Well, went off of antibiotics and flagyl, trying something else

Submitted by Lynnp on Tue, 2009-12-29 12:19

I am so sick of antibiotics and yeast!  Been on continuous antibiotics since 1990, iv's 2 antibiotics at a time 6 weeks here and there plus the antibiotic pills inbetween iv's, 19 years continuously.  I will stay on nac and 5,000 to 10,000 mg of vita c plus yeast fighters, supplements, etc.  and see how I feel.  I haven't felt good but one week since I started on cap in Oct '08. 

Oh, and stay on valtrex since my epstein barr and hhv6 are high.  And thyroid med too.  Started up allergy shots last fall again.  Was on them 15 years and stopped about 1998.  Maybe all of these things will help.  My neck is better.  I fell in the kitchen, twisted my neck, bruised my tailbone, had a bump on the back of my head, etc. and felt like I had been in a car wreck.  But, my c5 & 6 disk is better so maybe I twisted it back into place!!!  Hope so.  Okay so far.  I had on slick bottom old houseshoes so I threw those away.  The kitchen floor is ceramic tile but thankfully I twisted enough to land on the kitchen rug so it could have been the ER for me.  Thankfully didn't break anything.  If I had been older, I would have. 

I will be checking in and let you know if I am better or worse.  

LynnP.  I am sorry to hear of your fall in the kitchen.  You have had a very rough time with your illness to say the least.  I have learned that when you build up severe yeast in your gut,you can feel more toxic and sick. Our gut can cause so many diffrent symptoms that it can make our treatment almost unbearable at times. I have read many times in your posts that this has been a issue for you during treatment. The toxins from yeast can also make you more deppressed and out of control.

I sure hope you don't give up! this is a everyday battle that can make us all weary at times. You have come so far and their is a light at the end if you can find the balance to help your body with toxins.

We can all understand how frustrating this whole treatment can be at times but remember the good stories of the ones who are better.

I sure hope you feel better and good luck.

started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

LynnP, How young are you?  I could not help but think peri-menopausal hot flashes when you responded to my question of just what you meant by does everyone feel this bad in your previous blog.   These can start as early as 10 years before the official dx of menopause and complete cessation of periods.  Particularly your complaint of fluid retention.  Have you considered supplementing with Progesterone to augment your cycles?  Just a wild thought.    It is interesting that for many years before dx with CPn I chalked up all my ill feelings to the onset of menopause. 

My supplements are outlined in my signature.  If I fall of off them I begin to loose ground and improve with restarting them.   CAP is very important for me but I need all the other supports to maintain an even balance and energy level.

We all have a combination of factors contributing to our state of imbalance and our symptomatic complaints.   A year of CAP is not long enough of a trial and Flagyl is such a challenge, I don't recall if you changed to Tinidazole at any point but I have taken as much as 3 weeks at a time and yes I have the usual die off symptoms but not the really hard time that many complain of with Flagyl being a much older and harder to tolerate drug which is yes, much cheaper of course.

Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I started going through menopause at 42 and about that same time diagnosed with fibromyalgia.  I had back surgery about 6 months before that so I think that was a factor too, plus constant sinus infections.  I am now 56 and do take hormones.  I think I'm hot all the time from the yeast buildup and my immune system working overtime.  I've been on constant antibiotics since 1990 so I was told I'll never get rid of the yeast.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

 19 years with continious antibiotics!!!  you are certainly unbelievable. What was your diagnosis when you started?

              yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MS (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Constant sinus infections in the right sinus cavity.  I had 14 sinus surgeries from 1990 to 1996 and 3 tear duct surgeries to repair the right tear duct that had been cut off during one of the surgeries!  I was told I would have permanent fungal sinus disease from all the antibiotics which I have had for years also.  Every time I would finish an antibiotic I would get another infection.  Started having nasal scopes to culture for the right antibiotics and still got infections.  Oh well, it's always something!

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynne, you might try some Lauricidin for yeast,bacteria and viral infections. See my recent post about using licorice extract, phyllanthus and monolaurin together.I have had some significant die off from using this combination. Worth a try.... Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

LynnP, Lauricidin has also been recommended to me as well.  I have not had a chance to send for it just yet but plan to add it as an adjunct soon as I too think it could be a useful addtion.  Louise
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Lynn, just google Lauricidin and order it from the company that makes it. Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Lynn, just google Lauricidin and order it from the company that makes it. Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

My doc won't put me on the valcyte.  He said too many side effects.  I go on the hhv6 website from time to time just to read others' posts.  If my titers stay high for the epstein barr and hhv6 I will ask for it again.  I can't remember what my last counts were.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

LynnP, I read the book The Yeast Connection by Dr. Crooke (a much older edition years ago) and followed the advice for many years.  It has been a while since I looked at this book and I may still follow a lot of it.  

I had yeast in my teens as a result of taking Penicillin, it took years to figure it out, I finally was cured locally at least, after going beyond a family doctor and of all things, a dermatologist.   I mention this history because when I had candida titers done May 2007 the results were negative.  

Anyway here ares the link to the websites that I googled;

http://www.yeastconnection.com/

http://www.amazon.com/Yeast-Connection-Medical-Breakthrough/dp/0394747003

http://www.amazon.com/Yeast-Connection-Handbook-William-Crook/dp/0933478240

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Lynnp, I think that 3 links may be the maximum allowed so here is a fourth that may be off interest, it is a questionaire to evaluate where you might be right now regarding yeast.

http://www.yeastconnection.com/yeast.html

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

My doc put me on the special carb diet and I stayed on it about 4 months and then came Thanksgiving at my son's house!  I stayed with them a week and just gave up on the diet.  That was a year ago.  I just don't have the will power to stay on it.  I have given up any alcohol.  The holidays this year really messed me up so now that I am rid of all the junk I will try again. 

I've been off of the protocol about a week and still feel horrible so maybe nothing works anymore.  I did get my doc to give me the tini instead of the flagyl so I guess I'll go back on the cap and try it instead and see what happens.

Raven, what dosage of the Lauricidin do I take?

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynnp, Is the Special Carb Diet at all like The Yeast Connection recommendations?   Louise
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Yes, pretty much.  No flour, sugar, etc.  Can use honey, cocoa, make your own yogurt (pretty easy), can use farmer's cheese in recipes. It's also used for autism.  Go figure.  Just loock up special carbohydrate diet (scd).

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

LynnP~

If possible, ask to be tested at Focus Diagnostics Lab for HHV-6 and EBV.   They are a good lab to use for infectious pathogens.

http://www.focusdx.com/focus/0-home/index.asp

They are owned by Quest, so you may be able to work with your local Quest lab to get the blood sent to Focus.  (Of course, the doctor must order that the blood goes to Focus).   I just had my blood drawn today (7 tubes) for testing at Focus for most of the pathogens, and ARUP for enteroviruses (coxsackie B and echovirus), as well as the standard CBC, CMET and a few other tests.   

If HHV-6 and EBV are issues, then there is a really decent chance that enterovirus is a problem too (at least it is in a friend and myself).  You can take all the antibiotics in the world, and it won't touch the viruses, so you might as well run the tests and see what is making you ill.

With regard to the "too many side effects from valcyte" (what your doctor says)....well, you are sick...and not feeling well....so really what have you got to lose?   If HHV-6 is a problem for you, you will need to get rid of it.   If valtrex is not working, then you need to do something else.   Bottom line is run a lot of tests, and treat what is most obviously wrong.   Good luck.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Lynne, I also had sinus surgery twice. My doctor has recommended antifungal nose drops. I have read a few times that fungi are hugely involved in sinus problems. I have started lauricidin. I feel slightly spaced out. I think it is killing something. I hope your neck has recovered.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)