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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Sun Aug 24th, 2008 20:51 |
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Shari,
I'm definitely on the carnivore side of things, and do not worry about the cholesterol in my diet. The body is pretty good at picking and choosing what it wants from what you eat, at least a healthy body is.
Cholesterol in the blood stream is controlled by your body, it isn't a simple reflection of your diet. Dr Marshall makes the point frequently that the body is just not at the level of simple high school chemistry that folks who push akalinity or anti-oxidants or other simple remedies. If you want an example of such simplistic thinking, try thinking about the 'you are what you eat' mantra and then about how even vegetarians are made of meat.
My cholesterol had started up 4 years ago, but stopped going up and has slight slightly down during the MP. I'll know more at my next Dr appt in October. When I'm not lazy in the morning, it's meat 3 times a day.
I worry more about the bread I have with a BLT than the bacon.
(Chris, You need to worry about the bacon because it is very high in vitamin D. All Pork fat is really high and needs to be avoided until your 25-D level is too low to measure. P. Bear R.N.)
I can suggest a NJ restaurant that does pretty good duck with blueberry sauce. It is good enough to make you stop worrying about the fat it carries.
-- Chris
What should I do about my high cholesterol and/or triglycerides?Last edited on Sat Oct 11th, 2008 08:41 by
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Shari Gold
Member
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Posted: Sun Aug 24th, 2008 22:14 |
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Thank you Chris for chiming in for us meat eaters! I am certainly not cutting it out completely, rather I wanted to know if others had experience w/ meat consumption and less IP?
I know that my cholesterol is unusually low, but ... I eat at least one serving of meat protein a day (this wasn't including eggs ... which I ate all the time/ w/ yolks pre MP). My 25 D pre MP was 20 and my 1,25 D was 58 ... so my rational on that was that was al ot of my cholesterol from diet was being up-regulated into 1,25 D. I also live in the land of sun (Los Angeles) and loved to wear flip flops and tank tops and feel the warmth on my skin ... all pre MP.
At any rate, I am just trying to gage what is okay and I guess I will just have to take it day by day because I am realizing we are all so different in this process. I tend to not be as light sensitive looking at computers etc ... but the days can vary. I am light sensative if I get to much sun outdoors though.
Also... I read your story on Bacteriality again ... that is wonderful for you that your Diabetes is gone .. I am guessing you are/ were Type 2. My daughter is Type 1 and has been since the age of 3 ... she is 8 now. I have hope that when my daughter is old enough and I myself have my own health back that she can start the MP. Hopefully by then... there will be more people who have successfully turned their diabetes around through the MP ... and I am hoping to read such a post from a Type 1 in the future.
Thanks again... best, Shari Gold
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Shari Gold
Member
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Posted: Sat Aug 30th, 2008 22:24 |
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Hi again...
It has been a few days since my last post and I wanted to share a few experiences and ask a few questions.
The best news to date is that I have noticed some problems resolving. The most exciting to date is that prior to starting the MP, I had a mass in my left breast. I went to see an oncologist and had an ultra sound b/f I began the protocol. The mass had been steadily getting larger and more tender for the last six to eight months ... and looking back, I know the tissue had been inflamed for a while. What made it really kick in and get worse was around xmas last year... I rented an infra red sauna .. and I was bathing in it almost every day for about 30 minutes for about a month and a half. Now I realize, I was having terrible reactions to it... head aches, muscle aches .... and just chalked it up to the "mercury detox" I was doing. Well ... the mass had been there ever since my 2nd child and breast feeding that ended w/ a plugged duct .. and I believe now, the sauna is all that it needed to grow. I believe the Th1 pathogens had created some scarring in there and were slowly covering new ground. My adding the Far IR sauna just gave them the juice they needed to really grow ... so ... while my ultrasound came back normal .. prior to starting the MP, I still had this feeling of dread in the back of my mind, but decided to shelve it and plow forward with the MP. Now the tissue is shrinking  and the breast is becoming normal again. I would say it is 50 to 60 percent smaller -- yea!
Another fantastic developement... my husband, who has been the biggest skeptic .. is now changing his tune. It turns out... his boss has a friend back east who has a son who was diagnosed w/ Lyme a while ago. This young man and his father went to see all the best "lyme docs" back east. "Guess what he is doing?" my husband tells me .... "The MP," I say. "Yes." ---- Bingo.... so I haven't had a lot of push back lately from him to say the least. And, these little victories in my progress have been a nice validation as well.
So far, my IP's have been very manageable. The worst one I have had yet was around the beginning of my period. I miss calculated the day I would begin by about 5 days ... (usually I get night sweats 3 to 4 nights before I start ... and miraculously, that has been going away) ... so.. I happened to up my dose of minocycline around the first day of my cycle. LOOK OUT ... I had such pain in the pelvic/ uterus area. It felt like contractions! I frantically searched the site trying to find out if ibuprofen could be taken. I couldn't find anything in the medications list about it, but not wanting to veer from the MP, I chewed up my next does of benicar and held it under my tongue. Within 30 minutes the cramps subsided. The rest of that day, I did get some other crampst etc... but I just kept up my 4 hr. Benicar schedule the rest of the day and got through it.
Now... I can happily say, I am tolerating a 75 mg dose of minocycline at this point and I am just a few days shy of my month anniversary on the MP. While reviewing the MP Phase 1 guidelines (which is really important to do... often) I reread the part that mentions that Phase 1 lasts about 3 months. Obviously, this isn't set in stone, but the way I am interpreting this is that as I ramp up to 100 mg of mino and I get less and less of an IP, this signals that I am ready for phase 2? And... can I still request the questionaire as a prelude to phase 2? And one other question, I did fill out an application to be a part of MP study, could I still be eligible or does the MP study site admit participants that are beginning phase 2 as well?
Thanks for all the input and here's to making progress!
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Julia
Advocate (on leave)
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Posted: Sun Aug 31st, 2008 00:56 |
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Shari,
That's great news all round! And well done for learning to manage the MP for yourself. You'll probably find that you get more IP as your 25-D level drops to the required level. Make sure you get it tested again fairly soon.
The study has taken phase 2 members, but it's so full at the moment that you're unlikely to get a place.
Your doctor has access to the phase 2/3 guidelines in the Professionals' Forum, so you could ask for a printout.
Happy herxing!
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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Shari Gold
Member
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Posted: Tue Sep 2nd, 2008 19:34 |
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Hi again...
I have a friend who is back east and is helping her mother try and get an official diagnosis. I have suggested the MP and they are interested.
I would like to request the DOCTOR'S LIST for my friend's mother. They live in Atlanta Georgia.
I have tried to get my friend online, but she is very overwhelmed w/ her mother's health situation and running from specialist to specialist and has limited computer time right now.
Could I get the DOCTOR'S LIST to forward to my friend. I am getting her up to speed with the info as quickly as possible. She is in town w/ her mother until the end of the week so we are hoping she could at least get an appointment and get scheduled for her D metabolite tests.
Thanks!
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Julia
Advocate (on leave)
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Posted: Tue Sep 2nd, 2008 23:17 |
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| Please post in the REQUEST FOR DOCTORS LIST.
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Always consult a physician
Essential Info; FAQ; Julia's story
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Shari Gold
Member
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Posted: Wed Sep 10th, 2008 18:39 |
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Hi again...
So I have been living and herxing along over the past few weeks. Things have been pretty tolerable up until a few days ago. I was just reviewing another person's thread on neuropathy. My latest herx was been a long, slow burning neuro herx, which was pretty exciting.
The neruopathy symptoms have been the bulk of my health decline over the last three years. All my peripheral nerves innervating my shoulders, back muscles and down into my arms (sort of carple tunnel area) as well as my hips have been steadliy getting worse. The herx was sort of a magnified feeling of the neuropathy is the only way I can explain it. I typically experience this at the tail end of my abx dose (sort of right before I take my next doese at the end of the 48 hrs).
I am just wondering if this is something others have experienced. I was re-reading the neuro IP thread and there was a lot on there about brain fog and muscle twitching etc... just wondering to what degree others have had this same "slow burn" experience.
Also, I was taking the Benicar during this period every 4 hrs to get through it, which really wasn't doing much to mitigate the pain ... what seemed to help was the next dose of Abx. So .... just wondering, if I am killing off a lot of the bugs at this time (yes I am in a little pain) should I just ride it out to sort of maximize the bug killing a bit more b/c it seems to be a the lower doses of abx in my system that I have the most profound neuro herx ... is there a scientific/ physiological reason for this .. ie lipid penetration or something?
Anyway... I am very happy that I am getting validation here ... and I really do hope to see some positive turn around soon. This isn't fun .. but what keeps me swallowing my abx day after day is I know there are less bugs with each and every dose.
Best,
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Julia
Advocate (on leave)
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Posted: Thu Sep 11th, 2008 00:32 |
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Shari, please see What should I know about Minocycline?
Are you following the MP recommendations on reducing daylight and eliminating vit D from your diet?
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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markt9452
Member
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Posted: Thu Sep 11th, 2008 00:57 |
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Shari - Your "slow burn" is a good description of my IP when the antibiotics and antimicrobial substances transcribed by the VDR work on my nerves. Some of my twitching and parasthesia got pretty bad for awhile and then almost went away completely.
I think it means that the treatment is working and the bugs are getting killed. I don't worry about it to much as all my symptoms are improving and I guess that's the price.
I usually try to ride it out as you stated to maximixe the bug killing or I'll take a little extra beni if I have to. It always goes away after awhile which is good to know because I wouldn't want to be like that all the time.
The lower tissue levels of antibiotics do seem to provide some extra herx towards the end as they wear off. I think it's good for you though as long as your IP is tolerable.
Your really going to have to watch the sun exposure now to keep the neuro IP to a minimum.
Sounds like things are going well for you.
Good Luck with Phase two.
Mark
Last edited on Thu Sep 11th, 2008 01:01 by markt9452
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Th1 Lyme vertigo fatigue brain fog skin lesions tinnitis 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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Shari Gold
Member
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Posted: Thu Sep 11th, 2008 00:59 |
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Hi Julia,
Thank you for the link on Minocycline ... that helped to read through again. I suspect that the die off is greatest at the end of my dose based on the information of minocycline 1/2 life. Today I took my next dose of abx right at the 48 hour mark. It is about 5 hrs since then and my neuro flare has really lessened.
Yes ... I have been avoiding sunlight and all vitamin D -- like the plague. I am one of those "really compliant" MP'ers that gave up all the no no's and never looked back. When I do have to go out in the sun ... I am covered up head to toe (dark tight knit clothing, gloves, wide brimmed hat and noirs).
Thanks,
Shari
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Shari Gold
Member
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Posted: Sat Sep 13th, 2008 00:44 |
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Hi Mark,
Thank you for the neuro validation on your end. Yeah, that slow burn feeling is something I am really happy about ... although, I really hope someday to be rid of the neuropathy altogether. I just can't believe how bad it has gotten. This has been coming on for me for the last 10 years ... where I know I can pinpoint the beginning, progressive symptoms of my polyneuropathies.
I do get the intermittent twitches and myoclonal jerks much more now. That was one of the first indicators back when I started to enter my more chronic stages of lyme disease. I used to have fasiculations and myoclonal jerks much more so. Then, they started to decline as did my muscle tone ever so slowly in my back. Now I'm getting the jerks/ twitches again at the end of my abx dose, which is really encouraging.
I actually just received my phase 2/ phase 3 guidelines from my physician to begin reviewing. I am probably in the middle of phase 1 and looking to increase to 100 mg mino soon. Where are you at this point in your MP? And would you say that your neuropathy is getting better? How would you qualify (ex: less pain, more stamina, more muscle?)
Also, if you are in phase 2 or further ... did you have to modify anything in terms of your neuro herx? It really is exhausting when it hits, thankfully, my kids are at school during the day and I don't work so I can rest .. which I did most of this week.
And I know what you mean about staying out of the sun to avoid the negative effects of the neuro IP. I had a lovely headache the other night because I had gotten too much sun while running some errands and picking up my kids from school in sunny Los Angeles
Thanks for your encouragement ... and I hope you are progressing well on your MP journey too!
Best,
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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markt9452
Member
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Posted: Thu Sep 18th, 2008 11:59 |
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Hi Shari
"Where are you at this point in your MP?"
I'm about to go the max amount of phase 2 ABX
"And would you say that your neuropathy is getting better? "
Yes it is Shari - slowly but surely my nero symptoms are all resolving. The moments of clarity and coordination are becoming more frequent and lasting longer. Just before I got on the MP my twitching was getting out of control - especially if I was experiencing emotions. It was quite frustrating for me because what I was thinking and how my body was reacting to a given situation didn't match at all. That particular symptom is mostly gone now.
I think it's important to understand that things just don't get better or go away. There is a process that is quite consistant with me in which a symptom gets worse before it gets better. There is also the phenomenon in which issues that I wasn't aware of are revealed by the protocol. I imagine these would be things that would have been health issues for me in the future that I just hadn't noticed yet.
Just recently - within the last two weeks I am experiencing increased physical stamina and an increase in muscle mass. I walked about 7 miles yesterday without any problems other than a bit of sun sensitivity and my legs were a little sore. No problems with my knees at all. The bottom of my feet used to get really sore from even a little bit of walking and that is a lot better now to.
I'm not quite ready for vigorous excercise yet - as it causes me to herx - but I do have a goal to be playing ultimate frisbee by next spring - we shall see.
Probably the biggest thing is that I'm not walking around angry all the time anymore - I'm still a bit edgy but nothing like before.
"Also, if you are in phase 2 or further ... did you have to modify anything in terms of your neuro herx? "
Not really - I have decided to follow the protocol guidelines very strictly in regards to sun exposure, diet and meds. There was some degree of trying to stay away from potentially confrontational situations and drama. Just being aware of the concept of neuro herx helped me to realize when I was experiencing it - although there have been times when it was after the fact. It's a learning process for me.
Hang in there Shari and good Luck
Mark
Markt's progress
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Th1 Lyme vertigo fatigue brain fog skin lesions tinnitis 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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Shari Gold
Member
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Posted: Fri Sep 19th, 2008 11:14 |
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Hi Mark,
Thanks so much for your reply. I had a chance to review your personal progress. We have some very similar problems -- eerie. Maybe we picked up the same strain of Lyme or something.
What you described about your arms falling asleep is me to a T. I have that often. I usually go to sleep hugging a pillow to try and prevent it. It started about 4 years ago, right before my acute neuropathy attack ... went to bed one night, awoke w/ numbness that subsided in arms, but an excruciating pain in my left shoulder that sent me to a nerologist. An MRI turned up nothing and then I had a few months of unhelpful phyicial therapy .. then just stopped going altogether. While lying on my side, I could not lift the affected arm at a 90 degree angle - no weight bearing external rotation. About 9 months later, went into a sports medicine guy who looked at my back and pronounced I had nerve damage. The fossa where the infraspinatus was concave at this point. Went back to another neruologist, this guy bigger and more diplomas on the wall, and he dubbed it "Parsonage Turner Syndrome" .. great! We all know how the story goes. That left arm has about 80 percent use back .. I am really hoping for 100 percent .
Also .. your eustacian tube and jaw herx are definitely something I am experiencing. It wasn't until I read your description of the flutter in your ear... did it even dawn on me that that wasn't just part of life! I have that all the time and that is the ear that I have been having the herxing/ ear pain in. Wow.
I did up my mino dose and I am now on my 3rd dose of 100 mg mino. The first dose, not so exciting ... but the 2nd dose, look out . I feel much better now. Hopefully tomorrow won't be so bad.
I am looking forward to phase 2 and have been reading the guidelines. I only hope that my poor fogged brain can keep it all together when I get to phase 2.
Congrats on all your progress ... and I know what you mean about feeling calmer, less irritable, and sort of having to learn things a different way ... as others have described. I am already feeling the benefits of that so early on ... I am really looking forward to what I will officially consider my "rebirth" after 19 years of being trapped in a state of sickness!
Best,
Shari
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Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Fri Sep 19th, 2008 13:43 |
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I am really looking forward to what I will officially consider my "rebirth" after 19 years of being trapped in a state of sickness
And it's this feeling that can keep you going through the MP. I still feel that way after 4 years. I don't want to accept compromise with any bit of sickness anymore.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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markt9452
Member
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Posted: Fri Sep 19th, 2008 19:01 |
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Shari I'm not suprised about the common symptoms. My Lyme diagnosis is as a result of having every symptom of Lyme including the weirder stuff like Bakers Cysts behind the knees. I haven't had my blood tested for Lyme as I feel it's all Th1 anyways and Lyme is just a term that people are more familiar with.
This is just my opinion but if the Th1 inflamation is a result of a soup or stew of different kinds of bacteria - I think that there are different flavours of these soups or stews - one of them being Lyme. Again that's just my opinion so don't be surprised if one of the moderators has a different angle.
I also think that all these flavours if not treated with the MP eventually end up turning into sarcoidosis with the associated granulomas and other fun stuff.
BTW - the fluttering ears are 99% gone now. Much easier to sleep. My ears are still healing and I have a long way to go but it's been slow steady progress so far.
I think that's a very good sign in terms of your long term success that you are allready seeing improvement. Slow and steady wins the race.
Mark
Last edited on Fri Sep 19th, 2008 19:16 by markt9452
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Th1 Lyme vertigo fatigue brain fog skin lesions tinnitis 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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Shari Gold
Member
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Posted: Sat Oct 11th, 2008 00:06 |
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Help!!!
I just got my 25D test results back and I actually went up!
D-3 is at 27 ng/ml
D2 is less than 4 ng/ml
When I originally tested, I was at 20 ng/ml (25D) and 58 (1,25 D). What am I doing wrong. This might explain why I feel like I have plateaued on my mino. I am at 100 mg Mino for the last month and was getting ready to progress to phase 2.
Could this be high from meat consumption? I cannot see where I would be getting it elsewhere. NO BUTTER, NO MILK, dont eat bread (can't) ... I have such a limited diet does it need to be more limited? Aside from skinless chicken, I eat egg whites. Uggg!!!!! Really frustrated right now. I am such a protein type person and I really feel a little down about this. Wasn't expecting that number at all!
I have been on the MP for about 2 months now and was just starting my 3rd month.
I would really appreciate any guidance on this!
Thanks,
Shari
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Sat Oct 11th, 2008 05:15 |
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Shari,
It could be coming from stored deposits. As the benicar helps remove the 1,25D, the body will release 25D to try to restore the 1,25D levels.
By any chance are you losing a bit of weight? That also might release whatever was stored in the now missing or reduced fat cells.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Shari Gold
Member
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Posted: Sat Oct 11th, 2008 19:38 |
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Hi Chris,
Thanks for your response. Yes, I have been losing some weight, about 5 pds or so since starting. I am hopeful that that is contributing to the number.
I did go back over the last week and see if anything could have snuck in there and low and behold ... I had seaweed paper. Which now, looking back over the list, I realize is a D source.
My point jump wasn't really high ... so maybe it is a combo of losing the weight and the sea weed paper.
Sheesh ... I have been so diligent (or at least I thought) ... so careful w/ eating and then of course when going outside to pick my daughters up from school, I am covered head to toe.
I know it is a small set back .... I will move forward and just focus on getting it down. And hopefully, as my weight stabilizes and the D stores are depleted in my body ... that number will get down to the teens.
Thanks,
Shari
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Shari Gold
Member
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Posted: Sun Oct 12th, 2008 01:56 |
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One other question in reference to what Chris was mentioning ... the 25 D being released in response to the down regulation of the 1,25 D from the Benicar.
I did not have my 1,25 D checked b/c as noted in my reading, that number fluctuates or can fluctuate rapidly.
At some point, is it beneficial to have this number rechecked as well. Obviously, it would be interesting to see if the 25 D was up and my 1,25 D was down.
I am not planning on another round of blood test for probably another 2 months, but just was wondering when or if it would be useful?
Thanks,
Shari
____________________
Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58
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Chris
Advocate
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 200 |
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Posted: Sun Oct 12th, 2008 03:57 |
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Shari,
Further 1,25-D level tests aren't useful. The 1,25-D levels fluctuate a lot, once you start taking the benicar.
From: How often should I test D levels?
"Once you have measured an initial high 1,25-D value then you know that you have poor Vitamin D regulation and that's really the main thing you needed to know. There is no need to recheck 1,25-D after you begin the MP."
...
"1,25-D will ebb and flow during your MP therapy, depending on immunopathology, mainly, so it doesn't tell you a lot."
-- Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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