Sticky Wicket a metaphor used to describe a difficult circumstance

Well here it is I am past the end of Dec.  My goal for my 10th repeat of  liver evaluation tests was before the first of the year to get the bill on last years insurance.  I was under the weather with a nasal cold.  I am clear now finally on day 13, the blessing is it did not make it to my lungs.  I used several boxes of kleenex, even with over the counter meds I was blowing my nose frequently but all and all I did well enough even with the "protection of my currently high Dose of D3" I caught this one, likely on Christmas Eve at the candlelight hymn centered service.  Likely from the children singing so sweetly behind me?  

So I have had some reason to drag my feet in writing to my MD with my update of my situation and to request my lab requesitions.  I find all manor of trivial persuits to destract me from the task.  Then I review once again the values that I have inserted into my makeshift grid.  Dates, test values.  The trend sablized at about 6 months with slight up and down variation probably of not much significance.

Last Feb 08 I took myself to a major liver transplant center for an evaluation of my GB for possible removal.  They did a thorough job of testing the complete gamut of liver affictions in relation to my elevated enzymes.  And in the end it was likely due to medication, doxycycline in particular per my medical record which I signed release for and was sent.  Of course if I had my GB out they could do a needle biopsy to add to the Ultrasound and lab results but except for the enzymes all is negative even the markers for cancer.  

I have taken pulses slowly and give much time for healing for most of the past year so to frequent pulses cannot be a precipitating factor unfortunately, I have tried that adaptation. 

In Aug and Sept I cut my doxy to 100 mg once a day.  No significant change even up a few points.

After the October values were in I cut out Doxy completely and doubled my Roxi for extra coverage. And my Vit D3 was temporarily upped to 10,000 IU per day to get my levels well into the high normal ranges and now needs a repeat evaluation.

Some folks told me here early on that they were not tested because of the tendency for elevation.  i do in a way wish that I had not started this observation as well.  I feel good, better than I had for years before starting treatment.  I am not in denial, I truely have more energy, attention and focus and clarity.  I have done more physical and mental sorting than I have in years this fall.  Even with such concerning elevations.

This is the jist of my last communication from my wonderful MD "

Hello ______ -- hope all is well.  Attached please find your latest liver function results which are again elevated.  As you know, this is most likely related to the medication regimen you are currently on.  Again, I recommend strongly considering taking a break from the medications to allow your liver to recover.  This is of course up to you.  As long as you are aware of the risks of permanent liver damage which can be fatal, and you wish to continue forward with the medication regimen, we can work together to protect your liver as best as possible.
I'll let you know when I get the vitamin Di results.  Please let me know if you have any questions -- thanks very much!  :-)

be well,  

 ________________

I think this is a disclaimer for self protection for himself, although there is truth to odds of damage increasing with increasing levels, I am still in what is considered moderately elevated range.  He actually never mentioned a break verbally to me or in any other writing.   I was not shocked however. 

I am the one who did not answer, I had not time for weekly daylong trips for IV therapy, or the possibility that I would once again since into incapacity,I had a life transition to finally get done which has haunted me daily for 3 years. 

Now I am ready to hear what he may have to offer and look once again at the data and consider the options.  I feel a bit naughty, yet I know that the stress of not getting the work done would have been heavey on me as well.

I have read the liver text book that Jim has referenced, I have combed the internet and know that I have another condition that could be contributing to unexplained elevations from the start.  I know there is not much that anyone can say, and please do not say the leave it up to the doctor correct answer, I'd say that too if the situation was yours.  

So I am blogging mostly for myself.  And for those who choose to know how this is progressing for me.

Thanks for listening if you made it through this whole discourse.    I am in the middle of my email letter to him, next week should have a plan formulated for me I think.  Guess I am ready to get down and out if necessary again.  However, I prefer not to!

Louise

Comments

Requesitions are in the

Requesitions are in the mail may arrive to day or tomorrow.   If today then I can get the lab specimens drawn tomorrow Friday and the send out specimens 25(OH)D  and CD-57 may get out the door before the weekend, the  liver test which is an in house result may be back before the end of next week, it arrives in my mailbox.    I always sign a release to have all test sent directly to me as well as the physician, this is the law about personal health informationmost folks here don't really knowabout,  that all they have to do is ask for the release form and say that they want it for their medical record and there is not arguement.   Then you have a copy for your records too should your provider not be one to hand over paper work as a matter of fact.  My provider does share copies of results so that is wonderful, but I like to have a heads up sometimes before I get a return communication and followup.   It is sometimes good to know the results ahead of time  so I can sit with the results and formulate good questions etc.   Seems that it will be another week, maybe two before I get this all sorted out and have an updated treatment plan and medication and supplementation lists.

It is good to be moving on to whatever the updated treatment plan becomes.   Louise

  • 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
  • <

Thanks for the offer

Thanks for the offer ruthless, I am not a member of facebook and have no desire at this time.  I was solicited by a professional peer as well as a part of improved communications, however it is not in my gameplan.  Glad it works for you. Louise   PS Cou you post some images here as Michele and Sarah have done in the past?
  • 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
  • <

God speed Louise, his plan

God speed Louise, his plan is the best; I trust that.  If you are a member on Facebook, pm me & I can add you so you can see some of my work.  If God is willing, there will be more to come.

peace

r

 

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<

Rutheless I am in the same

Rutheless I am in the same line of thinking as you are when you said;

I am just trying to do my best not to get into the position of where I have to stop the abxi The CPni scares me more than the thought of liver disease right now.  That aside it is best to be on the safe side I think-so be safe, regardless!

At 18 months towards recovering my productive life in the world (beyond existing which is where I entered this process).  I am now ready to take the break if it seems like there has been no decrease in my situation in regards to lab tests.  I have also worked myself up on adjuctive anti-chlamydial measures, NACi, Iodoral, Vit D3 high dose and tried the herbal anti-inflammatory measures suggested by my provider.  Unless he has another ace in the hole for me to try and I have had an amazing downturn from my plateau, I am going to be sitting with the choice for taking the liver cell regenerating abxi vacation that I have been discussing here and there on this website since the early Fall of 2007.  I am still waiting for my email back with lab requestions or a fax of them to me. 

My provider's practice is now closed to new patients, taking only family members.  So he is busy, that make me happy, because he will likely stay in his practice.  So I am patiently waiting.  Two more days and then I will follow up with a phone call to remind to read my email.    My next onsite at his office visit was sheduled for April during the first week in October.   I consider myself most fortunate to have a forward thinking doctor who keeps up with Intergrative Medicine and values nutritional and alternative approaches and modalities.

Enjoy your time in the sun Ruthless1.   Would love to see some of those desert photos sometime.   

Louise  

  • 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
  • <

Red, thanks for including

Red, thanks for including the link above:

Vitamin Di: It's Not Just For Bones Anymore, presented by David
Feldman
, MD, professor of medicine at Stanford:
http://youtube.com/watch?v=qpFgy8RkWO0<

In a month or so you could send the link again and just maybe he will click on it!  Innocent

It is hard to see connections all around you and not try to get involved in wanting to help, at least it is for me.

I am glad that you have the energyand drive to locate all this good information and continue to share it here.

Really I have been working on my D3 increase this past year personally motivated primarily from the bone angle as my body thinks that it is aging.

Now I am getting it that since I may likely test just fine on the 10,000IU, if I do I will suggest I stay there and retest again in X months of his choice.  When we chatted at my visit he said he would be OK with getting my level up to 100.  

And maybe if I do need a break for liver health that when it is a go again to restart perhaps intermittent will look good or back to full time CAPi.  I hope to have the CD-57 the Lyme marker retested to see the status of that situation. 

I did quite well with a 20 day Tinii pulse in December, decided to go for it with cryptic and cystic forms particularly if a forced abx break was possibly pending due to my sticky wicket!

Please keep all the breaking VitD3 research and papers adding to the list!

 


 

  • 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
  • <

Wow Louise, you've got to

Wow Louise, you've got to love that response!   Excellent to hear doctors catching on...

BTW, I sent the recent article "Use of Vitamin Di in Clinical Practice" to one of my now passed brother's doctors, a "brilliant" neuroi-oncologist at one of the leading brain tumor centers in the country.   I had basically begged him to "allow" my brother to take high dose D during his treatment, sending him tons of research to no avail.  My brother died of sepsis, btw, not his brain tumor, as one of his local oncologist's absolutely wonderful nurses pointed out that well over 50% of their cancer patients apparently usually do.

Anyway, this doctor's response was this:

Dan,
It is very intersting, an ignored area for years.  One of my colleagues at Dartmouth was convinced Vit D and its analogues were critical in cell differentiation and immunei regulation.

Thanks, XXX

For some reason, particularly lately after my brother and mother have passed from cancer last July and Sept, since my young nephew has had a recurrence of his salivary gland tumors that delicate facial nerve related surgery for on Dec 23rd has again left him with temporary (hopefully) facial paralysis, since my grandfather has been dxi'd with bladder cancer that has moved to his ureters, and since my aunt (my mother's sister) was just found to have a "spot" on her liver in in a recent MRI, "experts" who really don't understand current research really bother the crap out of me, so I felt the need to needle him further and sent the following:

You're welcome Dr XXXX.   Recent research actually suggests that Vit D3 likely does even more in relation to cancer.   

The slide found @ minute 26 in the following presentation by Dr David Feldman, MD at Stanford gives one of the best overviews I've seen of some of the current suspected Mechanisms of Anti-Cancer Activity of Vit D3. They are:

1. Inhibits G1/G0 cell cycle arrest
2. Stimulates apoptosisi<
3. Stimulates differentiation
4. Regulates tumor suppressors / oncogenes
5. Regulates growth factors or receptors
6. Is anti-angiogenic
7. Inhibits invasion and metastasis
8. Is anti-inflammatory

BTW, this is a great video on the importance of Vitamin D3, and it includes a very good discussion on the Vit D pathways in general. Towards the end (@ the 20 minute mark), it discusses Vit D3 in relation to cancer, including a nice up-to-date list of the suspected mechanisms involved I copied above.

Vitamin D: It's Not Just For Bones Anymore, presented by David
Feldman
, MD, professor of medicine at Stanford:
http://youtube.com/watch?v=qpFgy8RkWO0<

Again, hope this might help...

I received no reply to this follow on email (as I had expected).   I doubt he bothered to even open the video.  But still, I hope I'm weakening his ability to ignore the research little by little.     Either that or the evil little shit inside me gets some satisfaction out of at least annoying him every now and then...Laughing

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Well, I wrote the MD email

Well, I wrote the MD email and hit the send so I am improved just knowing that procrastination has been thrashed and perhaps next week I will be testing my current situation.

In the process of addressing all the concerns, I went through all the emails from the past fall with my MD and found the reply  to my suggestion that we go to Vit D3 10,000IU/day (over the 8,000 that was initially discussed at the time of visit) to get my level up, I had left a print out of  a paper by Oliver Gillie, Scotland's Health Deficit: and explanation and a plan.  In his response he made a passing comment regarding the article .   in this time of colds and flue it might be good to look at it again I think.  I just finished a head cold.  As some of our members are posting about as well.

      I am sure I found out about this paper here at CPnhelp.org, it is downloadable at: www.healthresearchforum.org.uk<

My provider responded;

10K a day sounds fine for a couple of months.  Usually toxicity happens with HUNDREDs of thousands of units daily.   I like Carlson's Vit D3; inexpensive and high-quality.  Interesting stuff about the influenza.  Check out www.vitamindcouncil.org<  for much more info. 
  • 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
  • <

Jim, Re-read your comment

Jim, Re-read your comment and am now onto the full write up from which you posted (yes I finally noticed the link at the end for citation). 

Seeing your comment the first time through had me wondering if Rifampin increases P-450 making more of it available in the body?  Hence if it is stopped and more toxic drug continued there would be less P-450 in the body to detox the remaining drug. 

So I am now off to the link to read the full review, thanks ever so much for providing it for a read.  Have not found that site before, looks like the contents of the reviews are rather in depth.

http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Monographs/CPS-%20(General%20Monographs-%20R)/RIFAMPIN.html<

Thanks once again for your assistance.  Louise  

Well, just printed it out and read it and it is a good read, answered many of my general questions and gives me increased respect for the drug.   I do see why it is generally a substitute for Doxyi and might not team well with Clari and that it might work in harmony with Roxi.  Lots of important considerations to be taken with the use of this pharmaceutical.   Many interactions of significance, definitely a precise balancing act.

Unlikely to be a good pick for me at this time and wouldn't want to waste yet either!

Again thanks so much for this link, I am now so much more well informed!

 

  • 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
  • <

Ruthless, I would be

Ruthless, I would be dancing the Highland Fling (is that what it is called?) if my AST and ALT where in your range.  I have no liver pain.  

About 15 years ago I took a chinese Patent Herbal Liver/GB cleanse formula and had the worst 6 hr GB attack of my life. 

Apart from Silymarin as reccomended by my physician, I stay away from purposely causing my GB to contract and my physician has cautioned me about mixing herbology with pharmacology without consulting him.  Both are powerful medicine and you need to know them both well to mix the use of them at the same time.    Yes I had a work up last Feb complete with US, full liver virus studies and cancer marker bloodwork in search of potential "other causes" for my "moderately" elevated levels.  IMHOi yours are on the lower end of "mildly" as might be expected for someone on meds that cause liver inflamation.  For me it appears to be the doxycycline.  I have actually had an 11 week period off doxy and on increased Roxi.  Testing soon will show the current situation.  A significant reversal is what I am shooting for with this treatment twist.   Unless there is something else that he has to offer me, it may well be time to take a break (certainly my last choice.)   I have taken multiple long pauses between pulses and that did not swing the figures one way or the other.  It is not the pulses, the numbers were up significantly before even my first pulse.

Guess that is all the message that I have for you, thanks for sharing.  Have fun in the sun making needed Vitamin D3!    Louise

  • 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
  • <

good luck with the Doc &

good luck with the Doc & lowering your reactions.

could it be you have a high concentration of CPni in your cleansing organs wreaking chaos & havoc.  I know that not all people who have the 2 genesi necessary to contract Hemochromatosis will get it.  So, something can trigger it...CPn?

I have had gallbladder problems in the past when I was pregnant & beyond that but they subsided.  When I am pulsing these areas in my body do get sore, painful.

Thanks for the heads up on the cleansing.  My doc gave the thumbs up.  I am just trying to do my best not to get into the position of where I have to stop the abxi.  The CPn scares me more than the thought of liver disease right now.  That aside it is best to be on the safe side I think-so be safe, regardless!

I am also using Yaeyama as it is a great mopper for me & helps keep the IBSi down to a very minor roar.

expecting the unexpected,

peace

r

 

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<

Hi Louise,I wanted to share

Hi Louise,

I wanted to share my liver related test values but from Canada.

ALT- H 64 (<50 U/L)

AST- H 63 (<40 U/L)

Iron- H 27 (8-25 umol/L)

TIBC- 43 (40-80 umol/L)

Saturation Index- H 0.63 (0.16.-0.60)

Ferritin- 86 (12-300 ug/L)

When I return from AZ I will have an ultrasound of my liver.  Neither of my docs even with my Hemochromatosis are saying stop.  In fact, my supporting natural MD has put me onto this Vitamin C & sea salt treatment for Lymes which he is using on his son & wife.  They have been "shedding" wormy things.  I am hoping to "not" see that going on, however, he is saying results have been miraculous in his opinion.  They are feeling better, I hope it is permanent.

I did a liver cleanse recently & have found my liver to be feeling better.  I took a long break between pulse 14-15 & then 15 & 16 were just 3 days & that seems to be better in the whole liver soreness dept.

All for now, I am slowly getting ready to be away for 3.5 months & as you know....everything takes energy.

Hope you are feeling better.  You may PM me but keep it short as you can as I find it exhausting to read long messages.   Thanks

peace

r

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<

Hi Reenie,Subtle hints?  

Hi Reenie,

Subtle hints?   Wink   I've actually blogged a little about it starting here on my full treatment blog thread:

http://www.cpnhelp.org/cpn_treatment_for_rosacea#comment-42400 <

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Hi Louise, have you heard

Hi Louise, have you heard of or tried a treatment called LIFE system?

I use it a lot and it helped me a lot. I think it really saved me many times with all my cpni,toxins and pophyria symtoms.

One year ago my liver was not working in the best way. I had a lot of liver symtoms and im sure I have cpn in my liver. When she scanned my body I hade a huge reaction in her general liver inflammationi program.

And the treatment really helped with this and everything else she treats me for like thyroid dysfunction, hormonal dysfunction, lymp dysfunction,bacteria,toxins, low oxygen and more.

So if you are interested you can ask me more about it.

I can really say that I found out that it helped me and my family.

Best Wishes from Maria

 

 

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid">i.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life

Louise- In scanning the

Louise- In scanning the rifampin lit, most of the liver toxicity appears to be in combo with INHi, commonly used as a combo in TB. It does seem to affect the liver enzymes:

Rifampin is a potent inducer of hepatic drug metabolism (cytochrome P-450). As a consequence, the rate of metabolism of numerous drugs can be accelerated, which can result in reduced pharmacological effects of the drugs involved or toxicity when rifampin is discontinued. Adjustments in the dosage and monitoring of the effects of these drugs is therefore necessary when used concomitantly with rifampin. This is particularly important when rifampin administration is either initiated or withdrawn. The effect on enzyme induction may develop gradually over several days after starting rifampin and may take even longer to dissipate after withdrawal of rifampin. http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Monographs/CPS-%20(General%20Monographs-%20R)/RIFAMPIN.html

My suggestion was that you talk to Dr. Stratton yourself, as you have been dealing most closely with the problem, and your doc too. He might also, as a microbiologist, know how much break you can afford if that's the recommendation.

 

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hi Reenie,Too funny!  

Hi Reenie,

Too funny!   I'm doing well, thanks.    Still getting better all the time.    It seems that most of my problems with secondary-porphyriai are now long gone.   Thank goodness and good riddance!        

I actually just started monthly intermittent CAPi last Nov and have two fairly easy intermittent pulses under my belt.  Since I seem to have less reaction on 10,000iu of Vit D3 along with the intermittent pulse than I did when I was on CAP plus only 4,000iu as I was when I stopped and went on only the high dose Vit D3 + Naci + FIRi Sauna therapy, that I've actually made progress on the alternative therapy.     Still, I want to kill off any of these little critters that are left, so just to hedge my bets, I've added back in the big guns (CAP) 10 days a month.  

We'll see how it goes for a little while.   Perhaps I'll go back on CAP full time if I don't continue to feel good improvement...

Hang in there...

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Red, Sounds like you're

Red,

Sounds like you're making really good progress.  It's good for people to read that there is life after antibioticsi and even if you need to stop for awhile and that intermittent doesn't mean regression or defeat.  

I hope you blog it so we can find the info later on!  (hint, hint) Laughing

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Red, How are you these days

Red,

How are you these days without antibioticsi?  What's happening for you?  This would be a good time to ask, me thinks.   Wink

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Hi Louise,Just in case you

Hi Louise,

Just in case you didn't realize it, the antimicrobial peptides or cathelicidins (LL-37) that are so dependent on adequate Vit D3 levels as the recently posted article on Vit D3 so aptly points out, have also been shown to have activity against  Borrelia burgdorferi:

Borrelia burgdorferi are susceptible to killing by a variety of human polymorphonuclear leukocyte components.<

I've posted more on the antimicrobial actions of Vit D3 and these antimicrobial peptides on the first post of the Vit D simple thread:

http://www.cpnhelp.org/importance_of_vitamin_d_p<

Could low levels of Vit D3 lead to rampant B. burgdorferi levels?   Me wonders...

I know it's a tough decision.    It was for me too... 

Hang in there...

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Louise, Have you posted

Louise,

Have you posted your numbers somewhere?  Which tests are we talking about specifically and how high?  

The high dose D and Iodoral might be enough (along with your better functioning immunei system) to keep whatever is still ailing you at bay. 

Rica's idea sounds like a good one.  This way, IF your liver tests are still high after stopping all abxi, then you know it's something else that has to be found.  

My Dr always tells me when I get an acute health issue that even us chronically ill people get other "normal" health problems but oftentimes they get overlooked.    

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

It is primarily the

It is primarily the Borrelia Burgdorferi that I am concerned about with a break.  And I was not ready to go down again but now I could stop my life once again, I have at the very least completed a long awaited mental/physical task that had been on hold for years.  I am halfway through the Letter to the MD will send it off tomorrow, he will likely see it early next week and we will go from there, labs are needed once again for the liver and the Vit D3 treatment.  Then again I might like being off to much and not get any further back to baseline that the elevation that I started with and the break could stretch on and on.  Do you know the lab values that you had before and after the break that you took? Louise
  • 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
  • <

You could, of course, go

You could, of course, go off abxi for a month and see. That is what I did four years ago when mine went way up. That would give your hard-working liver a recovery time. I was even on Rifampin at the time. We all know that is not the way to treat that drug, but I was told I had no choice. You could take plenty of Vit D, your NACi, and all your supplementsi. All that would probably keep you from backsliding much if at all.

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

Louise- this is a tough

Louise- this is a tough issue to be sitting with. You've done all the due diligence, but still no clear answers. I don't have much to suggest, other than I vaguely recall that Vit D itself uses liver enzymes to be metabolized, and could your high dose be keeping this elevated? The expert, Vieth says emphatically no to this:

I note one person
responding here to your query stated that liver enzymes would be
affected by high vitamin Di levels - there is NO WAY that happens! (If
anyone knows of peer-reviewed evidence contradicting my bold
statement, please let me know, because from what I have been able to
find, such liver notions are groundless). http://yarchive.net/med/vitamin_d.html
 

It's the only thing I can think of. You might want to talk to Dr. Stratton about this, as he is knowledgeable about both Cpni and the liver, and the liver in treatment issues. 

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim, at the time that it

Jim, at the time that it really rose to the plateau, I was so challenged gastrically by the doxyi that I was not even perdictably consistent with the reccommended level of Vit D3 so seems unlikely.  One unexplained cause is celiac disease, I would have to dig for the other several.  I was totally off gluten products for many years and still avoid so much more than the average person.  I had a workup once minus the tissues biopsies but my cousin (daughter of my mothers sister is confirmed as such).  I tried to load for a positive blood test but a week of macaroni and more did not do it.   I later was postive for an antibody for gliadin but I have no active overt bowel related symptoms at present and really do not want to force it to prove a point.  It's my longshot explaination for a mildly increased baseline of one of the tests, the only one preformed pre-capi start.  If I adjusted to that as a baseline than my figures would be 3 - 4 times the lab normal range.

Doxy and Clarithromycin both use the P-450 pathway for detox so I have been hesitant to switch over to it.  Roxi uses another mode and did not change the values when I started it.  I often wonder what the politics of it's non-submission for approval.  And question big Pharma supression or exorbitant application fees or process.  

I think that clari would have put me over the top sooner.  I have several months on hand now waiting for a time that I feel is right to start clari.  I am wondering if I take a break and then substitute Rifampin (unsure of the detox pathway for that medication) I might be able to take the clari.  At one point my MD mentioned plaquinil as another possible protocol, I am not clear on that as an adjunct abxi for CPni nor the pathway of detox and tendency for reabsorption.  Reabsorption is quit active with Doxy as I understand it.  I believe that I have "great" gut absorption.  That is why I stopped fdoxi entirely end of Oct.  Trying to take a half break and upping my Roxi to cover did not net me any improvement in lowered lab levels. 

Will see when the results from this upcoming lab draw if any of this manipulation of treatment plan has reduced my values.  

I did, last Dec 07 suggest that Dr Stratton would be available to my MD for consultation and discussion, I do not think that he availed himself of the opportunity.  I gave the Vanderbuilt information at the time I believe.   Thanks for thanking Dr Stratton again, I will mention it to my MD again.  Louise  

  • 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
  • <