Newbie with FMS.

So I was diagnosed with fibromyalgia in 2001-2002. Lots of body pain, muscle pain, significant fatigue, exacerbation by stress, exhaustion, feeling like I constantly had the flu, flare-ups after exercise and travel, mental fog, inability to track conversations, memory loss, muscle pains, and so on. Several years ago I tried to give up wheat and found some relief with that. Since then I have benefited from eating more meat and more fat. I then started believing in the low-fat craze. I put on a lot of weight also and started feeling really bad. I also developed Metabolic syndrome. I again gave up grains for the most part, lost some weight, and started feeling better. But I would still eat grains on the weekend as a treat. For the last few months, I have given up wheat completely as well as other grains. I do eat corn tacos occasionally as well as rice rarely. I have found that regular consumption of rice leaves me feeling exhausted. I used to take antidepressants but have stopped those. My FMSi sxi have been much better but I still have mental fog, get tired easily especially when I travel- I usually need a week to recover, have difficulty tracking long detailed conversations or journal articles (which I need to do for work), and can't deal with too much mental stimulation such as loud music etc. My sleep has been also been bad. Its hard to fall asleep and stay asleep which makes me tired and exacerbates the mental fog. While some things have gotten better over the years, I have to lead a pretty restricted life and maintain a lot of consistency- anytime I deviate from my routine, I have to pay the price. I think Jim refers to this as the tunnel- where your vision narrows completely and you restrict your life.

 Anyhow, I have been lurking for quite some time now and thought I should post. The weblogs have been really helpful. I started the CAP protocol 11/15/2010. It's been interesting in terms of the side effects. I feel like I have more energy and feel more clear mentally but also get angry really easily. Sleep has been weird too. I have been doing reasonably well on it since the last Flagyli pulse. That led to a lot of diarrhea for several days and I had to stop all the antibioticsi. I restarted several days ago but have diarrhea again and nausea. I've been taking probiotics and being careful about what I am eating. I don't know what else to do about this. 

 

Comments

Hi barefootrunner,sorry i

Hi barefootrunner,

sorry i reply a bit slow....Coconut oil has antichlamydial effects and its an anti-viral, you can also use lauricidin. I find them fairly similar in effect and strenght. Regarding diarrea i take probiotics 5 times per day for me it helps.

Treating PPMSi with Azithromycin 250 mg every other day, Doxyi 100 mg BiDi, Coconut oil 4 times daily,  five flagyli pulses. Been sick since June 2009. Having good success and very few symptoms.

Barefoot, Read it literally.

Barefoot, Read it literally. MSi-like. MS-ish. MS-ee. When we feel MS symptoms, we feel MSy.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Barefoot, Hover your cursor

Barefoot, Hover your cursor arrow over the little " i " next to EDSSi and you will get a brief explanation.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Wow your sxi sound so

Wow your sxi sound so familiar. I had many of those sx before I became "MSy". I believe the clearing of the mind is the strongest result for all of us and tells you that you are on the right track. It was the second sx to go, preceded by the dizziness. Make sure you try to sleep even if you have to take melatonin">i. Sleep is extremely important. Two weeks ago I did without sleep taking care of my daughter and sure enough, some sx's returned.

Also, please look at my blog speaking of Creatine and Beta Alanine for muscle weakness and muscle fatigue. It really has worked well for me and I encourage everyone that has the muscle tiredness/fatigue to at least try it for a couple of weeks before making a strong decision.

Christian

Started CAPi on 06/29/2010 for RRMSi. Dxi w/ Brevundimonas Vesicularis in Jan '11 hiding in #20 tooth with root canal. Extracted 04/04/2011. Clinically dx with Bartonella at the same time. Recently found MPn.

Abxi: 100 mg Doxyi bidi<

Munchman, what is MSy? I've

Munchman, what is MSy? I've been working on the sleep, been hard though with the anxiety.

 

Thanks

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

barefootrunner, I think

barefootrunner,

I think there is some misinformation about probiotics. For some time the conventional wisdom has been that antibiotics kill beneficial bacteria in the Gi tract and allow ones that may be harmful to replicate. And to a degree there is probably some truth to this. However I think that most of the GI problems that are experienced by people taking antibiotics are a result of killing or stressing Cpni and the subsequent immune response. Probiotics produce lactic acid which has been shown to induce Cpn into the replicating state. So this allows the antibiotic(s) to kill it. Unfortunately you cannot control exactly how much and how long the lactic acid will be produced so you can not control when you are going to have your side effects.

FM suggests that you have a substantial systemic infection. And your GI problems suggest a significant infection in that area. So I think you are just going to have to go slow with this. I think the best way to start slowly would be to address your GI infection first. There are several ways to do this but probably the easiest would be to take only zithromax initially and take either caffeine or pyruvate at times of the day (after work) when you can afford to have the GI problems. This should allow you to work and to whittle down the GI infection before you address other areas of the body. And based upon my experience and discussions with many others who have undergone therapy with FM or CFSi, this part of the therapy will probably take 2-3 months.

- Paul

PaulThanks for the

Paul

Thanks for the information. You are correct, I prob do have a systemic infection as well as GI troubles. Your post started me thinking about my history fo GI problems and they go back a really long way. I'm continuing with the doxi right now and am able to tolerate 200 mg a day. I've decided to wait for some more time and see how my diarrhea does before adding other antibiotics.

I wanted to make sure I understood what you are saying: 

1) that the GI problems are not necessary only because the good bacteria is being killed but is a die-off sxi?

2)there is more die-off if one takes probiotics?

3) You are suggesting I take zithromax instead of Doxi? 

4) I am not sure I understand the caffeine/pyruvate connection. I took a look at some pyruvate posts on the website. Are you suggesting I take pyruvate to reduce the side-effects (so after I take the abxi) or increase the die-off (so before abxi)?

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

The increase in enegry and

The increase in enegry and clarity is a very good sign.....I understand where youre coming from when you say you get angry easily. I do too. The more die off im having, the more 'taxed' my body is, seems to be quite related to how easily irritated i get, especially on flagyli or niacinamide......
Treating PPMSi with Azithromycin 250 mg every other day, Doxyi 100 mg BiDi, Coconut oil 4 times daily,  five flagyli pulses. Been sick since June 2009. Having good success and very few symptoms.

Hi jesper, Its a relief to

Hi jesper,

Its a relief to know that someone else is also having similar sxi. I am going to try activated charcoal tonight. I've also been having significant anxiety and pounding heart rate- I can literally feel my heart pounding. I am hoping that the charcoal will help with that also. 

 

Thanks for taking out time to respond. I am curious- how come you are taking so much coconut oil?

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

Decades ago, when I had a

Decades ago, when I had a "nervous stomach" (IBSi eventually linked to lactose intolerance), I was prescribed Librax (librium + Maalox). Worked wonders.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Hey Arttile, I've felt like

Hey Arttile, I've felt like I developed IBSi all of a sudden since the diarrhea started :-(. I'll keep your rec in mind - thanks for that. right now, the idea of taking maalox sounds really hard.
Diagnosed with FMSi 2003. Currently doing CAPi (started 12/1/10), Doxi 100 mg BIDi, Azithro 250 mg 3x week, last Flagyli pulse 1/23/11 for 5 2 days. 1st Tinii pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

I had the same problem (I

I had the same problem (I equate it with having a spicy-Mexican-food meal every day) for ten or twelve days when I first started abxi. First, I felt 'why me', then I decided, if this is what I'll have to deal with during treatment, then so be it. (I drank more water, ate bananas and hoped to staunch the flow, as it were.) I can't remember now if I took pepto bismol or not, though I know I surely would do so now, given the same circumstances. Of course, as soon as I decided to accept the burning, physically draining side-effect, it stopped. Go figure.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi MacKintosh, I tried to

Hi MacKintosh,

I tried to accept it too but acceptance has not made it go away at all. I haven't thought of taking pepto bismol will think about adding that. I just got activated charcoal and thought I would try it. 

 

Thanks for taking out time to post

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

Welcome barefootrunnerYour

Welcome barefootrunner

Your username is wonderful!  Though I am now 71 years old, I hope to be able to run again someday, though I wore shoes when I ran my little mile.

You may just have to get through the diarrhea - my feeling about this is that whatever part is "being worked on" either hurts like hell or doesn't work at all - there may be some other descriptive phrases, too.  If you are taking the supps, and paying attention to your "gut bugs", maybe you will improve and it will just go away.  Mine was the other way - for seven years.  I cdon't have any input on the diet - I have always eaten "anything that didn't eat me first", lots of vegetables, and pretty much everything on the "good list", and never suffered any bed effects from it - till MSi, of course.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Thanks Katman. I use vibram

Thanks Katman. I use vibram five fingers and love them. Unfortunately, I cannot wear them in snow :-(.

 

I don't mind getting through the diarrhea but I am unable to work. And if I don't work, its hard to pay for the meds :-). For now, I've cut back on the azi and am taking only doxi once a day (100 mg). that's helped slow it down somewhat and upped my probiotics.I'll see how it plays out.

 

Appreciate you taking out the time to respond.  BTW, what does EDSSi mean (in your sig)

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