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Rachel--24

Omg...i Might Be On To Something

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Interesting discussion! My question is, doesn't every woman get some kind of tummy discomfort/digestive difficulty around her period? Seems to me , back in college, the whole dorm complained of that sort of thing.

Yes, but mine were so severe my gyn talked with me about having surgery for it. I am now only having "normal" issues.

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I didn't mean to imply that just because every woman had these issues, that yours were not severe! I was just wondering if ALL women would have improved time-of-the-month issues if they went off gluten. I guess I'm trying to force the shoe to fit everyone....

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Claire,

Have you visited the C.Diff message board?? I was posting there about a year ago when I first came back positive in my stool test. They dont let you ask alot of questions though...which kind of sucks. I was getting some input about my situation but they locked up my topic after it got past 2 or 3 pages. :blink:

Anyways you can read up on C.Diff over there and ask questions.....as long as you dont ask too many. :rolleyes:

http://www.cdiffsupport.com/phpBB/index.php

Thanks Rachel! Very helpful.

Have you gotten rid of your C. diff or just not worried about it? Just wondering, especially because of all the bacteria you said you tested for on the BioSET panel. What is that bacteria BioSET panel anyways? I don't think I've seen one at Dr. F's place. Does it have the specific names of the different kinds of pathogenic bacteria?

I'm sure I have it even though I was never tested for it. With DH having it, I'm sure we have spores all over the house since we aren't the neatest people :ph34r:, and my HCl was low a year ago. Also, my SIgA was low too, so I didn't have anything to fight it off.

Thanks, Claire

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I didn't mean to imply that just because every woman had these issues, that yours were not severe! I was just wondering if ALL women would have improved time-of-the-month issues if they went off gluten. I guess I'm trying to force the shoe to fit everyone....

I didn't take it that way at all. :) I just wanted to stress that my issues were related to gluten and went down to a more normal level when I eliminated gluten from my diet. Who knows, maybe going gluten-free would help everyone!

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Thanks Rachel! Very helpful.

Have you gotten rid of your C. diff or just not worried about it? Just wondering, especially because of all the bacteria you said you tested for on the BioSET panel. What is that bacteria BioSET panel anyways? I don't think I've seen one at Dr. F's place. Does it have the specific names of the different kinds of pathogenic bacteria?

I'm sure I have it even though I was never tested for it. With DH having it, I'm sure we have spores all over the house since we aren't the neatest people :ph34r:, and my HCl was low a year ago. Also, my SIgA was low too, so I didn't have anything to fight it off.

Thanks, Claire

I'll let Rachel answer later because she has a better memory than I do, but the panel I was tested on had little vials with the names of bacteria on them I think. There was a separate panel for Lyme bacteria. That was all during my initial testing...I haven't been treated for that yet though.

(Cinderella, singing outside the photo kiosk): "Someday, my prints will come...."

:lol: or if I was standing next you... :rolleyes::lol:

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Interesting discussion! My question is, doesn't every woman get some kind of tummy discomfort/digestive difficulty around her period? Seems to me , back in college, the whole dorm complained of that sort of thing.

Alison,

I never had any discomfort...digestive or anywhere else prior to getting sick. I never even knew when my period was coming...no warning signs....no obvious hormonol changes...nada.

Those were the good old days. <sigh>

Once I got sick....OMG....totally different story. Periods turned into the biggest heinosity ever. :(

Its not so bad now with diet changes...a tiny bit of tummy discomfort and some fatigue....I dont completely dread it anymore.

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Have you gotten rid of your C. diff or just not worried about it? Just wondering, especially because of all the bacteria you said you tested for on the BioSET panel. What is that bacteria BioSET panel anyways? I don't think I've seen one at Dr. F's place. Does it have the specific names of the different kinds of pathogenic bacteria?

I dont think you can get rid of C.Diff....since most people have some anyway. After taking Flagyl I was retested and came back negative.

Anyway....it wasnt causing any of my symptoms....nothing changed after treating it. I dont think it was at a point of being problematic. I did not have diarreah....which is the #1 symptom from C. Diff.

I was kind of skeptical that treating it would change anything after reading about C.Diff and realizing that my symtpoms didnt match. I just went ahead with the antibiotics and hoped to see a difference....but it didnt happen.

The clinic I go to has panels for just about everything you can think of. Some items are in the computer but alot are in panels (the little glass vials).

Yeah...they have all different bacteria. Its like with the Lyme panel they have all kinds of species and then all kinds of co-infectants. In actually there are over 300 species of Lyme....they didnt have that many though...maybe half??

With the mold/yeast panels they have all the different species. They pretty much have everything you can think of. All the environmental chemicals, petroleum chemicals.

Everything is very detailed....even the wheat/gluten panel had alot of vials.

They even had a panel that had air and water from various cities/counties in my area. Now they have little vials from the air at my moms house. One from the living room and one from the bedroom I sleep in. They did that awhile back cuz I was reacting to something in the house...it turned out to be the heater in the room where I sleep....so we closed the vent and now I'm ok. :)

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(Cinderella, singing outside the photo kiosk): "Someday, my prints will come...."

:lol::lol:

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Claire....forgot to mention....the C.Diff toxin showed up in a stool test about ayear ago.

In my initial BioSET testing....I'm not sure if it showed up or not. It shows a few bacteria on the report....one is Clostridum but I cant say for sure whether its Clostridium Difficile. Anways these are common and not harmful unless they are allowed to become so...just like yeast.

I'm going to BioSET tonight. Depending on who I see I'm going to bring this up....I havent done anything related to bacteria since my intitial testing. My bloodwork that the BioSET lady ordered came back with really high antibodies for yeast (which was the main thing) but I also had elevated antibodies toward some gut bacteria. So...I think I'll get her opinion on that next.

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Hi Rachel,

Hmmm, interesting about the treatment for C. diff not working. Well, I'm still having digestive problems after all the BioSET, taking herbs for bacterial dysbiosis, and all the other supplements I'm taking to try to help me :( . I see Dr. F tomorrow, so I'll get his take on things. I know there were other parasites I was not tested for. Since my symptoms feel so specific, I just have this feeling that it would be easy to pin point my problems. If Dr. F can't provide me with answers, I'll be off to a GI doc to at least rule out certain things.

I never used to have this pain when I go #2 before my surgery. I'm beginning to wonder if I have scar tissue that has formed between my uterus and colon, causing the problems. But I know that's not the only problem. I could have also easily gotten C. diff in the hospital.

Stupid hospitals :angry: !

Reading the C. diff board, some people didn't get relief from one round of Flagyl. Because the C. diff forms spores, it could easily come back. There doesn't seem to be any treatment for the spores. You just have to hope that your immune system is strong enough to fight it off? I read some wild stuff, like people getting fecal infusions from compatible family members, to treat their C. diff!

Claire

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Question: This has been burning me since about two months before being diagnosed with celiac disease. Do any of you experience any worse symptoms around the time that your period comes? Most of my symptoms seem to be directly tied to it....can anyone relate or explain??

By the way, when I got my ears pierced when I was 4 they became so infected that they had to be removed. My mom, on a whim replaced them with her own 14K's and it all cleared up. To this day I cannot wear any jewellery that is not at least 10K or better. The rash I get is unbearable.

Dear LL04,

I had major PMS for years! I used to get D every time before I started my period, plus a migraine. It was awful! Of course, I found out I had ovarian cysts when I was 17. Since I had 5 in less than 10 months, and birth control pills did no good, they tried the Depo - Provera. It has done the job so far. However, because these problems run in the family (my mother had a hysterectomy at 31, her mother at 36, and my other grandmother at 26) I do not know how long I will be able to hold off on getting everything removed. Before the Depo, I also had such heavy periods that I was anemic. The cramps were so bad that there was extreme pain going from my uterus down into my rectum to the point I could not even stand straight for the first three days. It was miserable. Also, two weeks prior to my starting, I would get really bad hot flashes, night sweats, have trouble sleeping, and have terrible mood swings and cravings. The shot was doing pretty well until about two years ago. All of the sudden, I began having break through bleeding off and on all of the time. I have a period everyday. I think Candida may be to blame. The odds are it is not the shot, since it started five years after me being on it. Usually, side effects like that manifest sooner. I hope this helped answer your question.

Sincerely,

NoGluGirl

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Hmmm, interesting about the treatment for C. diff not working.

As far as I know the treatment worked because I tested negative for C. Diff 30 days after taking Flagyl for it.

Reading the C. diff board, some people didn't get relief from one round of Flagyl. Because the C. diff forms spores, it could easily come back. There doesn't seem to be any treatment for the spores. You just have to hope that your immune system is strong enough to fight it off? I read some wild stuff, like people getting fecal infusions from compatible family members, to treat their C. diff!

Claire,

My take on this is that alot of them dont actually have C. Diff.

From what I remember most of the people having a rough time with it werent testing positive for it. A few were....but most were not. I think that in many cases the Flagyl probably does take care of the infection (which is why they no longer test positive) but the symptoms remain.

The symptoms can be caused by something else. Susan (DingoGirl) had her Celiac triggered by her bout with C. Diff.

When someone gets C. Diff it is a huge blow to the immune system. The infection can be life-threatening and many times people are hospitilized because they become so weak from the diarreah. I'm sure both Susan and Evie can tell you how bad it was for them.

So....because of the fact that it can really bring down the immune system and the fact that treatment is Flagyl....a very strong antibiotic.....I think it wouldnt be far-fetched to think that these people may not be recovering because they've developed other issues. It could be Celiac, Candida, Crohns...or something else.....but I dont think they are all having reoccurring bouts of C.Diff.....seeing that most of them cannot get a positive test for the toxins.

For those who do keep testing positive ...I agree ....they are not able to fight it off because something is weakening their immune system enough that they cant get it under control. In that case its probably a similar situation to someone not being able to rid themselves of Candida....they havent addressed the underlying cause and so it keeps coming back.

These people could have other infections or something else thats allowing the C. Diff to keep a strong foothold....its opportunistic...just like candida and it will take advantage of a weakened immune system and lack of beneficial bacteria.

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I'm glad you posted Rachel.

I was beginning to wonder if you didn't do well with your bioset yesterday. :(

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I was beginning to wonder if you didn't do well with your bioset yesterday. :(

Andrea,

WOAH.....I went to my BioSET appt. half drunk! :blink:

Seriously.....I felt like I had been drinking. :o

I dont remember much about my testing but I *do* remember that we did pesticides and I reacted to maybe half of them.

There were no vials for this panel....the whole panel was on the computer so I just sat there like this the whole time. :mellow:

I was totally zoned out.....I dont even think I spoke AT ALL. :huh:

By the time I went into the treatment room I started feeling kind of "stupid"....like I just wanted to start laughing at everything. :ph34r:

Anna was suppossed to do my treatment but she was behind...I waited like a half hour and then they just had the other girl take me.

I'm pretty sure too much toxins got released from the yeast...making me feel pretty buzzed. I actually had forgotten that I used to feel like that every single day for 2 years....up until I changed my diet when I went on the candida diet.

After my treatment I went and saw Anna. By that time I really felt buzzed and I just had the hugest grin on my face....I felt like I couldnt talk. :ph34r: I told her "I cant even talk right now!!" :lol:

When I was really sick and still eating normal foods I felt like this all the time....not so much where I felt happy though....at that time I felt really BAD. I definately felt like I couldnt talk though...I remember avoiding people alot and just finding it so hard to get words out, focus on a conversation or get any thoughts together. I would often slur my words.

It had to have been the yeast toxins....along with gluten and all those nasty chemicals.

You're not only dealing with yeast overgrowth but also the fact that Candida albicans puts out 79 toxic by-products, all of which weaken your immune system. One of the major toxins produced from Candida albicans is acetaldehyde, which is transformed by the liver to ethanol (alcohol), creating the feeling of intoxication and brain fog. There have been cases where Candida patients have been pulled over and tested positive with elevated blood alcohol levels above normal.

If yeast overgrowth is not arrested it will change form into a pathogenic (disease producing) fungus with roots causing a myriad of symptoms. This fungus burrows its roots into the intestinal lining, creates leaky gut, allowing the yeast/fungus to go into the bloodstream. This systemic yeast infection is called Candidiasis.

So yeah...I think maybe I was a bit "tipsy". :unsure:

At least I was happy...I was dancing and singing in my car all the way to Whole Foods after my appt. :P

"Candida is responsible for flooding the system with an accumulation of toxic acetaldehydes. Acetaldehydes are known to poison tissues -- accumulating in the brain, spinal cord, joints, muscles and tissues."
This article talks about Molybdenum being helpful as far as helping the body get rid of the actealdehydes...

"Molybdenum is chemically responsible for breaking down acetaldehyde into acetic acid. Acetaldehyde cannot be excreted from the body; it accumulates. Acetic acid can be, though, and the body naturally removes it or changes it into acetyl coenzyme A, a major player in the body's energy system.... Acetaldhyde accumulations in tissue are responsible for weakness in muscles, irritation, and PAIN."

And now for the good part (g), directly quoted from Dr. Walter Schmitt:

"Chemical aldehydes are best known as fragrances." [shall I repeat that?] "Chemical aldehydess are best known as fragrances.... Ethanol, or drinking alcohol, is also precessed to acetaldehyde. ...the body has an enzyme which breaks down the aldehydes to less toxic substances. This enzyme is aldehyde oxidase, or sometimes, aldehyde dehydrogenase. Aldehydes encountered dietarily or environmentally or produced in the body must be handled by aldehyde oxidase metabolic pathways.

Acetaldehyde is a paraticularly toxic substance which, in addition to being produced by threonine and ethanol, is a product of the metabolism (i.e. fermentation) of carbohydrate in yeast -- hence the Candida connection. Acetaldehyde is thought to be the major source of tissue damage in alcoholics rather than ethanol itself.The conversion of acetaldehyde into acetic acid" for this reaction to occur, threonine to acetaldehyde to acetic acid to acetyl coenzyme A, NAD (niacine amide) is required, and aldehyde oxidase is dependent of riboflavin, iron, and molybdenum. These forgoing nutrients could be helpful to Candida albicans patients, and others who are sensitive to various fragrances and airborne odors. Those patients with aldehyde sensitivity are incredibly sensitive to any type of fragrance.

By coincidence, (or is it?) there's a little squibb in the newsletter from the Environmental Health Association of Dallas on fragrance. "Perfume today is not made from flowers but from toxic chemicals..... More than 4,000 chemicals are used in fragrances. Of these, 95 percent are made from petroleum. Some toxic chemicals found in fragrances: toluene, ethanol, acetone, formaldehyde, limonene, benzene derivatives, methylene chloride, and many others known to cause cancer, birth defects, infertility, nervous system damage, or other injuries.... Exposure to scented products can cause exhaustion, weakness, 'hay fever', dizziness, difficulty concentrating, headaches, rashes, swollen lymph glands, muscle aches and spasms, heart palpitations, nausea, stomach cramps, vomiting, asthma attacks, neuromotor dysfunction, seizures, and loss of consciousness." This was reprinted from No Perfume Means Healthier Air brochure, Breath of Fresh Air Battleaxe, Oakland, California.

So...I think I'm extremely sensitive to those chemicals in perfume because of the candida toxins....my liver cannot handle all these "aldehydes". :(

I think I'll ask Anna or my Dr. about the Molybdenum...

Does anyone know what that is?? Is it a supplement?? Heck....I'll go buy some tomorrow. :lol:

There are a few people I know who wear stuff that affects me a mile away and I actually do not smell a "fragrance" at all....I smell some type of VERY strong chemical that I can only describe as being strongly related to alcohol.

There is one girl at work that started wearing something new about a month ago and it has one of these chemicals....it smells like alcohol and it affects me in the worst way. :(

Luckily I usually only have to work with her for an hour at the most but I can smell it all over the store...I dont even have to be anywhere near her and I dont even have to *see* her to know when shes there.

It sucks and pretty much everyone knows the situation with her perfume...except her. I have a friend at work who is NOT afraid to tell anyone that their perfume is making me sick. :lol:

Shes been gone for surgery but will be back in a couple weeks. :D

Anyways the girl with the "alcohol" fragrance is really sweet and now she probably thinks I dont like her anymore because suddenly I'm avoiding her like the plague. :(

I think all of this stuff is caused by the candida. :angry:

I brought my Nystatin and my probiotics with me to BioSET so Anna could test them. I wanted to make sure I'm not sensitive to them and that my reactions to the Nystatin are only from die-off.

I tested fine for both. I didnt tell her what the pills were...I think cuz I was off in my own world. :rolleyes:

She did the Nystatin first and said I could take 2 pills per day w/out trouble....I'm not sensitive to it. I was really happy aboput that...I told her "Good....cuz thats my Nystatin!". :D

I told her that I sometimes feel funny things right after I take it...almost immediately. I asked if die-off could happen that fast?? The same thing used to happen to me when I took Nystatin 2 years ago. It never happened when I felt really good though....I think its a good indication that the yeast levels are very high.

She said it shouldnt happen so fast but shes aware that I take my supplements out of the capsule. She said its probably because its going straight to my gut and its pretty potent so its affecting the yeast right away. I told her I started taking 3 pills a day and she said I'm killing off too much yeast too fast. She said I can stay at this dose but to take the 3rd dose inside the capsule so that I'm not getting as strong a reaction.

I do notice that if I take it inside the capsule I dont feel anything funny going on right when I take it.

I told her I feel bad eating the veggies....that I actually feel BETTER eating the ice cream. I asked if this had anything to do with the candida??? Are they tricking me?? :unsure:

She said YES!! She said its like when a smoker stops smoking.....the cravings are strong and powerful and you feel BETTER when you give in to the cravings. Its the same with yeast...they want to SURVIVE....they NEED sugar...and they will start dieing-off without it.....making me feel bad. If I feed them they will be very happy....and I will feel better....but only temporarily.

My cravings havent been too bad...but yeah...I feel like I want something SWEET....I want my ICE CREAM! :(

Its only been a little over a week since I started the Nystatin and only a few days since I gave up the ice cream...but I already feel like I'm less reactive to stuff like dust and things that irritate my sinuses. :)

The Nystatin wasnt gonna work on its own...the diet has to be in full affect. I guess I was hoping for some miracle where I could carry on with my ice cream and still kill the yeast. :rolleyes:

Anna also checked me for garlic since I'm eating lots of it now....she said it should be fine since we treated sulfur and the sulfur pathway. The computer showed no problems with garlic. :)

I get the same funny feelings eating garlic that I do when I take the Nystatin...I guess this means I'M KILLING YEAST!! :D:D

The reactions seem to be lessening now that I'm not eating ice cream.

My pesticide panel was boring....it seemed like there must have been about 100 different pesticides and I didnt recognize *any* of them. :huh:

They affected alot of my body systems but I was too zoned out to pay attention or retain the info. :rolleyes:

They didnt really weaken me though...my energy was still strong even with all the pesticides in the glass. My brain tested strong....it was nothing like what happened with the molds, yeasts, wheat and thyroid panels.

I dont have an appt. tomorrow....its scheduled for Friday this week....I have no idea what comes next. I hope its something a little more exciting than pesticides though. :lol:

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Rachel,

Now you've got my motherly henliness going. :(

Is there any way you can cut back a bit so you're not so spaced out. I'd really like to have a safe and sound friend.....not one in an accident.

How long were you on the candida diet last time? Was it a combo of the foods you were eating and the nystatin that was so bad?

Is there an estimate as to when the die off won't be as bad since the population should be going down?

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Wow Rachel, thanks for all the info you posted...it explains a lot for me! I was wondering why I used to feel sort of loopy when I did the candida diet/antifungals, lol.

Anyway, molybdenum is in some of my vitamins. I suspect you could probably find it by itself though. Molybdenum just came up on something for me but I can't remember what...it must be BioSET, but I can't think why it would have...I can't think what we treated last time but it was just in the last week or so that moly came up. Hum, guess it must have been in a good way or I would remember. :lol:

I'm almost done with my amalgam removal. Yesterday was supposed to be the last removal, but for some reason he didn't want to do the little itsy bitsy filling I have in my front tooth. Can't figure that out cuz I was already numb, but I guess the other two took too long or he was worried about my jaw. Anyway, he'll do that one in two weeks when I go back to get the permanent crowns put on...that worries me cuz he doesn't always numb me for the permanent crowns and he didn't numb me when he did THE OTHER LITTLE ITSY BITSY FILLING IN THE OTHER FRONT TOOTH!!!!! :D Can you say "out of the chair". :lol: This time he let me take lots of breaks for my jaw, so I'm hopeful I won't be in agony for the next two weeks.

Anyway, I'm anxious to start the detoxing, so I just wanted this to be done, but I can wait two more weeks, I guess. :lol:

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Donna, maybe you can ask him to numb you. He might have thought you'd rather deal with a little pain than deal with the numbness. My dentist is a "gentle" dentist. The hygenist was cleaning my teeth and the metal thing she uses tasted really bad. I asked her why and she said she was putting some stuff on it to numb my mouth while she was doing it so I'd be more comfortable. I had never heard of that nor needed it! I asked her to stop, I can't stand the taste or the numbness that came with it! Of course, I like to be numb for my fillings.

Rachel, if you're feeling drunk, maybe Andrea's right. You and I like to rush things ... both of us need to read about the tortoise and the hare ... slow and steady wins the race! DO NOT use that as an excuse to eat ice cream though!!! I agree with Anna, from my experience with candida, I craved sweets and seemed to feel better after eating them.

I really must not have candida because my doc has me taking 2 Nystatin three times per day ... so six per day and I'm having no reaction at all. I'm wiped out, but I was wiped out before. I am also constantly thirsty, but I think that's probably from all the other medications I'm on. It's good though because water helps wash it all out!

All this timing is difficult ... probiotics 3 times per day at least an hour away from antibiotics, which are 2 times per day. Antibiotics with high fat food (because of one of them, it's really an antimalarial). Supplements away from antibiotics. Trying to fit in exercise and a sauna at least an hour after eating is becoming difficult! Especially since I should eat after I exercise. And the worst part is that the babesia causes anorexia, which totally explains why I have to make myself eat.

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Carla! I've been wondering how you were doing on the meds! Wow, 6 Nystatin and no reaction...wow, lol.

Thanks, yes, I think his assistant will also mention numbing me for the drilling, lol. It's a really small filling, but from my experience with the other one which is almost exactly the same size...I want to be numbed for this. :lol:

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Carla! I've been wondering how you were doing on the meds! Wow, 6 Nystatin and no reaction...wow, lol.

I don't know that I would really notice a reaction anyway ... the Lyme gets to my brain so badly that I wouldn't notice being spacier .... and I don't know how much worse I could feel than I already do, though I'm sure it's possible!

So far, not much change on the antibiotics. I think I had a smallish herx after a few days of them, but it just made me more tired and weaker. I've just been laying around ever since I started, except I still go to the gym Mon., Tues., Thurs. & Fri. I notice I'm lifting less weight and able to do fewer reps, so I have gotten weaker. We'll see how it goes in three more weeks ... the estimated time for the bigger herx. Supposedly, after each herx you're supposed to feel a little better. We'll see. There is a thread on Lymenet about the stuff I'm on, I guess it makes you feel pretty wicked, yet it works.

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Laura, I'm sorry, that's awful! I hear bad things about Flagyl ... be sure you don't drink ANY alcohol, even in herbs, etc.

At least you're finally getting some answers.

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Donna,

YOUCH! I wouldn't want to have anything to do with a filling being redone without numbing! Yah, you're almost done with it. That's so exciting.

I talked to my doctor about that testing I mentioned. Already forgot the name of it but it's thermal something. It detects cancer 5-7 years early I think he said.

Carla,

Thanks for touching bases with us. Your schedule sounds really complicated. :blink: I don't want to think that hard. :lol: I'll be curious as to how you are in a few weeks as well.

Laura,

C-Diff! Don't know if you've been reading any of the Flaygl info lately on here.

Other things too? How long are you on Flaygl?

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I have a question for you experts! Morgan is suffering from fatigue even though she gets on average 9 hours of sleep each night. She slept for 12 hours last night and had to go back to sleep because her eyes were sore. After she slept some more, she's still tired and her eyes aren't as sore, but they're still bothering her.

Any ideas? I had Lyme already when I was pregnant with her ... she eats gluten-free.

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