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Research that can change your lymphedema

Postby Donda » Sun Apr 22, 2007 1:50 pm

Hi and thank you for all you do to make this such an informative forum!
I'm so sorry to know that your condition is so severe...I know that you are well informed and are using all of the information to create te best possible treatment plan for yourself.
I certainly hope for you that you will be able to have access to a laser and take advantage of it's help. I could not believe that my thigh went from rock hard to "jiggling" again. Who thought I'd ever celebrate a jiggling thigh!
I wanted to make sure that others that may have read your reply realize that there has been a significant amount of research done on the impact of dietary additions and the positive long term significant impat that they can have.
You are correct, I agree that we must be diligent in seeking validation for claims and so I wanted to at least offer a sample of what others can go find.
I'm sure you are aware of this information but for others..who may have read your last response and mistakenly believed that there is not research I wanted to assure you that there is!!! Here is a tiny bit of what is out there.

There is a double bilnd study listed at the bottom from pub med..
Most of this is from the Australian Lymphoedma website..
Also..I have found that the information shows very few incidents with coumarin and that it is in fact still be used and prescribed.

If you read the incidents of concern you will then be able to make a decision for yourself...I have copied them in here toward the end,also there are alternatives that also offer the same benefits with NO reported side effects!
Please forgive me if the info appears in an odd order..I'm cutting and pasting and must hurry to make lunch for my family!!
Here it is!

1-A review (in preparation) found that benzo-pyrones have been tested by over 37 authors in 8 countries, in (effectively) 51 clinical trials. (The word "effectively" is used since different Grades were counted separately if they were evaluated separately.) These are all the trials known to the authors which could be evaluated objectively. The benzo-pyrones were: coumarin, coumarin plus troxerutin, oxerutins (O-(-hydroxyethyl)-rutosides, HR) and diosmin. There were 39 trials of oral and 12 of topical preparations (11 and 6, respectively, were combined with other therapies). In all of them, oral or topical benzo-pyrones significantly reduced lymphoedema (usually to a clinically important extent). In almost all the symptoms were similarly reduced - including infections (Secondary Acute Inflammation, SAI). Combining all 25 trials of oral benzo-pyrones alone, in which the reduction of oedema could be estimated, gave a mean reduction of oedema of 36% (S.E. 6%) per year (1,225 patients in all). There were no significant differences between arms and legs. Elephantiasis was reduced less (15% per year) than Grades 1 and 2 (57%) but this was of course much greater initially. As the dose of benzo-pyrones increased, so did their efficacy. Nor are these drugs merely useful by themselves. Both oral and topical forms, and these combined, very materially increased reductions of lymphoedema obtained by a variety of physical and surgical techniques. In these, they often also greatly reduced the incidence, and the severity, of attacks of SAI.

The year 1993 saw the publication of three trials of oral coumarin for lymphoedema: in Australia and (for the W.H.O.) in India and China. They appeared in: the New England J. Medicine 329 (1993), 1158-1163, Annals. Tropical Medicine Parasitology (1993) 87, 247-258, and the British Medical J., 307 (1993) 1037-1040, respectively. The average reduction for Grade 2 arms was 2.2 % of the initial volume per month (or 40 % of the oedema in 6 months); that for Grade 2 legs was 1.5 % of the initial volume per month (or 33 % of the oedema in 6 months).
An analysis has been made of the first 628 Australian limbs treated with C.P.T., with and without the benzo-pyrones (Lymphology, 20 (1996) 76-82, and see Section on Results ). Both oral and topical benzo-pyrones increase the already large reductions which Complex Physical (Lymphedema) Therapy (C.P.T.) produces in lymphoedema and elephantiasis. A typical one-month course of C.P.T. gave average reductions of 13 % of the initial volume of a Grade 2 arm and 11 % of a Grade 2 leg; these were improved by a further 5 % if oral benzo-pyrones were taken for 3 months before the Course started, and by yet a further 2 to 3 % if topical Coumarin was used as well. During the next 12 months, some limbs increased in volume, others reduced still further. Oral benzo-pyrones improved these reductions by 10 % of the volume at the end of the first Course of C.P.T. The next Course of C.P.T. by itself gave a 16 % reduction relative to the limb volume at the start of the Course. Again coumarin ointment gave a further 11 % and powder a further 16 % improvement. Patients at risk, after operations which cause lymphoedema, are less likely to get it if they take benzo-pyrones prophylactively. It also considerably reduces the oedema of accidental trauma to the limb (cuts, bruises, fractures, burns, stings, etc.). These are also often greatly helped by topical coumarin (cream or powder).

Similar reductions to those obtained with coumarin have also been observed with the (bio)flavonoid Paroven - also called: Venoruton, Relvène (British J. Plastic Surgery, 41 (1988), 20-27). However note that the doses of this need to be much larger (3,000 mg/day rather than 400, as with coumarin). Another benzo-pyrone - diosmin (Daflon 500®)- has also been shown to be effective in lymphoedema (Int. Angiol. (Suppl) 14 (1995) 39-43). Again the doses of this need to be much larger (2,000 mg/day rather than 400, as with coumarin).

Some similar drugs, which are not strictly-speaking benzo-pyrones, are also effective. These include Unguentum lymphaticum® (however this can only be applied to the skin) and Doxium®. A double-blind trial of an extract of Ruscus aculeatus (mainly ruscogenin and neoruscogenin plus hesperidin methyl chalcone) over 3 months, reduced oedema by 13%, compared with a 9% increase in the controls, symptoms were improved significantly (Lymphology, 29 (1996) 29-35).

Benzo-pyrones reduce all high-protein oedemas by causing macrophages (scavanger cells in the tissues) to increase both their numbers and their normal lysis of the excess protein. Thus the increased colloidal osmotic pressure is reduced via this alternative pathway for the removal of protein. This can be detected about 4 hours after administration and is maximal by 24 hours.

However some of the actions in lymphoedema are much slower than this since it takes many months to remove the accumulated excess fibrous tissues. The removal of protein and the excess fluid this causes (and its other deleterious effects) starts within days, but he effects of this are usually not obvious for some six months because of all the fibrous tissue.

Many benzo-pyrones also improve pumping by the collecting lymphatics, again aiding in the removal of the oedema. Some consider that this is how they act, but at least in animal studies it is evident that proteolysis is much more important (although increased pumping by any remaining lymphatics must also help).

Benzo-pyrones seldom affect the underlying condition but, by reducing the excess protein, reduces the oedema and its sequelae. They enhance another pathway for the removal of protein and water from the tissues when the lymphatics can no longer handle these.

If the oedema is within 1 - 2 cm of the surface of the skin, topical applications (the powder or the ointment) are suitable; if deeper, the oral form is also necessary.
No serious side-effects have been reported for the flavonoids mentioned here, in spite of being used by very many people, all over the world, for many years. About 1 % of people have minor gastric problems, as with coumarin.

Coumarin has been used in clinical trials for over 30 years, in many countries, and in over 100,000 patients. It may cause initial mild nausea or diarrhoea. So, we advise taking it with food, even a part of the dose at each meal (if these persist as a problem). Coated tablets or delayed-release capsules help this greatly (so that only 1 % of patients have it). A few complained of mild dizziness or drowsiness. All these side-effects went after the first month. No patient ever withdrew from a trial because of them.

No interactions with any other drug have been demonstrated, including any chemotherapy.

A few patients (about 3 per 1,000) may get an idiosyncratic hepatitis (between 3 and 9 months). This returns to normal if the drug is stopped. {Details of this have been published: Human Toxicology 8 (1989) 501-506 and Medical J. Australia 162 (1995) 391.}. Independent evaluators have reported no 'definite' case, 20 'probables' or 'possibles' and 43 'unlikelies' or 'no-relationships' from the only 75 cases from all over the world reported to Sep 95 (only 63 of which gave sufficient data to be evaluated).

The incidence does not vary with the dose - neither daily nor cumulative, but may vary with the preparation. There have been four deaths among the patients all over the world who have been taking coumarin. One of these was "probably" associated with coumarin, three "possibly" were. This death rate has been estimated as 3 per 10,000.
Most who prescribe coumarin do not use routine liver-function tests, but some now do so. If they are to be used, it is best to perform a test before starting the drug and then at monthly intervals for one year (no case has been reported after 9 months).

The frequency of secondary lymphedema occurrence following breast cancer therapy has been decreasing since new conservative surgical treatment and radiotherapy are applied. However, about 20% of female patients treated for breast cancer will develop mild swelling of the arm or forearm and seek specific treatment. Decongestive physiotherapy remains the most effective treatment, although medical treatment is often necessary. Coumarin, tested both in vitro and in vivo, has yielded true stimulation of lymphatic function. Like other benzopyrone derivatives, coumarin acts through macrophage stimulation. A randomized double blind study versus placebo has confirmed the occurrence of significant improvement of these mild swelling cases, and recommend the use of coumarin as supplemental therapy in mild lymphedema.

PMID: 2358758 [PubMed - indexed for MEDLINE]

Ahh so much info...I'm still creating my final aggressive plan of is being suported by all the research I have been collecting.
I hope for each of us that we will research and share what we experience.
Good luck and be proactive!
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Postby patoco » Sun Apr 22, 2007 2:00 pm

Hi Donda

Thanks for your reply.

There is much research going on and I do look forward to the results especially concerning the benzopyrones.

But, please, don't take coumarin. I'm not even sure it is available like it used to be. Don't want any liver problems.

Also, the studies you showed are ancient by medical standards, so we need more upto date info and still there is nothing to back up Poppy's claims on their lymphoaction product.

be safe, be well.


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laser one therapy

Postby eve alvirIII » Mon Apr 23, 2007 5:30 am


To Donda and Pat O:

Donda - that's a piece of exciting news. Can you give us more detail on the purchase of such a gizmo. Whom to much it costs (+shipping and handling), etc.

Pat O - please let us know on this forum what ever happened to Sara? She also had a positive experience in Australia.

I have written (and posted my letter on this forum) to Mark Knight, President of Biohorizon Medical Inc. - regarding laser therapy and the forthcoming workshop in New York. NO REPLY.

Also, is it true that the NLN Patient Summit to be held in Georgia has been cancelled?

Thanks for your attention.
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Postby patoco » Mon Apr 23, 2007 7:39 am

Hi Eve

First, it is true that the NLN has cancelled their conference. But,
a patient conference - same time - same place is going to be held. THis will be sponsored by the Lighthouse Lymphedema Network.

As more info becomes avilable, I'll be putting it out everywhere.

Now, as for the laser - yes, it does seem to be a very helpful and proven tool. There are clinicals to back it up.

As for coumarin, no. It is toxic and infact there were many clinical available before this was used for lymphedema showing its toxcicity. It would be reckless and dangerous to suggest someone use it.

As for benzopyrones and that group - there are studies going on and some of them "may" be helpful. But be forewarned, the verdict is still mostly out.

This forum supports evidence based medicine and I always insist that any claim needs to be backed up with double blind clinical studies that verify its effectivenes AND safety.

In my 54 years of lymphedema, I have seen too many people injured from unfounded herbs, medicines and supposed cures. I've also seen people crippled and disfigured from surgeries and pumps - all that were supposed to help.

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again...regarding laser therapy

Postby eve alvirIII » Sat May 12, 2007 1:35 am

To all,

This is a p-mail reply from Ann Angel: Forum Index
Inbox :: Message
From: aangel
To: eve alvirIII
Posted: Wed May 02, 2007 2:04 am
Subject: Re: laser therapy workshop in New York
Hi Eve

There will be a workshop in New York in June.

Stay tuned


I'm still persistent on laser therapy. Donda Combs of Florida wrote to say that the laser helped her fibrotic leg to a "jiggly" state. We spoke on the phone. Of course, she and I agree that manual lymph drainage, exercises and seeing your therapist for maintenance are still "musts." I myself have gone back to therapy, this time with a better one in Woodbury, New York. There are two doctors, one PA and five therapists in this clinic and they're all wonderful.

We'll see about the laser workshop (by Rian Corp.) in June, here in NY.

Happy Mother's Day to All.

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Postby Connie » Tue May 15, 2007 9:48 am


Can you suggest what type of doctor I should seek out for drug therapy? When I went to a lymphedema specialist all they suggested was massage and wrapping.

Also I noted that you said the laser softened your fibrotic leg, but did it reduce any of the swelling?

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Postby eve alvirIII » Fri May 25, 2007 9:37 am

Hi Ann,

Thanks again for the info on the forthcoming no-cost Laser Therapy Workshop to be held in New York, on June 6th at the Marriott Hotel (1350 Walt Whitman Rd.). The therapists and doctors at the clinic where I have my therapy will also be attending. I have left my rsvp message to Mark Knight at 866-914-5159 ext. 103.

This is also TO Donda Combs: we'll follow your lead and probably get rid of the fibrosis in our legs. I know this is not the cure-all, but a very good tool to help relieve our condition, in addition to the well-accepted therapy of MLD and bandaging.

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Low-level laser therapy - use of the LTU-904

Postby eve alvirIII » Tue Jun 12, 2007 7:08 pm

Hi All, :P

Just to report that I have attended the LLLT Workshop ON jUNE 6, 2007, at the Marriott Hotel in Melville, Long Island, New York. It was presented by Mark Knight, President of BioHorizon Medical Inc., Ann Angel, Director of Rian Corp. (Australia) and Lynn (lost her card), therapist from Australia. In attendance were 6 New York therapists, a surgeon from Pennsylvania and one patient (me) and my husband.

The first part of the Workshop was very technical, with charts, double-blind studies held, background, methods, etc. The last part was where I was asked if they could try the handheld battery-operated LTU-904. I think it was the most impressive, as everyone gathered around me and Lynn gently pressed the unit twice on my calf, and about six times on my very hard, fibrotic foot. Everyone felt the areas and can't help but be impressed at the quick result of softening skin!

I'm very, very mystified that the lymphadema community of New York is nonchalant, over-cautious and non-responsive to this seemingly WONDERFUL DEVICE. There are dozens of therapists and doctors in this area and only one came from out-of-town and a handful of therapists (three of whom are from the clinic I go to in Woodbury). Why don't they want to acquire this unit and HELP the desperate patients in conjunction with their manual drainage massages and bandaging. I read such sad despairing stories of rock-hard fibrotic arms, legs and torso and I see them limping along at my clinic...but this tool is ignored!

To Donna Combs: please let me us know about your progress with the purchase of your LTU-904 unit. Is the swelling gone, including the upper portion of your body? You wrote excitedly and I spoke to you on the phone and you are evidently so happy using the Unit. Without cornering you and holding you in any way to recommending this tool, would you say I could make use of it? My children will chip in in the purchase of the LTU-904 since insurance won't pay for it ($4000 :cry: ), and none of the New York therapy places are purchasing it for use of their patients. It is indeed very expensive, but my insurance pays $350 to $700 per treatment, so what's $4 grand to get rid of my fibrosis?

Greatly appreciate all your attention.

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laser therapy

Postby eve alvirIII » Mon Jul 02, 2007 3:26 pm

Hi everyone,

Just an update: I was in the process of acquiring the LTU-904 (low level laser by BioHorizon) either by direct purchase. Luckily I have been advised that my health insurance will cover the cost and will be getting the prescription from my lymphedema doctor. In the meantime my Therapy Clinic (Woodbury, Long Island, New York) advised me that they are acquiring the demo laser to use on lymphedema patients. I was told to try it with them first before the doctor gives me the prescription for personal use. I feel that this is a great opportunity to try out the devise and be well instructed on its use.

I hope all your therapists will take the offer of BioHorizon for a thirty day free demo of the laser. At long last the lymphedema caregivers will give this FDA-approved tool a shot.

Have a great Fourth of July!!

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Re: Laser Workshops

Postby donsuzbee » Sat Jul 19, 2008 11:49 am

Is this the last post re: the laser treatment? I see that Bandages Plus is now selling the device. Any further word on effectiveness?
God bless!
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Re: Laser Workshops

Postby patoco » Sun Jul 20, 2008 9:04 pm

Hey Susan :)

From everything people say, the reports keep coming back positive on how it helps. Evidently, that laser works quite effectively on scar tissue.

Also, the studies being done are supporting that too.

Are you going to get one?

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