I just found a site with a picture of exactly what happens to her each day:
www.cowdens.freeserve.co.uk

Her body expands dramatically at times, with swelling in hips, thighs, bum, upper arms, breasts, and extreme bloating in abdomen. She can't fit right in clothes that fit her at other times. This swelling causes purple stretch marks that go away when the swelling is somewhat better.

This is also called "ideopathic edema" or "cyclic" edema although "fluid retention syndrome" is a more recent name for the problem, since there really isn't that much of a connection with the menstrual cycle.

This daughter also has type 1 diabetes which might contribute. In turn, the swellingw/fluid makes her insulin absorption changeable and so blood sugars are hard to manage.She's also had low thryoid, but not this past year.

If anyone looks at the picture at the cowdens site, about 2/3 of the way down the page, and can relate, please let me know.

I am wondering if Lyme is playing a role in this. It is clearly a problem rooted in the brain. The hypothalmic and limbic systems are perhaps involved, and also maybe female hormones. Leaky capillaries result in fluid moving out into tissues.

My weight fluctuates by as much as 7 lbs in a day. I also had to get up to pee during the night for as long as I can remember. Some years I got up once or twice. More recently hourly and finally now None!!!

I've tried exercise, reducing salt...Nothing seemed to help. It would be horrendous when I was pre-menstrual and a few days into my period I would have a day where it was hard to go out because I had to pee so much so often. I would pee away many pounds and feel better for a week or so and then it would start again. Eating green beans would help get rid of some of the water.

I have always had to pee frequently in the morning which would make it hard to go out.

In hot weather I would drink lots of water and every bit of it would be retained. Summer made me miserable and I did not seem to have a normal cooling mechanism. I have had marked improvement with this the last few months. Yesterday I was out in the heat and did not feel nauseuos or headachey as I usually would. This morning I weigh the same as I have for 4 mornings in a row. This is progress.

So, what has made the difference. I think the Lyme treatment has helped a lot. I went off birth control pills a few month's before I started Lyme treatment but didn't notice a difference in bloating. As soon as I started Lyme treatment my nightly peeing schedule began to change. Each new drug has changed it more. While I was on tetracycline I was hungry all the time and my weight fluctuations were large. I did start sleeping through the night though. I also quit coffee when I started tetra (It made it taste awful). As soon as I quit coffee I did not need to pee so much in the morning. Quitting coffee made a big difference. It seems that the diuretic action in the morning triggered my body to save water the rest of the day.

I just finished my first month of Plaquenil and Biaxin and have seen huge progress with the way my body handles water. I don't get up in the night. My weight is more consistent. I don't need to pee as often although there is more volume when I do pee. I am adjusting better to the hot weather and feel like water is now performing it's proper function.

The anti yeast diet has also helped a lot. Since switching to Plaquenil and Biaxin my appetite is less and I eat mostly salads, nuts,sauteed vegetables, and a little fish, meat, eggs. I've gotten stricter on the diet and it seems to make a positive diference. Absolutely no grains, sugar or fruit and very limited dairy.

The bloating before my last 3 periods was not too bad and I had the first pain free periods of my life.

Conclusion: I believe it is the Lyme treatment that has eliminated painful periods, reduced bloating, reduced (maybe stopped) frequent night time peeing, normalised peeing throughout the day, made me more tolerant of heat... Other things that helped are the anti yeast diet, quitting coffee, regularly drinking water.

I am fairly certain I have had Lyme most of my life and the fact that lifelong symptoms are going away with Lyme treatment seems to support my theory. I don't know if it is the Plaquenil, the Biaxin or the combo but these drugs are making a big difference with water issues.

I also have squishy bottoms of my feet and around my ankles and legs.

I think the greatest concern should be whether these symptoms are dangerous, or more of an annoyance.

Doctors who have seen it aren't especially concerned since I have no cardiac problems.

This is a very uncomfortable condition to live with!

I am finding that aside from the Lyme (tho I'm sure clearing infection helps allot in allot of ways)
but with or without Lyme, a basic need for health is that all eliminative organs are cleared and flowing in the right direction.

None of the MD's will look at that core issue of health!
Some alternative type Docs will..

Even MD's (in the age before pharmaceutical domination) learned they could cure many serious conditions simply by restoring eliminative organ health.
(not saying our conditions can be cured by this, just making the point that it is that critical to health and could at least help allot)

ie: The bowel is clogged if you are not going 3x a day, well formed, not hard BM's where you don't have to wipe.
I know after Lyme and all the meds, I was nowhere near that, even tho I didn't seem to have a big problem there..
So, if that's clogged, so is the liver and GB (conjested), and likely with chronic infection and meds, the kidneys are not clear and flowing either..
all this backs up into the blood and the lymph system.

There are many schools of thought on 'cleansing' but I have found the concept quite simple, tho it takes time and dilligence to get everything clear and flowing, but the results are long lasting.
Forever if you maintain clearance.

First, cleanse the bowel (which includes parasite cleanse)..
along with the bowel you can begin cleansing kidney. (effective herbs beyond the mild dandilion may be needed, pulsed over many weeks)

Several weeks dedicated to this, and things start flowing and changing from the removal of those "dams". Swelling indicates blockage...somewhere along the line, or maybe in a few places.

Only when things are clear and good in the intestines and kidneys, should you move on to cleansing the liver, GB, and then lymph and blood.

I am not saying thses are the only causes or concerns, but this 'flow' is a basic need for the human body to function and heal at any level..
especially when chronic infection and meds are a part of the picture.

I've been studying for myself and applying this to our cases, tho you could also find a practitioner to assist you, depending on who you can connect with..
There is allot of info readily available, tho, and you may be the best judge as to what makes sence, should you feel this would be helpful.

Best,
Mo

Mo, we have been waiting for months to see this alternative doctor, who is highly recomended but has been away. My daughter sees hiim on 6/23. Some of the research I have been doing is just to help with that appointment. The urgency I feel as a mom goes up as my daughter's
spirits go down! (She is, as I have said repeatedly on Lymenet, an amazingly stoic person- which makes her depression all the harder to watch).

I have also gotten documentation of her swelling, variations in size, bulge and pulse on top of her head during headache, in other words of all these strange and variable phenomena, from the school nurse and also massage therapist. The school nurse has gotten very involved in this whole thing, and is increasinlgy frustrated herself with the lack of help (and even hostility, as MO knows) that we have run into.

Hatsnscarfs, my sympathies! I am so glad that you are making some progress. I am also glad the site was helpful. Could you believe the picture? That's exactly what it looks like!

I looked under "fluid retention syndrome," "idiopathic edema," and "cyclic edema." Since yours is somewhat tied to hormones, all of these terms might apply.
Other sites were www.wdcyber.com/ugen17.htm and another good one that I'll look up again (can't read my own writing).

Lhm, Iknow what you mean abot this not being immediately dangerous, in the sense of being associated w/heart, lungs, brain etc. However, this is very, very distressing for a newly developed, teenage girl and dangers associated with depression are a haunting possiblity.

Also, the possibility of a life-threatening eating disorder sort of hovers inthe air. It takes great bravery but she continues to eat normally (well, around 1200 calories a day I think) despite a great desire to eat less. She knows that eating less will only increase the edema though.

Also, with the diabetes, this is quite dangerous at times. I swear that the pump insertion site(the place where the cannula is inserted subcataneously for insluin delivery) swells also with fluid, which must dilute the insluin delivered, because she gets extreme highs at times, for no reason. Then again, if we adjust the insulin and then the swelling goes down, she has several lows, which are potentiall quite dangerous.

The site I posted up top has a lot of information about the close association of diabetes and edema/fluid retention syndrome. Something about insulin receptors in the hypothalamus/limbic system.

Today, I counselled my daughter to take a long walk with me, guided her eating towards low calorie, low carb, high protein meals (no gluten, no yeast), and kept a very close watch on blood sugars (fairly intrusive with a responsible teen, but she allowed it fairly pleasantly). I told her about the possibility of taking progesterone or Captopril.

She is still taking very premium probiotics, L-Glutamine and herbs for her stomach. Manual lymph drainage is used for a different problme, lymphedema, but might help her too. Or maybe you too hatsnscarfs.

I am really wondering if we should start up Lyme/TBD treatment. Dr. J. would be the best option. It is good to hear that Biaxin and Plaquenil helped. My daughter did the best on that. Tetracycline ahs donew eird things to her: psychosis, extremely high ANA and anti-DNA (lupus), low thyroid, low blood sugars, and perhaps this...

Oops, went on a bit here. The dog had peed on the floor and rain is coming in the windows, so have to go mop up!

I'll find that other site...

p.s. editing to add that I'm not so sure the swelling/pulse on top of her skull w/headache isn't dangerous... am having that checked this week...probably related to the swelling, a new idea regarding a long-term daily headache and may bring solution

I can definately relate to the pictures in the article and the major shifts in weight up and/or down due to water retention...all in the ab area...and I am very light weight normally so it is VERY noticable!!

From my own personal experience and from almost being able to control it based on what I did or didn't do treatment-wise, I have my own theory what is causing this bloating...

For a long time I did believe it was all food allergy related...I never had food allergies before, but became a "universal reactor"..."allergic" to everything. But people only become allergic when their bodies are overly burdened...by toxins...

It's very easy for a Lyme disease patient to become toxic...all the abx, meds, the neurotoxins from the pathogens themselves, either replicating when alive as well as when they die..

The body does what it needs to do (at any cost) to protect itself...And one way the body "protects itself" is by retaining water..and what needs the most protection from these very potent neurotoxins...are our vital organs...which are mainly in the ab area...hence the bloating specifically in this area.

When the body processes the toxins, it can let go of the added protection (fluid retention)...but if you have an ongoing onslaught of die-off, or are constantly eating foods that your body is seeing as "toxic" now because it is on overload, or you are undergoing constant detox treatments...your body is forced to keep protecting itself....keep retaining water.

So I have found elminating as many stressors on the body as possible to be helpful...(fighting lyme to eventually reduce neurotoxins, reducing meds one can do without, doing allergy elimination treatments like BioSET, general detoxification etc) but sometimes to eliminate stressors, one must detox, so there is that catch 22...

So I have lived with this bloating for about a year, but now after quite a bit allergy elimination treatments and detox treatments...I am to the point I feel I cn cut back some on my detox,...and now I notice that I have more days than not where I am no longer retaining water...but it still comes back after any detox treatment I undergo...although now it only lasts for a day or two and then "falls off" as my detoxifcation systems have gotten stronger and more effecient to handle what has been mobilized...

Not sure if this helps, but just thought I would throw this in as something to consider along with everything else...