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

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

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

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.

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.

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.

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

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.

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

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

* 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..

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.

* 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!

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.

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?

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.

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,

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.

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.

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.

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

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

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

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.

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!

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!

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.

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.

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.

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.

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.

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

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.

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

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?

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.

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..

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.

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.

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.

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,

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.

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.

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.

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

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!

...."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,

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

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.