Update

Submitted by barefootrunner on Wed, 2011-03-16 23:15

Between reading the material here on the website and the s/e of the Abx (heart-pounding, significant feelings of anxiety), I started feeling really overwhelmed and confused. I started wondering if I should change the protocol, adopt the pyruvate protocol, and so on. I think I drove myself crazy. Then I got swamped with work and decided I needed to take a break from reading about cpn obsessively and focus on work (gotta pay the bills :-)). I'm sorry I disappeared without responding to people's responses to my previous blog posts. 

I have been continuing with the Wheldon protocol. I also added kefirto my diet for the probiotics as the capsules were not helping too much. The diarrhea has gotten better on and off. I am still have significant nausea and feeling crappy. I have added Ambien for sleeping back into my regimen as the Melatonin was not helping at all. Over the last few days I noticed that I had increased my consumption of sweet snacks. These would help me feel better emotionally but I was becoming more and more tired and started having more die-off sx. I decided to stop eating the snacks and candy and that has made a significant difference in my energy levels. I've actually been really wired last 2 days, so much that folks at work have started noticing how hyper I have been. While having all that energy has been good, its felt unmanageable today. 

I have also reduced the amount of red meat I consume which has made a significant difference in the pounding heart rate. I still have it but it has reduced significantly. I've also added starches back to my diet. These 2 things (and getting more sleep) might also have something to do with my high-energy yesterday and today . Interestingly, I was traveling for the last week and typically when I come back home after traveling, I have to rest for several days and the weekend is bad. This time, I was able to go to work for several days. I did rest on the weekend but still had more energy than I usually do. My partner has also been noticing significant improvements. Actually I am able to do a lot more work nowadays than I used to be able to - lot more mental clarity. 

I reported back to my doctor about the improvements I have been seeing because I needed my scrips renewed. She seems a lot more interested now. I feel mean saying that cos she has been willing to prescribe the abx for me (based on what I have read on the website, that is one of the most difficult hurdles). But now it seems her level of interest has increased based on my feedback.

I havent done a flagyl pulse for2 months now. I should do one but am scared given the emotional & GI rollercoaster I went on last time, esp since I have a ton of work to do. I wonder if I should modify the pulse to taking a large dose (like Paul recommended). Then I could just sleep the weekend away Tongue out 

So reducing red meat and adding starches and getting more sleep helped with energy?

I wish it were that simple for me 

I plan to start the higher dose of Flagyl twice a week and see how it goes 

 

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Thanks for bringing us up-to-date.... First of all, I hope you are taking pro/prebiotics and anti-yeast measures (sweet cravings and fatigue could be caused by that, and being on ABX definitely can add to yeast problems in the body).

Secondly, re:   "I wonder if I should modify the pulse to taking a large dose (like Paul recommended). Then I could just sleep the weekend away Image removed.  "    Personally, if you have to be functional, I would say NO -- because it may take longer than the weekend to clear out. 

Listen to your body, be diligent (in other words, keep at it) and go slow... if one tries to "double up to hurry up", it could set you back further and create more problems. 

JeanneRoz

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

My 500 mg dose of Flagyl cleared in about 5 hours... enough for me to get out of bed

Not sure how long a double dose would take 

 

 

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

After reading about the emotional rollercoaster of Flagyl and the GI effects I only ever took Tinidazole. 

I have been off CAP completely for a full year now and doing very well in all regards.  

You might consider switching the nidazole to Tinidazole,   I could take tinidazole on an empty stomach first thing in the morning along with Roxi and/or clarithromycin during my intermittent year

As for Doxy, for me, I always needed to take it the middle of a full meal with fat to avoid strong reactions such as, pain, nausea, and vomitting.  

Just a suggestion for thought, tinidazole is an acceptable substitute about 20 years newer and kinder on the system.       http://www.cpnhelp.org/tini_vs_metro 

  • 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

Homina- I have been experimenting with diet for about 14-15 years. Perhaps that is why I was able to figure it out.

 JeanneRoz - I am taking pre and probiotics. They do not seem to be helping much. I might wait to do the flagyl.

 

Louise, I have been wanting to do the tini- its just really expensive on my health insurance. 

Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

BFR... just as a note of encouragement... re pre/pro-biotics.  Keep taking them!!  Just because you think they aren't doing anything doesn't mean they aren't Image removed...

This was a big mistake on my part in my treatment by NOT being diligent -- it takes longer for your gut to re-establish once it gets imbalanced, especially while on ABX.

And as for the Flagyl.... who says you can't just take one tablet, or a full dose on just one day?   

JeaneRoz

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Thanks JeanneRoz, you are right. I have not been so diligent about it on the past. Some of it the FMS itself- it has been hard to keep track of everything I am supposed to be taking. Some of it was not realising how important it is.

I am trying to be more regular about taking the pre-probiotics now. I drink homemade kefir and/eat homemade yogurt. I am also taking probiotic caps@ night.

I do have a question (IDK if I should post this as a new thread). Doesn't the stomach acid kill all the probiotic bacteria we take? I always thought the stomach acid which is released when we eat food is so strong that it kills all the bacteria. 

Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

Hi, BFrunner.... re:

 " Doesn't the stomach acid kill all the probiotic bacteria we take?." 

From what I have read and understand, this is a controversial myth..... if you google "does stomach acid kill probiotics" you'll get some good articles to read about this.

But what I do know is, you can deplete your friendly flora if you do not supplement while on ABX.

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

All I know is that my digestion is better when I take probiotics so some of the pill I take must be getting past the acid barrier

I use Jarrow Dophilus EPS room temp stable in enteric capsules 

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Yea, it probably does make a difference if I take them regularly and enough (the key word being regular).  I am now drinking kefir and taking caps. Lets see if that helps.
Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.