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#1 gregkdc

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Posted 14 May 2015 - 12:33 PM

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I posted on this forum a little while ago about my IBS and how well I felt on antibiotics.  I am just returning to this forum to let you people know what I have figured out and what I think is causing my symptoms.  Just as a reminder I got the best results from amoxicillin and clarithromycin used to treat H. Pylori, but the symptoms came back and all of the tests for H. Pylori were negative.  Anyway after more research and testing I have been diagnosed with chronic lyme, and I am just putting this out there for anyone that may have had similar symptoms and experiences so they can rule it in or out for themselves.  Just as a warning chronic lyme is a very controversial topic and diagnosis.   You can literally spend months researching lyme just to get a feel for what the possibilities are and what the controversy is all about.  Most Dr.s wont know where to get the best testing done, using the right lab made a huge difference in my case because the majority of labs don't even test for the bands that I have that are very specific to lyme.  A good place to start is to watch under our skin  on youtube and to find a lyme literate Dr.  I just barely started treatment but already feel like things are improving , I will come back and update this from time to time if you would like.

 

Just a quick recap of my symptoms and illnesses

 

Main symptoms are abdominal pain, mild dizziness, fatigue,  bloating, constipation/diarrhea, slight depression, on and off severe low back pain, decreased libido.

-Diagnosed prior to lyme diagnosis with the following

 

  + IBS  after I had a clean upper/lower gi, negative allergy test, negative test for pathogens, negative bowel inflammation,  negative blood in stool,  negative celiac test and on and on

  + Osteoporosis  39 year old male doesn't make sense no one can figure out why

  + low T

  + sleep apnea  treating with CPAP with no real improvement with energy or fatigue except while on antibiotics

  + depression and anxiety

  + H. Pylori   (some sources say the test can cross react with lyme this is what made me think I should test for lyme)

 

IBS treatment and results

 

  + Incredible results with intracellular anitbiotics fro H. Pylori    IBS was completely gone for a while not to mention other improvements like decreased brain fog, increased energy and libido

  + no results with rifaximin and a later trial of rifaximin/neomycin combo.

  + no results with yeast diet and long term diflucan

  + no result with anti parasite or protozoa meds

  + no results at all with probiotics I have tried pretty much all of them.  The good ones didn't do anything the bad ones made it worse

  + marginal improvement with fodmap diet but steadily worsening symptoms and sensitivities over the years 

 

Just remember if you do decide to go down this path you really do need to find a Lyme literate Dr. to get the best tests.  The problem with lyme is that there are no good tests.  There are tons of false negatives and  even the best test will still miss a lot of people.   Greg




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#2 jaumeb

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Posted 15 May 2015 - 05:37 AM

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Very interesting. Thank you for this comprehensive post that summarizes your situation. Could you provide some details about the treatment that is working for you?

 

You mention you tried several probiotics. Did you try florastor?



#3 gregkdc

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Posted 15 May 2015 - 02:56 PM

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Pretty much the only treatment for Lyme is more intracellular antibiotics.  I have only been on them for a few days and was noticing improvements with brain fog and bowel movements.  I just found what looks like a rash and may have spoke too soon about it working.  About the Forastor I have never tried that particular brand but I have been on a boulardii probiotic for the past month due to all of the antibiotics.



#4 kals

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Posted 15 May 2015 - 03:51 PM

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i don't think they'll rid of flour and yeast



#5 jaumeb

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Posted 18 May 2015 - 04:34 AM

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Pretty much the only treatment for Lyme is more intracellular antibiotics.  I have only been on them for a few days and was noticing improvements with brain fog and bowel movements.  I just found what looks like a rash and may have spoke too soon about it working.  About the Forastor I have never tried that particular brand but I have been on a boulardii probiotic for the past month due to all of the antibiotics.

gregkdc, which brand of boulardii did you use? Did you notice any positive or negative effect?



#6 gregkdc

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Posted 18 May 2015 - 09:34 AM

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It is Klaire labs "Antibiotic Support", http://www.klaire.co...asp?id=K-ABX-60

  Like I said earlier I never really noticed any improvement with probiotics.  This one hasn't made things worse and is used as a prophylaxis for candida. I just finished up a weekend of pretty bad diarrhea as well as having a rash that started off strong that has now almost completely gone.  Right now my guts feel pretty good they have stopped gurgling and I am emptied out with no more diarrhea.  I am still taken the antibiotics so with the rash almost completely gone this makes me think it was a die off or herx reaction versus an allergy.  From what I know of allergies you don't become desensitized with continued exposure they should get worse.  I did contact my Dr. about the rash just to be safe.



#7 jaumeb

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Posted 18 May 2015 - 11:43 AM

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Thanks gregkdc. The reason I asked is because I have tried four different brands of boulardii

- Douglas Labs

- Kirkman's

- Orthomolecular products

- Ultra levura

 

I think the last one is making a difference. But it is too early to be sure.



#8 gregkdc

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Posted 27 May 2015 - 03:38 PM

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Update;

I have been on low dose antibiotics for a little over two weeks and I just realized I haven't had to take a laxative the entire time.  I wouldn't say my IBS is gone it is still constant and only mildly improved with the pain and discomfort.  The good news is that I was able to eat coleslaw and corn on the cob with minimal bloating and pain like I normally would get.  I hope things continue to improve form here.  In about 3 weeks my Dr. will up the amount of antibiotic, I am certain now that the rash I had was a die off reaction as allergies just don't go away and lyme is known to cause a die off rash. I also realized I haven't had any headaches, before I averaged 2-3/ week.  I asked the Gastro that I was going too about intracellular infections and he didn't think it was.  He said that the particular combination of antibiotics could have worked to kill my SIBO, but the more I go down this road the more I think it really is the lyme.  Greg 



#9 jaumeb

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Posted 28 May 2015 - 03:03 AM

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Which antibiotics are you using now?



#10 gregkdc

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Posted 28 May 2015 - 09:17 AM

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I am on low dose clarithromycin/ amoxicillin.



#11 jaumeb

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Posted 28 May 2015 - 10:03 AM

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Thanks for the info. Keep us updated about your progress.



#12 Leo41

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Posted 26 June 2015 - 10:40 AM

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What was the stomach pain.. can you describe.. location, type of pain.



#13 gregkdc

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Posted 26 June 2015 - 12:41 PM

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The pain is a diffuse dull ache throughout the abdomen and varies from mild to moderate, made worse with palpation and pressure.  At its worse it makes me agitated/grumpy and I will start to feel it in my groin almost like I have been kicked where it counts.

 I am on about month 2 of antibiotics and I have had a mix of good and bad days concerning the "ibs" symptoms.  For the most part I would say there have been over all improvements.  I still have the pain but it has never really gotten that bad and is tolerable from when I started.  I would say I still have IBS but I haven't had to rely on laxatives when things get backed up.  Anal hyperhydrosis has gone down quite a lot.  Gas and bloating have gone down enough that I can occasionally eat problem foods like corn, garlic and onions but I have to remember to not push it.  Headaches have decreased and every once in a while I now get a day where I feel good and have energy.  I just wish the results were faster when I did the antibiotics for H. Pylori I had immediate relief like I was cured, you also take quite a large dose.  With this low dose regimen the improvements are more gradual and subtle.  My lyme doc says that it can take a long time to get rid of chronic lyme (if at all possible) and it has been his experience that upping the antibiotics only increases the chances of side effects without much gain in treatment success. 







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