She has been suffering from progressive
fluid retention/edema for 15 months and was diagnosed in March, by endoscopy, with an extensive GI yeast infection.

This has caused a "leaky gut" in which food molecules and toxins get directly into the bloodstream from the gut, causing reactions to foods she normally wouldn't react to, and a total weight gain of 30 pounds of fluid (while eating 1000 calories or less a day). Needless to say, this situation has caused despair for a 15 year-old girl.

This situation seems to have resulted from the combination of type 1 diabetes and Lyme antibiotic treatment, unfortunately. I believe SSRI's for her long-term daily headache also played a role.

For the last year, she also has been peeing as little as 1/4 cup only in 24 hours, no matter how much she drinks. She had protein in her urine for awhile too. Kidney function obviously not normal.

Recently, her edema has become extremely noticable and it "pits" when you press it. Also, the site of her headache, on top of her head, where she has been saying for 2 years that it is "swollen," in now obviously bulging and pulsing to the touch during a headache.

Doctors finally believe her (and me) and a three day trial of a diuretic cured the headache after 2 1/2 years!!! The body swelling and headache are apparently from the same cause...She has missed months of school with this headache, and noone could find a cause...

So the new doctor spent 90 minutes with her and prescribed the new diet, along with some enzymes, to see if the fluid retention could be addressed naturally (no diuretics). He has also tested her adrenal function (re cortisol, aldosterone too), and thyroids. And he sent Lyme, co-infection, mycoplasma etc, testing to MDL. Yeahhh! Finally, a doctor who listens and takes some time.

I just can't believe this. On the diet, her headache is better, she is peeing all day and gets up at night to pee, and has lost some weight. Also the horribly hard-to-manage blood sugars that she has had for 15 months have stabilized amazingly.

I am just amazed. I am the world's biggest skeptic and thought we would do the diet just to satisfy this doctor, before we got to the "real" solution.

She is still swollen but we are hopeful. Hope is unfamiliar around here, believe me. We survive on black humor.

We are adding exercise (not too strenuous, and swimming is perfect) and massage of cellulite, possibly lymph drainage too, to the regimen.

Hope this is encouraging to folks with fluid retention. Will keep you posted.

p.s. massage for cellulite is vigorous (to separate fat and water), massage for lymph drainage needs to be gentle (too keep the system open)...anyone know about this at all?

Is this the first she has been tested for lyme and co-infections?

I hope the doctor is good.

And so glad a bit of relief is in sight.

I'm so happy to hear it's working and she's getting some relief.

Now that I am on iv, leaky gut is better,
but I sure would like a diet plan beyond
what I have been rotating to gain some
more weight.

We are working with a naturopath, ND, who is Lyme savy and is addressing some issues such as adrenal, thyroid, and kidney function. Would like to ask you some more questions...would you mind e-mailing me?

Thanks to everyone for all the nice messages. We are waiting for test results on thyroid, adrenal function, Lyme and co-infectons, mycolasma etc, etc. She had low thryoid in 2002 and 2003, and I almost wish the tests would be positive at times!

Headache continues to be much improved as is swelling in arms and neck. The top of her head is not bulging or pulsing, even w/weather changes. However, lower body still has major fluid retention w/purple stretch marks that come and go w/the swelling.

She has overcome her embarrassment and is swimming. Exercise is good! Has to wear big swimming shorts to cover her thighs and bum, which are all swollen and have those streaks.

We are also trying vigorous massage (bought cocunut oil yesterday) to try to free the water from her tissues (although I am checking w/doctor to see if we should be doing gentler lymphatic drainage massage, since her lymph nodes are huge).

Right now, my daughter is on a basic elimination diet, which for her means no wheat/gluten, no milk, eggs, citrus or grapes, no tomatoes, corn, peanuts, no vinegar, no yeast or mold-containing foods, soy, sweets.

She can eat most vegetables, potatoes and sweet potatoes, Granny Smith apples, pears and berries, rice, rice cakes, rice cereal,rice tortillas, fish, poultry (pork and beef are being reconsidered and may be eliminated), dried beans, lentils and peas, and tuna if it has no salt, broth or hydrolized vegetable protein. Rice or almond milk is okay, and nut butters other than peanut (cashew, almond, or sesame).

Most herbs are okay, and we are using only olive oil (canola, safflower, sesame, sunflower and cocount oils are okay). Beverages only water and apple or cherry juice for low blood sugars as needed (she is on insulin for diabetes). We are trying to keep all this organic if possible.

She cannot have glucose tablets for low blood sugars,as they are corn-based. This is challenging.

Most herbs and spices are fine as long as they are natural, pref. organic and definitely w/out preservatives.

Everything is cooked from scratch to avoid mistakes, and minimize additives. Fruits and vegetables are washed thoroughly to minimize toxins like pesticides or fungi leaking through her "leaky gut"), some people do a dilute bleach wash (we may do this).

If she really gets a lot better (it's only been a week, maybe after 3 weeks) we will reintroduce foods one-at-a-time as a "challenge test" to see if she reacts. Anything that causes a reaction will be eliminated longer term.

The main improvement seems to be in the dramatic increase in frequency and volume of peeing, which is remarkable.

The other BIG imporovement, interestingly, is in her blood sugars. The food sensitivities were causing major highs after eating. Then again, once we adjusted insulin for these highs, she would have lows if she didn't eat an offending food. Also, the swelling caused the subcuataneous insulin to be diluted. Those of you out there dealing with diabetes understand what this all means.
Basically, a year long struggle with blood sugars that insulin changes could not begin to address, that doctors couldn't explain, that made us feel helpless no matter how hard we worked.

We are now hoping that the swelling will improve more. The changes in her arms are subtle (and we have to allow for the fact that the swelling fluctuates within a day), but apparently even a subtle improvement has helped the headache that she has had since Jan. 2003.

She is also taking Similase, "complete digestive enzymes" to help with digestion.

The doctor wants to put her on a stronger fluconazole regimen. The other doctor put her on 100mg for 3 weeks, then 4 weeks.This new doctor does 200mg for 2-3 months. He is considering the best timing for this treatment, and liver tests were done.

At some point he will also do things like L-Glutamine but says that right now that is putting the cart before the horse. he wants to focus on stopping the damage from food and yeast (the endoscopy showed both gastritis and a lot of yeast in her GI tract).

A lot of this is standard food allergy elimination/challenge testing, along with treatment of the leaky gut. But the combination of type 1 diabetes, long-term antibiotics (and quite possibly continuing Lyme and other as yet undiagnosed infections), yeast, and adolescence has made this very complex.

The fluid retention/weight gain is no longer subtle at all, and can be observed by any medical person who sees her.

For anyone who doesn't know her medical story, it is complicated, starting with very frequent, sudden-onset pneumonias at age 3 to type 1diabetes (autoimmune attack on pancreas), to sinus surgery, knee and ankle problems needing surgery, autoimmune illness w/joint and muscle issues, multiple courses of physical therapy, bipolar psychosis on tetracycline,chronic daily headache and migraines, complex partial seizures (losing time), and for the last year, this 30 lb. weight gain from fluid, which causes pain (and depression).

She missed a lot of school in Middle School but just had a good Freshman year at the high school, where they let her go in and out of school as needed, often within the same day. She did great academically this way, and also participated in 5 plays, and did a lotrof music stuff. Socially, the other kids all admire her and she is very funny. If we could solve this issue, things might even be okay for her (diabetes seems like a piece of cake now).

She was treated for Lyme from Dec. 2002 to Spring 2004. She is currently unable to tolerate treatment with antibiotics.

Di, how are the IV's going for you?

Sorry this is so long...and repetitive. I have Lyme! Can't remember what I've said before and it's hard for me to check. Sometimes I feel a little old and doddering (and stressed).

For those with fluid retention, I will repeat that "The Waterfall Diet" book by Lazarides is excellent, and the sites I found with Yahoo under "fluid retention". I can find them again if anyone out there needs them and didn't see my first posts on this topic.

My headaches (2 1/2 years worth) are nearly
gone and I have gained weight, become more
energetic and began to have more mental
recall.

I have balance again so I can walk further
and ride my bike further. My blood pressure is no longer in the cellar and my temperature is in normal range, but can go
up in afternoon. LLMD says low grade fever
can be good as it indicates body is fighting. MCS is still around, but seems to vascillate. I find I can tolerate some things better, but I imagine it will be a long odyssey with the twists and horrible turns that accompany it.

I noticed she's on a basic elimination diet, including no wheat/gluten, no milk, eggs, citrus or grapes, no tomatoes, corn, peanuts, no vinegar, no yeast or mold-containing foods, soy, sweets.

We are adding red meat to avoid, based on observation (now that the picture is clearer we can even observe individual food that she is eating while on the diet). Red meat and non-organic white meats are excluded in the Waterfall Diet, but the nutritionist at the Marino Center was including them sort of on probation.

I forgot to mention of course avoiding salt.

She is going to try sardines in olive oil for variety. Cucumbers seem to be good, and are a natural diuretic supposedly. She just had a rice tortilla w/grilled chicken and cucumber for breakfast. Chicken, green beans and sweet potatoes are the current staple, along with green apples.

Just to clarify, the Marino Center is an alternative medicine center in Cambridge Mass. We spent 3 horus there last week, and they never used the term "Waterfall Diet."

However, thansk to Lymenet, I had already purchased that book, and
I read it after our time at the Marino Center. The program in the book is virtually identical to the one prescribed by the Marino Center.

Also, the book deals with a lot of the same issues that the Marino Center doctor is looking into. Allergic fluid retention is the number on thing to try. But there are other possibilities: protein deficiency, kidney stress, problems in the hypothalamus w/hormones, like cortisol and aldosterone, adrenal or thyroid problems, vitamin (esp. B vitamins)and mineral (esp. Magnesium and Selenium) deficiencies, various medicines (SSRI's and tricyclics, NSAID's, high blood pressure med of many types, steroids,hormones, cephalosporins, bactrin, toxins causing "internal pollution," (requiring liver detox), leaky capillaries, blocked lymphatic drainage, insufficient exercise, and maybe a few I've missed.

there's a synergy here so that we are trying to hit a number of different angles.
Like ArtistDi says, this process of rebalancing may take time and patience, but both the booka nd the Marino Center expect the swelling itself to improve withing 2-3 weeks from the start of the diet.

My daughter hides in skirts. last night she asked for a massage to help with the process and I was amazed at the progress she had made. Her upper arms, which made a prom dress impossible in May, look good and her lower body looked better last pm for the first time.

They said she would get worse first, and she did. She peed more, right away, but her headache was excruciating and her whoel body REALLY swelled up for about 4 days at first.

I haven't met with Susan Carrol, but I've heard she's excellent. Is that who's helping your daughter formulate her fluid reduction diet?

Susan was most useful in directing us to brands or companies, and stores that carried certain products. For instance, only the health food store in Stoneham carries these rice tortillas, at least in NE Mass. We learned that Scottish oats are not contaminated by nearby wheat fields as Quaker Oats are (actually, forgot to mention, oats are also off our list for now, there is debate about their inclusion).

Susan recommended Metagenics UltraFlora and Custom Probiotics (mail-order, freshly made) as well.

The people in the Stoneham store said that some people come in the store in tears after seeing Susan, that she needs more "compassion," but although her manner was at times strange, we thought she was very helpful.

I did have some of the same problems that your daughter is experiencing now, but it was about a year and a half ago.

I had terrible edema, leaky gut, and blocked lymphs. The only course that I could take then was to stop all meds, and begin Questran followed by L-glutamine.

A lymph massage that I had at the time actually contributed to the problem by releasing too many toxins into my body all at once, thus catapulting the edema response.

I will look into the book, thanks for sharing all that you have learned!

It sounds as if you are on the right path with your daughter now, and I wish you both all the best!

Melanie

I also wondered (I'll check your other post) if you are back on antibiotics at all...

Isn't this fun going back and forth between two posts?

My massage was while I was in Costa Rica with the Lyme group last Feb '04. The masseur didn't speak English, and I didn't speak Spanish...so it was interesting indeed. I didn't know what a lymph massage was back then, but soon found out the hard way!

It was one of those ``it hurt so good'' things. Every place that he touched was so sore, and he gently but firmly rubbed all of the hot spots for about 45 minutes.

I was already in pretty bad condition at the time. Toxin overload...and the massage made matters worse by releasing more toxins into my body. So, I would suggest that extreme caution be used when deciding on this procedure!

Yes, I am on ABX- Mino and bactrim, plus diflucan for Candida, diamox for the headaches, and the K-tabs for the diamox. I also use an Albuterol rescue inhaler daily.

Yes, I do think that exercise releases toxins, so I would advise caution here as well, you really don't want to release too many things all at once without being able to rid the body, and if your daughter has leaky gut too, this can cause a problem.

This is why I was put on Questran for a month, followed by L-glutamine...to absorb the toxins, and then rebuild the gut. It is a slow process to rebuild what has been destroyed...so please take it easy at first with not too many changes.

She's been swollen for so long, and it is so hard for a 15 year-old, but I think we are understanding, finally, that this will indeed be a long process of rebalancing.

I'm really glad you got back to me on the massage and exercise. You get a little positive momentum going and you want to do more...I think avoidng harm is the main thing right now.

My few symptoms now are really not so bad when I look back on all that has transpired. I am grateful to be making improvement, and yes, it is a slow process.

We didn't get this way overnight, and we won't be fixed that soon either

Your daughter is very fortunate to have such a loving and devoted mom on her side!

Take care,
Melanie

It never ceases to amaze me that you also have Lyme..and rise up to manage so much so well, for your daughter.
The way that you have Diabetes so well understood as works best for her as an individual..
and now your understanding and applying all of this new work.

Your daughter's blessed with you. I'm so glad to hear about the kindeys flowing again!

We have taken different approaches to some overlapping core concerns, but not really with many of the same specifics..
but when you mentioned moving Lymph, I thought I might suggest checking into using a rebounder..
a very gentle movement called 'the health bounce', on a rebounder (looks like a mini-trampoline, but better springs, and is not that expensive)..
the 'health bounce' is just standing and bouncing on it (some come with a bar to hold), where your feet never leave the tarp.

This is very effective at moving Lymphatic fluid..
and easy to do at home for just a few minutes a day.

maybe you'd want to check it out and ask Doc..

Otherwise, I know lymph massage is very specialized..I know some who have seen a masseuse for it, but that can get pricey depending on how often you need it.
As mel said it can be intense, tho -

The other thing that moves/drains lymph is dry bristle brushing.

You can find it described in natural health resources..I know it's in the book 'Prescription for Natural Healing'..
and basically, you use a long handled NATURAL bristle skin brush, and do this on dry skin only.

raise arms and start there, moving the brush in circle motions covering all the skin, and always brushing toward the heart.

Don't do the face..but do arms, under chin, shoulders, under arms, back, up legs thighs and bum..always brush toward the heart, and you work your way from each part of the body and continue 'moving' the fluid till you sort of imagine 'dumping it' into the chest cavity at the end of working each area of the body.

Moving all steadiy down the arms - neck - shoulders - back into the chest cavity, up the legs and hips - stomach into the chest cavity... ect..
always in these small circular/half moon sort of brush strokes. I hope this makes sence.

If you did it right, you should have to pee.

This also must always be followed by a shower.

Hope some of this helps..rebounding really can work well, as can the skin brushing.
Cellulite always responds well to both these things, I assume most cellulite is blocked lymph.

Best to you both, wishing you continued improvement.

Mo

Mo, I really appreciate the info on lymph massage. The local chiropractor echoed what you said, that it is very specialized, and is researching it for me. I thought maybe, due to the affordability issue, a practitioner could teach me to do it.

The rebounder and/or the brush are other things to look into.

(you also are getting dead layer of skin off with the brushing, which aides in skin detox)

But, maybe a long HOT shower IS best in that reguard, or even a detoxifying herbal bath, I would think...better yet.

People sometimes underestimate the eliminative powers of the skin as the largest organ, and whenever you do something to move toxins, following it with a detoxing bath is really helpful, and can also avoid blocking toxins on the move..

I also saw it in my own experience, when I was doing a veggie juice fast which was moving allot of toxins..the nights I did NOT take the bath, the next morning I had allot of inflammation and joint pain..
the nights I did take it there was a notable difference.

Mo