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.

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.

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

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.

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.

(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.

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.

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?

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

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 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,

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

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.

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

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.

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