At this point in time, assuming that many or most LLMDs are not yet using the Marshall protocol, where can we get screened for markers like IL-4? Through an immunologist?

Thanks,

Sue

Hopefully, you can still edit your last post under that topic, though, in order to include the link to this new, continued topic discussion.

Otherwise, as soon as that older topic is no longer on page 1, then folks might have trouble finding it (for the sake of review) unless both topics are "inter-linked".

Just wanted to say that in the CFS community, it's extremely common for people to report that they never get "sick". As in viruses and flus. I used to have continuous colds and upper respiratory problems my entire young life. Then I got the sinus infection from hell, and didn't have another cold for at least 10 years. It's not an urban legend. It doesn't apply to every single PWC, but it's the norm, not the exception.

I hadn't had a cold in years until going on serious antibiotic therapy. That's when I developed a pretty good one. Actually started turning to bronchitis, but i.v. antibiotics aborted that.

Bacteria are antimicrobial. Their toxins are deadly. It's possible that the bacteria's toxins keep the viruses at bay, just as some viruses are known to kill bacteria (phage therapy).

Here is the 10 pager:
http://flash.lymenet.org/ubb/Forum1/HTML/024816.html

I KNOW that it is being said and repeated oft times on CFS lists (I've been there for long enough, and FYI Penny, I was among the very first to bring forth the notion of infectious illnesses in CFS, and to insist Lyme might also be a major player in our illness).

But I don't think we have enough (any?) evidence to prove that PWCFS/Lyme don't get viral infections. If I go by the people I know of, correspond with or know personally, this is certainly NOT TRUE, in fact the exact opposite, so could we hold back from making sweeping statements?

Are we happy to theorise that INF-gamma is high in Lymies?

Are we happy to accept as proof of this that we don't catch viral infections (since blood levels are not a good indication)?

Are we then happy to say that since we have high INF-gamma it is causing all these deleterious futile cytokine cascades and that by taking Benicar our immune systems will recover and rid us of bacteria?

Are we happy that Benicar does not carry any risks, especially for the ones like myself who DO get more than their fair share of viral infections?

Don't want to rain on anybody's party, just want to make sure we don't venture into potentially hazardous txs, at least for some of us, (albeit a minority, but I'm not sure).

There are many different disorders of the immune system. I'm no expert but I have been diagnosed with one myself.

I have noticed for a long time that I simply do not suffer from a recurring virus that used to give me fits, and from the viruses du jour that make their way around the office. Nevertheless, one of the first symptoms I had when I got ill, a year before my lyme was diagnosed, was a high EBV titer.

I don't know what to make of it, but I approach this with the understanding that there are individual differences in immune function, some baseline and some mediated by disease.

Personally, I would want an assessment of how MY immune system is malfunctioning and if that would make me a good candidate for improvement before I would embark on a protocol like this.

This is what I would recommend everyone do. The protocol may be great for some, and harmful for others.

My question is, will he need to really test me for anything before starting me on Benacar and Minocycline?

I am confident that he will "ao along" with me on this as I haven't gotten any relief from my pain even after 2.5 years of aggressive treatment with him and then with Dr. C. I canceled my appt with Dr. C for later in the month and plan to see him after I have been doing this for at least 2 months.

I'm not avoiding Dr. C on this, it's just with Physical Therapy I am doing to recover from my surgery to repair my rotatar cuff and the fact that my wedding is in June, I jsut can't get away for my May appointment and will reschedule for later in July or early August.

Thanks for your reply and thanks for bring this to our attention.

I'm your classic CFSer. Nothing abnormal at all on standard testing until my thyroid was finally diagnosed as malfunctiong (about 10 years after I told them it was.
:-)

Oh, and of course, then, based on my own persistence (mainly because I felt like I was dying but didn't look like it and no one took me seriously), they found bacteria in my jaw bone that "doesn't belong there" and then in looking at that, they found seriously "diseased" sinuses on CT scans (infected and full of gunk) even though I have no sinus symptoms. (makes you wonder what else is infected that's not obvious). Not to mention, the only time I feel better is when I'm on antibiotics. Yeah, nothing wrong with me. I'm just lazy. :-)

penny

Marshall does recommend testing the D-metabolites before starting benicar.How does Doctor measure my ACE, and my D-metabolites?

The level and the ratio of the two D levels gives an idea of how high the inflammation is, and how severe the herx is likely to be. Because they are not interpreted the same way the labs do, you might want to post on sarcinfo when you get your results, and get Marshall's feedback.

Also, the benicar lowers the level of 1,25-D, which is a hormone with multiple effects. If your levels are very high, and the benicar lowers it rapidly, you can get effects from that. Knowing what your levels are helps to anticipate what the response will be.

I highly recommend you read at least this paper: SarcInfo.com: Frequently-Asked-Questions.

You should aslo read the protocol paper. Marshall recommends that you be on the benicar for a week or two before starting the mino, so that the inflammatory blockaid is in place.
How to Start the Marshall Protocol

I think you are correct that, even if cytokines are causing most of our symptoms, that we all do not have the same cytokine cascades. Here is a quote Dr. Rosenbaum:

"Now to the problem with testing patients with Chronic Fatigue Syndrome. I wish that all the results were consistent, and that it would be easy to determine what is wrong in this disease; but it is not. The immune test results of these patients are not consistent; they are often contradictory."
http://www.findarticles.com/cf_dls/m0ISW/243/109946539/p1/article.jhtml

There is some more interesting immune info on this site.

Maybe I am still not getting it, but I think there are probably not only different triggers, but different pathways for cytokine cascades.

With that said, I think a trial of Benicar may not be a bad idea (one has to decide the risks for themselves of course), unless we start hearing some bad reports.

Now I see there is another test(sil2R) that should be done with Marshalls protocol...May I recommend that you post ALL of the tests he uses to determine his protocol...

So that people have all the info before going to their docs....

I just got back from seeing my doc and ordering the tests and now find there is another test...frustrating...

Current treatment
600mgs Rulid & 2 Bactrim
day 12 of protocol

Status
Year 4.5 of lyme
CNS Symptoms and severe body, muscle aches & burnings
bright red flush..looks like I have been at the beach, I wish!

I hope this helps. My wife has it too. If this helps me, she will start as well.

Current treatment
600mgs Rulid & 2 Bactrim
day 12 of protocol

Status
Year 4.5 of lyme
CNS Symptoms and severe body, muscle aches & burnings
bright red flush..looks like I have been at the beach, I wish!

I hope this helps. My wife has it too. If this helps me, she will start as well.

I went to my PCP armed with the protocol and printed out your response. He became very excited that there was a possibility for me to get some sleep, feel less pain and start the killing process, again, only this time it could possibly be effective in my treatment.

His only concern was about my low blood pressure and I have an arm pressure kit and will be checking it daily.

I have now decided since it's been almost 2 years since my last Igenex test, that I'll come into the office on Monday and have my blood drawn and will be sending it out to Igenex.

I am very curious as to just what Igenex will find after my 20 months of extensive abx of many, many kinds. I still say that we were wrong to start off with the IV Rocephin and had I seen Dr. C during that time, I would not have been put on IV.

But, my PCP was ignorant (that is different from being stupid as I see the two terms have been used here and they are not the one and the same) to the fact that Rocephin should not have been the first drug. I will see him, again, in two weeks.

I consider the doing the Rocephin before any orals a BIG mistake and I believe soon many others will believe this too. Experience is the teacher.

*****Took my first 40mg pill of Benicar yesterday at 4:00pm when I got out of the docs office. This was the first night in over 4 years that I didn't get out of the bed....I actually slept from 10:30pm till 4:00am. That was the most I've slept in any given night with the exception of the night of my surgery....those were really good drugs they gave me then.

I will be starting Minocycline next week. OOooo back to no carbs. Wouldn't want yeast on my honeymoon now will I?

My major concern is the {{{pain}}}. I did still wake up with the same pain. How long into this do you think the pain will slide the other way? What was your pain level? Mine has stayed at about 7.7-8 all day, all night, every 24 hours, seeming like forever.

Sunday was my last day on a Durgesic patch...I've been on them all the way up to 100mg since December. I am so proud of myself being able to down-ramp the Durgesic as it was not pretty getting off. Now if this can get me off the hydrocodone I'll be a very happy camper.

That is why I have missed a lot of these posts and, still, haven't caught up as of yet.

Your pain level may be less and therefore the Benicar worked very quickly for that. I don't know.

What I do know is, we really need to keep this thread open for those who are wanting to do this and those who are doing this. As with everything else, I am not emailing this, for just how does the private emailing help anyone else. Important information is lost forever when people privately email things that will benefit the group as a whole. This is my opinion.

Anyway I want to thank you, again, for all the time you've taken to bring this to the groups attention!!!!

The sleep's amazing isn't it? I've had a great night's sleep every night since starting the Benicar. As a matter of fact, I OVER slept this morning! Which I never do. So my benicar dose was an hour late.

The pain for me continues to get better. Before, every step or turn caused something to hurt somewhere. Now I'm finding that I may have a pain in my hip, but it's not as bad, and seems to migrate somewhere else fairly quickly. The everywhere pain I did have is no longer there. So I hope less pain becomes true for you too. I also really like the relaxed feeling I have in my shoulders and neck, compared to how they've always felt, which was tight and sore and very tense. Now it's so much less, and the shoulder pain is greatly reducing as well. I can also distinguish where those knots in my back are, whereas before, it was just all over tension to me.

The only thing I'm not having any luck with yet is the fatigue. I feel tired. Whether that's the Benicar or because I stopped the Minocin, I don't know. Usually, the abx give me energy, so I'm looking forward to starting it again.

My blood pressure monitor will not register my upper reading. The bottom number's okay. But that's something that happens to me all the time at the doctor's office, too. So not sure what to do about that. I had one day with some slight wooziness, but that seems to have passed. The only thing I really wish would improve is the fatigue. But maybe that's going to take a while longer, or need the addition of the minocin.

penny

again, thanks,

thanks for the link. Yes, there's a LOT out there. Looks like ARBs are going to be getting a lot of attention, as they seem to have an impact on a lot more than blood pressure. From what I understand, Benicar was developed by the Japanese, who are known for their ability to perfect upon things. Perhaps this explains why Benicar seems to work so much better than the other ARBs that came before it?

I was really interested to read one abstract that showed that mice who are bred with no immune systems have absolutely zero response to antibiotics. This shows how our immune system has to be functioning optimally for the abx to help.

I see him Mid-May..my son is on IV after very severe brain infection, as well as Bartonella and Mycoplasma..he has experienced significant overall improvement, my guess is he is at about 65%, comparitavely to his worst state being a true zero.

He's on IV plus high doses of Mino, Rifampin and Plaquanil. Multiple supps, plus CoQ10 and magnesiun malate.

I am going to be ready to have a conversation with him about it then..though my son may not be ready to reduce his regimen, tough call, but still..

Oftentimes we talk about things that turn out to be appropriate for adults, not kids..ect (we discuss my case as well)..so I hope he'll have input on the theory, whether or not this is a good thing to consider for Ryan in particular at this time.

He is extremely busy, with literally thousands of kids under his care..and I know he sometimes can't get to the info sent him.

I will use part of our time with him to discuss..gotta do my homework.

Mo

Similarly to what you're doing, though..he is a medical maverick and stays focussed on the problem, with no disctractions from the task at hand or outside pressures...

Thank God.

If this makes sence to him, he'll likely respond as to how and if it can apply in kids or adults.

Mo

I say this because I've been spending hours and hours looking at the materials at those two websites this whole week. There's a ton of material to become familiar with.

Frankly, if our LLMD were to jump into this withOUT taking plenty of time to study and learn about it first, then I wouldn't have much confidence in it myself.

[This message has been edited by lymewarrior03 (edited 08 May 2004).]

I have some empathy for them. Also feel a lot of frustration with the doctors who're just punching the time clock. And there are a lot of those out there too. I think they've deadened their emotions. I've always thought being a doctor would have to be one of the worst jobs on the planet.

When my friend, who's been his patient for years, and whose family business referred many many patients to him, told him her family could no way afford this retainer fee, he got upset and asked her if she thought it was about the money. She thought about it for a moment, and said, what else am I supposed to think? That's when he started swearing at her and told her to get out of his *effing* office!

This doctor also has CFS/FMS himself. No clue how to cure himself. Maybe he's got lyme too. Sounds like he's experiencing some "lyme rage" himself.

Kind of scary, putting our lives in the hands of people like this.

For your information, my doctor, and at least three other ILADS doctors have read this info. They need more proof...better studies...or should I say..ANY study conducted in a strict, double blinded, placebo driven, strictly controlled environment... A NON-ANECDOTAL STUDY!!!!

You have absolutely NOTHING but theories and you have the nerve to blast concerned, responsible professionals, who work with HUMAN LYME DISEASE...(the human body IS different in MANY ways from your animal friends,)for not responding to YOU??? Who the hell are you? DO you know how many of these "CURES" these doctors have seen over the years, only to be greatly disappointed? How long have you had Lyme? People I know have had it as long as 54, yes, 54 years!!!!

Yet, you in your self rightous, rude and pushy manner, put people down for being cautious with their treatments, and the treatments of others????

Do us all a favor...you have given us the info. Sit back, if you can stand not grandstanding and pushing people around, and WAIT TO SEE THE RESULTS.

You, by you own admission have an extremely light case...this means NOTHING to people who have suffered greatly for years.

Penny, bless her heart...by her own admission, does not have Lyme.

So...where are all the people who have been greatly helped???

By the way...Benicar is NOT producing a herx when it is first started, because it, like most other High Blood Pressure Medications, make EVERYONE fatigued, dizzy,weak, etc. even if the user has NO infections...

ASK A PHARMACIST FOR TRUTH!!!! Stop spreading misinformation. I am NOT herxing...I can read the literature that comes with the medication, and YES, I have the ability to call a real expert in medicine, a Pharmacologist that works for Sankyo...the makers of Benicar.

Norvasc, and other blood pressure meds produce the same symptoms in otherwise healthy people...these are NOT HERX REACTIONS!

Are you an MD??? How are you diagnosing people if you are not? How are you and Marshall recommending various dosages if you are not an MD???

Your ego is the problem here...you delight in having ten page on your post, mostly replies from you, and then you ignore valid concerns and call people ignorant and stupid!!!

You have no credibility as a doctor..as you try to be.

The best thing to do now, is simple: Wait and see what happens, if your ego can let you.

NEVER, I MEAN NEVER treat your animals as badly as you do some of the people here.

I know PLENTY of Veterinarians who would never dream of trying to give medical advice to people...it is unethical and illegal.

AS I stated before...I am trying this because I have nothing better to do...I really don't care. But I will never recommend something that has not been clinically studied...(as some of our LLMD's are doing now with other protocols,) to anyone I cared about...unless my self importance and having a dubious "CURE" were important for me to announce to the world, as you did on your first post. Good move.

Skeptical? Damm right. Looking out for number one...and all my friends. Be careful out there friends...no everything is as it seems...there is always another side...look for it.

No, this is not what I said. Are you a doctor? I've been told by some doctors that I probably do have lyme. And the lyme community loves to tell CFS patients that they have undiagnosed lyme. As you well know, it's not an easy diagnosis to make. There are as many false positives as there are false negatives. So who can be sure? It ultimately comes down to a doctor's interpretation of a number of factors. And I'm not inclined to spend $1,000 of my own money in more tests to TRY to prove something that doesn't get me closer to being well.

I already know I've got a difficult to treat bacterial infection. I think that we're all dealing with a pathogenic illness, and that it's more likely to be a number of different bacterial infections, co-infections, etc. that are causing the similarity in our symptoms. I can't even kill the organisms I know I do have, so I don't really care which other organisms I have unless that's going to help me know how to get rid of them, and so far, that hasn't turned out to be the case with Lyme. I know that there are many organisms besides lyme which are just as difficult to eradicate. I know that I've got an infection, and that I want to get well. I want us all to get well. That's my focus.

Starting a protocol like Marshalls in the middle of intensive antibiotic therapy with out proper studies could be risky. These doctors are already risking their liscenses as it is. I would expect a significant amount of time to pass before they would consider adopting it as a whole.

If you want to be a test case the more power to you. I for one have talked to two of my doctors that did take the time to look at the information, both who said that in theory it might just work but they did not feel comfortable without proper testing.

I have to say anyone advocating Benicar for children out of the box with no testing is acting irresponsibly, and that on its own would make me feel uncomfortable about the research.

Personally, I would rather see anyone using Marshall's plan stay away from the ILADS doctors for the time being so as not to create any more conterversy, until such a time this medication is approved for use in treating Lyme and other infections.

My wife and I have seen 4 leading LLMD's over the past 5 years....with minor success. There is NO ANSWER...what???...NO ANSWER..Huh?
That;s the truth...we need to explore every option and make mature decisions. Even Dr F said it is experimentation at this point.

So hooray Scott, Trevor, SkyKing.. everybody who cares enough to post their ideas on this forum. Marshall's protocol is probably the first new idea that we have heard in the 5 years we have been visiting the forum. Decide for yourselves!

I am on day 2 of Benicar..still fatigued by it . If the fatigue does not lift, I will have to stop. I am also rifing every 10 days as per Skyking and will restart rulid-bactrim tomorrow...

I appreciate and applaud any new idea!!

Thanks,

Bill