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Marber144
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Posted: Fri Apr 18th, 2008 16:41 |
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Hi ~
I'm waiting to see my MP MD this Tuesday. Yes!!!  I found a doctor to help me on MP!!! Dr H has treated 4 others on MP & was on the list given me by P Bear (Thanks!). I received 2 "NO"s from local MD's. Although Dr H is across our tiny state of CT – that is fine.  After only one visit - I can tell he’s a very knowledgeable & caring doctor. That is a huge hurdle crossed, already…
I have 2 questions, as I wait for my second appointment to see my "Dr H" this Tuesday.
1. Due to discontinuing lyrica and increasing cymbalta (to compensate for neuropathy pain in both feet) - my BP went sky high. Even though I have had stable (even low) BP on 80mg of Diovan, it now requires 320mg, and my BP is still around 140/88. That is even after backing down the cymbalta from 120 to the original 60mg. Also, Diovan & Benicar are the same class - so should I try & switch to a different (non ARB) BP med - before starting MP? I’m not sure if I should be on 2 ARB’s – Diovan & Benicar - as I begin MP?
BTW, I cannot begin MP until after I help drive our daughter drive home from Houston (getting home to CT the end of May). Unless I can find a Sub driver. The delay does allow me time to make med changes. And, would a BP med change be advisable – with the upheaval when I increased cymbalta from 60-120mg. I had pretty bad side effects: various GI sbx & pounding headaches - for a week until I realized they were side effects. Both symptoms occurred when I initially started cymbalta 18 months ago.
2. At the end of my initial visit with Dr H, he expressed concern about my severe cervical degeneration - at 2 levels. I had planned to start MP & then take care of my stenosis later... Now, I'm not sure which I should do first - MP or surgery? Some background info...
I’ve spoken with two very good neuro-surgeons (Dr H told me he is friends with one of them). Although; that may be quite a delay (surgery first) due to all the red tape involved with my Ins Co - regarding spinal surgery. One neuro-surgeon has told me it could take a couple of months to just get approval, followed by schedule timing. The second surgeon's (Dr H's friend) timing is determined by trying to fit me into a new disc Clinical Trial -which keeps being delayed. Dr H’s hesitancy in starting me on MP could be due to this DDD (cervical spine). He said he wanted to go thru my stack of tests, MRI's, CT scans, DEXA, etc. Cautious & thorough are good traits...
CT SCAN – without contrast - 8/07
"General Findings: Diffuse disc narrowing w/ reversal of normal curvature."
"At C4-5 Mod unconvertebral arthropathy w/ Mod R neural canal stenosis."
"At C5-6 Mod disc osteophyte complex w/Mod R & Severe L unconvertebral arth w/ Moderately Severe central & Mod R & Severe L stenosis."
"At C6-7 Mod disc osteophyte comp w/ mild bilateral unconvertebral arthropathy w/ Moderately Severe central & mild L neural stensis."
The neuro-surgeon (involved in the Trial) would either fuse or put in disc replacements, if enough healthy bone remains, at C5-6 & C6-7 – my most immediate spinal problems. I could pay for the other neuro-surgeon to put in an already approved disc & my Ins Co may pay for everything but the disc, itself? I would prefer the 2 artificial discs instead of fusions. But, depending on the extent of bone damage, I may not have a choice (with either neuro-surgeon  ) & will have to settle on fusion.
Of course… Arthropathies are due to Inflammation. One more piece to my puzzle. And, many others with Chronic lyme, etc.
**A delay in starting MP and doing spinal surgery first – creates another problem – the reason why I have delayed surgery for a year, already. During lyme IV abx treatment during 2000, I became allergic to two major classes of antibiotics…penicillins & cephalosporins.
IMO, it seems that if I start MP & progress somewhat – then I could take a break from MP to have spinal surgery??? ~ Maybe this fall? Has that worked for others? Then, I could return to MP?
I am very concerned about even entering a hospital now – with my lack of antibiotics to use for any infection! It is very reassuring that MPers have experienced a loss of allergies. Due to my over-use of Zithromax, does that mean that I may have a problem when I get to that point in MP? Guess I should cross that bridge when I come to it…
I’ve read many of the links regarding antibiotics, hypertensives, etc – but am not sure what to do, since the links do not relate exactly to my situation. Please advise. It is wonderful to have you all, who have gone down this road ahead of me.
I'm trying to prepare for the follow-up with Dr H on Tuesday - regarding the timing of my start on MP. Chronic Inflammation certainly wreaks havock on a body!
Thank you ALL for the Great Conference CD's 2005 & 2006! You came to life after reading your success stories!! There is Hope! No matter how far down the Road we've gone. Watching them has really helped my husband relax, some. He has been a Godsend, but has trouble talking about my long illness.
Martha
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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JRFoutin
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Posted: Fri Apr 18th, 2008 19:27 |
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Martha,
Welcome. Glad you found a doctor to work with. That was a HUGE relief for me when I finally got that barrier down. Emotionally, it was a relief, I knew I could get well then. Good for you!
Per your questions:
1. Medications to Avoid While on the Marshall Protocol
Diovan HCT is listed there with clarification. This is a good page to print out and keep handy when you visit your Doctor. more information on Diovan
2. Back pain link in PAIN CONTROL thread: see Dr Greg Blaney MD wrote, regarding herniated disc.
You can always follow your surgeon's recommendations, but if it was my bone in my back, I would avoid surgery and try the MP first, especially since I know Th1 is not bone friendly.
From my experience with my husband's back problems -- from only a consensus perspective of back problems (no Th1 in discussion) -- our chats with several Drs helped us see that surgery is more 50/50 outcome with about half feeling back surgery helped or didn't make things worse, the other half were worse off. That's a non-MP consensus perspective, so even if I didn't know anything about the MP I would be cautious about back surgery, no matter what newage gadgets are available to the surgeon.
Remember too, a surgeon sees the world through the invasive, accute-action surgery solution set. Molecular Genomics currently doesn't sway that perspective much either.
Many have worked through back immunopathology on the MP.
Will the MP treat paresthesia and neuropathy?
Best to you Martha--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Marber144
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Posted: Fri Apr 18th, 2008 20:24 |
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Thanks for the response and the links, Janet!
I can't tell you how happy I am to find a doctor to help me with MP!
I had seen Diovan on the Medication list - but the one listed is "Diovan HCL". I don't take the one with the diuretic, hydrochlorothiazide, in it. So... am not sure if my - plain Diovan - is okay?
It was after telling Dr H that I felt that MP would help this stenosis problem - that he responded; "Do you think it wll correct it?" I have read about the collogen and how Th1 inflammation weakens it. I was always puzzled about a very simple ski accident I had in 1998 which resulted in 2 major ligaments in my L knee being completely torn & the ACL stretched. My knee was basically dangling - after a slow turn at the bottom of the mountain, after 4 days of fun skiing! The puzzle pieces are coming together...
When I see Dr H on Tuesday - I will just be firm that I want to start MP & NO surgery. I know MP will not return my spine to perfection, I just want the inflammation to leave - along with the pain and lack of movement.
Your response prompted me to think that I will need a doctor to help me with pain management. I've never taken an opiate, but know 2 pain specialists. Do the MP doctors usually handle the pain meds, too? Guess it depends on each MD?
Thanks again, Janet. You are ALL inspirations.
Martha
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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JRFoutin
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Posted: Fri Apr 18th, 2008 20:40 |
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Martha,
Remember to look at this link for more information on Diovan .
If your question was mine and I was reading that information, I would come away with the distinct impression that Diovan (valsartan) is not going to help more than or be needed along with Benicar, and it actually isn't as capable to help work the problem as Benicar alone is.
I would also seriously encourage my physician to join the Private Section for Health Professionals, because that would give my physician access to insights directly from medical professionals and Dr Marshall about my situation.
But that is just my opinion of how to work the system in my favor (smiles).
Best to you Martha--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Marber144
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Posted: Sat Apr 19th, 2008 00:41 |
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Well it took awhile - it is a still a hard concept that this high blood pressure is due to my inate immune system's dysregulation. I get it now... I don't need a 2nd BP med!  Benicar is not a very good BP med anyway; but is extremely powerful the way that the MP uses it by - dosing, pulsing and in combination with minicycline, etc.
As we've all had to come to terms with how sick we've been and are knowledgeable regarding herxing... I just need to relax, some. Everything will fit together. And with your help I am better armed to say No to spinal surgery & give the physician's link to my MD.
It is such a nice feeling that we can learn how to adjust the MP meds - in response to the level of herxing that occurs. So that we can tolerate our recovery.
Thank you, everyone. Martha
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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JRFoutin
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Posted: Sat Apr 19th, 2008 01:50 |
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Martha,
It may be too soon to be sure you don't need another bloodpressure medicine, and you would do well to have your Dr carefully review your history, and to register on the Private Section for Health Professionals.
As you are not yet on the MP, is difficult to tell exactly which blood pressure options you will need to use when you are on the MP. Most of us start the MP with one or another symptom that may need similar assists until we are able to let go of that extra medication. Nurse moderators are well versed with these kinds of questions. Advocates like me are not nurses and this site is only for general questions about the MP, not specific use of medications for one person or another.
Questions specific to medication for your unique situation should be discussed with nurse moderators on the study site when you begin the MP, and of course, with your Doctor. As you are currently considering your options, you and your Doctor might plan to take advantage of the MP and the astute assistance of nurse moderators at your earliest convenience.
In the mean time, you might want to also read:
Why is my B/P high? Why does it fluctuate?
Best to you Martha--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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GeorgeinRollaMO
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Posted: Sat Apr 19th, 2008 16:15 |
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Martha,
Janet has given you much good advice!!! I agree wholeheartedly with what she has said to you!!!!
Prior to my learning of the MP, and of course, starting the MP, I had both a partial cervical fusion (C-4 & C-5 and C-5 & C-6) in 1999 and surgery for lumbar stenosis in 2002 that was thought to be the basics of my neuropathy and lower leg cramps at night. The cervical fusion relieved the great pain that I was experiencing then in my right forearm. The lumbar surgery did NOTHING for me except give me a weakened back.
Neither surgery is any fun!!! 
If I had to do it over, I think that I would somehow try some temporary tactics for the forearm pain, and do the MP. And, of course, do the MP for the lumbar stenosis, too.
The partially fused neck is not an easy thing to have to learn to live with, and has been the reason that I have had two minor auto accidents backing into someone that I did not see because of the problem of having to turn my body and not my head.
In June 2002, I had an ultrasonic device bone density check that said that I was at risk for bone diminishment. A DEXA bone mineral density test confirmed that I had osteopenia... even though I had taken a calcium supplement (with some vitamin D) for seventeen years prior to those tests. In September 2002, I had a chest xray that showed that I had granulomatous disease "as evidence by the depositing of calcium..." in the soft tissue of my chest area. Those DX seem to be opposites, so I asked numerous med docs, "Why?". None could give me an answer. In June 2004, I discovered the MP, and the answer to that question.
When the 125D hormone is elevated above about a test figure of 42 pg/ml, the process of resorption starts pulling calcium out of bone, and it seems, putting it into soft tissue of the body..."granulomatous disease". IMO, if one's 125D hormone is fluctuating around that figure, when the level goes high the calcium seems to be pulled from the bone, then when the level lowers, it might be put back onto the bone causing spurious bone growth....bone spurs and stenosis, IMO. Giving you and I the trouble that we have experienced/are experiencing. Of course, the dysregulation is most probably affected by the dysregulation of the 125D hormone, which is part of the Th1 inflammation. However, there is another process that needs to be considered.
Along with the bacterial Th1 inflammation, IMO, is the poisoning of our systems by the intake of the product erroneously called a vitamin.... D, which is really a secosteroid, not a vitamin. This poisoning of our system is done slowly, and constantly, with our modern era food supply and touts to use supplements. If you will do a Google search on Pleasant Valley Farm Supply, then use their search engine to find "Quintox", you will see that that Quintox is a rodent control product, that is used for the killing of Norway rats and mice. The active ingredient of Quintox is cholecalceriferol... the chemical name for "vitamin" D. We know what happens when we take small amounts of a number of substances over a long time... arsenic, lead, mercury and thallium. The Pleasant Valley F. S. information says that the Quintox works by pulling the calcium from the bone and putting it into the heart and other cardiovascular parts... and it works to KILL Norway rats and mice in just 2 to 4 days!!!
I find it rather interesting that Madison, WI, is the reputed birthplace of the discovery of the product cholecalceriferol, that the Un of Wisc is reputed to either had or have a proprietary interest in the patent whose profits have built buildings there, that the manufacturer of Quintox is in Madison, WI, and that one of the persons on the NIH Recommending Commmittee for Supplements is also from Madison, WI. If you will read what Stephen Strauss, a Canadian newsreporter has to say about why Rheinhold Vieght is going around North America pushing the increased use of "vitamin" D..... http://www.cbc.ca/news/viewpoint/vp_strauss/20080213.html you may see that you have been set up to experience this pain that you are having, as I have been set up. I think of this as the Madison, Wisconsin Connection... not far different than the "French Connection" for another drug. It is about money, not people's health. Just somehow made legal.
It seems to me to be inconceivable that someone has not thought of the consequences of what cholecalceriferol might be doing to human bodies by its injestion of a little in many dosages over a long time, if those people knew the affect of cholcalceriferol on rodents and how it worked to accomplish that affect.
Based upon my experience with the surgery, I would vote or vie to do the MP first before having cervical or lumbar surgery!!! And hope that the getting rid of the poison to my system and the return of the proper regulation of the body's 125D hormone would take care of the bone problem in time. Whether the vertebre would remodel themselves to normalcy is still an open question. But at least IMO, no worse than what the surgeon's can promise you....even one who is a good friend to an enlighted MP doctor. What they can do for you is permanent alteration with NO hope of return to normalcy.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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Marber144
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Posted: Mon Apr 21st, 2008 02:05 |
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Thank you both Janet & George ~
Isn’t it good that we have a choice? I didn’t realize that I did, a few months ago when I was wondering how I was going to cope with SO many increasing medical problems. Each year the list gets longer -ailments & Doctors! With all the problems that come with inflammation, it is nice to think of LIFE after MP. I love to think of having an outdoor firepit this summer!!! (under the stars) Great Idea - I read on someone's thread. Fun!... Creativity is very Good.
Dr Blaney’s Back Pain is very informative and answers so many of my questions. Taking normal deep breaths has been increasingly difficult. C7 disc degeneration, with it being a point of mechanical stress & restricted upper rib motion! Now I know. I’ve tried massage, ultrasound, chiropractics, & acupuncture - with only short-term relief. It will be wonderful to address the Real Problem…Th1 pathogens.
Janet thank you for the link to information regarding BP meds. I plan to take that with me on Tuesday, so that I can switch from Diovan before starting Benicar. The Links are Great.
I’ll need to take a closer look at the recent MRI report of my ankle (that I injured last Thanksgiving) with 3 partially-torn muscle tendons. It also mentions bone marrow edema and inflammation in surrounding tissue. A DEXA scan stated that I had bones stronger that someone half my age. My endocrinologist told me that it may not be a good report – since it could be due to osteoarthritis laying down extra bone? Thanks George for sharing your thoughts on that. That must be what bone marrow edema refers to? She tested my 25 vit-D & insisted that I supplement with vit-D. I need to get back to her with a Marshall Protocol Folder. I asked that she test my 1,25 vit-D (which she did) & still wanted me to take vit-D. So, the beat goes on… How many others?
Yes, our American diet has more problems than most people could guess! Ughhh With genetically modified food, yellow food coloring #5, chemicals, “enrichments”, & preservatives – in so much of our food! Sometimes I think we are eating plastic instead of food! No wonder there is a surge of chronically ill people, just wanting to soak up some sun!
It sounds like George & I have been down similar paths. Thank you both for your encouraging words & helpful links.
We all need hope. Martha
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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JRFoutin
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Posted: Mon Apr 21st, 2008 17:13 |
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Martha,
Glad to see you are preparing for a professional-level dialog with your physician about the most important thing in the world to you, your life.
The MP takes a long time, but enjoying your life starts a whole lot sooner in the MP than people seem to believe. I was thrilled within just a short period of time when I saw that the science predicted exactly what would happen (D tests and immunopathology), because that meant I was heading toward wellness as opposed to the way I had been heading earlier.
Not long after I started the MP, I noticed subtle improvements. At about 6 months, life got a whole lot happier, even though I considered myself still too ill to go out much. Though I've worked immunopathology the entire time I've been on the MP, it is safe to say that the worst I get now would have been considered a picnic in the park compared to the first year. So you can expect to enjoy life while you are doing the MP... you don't have to wait until the MP is completed.
Per food, I had a similar conversation with my mother this weekend. She wondered what I ate when I refused to eat smartly packaged and marketed multi-ingredient products offered as samples at a store we shopped together. I told her I mostly ate real food with simple ingredients.
Good information for those who haven't had a chance to read it yet, and good to review from time to time even if you have read these before:
FOODS TO AVOID,
Diet and Disease: Eating for Health
MP Food Choices Simplified
Best to you Martha--Janet
____________________
12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Marber144
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Posted: Thu Apr 24th, 2008 18:47 |
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Thank you all for the suggestions & help.
Dr H. did not mention spinal surgery - neither did I! He was looking at a much Bigger Picture...
From various events in my history - we spoke about the possibility that I could be heterozygous (a carrier having one recessive gene) for Cystic Fibrosis. I had a brother & sister both die from CF when I was two. I'd thought that any "CF" medical problems -would only occur if I had both recessive genes! (Meaning that I had the disease.) Apparently, that's not the case...
Dr H. picked up on my problems of Motility - which CF children have. I know my sister & brother needed daily sessions to help them dislodge sticky mucous from their lungs. Cystic Fibrosis also effects the pancreas - resulting in a lack of digestive enzymes to break down food into nutrients that can be used by the body. They were very thin & often in the hospital with oxygen tents to help them breath. CF also makes one prone to infections due to the above abnormalities.... Dr H. added that if a person is heterozygous (a carrier) - that medical problems usually don't become evident, until enough finally cause a "disease" (around the age of 40-50's) after child-bareing years. My mom was a carrier. Now I can look back & see all the problems she had with "motility". She had Parkinson's (with swallowing problems) and died almost 3 years ago at the age of 94.5!
Two and a half years ago I started having trouble swallowing pills, when my LLMD put me on lots of supplements (30-40 pills/day). My ENT doctor ordered a barium swallowing test, which showed non-productive / uncoordinated movement of my espophagus. The ENT MD told me (along with the barium test) that I have very sticky musous and that could be partly why I have obstructive sleep apnea. Also, Dr H. picked up on my having had 5 pregnancies - but only 2 births. The 3 miscarriages could have been due to faulty attachment to the uterine wall....a motility problem. Both deliveries were C-sections - another motility issue.
I must say that through belonging to this bigger than lyme group, I have learned SO much! I am So grateful to all who have gone before me & look forward to helping those who follow...on MP. As I read each post - anyone of you could have: "lyme". It is the Th1 pathogens that are the root cause of all our diagnoses.
Yes, I did find a GEM of a doctor! The Food links were really helpful. I've bought one of Dana Carpender's Low-Carb cookbooks & a Glycemic Load cookbook.
Dr H. & I are ready to start the end of May. I want to start healing.
Thanks to all... Martha
Last edited on Thu Apr 24th, 2008 20:59 by Marber144
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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GeorgeinRollaMO
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Posted: Thu Apr 24th, 2008 21:15 |
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Martha,
Reading your last post, I may have missed the point of what you and Dr. H are going to start when you said, "As I read each post - anyone of you could have: "lyme"." and "Dr H. & I are ready to start the end of May. I want to start healing." I assumed that you are going to start Dr. H's usual "Lyme" treatment. I wrote the below based upon that assumption.
I think that you may have missed the point....... you have a "Th1 inflammation" in all probability. The so-called chronic "Lyme" disease is JUST ONE set of symptoms of the "Th1 inflammation"!!!!!
A Th1 inflammation is soup or stew of pleomorphic bacteria causing a soup or stew of symptoms. Borrelia burgdorferie senso stricto, which causes Lyme per the CDC, is just ONE strain of the variety of pleomorphic bacteria called borrelia. Said in other words.... borrelia bacteria are just ONE variety of the fifty-three varieties of pleomorphic bacteria, and bacteria that have biofilms, that cause the "Th1 inflammation".
Your cystic fibrosis is most probably NOT a genetic inheritance but most probably just another set of Th1 inflammation symptoms that the medical doctors have given a name to. This set of symptoms may have come about because of an inheritance of pleomorphic bacteria being handed down generation to generation within your family.
Dr. H is a very well known and respected physician in the Lyme community. However, he does not acknowledge that pleomorphic bacteria L-forms are pathogenic...disease causing.
There are numerous physicians that are very well known and respected in the sarcoidosis community. They do not acknowledge that pleomorphic bacteria L-forms are pathogenic, and are the cause of sarcoidosis. People are not getting "cured" with their treatments.
Please read the "Patient Interviews" that can be gotten to from the links in the right hand column of http://www.bacteriality.com After reading those, please read in particular the article, Bacteria vs. genetic predisposition: the spread of chronic disease in families
You might put "cystic fibrosis" into the Search window at the top of any of the MP 'study' site pages. There are some folks that are using the MP to treat their C.F.
The decision to do any one treatment needs to be YOUR decision, not anyone else's. However, you do need, IMHO, to base your decision on ALL factors.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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GeorgeinRollaMO
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Posted: Fri Apr 25th, 2008 00:41 |
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Martha,
Please consider the following, which is found under "Dr. Marshall's Perspective...Days of Molecular Medicine, and the bacteriality.com website:
The biologists understand what Paul Ewald told Amy -
http://bacteriality.com/2008/02/11/ewald/
Evolutionary biologists understand that if an allele (a sequence that codes for a gene) were to code for a disease it would slowly get weeded out of the population, particularly since people who are sick are much less likely to reproduce (especially people with a severe disease like schizophrenia). Yet a person’s chances of getting schizophrenia are 1 in 100. The reality is that faulty genes cannot maintain this frequency. If schizophrenia was a genetic disease, then according to the rules of mathematics, it would only occur in about 1 in every 10,000 people. The current frequency of the disease is just far too high.
{George's Note: it would be so for any disease, not just schizophrenia, such as cystic fibrosis.}
Wishing you, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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Marber144
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Posted: Fri Apr 25th, 2008 20:15 |
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George and others,
There are too many Dr H’s....
The Dr H. that P.Bear included in my request for an MD to help me on Marshall Protocol - at the other end of CT - is the one who I am being treated by.
The fact that we all are struggling with a plethora of pea soup – no matter what words have been pinned on us – is a huge expanse I’m still getting accustomed to. The Marshall Protocol makes the world of sense to me, and now I am trying to let all the treatment applications seep into the vast diagnoses - of which lyme is only a tiny part of. I am so Thankful to Trevor Marshall for having not only the brilliance of mind, but the courage of heart to extend healing to us all.
Thank you for your patience and all the care – everyone has extended to me. I expect to be healed --- only thru Marshall Protocol. MP’s umbrella covers words I had not before considered could be healed - like cystic fibrosis. I have a CF freind, who I plan to contact - so she can join me. I'd read a lot of Amy Proal’s writings at bacteriality.com but somehow had missed the connections to genetic abnormalities and the intervue of Paul Ewald. I’ve followed Frans’ posts & learned that MP can be a cure for mental illnesses.
I've learned thru MP & plan to continue learning for years to come.
Dr H & I are anxious to begin, but I must help drive our daughter home from Houston - arriving in CT in about a month. Meg helped me realize that waiting would be better.
Thanks Martha
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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GeorgeinRollaMO
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| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
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Posted: Sat Apr 26th, 2008 05:46 |
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Martha,
I apologize for misunderstanding which Dr. H!!!!! That led me wrongly.
You sound as though you are a good student!!!
Wishing you the best, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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bevhg
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| Joined: | Tue Apr 29th, 2008 |
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Posted: Tue Apr 29th, 2008 17:42 |
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Martha,
I am new to this forum. Just joined today. I have been afflicted with 3 tick-borne diseases for nearly 2 years: babesiosis, bartonella and lyme. I have just sold my house in West Hartford CT--can no longer live alone. Am moving to New Hampshire to live with my parents while I try to get well. My primary doc is Hamden CT. She ran the 1, 25 D test + it looks like I have Th1. Can you tell me where Dr. H is in CT + how I contact him?
I am so, so grateful for your help. Sending you all my best.
Bev
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Marber144
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| Joined: | Thu Mar 20th, 2008 |
| Location: | Connecticut USA |
| Posts: | 18 |
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Posted: Tue Jun 10th, 2008 14:24 |
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I need some help on benicar dosing...
Last week I saw my MP doctor to start MP. I've seen him twice before for ekg, genetic testing, and a current vit-D level check. My question is...he only prescribed 3 Beni/day & will not start the Mini until I see him in a month. Meg advised that I need more Beni & approval from him to take as frequently as every 4 hrs.
I just spoke with him to clarify my treatment. He stated that he wants me to only take 3 Beni/day, which will be increased to more when I add Mini (in a month). I have read not to ramp Beni - but he says ramping Beni is easier on one's body; besides, I will not need to modify (increase) dosing until an abx is added. He has treated 6 pts so far on MP and said that the protocol keeps changing. (Was Beni q8h originally?)
Since others have gone before me...what is recommended? He is not going to budge (increase dose to more than 3 Beni/day) for my 1st month on MP. Should I look for a new doctor to help me on MP? Did any of you start on 3 Beni/day? Will this be a problem for me as I encounter IP - the 1st month? I am 57 & have high BP - maybe he is concerned. My ekg was normal.
As a side note, I did test positive for a genetic marker & am a carrier for cystic fibrosis, since I have the mutated gene "delta f508" (a common one). This is probably an additional bacteria according to bacteriality.com. Just more pea-soup. I have joined a CF forum and will be able to spread the hope of MP to others.
Any input is appreciated... I want to get started.
Martha
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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Julia
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Posted: Tue Jun 10th, 2008 16:43 |
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Martha,
Your new question has been merged with your own personal thread. To find your thread if it isn't immediately visible, go to 'My Account' at the top of the page.
There are many who would envy you your MP-willing doctor, but it is a pity about his insistence on the minimum dose of Benicar. 40mg every 8 hrs is the bare minimum necessary for the MP, and is indeed what most of us veterans started with. You have to be careful about remembering to take it exactly every 8hrs by setting a timer of some sort.
40mg every 6hrs is now the preferred dose - most members seem to find they're more comfortable with it, and it means if you do forget for a few minutes you're still within the crucial 8 hours. And, as Meg says, it's best to have a good supply on hand in case you need to increase the dose.
'Ramping' Benicar actually refers to the wish of some doctors to start with the 40mg a day that is usually prescribed for lowering blood pressure, which is worse than useless for the MP.
I never had much reaction to starting Benicar, so I'm not really the one to advise on whether you should accept your doctor's instructions to do a month of 8-hourly dosing. At least he's saying you can increase when you start mino. But Meg has far more experience of the possibilities of immunopathology on Beni alone, so I would be guided by what she says.
Do you think your doctor could be persuaded to contact Dr Marshall?
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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Marber144
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| Joined: | Thu Mar 20th, 2008 |
| Location: | Connecticut USA |
| Posts: | 18 |
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Posted: Fri Jun 13th, 2008 21:16 |
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Julia,
Thank you for your informative response. We had a 30 hr power outage after 3 days of record heat - so I've had time to ponder my treatment. I obviously value MP moderators and RN responses. By contrast - I am upset that the MP doctor did not disclose that he treated MP using a modified protocol. Protecting myself during this process is more important than continuing with him. My BP is consistently high (not cyclical) - so it esp is puzzling why the minimal Beni q8h. The Protocol has been improved. So why not benifit from what others have experienced?
I have an apointment with a (new to me) Internal Med doctor tomorrow. Not expecting him to be an MP practitioner (Yet!). I will go with Gina's Physician's print-out in hand. I've also downloaded a 40 page explaination of specific benefits of the Beni blockade in general and the article "Cell Wall Deficient Bacteria and the MP". That booklet seems to explain the necesity of suficient Beni. I will find someone.
I enjoyed ready your (written questionair) interview done by Amy on Bacteriality.com - very interesting. Thank you for sharing your story. I'm wondering how far my Stealth Pathogens go back? I think pretty far. I am ready to begin my healing. Thank you all for giving me this opportunity to join you! We will have better days...But, I did enjoy the concept of enjoying herxing...Yes, a sign of that road to health which Dr Marshall has so kindly allowed us to join him on. Thanks Dr M for your research and conecting the dots of other researchers! Real Team work...with your's & other's research - but congratulations to you ~ for having the widom and courage to go beyond the bare facts.
All my Best to all of you.... Martha
Last edited on Fri Jun 13th, 2008 21:47 by Marber144
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
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Posted: Sat Jun 14th, 2008 14:50 |
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Martha,
From my experience 3 Benicar a day is doable as a baseline (if one is really cautious about time), just as Julia and Meg point out, but one must still have extra available for these reasons:
1. Light control: Unavoidable light exposure for Dr visits typically must be during daytime hours, for example. Also, any travel outside for periods of time one cannot wear a building and get out for survival basics or family emergency travel.
2. Training wheels: Especially during early MP days, learning to control antibiotic ramping outcomes that are tolerable means occasional exploration of what not to do, even for the most cautious. Extra Benicar is the time- & experience-proven assist.
3. Some must have more always + extras!: Some just absolutely need more than 3/day from the onset. So if one finds they are in a 4/day category (and above contingency items 1 or 2 occur and they must safely move to every 4 hours), then doctors help their MP patients by providing enough for extended periods of time -- using MORE than 4 a day.
Some doctors sometimes seem to have a mental construct of finite numbers dosed around the clock, and that the immune system will just politely stand aside while the medication does all the work.
Unfortunately, in immunopathology, both the person doing the MP and their doctor must take cues from what the immune system is doing and adjust accordingly. Failure to plan correctly for immunopathology means raising the risk for the person doing the MP, and not providing any safety net.
Best to you Martha--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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Marber144
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| Joined: | Thu Mar 20th, 2008 |
| Location: | Connecticut USA |
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Posted: Sat Jun 14th, 2008 20:01 |
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Janet,
Your clarity was really helpful, listing 3 likely situations where more Beni - than 3/day - is needed.
I did see the new IM (Internal Med) MD this morning. He had heard of MP, but had never used it to treat with. He took about 10 minutes to thumb thru the Physician's Handout & expressed concern about the high doses of Beni. I responded that FDA has approved the use at that level for MP. I said - Beni is what blocks the vit-D receptors & therefore enables my innate immune system to begin killing the bacteria. We went thru my other treatment options for lyme - very limited due to early in tx "allergies" (could have been herxing!?) to 2 major classes of antibiotics.
The fact that I've tried herbal tx: Cowden Protocol - 6 months, Buhner Protocol, and various individual herbs. All of which I initially did "ok", but went back to the old level of symptoms before too long. Zithromax has been my standby - the past 8 yrs. But, without the Beni (as in 2003 when I took zith 500mg/d for 8 months along with mepron - for babesia) my symptoms barely improved. MP is the only answer. It was pretty clear to this doctor that my list of other tx options had been exhausted.
He responded very enthusistically when I said that he could call & speak with Dr Marshall. He plans to call Dr M - this week. That's a Big start... He wants to see me the following week to go over everything & his decision. It was pretty clear that it was either him or someone else. I was emphatic about my decision to use MP.
If I need to go back to Dr H - I'll ask him to speak with Dr Marshall about prescribing more Beni. Although; he has used some form of MP for about 3 yrs now & didn't sound like he was likely to budge. He was aware that the current MP treates with 4 Beni/day. With this delay I may end up with an extra 30 tabs! I really don't want to get stuck with no way to increase my dosage, if/when needed. I feel like I should ask whoever does treat me to write out a treatment plan - so I know he will treat me - following the current Marshall Protocol.
All my Best to all of you ~ Martha
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Fatigue, jt pain, lyme, Bart, Babs, Ehrlich, Hashimoto, OA, neuropathy, apnea, Mus pain/tighness, heat intol ~ Diovan, Synthroid, Wellbutrin, Cymbalta
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