Cpnhelp.org

MM~  That is wonderful that you are seeing such good improvements!  

Is your brain swelling pressure a constant thing, or does it come and go.  And how else would you describe it?  (wondering if it matches what I have)

As you know your intestinal issues could be from antibiotic use.  If you are wondering about intestinal infectionsⁱ, enterovirus is one to check for www.enterovirusfoundation.org.   I have been battling that as well as Cpnⁱ.  

May your good progress continue!

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

Thanks Timaca. I think so too. :)

I did have some brain swelling pressure before and during the CAPⁱ my first round. It increases with flare ups, herxing or overdoing it. But also when I went off the CAP it began increasing with no abxⁱ in time in greater intensity. It was getting worse than before I started the CAP so I was getting very concerned. My head felt tight as if it was a blown up balloon and my eyes felt like they were being squeezed. They got much drier and more bloodshot with stabbing pains and very slight blurred vision. It seemed my head & brain felt numbish to a degree most of the time, especially my forehead and it was hard to think clearly frequently. Had strange sensations in my scalp too. Nerve pain, tingling, crawling and specific areas at the crown of my head are prone to small size outbreaks. Maybe it is same as what is on my legs? Itchy bump, turn into sore bump, swell, burn and itch again, and then from scratching break the skin and then scab, then slowly heal leaving a small rough patch. Those same areas often would have sudden sharp pains like nerve pain. Sometimes my sinuses also feel numbish with a flare up or get dry, raw feeling so have some blood staines mucus. The scalp sores almost healed from the Tinidazole pulse but a few are coming back now. I hope my next pulse will clear it up. The Tinidazole and the Lauridcidin both seem to really hit it. Maybe it is a combo of bacteria/spriocytes and virus?

By the way, what is your brain swelling pressure like? I am curious.

 That is interesting about the enteroviruses. None of my doctors have tested me for any type of virus except for EBV my first years of illness. Then hepatitis panel cause I had a lot of high liver function tests back then. All were negative. One doc told me I don't have CFSⁱ cause my EBV was neg. ha ha ha. But since then I have had a couple tell me I do have it. Whatever. I hate the name anyway. ;) I get no respect from it. (rolling my eyes)

Around here it is so hard to get any real help cause unfortunately rural doctors are ignorant of complex illness. Plus my health insurance does not cover doctor appointments. By the time I get one to start helping me, they seem to prolong the process before helping me so I run out of money. It's crazy! I am trying to save up some more money to continue on. But we need a new roof so don't know how long before I will have any after that for further tests. If and whenever they get the more sensitive serological XMRV test, etc. available I plan to at least have that one done. How about you?

Thanks for reading my blog. Take care. MM

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2002:CFSⁱ. 2008-09:CPNⁱ - CAPⁱ/5 pulses. 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tiniⁱ pulses. Lauricidin/Yaeyama/supplementsⁱ recommended/firⁱ sauna/1,000 IU vit D. Stop charcoal/allergy. 6/2010: HighBP/Benicar, IBSⁱ, 7/2010: EBVⁱ, HHV6.

Hi MM~

I do have strange sensations in my scalp...and all over my body, burning, sparking, crawling nerve pain.  I don't have scabs or skin problems though.   

As far as brain pressures, mine are not constant, but come and go....sometimes quite suddenly and quite violently.  It can feel like someone is blowing up a balloon inside my head (in different places) then deflating it.  It can be a slow process (minutes) or very suddenly (seconds).  I can also feel like someone has whacked my head from the inside.  Suddenly and violently.  No fun.    I also have brain fog and cognitive problems.

I wasn't sure if your "how about you" question referrred to XMRV testing or not, but to answer about XMRV, I will be asking my doctors if they wish me to test for it when I see them this week.  

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

Yes Timaca. I am interested to know if you will be tested for XMRV. As soon as I can gain some more stamina on the CAPⁱ plus some $'s I want to find a good doctor. Maybe an infectious disease doc would help me? I am frusterated I keep bombing out finding a doctor that will help me but I won't give up. It is just to important to have one I believe. But I can't wait around getting sicker and end up an invalid just because the doctors I have seen are non-believers. So I have taken things in my own hands so far. OK. So maybe I am giving myself a pep talk by telling you this. lol Thanks for listening.

The sudden inflated feeling in the brain only happens to me if I am exposed to certain chemicals. But it takes hours to go away. Not the sudden deflation you described. That is a new one on me. Must be so totally strange to feel that suddenly. I do have at times a slow deflation feeling and I can hear snap, crackle sounds in my head as pressure is released. We definitely have weird symptoms.

Well, I am exhausted from one Tiniⁱ tablet this AM so I need to go lay down. Almost time to take the PM dose. I have a love/hate relationship with Tini as I believe many of us do.

You are wonderful to share with me. Thanks so much. MM

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2002:CFSⁱ. 2008-09:CPNⁱ - CAPⁱ/5 pulses. 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tiniⁱ pulses. Lauricidin/Yaeyama/supplementsⁱ recommended/firⁱ sauna/1,000 IU vit D. Stop charcoal/allergy. 6/2010: HighBP/Benicar, IBSⁱ, 7/2010: EBVⁱ, HHV6.

HI MM~

Yes our symptoms are strange, aren't they?  I am fortunate to have a friend who lives in the same town as I who has similar problems (she is not infected with Cpnⁱ though...but other pathogens).  So, we can relate.  And we see the same PCP, so that is helpful too.   And our PCP is wonderful.

I see two ID doctors.  They are both awesome.  Not all ID doctors know about this, as I'm sure you know.  

Don't give up and keep giving yourself the pep talks.  We will make it.

Best, Timaca

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Dx  lyme disease 3/05. Dx HHV-6, EBVⁱ, VZV, and HSV1 6/07. Dx with CPnⁱ 5/08 and enterovirus 2/09. On antibioticsⁱ for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyⁱ bidⁱ for Cpn, acyclovir for viruses, oxymatrine for enterovirus

Mying Meng, I have been wondering about you.  So wonderful to hear that you are able to be making progress with the protocol and that you are budgeting your energy wisely and enjoying more of life and do some more "normal sorts of activities."

Thanks for updating your blog.  Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Cool that you have an understanding friend and great docs Timaca. Having neither myself has made it so much more difficult for sure. But thankfully I can find help and support here.

Hey Louise. Good to know you are around. I started another pulse yesterday and have been coughing and sneezing since then. That is a good sign I take it? So I am laying low this week with increased fatigue and a achy body. I plan on two social activities in mid May when I should be feeling better again. Gives me something to look forward to after the hard work of a pulse. Yep. Pacing definitely is key to success with CFSⁱ, etc. Thanks so much for posting. So good to hear from ya.   MM

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2002:CFSⁱ. 2008-09:CPNⁱ - CAPⁱ/5 pulses. 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tiniⁱ pulses. Lauricidin/Yaeyama/supplementsⁱ recommended/firⁱ sauna/1,000 IU vit D. Stop charcoal/allergy. 6/2010: HighBP/Benicar, IBSⁱ, 7/2010: EBVⁱ, HHV6.

Hi MM, I was interested to read of your progress with your illness- your deterioration when you went off the CAPⁱ programme and now your improvements with the introduction of pulsing. I, too, have had a similar experience- I stopped abxⁱ for a period of 4 months last year and got worse and then found the Wheldon protocol and started in January- I am day 2 of my first pulse- and whilst it is probably too soon to say with confidence, I feel better than I have for a long while- even when I am pulsing ( mind you I may have a different song to sing by day 5). But like you, the early signs of statring to pulse are encouraging. Thank you for bringing me more hope from your post. I was alos interested in the comment you made about a feeling of a balloon pressure in your head- I have very bad neurological inflammationⁱ issues with my CFSⁱ- mainly headache and migraines (daily) but my early symptoms used to be that feeling of pressure in  my head also. I will watch out for your progress on this site. Wishing you well. Suzanne

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FMSⁱ/ME dxⁱ 2001. Started Wheldon Protocol 16 Jan. '10. Mino 100mg q 24 h. Roxyⁱ 150mg q 12h. Cholestyramine, LDNⁱ 0.75mg q 24 h. prophylactic migraine-topamax 75mg q 24h. migraines, headache, fatigue, sleep problems, body aches

Hi Suzanne. That is interesting how our CAPⁱ experiences had similar results. Thanks for sharing. I will be interested to see how you progress.

Our mutual neuroⁱ inflammatory issues have the opposite chronological order. The first few years of CFSⁱ/FM I had daily migraines but later they were replaced by the brain pressure swelling sensations and nerve pain which is easier to bare. Although my cognitive abilities are decreased either way. :p Hope you will eventually get over the migraines. Many do in time on CAP. All my best to you.  MM

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2002:CFSⁱ. 2008-09:CPNⁱ - CAPⁱ/5 pulses. 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tiniⁱ pulses. Lauricidin/Yaeyama/supplementsⁱ recommended/firⁱ sauna/1,000 IU vit D. Stop charcoal/allergy. 6/2010: HighBP/Benicar, IBSⁱ, 7/2010: EBVⁱ, HHV6.

Coughing, sneezing, aches, and fatigue...all familiar!  Yes, MM, as you well know, we must remember the (brief) moments of feeling good.   Enjoy (?) your down time as best you can - I empathize with you.

Rica

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

 I am a mess today. Do not read this if you can't handle it.

Thanks Rica. Not to have a pity party. I cannot tolerate pity so seldom talk to my family about my symptoms. They either look at me like I am nuts or like they can't bare it. This is the only place I can get healthy empathy.  lol

I mean unless you are going through it, well... I am sure you know the story,  my family just does not get it. Nor shows interest to get it.  Although I do know they love me.   But I am angry, recently I was disappointed again when visiting my parents & brother or seperate visits, our sons recently. They did not ask me once how I am doing. It is like the elephant in the room that nobody wanted to talk about.

By the way, I am not saying that my hubby isn't anything but 100% supportive. He is a gem, thank God.

Mostly everyone else seems to ignore me unless I am having a good day and can go see them or invite them over. Guess that is how they deal with it. But after almost 10 years of this I am frusterated as my resentment builds. Maybe I need counseling before I tell them all to go to hades. lol  Just kidding of course.

Maybe it is the Tiniⁱ talking today? I definitely turn into what some here call "The Troll Queen". Normally I suck it up and am sweet, mellow me but this Tini causes me to explode into the "demon queen" herself. That must be the toxins building as I kill the beasts within. Guess after saying all this I am glad nobody comes around cause it has saved me embarrassment. I mean so far I haven't told any of them off yet. lol

Well, I don't know why I wrote this for all of you to see what a mess I am today. Maybe so someone else going through this won't feel certifiable crazy or so all alone. This is crazy stuff for sure but I am positive I am not crazy. I think I will go out in my greenhouse now and transplant seedlings while sipping some green tea. That'll settle me down. Right? sigh. I hope.

It does get better thankfully. I like the part when I don't care again. Numb brain, numb heart. Probably stupid to expose myself like this. But there ya have it. So what are you made of today? Stone or flesh?  

 PLEASE, NO PITY ALLOWED. But good sound advice is always welcome.

Tini Toxic MM airing her dirty laundry today.

 (That is for the embarrassment I will feel later when I read this again. But at least I vented and got it off my chest so it doesn't hurt so much) 

Thanks to you brave souls that read this without judging me.

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2002:CFSⁱ. 2008-09:CPNⁱ - CAPⁱ/5 pulses. 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tiniⁱ pulses. Lauricidin/Yaeyama/supplementsⁱ recommended/firⁱ sauna/1,000 IU vit D. Stop charcoal/allergy. 6/2010: HighBP/Benicar, IBSⁱ, 7/2010: EBVⁱ, HHV6.

Mying Meng, I am reading your post so thought I would verify the experence of   "They did not ask me once how I am doing. It is like the elephant in the room that nobody wanted to talk about. "   This must be somewhat common as I have had the same experence with a number of "close" relatives.

Sometimes I think the Tiniⁱ talking is some of the stuff that we hold down most of the time slipping out, sort of allowing us to talk it but in the end we only feel worse for thinking more about the distressing lack of interest.   I guess it is worse with children, you do such a focused job of caring for their every need and then at least for me around this illness issue I become invisible sort of.   I sometimes give myself a round or two of mouthing off about it then find something more enjoyable to focus on.  I am the only one ending up with hurt feelings that is for sure.

So certifiable crazy you are not from my personal perspective of seemingly similar experience.  Perhaps it is to scary for them, really who is to say that down the road they may find themselves in a similar situation, after all our children have at least a good deal of our genetic predispostion potential.

I like your style Miying Meng.  Great writing.   Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

No judgements here, MM. Cranky seems to go with pulses; it's just part of the territory. It just seems to affect impulse control, and takes the lid off what we normally control, in the name of being polite.

As for friends and family, I've noticed my friends' eyes glaze over when I wax poetic on how great antibiotic therapy is, so I've learned NOT to discuss it unless someone pointedly asks. If they ask how I'm doing, I tell them, but I don't go into a dissertation. I think people become apprehensive that we'll go into a long, drawn-out soliloquy if they ask, so they stop asking.

So, that's why we're here.  We rant, we brag a bit, we get to verbally stomp around the room waving our fist at the universe... then we take our meds and get on with it.  Again.

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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

Miying Meng, I can certainly understand the, "white elephant" experience you relate to. This illness does cause huge change in our lives, some that can make us stronger, and able to relate to the human side of each person. The ones close to us have no way of walking in our shoes.  They just don't realize the everyday challenges we experience on a daily basis. I'm thankful for the little things in life and the chance to help someone that may have CPNⁱ.

You helped me today and many others.

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started Wheldon capⁱ 4/21/08 for Cpnⁱ, CMV, EBVⁱ, CFSⁱ. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell. Nitro patch, restore gut, 6000 D3, supplementsⁱ, T3, , 1/13/10 biofilm protocol, 1/10 Amoxicillinⁱ 500mgs. 1/23 Azith. MWF. Chelation for heavy metal

MM, I am not now pulsing but I sure am getting angry and frustrated. Perhaps, as you say, it is part of getting well in that I used to have the numb mind as well. I took a Concerta on Sunday in the hopes of getting some energy and i got some energy but it had nowhere to go except my head since my limbs don't respond very well. The result was a full day of barely contained fury. And resentment. An old man jogged past me and I wanted to bonk him on the head. So there! Running! How dare he insult me like that -- so insensitive !

Nancy 

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PPMSⁱ-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private m.d. out-of-plan. Wheldon CAPⁱ 3/2/07 - Now (3/10) doing 100 doxyⁱ; 125mg. azith; pulsing tin

With tears in my eyes, a gulp and a shaky smile... thank you so much Louise, MacKintosh, Horses12 and Nancy (Arttile). You all are so wise and so patient. It helps me so much to hear you have experienced it too and you understand it. Nancy, you cracked me up with your story.

Today working in my little greenhouse was therapeutic and I think a good night sleep would help. Hope I get it tonight. Sending you all hugs. MM

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2002:CFSⁱ. 2008-09:CPNⁱ - CAPⁱ/5 pulses. 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tiniⁱ pulses. Lauricidin/Yaeyama/supplementsⁱ recommended/firⁱ sauna/1,000 IU vit D. Stop charcoal/allergy. 6/2010: HighBP/Benicar, IBSⁱ, 7/2010: EBVⁱ, HHV6.

MM, we understand exactly what you go through. I am glad we are here for you to vent to.

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minocycline, azithromycine, metronidazoleⁱ 2007-2009, chelation for lead poisoning, Lauricidin: muscle pain, insomnia, interstitial cystitisⁱ (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (all well now)

MM

No pity here, either - just cheers for the courage (and stupidity - as in, how DARE us to think that we can get better! - look, we are all WORSE!)  To which I say - let's see YOU do it! or - stick around a (long) while, and see what happens. 

Yes, a good nights sleep (say...12 hours) can help.  When our bodies are filled with sand, it's hard to run.  Be patient (ha!) and at least some of the sand will leak out.

Rica

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Pulse #2  (4/26-30, 2010) seemed to have a bigger punch overall than pulse #1

I really appreciate your support and kind reassurring words after having the meltdown pulse day 3. Didn't get back here cause my eyes became sore, gritty and blood shot so I had to avoid the PC monitor a few days afterward as it worsened the dry eye pain. Typical for me though. Sneezing has gone but still have a cough.

5/1 - Sat. I had a surge of energy & well being which is unusual so soon after pulse for me. So being the type of person I am ( if my body isn't keeping me down ) I try to catch up on what I have been thinking about doing while I'm down. I mentioned I have a little greenhouse. My hubby bought it for me a couple years ago to encourage me to grow our own produce as he knows I love to nurture plants. This year he had built me four large planter boxes that I wanted to prepare for planting tomatoes and a cuke plant or two. So I was anxious to fill them with potting mix and plant the seeds. I know that sounds so simple as I write it. LOL Even my mind told me it would be, so why not? After all they were half filled already by my hubby to help get me started on it.

Well, it turns out working in a hot greenhouse for an hour or two (at the most) bent over, filling these planter boxes one scoop at a time is a whole lot of work for me in my present conditon. Not sure, but imagine it was the combo of heat, working, breathing potting soil particles, and the recent pulse active in my body causing it to be all just too much for me. My back really began to ache and then all hell broke loose Sat. night - Sun. night. Fortunately I am feeling better this AM. It was a high price to pay to get those boxes ready for planting. I never dreamt it would bite me in the rear like that or I would  not have done it.

Plan to lay low this week trying not to do anything to rock the boat again. I want to go out of town to my sister's house this month either the 15th or the 22nd so I do need to be in top shape for it. I can't believe I have not seen her in 9 months. If you recall, I had my first big day outing for her hubby's birthday party last year. I paid for it with PEM as usual but it was great to go to a social gathering with family at last. At least I make an effort when I can is all I can say about that.

So glad to know it is common for families, not just mine, to be so dense about our illness. I won't think of them as being uncaring & inconsiderate but that they are just typical pinheads. (shhhh. don't tell them.)

MM

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2002:CFSⁱ. 2008-09:CPNⁱ - CAPⁱ/5 pulses. 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tiniⁱ pulses. Lauricidin/Yaeyama/supplementsⁱ recommended/firⁱ sauna/1,000 IU vit D. Stop charcoal/allergy. 6/2010: HighBP/Benicar, IBSⁱ, 7/2010: EBVⁱ, HHV6.