I know that the reason for a blog is so when things are getting a bit better, you can look back to how bad things were.
Or, when things are going bad, you can look back to how worse things used to be.
This is my reason for this post.
Paula doesn't like me "airing my dirty laundry in public", but when she is better that's when she can tell me off for doing it.
The way I see it, this blog is for both of us.
When Paula became bedridden back in Feb 06, it wasn't too long before I was unable to sleep in the same room. The first problem was Paula's sleeping pattern. (currently she sleeps from 4am til 12 noon.) The 2nd problem was that as she stays in the same room virtually 99% of the time, the kingsize bed also has the role as a table, with condiments, supplementsi [1], water, toilet roll - all within easy reach.
From about March 06 until about 3 or 4 months ago, I have slept on a matress or futon on the lounge floor. 3 or 4 months ago, as I wasn't sleeping and because my snoring would keep Paula awake, i decided to sleep at my parents' house, which fortunately is only a 10 minute walk away.
Sat night Paula had a major crash and was unable to contact me (long story relating to land line problem - now sorted and won't happen again - won't go into it here).
She normally leaves bed about once or twice per day to do a "No. 2" in the bathroom. Whilst there she will brush her teeth and wash her face, to save energy (ie - do everything at once since she is out of bed).
Sat night she decided, since she was in the bathroom, she would wash her hair in the sink. Within a minute of doing this, she realised she was running out of energy and she felt she would faint. She managed to get back to the bedroom and get onto the bed with loads of effort (she said to me today that she thought her heart wasn't going to take it as it was straining so much - she had never had that feeling in her life). Thank God she was able to get the attention of her 13 year old daughter by continuosly ringing the land line using her mobile, who was able to comfort her and put her socks on her feet (when her energy is down, her feet hurt). Paula said it took her an hour for her heart to get back to normal.
Paula's energy has been pretty bad today all day (Sunday) and continues. She is on almost the full dose of D-ribose and it doesn't seem to be making any difference at all. She can't take Glucose cos of the glyciemic reactions she has, so I don't have a clue what she should take to stop porphyrin production - other than the ribose which she does seem to tollerate but it doesn't give her any more energy.
When she perks up a bit, we have received from Dr AW, tests for Thyroid and Adrenal Gland, as well as another Dark filter blood sample test.
Things are pretty crap at the minute, but just looking for some support from you guys.
:-(
Mark
UPDATE 11th August 2008
Hi, just a quick update on Paula.
She slowly started to pick up after her crash last Sunday. IMOi [2] it was caused by a number of things:-
A) She had a shower a few days previously. She did say at the time that the shower didn't effect her energy levels too much.
B) She hadn't been sleeping very well for a few days.
C) On the night of her crash, she attempted to wash her hair in the sink, even though she had only had about 4 hours of sleep the previous night. A little voice in her head told her that she shouldn't be washing her hair. She says she will listen to her body more.
2 or 3 days after her crash, she was hit with porphyriai [3]. She had been taking her charcoal as normal, but we had decided the day previously to halt the d-ribose. She found it didn't help her energy levels and we were concerned that it may be making her worse.
This porphyria attack was not physical, but mental - major irritability, anger, small amount of depression - even maybe a small hallucinatory effect.
She decided to start the d-ribose again, and these mental porphyria symptoms vanished! Could be working like Glucose does with some people.
So, the ribose and charcoal seem to ease her mental porphyria symptoms, but don't seem to do much with the physical symptoms.
I am looking into Cholestyramine, to see if it can ease these physical symptoms which include:-
A) Major fatigue
B) Light sensitivity
C) Sound sensitivity
D) Smell sensitivity.
When/if I buy Cholestyramine, trying to get Paula to take it is "another kettle of fish" - she isn't keen at all. I would like to see if this may bring her porphyrin levels down further.
Paula has been on Roxi for about 4 months now. Her symptoms are worse overall since starting the CAPi [4].
So, the things in the pipeline, are as follows:-
A) Getting her thyroid checked out once she does the test
B) Getting her adrenals checked out.
C) Maybe trying Cholestyramine.
D) Tinii [5].
Thanks for listening,
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6]i [6] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07. 2400mg 1200mg NAC 200mg. Doxyi [7]i [7] Jan08. 150mg Roxyi [8]i [8] Dec 1st 08
Links:
[1] http://cpnhelp.org/taxonomy/term/63
[2] http://cpnhelp.org/glossary/term/181
[3] http://cpnhelp.org/glossary/term/175
[4] http://cpnhelp.org/glossary/term/168
[5] http://cpnhelp.org/chlamydia_pneumoniae/an_0
[6] http://cpnhelp.org/glossary/term/167
[7] http://cpnhelp.org/taxonomy/term/39
[8] http://cpnhelp.org/taxonomy/term/40
[9] http://cpnhelp.org/glossary/term/183
[10] http://cpnhelp.org/chlamydia_pneumoniae/supp
[11] http://cpnhelp.org/taxonomy/term/44
[12] http://cpnhelp.org/glossary/term/163
[13] http://cpnhelp.org/taxonomy/term/41
[14] http://cpnhelp.org/taxonomy/term/6
[15] http://cpnhelp.org/taxonomy/term/28
[16] http://cpnhelp.org/glossary/term/184
[17] http://cpnhelp.org/taxonomy/term/53
[18] http://tinyurl.com/6fuylh
[19] http://cpnhelp.org/glossary/term/120
[20] http://cpnhelp.org/glossary/term/170
[21] http://cpnhelp.org/taxonomy/term/67
[22] http://cpnhelp.org/glossary/term/162
[23] http://cpnhelp.org/glossary/term/171
[24] http://www.vitacost.com/NSI-GliSODin-SOD-The-Antioxidant-Catalyst
[25] http://cpnhelp.org/glossary/term/90
[26] http://www.ncbi.nlm.nih.gov/pubmed/16125296?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
[27] http://cpnhelp.org/taxonomy/term/142
[28] http://cpnhelp.org/glossary/term/177
[29] http://cpnhelp.org/taxonomy/term/58
[30] http://cpnhelp.org/glossary/term/164
[31] http://cpnhelp.org/taxonomy/term/24
[32] http://cpnhelp.org/taxonomy/term/19
[33] http://cpnhelp.org/taxonomy/term/7
[34] http://cpnhelp.org/taxonomy/term/36
[35] http://cpnhelp.org/taxonomy/term/38
[36] http://www.hairboutique.com/tips/tip1172.htm
[37] http://cpnhelp.org/taxonomy/term/26
Oh Mark, I am sorry things
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SPMSi [9]< Supplementsi [1] & NACi [10], Doxyi [7] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [11] 1500 mg x 3 days once per month
Mark, I am so sorry to
Mark, I am so sorry to hear it. I don't have a thing to offer in terms of solutions, I'm afraid, but I'll add you and Paula to my prayers.
Ron
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Ron
On CAPi [4] for CFSi [12] starting 01/06 (NE Ohio, USA)
Currently: doxyi [7] & zithi [13] -- continuous; metronidazolei [11] -- 5 days on, 9 days off.
Get the research results you paid for: support Open Access
Mark,I echo Todybear's
Mark,
I echo Todybear's appreciation of your committment. You and my husband have much in common, sorry to say. I, too, maximize my opportunities by brushing teeth, washing hair in sink, etc when energy dictates. Why, it was just a few months back that I could climb stairs practically at will, shower standing up, and wall walk pretty well.[msi [14]] Of course, that was before I took Pyruvate. Still recovering from that.
Though Paula and I are using CAPi [4] to treat different ailments, the porphyrins still wreak havoc. Neurotoxins have always been quite a nuisance for me and the secondary porphyriai [15] can be so exponential and prolonged that one can easily begin to lose hope in any recovery at all.
At the peak of the porphyria, nearly two months ago I felt horrid all the time--24/7. My symptoms were so extreme and debilitating that I thought surely I was dying. Today, though my gait is still compromised, I am mostly better.
I hope you and Paula will gain hope from my situation. That even when things seem overwhelming and bleak, time and anti- porphyria measures will ultimately bring healing. Take heart.
Please keep us posted.
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Wheldon Protocol for rrmsi [16] since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi [17]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qd for Babesia.
Mark,hopefully this will
Mark,hopefully this will pass. You might want to look into CoQ10 as a supplement for Paula to help her heart. Also check how much magnesium she is taking. Perhaps a little more would help. Here is an article about CoQ10:
http://tinyurl.com/6fuylh [18]
Hang in there and take care of you also. Caregivers have a heavy burden. Hopefully things will improve with the treatment. Is Paula getting any physical therapy at home?
You are in my thoughts and prayers,
Raven
CAPi [4] since 8-05 for Cpni [6] and Mycoplasma P. for Msi [14] and/or CFSi [12]
Also EBVi [19] and HHV6
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Feeling 98% well and going for 100! Still testing + for Cpni [6] since June '08.CAPi [4] since 8-05 for Cpn and Mycoplasma P. for MSi [14] and/or CFSi [12]. Also EBVi [19] and HHV6 NACi [10], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [20] and Methylation supplementsi [1]
Mark, it is really hard to
Mark, it is really hard to know which way to turn when things get bad. It has been my experience that things usually return to normal within a few day, or at least more normal than the recent past. There is the fact that you are not around at night which increases Paula's anxiety levels which in itself can cause your heart to over react.
D ribose had no effect on Ella's energy levels either, so am not sure that you should continue paying out for this if it is not doing any thing for her. It will be interesting to find out what the test reveal. Thyroxine do have an effect on energy levels and adrenaline exhaustion can deplete your levels too. You might ask Dr AW for a prescription for Questran which has proved effective for us in coping with porphyriai [3]...
I think it was Red who suggested that low dose steroids help with the inflammationi [21], so also something to investigate.
Hang on in there...
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Michèle (UK) GFAi [22]: Wheldon CAPi [4] 1st May 2006. Daily Doxyi [7], Azi MWF, metroi [11] pulse. Zoo keeper for Ella, RRMSi [16], At worse EDSSi [23] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Hi Mark,I'm sorry to hear
Hi Mark,
I'm sorry to hear this. I don't have any experience with steroids so it must have been someone else...
I think Michele's advice about trying questran really makes sense though. If you can't talk your doc into it, and since Paula can't use Glucose, one other thing that seemed to work well for me was GliSODin. I used this brand:
http://www.vitacost.com/NSI-GliSODin-SOD-The-Antioxidant-Catalyst [24]
I couldn't use charcoal as it seemed to make symptoms much worse for me, and I wasn't so sure about taking glucose continuously at the time (I've since changed my mind about this - but realize that not everyone can take it), so I had to go with the GliSODin. I took 2 (1000mg) each morning, and it really seemed to help give me energy, reduce nausea, aches and pains, etc - all what I now realize were symptoms of the secondary porphyriai [15].
I believe it mops up the reactive oxygen species (ROSi [25]) that is produced by the porphyrins rather than having a direct effect in preventing the porphyria itself. It might be worth a try if all else fails. Here's some info on the role Superoxide Dismutase in Porphyria. As you can see from the study, apparently our bodies try to produce it in spades in reaction to elevated porphyrins:
Response of glucose metabolism enzymes in an acute porphyria model. Role of reactive oxygen species. [26]
Beware though if Paula has major problems with gluten. It contains wheat gliadin, but it didn't seem to bother me all that much even though I had wheat sensitivities before CAPi [4]...
Hang in there. Make sure Paula drinks plenty of water to help try to flush the water soluble porphyrins out of her system...
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Treatment for Rosaceai [27]
Mark, Try to put your
Mark, Try to put your unpleasant feelings about this episode aside. It's probably not the last time something like that will happen, though I know your preventive efforts will minimize the risk. Save your precious energy for emotions and actions that are positive and constructive; that's all you can afford. She survived this time and she will the next.
The first time I witnessed my husband's heat-induced paralysis, my emotions turned me into "hamburger jelly." Not any more. Now when it happens, I get busy. The result is that I now feel empowered because I know what to do. This will happen for you too.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [9]). CAPi [4] since August 06, Cpni [6], Mpn, B. burgdorferi, systemic candidiasis, EBVi [19], CMV & other herpes family viral infectionsi [29], elevated heavy metals, gluten+casein sensitivity.
Mark - I am going through
Mark -
I am going through another dark time right now with my husband, so I may be know a little of how you feel. In a word - b*ll*cks. All I can say is hang in there!
Going through these crashes are what brings about better days for us.
I keep chanting this to myself every day as my husband is on day 23 of a Tindamax pulse . I almost gave up yesterday and again today and stopped but I keep reasoning with myself we must pay now or later. Might as well be now. Keep telling myself to be brave and press on for there is no other good choice.
You have received a lot of good advice from the posters above hope you are able to achieve some relief.
I will throw this out there too. Here in the US there are tons of "Help I have fallen and can't get up" services. It's a little necklance or bracelt that disabled people wear that if they fall or get in trouble they can press the button and it will summon help. You can program them to call emergency services or family members. or some of them have speakers that link to a phone speaker in the room so that Paula can direct the service to call whom ever she likes - you, ambulance, her physician, etc.... Since Paula is so disabled and alone much of the time, it might be worth it. Just a thought...
Hang in there Mark, I am with you in spirit!
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Daisy - Husband on CAPi [4] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Hi Mark, I read here
Hi Mark, I read here about "Tagamet" which is Cimetidine, to help the worst symptoms and tried it, and yes, it helps; I bought it at Walgreens, over the counter! Hope it might help Paula too!!
Mark, because of the strength of the situation you have to start to see how can both of you can get stronger. To better take care of her You need to sleep well, eat well and be full of energy. I suggest for both the vitamin B-12, sublingual.
About her exhaustion I see very good suggestions here and I wonder what is causing such weakness in her? Try to find the cause to be able to help her better. Has she had beta blockers for her heart? Give her the CoQ10 but consider talking with her Doctor to help her with that heart situation - I have suffered it a lot and the beta blockers have changed my routine; I think the worst of all my symptoms is the heart problem because I get to the point of not being able to do anything! ... Try to stop that problem!
And I need to share my healing process when I found that all the infection was originated in my sinus and after using things to clean inside my nose, including the blessed "silver sinus nasal spray " - that kills bacteria and fungi - I am much better! I mean, try to find where is the problem located; look for the cause, and the cause of the cause!!! It might mean the difference in the treatment and the healing process!! Do not surrender!
Please don't stop sharing the clean and dirty laundry; it is what keep us all gathered here and alive!!!!
Give yourself a little help too, so you can help her better!
God Bless you all.
Maria.
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God bless you all.
MariaPatri - living in a rollercoaster! (In Orlando, Fl).
Thyroiditis, sinus infection, heart, muscles and joints.
Thanks everyone for your
Thanks everyone for your comments. Paula was a bit better this morning and I will find out when I get home, how her energy is doing (I am writing this from work).
I will read all of your advice properly very soon and try to digest it. Many thanks to those of you who have pm'd me. I will also read and digest those soon.
This site is the best.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08Mark, I am hugging you both
Mark, I am hugging you both right now. You both are doing the best you can. This process may well be the worst & best thing that could have happened to you. Worst short term, best long term.
Having ME I am only too aware of the devastation of my energy supplies. Over 2 years ago I had complete exhaustion & I know about getting things done in the bathroom. This is a lonely illness for me. Now after being out of the work force for over 2 years I have few friends. I spend alot of time in the house, alone with my little best friend Stanley the Irish Terrier. If it weren't for him.....well I just don't know.
Things are improving for me since getting the CAPi [4] underway; now it has been over a year & pulse 13 starts tomorrow.
You are a good mate & I applaud your courage & determination. There is light at the end of this tunnel & as MacK(?) once put it, it isn't a freight train.
Seek the good & you are both in my prayers.
r
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CFIDSi [30]/ME 32 yrs, FMSi [31],
IBSi [32], EBVi [19], CMV, Cpni [6], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08Mark, rest assured you're
Mark, rest assured you're not the only one who has been banished. My sleeping patterns were appalling although they are now much improved. Harv snores for England so even when I could sleep, he woke me up. He now has to sleep in the second bedroom. Family think this is really weird but the fact is, you do what you have to do so that both of you can keep functioning.
You are doing a great job so hang on in there. At times it probably feels hopeless but it's not, whatever the outcome you're making a huge difference.
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Berkshire, UK. Diagnosed RRMSi [16] Feb 4th 2008.
NACi [10] 2400mg. All supps. Doxyi [7] 200mg. Zithi [13] 250mg. Metroi [11] 400mg.
No GP/Neuroi [33] support. Self medicating with help from David Wheldoni [34].
Started CAPi [4] 20th April 2008. First pulse June 2008
Hi Mark, I have been
Hi Mark, I have been thinking about you and this situation.....first of all, dont feel guilty. you have to get sleep and stay healthy. you are 'no good' to paula or her daughter if you are sick.
When thinking about this, 2 things come to my mind: 1) Paula needs to have a second game plan for situations when you may not be immediately available. 2) Also, maybe have limits on what she does when you are not there. like: no hair washing since it takes too much of her energy, etc.
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Mphs, TN. CFSi [12], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [6], myco, EBVi [19], CMV. Capi [4] began in 6/07. NACi [10] 2400mg, doxyi [7] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [11] pulses
Thanks Todybear & Ron for
Thanks Todybear & Ron for your support.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08Thanks kitkat2. I believe
Thanks kitkat2. I believe that the majority of the CFSi [12] symptoms that Paula has are due to porphyriai [3]. The d-ribose and activated charcoal do ease the mental issues. I just hope that cholestyramine may help the physical. What were you taking for your porpyhria?
But at the end of the day, she probably has a lot of porphyrins in her blood. At least we are currently chipping away at it, bit by bit. She has been on the Roxi for about 4 months now, and I wonder if she is suffering from more cpni [6] die-off, causing more porphyrins.
You mention the problems that Pyruvate caused you. Paula seems to get hit by the abxi [35] more after she takes some ribose.
I am glad that you are starting to overcome your porphyria.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08Thanks Raven. Paula is
Thanks Raven. Paula is currently taking the dosage of magnesium recommended on this protocol. She is also taking 60mgs of Q10 4 times per day.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08Thanks Michelle. As I
Thanks Michelle. As I have said above, I think the ribose has helped Paula's porphyriai [3] related mental problems, so she is taking it, like other people take glucose tabs.
All I need to do, is get some Cholestyramine and try to get her to take it, which may understandably be a hurdle in itself.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08Thanks Red. Paula won't
Thanks Red. Paula won't be able to try GliSODin as she is gluten intollerant.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08Thanks for your support
Thanks for your support Daisy and Maria.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08Thanks Ruth, Andesine and
Thanks Ruth, Andesine and Sharon.
Paula has improved a bit since last week. I keep reading about the improvements that other people on this site with CFSi [12] have made, and it gives both of us hope - hope we just wouldn't have without cpnhelp.org
We are so grateful to you all.
Mark
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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [6] dx. Apr07. Borrelia dx Sept08.
Samento 15 drops per day July07. 2400mg1200mg NAC200mg. Doxyi [7] Jan08.150mg Roxyi [8] Dec 1st 08You've probably thought of
You've probably thought of this already, but dry shampoo [36]ing might extend the time between those exhausting showers?
Ron
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Ron
On CAPi [4] for CFSi [12] starting 01/06 (NE Ohio, USA)
Currently: doxyi [7] & zithi [13] -- continuous; metronidazolei [11] -- 5 days on, 9 days off.
Get the research results you paid for: support Open Access
Mark, I have found a form
Mark, I have found a form of GiSODin which is not gluten in origin but from a beef liver source and is enteric coated for maximum assimilation. I am taking 1200mg per day. 50 tablets $10.35US locally Brand name is KAL established in 1932. Th product name is S.O.D. 3 400 mg per tablet.
It has been helpful and I am taking Calcium Pyruvate 3.75 Gm (5 capsules) 2 hours after a.m. abxi [35] and 2.25 Gm later if the day fatigue is heavy. I have also added Sam-e 400 mg per day. The Pyruvate power caps and Sam-e is from the wholehealth.com source.
These neutraceutical supplementsi [1] seem to be bringing my energy to a more consistent and predicatable level.
Louise
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Louise CFSi [12], CPN+/Bb+,Wheldon CAPi [4] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [3] & Endotoxinsi [37] PRN, Doxyi [7] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support