It was suggested that I start a new thread where people who are on the Marshall protocol can post their progress or lack thereof.

Sharing your enthusiasm or disappointment, your concerns and personal experience, is all fine, but I'm hoping people will try to be objective in what they report. We really need an honest assesment of our experience, so that others will have some idea what to expect and whether the protocol might be right for them or not. I applaud all of us who are willing to try it and share our experiences with others.

Also, everyone should be aware that there's a place at Sarcinfo.com where people are encouraged to report their experiences, which is beneficial to the entire community, and contributes to the research being conducted by Dr. Marshall, and his not-for-profit autoimmune research foundation.

I'd also advise that anyone who has questions about the protocol get advice from Dr. Marshall himself. The instructions for phase I of the protocol is at www.sarcinfo.com . It's VERY important that the protocol be followed exactly as instructed. Otherwise, you can harm yourself as well as the accuracy of the research effort. Dr. Marshall is happy to discuss your treatment with your doctor if that would help you.

Looking forward to your posts!

penny

(I'll start with my experience below.)

 

Day 1. suspended my 3xweekly dosage of Minocycline and took Benicar before bedtime. Immediately felt a relaxation of muscles and tension relief. Had best night's sleep in ages and noticeable reduction in joint pain the next morning.

Day 2. Continued to experience a reduction in pain and had another great night's sleep. Fatigue increasing (whether this is due to benicar, or the lack of minocin, I'm not sure.

Day 3. Purchased blood pressure monitor and could not get a reading on the systolic number. The Diastolic numbers were okay. This is not surprising, as it is often difficult for the doctor's office to get a reading as well. Felt a bit woozy, had a couple of heart kerthumps and fatigue seems to be increasing. However pain relief and sound sleep continue.

Day 4. Wooziness disappeared. No more heart activity. Fatigue continues (not sure why - possibly because I'm always fatigued unless I'm on an effective antibiotic).

Day 5. Overslept (an unusual event) and was late with my dose of Benicar. Woke with a headache. Can't say if that's due to missing dose of Benicar, or because of overcast weather, or because I'm not on the Minocin. I often wake with headaches when not on antibiotics. Have felt a bit stiffer today as well, particularly in knees and hips and left hand. However, ankles are much better. And my shoulders and upper back continue to feel more relaxed, and the rotator cuff type pain has been greatly diminished. Quite a relief, as it was getting difficult to use my arms for anything other than things that require very little strength. Even opening my trunk or getting up from a prone position was difficult. This has changed dramatically.

Okay, that's my progress so far. I will not normally post day by day results, but thought this might be helpful for people to see one person's response to the early stages of treatment. For me, the pain relief and better sleep is significant. However, my biggest concern is fatigue. It's the greatest hindrance in my life. I've tried everything for it, and the only thing that helps is the right antibiotic. I would gladly take pain in exchange for fatigue relief. This is my hope, that as I resume the antibiotics, that the fatigue will lessen. I'd be pretty ecstatic if that were to happen. Am already feeling encouraged by the results I've had.

penny

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I think it will be very confusing to have two threads on the experiences of Marshall's protocol, do you not?

Rosemary
 

I am optomistic as well. As a former pbs film maker..until I got lyme, I try to be clinical about my decisions. I have an auto-immune reaction with lyme so I believe I am a prime candidate for the protocol.

It is day 1 for me, on 2nd dose and I am experiencing more fatigue. There has been no "instant" change in symptoms. My wife and I both have CNS lyme and I am still " red " and experiencing body, nerve, muscle and neuro pain/ symptoms. I am hoping it is because my level of inflammation is chronic and it will take a while for Benicar to reverse the process.

I am pausing a 2 week rulid-bactrim protocol to add this. I will resume the abx in two or three days..but so far waiting to see. Tomorrow is an important day.

I hope and pray that Dr Marshall has discovered the way out of this miserable disease. He is a caring man..and open to phone calls to help us all.

Bill
 

In the meantime, Marshall has told me that my alkaline phosphatase level at 95 could indicate bone resorption. If the 1,25-D level comes back high, I'll need to pay attention to my bones. My mother has early osteoporosis, so that is a concern.

Because I have neurological sx, Marshall also suggested I experiment with protecting my eyes from sunlight, in order to reduce the D-125 levels in my eyes, and potentially in my brain.

I've been doing that for a few days, and find my eyes quickly got very light sensitive. I'm waiting on the sunglasses he recommends that protect your eyes from UV and IR light. I'm not taking any foods or supplements with added D in them, so that is not an issue.

When I see my doctor again in about a week we will review the tests, and hopefully he will be willing to give me a try on benicar.
 

I forgot to report that I have been progressively ill for most of my life, although did not realize it until looking back. I have tested negative for lyme, although I am not at all convinced of the test's accuracy. I have many of the symptoms, and even thought that I had the obvious onset of lyme disease many years ago, but my tests were negative (poor tests, I admit). I HAVE, however, tested positive for bone infection and other chronic, resistant bacterial infections. One of the problems that some of us experience who have bone infection and/or pain in the jaw region, is bone resorption. This is where our teeth are actually being reabsorbed into the body. The roots of the teeth are disintigrating. So this research by Trevor, where he discusses the messed up D hormonal precursor mechanism, and it's relationship to inflammation and bone resorption is very, VERY interesting to me. As I continue on the protocol, I will also share my experience as far as my jaw and sinuses are reacting, as these are my two known areas of diagnosed, chronic, antibiotic resistant infections. So far I HAVE noticed less pain in my jaw. I'm hoping this means the antibiotics will have a better chance in that region. I will let you know.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

You can post in one or both places. I'm not trying to cause confusion. Just a slightly different focus with an environment where people can post freely whatever they find relevant regarding their personal experience with the protocol. My understanding from JR is that his thread is intended to be more of a poll.

Good doctors have always said that the patient will tell you everything you need to know, if you'll just listen. So people can share what they'd like here, and perhaps one person's experience will trigger a recognition in another person, creating new insights that will help us all.

penny

[This message has been edited by pennyhoule (edited 07 May 2004).]
 

That;s the plan. The reality of this disease and the innovative treatment approaches that work..need to be documented.

I agree with your assessment. Dr Marshall said stick it out for a few days and see if it lifts. I will resume my Rulid-Bactrim abx protocol in a couple of days as per his recommendation and guidance.

I can also not totally avoid the sun. I have a 5 year old and summer in Maine is outdoors as well as some film work.

He felt a sunblock was not the best idea....but just try to stay as covered up as possible....but the exposure to sun would not destroy the benefit of the Benicar Protocol...just requires the 6-8 hour 40mgs to reduce the effects of vit D.

Will keep you posted on day 2.

Bill
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Woke with headache this morning. Usually that means I'll be completely wiped out for the rest of the day, even once I get the pain managed, I'll still feel like I've been hit by a truck until the following day. However today, the pain went away and it's evening now and I'm feeling better than I've felt in ages. And it's a different kind of better.

It's like the pressure in my head is gone. It's like the stress and anxiety are lifted. I feel light and relaxed. My whole body feels so relaxed, kind of tingly, now my head's feeling that way, too. I'm really wondering if this is having some kind of impact on my adrenals, or my other hormones, or my seretonin levels, because I have not felt this relaxed and optimistic in ages. It's like a heaviness being lifted.

Very, very curious. But very exciting.

penny

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Also weird that when I got really sick in the beginning, I had some very frightening itching episodes.

Frightening because they were so intense, and internal, so no lotion of any kind could help. And the itching was often accompanied by severe abdominal cramps. No doctor could explain it. Thought it was some kind of antihistimine response to something. It started out monthly, then increased in frequency until I was having several episodes a day. It was awful. I'd be in a meeting and suddenly I'd start itching, on the palms of hands, my feet, and sometimes my mouth and armpits. Any orifices. I'd just want to get up and run. Couldn't cocentrate at all.

What seemed to relieve it was b-vitamins and magnesium. I also started thyroid hormone around that time, but it seemed like the B's really made the big difference. I'll have to try them again.

This itching isn't nearly that bad. Just random. Hits my arm, then my chest, then my head, etc.

Scott, any ideas from an immunological p.o.v.? When I asked Trevor about the itching I'd been having with the Minocin, he said he didn't think it was an allergic response, but probably an immunological response.

I have to report that I woke up feeling really well otherwise though. No ankle stiffness when I got out of bed. VEry relaxed and rested.

I've been sleeping in, which I haven't been able to do in ages. I usually get up because I'm so restless in bed. But then feel terribly groggy for the next 2 hours.

Today I'm up feeling like I had a good night's sleep, even though I itched all night long. The fatigue isn't nearly as bad as it was a couple of days ago.

We'll see how I hold up, fatigue wise, throughout the day. But I have to say I'm feeling more normal right now than I have in ages.

penny

[This message has been edited by pennyhoule (edited 08 May 2004).]
 

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

* Sleep was more restless than usual.
* Fatigued and really winded when I took my 5 year old on his bike.
* Pain level perhaps slightly improved.
* Feel more fatigued on day 2 and especially 1 hour after the Benicar...also dizzy at times ( I have high BP so not that ).

My Doc wants me to stay on for at least 3-4 days to see if this lifts.

Hope this helps..

Bill
 

penny
 

penny
 

I'm suggesting this to you because I know that Rosesisland is someone who is keenly interested in this particular topic, and I also know that she absolutely cannot read large blocks of print.

That's why you might want to take just a minute to "fix" it, for the sake of folks like her and Cave. Thanks in advance.

I told him about what was going on and he said, "I don't want to jinx it, but this almost seems like some kind of miracle."

That sums up how I'm feeling right now. I don't want to jinx it (talking about it almost makes me worry that I will jinx it. Just superstition, I know).

But I really want this to continue.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

* Increased Fatigue persists especially within 1 hour of taking pill.
* Feel winded, out of breath and very dizzy at times
* Pain, inflammation, maybe slightly better but I paused the 600mg Rulid-Bactrim. That combo gave me the biggest herx in 4 years...even after one pill.
* Will slowly restart Rulid-Bactrim tonight..do not want to disrupt the 5 week Glasser protocol ( I have 3 weeks to go ).

Both of my Docs ( and myself ) think I need to give Dr Marshall's protocol a few more days. I will give it some more days..but need to break out of the increased fatigue ( have to try to keep working ).

Will keep you posted. Hopefully this will lift!

Bill492
 

To add to what Scott said about Alpha Lipoic
Acid;
(And I want to add something about Minocycline)

The 2 BEST antioxidants in my opinion are
Alpha lipoic acic (ALA) and Masqueliers OPCS
(proanthenols). I can give details if you'd like, but these two I credit with being able to protect my tissues (especially the lens in my eye from oxidizing -cataract) during years of inflammation.

And about Minocycline - for some reason, the Doc (including Trevor) fail to mention that you should be taking 500mg of Vit C with mino. If your taking the smaller doses (<100 mg every 48 hrs) then maybe you can skip it - but Mino will stain skin and bones
and Vit will keep that from occurring.

Here's the references:
If for some reason you can't get them - do a search on Minocycline Vitamin C on PubMed and you'll see them.

Barb
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10337289
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9893512

Do you have a BP monitor? If not, you really should get one and see if it is on the low side or not.

Barb, thanks for that information, I will start Vit. C today and plan to muddle through the links that you have so generously provided.

Day 3 for me Last night I didn't get the sleep that I had gotten the previously two nights. But, I believe it is because I had to reduce my dose because of my very low BP 85/44.

And, I think my hormones were playing with me BIG-TIME last night. I am currently off all hormones for I just tested with the slavia test and will be back on compounded natural hormones within the week.

Again, thanks all.

rosemary

edited to correct my bolding mistake.

[This message has been edited by rosesisland2000 (edited 09 May 2004).]
 

If it is low..which it could be. I am very sensitive to dugs, meds. Can you take 20 mgs instead of 40 and still get a good result?

Plus I restart rulid tonight to complete the protocol.
 

I'm concerned that if you start the abx before you're stabilized on the Benicar, which you apparently are not, that you could have a severe herx, making you feel much worse. I was very inclined to do the same thing, but then the deep fatigue suddenly lifted, and my bp stabilized.

Trevor told me that if I got too concerned about my blood pressure that I could try 20 mg every 6 hours. You might try that.

I'm glad you've got a doctor working closely with you on this. I really think if you're going to give this a chance to work, you need to try to stick with the protocol as closely as possible. And to be really careful when adding those abx. Very small doses to begin with.

Also, Trevor has a lot of scientific reasoning behind using the abx that he's using, so you might want to research that as well.

penny
 

Thanks!!!

Did Dr Marshall say that 20mgs would work? My Benicar side effects initially are extreme fatigue, dizzness and winded. Feel more foggy and lethargic than before.

The Rulid-Bactrim protocol is 5 weeks. I paused at week 2 to begin the Benicar and, with TM's advise, would reume after 2-3 days with a lighter dose to start. Don't want to lose momentum, because 1 pill of rulid put me in bed for 2 days.

The fatigue and fogginess from the Benicar ( not a herx ) is pretty rough...20mgs sounds like a good intermidiate step..but only if the dose is beneficial...and extinquishing inflammation...and the lyme.

Best,

Bill
 

Rosemary
 

are you taking any supplements?

Marshall recommends that all supplements be stopped while on the protocol.

His reasoning is that a very small percentage might help, another percentage can hurt (by improperly stimulating the immune system, or because they contain d vitamins, which many do). And that the rest are basically worthless in really helping us stop our illness.

Marshall feels that vitamin C can stimulate the inflammatory cycle of the immune system, which we don't want. Apparently small doses are okay, but he's not really in favor of it until you've reached phased 3 of the protocol.

I really recommend that you go to the sarc site and describe what's going on with you. I felt very reassured by their answers.

penny
 

I'm pasting some of Trevor's responses to me when I was concerned about my bp and fatigue.

Bill, I'm concerned about the abx, because you aren't yet stabilized on the benicar. When people add the abx in, and start to herx really badly, the answer is to increase the benicar, and considering you haven't stabilized yet, that could cause some serious discomfort. Even be dangerous. So please be careful. Like I keep saying, I'd ask Trevor yourself.

Also, you'll read below where it's explained that actually our parathyroid's going through a major adjustment here. Probably the thyroid, too. I think my thyroid adapting may have been one reason I experienced a little shortness of breath. That always happens when my thyroid levels are off. The shortness of breath has completely reversed itself now.

penny

Here are the posts from Trevor (and Meg)

Author: Admin (---.vnnyca.adelphia.net)
Date: 05-05-04 18:13

Penny,
A diastolic of 50-60 is not "too low".
We like all patients to get their 1,25-dihydroxyvitamin-D levels measured so that we can anticipate whether you might have discomfort while that level is being halved (in just a few days) by the Benicar

"Shortness of breath" sounds like a muscle problem to me, or possible interstitial diffusion difficulties. In any case, neither of those are caused by the ARB itself, rather by the secondary effects it is having as your body is adjusting to more reasonable levels of the inflammation-controlling hormones.

You need to keep the Benicar at 8 hourly dosing (or less). You might try taking only 20mg every 6 hours until your body gradually adjusts. If that doesn't help, you can also stop the Benicar and prepare yourself more fully before starting it again. You will not get full symptom relief at a dosage lower than 40mg every 8 hours, however, and most folks that lower their Benicar dosage do not find it helps them; lower dosage usually leads to instability. Often the key is to dose more frequently with a lower dose. When you have stabilized your hormones, then you will find, from time to time, you will need to increase the dosage to 40mg every 4 hours to ride out really bad herx.

Benicar is prophylactic, not palliative. You need to put the blockade in place to stop the excessive production of inflmmatory cytokines (and hormones 1,25-D and Ang-II)

..Trevor..

Author: Admin (---.vnnyca.adelphia.net)
Date: 05-05-04 20:18

Penny,
Taking tablets while you sleep is always a problem
When I was on 4 hour 40mg Benicar (after getting hit much harder by the 3-abx combo than I had anticipated) I was able to force myself into a shorter sleep style without upsetting my lifestyle. But it was really tough and I was sure glad when that herx had died away (about 5 weeks ) and I was able to get back to a 6-8 hr regimen.

Sometimes I took extra dosage before going to bed. The main thing is to ensure that the level in your body never falls below the critical level. And that level changes with anti-microbial activity. As time goes by you will get to feel when you need benicar. As the herx disappears, you slip out to 10 or even 12 hour dosing.

..Trevor..

Author: Meg (---.117.96.183.euc.wi.charter.com)
Date: 05-05-04 20:18

Penny,

Just a word to reassure you about hypotension although you seem to be pretty calm despite your symptoms. Are you using a quality blood pressure monitor? I use a top-rated Omron model and find that it picks up readings even in my obese and elderly patients with peripheral vascular disease. If I can't get a reading it gives me an error, it never gives me just the diastolic reading. I believe a good monitor will more accurately 'hear' the pulses than a human practitioner.

I don't believe that hypotension causes fatigue. This is simply a measure of the tension in your blood vessels. Blood is still being delivered to your tissues. Your fatigue is more likely the result of a Herxheimer reaction. My blood pressure remains low on Benicar 40mg every six hours but I usually have plenty of energy. Last week while taking blood pressures at a very busy health fair, I was getting so many high readings on people that I began to question my monitor although most of these people were obese. So I checked my own pressure and it was 84/57 and I felt fine.

Meg

Author: Admin (---.vnnyca.adelphia.net)
Date: 05-05-04 18:48

Penny,
I can best explain it by saying that your immune system is probably starting to recognize that it has pathogens to deal with, and is readjusting to the new reality. Additionally, the ParaThyroid Hormone (PTH) is dropping fast (it is no longer stimulated by high 1,25-D) and PTH controls calcium, the thyroid, and just about everything else in your body. Try the 20mg dose every 6 hours, Let us know if that helps, and if it doesn't.

Both lower and upper BP numbers are important, but you indicated that your pulse is weak, and starts quite high (somewhere) and so I haven't worried too much about that.

I didn't know you had already had 1,25-D tested. 'Preparing better' meant making sure your fat storage of 25-D is at reasonable levels and that your intake of vit D and sunshine is under control until your body readjusts itself.

..Trevor..

 

Thanks for the info. I really respect your opinon, especially as it relates to your own experience and its similarities to the Marshall Protocol.

I did want to point out that Marshal is pretty negative on supplements, especially in the first phases of the protocol. He's trying to stabilize the immune system and many supplements interfere with that.

He's not really in favor of taking vitamin C, until phase III. And he is confident that the low dose of minocycline will not stain the teeth.

I had staining when I took doxy for several months, my teeth would get rimmed in black. Fortunately it came off with strong brushing. But what I found really helpful was a Hydropulse flosser (uses pressurized water). It's great for removing all that built up tarter on the teeth as well.

penny
 

BP is 145/ 88 on the Banicar...soooo the fatigue, dizziness and winded feeling is not low pressue. Hmmmmmm..

I am toughing it through another day..will hold off abx again...

Best,

Bill

PS: Trevor e-mailed me and said his paper will be online tonight explaining the immune reaction...that I hope I'm having!
 

I've got definite herxing symptoms, very familiar ones, and I haven't even started the abx part yet. This seems to prove Trevor's point, that if we let it, the immune system can start to handle these invaders. Also, that Benicar has some protein busting properties, which exposes the bacteria making them visible to the immune system once again.

In the thread "the pathogenisis of Borreliosis" I shared my current experience with the following:

...I'm actually herxing on the Benicar alone. I've had some atypical herxing (one night of itching), and other herxing that I'm very familiar with. Today, it's sinus drainage, and plugged up ears. This is what happens when I usually start a new antibiotic. I haven't taken any antibiotics in over a week. The Benicar alone appears to be allowing my immune system to kill bugs.

The full post is here:
http://flash.lymenet.org/ubb/Forum1/HTML/024997-2.html

penny

[This message has been edited by pennyhoule (edited 09 May 2004).]
 

102/69!!! That's good for me! I'm usually in the 80/50 range.

penny
 

For those of you who juice, I wanted to share a recipe that I seem to be responding well too and gives me a good energy boost while on the Benicar. I've been doing about one a day since starting the protocol.

It's celery, spinach, kale, whole lemon/s, one or 2 apples, and raw ginger. This actually tastes [b]really[b] good.

So if you need some quick, healthy energy, it's worth a shot.

It's odd, but my daughters took me out to brunch, and I was feeling a bit dizzy, and my stomache was upset (I think from sinus drainage). Also my ears were plugged. I wasn't feeling that great, but didn't want to spoil my daughters' plans. Also I realize I hadn't eaten anything at all and perhaps my blood sugar was low.

I ordered a Waffle that was loaded with fresh strawberries, the waffle itself was actually quite thin. I felt much, much better after eating this. I'm craving fruit, which is a bit unusual.

I seem to be responding favorably to fruits and veggie juices right now. Yesterday, it was a peach/mango juice smoothie. A good friend of mine who is a doctor, and very into nutrition, swears by fruit as the panacea to our ills. Kind of counter to all of the anti-sugar, pro-protein advice we usually get. So I'm finding this kind of interesting.

Don't know if this will lend any insight to your own experiences, but thought I might as well share it.

My body definitely goes through weird cycles of cravings. Just like when pregnant. I do believe in listening to the body. I think sometimes, in trying to fill its requests, we make bad choices (i.e. bad fats), but I still think it talks to us, and can help us, if we listen.

penny
 

I have cut the dose to 20 mgs every 6 hrs on Dr Mashalls advice. It has helped!

*It has helped lift some of the extreme fatigue/ weakness..still dizzy at times and winded feeling.
* not as continually flushed red face. .seems to come and go
* pain level..can't really tell yet..not worse ..holding ( lower back, shoulders, etc..goes from systemic to local..been continual for 8 weeks )

Need to restart rulid & bactrim at a low dose tonight..keep you posted!

Bill

 

I have cut the dose to 20 mgs every 6 hrs on Dr Mashalls advice. It has helped!

*It has helped lift some of the extreme fatigue/ weakness..still dizzy at times and winded feeling.
* not as continually flushed red face. .seems to come and go
* pain level..can't really tell yet..not worse ..holding ( lower back, shoulders, etc..goes from systemic to local..been continual for 8 weeks )

Need to restart rulid & bactrim at a low dose tonight..keep you posted!

Bill

 

Today is Day 4 Yesterday, I had to break up my doses of Benicar to 6 doses at 20mg.

Why? Because all day I got a BP reading of
High-114/66 to a Low of 80/47. Actually with that high exception my BP average was around 88/51.

At 6:30 today, my BP was a whopping 106/59.

I, too, can tell that I am herxing. I haven't been on any abx since August 2003 after 20 months of everything from 4.5 months of IV Rocephin to many months of Flagyl and several more abx.

It's amazing that I am herxing. I am wondering if I should be getting the herxing under control before starting out very low on the Mino.

Anyway, I got the Omron Automatic BP monitor and it works great. It wasn't the most expensive on that Wal-Mart had, but, not the cheapest either. I did several friend's BP and know for a fact that this one is hitting on the money.

Thanks again, Penny, for sharing this information with us. It's just plain sense.

Rosemary

PS. Editing here to post 8:30 BP of 88/56.

[This message has been edited by rosesisland2000 (edited 10 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

quote:

---

Originally posted by treepatrol:
Why is there Two posts on progress with benicar?

---

Tree,
Penny answered that question on page 1 of this topic when Rosemary (rosesisland) asked the same thing. Here was her reply, which I'm copying and pasting again.

"Hi Rosemary,
You can post in one or both places. I'm not trying to cause confusion. Just a slightly different focus with an environment where people can post freely whatever they find relevant regarding their personal experience with the protocol. My understanding from JR is that his thread is intended to be more of a poll."

Comment:
In case you haven't noticed, JRW has been fussing at Penny for not getting properly tested again for LD before posting to this group. Therefore, Penny no longer felt comfortable posting under JRW's topic but felt the need to post her results, nonetheless.

On the other hand, JRW has jumped into the Benicar therapy without bothering to do the baseline lab tests for the D-metabolites and for ACE, as are several others.

I realize that Free2Reckon, with his vet-medical training and experience, feels very comfortable in going by his own clinical symptoms withOUT the necessity for baseline lab data, but I don't think that's a very good example for the rest of us to follow.

I can easily understand why everyone is tired of spending $$ on lab tests because of the enormous expense of this DD. I can't blame anyone for not wanting to do so, although it would be very helpful to others who follow after them if they would/could do it.

I worry that they might be jeopardizing the chance for the rest of us to be able to obtain this potentially valuable therapy later, unless they follow the Marshall Protocol exactly, including the baseline lab testing. That really worries me a lot.

[This message has been edited by TX Lyme Mom (edited 10 May 2004).]
 

How can we tell this is a definitive Herx reaction..and the fatigue, dizzy, etc..not a side effect of the drug??

I have not yet experienced any relief from the symptoms that I had 4 days ago...just more tired, foggy and dizzy. I am still red faced and flushed even though my hands are freezing. I can understand the body readjusting to the new levels, etc.... but

When I took the Rulid and was in bed for 3 days....with a fever.

Bill

 

quote:

---

Originally posted by Bill492:
How can we tell this is a definitive Herx reaction..and the fatigue, dizzy, etc..not a side effect of the drug??

---

Bill,
According to the classical definition of Jarish-Herxheimer reaction from the olden days of syphilis, it involved fever and often a precipitous drop in WBCs. However, the term Herx is more loosely defined nowadays to mean less intensive but recognizable reactions when one first starts taking a new antibiotic.

More is known about immunology and cytokine flares and so forth nowadays than was known even just a few years ago, not to mention the olden days of syphilis earlier in the last century, when the term JH reaction (aka Herx) first entered the medical lexicon.

To my way of thinking, it's all just semantics. Words change their meanings over time. Our LLMD seems to regard all symptom flares as being the result of cytokines.

It gets rather murky trying to say what's what anymore. What some traditionalists call a "side-effect" might actually be the result of an immunological response.

Even 80% of so-called "penicillin allergies" are proving Not to be true, life-threatening "allergic reactions". For example, our LLMD suggested that our daughter, who had had an allergic reaction (rash) to penicillin many years ago, try amoxicillin but that she start out at a very low dose. He also knew that we had an Epi-Pen and Benadryl on hand and would know how to handle an emergency so he left it up to her to decide if she wanted to try it. Luckily, she didn't have any problem at all from the standpoint of any kind of immediate anaphylactoid reaction.

His explanation was that what some patients experience on taking penicillin might actually be a Herx reaction instead. I'm inclined to think that he might be right.

My suggestion to you is just to keep a good set of journal notes so that you and your LLMD will be able to sort things out later, after you can see a larger TREND. Our LLMD in the past has encouraged us to observe for TRENDS and not to worry about the daily ups and downs; however, that can be quite difficult to discern, I'll agree.

PS - I'm editing now to add that it worries me that you are trying to combine this new therapy together with another new therapy, Bill, before you are stable on either one. That can get really confusing.

I know it's hard not to be impatient, but remember, "the turtle wins the race". If I were you, I would concentrate on one or the other therapy protocol right now, but not try to combine both at the same time.

[This message has been edited by TX Lyme Mom (edited 10 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Your timeline for My post and Penny leaving is totally inaccurate...LOOK at the thread...I was NOT discussing the fact that Penny has not been diagnosed, clinically or via testing, for Lyme at that time...I was objecting to her rudely hijacking the thread and turning it into an extension of all the other Benicar postings. I POLITELY and EXPLICITLY asked...note: ASKED, for the thread to be ONLY for those with LYME and who are taking Benicar. Penny had 6 post out of 18 at that point...with only one relevent to the thread, which she later childishly deleted. Just the Fact's Maam!

We need a quick reference thread...not a 10 page lovefest to Marshall...was that too much to ask? People could get all, AND MORE, information on the protocol from other threads...by I intended this thread to be just a report on progress or lack of...without propaganda and bull.

You seem to be locked into a mindset that Bill's and my symptoms are possibly herx's. They are not. PEOPLE that are NOT sick have the same reactions. Are they infected as well???

Ask any truthful pharmacist and you will learn the ALL blood pressure meds have side effects. Hell, the literature for Benicar lists dizziness, fatigue, etc., etc., for the general population, not Lymies only.

POINT: No one should call our experiences a herx. I asked my immunologist, my cardiologist, and my endocrinologist...not someone with NO experience and NO right to diagnose. BY THE WAY...nurses can't offer diagnoses of patients problems...a Vet. and a PHD sure as hell are treading the waters of illegality to do so.

That said, I will report, OBJECTIVELY, my results, and I hope others with LYME, will do the same. How else are we going to find out the reality of this protocol? I sure will NOT have a placebo effect.

Peace, love and wellness,
JRW
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I am a patient of Dr. Charles Crist, LLMD. I have had neuroborreliosis for 17 years with a Bartonella co-infection. I am serupositive for both.

Day 1 was almost identical to others; restful sleep, muscle relaxation and pain relief.

Day 2 began a very strange herx cycle, one that was familiar (from Flagyl + Biaxin combo), but felt good. All in my brain and all occuring @ approximately 1.5 hours after dosage.

Day 3 See Day 2

Day 4 Positive reductions in all major symptoms.

I am looking forward to adding in Biaxin again. This protocol has been the most effective to date, in the short term.

Keep on, keepin' on!

-Lyme Wolf

[This message has been edited by Lyme Wolf (edited 10 May 2004).]
 

Woke up feeling pretty good today again after not feeling as well yesterday. Slept really well again last night.

No big desire for coffee to get me going this a.m., which is a good thing.

Almost no stiffness in ankles. Overall body stiffness much better.

Had some very nasty smelling stools, which for me, is another sign of herxing. Can't point to any other reason for it, didn't eat anything out of the ordinary.

Actually, last night before bed I was experiencing some GI discomfort, mainly gas and cramping, which were relieved with charcoal tablets. Interesting that the GI discomfort was follwed by the unusual stools. My stomach feels fine now, however.

Bill,

Regarding your comments about herxing vs side effects. It's interesting that even in the most cautionary information about Benicar's side effects that JR posted, it still notes that these "side effects" may resolve in a few days.

Also, his emphasizing certain things, like a rash or itching as being side effects of the drug is a bit disingenuous, since EVERY drug warns you to stop or see your doctor if you have an allergic reaction. That's just standard protocol. They don't tell you anything to make you think you WILL have an allergic reaction. People in their trials didn't report allergic reactions.

And regarding the posts of people's experiences with Benicar. Those were people using it for High Blood Pressure. It's quite possible that their high blood pressure has something to do with a diseased heart. The diseased heart could even involve bacteria. THEY could even be herxing, as TX LymeMom suggests.

NOt to mention, he didn't post the link to the site he quotes. It's hard to say how many people LOVED the drug, had no side effects whatsoever. I mean going to that site and reading for ourselves could be helpful. And JR talks about some people having an agenda?

I asked Dr. Marshall about it, and he said that everyone on the program who's had these initial feelings of discomfort, has come through them, and that he only recalls one person who actually dropped out of the program. But it could take a couple of weeks before things settle down.

For me, the herx or the side effects, whichever you want to call it, are pretty mild compared to a lot of things, and I have the benefit of some big improvements, which makes it a lot easier for me to stick with it. I know it must be harder for you, because you're not seeing much benefit right now. And I would certainly never encourage you to go against what your body/mind's telling you, unless I knew for sure what was causing it. And I can't say that I do.

I'm pretty familiar with my body, what it can take and can't take. There were certain i.v. antibiotics that I could push my way through despite the discomfort, but there were others that made me so sick that I KNEW I could not continue with them. So, I'm pretty familiar with what my body does when it's responding to an antibiotic, and I can compare that to the Benicar.

I feel that most of my reactions are herxes, although I'm not certain about the wooziness I feel every once in a while. But I can't exactly blame it on the Benicar either, as this is something I've experienced throughout my illness. The only times I don't experience it are when I'm on abx, which I'm not on right now. So it's hard to say if it's the benicar, the illness, or the lack of abx. Or, if it's a hormonal shift due to the changes in my body. I'm looking forward to starting the minocin, to see if that improves, as it usually does on antibiotics.

Like you, I have a big deadline that I'm behind on. If I didn't feel stressed about working on that, I'd be happy to just relax and ride this out. I AM worried about you, that you may be trying to take the protocol too fast by adding in the other drugs before you're stable.

If you do start the other drugs, please start with very tiny amounts, and observe your reactions. I mean, if you get really bad herxing, well, I guess at least we'll know that Benicar does what Marshall claims it does at one level. Which is make the effect of the abx much stronger. But remember, he wants us to minimize the herxing so that our immune system can work with as little impediment as possible.

Personally, I'd rather see you do one protocol or the other. You can always stop the Benicar and come back to it later. No rule you have to make it to some kind of finsih line.

penny

 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I am worse on day 4 than 3 on 20mg every 6..and on this lower dose. The extreme fatigue and dizziness ( every time I stand up ) is really debilitating..but I will continue to hang in..Does the dizziness sound like a herx when I stand up??

Wouldn't it be a blessing if this truly made us well. Dr Marshall would deserve a nobel prize..plus the thanks of many folks.

Do you think a week long pause from Glassers intense Rullid-Bactrim combo will negate it's effectiveness?

Bill

[This message has been edited by Bill492 (edited 10 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I can recall once upon a time many years ago, I felt especially weak and decided to go have my BP measured. It was high, NOT low, as I had expected it to be low, instead. That event occurred during the first day of a menstrual period, when I was spending the day in bed from unusual weakness and deep fatigue. However, I had donated blood just a couple of days earlier that week, and my BP had been textbook perfect on that day. It really surprised me that my BP was UP, instead of DOWN, on the day when I felt so unusually weak.

Anyway, it might be a good idea to pay attention to whether there is a difference in how different individuals feel initially on Benicar, depending upon whether they started out (pre-Benicar) with high BP or with low BP.

Does this idea make sense?

[This message has been edited by TX Lyme Mom (edited 10 May 2004).]
 

Bill,

Also, I'm wondering, were you taking the heavy duty abx right up until you started the MP? Marshall wants you to suspend all abx for at least a week prior to starting. I gave it 4 days. This could account for some of our reactions, especially yours if you had any abx in your system or tissue when starting the Benicar.

Standing up and feeling worse sounds like orthostatic intolerance, where your blood pressure drops rather than rises as it should when standing up. That's something I've had to deal with, too. Have you been tested for that? Tilt table test? My own guess is that you've got heart involvement with your infection and this is stirring some stuff up.

penny

 

I spoke to Trevor today ( a great guy to take so much time to help )...

My fatigue, etc...has blossomed into one big miserable herx......pain, fatigue, lower back, weakness..red face, you know.

Dr Marshall has cut me to 10mgs of Benicar every six hours. Thinks that my immune is kickin butt on such a small dose. He said the dizziness is a result of the hormones readjusting...not BP at all.

5% of people get a horrible herx on Benicar..always my luck. He told me to add/ resume the Rulid & Bactrim that I was on ( 1/4 pill at first and build up )....

Tomorrow is a new day..my back is killing me...I am too tired to watch a new DVD. On the Rulid-Bactrim last week, I suffered but had tons of energy and clear as a bell.
I will report in the AM.

Hope this helps..

Bill
 

I just wanted to interject here, as Penny has known me for a long time on another forum,(lanelle) that I've been through the gammit of diagnosis. This friday I finally got my official Lyme diagnosis with orders for the IV Rocephin along with Diflucan, Flagyl, etc. oral meds.

I now believe that the oral diagnosis and the central sleep apnea diagnosis is a part of this borrelosis (sp) infection. But I have not read near enough to be learned on this topic.
I don't know how long I've battled this fatigue issue, but since I am now sleeping over 22 hours per day, it has consumed my world. I just don't know how many doctor's I have to see, before someone will believe me of this uncontrollable fatigue. Where my desire to do something is overrun by my mind's flat refusal to cooperate.

There are many things I've accepted as part of this illness, but to not be "believed" wasn't one of them. It is just downright devestating to know something is true in the depths of your being, and yet others will look at you with such unbelief.

I shall be following your progress as before.

Laney
 

I know you've been trying for so long, and I really admire you for hanging in there.
I just so sincerely hope your docs will finally now start trying to help you, and not see you as "too difficult" of a case. Those doctors who ignored us because of the "CFS" diagnosis should be put in jail!

Please keep us posted as to your progress. If you're like me, the abx at least got me functional so that I could pursue more options. Just know that the abx can make you pretty sick, and it's okay to take a break when you need to. You're already so weak, you may need to take it slow and REALLY steady, not letting these guys prescribe a weeks worth of abx, which in the end just makes you sicker.

You're sharp, even as sick as you are. I'm really excited for you, that you're finally going to get help.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I have goten the DX of BOTH possible sarcoidosis ( I had a granuloma in my groin lymph) and Lyme (had an equivocal WB from Igenex with 22-25 +66 + , 34,39,41,58 +/-, and many,many Lyme symptoms). So I think the MP is right for me.

Scott, Have you talked or emailed with Dr. B in VA? I am not sure exactly what to send her....there is so much to read.
I know she is extremely busy.

Anyway, when I get my results I will post and keep you updated on trying the protocol if and when I start.
 

About the same gang..so far. Started 1/4 pill rulid and Bactrim..so far, so good. I am on 10mgs of Benicar every 6 and will ramp up the abx again tonight. TM said should break in a week or so. I will hang in.

In regards to JR's posts concerning TM's credentials" ,

If it works..it works! We will all soon know. One of the leading physicists in the world was a book clerk, self taught in Sweden..only a few more days..I have done more meds that leading Doc's have recommended..and we are still sick.. Let's give TM's protocol and real try..
I will know in a few more days...

Best,

Bill
 

My fatigue that I had all weekend and some yesterday has been steadily lifting.

Yesterday, my BP range was from a high of 103/65 to a low of 88/53. A much improvement from Monday.

I am still taking my BP, frequently, throughout the day.

Sleep was rough through the weekend but, has returned to be great last night.

Amazingly, my, severe amd extreme, night sweats have really eased since being on Benicar.

I have started taking 20mgs every 3 hours so as I can get all the doses required in before I start to sleep. I think that this is working better for me.

I will continue to relate to you my progress.

Rosemary
 

A: No, I haven't. I'd recommend you have her talk to Trevor. If you wish, I'll email her if you give me her address.

I look forward to hearing your results.

Scott

 

That's great news....it sounds like you have begun to turn an important corner in your therapy.

Thank you for sharing your results with us.

Scott
 

I'm confident that your persistence will pay off. You are an example for us of one that may take longer to reach the benefits of Benicar therapy.

Thank you for sharing your results with us.

Have confidence,

Scott

[This message has been edited by free2reckon (edited 11 May 2004).]
 

Day 8 for me.

I woke up feeling very happy that I'm doing this protocol. For one, because it feels so awesome to be getting a good night's sleep. To actually luxuriate in bed for a bit after waking, or to even be able to go back to sleep if I want to (haven't been able to do that in years).

Usually I have to get up, because I'm too uncomfortable to lie around, and know I won't be able to sleep or rest anyway, either due to discomfort from being in bed all night (always thought my bed was too hard), or because the stressful mind chatter would force me up. Just could never rest well. Now sleeping is wonderful. I'm still amazed at how good it feels to sleep.

I'm also feeling encouraged that not only has the muscle/joint pain been so greatly reduced, but that it's also reduced the feeling of mental tension and stress. I don't know if this stress was due to the tension in my head/neck/shoulders, or what, but I feel so relaxed. It's like I'm on vacation. Before, anything could easily stress me out. Thoughts could produce anxiety. I'm not getting that at all.

So, I'm very happy about those improvements. I also think I'm stabilizing on the Benicar, because I don't feel concerned about the dizziness and fatigue nearly so much. Actually am having almost no dizziness whatsoever now. I DO still feel tired. No, it's not tired. It's more like I'm realizing I just don't have energy or strength. But I don't feel tired mentally. I actually feel quite alert and much more clear in the head. So perhaps it's going to take a while for the body to regain it's strength? I mean, I've been very sick for a very long time, and the body's not just going to bounce back over night. And I've still got a major battle going on in my body, fighting this infection. So maybe this low energy level is actually a beneficial thing, to aid in healing.

If I didn't have this friggin sculpture deadline that I'm so behind on, one that requires a lot of physical labor, I'd feel like I didn't have a care in the world. Actually I'm feeling fantastic compared to the last few years. Now if I could just get supercharged with energy to make up for all that down time. But don't want to push my luck. I'm happy to take it slow. Actually, it's good to take things slow, especially now that I don't feel as crummy, life seems worth living again.

penny

Today is day 15 for me and in just two short weeks, I can't believe how well I feel.

It's funny that when we chronically and gradually continue to get sick we don't realize how sick we become...it's only after you begin to get well again that you realize how ill you actually were.

I am quickly going into remission and many of my symptoms are going away.

A few things to report: As you mentioned Penny, you are able to handle stress better. I've been so busy these past two weeks that I would have never been able to keep up with this pace when I was very ill.

My tolerance for stress has increased tremedously...I can do several things at once again.

Something important to me has improved to and that is my relationship with my lovely wife and children. I'm becoming the husband and father I used to be...full of energy and fun to be with. I'm much more social again...and it's obvious to the family. What a blessing this is.

I'm also very social in public again...I know when I was ill...I didn't even care to be in public...now, I'm very social and full of energy.

On a personal note...my relationship with my wife has improved significantly....one of the most damaging symptoms of this miserable disease is the strain it puts on our relationship with our spouse. This disease has been the toughest thing my marriage has gone through...I'm very lucky to have a good woman that stuck by me through all of it. I had episodes of Lyme rage that no person should have to endure.

I'm happy to report that I'm becoming the man I used to be and the husband my wife deserves. I haven't been anxious and irritable as I've been in the past.

Well yes, ...it does seem to help with our love life too. Improved libido..etc. ;-)

As when the disease began it snowballed into many symptoms and problems...when the problem gets fixed, the benefits just seem to keep rolling in.

Benefits galore...from head to toe.

So thankful,

Scott

I'd just caution you not to overdo it. You still have an infection to fight, right?

I've often overdone it when feeling better, then crashed big time later, so I'm trying to remind myself not to get too excited and blow it. I suppose it's a good thing I still don't have the physical energy, or I'd probably be doing 50 things right now. But at least I'd be more relaxed about it. :-)

I'm looking forward to adding the minocycline. Am thinking I may be able to soon, since I seem to be stabilizing on the Benicar. I usually feel better on abx, so it will be interesting to see what happens with the combo. Will I improve, or start herxing? I'm going to start with a very safe dose of 25 mgs.

Someone said none of us were following the protocol exactly. I'm planning to follow it exactly, except for the fact that I was only off abx 4 days, rather than a week prior to starting.

penny

Oh, I forgot to report that I'm still having some mild, irritable bowell type symptoms, that started night before last. Nothing really annoying, just that my movements are frequentm dark and pretty toxic smelling (sorry, just reporting the facts). Not sure why this would be the case, but I feel like I'm getting a colon cleanse, which is good.

To kissis:

I didn't realize my last post *implied* that Dr. Crist had perscribed Benicar for me, he did not. As grace would have it, I was due to be seen by my local GP for, get this, hypertension (!) (that had been present for about 5 years) when the issue of Benicar exploded here.

My GP diagnosed hypertension and I responded that I had researched Benicar as a safe, effective hypertension drug and would like to use it, and that further, I would like the maximum dosage available. He gave me the prescription, which was for slightly less than the protocol calls for, and now I am in Day 5. The prescription calls for 3 months. I will plan to renew it with him at that time.

I continue to experience significant, subjective improvement in all symptoms of my borreliosis and bartonella, if not my total health.

I hope this is clear for any questions regarding where I obtained the prescription for Benicar.

Keep on, keepin' on!

-Lyme Wolf
 

...."I'd just caution you not to overdo it. You still have an infection to fight, right?"

Oh yes, ...I know I'm still infected and if I stopped therapy, I'd be right back where I started...the infection isn't cleared....I don't know how long that's going to take. Months at least...I imagine.

It's interesting...I can push myself pretty hard...I'm quickly getting in very good shape...my physical and mental stamina is dramatically improved. I don't experience that crash after excertion anymore...when I'm tired at the end of a busy day, I get sound restful sleep...like I used to prior to this disease.

..."I'm going to start with a very safe dose of 25 mgs."

I think that is a smart approach...I doubt if you have significant herxes with that dose.

...."Someone said none of us were following the protocol exactly."

....well, in my opinion (which a few don't seem to value) there are several ways to adjust Marshall's protocol...he's not rigid about it either...

A written protocol is for those that need guidance and instruction...if you know what's going on...adjustments to ones regimen is appropriate.

There's always room for improvement to any protocol.

...."Oh, I forgot to report that I'm still having some mild, irritable bowell type symptoms, that started night before last. .....Not sure why this would be the case, but I feel like I'm getting a colon cleanse, which is good.

Yeah...sounds like the body is doing some herxing...but also sounds like it's doing a lot of detoxing...the bile may be dumping a lot of dying borrelia toxins (BLPs) into the gut.

Cleansing it is,

Scott

 

My gall bladder had been getting really touchy over the last month. Maybe, like you say, the whole bile process is functioning better.

penny
 

Inflammation makes many things dysfunction...including the liver. We know that LD can raise liver enzymes which indicates that it causes hepatitis...that's right inflammation of the liver.

You are likely correct...the liver will likely work better when the inflammation is removed.

Scott

 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Julie
 

Why not have your doctor call Trevor, and let him explain why 5 mg doses may not be a good idea. According to Marshall, this can make you sicker. He could explain it and reassure your doc.

penny
 

I have been able to add 1/2 tablet ( 150mgs ) of Rulid and 1/2 a bactrim tablet without a huge herx ( so far )...twice a day.

I am planning on keeping this protocol inplace..until the fatigue lifts..and then increase the Benicar. Counting the minutes for this fatigue to lift!!!!!

Hope this helps

Bill
 

Yesterday was so hard for me. I had a lot of running around getting daughter, granddaughter and me tested for WB through Igenex. I've had two before and they have never been tested.

Sometimes, yesterday, I had to literally tell myself to put one foot in front of the other, I was that tired.

Although even with the fatigue, I got my best night's sleep, EVER. Even, better than my first night on Benicar.

I haven't had to get up during the night and change bed and my clothes due to night sweats since being on Benicar.

I am currently awaiting Saliva testing for my compounded natural hormones. I am not on any right now and can't believe that the Benicar, alone, has really helped me in this area.

Wondering if anyone else has gotten this great side effect of using Benicar.

I will start low on Mino this Friday. We are having a family reunion this weekend and may pospone the Mino til Sunday, as I well expect a big ole herx with the Mino.

I am still watching my BP very closely. Yesterday my high was 105/62 with a low of 89/48.

Rosemary
 

I'm day 9.

The dizziness is completely gone. I continue to sleep phenomenally well, and the pain continues to be reduced. I only have small twingy areas now, whereas before I had pain and stiffness everywhere.

It's early so hard to say for sure for today, but my lack of energy has been lessening somewhat.

Since I seem to have stabilized on the Benicar, I took 25 mg of Minocin last night, and so far no herxing other than the continued mild slightly irritable bowell that I've been experiencing since Sunday night. I'm hoping the minocin will help with energy, as it usually does.

penny
 

(Congrats on feeling better!)

Try to address the IBS (irritable bowel)thing. When that gets severe, you'll not be absorbing nutrients, OR the drugs.

Do you know what's causing it? Candida should be ruled out if you can.
Labcorp has a IgA, IgG, IgM candida panel.

Candex is a proprietary blend of enzymes which has worked for me against Candida.
And Lauricidin (which I also take) is reported to be effective on Candida. Candida doesn't build resistance against these.

Barb

quote:

---

Originally posted by rosesisland2000:
I am currently awaiting Saliva testing for my compounded natural hormones. I am not on any right now and can't believe that the Benicar, alone, has really helped me in this area.
Rosemary

---

Rosemary,
I haven't started the Benicar yet. I have noticed that Marshall mentions numerous times on his site that taking Benicar can change your thyroid functioning.

Some people have stopped thyroid meds after being on Benicar. Marshall believes the change in 1,25-D relieves thyroid problems, hence the increase in your own thyroid hormone levels.

Since 1,25-D is a hormone, and all the hormones interact, there is good reason to believe it could affect other hormone levels as well.

Marshall recommended that all supplemented hormone levels be checked regularly while taking Benicar, due to the possibilty of this change.

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Anyway, I feel FANTASTIC today!!! I can't believe it.

The IBS type symptoms also seem to have gone away.

I had IBS for years, and suddenly one day it just stopped altogether. Interesting that recent studies are suggesting IBS has a bacterial cause. (big shocker there. :-)

Anyway, what I was experiencing was mild in comparison to full blown IBS. I was just trying to sound a little less gross in my descriptions. I have the same kind of toxic BMs when I herx on varoius abx, even RIFE, which is one reason I feel RIFE has potential (the tough part is figuring out which frequencies to use, and which machine is good, and then survive the herxes).

Anyway, just wanted to report that I feel better today than I have in...forever. Honestly. If I get my full energy back, I'll feel like a completely new person. I already do feel like a different person. Even my good friend noticed on the phone that I sound different this a.m.

I'm so excited about the possibilities for my 18 year old daughter. I was telling her how the "pressure" in my head, for lack of better words, feels different. She said "what do you mean by pressure?". I tried to explain, which is not easy, and she said, "I know EXACTLY! I can't explain what it is, but all I want to do is sleep so I won't have to deal with it!" I'm going to get her tested, and see about getting her started on the protocol once school is out and she can handle the ups and downs in the beginning stages. I"m very excited and so encouraged. Keeping my fingers crossed for all of us.

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

Even on 10mgs every 6 hours, my fatigue is crushing. Any thoughts...so strange, I have not ever had fatigue ever this extreme. Bad body aches this AM,,,...subsided and again, the fatigue.

I want to tough this out but need this to lift at some point. 20mgs of Benicar and I am in bed all day..Any thoughts?

Bill
 

Is it completely necessary to be on abx while on Benicar for it to work properly?

Julie
 

There is even more significant evidence that true IBS is caused by nerve damage. IBS has become a catch all diagnosis when all of the other diagnosis don't fit.

I know for a fact that this is the case for me. Neuro Lyme has damaged the nerve endings to my stomach, heart and bowel. One of the problems we have to deal with in the medical community today is that they do this lumping and then medicate. If the treatment works, that is what you have. It is criminal that they are doing this.

I think everyone has to be very careful in making blanket statements, without undeniable facts in hand.
 

I think some people at Sarcinfo have had this same experience in the early days. Why not post there and ask for their input?

Personally, I still have fatigue, but I can tell today that it's really improving. I BOUNCED down the stairs this a.m. and almost at the bottom, realized what I was doing, and couldn't believe it!

I hope you turn the corner soon. But I also think it helps to hear from other people who've gone through the same thing. It's not as scary that way. And I think a lot of people at Sarcinfo have experienced the same thing in the early days, so why not ask them?

Hang in there,

penny
 

[This message has been edited by free2reckon (edited 13 May 2004).]
 

I'm confident that the fatigue will lift at some point...the tough question is when.

I believe that your fatigue is still likely a herx reaction.

I wonder if lowering the dose is in order?

I'll ask Trevor tomorrow for his opinion.

Scott

[This message has been edited by free2reckon (edited 13 May 2004).]
 

You know what I am tired of mincing words with you. There are other causes of inflammation besides bacteria. That was my point. You and Penny were going down the path that bacteria is the cause of IBS, I was pointing out that there were other causes.

Calling those of us that are expressing caution enemies is nothing but childish. We are just making sure that people understand the full ramification of what is being talked about. If you want to make a blanket statement, you better make sure that what you are stating fact that is undisputed by more than yourself and Marshall or have significant research that proves otherwise.

You are no different than the doctors we all chastise on a daily basis that insist 3 weeks of Doxy is all that is needed to get rid of Lyme or that Lyme does not exist in California. I never said that the research was bogus; I just said that the hype was inappropriate and irresponsible.

If the research is good it should stand out on its own merits, hype will not be necessary. We all want to get better, but we want to do it in a safe and sane manner. Rushing into a treatment plan without proper study is very dangerous. If you want to be a test case more power to you, I would love to hear objective results from you. What I don't want is for someone that is desperate to order Benicar from a non-reputable source thinking there is no risk, when no study has been conducted to prove that high dosages dont cause significant problems.

There are a lot of us here that are working our tails off to help people with Lyme. A lot of it goes unnoticed. I got a good start from this board, but to be honest the last couple of days have made me wonder if I should even bother posting here anymore. I am calling you out, regardless of what your supporters say, it is my opinion you are dangerous.

As I stated in one of the many threads, I was a victim of off-label use by a doctor who listened to researchers just like you and Marshall. These guys hyped their theories and made it seem like they were gold, but they were not and I almost died, because I had an undiagnosed condition that was made worse by the drug.

I am done speaking on this topic. I think everyone that is thinking about the protocol should make sure they have thought through all of the consequences, especially people considering giving it to a child. I wish you all good luck, and the quickest of recoveries. My time on this board is finished.

[This message has been edited by hwlatin (edited 12 May 2004).]
 

I hate to say it because I think you're really nice and we have the same LLMD, but the only thing "dangerous" (as you called Scott) is not looking into every avenue of treatment. Lyme kills, remember. I might as well have been dead before I started treating Lyme and I might as well die if I don't give it my all. I was beyond stage 3 of this illness and my body almost lost the battle, so I know what Lyme can do.

And you know that the only way to find out if any protocol works is to have people try it. We're all here talking about waiting for trials and studies. The FDA may have 10 years to burn, but I don't. Doing this under the care of a physician is a trial and a study. Benicar is a prescribed medicine and like any drug, could be dangerous if taken when not prescribed. Who do you want them to use for trials?...monkeys with Lyme. No, it needs to be us under the care of a doctor.

I have talked to a lot of Sarc patients who are following through with this and are having amazing results. From my understanding Sarcoidis is inflammation and the cause is suspected to be bacterial. Sounds Lymelike, doesn't it. A body that is in a constant state of inflammation cannot heal. You may kill bugs in a sporadic fashion, but you cannot heal. That's what Scott's been trying to address. The inflammation involved in this disease is underestimated and what holds us back. This is what the paper on Benicar is all about...reduce the inflammation while successfully reducing the level of pathogens.

-greg

[This message has been edited by kaos (edited 12 May 2004).]
 

A well planned trial, with people willing to volunteer and follow a rigid protocol and being monitored by medical doctors is the way to go. The reason I said Scott was dangerous, is that in my opinion he is making statments that might cause people to think that this protocol has no risk, when in reality the risk has not been defined.

I almost died too. I have been through a war. I think I would be willing to try just about anything. But I have a responsibility to be here for my kids, so that means I can not take huge risks, others might be better positioned to do so. I can not afford to make a decision based on a opinion that has not been properly vetted.

I am not against the Marshall plan, but I just want the facts. I really am not here to judge anyone, but people going to doctors getting perscriptions, then dosing themselves is the wrong way to go. While Scott has alot of knowledge he is not a Doctor of Medicine, neither is Marshall and he is giving advice like he is. That is what is really dangerous.

[This message has been edited by hwlatin (edited 13 May 2004).]
 

The two combined has been shown to give complete remission in sarcoidosis and I'm hopeful that it will do the same for borreliosis. It seemed to for Barb and it seems to be working for me and others here too.

Scott,

FYI, Barb did NOT use Benicar, I think she has already said this here, several times!

Nelly

They get bulldozed and ridiculed or told they "just don't want to get better" they're "the enemy of Truth!!"

I feel like hwlatin, I feel like not reading this board any longer, if no discussion is possible what is the use?

I understand JR becoming suspicious of Scott, although I personally think it is not a "conspiracy", and I feel that people are who they say they are, but maybe that makes their lack of caution and their arrogant certainties slightly worse!

Nelly
 

3. Yes, I am a hard man to put 'in a box'.

In January I wrote a chapter for a book on antenna design, an article on
Linux for C/C++ journal, and a paper on Autoimmune disease on the
invitation of a European Medical Journal (it is currently "in press").
Strange combination I guess, but basically I have been lucky enough to do
whatever I like, wherever my mind leads me.

..Trevor..
------------------------------------------
3. ME At 03:11 PM 5/11/2004 +0000, you wrote:
>Thank you Trevor that answers some questions for my friends they were
>arguing over you.
>---------------------------------------
>
>>From: Trevor Marshall
>>To:
>>Subject: Re: Sir
>>Date: Tue, 11 May 2004 08:06:17 -0700

>>X-OriginalArrivalTime: 11 May 2004 15:03:40.0742 (UTC)

>>
>>-----------------------------------------
2. It is a PhD. A PhD is a PhD.
>>
>>Most of my thesis describes clinical work in diabetes. My research and
>>publications at that time also describe (successful) research in
>>Cryptochidism and Infertility, including diabetes. You really shouldn't be
>>trying to characterize a PhD thesis other than what it is, a PhD
>>demonstrating research expertise in a specialty field. The 3 examiners were
>>a Bioengineer from Australia, the head of the Biomedical Research Dept at
>>Toronto's Hospital for Sick Kids, and an Academic M.D. from Israel.
>>
>>A researcher is best described by his/her publications and the acclaim they
>>have generated. Focus on them. All of them, hundreds. In a wide variety of
>>scientific endeavors. They define my contribution most succinctly.
>>
>>..trevor..
>>-------------------------------------------
2. ME At 02:51 PM 5/11/2004 +0000, you wrote:
>> >Okay I looked but I must be dumb it dosent say what your PHD is in is it in medicne or engineering what? Thanks
>> >
>> >--------------------------------------
>> >>From: Trevor Marshall
>> >>To: ""
>> >>Subject: Re: Sir
OriginalArrivalTime: 11 May 2004
>> >>
>> 1. Have a look at
>> >>http://autoimmunityresearch.com/about.htm
>> >>
>> >>..Trevor..
>> 1.--------------------------------------
>> >>ME At 02:41 PM 5/11/2004 +0000, you wrote:
>> >> >What is your PHd in ??I see your web site and you seem to be into a little of everthing.
--------------------------------------------

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

In my opinion he avoided answering me very well. A PHD. Is PHD my butt.

Phd's are in different area's of discipline.

Definition
discipline (SUBJECT)

a (particular) area of study, especially a subject studied at a college or university

Quoted from.
Cambridge Advanced Learner's Dictionary

Something feels funny here? My opinion only.

------------------
Do unto others as you would have them do unto you.
Link to opinions http://flash.lymenet.org/ubb/Forum1/HTML/025119.html

[This message has been edited by treepatrol (edited 13 May 2004).]
 

Yesterday had to go to ortho doc in Little Rock, a 2.5 hour one-way trip. We were gone all day. I am still experiencing fatigue, but, it seems to be slightly lifting, now.

The LR trip is and has been always hard on me. I can say that this time it was better and we even got to go shopping...oooo, I really spent way too much.

Doc wrote me a spript for 6 more weeks of PT and said with my underlying disease, borrelious, that I may have to go longer.

I told him about the Benicar protocal and he seems surprised that I would be taking so much, but, I reassured him that I was taking my BP every hour or so...had my batteries in the Omron and took it with me.

Good News is my BP yesterday never fell below 50 which is more reassuring that this will level itself out.

Thanks, Riversinger and Scott for your comments on my progress. Since I have always herxed when on ABX, and have a family reunion this w/end I have decided to start my Mino on Sunday as not to disappoint my mother by not being able to go. We want have to travel for having it on an aunt's farm here in this county.

Sleep last night was great as I did NOT wake til this a.m.

I have my phone appt with compounding pharmacy and until my saliva tests comes back from ZRT Labs, they will be interviewing me and will be starting the hormones based on my symptoms.

I've already filled out all the symptoms forms and will have to inform them about the use of the Benicar and thyroid thingy as I was not on this drug when I filled out the forms.

I feel much more confident now that my BP is rising that this is (to quote MS) "a good thing."

Thanks all and especially UNA for not locking this thread.

Rosemary
 

Day 10,

All I can say is, this (forum) has been one of the more bizarre experiences of my life.

If you'd like to continue discussing the MP, reporting your progress, asking questions, etc., you're welcome to visit the new yahoo group I've just created. Not much there yet, but come on over and we can get things rolling.
http://health.groups.yahoo.com/group/marshallprotocol/

People with crazy, paranoid agendas are welcome to stay here.

Here's wishing you all a quick recovery.

penny

Things seem bad but I think a lot of this is out of concern for peoples (WELL BEING)!

ON and in BOTH Sides Of this debate.
So good luck

Take Care.

------------------
Do unto others as you would have them do unto you.
 

I'm very interested in what you have to say about the Marshall Protocal but I have some questions that I don't wish to post on this board. Can you please e-mail me personally at your convenience? Thank you.

Julie
[email protected]
 

quote:

---

Originally posted by Semper Fi:
Tree look at the topic, it was to give results of the treatment. You guys have some sort of mean non-productive agenda. Do you have a PHD? Who cares. Many brillant people have not gone to colege. SO WHAT. Start your own post, about what ever, just get off here and quit driving people away. i guess this is why I got off this site for many months. I got back on to try and help my friens with lyme. They are now confused and think this is a chat room. Stay on topic, if you want to change topics ,start your own. I donate a substantial amount to this site and many other lyme groups and people. I'm fed up with this crap....I guess you and JRW can make up my portion... good luck....

---

Okay why havent you said anything to penny she went off topic?
(mean and non-productive agenda.) Now Iam that oh baby thats something. Thanks for that and good by.

[This message has been edited by treepatrol (edited 13 May 2004).]
 

If you want to talk to about Benicar and have questions for Scott, I would start at the yahoo group that Penny created.
 

Trout
 

Well gang, My excessive fatigue persists as well as body aches, pains, etc. This crushing fatigue is a new symptom....

Trevor Marshall has been great and I am up to 40mgs every 6 hours to see if the fatigue will break. I am going to give it 2 more days and then will have to pause if the fatigue does not lift. I am taking DR Marshall's blood tests for my Doc.

Abx
I am taking Rulid & Bactrim and rifing every 14 days with one of Dan's machines. My wife starts Leviquin for Bartonella today. She has not tested positive but Dr B has had great success treating folks for it..my LLMD in Maine has had one patient go from in-bed for 8 months to back to work...and no herx.

Sooooo, I am taking the Benicar and hope either the fatigue and/ or pain will start to lift. Hope this is helpful...

Bill492
 

I know that it's very hard not to become impatient with this illness, but it's usually better to take things more slowly and methodically, in order to have the best chance at success.

I think you posted somewhere above that Trevor Marshall had said it would be OK for you to add your antibiotics back in now, but I'm wondering if he understood clearly what dosages and which combo of antibiotics that you were on, when he said that. Doesn't he usually recommend taking antibiotics only every other day?

Remember, he's not used to dealing with Lyme patients yet at all, so he might be underestimating the severity of LD. Thus, he might have given you poor advice, by thinking that your problems aren't really as severe as what his regular sarcoidosis patients deal with.

We all want to see you succeed with this, so please keep the possibility in mind that it might not be either the Marshall protocol or the Gasser protocol alone, which is to blame for your difficulties with this, but it could be the combination of the two protocols done simultaneously, which isn't working out as well as you had hoped.

"Haste makes waste,"....and "The turtle wins the race."
 

On just the Benicar, I am extremely fatigued, out-of-breath and dizzy and foggy. I added the Rulid-Bactrim at a lower dose with no significant effect.

So far..not better on the Benicar... extremely fatigued and winded. I wish I could report the opposite..I would LOVE this to work. TM is caring and smart..I just can't lose this much ground to gain ground.

Bill492

[This message has been edited by Bill492 (edited 14 May 2004).]
 

Again, last night was a full night of sleep.

I am rather fatigued and energy level is at an all time low.

My pain is still here but, not as intense.

Yesterday BP level of high 106/70 to a low of 100/58 so this does seem promising to me.

Gotta run.

Rosemary
 

I will post regarding my energy levels, etc.. tomorrow..

Best,

Bill
 

Because of this I will not continue to report on my progress.

What are you thinking? I can that if anything other than conventional abx is brought up, then, it will be attacked.

The group is loosing a lot of good people who are and have been along only trying to help people, me included.

I shall try and bite my tounge in the future and only read posts. Hopefully, we shall succeed and, unfortunely, you will not know anything about it.

This group has gone to hell in a handbasket.

Yes, you did it and you did it to those of us who really wanted to learn about this and follow the progress of those of us doing this treatment.

YOUR LOSS!!!

Rosemary
 

There is a new yahoo group on the Marshall protocol. The link is listed here somewhere. Dr. Marshall and Dr. Wright are there to answer questions, so it will benefit you.

Please update your progress, do it for yourself and the others of us suffering like yourself, not for Scott. Thanks.
 

I know how Rosemary feels because I feel the same. You asked her to let people know of her progress. I agree that she should, but at the Benicar group where people listen. Anyone from Lymenet whose interested can go there.
 

I was very interested in what EVERYONE had to say. Although I don't expect to jump in and start the Marshall protocol right this second...

I find that everyone should have a voice as long as that voice isn't used to hurt someone's feelings.

I was sorry to see such an interesting topic go so wrong, but for those of you that did put your progress on the board... thank you.

I am always open to new ideas and this one too will be examined.
 

Push out anything other than long term abx,....

Rosemary....you said it right.

They are pushing away alot of GOOD people.

Trout
 

AGAIN: I saw closed mindedness coming from all around!

I simply don't see any value in degrading the people here, the moderators..and whoever "they" are that you refer to as "always pushing away new ideas"..that's just not true..the whole thing saddens me.

I am concerned about onboard conduct, this stuff you guys are saying above concerns me very much as well.

I stand for our group as a whole, and our integrity. Our ability to think intelligently and our hope to have a free atmosphere for discussion, pro or con, of new therapies.

This subject of Benicar was extremely constricted in discussion from day one. It was like, you had to be either "onboard" with the idea, or not. In such a black and white atmosphere..those of us in the grey are caught in some wierd void. I've got lots of questions, my Docs have lots of questions..IMO..lets just try and look at this and answer questions pertaining to TBD's. Many of those answers are not available..yet..but it seems to me they are well worth asking. PRO AND CON.

Not to be attacked for questioning, not to be spoken down to for questioning, and not to squash new ideas just for the sake of squashing them...everyones input has validity..it was not the info, but the HANDLING that was all screwy.

The valuable info that we could use to begin to answer our questions was removed by Free as "punishment"..was that not detrimental to folks looking for answers, as well?

Please, lets put pressure on the wound and pull together...stop the hemmorage that has begun here. That only can happen if we all examine ourselves..so we can examine the information with respect, inquiry, and diversity.

and Trout..we all live in glass houses, as far as I'm concerned. Do you get my drift?

Are those of you lashing out at Lymenet really prepared to throw stones?

Mo

[This message has been edited by Mo (edited 17 May 2004).]
 

I understand that is the opinion of you and Trout..

Please reread my post previous to this one.

IMO, It was the subject of Benicar and ALL it's elements that ripped through here like gang busters and shot holes through our otherwise solid group...

All we are saying..is give peace a chance..

Mo

[This message has been edited by Mo (edited 17 May 2004).]
 

When things get "hot" on Lymenet, it is almost always because the proponents of some new treatment take umbrage at anyone questioning it - and then things escalate from there on both sides.

My suggestion: those of you who don't want discussion on both sides of an issue don't need to participate in those discussions. As I've said in the political discussions at "Off Topic": if you can't stand dissent, you're welcome to go where dissent is not allowed.

Dan
 

it wasn't a punishment, as eluded to earlier.
http://flash.lymenet.org/ubb/Forum3/HTML/010136.html

Trout

Starting rumors...caused this in the first place.
 

I just had my D levels checked. This is where I will be reading, learning and possibly posting if I choose to pursue this therapy further. I will not be posting my progress here nor at Penny's new Yahoo site.

It appears that Penny deletes (censors) selected posts from her Marshall Protocol list whenever anyone asks questions which do not coincide with her point of view. That does NOT seem to be the trend at the Sarc Info site.