posted 25 April 2004 11:27            

I'm writing to tell you of a possible cure for chronic lyme. I've been sick for over 25 years. Nobody is more skeptical of people claiming to have a cure than me. You have nothing to lose by checking this out. Technically it is not a cure. It controls the symptoms.

Dr. David Moskowitz at Genomedics in St. Louis has the answers. I will let him speak for himself concerning theories, etc. But it has to do with immunity, receptors and inflammation. The drug is an ACE inhibitor. It is labelled for treating high blood pressure. It's inexpensive and safe.

I started taking cozaar about one month ago. At first I didn't think it was working, but after 2 weeks it was like a miracle. Now I'm pain free. Muscles relaxed. Skin conditions cleared up. My mouth had been unsymmetrical for 25 years - it is now symmetrical. The trigeminal neuralgia is gone. Fibromyalgia is gone. Fatigue is gone. I had ached for years. The aching is gone. I'm still having headaches, but they have improved. Many other symptoms have cleared up.

Please - write to Dr. Moskowitz. dwmoskowitz@genomedics.com or go to his website at www. genomedics.com

Give it a try. He will work with your local doctor. Don't quit for a month. I want to read about other patients results with cozaar.

Good luck,

posted 25 April 2004 11:32               

I hope you've had lengthy treatment with antibiotics also.

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oops!
Lymetutu

posted 25 April 2004 11:38            

quote:

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Originally posted by Lymetoo:
Sounds interesting. I'm a skeptic until I check it out! Just wondering though, how much does this drug lower the BP?? Mine is already too low.

I hope you've had lengthy treatment with antibiotics also.

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Yes, I've had lengthy antibiotics. 13 months and just quit.

My blood pressure is on the low side. I don't get dizzy, but it does drop at times. It's a small price to pay. Take it at bedtime. Take smaller doses, etc.

posted 25 April 2004 11:54            

quote:

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Originally posted by Lymelighter:
What did "cozaar" cost you, or was it given as part of a clinical trial and thus gratis?

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posted 25 April 2004 12:08            

The sarcoidosis patients there use mainly Benicar. They use it to relieve symptoms generally, but with a focus on preventing the misery of herx.

You started feeling better two weeks ago and subsequently quit antibiotics? If you were miserable three weeks ago from a Lyme infection, why would you quit antibiotics now? The ACE inhibitors don't kill bacteria.

I'm thinking about testing this approach to relieve symptoms, but I don't see how this would negate the need for antibiotics.

posted 25 April 2004 12:18            

quote:

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Originally posted by phage:
The use of ACE inhibitors for controlling inflammation is also described at length at www.sarcinfo.com

The sarcoidosis patients there use mainly Benicar. They use it to relieve symptoms generally, but with a focus on preventing the misery of herx.

You started feeling better two weeks ago and subsequently quit antibiotics? If you were miserable three weeks ago from a Lyme infection, why would you quit antibiotics now? The ACE inhibitors don't kill bacteria.

I'm thinking about testing this approach to relieve symptoms, but I don't see how this would negate the need for antibiotics.

Your testimony is greatly appreciated. I was on the fence about trying ARBs, but now I think I will.

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I wanted Dr. Moskowitz to speak for himself about his theory, but I will say this:
He believes certain disease organisms make us sick, but don't cause the damage we see in West Nile and others (lyme?). These organisms cause over reaction of the immune system. Whereas, all the other doctors are trying to kill the organism he is trying to turn off the over reactive immune system.

I quit the antibiotics because they were not helping and it's not good to be on them forever. It was time to go another route. I do believe (but have no proof) that it is good to try to kill the spirochete first. But nobody knows if and when the antibiotics kill the very last trace of spirochetes in lyme patients. The debate will go on and on.

posted 25 April 2004 12:36            

quote:

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Originally posted by Lymelighter:
Perhaps this is a question for Dr. M: Cozaar and "Ace inhibitors" have been around for awhile. Does this company have a novel protocol with Cozaar for Lyme, or is it simply a new off-label use for an "old" drug?

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Dr. M has a for profit research business. At this time he is not charging for the trials. He is testing cozaar on a wide variety of diseases. Lyme wasn't on the list, but I wrote to him and asked him to try it on me. He is very interested. He wants the patent for using cozaar to treat these diseases. But first he has to have the data to support his claim.

It is an off-label use of cozaar at this time. Cozaar has been around for a long time.

posted 25 April 2004 14:16            

Dr. Moskowitz IS selling something. He hopes to eventually market the use of ACE inhibitors for a profit. Nothing inherently wrong with that, but I have a few concerns. His site says:

"GenoMed invites physicians to join its Clinical Outcomes Improvement NetworkTM in order to bring the latest in genomics-based medicine to your patients. Of the $800 annual subscription fee paid by your patient to belong to GenoMed's COIPTM, the physician is paid $200 in exchange for managing the patient and updating GenoMed on the patient's clinical course. Thus, a physician with 1,000 hypertensive or diabetic patients in his/her panel could earn an extra $200,000 annually while delivering superior outpatient preventive care."

Apparently, the "Clinical Outcomes Improvement Program" (a term that is actually trademarked) is not a formal clinical trial. Will the patients who purchase this membership first be informed that their own physicians are receiving a financial incentive for promoting the therapy? There is a conflict in such a patient/physician relationship that I doubt will be made transparent. Will the "clinical outcomes" be reported in an unbiased way?

Might he eventually promote this therapy for "post-lyme" symptoms to the exclusion of antibiotics? The last thing we need is a company with a financial interest in rejecting evidence of chronic lyme infection.

It turns out that ACE inhibitors and ARBs are separate classes of drugs that nonetheless achieve similar anti-inflammatory effects. I checked Dr. Moskowitz's patent applications and it appears that he claims a right to the use of ARBs only when combined with the ACE inhibitors. But the people at www.sarcinfo.com use the ARBs quite successfully without combining them with the ACE inhibitors. So why would anyone pay Dr. Moskowitz's licensees' for the privilege of using ACE or ACE+ARB when ARBs alone will work?

The mere discussion here of the possible use of ARBs for Lyme should constitute "public disclosure" and should therefore preclude any right to patent the use of ARBs for Lyme. I'm therefore uncomfortable with the prospect of a company with the incentive to marginalize the evidence that ARBs may be an effective surrogate for ACE inhibitors.

posted 25 April 2004 14:44            

quote:

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Originally posted by phage:
I did some snooping.

Dr. Moskowitz IS selling something. He hopes to eventually market the use of ACE inhibitors for a profit. Nothing inherently wrong with that, but I have a few concerns. His site says:

"GenoMed invites physicians to join its Clinical Outcomes Improvement NetworkTM in order to bring the latest in genomics-based medicine to your patients. Of the $800 annual subscription fee paid by your patient to belong to GenoMed's COIPTM, the physician is paid $200 in exchange for managing the patient and updating GenoMed on the patient's clinical course. Thus, a physician with 1,000 hypertensive or diabetic patients in his/her panel could earn an extra $200,000 annually while delivering superior outpatient preventive care."

Apparently, the "Clinical Outcomes Improvement Program" (a term that is actually trademarked) is not a formal clinical trial. Will the patients who purchase this membership first be informed that their own physicians are receiving a financial incentive for promoting the therapy? There is a conflict in such a patient/physician relationship that I doubt will be made transparent. Will the "clinical outcomes" be reported in an unbiased way?

Might he eventually promote this therapy for "post-lyme" symptoms to the exclusion of antibiotics? The last thing we need is a company with a financial interest in rejecting evidence of chronic lyme infection.

It turns out that ACE inhibitors and ARBs are separate classes of drugs that nonetheless achieve similar anti-inflammatory effects. I checked Dr. Moskowitz's patent applications and it appears that he claims a right to the use of ARBs only when combined with the ACE inhibitors. But the people at www.sarcinfo.com use the ARBs quite successfully without combining them with the ACE inhibitors. So why would anyone pay Dr. Moskowitz's licensees' for the privilege of using ACE or ACE+ARB when ARBs alone will work?

The mere discussion here of the possible use of ARBs for Lyme should constitute "public disclosure" and should therefore preclude any right to patent the use of ARBs for Lyme. I'm therefore uncomfortable with the prospect of a company with the incentive to marginalize the evidence that ARBs may be an effective surrogate for ACE inhibitors.

If you want info on this from people who in fact have no financial incentives, see www.sarcinfo.com They explain the rationale behind this approach in much greater depth than you will find at Dr. Moskowitz's web site.

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Being skeptical is one thing. But you are way beyond skeptical. I was very clear that Dr. M is in this for a profit. But that profit comes in the future. Someone will patent the protocol and someone will become wealthy. Sorry - capitalism thrives.

Every doctor in the world is trying to make a profit. You won't find the details at his website. He will be publishing results (not lyme) soon. The section you read about costs is not what I experienced. Those are for other trials.

I have paid nothing to Dr. M for this treatment. My local doctor has paid nothing to Dr. M. I have paid for a Rx at a local drug store. Which is a lot cheaper than antibiotics. I have been so sick for so many years I don't care who profits as long as they make me well.

All I tried to do was relate my experience to this group. I don't care if you believe my story. I'm sure there are some in this group who will try to verify my results. And I wish them success. I wish you the best of luck with the sarcinfo group.

posted 25 April 2004 15:13            

I do believe your story, which is why I said I intend on trying the approach.

My post was not an attack on your character or motives. It questioned the ethics of this company if in fact it is paying kickbacks to physicians without the knowledge of patients. That's not capitalism, that's a breach of the patient/physician relationship. It's also indicative of what Lyme patients may expect in the future if they ever gain this company's attention in a big way. My concern about their financial incentives is a possible FUTURE incentive for downplaying the need to treat the infection with antibiotics.

I also wanted to make clear that there is a better source of info (not necessarily more valid, just much more in-depth) than Dr. Moskowitz's site. If people want to understand the rationale behind the approach they can learn much more about it at SarcInfo. I was also pointing out that should this company ever market ACE inhibitors to Lyme patients (in the future), ARBs may be a cheaper surrogate since it doesn't look like ARBs will be patented for this. It's just a heads-up.

posted 25 April 2004 16:14            

I did go to sarcinfo and skimmed the article. Very promising and is the same idea.

I don't think we can stop the way medicine is chasing after protocol patents.

To read an interview with Dr. M go to http://www.immunesupport.com/library/showarticle.cfm/id/5007

There is also an article (will have to search for it) about how he quit the VA clinic because the feds were cutting off the ACE Rxs for his patients (kidney patients). They relapsed without the drug.

posted 25 April 2004 16:20            

quote:

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Originally posted by Lymetoo:
j123, if you've had Lyme for 25 yrs and you've only been on abx for 13 months, then you'd be VERY fortunate to be able to stop them now. If/when those symptoms return, be sure to get right back on the abx!

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Maybe the goal isn't to kill the spirochete. Maybe the spirochete messed up our immune systems. Antibiotics never cured me. If my symptoms returned I don't think antibiotics would help me.

posted 25 April 2004 22:34               

I got Lyme after that, and I've been taking abx for l4 months, so if Cozaar does what this doc projects it will do for Lyme, I can expect to be "cured".

I'm for it! I can say that Cozaar does keep blood pressure in range. Good drug.

I hope this doc is right.

posted 25 April 2004 22:41               

quote:

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Originally posted by J123:
If my symptoms returned I don't think antibiotics would help me.

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oops!
Lymetutu

posted 26 April 2004 08:01            

I agree with you completely.

Dr. (PHD) Trevor Marshall (www.sarcinfo.com)
suffered with Sar for decades.

His abx protocol coupled with the ARB (Benicar) has helped many people who have Sarc. There has been a pathogen(s) discovered in people with Sarc (and some test
+ for Lyme). It works in conjunction with the abx (and reduces the pain -inflammation- from a herx).

Dr. Marshall has published his protocol, and sells ** no ** products. Sarcinfo is helping
people educate themselves, theirr Drs (who are willing to listen) and these people are improving.

As I have said many times before ad nauseum - the overlap of symptoms between Sarc and Lyme are quite amazing.

The information (about Benicar) is getting out there though - and I will not be surprised if eventually the LLMDs incorporate it in their therapy.

posted 26 April 2004 10:42            

quote:

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Originally posted by Lymetoo:
[QUOTE]Originally posted by J123:
[b] If my symptoms returned I don't think antibiotics would help me.

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[/B][/QUOTE]
Thank You. If the symptoms return I'll do what I've always done. Pray for a cure. 6 weeks ago I was so sick and so tired of hurting I was hoping to die. All the other medications in the past did little to help me.
We need a break through and this may be it.

posted 26 April 2004 10:45            

It may well control the symptoms, but be aware of the "side effects".

Before you make a decision to try a drug be sure to understand the risks/complications that may be involved.

This is not unlike knowing if you chose to use abx, the importance of adding probiotics. Learn all you can before making a decision.

A brief search re: ACE inhibitors follows:

In addition, some ACE inhibitors are used to treat congestive heart failure or may be used for other conditions as determined by your doctor.

The exact way that these medicines work is not known. They block an enzyme in the body that is necessary to produce a substance that causes blood vessels to tighten.

Other medical problems— The presence of other medical problems may affect the use of the ACE inhibitors. Make sure you tell your doctor if you have any other medical problems, especially:

Diabetes mellitus (sugar diabetes)—Increased risk of potassium levels in the body becoming too high, or increased effect of insulin on control of blood sugar

Heart or blood vessel disease or
Low sodium diet—Lowering blood pressure may make problems resulting from these conditions worse

Kidney disease or
Liver disease—ACE inhibitors' effects may be increased because of slower removal of medicine from the body

Kidney transplant—Increased risk of kidney disease caused by ACE inhibitors

Systemic lupus erythematosus (SLE)—Increased risk of blood problems caused by ACE inhibitors

Previous reaction to any ACE inhibitor or previous occurrence involving hoarseness; swelling of face, mouth, hands, or feet; or sudden trouble in breathing—Reaction is more likely to occur again

What are the side effects of ACE inhibitors?

ACE inhibitors are relatively well-tolerated by most individuals. Nevertheless, they are not free of side effects, and some patients should not use ACE inhibitors. ACE inhibitors usually are not prescribed for pregnant patients because they may cause birth defects.

Individuals with severe kidney problems and people who have had a severe reaction to ACE inhibitors probably should avoid them. The most common side effects are cough, elevated blood potassium levels, low blood pressure, dizziness, headache, drowsiness, weakness, abnormal taste (metallic or salty taste), and rash.

It may take up to a month for coughing to subside, and if one ACE inhibitor causes cough it is likely that the others will too. The most serious, but rare, side effects of ACE inhibitors are kidney failure, allergic reactions, a decrease in white blood cells, and swelling of tissues (angioedema).

With which drugs do ACE inhibitors interact?

ACE inhibitors have few interactions with other drugs. Since ACE inhibitors may increase blood levels of potassium, the use of potassium supplements, salt substitutes (which often contain potassium), or other drugs that increase the body's potassium may result in excessive blood potassium levels.

ACE inhibitors also may increase the blood concentration of lithium (Eskalith) and lead to an increase in side effects from lithium. There have been reports that aspirin and other non-steroidal anti-inflammatory drugs (NSAIDS) such as ibuprofen, indomethacin, and naproxen may reduce the effects of ACE inhibitors; however, there is no conclusive evidence that this interaction, if it exists, is important."

Just a "heads up".

posted 26 April 2004 10:58            

It may well control the symptoms, but be aware of the "side effects".

Before you make a decision to try a drug be sure to understand the risks/complications that may be involved.

You are right. Everyone should be aware of the dangers of every medication.

Many of the diseases in your list are the very diseases that ACE inhibitors help. Look at the research.

Once again, my symptoms were becoming intolerable and I'd rather reach for a cure even if there are risks involved. Some of you have not had chronic lyme for many years. For those of you who have not experienced enough lyme misery - you will as the years go by. Chronic lyme only gets worse.

This drug has been used on millions of patients with few serious problems. There are various ACE inhibitors. The new ones have fewer side effects.

posted 26 April 2004 11:18            

I've been talking to Dr. Trevor Marshal this past week.

Folks, IMO, this is vital information and extremely important work.

I am extremely impress with Dr. Marshall and his sarcoidosis work.

To Scott and Barb,

Keep up the good work. Keep posting info on Dr. Marshall and sarcoidosis.

I will be totally honest about my cozaar results. Last night I had a muscle cramp in my leg. But I still feel good - no fatigue, no aching, etc. My symptoms always had a vague "cycle". It's almost like the symptoms try to break thru when I would be due for another bout, but for the most part don't. Maybe more needs to be learned about dose and timing...