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DaveW
Member
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Posted: Sun Oct 10th, 2004 16:58 |
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Progress after this post is presented under the main page heading: " Full Protocol plus Quercetin".
DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Viktoria
Member
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Posted: Sun Oct 10th, 2004 21:13 |
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Dave W,
What a fantastic writer you are. Your students are truly blessed to have an instuctor like you!
You are very inspiring and the way you share your observations is extremely astute and wise. I am searching for a quote to salute your contributions. Maybe I'll find something suitable one of these days!  I will follow your progress. I know you'll have really significant breakthroughs soon.
Many,many thanks for your reports,
Viktoria
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Adrenal insuff.83 Mercury-amalgam poisoning Chemical&EMF sensitivity 88. Raynaud's.ISAC panel neg but elev. fibr.CRP negative. OP.ON.OM.NICOs. Cav surg--Strep& Brucella.Ethmoid sinus inf. Vitreous detachment.Inherited transcobalamin deficiency.Neuro-trans
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Aussie Barb
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Posted: Sun Oct 10th, 2004 21:45 |
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click on > Experience of DaveW
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Sun Oct 10th, 2004 22:15 |
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Dave W says, "I also do not feel as stable on this drug...
I have cut back the dosage some, and if the adjustment to no ARB is not too great, I may just stop the MP until my supply of benicar arrives. On the other hand, if I seem to adjust to the diovan, I may continue with it as a temporary substitute."
Dave, I would support your decision to at least not continue w/mino, even if you continue to take the substitute ARB, since it prob would change the herx or prevent you from having one. Then, when you go back on the Benicar, your herxing may be stronger, if the Benicar is providing you w/a better blockade.
Would you pls include your mino dosing in your sig lines? TIA Last edited on Sun Oct 10th, 2004 22:26 by Reenie
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DaveW
Member
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Posted: Mon Oct 11th, 2004 07:07 |
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Thank-you Viktoria - You are too kind!
Thank-you Reenie. I think your advice is wise, and I will try to put my mino dose in my sig line. The only problem is, with the limited space - whenever you add something, you have to take something out!
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Reenie
inactive member
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Posted: Mon Oct 11th, 2004 19:32 |
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Dave,
If you look at some others sig lines, you'll see you can fit alot if you abbrev.
IMO, it's important to have the MP meds you take included, and it's now required to have your questions answered by Dr M and Meg.
(I see you've already included your mino in sig line, but thought it would be helpful to post this, for others reading this)
Last edited on Mon Oct 11th, 2004 19:35 by Reenie
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DaveW
Member
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Posted: Sun Oct 17th, 2004 18:09 |
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Weekly Update (Presented after my Report on Diovan)
Report on my Experience with Diovan
Last week, I ran out of benicar and tried diovan as a temporary substitute. I never did get onto a full dose of diovan long enough to adjust (assuming there would be an unpleasant adjustment period, as there was for me with benicar).
In addition to the symptoms and experiences I reported last week, I also noticed that diovan made me feel quite anxious, and even experienced anxious dreams while taking it. This anxiety made me apprehensive, and may in part be responsible for my fear to take the drug at full dosage.
I had also noticed that my (pre-MP) slight but near constant headache had returned. I also noticed muscle pain slightly decreased and a decreased sensitivity to light by my eyes.
I believe my overall herx had decreased, but the herx I did experience was different pains and symptoms, in different locations. This makes me suspect that as the nature of the blockage is different, it may permit access to different CWD than benicar.
In this light, I am considering doing a trial later in the MP (subject to the approval of our Gurus) - where I take diovan along with benicar, to see if it can stimulate herx not experienced on the benicar alone.
Closing summary - I found this ARB to be highly inferior to benicar (with a greater number of side effects). However, in fairness - I did not take it long enough to adjust to a full dosage.
Weekly Update
This week I re-started my benicar, but have been set back considerably by having to stop it temporarily (and by my attempt to substitute diovan).
I do not seem to be experiencing the same level of herx on the benicar now as I did before I ran out. I even ramped up from 33 to 50 mg of mino this week, without any profound (or expected) herx reactions.
My depression levels have increased once again <sigh>. They had been bad in my early weeks of benicar, but had abated somewhat in more recent weeks.
My appetite has also become very strong - particularly for carbs. I am finding it increasingly difficult to deny myself things like choc bars, soft drinks and ice cream. They seem to allow me to focus (temporarily) when I otherwise cannot focus, even though the benefit is short lived. After the hour or so of benefits, I then feel worse than ever.
The amount of food (of any kind) that I consume also seems to have a major effect on the level and nature of the herx I experience - with my best/cleanest herx reactions experienced when food intake is very low.
I am also sufferring from a high level of mental confusion. This one symptom seems to be untouched by the MP so far. It is staying the same, or perhaps even getting slightly worse over time. I find this quite disconcerting - as the (pre-MP) level has already affected my life significantly, and progression of this symptom would be devastating.
On the up side, my sleep is improving again - which should help. I am hoping I can re-adjust to the benicar and resume where I had left off (when my supply was interrupted). I had been progressing quite nicely.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Sun Oct 17th, 2004 19:49 |
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(((Dave))) 
perhaps when you have established your Benicar blockade strongly again, things should hopefully improve for you... this may take a while to establish properly again..? wishing you well, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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DaveW
Member
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Posted: Sun Oct 24th, 2004 17:54 |
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Weekly Update
As per last week, I am still suffering from cognitive (concentration and memory)difficulties. I am also experiencing a significant level of depression - and these two symptoms combined are making life a real challenge. (However - Note that I suspect I would feel even worse if I stopped the MP).
I am still experiencing a somewhat grey, indistinct herx - that is not as obvious as the clear and obvious herx I experienced before my supply interruption of benicar (a week ago).
I am also not sure if my cognitive and depression symptoms are part of the herx. I am actually praying they are - out of the (decreasing) hope that the MP might resolve them. Before I interrupted the benicar, I was experiencing sore throats, sore teeth, swollen glands under my chin, and sporadic sharp pains (which were clear herx). Now I experience almost none of these, but generally feel "yukky" (both physically and mentally). However, the distinct physical herx is perhaps slightly more evident than it was last week.
I still notice that eating any food seems to increase my feeling yukky, and decrease my distinct herx. After a big meal, I feel yukky (especially the next day), with all distinct herx gone. If I go without food, I feel better the next day - and the distinct herx increases. The solution may appear simple - but I am also wanting to eat nearly constantly - sometimes feeling I have to eat something just to get the energy to make it through the next hour, and to quell the distractions of "hunger" from constantly interrupting my attempts to focus and concentrate.
I am holding back my cravings to eat more - enough to be maintaining my weight, but this is still enough food to make me feel yukky and prevent my herx.
I do not understand the unusually strong food/herx trade-off I experience - but it is something I'd love to gain some insight on. In my early weeks of the MP there were no such problems as I had a very low appetite, and did not feel a need for food to "get through the next hour". Currently, I perceive this problem to threaten the very effectiveness of the MP for me.
- Hangin in there...
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
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Posted: Sun Oct 24th, 2004 21:34 |
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Hi Dave xx
good to see you back again. sorry that you are feeling so yukky.. I have had to stop my mino at 12.5 mg 3 weeks ago cos my NoIRs broke.. I continued on the Benicar but have had the yukky depressive feeling too... and sometimes sort of wondering "is anything really happening here??"
What I have always believed and what upholds me now... is to go with the flow... to trust what is happening... and when we need to do something else we usually pick up on it.
For MySelf, the inflammation is what makes me feel yukky in the gut. & if it is stirred up, something has to be happening IMO. best to you Dave, Barb.....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Reenie
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Posted: Mon Oct 25th, 2004 01:07 |
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Dave,
Your food sxs sound like hormonal shift. What do you eat and how often? Are you eating low carb or modified carb diet? It's really important to help you feel better, that you watch your diet.
I used to be insulin resistant and when I first started on Benicar, (which is what you've done again) I felt that I had to eat every 2-3hrs. 
I eat a low glycemic, modified carb diet. The last labs I had, my insulin is now within normal limits and I don't notice the hormonal flip flops like before, but still have to be careful how I eat.
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carol
Advocate
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Posted: Mon Oct 25th, 2004 04:09 |
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DaveW:
For what it's worth, I am also experiencing a change in the nature of my herx. I believe we have been on the MP about the same length of time.
Up until recently, my most dramatic herx symptoms included things that were very different from my disease symptoms. While I felt like the little girl in The Exorcist, it was very reassuring. For the last week or so, the odd ball symptoms are largely gone, and it's more like general RA-like crummy!
I need to post a progress report on all this, but just wanted to let you know you have company.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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DaveW
Member
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Posted: Mon Oct 25th, 2004 07:19 |
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Barb and Carol,
Barb, perhaps the yukky feeling you are experiencing, is similar to what Carol and I seem to be simultaneously experiencing. Perhaps there is some type of plateau that is typical at this stage of the protocol? .......and perhaps there have been others before us that can give us insight or advice?
Renee,
I tend to eat soup for lunch and mostly chicken or pork for supper meals. Sometimes when the cafeteria soup is not to my liking, I will have my larger meal at lunch -consisting of a meat entree' and the vegetable of the day. I usually skip the starch (which would be higher in carbs). Later in the afternoon I often have some fresh fruit - to hold me until supper (which is usually at 7:00 - 8:00 pm).
The above is when I am "good". But sometimes I give in to the cravings and eat a bag of chips, choc bar or a soft drink. Once this starts, I tend to need to eat something every hour or so for the rest of the day to maintain concentration levels high enough to keep working.
Thank you all for your thoughtful replies, and have a good week.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Debbie D.
Member in Phase 2/3
| Joined: | Mon Sep 27th, 2004 |
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Posted: Mon Oct 25th, 2004 17:38 |
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I have wondered if the increase in depression is also our constant focus on our disease, when to take meds, symptoms etc... for I too have had an increase in the depression. Regarding low carb snacks, I too have been doing low carb and when the need to eat things with sugar/chocolate, try subsituting the no sugar candy bars and chips. I have found several candy bars I eat daily (Ashers & Slimfast) and there are low carb tortilla chips, no carb cheese crackers, etc... which can help satisfy those cravings. Those carbs are in the comfort foods which increases the seratonin to make us feel temporarily better. The diagnosis of Sarc this year, inability to exercise and need for bedrest, has led to a 25lb weight gain...Yuk
This is an exciting and confusing journey we are on and I know that we are on a slow pace to better health. Have a great week and don't get discouraged. Deb
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Sarcoidosis/lungs,COPD, Menniers, FM, hypthyroid, GERD, IBS, depression, anxiety,diabetic,high BP, MP 1/05, Ph2 3/06, Cymbalta, Wellbutrin, ativan, Levoxyl, Antivert, Nexium, Detrol, Noir's, limited outings covered up, low lux home, 25D19
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Aussie Barb
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Posted: Mon Oct 25th, 2004 20:07 |
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I was thinking....we have this in common.... there is less light *seasonally for you ppl, & *rewearing NoIRs for me!
that would be causing a reshuffle of hormones also.. Barb....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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GPG
Member
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Posted: Mon Oct 25th, 2004 20:23 |
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| One way to help curb the cravings is to add good fats to each meal. Avocados in salads with olive oil, natural butters from almond, peanut, macadamia or the nuts and seeds themselves are very filling and keep blood sugar stable. This will help you to avoid a sharp rise in bloods sugar from a high carb snack or candy bar, which results in too much insulin production and then a blood sugar drop. This will bring on another craving. Good fats and protein with each snack or meal will keep cravings down. I don't recommend using the "lo carb" products as they are often loaded with artifical ingredients and sweeteners. They aren't really food.
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RA 17 yrs/ Started MP Aug/04 BP/100/65 Severe Herx on Benicar alone. Worse on any Minocin.
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Reenie
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Posted: Mon Oct 25th, 2004 23:44 |
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Debbie,
Check those so called "candy bars," such as Slimfast, for added D.
I recall someone saying their Slimfast contained added D, as do many meal replacement bars.
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Paula Carnes
Banned
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Posted: Wed Oct 27th, 2004 02:23 |
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Debbie, I know this isn't a support group, but...
There are amazing things you can learn only while sick and limited. You learn to live inside your head and to sustain yourself with your spirit. Perhaps use these months and years to write, draw, create, if you aren't already.
Or "pay it forward" by encouraging others as you did in your post here. I am convinced we will look back on this as a huge medical breakthrough for many, many sick people.
Paula Carnes
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Aussie Barb
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Posted: Thu Oct 28th, 2004 01:35 |
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Dave
How are you?
You may have seen but I am just letting you know that there is a new, updated version of *How to Start the MP* with much more information.
You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr.
from http://www.sarcinfo.com/phase1.pdf ....
There are other Important new documents as well.
Letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports regularly, so that we may help you to do MP with the utmost efficacy...
Thank You, & Happy MP, Barb....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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DaveW
Member
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Posted: Mon Nov 1st, 2004 05:53 |
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Weekly Update
I am finally starting to re-stabilize on the benicar, and am starting to experience a clear and distinct herx once again. I took my fourth 50 mg dose of mino on Friday. I am considering ramping to 100 mg this coming weekend.
I must admit, that when I was not herxing in a clear and distinct manner with mino alone, I used a combination of over the counter (natural) antibiotics to "kick start" the herxing - and it seemed to work. I used high allicin garlic tabs, graprefruit seed extract and oregano oil.
(Right now, I am busy stuffing a magazine down the seat of my pants in anticipation of the response this admission will engender).
I had used these natural antibiotics before I ever started the MP - and had recognized that they always did cause me some herx, as well as having helped me when I took them over extended periods. I am quite convinced they are effective against (at least some of) the bacteria I am infested with, but perceive them only as a very poor substitute for the MP (and almost certainly incapable of complete CWD eradication). Now that I seem to be back on track with the MP I will drop them, and will respect the wisdom of keeping the MP pure (as long as it keeps working for me in its pure form).
(Can I take the magazine out now? It has Martha Stewart on the cover, and somehow I just don't trust her down there!).
My depression has declined to some degree over the past few days, although my concentration still has not improved. I am once again feeling pain in my teeth and jaws, which I welcome - as I know I have an infestation there.
The longer I am on the MP, the more that I realize how important it is to understand it - to a depth that permits a deep personal conviction regarding its value and validity. Such conviction is essential to carry a patient through the many challenges it poses.
My experience would temp me to give the following advice to those considering the MP; "If you don't understand MP well, and feel a strong belief in its validity and potential - don't even try it".
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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