GFA Update & My Own Flu Healing Crisis

This is a long overdue update on my journey of treatment for health issues that fall into the "Generally Falling Aparti" category and sort of a continuation of my post A Day to Remember, But I'd Rather Forget<.  Please forgive me for the length.  With the help of Tamiflu, last week my husband Steve experienced an apparent healing crisis in clearing what our doctor believed was an infection with an untypable flu (neither A nor B).  Well, the doc believed I had the same flu, so I've been taking Tamiflu right along with Steve since March 31.  I've been very draggy since mid-February and had the worst sinus infection of my life in mid-March (and I've had many bad sinus infectionsi).  About the same time the sinus infection hit, I suddenly went highly arthritic in both thumbs.  The doc thinks this is reactive arthritis from the flu virus.  Steve's healing crisis appears to be done, leaving him very tired and weak.  Mine started Monday morning, and I allowed the fever to run its course with no attempt to control it.  Interestingly, my fever topped out at the same level as Steve's---101.4*F.

I've been holding off from updating my progress, because I've been waiting for certain health situations to be resolved or demystified.  First, I'll tell you that it's clear that both our doctor and I underestimated my Cpni infection, and I stopped the CAPi too soon (January 25).  Perhaps that was due to our attitudes toward my health issues, given their pedestrian nature.  How ridiculous is that?!  My father died at age 62 from his 3rd heart attack.  His younger sister is Alzheimerish with a history of inflammatory bowel issues.  From the knowledge I've acquired since signing on here two years ago March 29, there's no doubt in my mind that both of them were/are Cpn victims, along with my older sister, all of her offspring (including one case of Lupus), my cousins through my affected aunt, my male cousin's wife who has MS, and myself.  There are others in the family whom I believe are chronically infected, but the infection is manifested in less severe ways. 

In January, I also learned that I'd been battling Mycoplasma pneumoniae as well as Cpn.  Even so, I felt pretty well at the time, so I tried quitting the CAP under pressure from our doctor.  That well feeling only lasted for about 2 weeks.  Since then I've experienced undue fatigue and recurring arthritic pain in my lower back and hips more intensely than before starting the CAP.  Of course, it wasn't long before the onset of the thumb arthritis and sinus infection.

Those are the problems I've been able to feel.  I've been even more concerned about the problems I can't exactly feel:  higher than ever cholesteroli, high triglycerides, high blood sugar, higher than ever blood calcium, high liver enzyme counts, and osteopenia.  My blood pressure has been good for a change.  Before I started the CAP, I was having problems with spinal overgrowths irritating nerves.  Imaging and examination also revealed bone spurs, a heel spur, and osteophytes.  Mineral bone density scans from the recent past had shown above-average density...except for one which showed mild osteopenia of the left hip (I had not taken note of this before).  My gynecologist ordered a new bone density scan in December that showed I have osteopenia of the lower spine and osteoporosis of the left hip.  Those are areas corresponding to my arthritic pain in the past.  The gyno referred me to an endocrinologist who had a new scan done and downgraded the left hip condition to severe osteopenia.

Something changed during my time on the CAP, but there were other factors at play during that time and before.  I had stopped regular milk consumption in Spring '06 when Steve went casein-free.  In November '06, my HRT was stopped abruptly by my gyno because I hadn't weaned myself off of it as he had advised.  I had stopped supplementing calcium and D3 in December '06 after learning I had hyperostosis.  I had stopped drinking whey protein shakes shortly after that.  I started the CAP in May '07 and took 4-1/2 months of oral chelation concurrently with the CAP.  I understand more now than I did several months ago, but I'm still mystified by having osteopenia and hyperostosis at the same time. 

Doctor X advises me that I have a particular affinity for depositing calcium at inflammationi sites.  Plus, the inflammation that goes along with the CAP can cause a bit of osteopenia too (don't let that worry you/I believe this is very minor).  He says the elevated blood lipids and elevated calcium are conditions that go hand-in-hand.  I learned on my own that chelation calls calcium out of your bones as well as your arteries.  It's no secret what happens to women's bones when the estrogen supply is cut off.  A couple of weeks ago, I turned in a 24-hour urine sample, and the results of the testing showed abnormally high calcium content.  I'm to have more blood drawn this week for another step in testing toward determining whether or not I have hyperparathyroidism.  There it is, the thing that I've suspicioned since even before starting the CAP---hyperparathyroidism.  I sincerely hope I don't have it, because the only remedy is removal of the malfunctioning parathyroid gland.  If I do, though, I want the bad one (of four) removed as soon as possible.  Until I know for sure that I don't have hyperparathyroidism, I will continue to abstain from calcium and D3 supplementation despite the recommendation of my gynecologist.  If I do have it (or even if I don't have it), would anyone venture to take a guess what I think is actually behind this idiopathic condition in many cases?  That's right! Our old nemesis Clamydophila idiopath pneumoniae.  Just my humble opinion.

Comments

happy anniversary Steve &

happy anniversary Steve & Joyce

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

  Thanks Daisy, Wiggy, &

 

Thanks Daisy, Wiggy, & Ruth.  In my excitement, I used the wrong term (hyperparathyroid), but I should have written that my parathyroid level was normal.  Somehow that has been mistaken as referring to my thyroid.  The parathyroid glands are located in the vicinity of the thyroid gland, thus the name.  They secrete parathyroid hormone which gets the message to your bones to give up calcium.  However, my thyroid gland is on a slow decline---it's just not much of a problem at this stage.  But I'll keep your good advice on Dr. Brownstein's book in mind for the future.  Today's whisper sometimes becomes tomorrow's roar.

Now I've got some hard investigation and thinking to do.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, Dr. Brownstein is a

Joyce, Dr. Brownstein is a great doctor so I would buy that book. Happy belated annivesary-how did I miss this post? On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Joyce, my doctor has me

Joyce, my doctor has me taking Iodoral. I recently bought a book he recommended I get by Dr. Brownstein about iodine and was surprised to learn he recommends it for hyperthyroidism as well as hypothyroidism. The reason is bromine toxicity. Here's a link about this issue in cats: http://www.drbrownstein.com/blog.asp?id=119< You may want to order a copy of his book and look into the Iodine supplementation. When I started to take more of it, I went through some major detoxing.But it has made a very noticeable difference in how I feel. Check out his web site and see what you think. I am also using the unrefined sea salt (1/4 teaspoon in water a day) to balance my ph and rinse the bromine away. Hope you feel better soon, Raven CApi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Hooray!  My

Hooray!  My hyperparathyroid levels are normal!  But my calcium is still high.  The endocrinologist is mailing a copy of the test results and a prescription for Amiloride, a potassium conserving diuretic.  Hmmm.  I think I could become a problem patient.  I've read some on this drug this afternoon, and it makes me leary.  It prevents calcium excretion in your kidneys.  It can cause your potassium levels to go too high, and it's contra-indicated for diabetics.  I'm not terribly diabetic, but my blood sugar is consistently high enough to be classified as a bonafide type II diabetic.  The only thing rosy about this drug is that it's not one to pile up in your liver. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce  - Congrats on the

Joyce  - Congrats on the normal parathyroid !  Yay zero surgery!

Your calcium levels are a conundrum.  Keep at it I am sure you will figure it out ! 

Also - Happy Belated 10 year Anniversary to you and Steve - sorry I missed that in one of the posts in this thread.

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Congratulations on # 10, you

Congratulations on # 10, you are a great partner, hes so lucky to have you. Stay strong.

 

 

 

 

 

&nbs

Happy Anniversary to both

Happy Anniversary to both of you! Hopefully, nobody's pulsing and you can raise a glass (half-FULL, of course) to one another and know that things are getting better.

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

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

Hey everyone!  Today, Steve

Hey everyone!  Today, Steve and I are celebrating our 10th anniversary!  He's still the best man I know, and I wouldn't trade him in for a saintly super-hero or a Nobel prize winner.

Daisy,  Ah yes, stress is the factor I didn't mention, yet it colors my world every day.  For the past several months, I haven't cared for the color at all.  Praying, poking, prodding, scheming, orchestrating, maneuvering, manipulating, guessing, risking, watching, waiting, waiting, waiting...to reap little or no reward is so stressful, you can literally feel the "real-time" depletion of body, mind, spirit, and health.  I apologize for my tendency toward litanies.  The stress factor probably has as much or more to do with what has affected my health than any of the other factors listed in my post.

Louise,  I'm glad you and others will be watching this thread.  You see, I don't think there's anything exceptional about my health issues---they're so common, they're "invisible."  The only difference between me and the other 75 jillion people who have these types of problems is that I don't write them off as inevitabilities of aging.

Michele,  I doubt I could be more knowledgeable about Steve's conditions than you are about Ella's.  He's just consistently more available to me for putting him under a microscope and pestering him to death with questions about how he's feeling, what effect did he experience from this or that drug or supplement change, can he perceive even a nuance of.......It is my supreme hope someday to have to face the challenge of overcoming and altering the love-filled, obnoxious habits I've allowed to take over in my interactions with Steve.  Yes, it's our 10th anniversary, and I so hope #11 will find us both changed for the better.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, Like Louise I'm

Joyce, Like Louise I'm pleased you and your doctor have realised that you needed to be back on the protocol.   You know more about your and Steve's health and the problems you have than I ever could about mine and Ella's, so I have nothing to add to your observations.   I just hope you get to the bottom of it.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Thanks to all of you for

Thanks to all of you for your helpful and comforting comments. 

Ruth,  I've been taking 7-keto for almost a year now per Dr. X.  I re-started the CAPi when I got the bad sinus infection.

Andesine,  From my understanding, it is usually only one of the four parathyroid glands that goes haywire.  When the offending gland is removed, the others are more than enough to regulate your calcium.  I'm very interested to hear your friend's information.  I like the sound of "minimally invasive."  The kidney function indicators from my last round of blood work in February were okay, but they were slightly off in December.

Norman,  I've been taking magnesium consisently, but probably not at as high a dosage as needed.  Great information to know about its opposition of soft tissue calcification.  I had forgotten when I posted this that I have been and still am getting about 800 IU/day of D3 from a couple of incidental sources.  From Spring to December '06, I had been taking in 2400 to 3000 IU.  If I have hyperparathyroidism, I've probably had it for a few years.  My blood calcium had been 10 for a good while, but had risen from that in February.

Wiggy,  I'm glad I'm back on the CAP too.  I know better times are headed our way...wish they would go into warp drive or use a worm hole, though.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAP since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, thanks for sharing

Joyce, thanks for sharing your process.  I was a bit concerned when you announced that you were stopping CAPi this past winter.  So good to know that you are back on track.  I am very interested in the information that you are sharing around your osteo balance.   I will be discussing my bone health with my Abxi MD in a few weeks at my next visit.  He is a good blend of alopathy and naturopathy, a rare find.   I want to get on a program of bioidentical hormones that has real depth and substance.   I have taken magnesium for years, about 35 now.  Intitally because of foot and leg cramps. 

I do want to be sure to follow your blog. So glad that you are back on track for yourself.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#5 day 5 one more pill to go!

 Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

 Joyce -

 Joyce - Girllllllllllllllllllllllllllllllll - a lot I know.    Not only Steve's trying health issues but so many of your own as well. 

You are right to be worried about the things you can't feel - blood sugar, cholesteroli, high bp, elevated LFT's, etc...  glad you are going to keep pressing forward with a CAPi of your own.

Feel like many of these things have been happening to me too - but believe they are highly stress induced from the two years of pure horror with my husband. 

As several doctor friends of mine are want to say - STRESS KILLS.   More than most people realize.  Stress has been clinically proven to elevate cholesterol, blood sugar, elevated BP, general inflammationi, the whole enchilada. 

Like me - you pour a ton of your life force, time and efforts into helping your spouse.  It's very tiring and highly stressful.  At least for me...

I have been giving a lot of thought lately to taking better care of myself. 

Going to start with a full physical and reading your post today has motivated me to call the doctor today to book it.  Need to know what my baseline is now to measure my wonderous improvement. Wink

The other things I am thinking about - in addition to a badly needed respite vacation - getting back in the gym at least 4 to 5 days a week, going back to meditation class, rejoining my old yoga group, going to do a 5 to 9 day cleanse/partial fast - going to try to take every other day off from the computer, etc... and in general taking as much time away from my husband's illness as possible (at least for a while to rebuild myself).

Just throwing these ideas out there as studies have repeatedly shown that for many people - lowering stress leads to good non pharmacologic improvement of many silent killers. 

 Feel free to remind me of this at any time. 

Joyce - you have tons of tenacity and persistance as well as inner good character - as you stay on the quest for good health for yourself, I feel very confident that you will get there !!!

PS - believe Norman is on to something on the magnesium !

Daisy - Husband on CAP 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Joyce, A lot on your plate

Joyce, A lot on your plate over there - I hope things get easier for your family soon. I am glad you got back on abxi. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

To quote Steve Harris: One

To quote Steve Harris:
One thing you might consider, that certainly won't hurt you, is upping your magnesium intake. The magnesium oxide pills are 250 mg (usually), and you can take 2 or 3 a day with meals, without problem. Higher magnesium intakes oppose nearly all soft tissue calcification in animal studies-- nobody knows why.
He was advising someone else, of course (see here< for context), but the advice sounds like it applies here, too.

Stopping calcium supplementsi doesn't seem like a bad idea, but Vitamin Di is hugely important for the immunei system, and also helps prevent hyperparathyroidism. To quote Vieth<:

Hypersensitivity to vitamin D can occur. Primary hyperparathyroidism is probably the most common example. It would be simplistic to avoid or minimize vitamin D intake because of this. Before the occurrence of hyperparathyroidism, vitamin D nutrition is preventive because it reduces parathyroid secretion and lowers the likelihood of parathyroid hyperplasia.
(In other words, if your parathyroid glands are already out of control, then you may have to avoid vitamin D, but until you've reached that point, the vitamin is helpful.)

Cypriane, The wife of a

Cypriane,

The wife of a friend of mine has Hyperparathyroidism. There are few specialists in the UK but she has been seeing the best available. It runs in families and both she and her brother have recently had operations to reduce the parathyroids rather than remove them. There is a minimal invasive operation and I can speak to my friend tomorrow to get details.

As I was reading your post I was thinking how much like Julie's symptoms it sounded and when I got to the part about calcium in the urine I was convinced. She is currently being studied by the specialist to try and find out exactly why that's happening. They know her kidneys were calcifying before the operation  but she was under the impression that the op would stop that.

If you PM me it'll give me a reminder to try and get some info for you. 

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 600mg Feb 9th. Increased to 2400mg Feb 19th plus all supplementsi.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started Doxyi 100mg 20th April 2008

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

my goodness woman, you two

my goodness woman, you two are getting hammered with this & that!

I hope you are able to rectify these sxi as soon as possible to prevent further damage to your body.

Have you replaced the HRT with plant based natural HRT? (I suppose I shouldn't assume you were taking pharma products via your gyny).

I sure hope you can get back to killing some more CPni, bad beast! asap.  My prayers are with you both.

God Bless

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<