posted
Hubby really needs an LLMD gastroenterologist.
Has anyone seen one they would recommend? -- anywhere in the country.
Lasted for 45 days on Babs treatment before stopping -- was helping quite a bit with seizure-like episodes and sleep. G.I. symptoms got too severe -- nausea, dry heaves, cramps and pain entire abdomen -- no diarrhea. Pain causes tremors and myoclonus in arms and head.
I know it sounds crazy, but dry heaves and vomiting always sets off other neuro symptoms. At least the Bell's Palsy and clawhand are improved and no longer activated by the G.I. symptom attacks.
Tried to treat possible gastritis with some herbs and Carafate for 2 weeks -- some minor improvement.
Restarted Babs meds 3 days ago as seizure-like episodes were getting worse off meds -- G.I. symptoms worse again already -- didn't really think gastritis was actually healed.
Have tried many many herbal and nutritional supplements over the last 5 years -- nothing much has helped. Have been to 5 different gastroenterologists -- of little use. 3 endoscopies showed chronic gastritis with varying degrees of severity. 1 colonoscopy was normal.
Antacids always make hubby feel worse.
I think hubby needs a really really good gastroenterologist or an herbalist -- alternative medicine docs have been of some help in the past, but have tried just about everything they know to do.
Have treated for G.I. parasites a couple of times. Never has h.pylorri. Pretty sure it is not a yeast problem. Takes lots of good bacteria -- acidophilus, bifido and s. boulardi. Watches his diet -- no gluten or dairy or sugar.
Has treated for Bartonella -- levaquin 3 months and Cipro 1 month plus a few Rifampin -- no improvement in G.I. symptoms.
Still has his gallbladder, but even drinking water can trigger G.I. spasms so do not think the gallbladder is the problem.
Meds -- Small doses of Quinine and Clindamycin alternating with small dose of Amoxycillin every 10 days. That's it as far as scrips go -- no major changes in herbs and supplements recently.
IV Ativan will work somewhat on both the seizure-like episodes and the G.I. spasms, but drugging him with 5 or 6mg of Ativan every day is not getting us anywhere.
Have tried massage and chiropractic recently -- even plan to schedule an accupuncture appointment although it has never helped in the past -- getting a little desperate here.
Any ideas ??????
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I don't know if this will be useful info for your husband or not. I had very bad GI problems for well over a year. Not as severe as your husband, but brought my weight down to 89 pds at one point. I am a 5'3" woman (48 yrs old). I have chronic lyme, currently intolerent to any antibiotics and 8 months ago started to turn "gray". I have done the whole IV thing, oral antibiotics, yeast medications, GI docs, had to have gallbladder removed (with only slight improvement. 8 months ago my lyme doc suggested Hyperbaric Oxygen treatments to try and bring my immune sytem back up (have very low IGM). Don't really know how my immune system is doing....but I can tell you it has drastically reduced by GI problems. I am up to 94 pounds now. Some days I still have problems, but no where like before. Just thought I would pass this along.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
Antacids make my symptoms worse too. I suspect by lowering the acid they discourage the good bacteria (acid-dophilus = acid loving) and let the bad ones take over.
Are the probiotics in enteric coated capsules? It can make a huge difference: Solaray Multidophilus 12 which comes in enteric coated capsules works best for me.
Also helps: ginger and "comfree" (another Solaray product) with every meal.
Posts: 727 | From USA | Registered: Mar 2006
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posted
I don't know if you've heard of this before, and it may sound a little "out there", but it works.
Take one teaspoon of apple cider vinegar in a half cup of water before meals. This works well for my husband who has been on Aciphex for 2 years, and 2 other friends of ours.
It may be well worth a try for your husband who has obviously been suffering so much. It is inexpensive and very effective.
The very best of luck, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I sent you a PM.
nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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Hyperbaric oxygen would certainly put your husband in a better place over all and probably with the right protocal can even allow him to decrease his abx intake. I used low dose long term abx therapy supplimented with HBOT and have been off of antibiotics now for almost a year.
Probiotics are a definite must and as for the apple cider recipe. It is recommended that you only use organic apple cider...otherwise it will irritate the lining of the stomach instead of neutralizing the acids in your stomach. So yes it does work : ) At least for me.
I will send you my blessings and if you are interested in Hyperbaric Oxygen let me know and I will try and help you find the most affordable place in your area the accepts lyme cases. You are a bit far from me sorry to say.
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Hyperbaric is not really an option -- really can't afford it, plus not so sure if it is a good idea with Babesia. Hubby did try it once about 5 years ago before he was diagnosed. After 45 minutes he stretched or moved around and that made Parkinsonian tremor much worse and set off dry heaves (trying to vomit). Doc stopped the treatment when this happened. Don't think I could talk hubby into trying this again even if we had the money.
dguy,
Actually started hubby on comfrey about a week ago. Helps some. I have read about this herb and don't think it is nearly as toxic as it is made out to be. Am using the leaves which should be less toxic than the roots. I add 1 or 1 1/2 tablespoons of dried chopped comfrey leaves to a cup of warm water and let it sit for about 10 or 15 minutes.
Also add other herbal tinctures to the "tea" -- chamomile, catnip, yarrow, cramp bark and a few others. Hubby drinks the tea and eats the leaves as well. Does this about 30 minutes before eating. The mucilage in the comfrey coats his stomach -- works about equally well with the carafate. Does each 1 or 2 times daily. ------------------------------------------------
Have tried the apple cider vinegar before and also Betaine (Hydrochloric Acid). Also tried many different brands of digestive enzymes and Bile supplements. These things are somewhat helpful if he does not have gastritis.
If his stomach is too irritated he usually has to stop all vitamins and supplements. Even glutamine powder which is supposed to be healing to the G.I. causes pain and increased tremors.
The nausea has been present for 30 - 80% of the time for most of the entire 5 years he has been ill. Usually much more active when Bilirubin is elevated (all other liver enzymes normal). Babesia meds bring the Bilirubin down to normal and improve nausea. The catch 22 is that Quinine is very irritating to the stomach (he is allergic to Mepron).
Stopped his meds again after 4 days. He actually had a pretty good 24 hours and even got to see some fireworks. Parked the car in a location where we could watch without the noise and crowds. Today the nausea and dry heaves (woke us both up at 8:00 am) and the headaches and sweats are already coming back.
Will call the 2 docs suggested tomorrow and go from there.
Thanks again.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Bea, how about trying a different approach entirely? How about 1) IVIG to calm his immune system down and boost it up 2) Hyperbaric oxygen as Julia suggests; in such case he might be able to tolerate the drugs 3) Google what they did with aplastic anemia some years ago, it's usually fatal, but they cured 14 out of 17 by giving them some drug that basically wiped out the immune system short-term and allowed it to reboot. All the mixed signals were 'fixed' 4) Stem cell therapy--you'd have to go somewhere to get it
At the very least, check out Xymogen's IgG2000, a doctor needs to prescribe it, but its an oral gamma globulin good for the gut. And for probiotics try VSL#3. The highest potency one available.
Posts: 2276 | From united states | Registered: Jun 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I doubt there IS a llmd gastro guy...
Anyway, I sympathize...
I did'nt notice anywhere that you have tried any of the prilosec,prevacid type gas inhibitors...
The apple cider vinegar tricks the body into thinking it already has enough acid in the gut and shuts down some of the acid makers...
Some antacids can actually make you feel worse...especially vomiting because you're on an abx that does'nt agree with antacid...make sure ya check that out.
As far as the HBOT goes...I have at least one friend who after her first treatment had a VIOLENT HERX...and they were less and less the more treatments she got...
Your hubby could have had this happen him...which in the long run would have been a good thing.
If the oral meds keep antagonizing his tummy...as they do mine...perhaps switching to IV or IM delivery might give his gut time to heal...
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Hubby has been taking the VSL#3 for about 3 years now -- recently added an additional enteric coated probiotic with some additional strains in it.
As for the gamma globulin -- been tested 3 different times by 3 different docs and all subsets of immune markers within normal limits. Don't really think this would help without a deficiency, but I could be wrong.
Tony Z,
Hubby has tried Prevacid I think and Nexium and I forget all the names of all the antacids. Actually the last antibiotic he did before trying the Babesia meds was IV Primaxin -- took 3 months to do a normal 1 month dose. But it was during this time that his G.I. symptoms actually began to go downhill again.
Then he did oral colloidal silver (Argentyn 23) for a couple of months which made the G.I. problems even worse. The quinine and clindamycin for babs were the last straw.
------------------------------------------------
Good news I hope!!! Have a phone appointment with the LLMD gastroenterologist in New Jersey on Monday morning July 10. Really curious as to how that will go as a phone consult. Doc said 30 -60 minutes for phone appointment.
Insurance will not pay for phone consults, but I would rather spend the money on someone who understands tickborne diseases than just waste time and energy at a run of the mill G.I. doc.
Will let you all know how this works out.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I just wanted to say how sorry I am that your husband (and you) have to go through all of this. You are such a wonderfully supportive person and your husband is VERY lucky to have you to advocate and care for him.
I do not know of an LLMD gastro, but if you find one as a result of this inquiry could you please forward the info on to me? One of my lyme friends has the same GI issues as you describe. She is always vomiting, but thinks this is vagal nerve related due to lyme damage. I would like to help her if I could. The gastro's she has seen so far do not understand lyme.
I also wanted to note that Quinine makes me VERY nauseated and I vomit on this clinda/ quinine rotation every time. I do not have this with the clindamycin alone. This makes babesia treatment very difficult. I ended up with an antiemetic last time and it helped considerable. I also get "seizure like" episodes so I know what he's going through.
Pat yourself on the back for all the hard work you do and hang in there!!
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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