin?

Feel free to holler if you need anything... ok?

--------------------
www.TreatTheBite.com
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sammy
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Dilly, would your PCP consider ordering IV antibiotics to avoid GI absorption and reflux complications? I know it's drastic but you could do a few months IV while you work on healing your esophagus.
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Robin123
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Dilly, your mailbox is full - would like to send you a message -
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momofthree
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I agree with sammy. Why not do IV?
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nenet
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I had really bad acid reflux/GERD too. If you haven't yet done a full-on elimination diet yet, I would HIGHLY recommend doing so. My worst offenders for worsening or triggering reflux were dairy, nightshades, and gluten.

The importance of removing possible food intolerance from the equation can't be overstated, and it has no side effects, other than having to learn some new recipes for a while.


Secondly, I have a Stomach/GI tea recipe that helped to heal my reflux/GERD and stomach ulcer over time, along with the elimination of offending foods (and along with proper antibio treatment for Lyme). I would be glad to share this recipe w/you - it's a few mild herbs that also help to detox Lyme.


Thirdly, if you can at all manage it, IV Rocephin or similar would be the obvious choice in your situation - maybe with your new diagnosis that would corner your insurance to cover IV antibiotics. Don't forget to consider Gall bladder support meds while on Rocephin. I have heard of Acti-Gall, and another one I can't recall the name of right now.


I really can empathize with you, as I got to a point a couple years ago where I was throwing up in my mouth daily, and had heart palpiations every day which were being exacerbated by the reflux. The pain in my esophagus was intense. In fact, the scarring has left my esophageal sphincter pretty useless, and I have to be careful not to lean over after eating for a while.

OH, and lastly, if you have to go the oral antibio route, Ceftin was very tolerable for me even during the worst of my reflux, while Doxy and even Doryx seem to only exacerbate it, so you might want to look into which antibios are easier on the stomach.


P.S. Please PM me for the tea recipe if you are interested. Good luck to you!

--------------------
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Lymenet Success Stories

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"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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nenet
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Also, I don't know if you're on it or not, but Olive Leaf Extract (and many other supps and herbs) can also trigger reflux. I was doing very well for 2 years until I started OLE a few weeks ago.

Since adding OLE, I have had to cut down on my dosage and drink more of my tea at times, as well as take Bragg's Apple Cider Vinegar solution, as was mentioned by someone else in this thread.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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Razzle
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I was having bad reflux and then found out I was sulfite-sensitive. Getting rid of sulfites from my diet (anything with sulfite on the label, and lots of unlabeled sulfites - found in dried fruit, salad dressings, vinegar, all corn derivatives like corn syrup etc., tortillas, instant potatoes, many packaged foods, grapes, wine, tomato skins, etc.) stopped the reflux and now I only get reflux if I eat too much sulfites.

Take care,

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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sometimesdilly
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sorry to have gone missing and not replied- my computer monitor had an abrupt and untimely death.

i need to read through what you each have written and think about it, but until tomorrow- - thanks to each of you for taking the time to try to help.

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Lymetoo
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Be careful with the abx, dilly! I had to take abx this past week for a bladder infection and now my acid reflux is AWFUL! I'm on Nexium too and there is no way I can get off that I know of.

My acid reflux began during Lyme treatment and has continued.

It really is a Catch-22. I would suggest rifing also...

Hugs and love and HOPE that you can figure out what to do!

--------------------
--Lymetutu--
Opinions, not medical advice!

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sometimesdilly
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Ok, working backwards..

Toots- I hear you (and feel for you). It makes total sense to me that Lyme/Lyme treatment caused my acid reflux, but actually, my Lyme doc doesn't think so.

Says that the severity of the reflux suggests to him that while Lyme etc. may have contributed to it, or set the stage for it, the reflux is too significant to be attributed to just that.

What is causing the reflux seems to me to be central to what I do next. If Lyme is not causing the reflux, then abx won't help with that, and might make cause serious harm because of the Baretts.

Razzle- I'm glad that your reflux was resolved by eliminating sulfites. I'm sure that anything other than an extremely healthy diet can complicate our recovery.

That said, my Lyme doc had me tested for a huge array of food allergies and intolerances,, of which I have none. (guess that's both good and bad news).

Nenet- sounds like you have experienced the full hell of reflux, and then some!

Thanks for the heads up about supplements possibly aggravating reflux. I have 100% confidence that my Lyme doc knows about which to take and which to avoid (supplements are one of his specialities), and I'll be sure to talk to him about this. I'd love to get your tea recipie, if you are ok with PM'ing me with it.

Sammy and Mom of 3-- As for IV's. That isn't happening anytime soon. My PCP wouldn't dream of putting me on them. She's willing and able to practice Lyme 101 medicine (thank God for that), but has no experience beyond very basic oral abx. Since my Lyme doc is out of state, can't do IV's with that doc either.

The basic decision really is going on oral abx or not.

Robin- sorry about my mailbox. just cleaned it out.

TinTin- thanks for the suggestions and offer. Do I understand you right that you think abx (small doses) to go after the lyme trumps concern about abx worsening the Baretts?

I agree with you about yeast. Even if it isn't the main culprit I'd wager it is a factor right now. I don't have liquid Nystatin at the moment, but will in the very near future.

Pam- glad that your hubby improved with gastro meds. Does that mean Nexium or something else?

Bart is a bad bully, and yep, one of my fights for sure. Can't even think about co-infections right now, though.

I'm just trying to figure out how to reduce my Lyme bacterial load without worsening the Barretts, to get to a place where I can do aggressive Lyme and co's treatment again.

Hens- big hugs to you. I can't imagine how hard it must be to have your child faced with this combination of problems. Sounds like she's making good progress, though with many fires still to be put out. I'll keep you both in my prayers.

I'm not familiar with Standard Process. Is that a name brand for the supps you mentioned?

Nefferdon- 10 thousand dollars????!!! OUCH! I'll try the apple cider vinegar thing, thanks. Sounds easy and accessible and worth a shot.

Michael- How to figure out whether or not the pain in my esophogus i'll feel if I take abx is a herx or because i'm doing further damage is a huge question.

Figuring that is one great reason to be sure of the trade-offs ahead of time.


Six- I have no idea about to little vs. too much acid causing the reflux-- didn't even know to ask. Thank you so much for bringing that point up. I will definitely ask my GI, Lyme and primary care docs about the possibilty.

Trying to summarize all of this, here's what I get-

1. whatever is causing the reflux, there are various things to take to help sooth or lessen it.

2. if the reflux can be addressed then abx might be more viable.

3. IV's might bypass the problem altogether, but they aren't an option.

4. oral abx are going to aggravate the esophogus.

5. i'm not holding anyone responsible for even a sliver of whatever i choose to do, but it sounds like a consensus to risk the abx?

really huge thanks again for taking your precious time to try to help.

dill

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lou
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Bart is known to be a cause of GI problems. Is lyme 101 going to include bart treatment? Might be a factor, although it is hard to disentangle TBD symptoms.

If orals cause problems and IV out of the question for now, there is also IM, as in bicillin or rocephin shots. People on this forum have done shots themselves.

Best of luck in whatever you decide to do.

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sixgoofykids
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Dilly, if you go to the site I posted, there is a test there that you can do at home to see. It's a naturopath's site.

--------------------
sixgoofykids.blogspot.com

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sometimesdilly
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Six-

baking soda test sounds easy enough. will try it tomorrow AM. thanks again.

Lou- I think Bart is Lyme 102. If I knew what abx to suggest to the PCP for Bart, she might or might not be willing, probably depending on how exotic the abx sound to her, but it would be worth a try. thanks.

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Razzle
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There is NO test for sulfite sensitivity - it is only confirmed through elimination diet/re-challenge.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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map1131
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dilly, I'm thinking bart is the one attacking the GI. Maybe smaller start of rifampin which attacks bart and it's said it also does disrupt the lyme.

I know when I've done rifampin protocol for bart, it always stirs up lyme sx and herxing.

Rifampin does wonders for my GI issues, but mine are at the other end of GI system.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Lymetoo
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dilly said,

"Says that the severity of the reflux suggests to him that while Lyme etc. may have contributed to it, or set the stage for it, the reflux is too significant to be attributed to just that.

What is causing the reflux seems to me to be central to what I do next. If Lyme is not causing the reflux, then abx won't help with that, and might make cause serious harm because of the Baretts."

---

--A VERY BIG CONCERN!

--------------------
--Lymetutu--
Opinions, not medical advice!

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lou
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Dr. Bleiwiss' essay on lyme mentions reflux as a symptom of lyme. What I am wondering is whether some of the symptoms attributed to lyme are actually from coinfections. He wrote this when no one knew about bartonella as a TBD. But maybe multiple germs can cause the same symptoms, just to make it more confusing!

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"Mitral valve prolapse is not uncommonly found in LD. MVP can be associated with confounding chest pain and ventricular arrythmias. It is often accompanied by Mg++ deficiency and LD can cause Mg++ levels to be low. In a few of my patients, MVP developed only after the onset of LD and resolved with LD treatment. Chest pain due to LD may arise from numerous causes: myocarditis, pericarditis, angina, asthma, bronchitis, periostitis of the ribs, pectoral myositis and tendinitis, sternoclavicular and costochondral arthritis, esophagitis and esophageal spasm, stomach acid reflux, and gastritis. "

http://cassia.org/essay.htm

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MichaelTampa
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I have had acid reflux issues, and they have increased when introducing each new abx, but then after a week or so, were overall improved after continuing abx. I am convinced that for me this is treating a real problem and herxing from it.

Given you're not sure how far your doc will go for you with coinfections, I want to toss out one idea, which is factive. Factive is a fluoroquinolone, as is levaquin. Levaquin is 3rd generation, factive is 4th generation. Other than factive being a newer one, I can't tell you the difference in 3rd vs. 4th. But, factive is known to be active against borrelia and bartonella.

Again, I would really hope for you to find someone who could energy test a few different abx for you and pick the best one, along with testing for the optimal dosage for you. But, in absence of that, factive is worthy of consideration (as are several others) from the perspective of getting at borrelia and bartonella, and having a better shot at helping your acid reflux problem.

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MichaelTampa
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Back to your most recent question, though, which I forgot in the midst of my last post--is it worth it to risk the abx?

It comes down to, you say you're going downhill here, is it because of the lyme versus the barret's. If you're confident it's from the lyme, then it seems you have no choice but to risk the abx. If it's from the barret's, then that should be your priority.

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Lymetoo
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Hoping to hear from nenet on that special tea recipe!!

Are you OK, nenet?

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--Lymetutu--
Opinions, not medical advice!

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lymednva
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(((((((Dilly))))))), so sorry to hear what is going on with you and hubby. I don't have much to offer, except to echo the idea of bart being a cause of all this.

My daughter has had this type of problem, along with other bart symptoms since she was young.

We are 99% certain my middle one has bart, as the cause of his mental illness, plus he has the rash. That means she probably has it too, since it would be congenital, like his.

Just want to let you know I'm thinking of you. Lost my address book when my computer crashed last fall, so this is the only way I can contact you.

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Lymednva

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Carol in PA
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I have reflux sometimes, and used to use an acid blocker.
Then I found out about D-limonene, and have been having success with that.

Read what happy customers have to say:
http://www.iherb.com/D-limonene-Orange-Peel-Extract

Regarding yeast and gut health, look into Kefir.

Carol

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17hens
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quote:
Originally posted by Lymetoo:
Hoping to hear from nenet on that special tea recipe!! Are you OK, nenet?

Here's the GERD TEA RECIPE that netnet sent to me for DD. I'm assuming this is what she was speaking of (correct me if I'm wrong, netnet).

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[*You should drink the Stomach Tea 2 hours away from your other medicines, as it coats the lining of the stomach/GI, and may affect absorption.*]

_________________________________________________

**Stomach/GI Tea**

I drink this every morning and evening, as far from my meds as possible.

Per one quart of water:

3 Tablespoons Slippery elm Bark
2 Tablespoons Marshmallow root
3 Tablespoons Chamomile Flowers
1-2 Teaspoons Dried Ginger (optional)

Bring to a medium boil for 5-10 minutes, or until viscosity visibly increases on the surface. Turn off heat, cover and let steep at least 4 hours (overnight is fine). Strain through 3 layers of cheesecloth - you will need to have enough that you can gather up the edges and squeeze the liquid out, as it will not drain freely beyond about 1/3 of the volume.

You can make enough to last a week (about 2 quarts/8 cups) and store in a closed container in the fridge.

Shake the container before pouring (it settles quite a lot). Cut the resulting liquid by 1/2 to 2/3 with boiling water, to serve 1 cup 2x per day (or mix and reheat with 1/2 cup detox tea and add hot water to taste).

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"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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17hens
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Dilly,

Can I share with you what I think about GERD and Barretts?

I think that if we can control the acid, whatever it takes, then we can heal the Barretts.

Barretts is NOT cancer. Not yet. And there are ways to help the body heal, even on the inside.

I think a homeopath would be able to help you with that.

My DD's RN homeopath completely believes that by healing the organs and adding some "helpers" (she prefers Standard Process) that the Barretts will heal. And with treatment, the GERD will go too. I believe her.

Have you ever gone to someone who can help you get your organs and "major systems" back to health? It might be the way to go right now.

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"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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