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Dr Trevor Marshall
Research Team
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Posted: Wed Nov 5th, 2008 18:00 |
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This may be a long road!
It is always best to be prepared for a marathon, rather than a sprint. It is easier to appreciate the improvements that way. Additionally, there is no benefit to driving the immunopathology so hard that it affects your ability to function 
Can you possibly get a copy of the D lab data from Doc's office? They will probably mail a copy to you, if you ask. There is a big difference between 40 and 140
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cjnelson
Member
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Posted: Wed Nov 5th, 2008 18:06 |
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| yes - will repost upon receipt Last edited on Wed Nov 5th, 2008 18:06 by cjnelson
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Wed Nov 5th, 2008 18:33 |
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VERIFIED VIA FACSIMILIE - VIT D LEVELS:
daughter:
1,25 - 40
25 hydrox - 28
25-oh, d3 - 28
25-oh, d2 - <4
cjn
1,25 - 72
25 hydrox - 42
25-oh, d3 - 42
25-oh, d2 - <4
Last edited on Wed Nov 5th, 2008 18:34 by cjnelson
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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Dr Trevor Marshall
Research Team
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Posted: Wed Nov 5th, 2008 18:43 |
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I am assuming that neither of you were taking Benicar when the 1,25-D levels were taken.
The 1,25-D value for cjn is a clear positive for Th1 disease, and you need to get the 25-D value down to single digits ASAP so that your recovery can commence in earnest.
The daughter has a high enough value of 25-D to be suppressing the 1,25-D, which is marginally high. The interaction between these metabolites is dependent on the overall quality of the nuclear-hormonal system, and we have to be careful to take all factors into account. Although the 1,25-D is not quite at the level which would indicate VDR failure (approx 45 pg/ml) it is very high, and I suspect it will rise even further as the 25-D drops. Luckily, since you are now on Benicar, that will prevent the 1,25-D from rising to dangerous levels.
So, that explanation's a bit wordy. But did you understand what I am saying?
Best to keep a watch on the 25-D levels (only) every couple of months.
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cjnelson
Member
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Posted: Wed Nov 5th, 2008 18:57 |
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First I wish to thank you for taking to the time to respond directly!!!!
Actually we had both been on Benicar approximately 1 month when levels were taken.
My understnading is that CJN - me - is definite for TH1 and I need to get my 25d levels down. Also from researching I am marginal for some dangerous territory!? A bit scary to say the least!
My daughers explanation, I am sorry to say but I dont fully comprehend!!!!! Several months back, June or July, her 25d level was 17 and her c-reactive was HIGH - 3.5. that is what sparked my research and found MP. So her levels have climbed.
Last edited on Wed Nov 5th, 2008 18:58 by cjnelson
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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Dr Trevor Marshall
Research Team
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Posted: Wed Nov 5th, 2008 19:01 |
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OK, well I can make the explanation easy if you were both on Benicar, which significantly depresses the 1,25-D value. In this case your daughter is also clearly positive for VDR dysfunction, Th1 disease.
You would also want to keep an eye on both of your metabolites just before you decide to start Phase 2. You may want to suggest Doc uses Modified Phase 2 at that point. But let's not jump hurdles until we come to them
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cjnelson
Member
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Posted: Wed Nov 5th, 2008 19:07 |
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Very good. We go back in mid December and if all goes well we should be stepping into Phase 2. But we are both willing to temper it down if we need also. We will discuss modified Phase 2 although I dont know the difference at this stage.
Thank you again.
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Fri Nov 7th, 2008 14:03 |
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My immune response / symptoms are too strong. What should I do?
This is not available to us. How can I get this information as I have had a few really tough days when increased to the 75 mg....
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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Dr Trevor Marshall
Research Team
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Posted: Fri Nov 7th, 2008 15:14 |
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That FAQ seems to have been superseded by this one:
http://www.marshallprotocol.com/view_topic.php?id=10371&forum_id=32
"How To Manage Immunopathology"
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cjnelson
Member
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Posted: Wed Nov 12th, 2008 00:01 |
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My daughter is up to 75mg but I am having to do 62 to see if I can tolerate the IP better.
Question...my symptoms get worse when there is rain coming in and has for years. Today has been very bad symptom day. Any idea as to why this is??? Is this common with Th1?
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Fri Nov 14th, 2008 00:55 |
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Well here is another thing that I have not been able to "deal" with.
My 11 year fell ill this past summer, in June - very high fever and flu like symptoms - and due to some of her complaints (she said it felt like she had water flowing through her hands and then said it felt electric sometimes) I insisted she be tested for Lyme.
She came back CDC positive IgM with bands on IgG and her ELISA was positive (see attached test results). She was (reluctantly) treated for 2 weeks on amoxicillin.
Three months later in September - she had an infection on her leg (see attached pictures) and it was diagnosed as MRSA but it could have been a bulls eye in my opinion and was treated for 14 days with minocycline. (I dont think the dr wanted to admit it was a bulls eye due to his "attitude" of Lyme in the first diagnosis)
The next month she came down with another high fever for 5 days.
The following month she came down with another high fever for 4 days.
We are in the 1st month with no high fever now.
Otherwise she is generally healthy besides constant sinus drainage which she has had all her life.
She plays soccer. She goes outside almost every day. She goes and goes.
Occasionally she complains of her knee or ankle hurting or a weird feeling like the other day when she said something felt like it "popped" in her side - like a weird movement. Occasionally she gets a headache. Occasionally she has days of fatigue. She will mix up words in sentences or forget them when she tries to say them at times, but not often. She gets very irritable and emotional at times.
Last year her grades were struggling but this year so far she is doing very well. And she actually has less symptoms this year than last???
Her latest fatigue day was Tuesday morning. She went to bed on time, at 9:30, and slept through the night, waking at 7:10. When she woke she said she couldnt get going and was so tired and looked very washed out. She climbed in my bed and slept for almost 3 hours longer and was drained the rest of the day. Then she bounced back again.
I am afraid that I am in complete denial when it comes to her and I am afraid that she is going to drop down again and one of those times not come back up or that it is just building and building in her system and one day she will become so ill.
I am scared but dont want to face it either. I am also concerned that I might be reading too much into it because of Andrea and myself.
I am attaching her IGENEX report and picture of her leg in July.
Any feedback????? Do you think I should have her D panel done? What about a C-RP?
Last edited on Fri Nov 14th, 2008 01:25 by cjnelson
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Fri Nov 14th, 2008 16:48 |
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Tough day today for sure.
Woke this am with terrible neck pain. Muscles are so tight and HURT!!!! My shoulder is now hurting into my arm, peripheral neuropathy kicking back in. My sinsus are draining an dI am sneezing. had chills this am too. I feel terrible and this is at 62.5 mino!
I am getting sores on my face, like pimples, but not pimples. They hurt!!!
Spasms/twitches in my face have kicked up too. In places I havent felt in yeras!!
My head hurts.
I slept through 2 alarm clocks this morning and woke feeling as though I had NO sleep at all.
When it was time for my 11am benicar, i knew it without looking at the clock too. I FELT it!!!
Herx - IP - is strong today!!!
This is about 2 weeks at increase of mino....in past 7 days reduced to 50 once, 62.5 three times. Maybe in a few doses will try the 75 again but for atleast 3! 
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Fri Nov 14th, 2008 23:37 |
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The day has not gotten too much better. I ended up with stomach pains this afternoon and has gone into the evening.
My neck still hurts really bad. And have intermittent headaches throughout the day. I have also had an odd taste in my mouth which hasnt been around for some time!! My facial spasms finally stopped...hate those and my node in neck seems to be better this eve.
Hands are still very cold!
daughter felt terrible all day as well...stomach, nasuea, major fatigue and complaints of cognitive issues. Very irritable!!
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Mon Nov 17th, 2008 02:58 |
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Ended up fevering starting Sat am around 3:30-4am....went through this am. First time I have had fever in a long time and night sweats too. Sat am was real bad!!!
Yesterday spent most of day sleeping and today was more resting. Still feel "off"...
Daughter had some vomiting spells return this weekend.
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Sat Nov 22nd, 2008 01:39 |
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| We have the flu going through our house and i am wondering if there are any changes we should implement during this illness??
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
| Status: |
Offline
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Posted: Sat Nov 22nd, 2008 16:27 |
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CJ,
I would worry about this pattern. You might want to google on 'tick borne relapsing fever'. I had such a pattern about 25 years ago, which was when the sarcoid started greatly interrupting my life. (disclaimer, I am not a doctor)
The next month she came down with another high fever for 5 days.
The following month she came down with another high fever for 4 days.
The pattern is that the fever comes back every 30 days or so, but spreads out and gets lower each time. For me, it eventually became like a permanent low grade fever, like 98.8 to 99.4 or so. The docs would say that was within normal, but I always felt lousy if it wasn't 98.6.
Your mileage may vary. Hoping I didn't cross the line into medical advice.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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cjnelson
Member
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Posted: Sat Nov 22nd, 2008 21:14 |
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Well interestingly enough, she started with fever Thursday, 11-20, went up to 102.7 highest and lasted for 24 hours, then nothing. I thought for sure it was the flu but not! Fatigue, major headache and body ache, fever....then nothing!
Interesting...sometimes we just have to write stuff down and watch for patterns.
June 9-14 - high fever, flu like- 103.6 highest
June 18 - CDC Positive for Lyme on IgG
July-August - dont recall anything specific
Sept 15-27th +/- "sore" dix as MRSA by one dr, suspect insect bite 2nd dr, could have been EM with no central clearing - with fever - 102.8 highest
October 2-5 - Fever 103.2 highest
nov 15-21 - Sore on chest under arm/bra line - dx insect bite 1 dr, molluscum contagiosum 2nd dr - there was no clearing
Nov 20-21 Fever 102.7 highest
will just post for now and watch patterns...not sure what else to do!
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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cjnelson
Member
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Posted: Mon Dec 8th, 2008 16:19 |
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Well, we made to 100mg now for going into 2nd week successfully and able to maintain at this level.
It was a hard jump for me but seemed easier for my daughter. She experiences IP but seems to handle it much better than I - youth!!?? Could be on her side for sure.
I recently watched the Under Our Skin DVD and in it Dr Alan McDonald talks about biofilms discovered with Bb. I have read a bit about them and understand biofilms now, more than I ever wanted to know!  , but wonder how the MP addresses biofilms.
From my understanding, Zith does get to and break down biofilms but wondering if this is accurate and what else can be relayed to my research on this issue. It seems viable reasoning for the chronic persistence and relapses.
Any info would be appreciated!
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
| Status: |
Online
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Posted: Mon Dec 8th, 2008 17:12 |
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| This info about antibiotics and biofilms seems relevant to your question: Low doses of antibiotics more effective
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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cjnelson
Member
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Posted: Mon Dec 8th, 2008 17:22 |
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What is the benefit of doing a Modified Phase 2.
After understanding more about biofilms it seems this may be a big step in treatment. I dont want to side step the inevitable. I also dont want to push to the point of non compliance and stopping.
So what is truly the benefit of putting the phase 2 off??????????? I have to do it eventually!
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CJN-40: Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS: LITTLEANGEL-17, Lyme & Bart or myco: bipolar, ocd; obesity; Ph1 7/08, tinted windows in car, clothing & NOIRS for light protection; other daughter- Lyme CDC 6-08 -age 11
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