New and confused! (long...sorry)

Hi, I am new to posting...have done a fair bit of reading since mid 2011 though and it has really helped. Thank you! I need to get round to creating a signature (sorry!) but my basic history is as follows (will try to keep this short - as with others, have been through the wringer with specialists convinced I was psychologically compromised....I even started to think I was!):- Chronic sinusitis/bronchitis/allergies/asthmai since early childhood; Glandular fever (EBVi) at 18 yrs; Diagnosed CFSi at 19 yrs; Multiple back operations between 19 yrs and 25 yrs (lamanectomy, fusion x 2 etc); Diagnosed with ovarian cysts 2009 (suspect they have been there for years); Diagnosed FM beginning 2011; Diagnosed probable MSi July 2011 (negative MRI but oligoclonal bands in CSF); Various neurological symptoms, starting with intermittent pins/needles, burning sensations from 12 yrs onwards. Symptoms would last a couple of weeks and then spontaneously disappear for years. Symptoms became progressively worse (and didn't remit) whilst undergoing months of stressful fertility treatment 2010. Successful IVF round Sept 2010 (yay!) led to horrific pregnancy - pins/needles spread EVERYWHERE along with neural pain, dizziness, cognitive problems, muscle twitches/global weakness but worse on right side, intention tremors, swallowing issues, FATIGUE, positive L'Hermittes (was told my symptoms did not fit MS by 3 neurologists and a pain management specialist!). Very very grateful to have been directed to Dr Powell by a fellow patient and tested positive to HHV6 (apparently through the roof...impressed even Dr Powell!), EBV, moderate mercury/lead/uranium/arsenic poisoning (!!!!) but negative to Cpni. Have just started abxi after being on NACi since august last year. I didn't have any reaction to NAC, however attempting to see if I react to abxi to make a diagnosis. My mother has had CFS for 30+ yrs, has high Cpn titre (something in the order of 1:550) so possible theory is that I contracted it in utero and therefore don't create antibodies. So now I am trying to work out what is going on, and if I do have Cpn (or something else...I don't really care what as long as it goes away!). Like I said, no reaction to NAC but have had to give it away recently as worked out it was the cause of my chronic stomach pain. No reaction to doxyi as far as I could tell, a couple of days on and off feeling flu-achy but no pattern as far as I could see so dismissed it as just being 'off' (i'm 'off' a lot so its hard to tell!).Started azithro and rifampin 2 weeks ago...about a week ago I started to notice horrible flu-achy - right into the bone achy - symptoms in my arms and especially legs that came on towards the end of the day. Also increased fatigue (but again, I go through periods of worse fatigue) and numb feeling above my right eye/cheekbone and weak feeling in right leg. I dismissed it at the start because I can't seem to find a pattern, except that the aching is worse at night (sometimes need pain relief to sleep). However just when I think maybe it's die off, I have a good day with no aches or neurological symptoms (apart from the usual). Then they are back a day or so later. I am driving myself insane trying to work out what is going on so I need advice from seasoned Cpn-ers please! I also suffer from Candida (flared terribly during pregnancy) so I am arguing whether the abx is causing the candida to flare and this is leading to symptoms, or whether it's Cpn (or whether my MS symptoms are just progressing). I find the aching intensifies a lot after I eat (I am on a low sugar, yeast free diet and steer clear of allergy foods) and I don't know how that relates to cpn. However in saying that my outward signs of candida have been much worse than they are niw and I've never had that deep awful ache or increase in neuro symptoms. I am going to start flagyli pulses next week to see if that intensifies my reaction...however would love any suggestions to stop my head going insane trying to work it out. It's all so confusing. Dies thus sound like cpn (or some other bacteria) die off? Am on all supplementsi, lauricidin, olive leaf extract, probiotics etc. Thank you so much. Oh, and I have a beautiful, incredibly active 9 month old baby girl who thinks she is too old to sleep during the day, so rest options are few and far between!
I don't know what happened to the paragraphs and line spaces, it's all run into one. Sorry to confuse things even more :-/

It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)

CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies

 

I don't know what happened to the paragraphs and line spaces, it's all run into one. Sorry to confuse things even more :-/

It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)

CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies

 

If you have HHV-6 antibody titers "through the roof" then you should consider getting treated for that.   EBVi may also be a problem for you.   

For more info see:  http://www.hhv-6foundation.org/

http://www.hhv-6foundation.org/associated-conditions/hhv-6-and-multiple-sclerosis

http://chronicfatigue.stanford.edu/infections/herpes.html

Good luck,

Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Thanks for this info. I should add that I am on 1000mg valtrex also :-)

It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)

CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies

 

Kate,  You sound like you're having classic reactions to treatment, so don't get yourself all stressed out over it.  And, as far as looking for 'patterns', there aren't any.  I know you want to label and quantify, but in this situation, you're just going to have to roll with it. Cool

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

Valtrex may not address HHV-6.  See:  http://www.hhv-6foundation.org/clinicians/hhv-6-treatment   Keep an eye on your titers.  If they stay very high you may want to consider another treatment approach.

Also, keep in mind that my doctor does not want me on 1000 mg of valtrex and rifampin and doxyi at the same time (too hard on the liver).  If your doctor is allowing that, you may want to discuss it with him.  (Perhaps switch to acyclovir)

I will be upping my valtrex to 1000 mg next week.  At that time I will be going off all antibioticsi to spare my liver.

Good luck.  It is no fun having both viral and bacterial pathogens causing problems!!

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Kate – our medical histories are very similar, including the many year of battle to find answers.  One of the things I’ve learnt is that there’s no point looking for ‘patterns’, or you just drive yourself crazy, because, as Mackintosh says, there aren’t any.

I’ve not had the opportunity to be tested for Cpni or for viruses, so I’ve no idea what the tests would have shown, but I’m trying CAPi empirically, and it certainly seems to be working for me.  I’m taking things one step at a time, and I’m hoping that by resolving the Cpn problem, it might enable my body to sort any virus problems there might be.

It’s not easy, but I’m doing my best to take Mackintosh’s advice of ‘rolling with it’.

Congratulations on having your beautiful baby daughter!

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) doxyi(05/11) roxi(06/11) tinii pulses(12/11-03/12, 10/12-01/13), amoxi(02/13)

Kate, It sounds like you're under the care of Dr. Powell, who is highly thought of and recommended in this community.  Trust him and trust the treatment he prescribes.  If he wants to address cpni ahead of another infection, trust him.  While this forum is comprised of many educated patients, who might be able to shine some light on areas of confusion, I don't think any of us should be Monday-morning quarterbacking Dr. Powell.

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

Sorry - if I said something I shouldn't, I didn't mean to x

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) doxyi(05/11) roxi(06/11) tinii pulses(12/11-03/12, 10/12-01/13), amoxi(02/13)

Gosh, no!  You didn't!

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

I'd post a smiley face - if only I could fathom how to do it! x

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) doxyi(05/11) roxi(06/11) tinii pulses(12/11-03/12, 10/12-01/13), amoxi(02/13)

Kate welcome

You will keep more of your sanity if you stop looking for a pattern, as Mac suggests.  She's right, as soon as we say "Ok, this is my pattern", it will change.  Concentrate instead on your incredible new child, your partner, taking abxi, and supplementsi

When you are hit hard by the protocol, that is - at least for me - the time not to back off, but to hit back as hard as possible. 

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.

I am new as well. Also a Powell patient. I hit supplementsi hard for 5 months prior to starting CAPi hoping to help the process. I will work on doing a signature as well. I was hoping to avoid doing CAP...sigh.... It comes down to a leap of faith.

I bumped up the NACi (I had been on 1200 for a while) and within a week it hit me. Stomach ache- fatigue and a big ol zit/ cold sore on my face. (I rarely have breakouts) I just started on the zithro this week. Per protocol will wait 2 weeks to take next dose.

I am alone now and it kind of scares me to be doing this. It is hard for me to reach out to others. I am glad you are all here. 

 

Robiroo

Thanks all! I am certain this is die off - the last couple of days the intensity of the aching has quadrupled and I've been bit by a wall of extreme fatigue. Without encouragement from others here I'd probably throw in the towel. MacKintosh - I am glad you said to 'roll with jt'...I think I can muster the energy to roll but that's about it. Now if you'd said 'jump on the bandwagon' or get ready for the long haul I think I'd be in trouble. Neither jumping nor hauling are part of my list of capabilities these days I'm afraid! Rica - tks for your advice to hit back hard. I needed to hear that. Timaca - good point about my liver copping a flogging with the valtrex. I am having regular blood tests to keep track of how it's coping. Robiroo - good luck as you start your cap journey. Definitely a HUGE leap of faith. I just got a cold sore on my nose! First time ever. If it's not bad enough to feel crappy, we have to endure looking awful as well! Again...thanks. It's a hard thing to do, an even harder thing to do alone. hopefully one day I can provide support to people starting out like myself. For now, I just read and admire everyone else's strength.

It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)

CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies

 

oops - duplicate post

It is better to believe than to disbelieve; in doing so, it brings everything into the realm of possibility (Einstein)

CFSi/FM (2001); 'probable' MSi; Cpni; EBVi; HHV6; Chronic sinusitis/bronchitis/allergies

 

Kate~

I also get HSV1 outbreaks (on my lip) when I go through a herx (die-off) or have a reactivation.  I think the body is stressed during such times, the immunei system struggles and HSV1 pops out.

Good luck,

Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Nope, no throwing in the towel for you, Kate.  Besides, what's the alternative?!

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

Yeah I was just thinking about that, wanting to throw in the towel, but I already know what that yields. I get discouraged and yet I know I have to be willing to try this. I have had symptoms on and off for many years. So this is the first time I have ever addressed the infectionsi, other than nutritional and supplementsi that I have done for years.

Robiroo

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