The swelling goes up and down w/in each day (worse in the evening) and when the swelling is better, these marks go away.

She also has apparent swelling on top of her head, which bulges at times, where you can feel a pulse on the very top of her head (and causes headache).

She can look quite overweight with this swelling, although at other times she is average size. She doesn't eat much.

We thought all this might improve with fluconazole, since an endoscopy revealed extensive GI yeast, and further testing showed leaky gut. She has also tried a special diet for yeast, and also gluten-free.

Today is her last day of fluconazole. She has been taking 100mg/day for 30 days but wishes she could take this twice a day. Her impression is that it wears off during the day-?

My daughter has been suffering from this for more than a year and is in extreme despair tonight.

its not a real common illness in older children and it is more serious as you get older

2)the important thing with yeast is to have no sugar and no gluten in the diet , this means absolutely no wheat or pasta , poor kid no pizza.
it also helps to have no canned or preprepared foods because most have sugar in them or wheat or gluten fillers. no fruit juice as its loaded with sugars, obviously no sodas( i drink flavored seltzer water which has no sweeteners in it)also you are supposed to avoid artificial sweeteners and cheeses etc etc .
its a really limited diet that you have to really stick to diligently for it to work , no cheating. you must follow the diet while on the fluconazole or one will cancel out the other

when i took fluconazole daily I took two a day for a short period of time and it did help better
also the brand diflucan seems to work so much better than the generics . more expensive but its worth it . diflucan can be bought in 200 mg tablets which might work better
other things that can help get rid of yeast are oregano oil in capsules, fiber stuff with the main ingedient cellulose( scrubs the intestine and somehow destroys the yeast cellular wall( make certain its sugar free)( citrocel is a common brand)
pau D arco is an herb that is also helpful. lots and lots of fresh garlic and
20 billion units of acidolphyllus 3 or 4 times a day (yoghurt in itself doesnt have enough probiotics in it)

This is not purpura. These are flat purple streaks, basically stretch marks, but they disappear when she is not swollen (usually in the am) then reappear when she is (usually the second half of the day).

Parts of her look like water balloons at times. Anyone else have this?

p.s. Tincup, we are trying the dandelion tea for water retention...purple marks are new since Iast posted about the water retention

How are your daughter's headaches? I remember in the past she had them really bad. Unfortunately, my son still has constant headache pain.

Lymied...did the doc who showed slides mention if they have found Bartonella in the lesions? I'm assuming someone must have cultured it or found it by PCR...would really like more info on this, because we would consider biopsy if so. We're trying to discern which infections to treat at this point.

Hope you find some answers Lyddie..it's so difficult to be 15 and go through all of this. You are both in my thoughts,

Usually when taking a shower? Not sure if it's the taking the shower part or there's more of a chance for me to notice it then.

I consider it red but it's like a red/purple I guess, if I really describe it.

Sometimes it is not there while taking a shower. I just noticed, maybe last week, that it would disappear at times. I just thought it was permament.

I don't think I am retaining water though.

These marks are directly related to the swelling from fluid in her tissues. Last night, we tried a mild diuretic (w/MD's permission,as an experiment), the kind you get at a drugstore OTC. This am, the swelling is a little better (although this is often true in the am) and the marks are faded, though still there.

This daughter has type 1 diabetes and every 2 or 3 days I stick a two inch needle right in the middle of the purple streaks on her bum, for her pump cannula (subcutaneous) to deliver insulin.

This swelling has weird effects on blood sugars. Huge amounts of insulin are required. She has been in the high 200's or even higher late pm with insulin levels triple normal. Our theories included yeast herxes (she's been on fluconazole) or food sensitivities (she's been gluten-free and doing elimination diet etc.)- at least for the swelling and highs.

After the diuretic, at midnight, when her blood sugar had been high for weeks, she was 41! This is very low. I can only speculate that the fluid in the tissues on her bum might be diluting insulin or something. An MD will never think outside the box like this, but it is an extremely important clue that someone needs to ponder.

This teen has been treated for lyme, starting in early 2002. Her extensive medical history includes vomiting as a new infant, frequent penumonias w/asthma (11/year), type 1 diabetes at age 4, sinus surgery, ankle and knee surgery (collapsing knee, synovitis in ankle, for no apprent reasons), eye problems, psychosis on tetracycline (resolved immediately when taken off, but lasted 3 months), complex partial seizures during treatment, GI problems w/difficulty eating, and a constant, horrible headache since Jan. 6, 2003.

She also had very high ANA (1:1280) and positive anti-DNA at one point, so they thought she had lupus. She had joint pains, muscle pains pretty much everywhere for awhile, and had to stop soccer and clarinet for a year. She also has Raynaud's.

She missed a lot of school in Middle School, but in high school it has been pretty good. She is in and out if the head pain is bad, and teachers help her keep up.

Dr. D is not treating her anymore. He sort of discharged her, but I think he is just afraid of treating her. The meds have affected her GI system adversely, and an endoscopy revealed extensive yeast in her esophagus and GI tract. She had been on abx and Plaquenil.

She has seen Dr. J three times, but is not seeing any Lyme MD right now (as of last month). Her ANA resolved to 1:160 and some of her symptoms were improved, so the consensus was to focus on getting her body rebalanced. We found an excellent new PCP and are awaiting the return (this month) of a doctor at the alternative Marino Center in Cambridge for help with the swelling issues. She sees him on 6/23.

Blackmon, I remember you from your responses about headache. My daughter's headaches must be better because she is able to function 5 out of 7 days/week on average. Those other two days, when she is in bad pain, seem weather-related, but I recently posted the school nurse's observation (supposedly impossible) that there is a swelling/bulge on top of her head where it hurts, and a strong. palpable pulse on that spot, above the bone! She takes Butalbital when it is unbearable.

This daughter is an amazing person. Her new PCP remarked that she has had more extensive medical problems than anyone he sees, w/the exception of one kid w/congenital problems, but that she does not present as "sick" at all.

She is actually quite radiant, humorous, and does tons of drama and music whenever she can. She is proficient at the clarinet and classical guitar, and was in 5 plays this year! She cleaned up in academic awards too, but is sort of irreverent about it all. I don't know how she does it.

I am outraged that we are faced with the prospect of paying so much money out-of-pocket, when we also pay insurance $12,000 in premiums. But if we had a doctor that was worth it, we would try again. This child refuses to see Dr. J, adamantly, does not like him at all. (I know this is a shocker, but there it is)

Tick-borne illness of some kind may be responsible for her latest problems. Lst spring and summer, I blamed it all on SSRI's s it has taken while to look elsewhere for reasons.

Thanks for the bartonella suggestion.

Clearly there is an effect on some of her glandular activity. Her endocrinologist just sits there and says "it's the Lyme, it's the Lyme..." which, frankly, seems to absolve him of responsibility to her.

Noone wants to deal with her problems. They are too complex, and each specialist (she has seen rheum, neuro, pain mgmt., infectious disease, endo etc.) palms her off on the other. Several PCP's we interviewed refused her case.

I am stuck with a brave, despairing daughter, who has spent more than a year of her life all puffed up like a water balloon-after 10 years of already suffering.

The MD's thought she had an eating disorder, and accused me of being in denial. They threatened me w/accusations of neglect! I knew that she did not have an eating disorder, and held my gorund, but took her to an eating disorder clinic AND a psychologist to prove it. Sure enough, all the pscyh. providers agreed with me.

This took a couple of months, and delayed the endoscopy, which explained the trouble she was having w/eating.

However, no explanation has yet worked for the swelling. I now have the school nurses document their observations of this swelling/ the marks, the head pulse/bulge etc. so all of this isn't interpreted as psychological.

Her current PCP understands the enormity of her experience, and how amazingly stoic she is (the nurses also wrote this up), but in the past, some MD's have not. If she looks so good (red rash on cheeks looks like rosy cheeks), how could she have al these problems?My daughter is deeply suspicious of doctors and has been badly hurt by a few.

One last thing: No matter how good the LLMD, we have yet to find one who understands type 1 diabetes. The endo doesn't really understand Lyme. Everything everyone does in terms of meds, affects blood sugars. There are times when it is just overwhelming.
Thanks all.

why is it that your daughter doesnt like dr J
does he not listen to her ?i suppose you either like someone or dont , but maybe the issue there can be resolved? maybe not
personally i hate diuretics except those that are herbally based, usually they are just too intense on the body disturbing electrolyte balance and mineral balances

often the herbally based ones do all well a job but are gentler and dont unbalance the body.
dandelion may not be enough though , there are other herbal remedies that are diuretic , hmmm how about skullcap, its a diuretic and anti-inflammatory.
the pulsing in the top of the head is reminiscent to me of what happens with me with a severe migraine, although i know this isnt your daughters issue,
I wonder if feverfew would help because of its ability to increase circulation in the blood vessels , it dilates the blood vessels so blood flows more smoothly so the pulsing pounding effect doesnt happen

( Ive only been on the boards a few months so i dont know your daughters treatment history)
chromium is supposed to help balance blood sugars in diabetics, has your daughter tried it? supposedly those who take chromium will often need less insulin down the road.
I know someone who used to take osha root , he seemed to feel it helped his diabeties , i dont know why .
with all these issues your daughter has and with all the meds she is on , does she do a regular liver cleanse to help remove toxins from the body??
an idea also to combat water retention that works believe it or not is to increase fluid intake to 3 or more quarts a day . seems counter effective but it works

Does she have white spots on her fingernails? Try a good organically-complexed zinc supplement (I use Tri-Zinc) and take with the P-5-P (pyridoxal-5-phosphate) form of B6.

Lyme is known to elevate kryptopyrroles in some people, which makes it hard for them to retain zinc. I am one of these people. Cut out all red and yellow/green food coloring and vanilla flavoring as these compounds are brutal on the body's zinc supplies.

She's tried meds that deal with vascular constirction because of the Raynaud's and headache, but got much worse. I will ask him about feverfew, which might have a different action.

We only wanted to try the OTC diuretic once-they scare me! The low blood sugar that resulted is a case in point, Any time she does a med that's new, I get up every hour at night until I know she's safe! Last night it took until 3 am...However, you're right, the dandelion tea doesn't seem strong enough. She has tired to drink more, we had heard that paradoxical suggestion. And limits salt. But some gland or hormone in her body is obvioulsy way out of whack.

Dr. J. said a few things that showed he did not understand the diabetes. Most people are familiar with type 2, and a lot of the suggestions we get, which are so kind and well-intentioned, apply to type 2.

During her appointment, he took a lot of phone calls, and talked to her a lot about one particular patient that he was dealing
with on the phone. I think it made her feel like he didn't care about her, not sure, it was 4 years ago and she was pretty sick.

The complexities you are dealing with are immense.

I wanted to say that my suggestion would have been supportive, adjunctive, compatable alternative therapies..
focusing on the eliminative organs, or course safely with her diabetes condition.
(to attempt to relieve the swelling)
And I see you have an upcoming appointment..

Chronic illness I believe requires constant 'maintainance' of these organs.

Perhaps the alternative Doc can focus on this area..which may alleviate some of these issues (any swelling that may be involved with lymphatic/kidney, ect)..
and clearing the intestines (FIRST) for release of toxins.
There are very effective and safe Traditional Chinese herbal regimens and other (you can opt for teas, especially for diuretic tx..and avoir tinctures if she cannot have alchohol..and some of them you can just take in powder form on the toungue. I know 2 type 1 diabetics who have benefited from this approach ans have not had huge sugar level problems.. they consult with Julia at www.sensiblehealth.com and use her herbals, it is an interesting site for an overview od the traditional approach to clearing these pathways )

Maybe this overall eliminative approach (in general, in a way that works for your case) would provide enough relief to see clearer what else remains?

About Doc J..
I can see where your daughter may have felt that way..he treats literally thousands, and often when we are there he has to take a call, but usually only if it's urgent.
He also talks about various cases...but I never see a lack of focus at the same time..
however, if there is a bad impression from that in her mind, it won't be productive to see him I suppose.

I do think, tho -- that once /if you are realizing you need Lyme (and Bartonella) treatment..he's the man for the job.
He doesn't by any means know ecerything about everything, but you can't beat him in Lyme, and he really cares about these kids.

Tho, again, clearly...it will take help from an open diabetes Doc, plus maybe the alternative Doc if that works out, because this case is so complicated.

I have read often bart can cause the stretch marks, and also can infect the lymphatic system.

We have not had the marks, but my lymphatic system was clearly effected by Bart, with intermittant swelling (but not as bad as this sounds..I would guess there are other factors there, or contributing)
My son did not have swelling, but the combo of Bart and Lyme infiltrated the CNS and caused psychosis and near vegetable state.

These kids are angels with the strenth of Hercules.

Mo

Bartonella. Get her checked ASAP for Bartonella henslea and Bartonella quintana.

Quest lab.. which should be ok with your insurance company... does a decent test for both these infections.

Keep up with the dandelion tea. Make take a few days. OK?

Good luck!

Gotta love you both...

It's just going to take time...and it's hard when she is so despairing.
I think we're starting on the right path w/this new doctor. If her body can get rebalanced some (sounds like a car!) then I think another visit to Dr. J is a good idea. In the meantime,I will ask the PCP about a Bartonella test, he's open. The alternative guy we're seeing this month does Chinese and other herbal treatments and can refer us.

Intuitively, it "feels" as if all her drainage is blocked, so cleansing sounds great. I will ask about it at the appt.

(editing in case you're not familliar with MLD-- it's a style of massage often used on people who have had mastectomies or other surgeries that involve removal of lymph nodes. And for other situations where the lymph system is not working. Gentle manipulation of the tissue gets the lymphatic fluid moving properly. Won't cure anything, but can vastly improve her comfort. I use it on my dad a lot. It really cuts down on his discomfort. Makes him pee like a racehorse afterwards, though.)

You'd need someone very experienced and used to working with ill patients, because MLD can cause quite a toxin dump into the system if not done carefully. And it's definitely something I'd discuss with the doctor.

But I've seen it work beautifully. For 2 reasons, I think; because of the lymphatic drainage itself; and because of how mentally and physically excellent a good massage can feel.

In some cases insurance will pay if it is prescribed by the doc.