posted
Nicole called me crying hysterical last night from Chicago (I'm in Ottawa) saying she had been throwing continuously up for 2 days, pain meds not touching her horrible pain, can't do it any more, no point in living, nothing is going to help, etc, etc.
Background: We saw Dr. C 1st time last weds. Diagnosed probable Lyme, co-infections and candida.
Allergies and asthma since birth, runs in the family
She's had long time food allergies (wheat, eggs, molds, etc). and airborn allergies.
Big time allergic to molds.
Doxycycline 400mg / day
Nystatin 500000 u x 4 / day
Probiotics 8 / day
B 12 shot 2 x / week
MS Cotin (SP?) pain killer
diet: no nightshade family plants (tomatoe, pepper, etc)
no fruits, sugars, sweeteners, etc.
no / little carbs
no gluten
only sleeps 5 - 10 hours per week
all the typical sever neurologic and psychiatric symptoms
severe unrelenting pain entire body but worst in head / neck / back
She initially had more energy from B-12 and relief from MS Cotin but now pain is unrelenting
Dr C said start the meds slow and work up, I think she went too fast, up to full dose listed above in couple days.
I read all this stuff, says: try this, try that and I don't know how to sort it all out. I'm new to this. Do you guys see a pattern here?
I'm wondering if the mold / allergies are significant. This was only mentioned to Dr. C in passing, that she was allergic to mold so couldn't take penicillan
Or does she have a toxic overload that is being made worse and she can't clear. I think she needs to detox but I read detox too fast can make worse and don't know what to do.
She says the only way she can live is if someone puts her in a coma. This is not a weak kid, she is the stongest person I know.
We have a phone conference with Dr. C at 3:15 today.
Does anyone see a pattern?
Dara
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi Mom,
I'm sorry Nicole is feeling so horrible! The only help that I can offer is that for all of January and half of February, I went through something simular.
I actually said that I wished that I could be put in an induced coma because relief was not found ANYWHERE.
I have now cleared enough to be up and alert with only lingering constant headache and some facial pins and needles....don't need the coma now.
Point is, the abx are probably doing some killing and she is having an increase in symptoms....or maybe the abx are too high of a dose for her and she neds to work up to a theraputic dose?
Discuss all of this at 3:15 today. Best to you and to Nicole
Posts: 3975 | From usa | Registered: Aug 2007
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Vermont_Lymie
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Member # 9780
posted
Nicole's mom,
Sorry to hear that she is not feeling well.
Is she taking the doxy with lots of food? I could not tolerate doxy without nausea unless I took it with a full meal.
Hopefully, something that simple explains the throwing-up, and can take care of it.
Sounds like it could be a herx, since she is just started treatment, and has been sick for some time. Herxes can feel like that.
You are right, in my experience and opinion, it is better to start SLOWLY when carrying such a high bacterial load.
Treatment IS a bumpy road, but starting slowly can work and ease the initial herxes a bit.
My best wishes, I hope she feels better soon.
Posts: 2557 | From home | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
If she ramped up the dosage too fast, she could be having a major herx.
I am so sorry to hear this...We all want to be as aggressive with this disease
As it is with us, but slow and steady will win the race.
Die off of bacteria flood the system with toxins.
Cause some symptoms to be much worse, new symptoms emerge, etc.
Doxy can be really hard on some people. I also had to take mine with food.
Make sure not to lay down for at least 2 hours after taking it.
Let us know what Dr. C says and thinks.
Sending you both prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Dr. C will likely advise you to slow down!
Sounds like she is experiencing a herxheimer reaction to the meds. Spirochetes are being killed!! Please let her know that it's pretty typical to feel like death warmed over at the beginning of treatment. In fact, that's diagnostic in and of itself in helping to actually confirm the doctor's diagnosis. If she didn't have lyme, she'd feel no different when taking meds.
When on doxycycline, it's important to eat a good meal before taking a pill. Here's how I did it: Eat half of a good breakfast. Stop. Take your pill. Then finish. Resist the urge to lie down for at least an hour after taking doxy as you can ulcerate your esophagus. It's an amazing drug for killing lyme bacteria but can work a number on your stomach.
Avoid milk and milk products.
Please have her come here and read some encouraging stories. Make sure she understands that the worsening of symptoms is temporary -- it WILL let up.
Good luck -- I am sure she is lucky to have you for support!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Sounds like herxing to me from the meds..I see Dr. C too and he will say to back off and not suffer through herxs...
When I was on doxy it was very hard and lots of herxs!!! I also would suggest something to get some real sleep..Our body has to have deep sleep to heal.
I take Trazadon, it is an older anti-depressant and in now used not for depression, but to help people fall asleep and stay asleep. It has been a huge life saver for me, as I was a complete insomniac!
I applaude you for helping your daughter and getting in the fight with her..That is huge! My Mom is the same way, and it has been a huge support for me during this nightmare that has been thrown into my lap!
Good luck with your phone appt. today!
Wishing you healing, Laura
Posts: 232 | From MN | Registered: Jul 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
You MIGHT ask doc C for Doryx(sp?) instead of doxy,,,sometimes tolerated so much better.
I couldnt take doxy even in the winter,,,sunburn issues,,,hope your daughter isnt fair skinned,
Blue eyed blonds have ALOT worse time with it!!
Good luck and have a good phone convo!!
SO NICE to see supportive parents!!!thanks for being a terrific MOM!!says--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I could never have handled 400mgs a day even after 1 week. I had to stay at 100mgs twice a day for a month or so, then worked up, even then,
I threw up when I took 200mgs of Doxy at once, so maybe you need to space it out?
I then went to Minocycline at 100mgs twice a day and did not throw up from it.
I was ok with Doxy at 100mgs twice a day, I had lots of herxing but no vomiting. But when I increased it, I just was so sick and vomiting, so see if this is what is happening to you,
maybe the LLMD will space it out, or has ways to handle this situation, and maybe she is just vomiting because it is too strong,
hope you can figure it out.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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no / little carbs ?
In theory, that sounds good to avoid candida. However, some people need more.
Our brain needs carbs. Our bodies need carbs for energy.
Non-gluten grains for slow carbs; legumes . . .
another reason I am concerned with trying for no carbs is that, if porphyria is a player - even secondarily - a steady supply of slow carbs can prevent toxic buildup of excess porphyrins.
I deal with two types, likely secondary, but still have to be careful to have food levels balanced.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
My worst ever herxs lasted quite a while in the beginning the first couple months are a blur of pain the throwing up is not good she may have to go the IV route until she knocks these buggers down.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I would suggest the possibility of partial seizures. Lyme can present seizure-type episodes in non-common constellations of symptoms that Neurologists generally don't recognize as seizures.
I threw up as a neuro symptom for years, and am being treated for symptoms with Lyrica as well as now Lamictal while I continue to improve with abx.
Some thoughts.
Love,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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tailz
Unregistered
posted
Investigate microwave sickness. I think my microwave sickness is worse than my Lyme and I'm suicidal at least once a week, usually following exposure to EMR.
Expose me to toxins and EMR (such as perfume) and look out.
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bettyg
Unregistered
posted
dara,
so sorry to read how sick nicole is; but glad you had the call late this afternoon to work out these thigns.
posted
Dr. C said hard to tell how much is herx and how much is her stomach just can't take all the meds.
She for sure went up on dose too fast either way.
He's switching her to Ceftin (cefuronxine?) and told her to start with just a 1/4 pill, go up by a 1/4 every day until too much then back off to max dose tolerated.
I hate this. I know you all do too with your own similar struggles and I am just whining.
But I hate this. I'm not a doctor!
We've basically been handed a two inch thick stack of options and "try this and that's" and told to figure out what works.
He gave her a stack of precriptions for all different antibiotics, plus all kinds of detox and other supportive treatment options that we are supposed to sort through and try till we get the magic recipe.
But it seems each protocol has a downside listed on some other page and works best if you combine with such and such, but worse if take with whatever, but protocol 1 and whatever are each listed as a proirity, but in some other sections it says they can't be done together...
I know this is as good as it gets and is way better than some mystery disease that no-one could fix, which is where we were at 2 weeks ago, and I ought to be grateful as hell.
I know Dr. C is great and the stack of try this and that is way better help than we ever have gotten enywhere else.
Because at least between midnight phone calls telling me she is going to kill herself there are glimmers of hope in her attitude.
And I am gratreful in my own twisted resentful kicking and screaming childish way.
I guess I am just scared because I think the answer is probably in that maze of "try this and that" sitting in confused paper stacks on the couch, but maybe I am not up to the task of finding my way through it.
Maybe I am not smart enough to put it all together.
Maybe I won't try "this" and "that" in the right order or combination and I will get the call that she's dead anyway.
I can't leave it to her to figure out because she is no longer capable of even figuring out how to get to the grocery store 4 blocks away.
Her dad, who she lives with, won't put the effort into it. He wouldn't even go over things with me because it was too much trouble for him to be a second brain and he is sure I "have it all under control". Ha!
I'm afraid I am going to fail her with the answer unseen in my hands.
Dara
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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posted
Dara, One year ago this month, my 22year old son, Dan was bedridden with seizures every 2 to 3 days, headaches, back and neck aches, muscle spasms where his hands looked like claws, his feet turned inwards, so that he couldn't walk, he couldn't tolerate light or sound, slept 14 to 16 hours a day, and was hearing voices. He was afraid that he was losing his mind and that he was going to die. We thought he was going to die too!
The first week after he started treatment, he got so much worse and he became violent. The LLMD had told us that this could happen, but it was very hard to deal with. But when he was coherent, he told us that he felt that something was getting better and we started to see small signs of improvement.
After a year of treatment for Lyme, Bartonella and Babesiosis, he is so much better. The psychosis and the rages are gone. All of his physical symptoms are gone. The fatigue is so much better, he can exercise and his cognitive skills are coming back, so are his personality and humor!
I felt the same way you do when he was first diagnosed and I was faced with all the meds, the supplements, figuring out how to time all of it. What if I make a mistake? You might be feeling a little shaky right now, but somehow you will find the strength to make sure that Nicole gets the right combo. You have fought so hard to get this far! Trust your gut feelings; no one knows Nicole better than you do.
My best advice to you is to educate yourself; read, read, and read some more. My money's on you!! You can do it!!
You and Nicole are in my prayers!
Take Care, Karen
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Dara,
You don't have to figure this out alone. That's what we are here for.
My LLMD discusses treatment options with me, in part because he knows I keep informed.
I can't imagine him giving me a pile of papers and having to figure it out on my own, especially in the beginning.
I guess the best advice I can give in this regard is to discuss this with other patients of Dr. C's who may be able to guide you according to how they have handled it.
Also, read everything you can on this site. Use the search feature, and ask questions. Put new questions in new threads, so they don't get lost.
My ex has the same attitude as yours when it comes to our kids and health problems.
He loves to tell me what a great job I'm doing as he sits at home doing his own thing.
It's happening right now as I am in NYC for the third week assisting one of our sons who was hospitalized with a very severe case of pneumonia which required surgery to bring under control.
He did show up for that, but then breezed back home. Typical!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
It is overwhelming.
I wish I had someone (like you) to have helped me sort through it all.
Despite limited brain capacity at the time, I learned through trial and error
And by coming here. If you are ever unsure...don't do anything
Without talking to Dr. C's office....
I've been through many different medicinal combos....some worked,
Some didn't...some gave me horrible side effects....some were just too much.
I learned to start one med at a time. I usually would take a new med
For at least 3 days prior to adding anything into the mix.
That way if I had a problem with one, I could quickly identify it.
I learned that the hard way by taking all my meds at full Rx at the same time.
I couldn't walk. It wasn't pretty as I have two small children.
Take a deep breath. You're doing great. Think of how many of us
Have messed up our meds/taken too many/forgotten to take them at all.
My husband has had to switch antibiotics several times in the last couple of months.
It is sometimes like a shot in the dark to find the right combo.
Take a deep breath. We're here for you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm glad to know you're in touch with Dr. C.
As for the switch to ceftin, that's been my primary abx throughout treatment. For me, it's been a lifesaver...
That said, I also couldn't begin to described how severe the herx was on it. Make sure she takes it slowly.
Keep us posted!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Sorry 'bout that little tantrum there. Deep breath. I can do this. Thanks.
N is feeling a little better tonight. She hasn't thrown up in a couple hours. We're going to let her stomach settle for a while, get her rehydrated and then will see when we can start adding meds.
Thanks.
Dara
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Hi N's Mom.
I vomited on doxy for 3 days. Doc (regular doc though, not LLMD) took me off of it and switched to another antibiotic. I wish I had stayed on it, knowing what I know now, but sometimes a body can't handle it. I agree with all of the other comments folks have posted- ramp up very slowly or switch to something else.
It must be very frustrating to be so far away from your daughter during this time. You are doing a wonderful job supporting her and educating yourself, not letting the distance get in the way whatsoever. Prayers, dawn
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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bettyg
Unregistered
posted
dara, YOU are doing an OUTSTANDING JOB in having gone w/nicole to dr c;
been reading the volume of info you now have in your hands;
being her NO. 1 SUPPORTER and a shoulder to cry on when needed;
Dara, say an extra prayer to God or whoever you believe in; ask for his mercy and guidance to get her through the deep dark dark days/months to get her into remission.
your ex should be kicked in the butt! and to be living in SAME HOUSE; shame on him!
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Dara,
Please see my thread below. It is quite possible your daughter cannot handle antibiotics.
No amount of antibiotics in the world is going to help Nicole if her body can't handle them.
As for going through the stacks of papers, take it one step at a time. Looking at all the options does make it seem overwhelming. Just break it down if you can.
Personally, I'm thinking the doctor should be zeroing in on the best treatment choices through testing. He should prioritize the options in order of which seems most likely to work and start working through them.
As for the Oh-So-Helpful father, ignore him. Why is she living with him if you are the one who is actively involved? To be near the doctor?
The allergies are a clear indication the body is toxic. Too many toxins for the immune system and the immune system begins to react to everything. I had/have allergies for 20 yrs. Looking back, I believe the allergies were the first warning I was headed for something chronic.
Detoxing can be very dangerous too. It must be done slowly. My doctors have been detoxing me for almost two years. I have gotten better and better with this approach. Still, just last month, my doctor said "Don't do a sauna yet. It could make you psychotic or land you in a hospital."
So don't run out there trying tons of detox products on your own. Work with a knowledgeable doctor. LLMDS are not necessarily knowledgeable in this area.
A really benign place to begin detoxing is water, lots of it. Nicole needs to drink 1/2 her body weight in ounces. ie: 100lbs = 50oz water. Eat lots of cruciferous veggies like brocolli, brussel sprouts, cabbage, onions, garlic etc. In addition to being very nutritious, these veggies are detoxifying.
For a long time, I would mince fresh garlic and take a teaspoonful and just swallow it like a pill. It goes down easily with water and you barely taste it. Today, I just throw a clove into my fresh veggie juice.
Garlic is a great chelator as well as it has anitbiotic and antiviral properties, so very helpful in that matter too. Garlic is a blood thinner which helps those of us with fibrin (thickening) in our blood. Caution to anyone with free bleeding issues.
Garlic is particularly effective against H. Pylori (bacteria in the gut) and MRSA. Cooked garlic has no medicinal value whatsoever.
Deep breathing (Yoga style) is another simple, effective and safe detox.
These are just some simple and safe suggestions she can try. Best thing is to find a doctor trained in these matters. You can work with both the LLMD and the other doctor simultaneously.
Just pushing drugs is not always safe nor the right answer. A genetic test showed clearly that drugs are poison for me.
As far as herxing goes, herxing may be a sign the drugs are killing, but they are also a sign the killing is occuring faster than the body can clear the toxins. Herxing is the body screaming "SLOW DOWN".
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
We just took our daughter to Dr. C, too, so we have the same stack of information you have. It is overwhelming. He emphasized the antibiotics as the real answer and most of the rest was just to try. He told us that he was "the filter" and could tell us what had worked for other patients. Try not to stress about trying everything in there.
Posts: 984 | From US | Registered: Dec 2007
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It is so hard for those of us that have sick children. When we first find out that they have Lyme it is so overwhelming. Some of us have LLMD's that walk us through the treatments others have LLMD's that expect you have the knowledge to figure things out on our own.
Some of us did our homework and knew about all the detox and supportive supplements. Others don't have the time or don't know where to go for information. Treating Lyme is much different from just going to the MD for your child's "normal" illnesses.
I was lucky, I had read and read on here before my daughter was offically diagnosed with Lyme. I had figured out pretty much what she had before she ever had a WB or saw a LLMD.
I had her on most of the things to support the treatment when we had our first appt. with the LLMD. He has always let me do what I wanted with her as long as he approved it first.
We have found though out the past 3 years that she is very Poisoned by Antibiotics and genetically unable to detox. If you read through the link that Luvs2ride has posted above you can educate yourself on this side of treatment.
We have been thought H*ll with my daughter because of this. Personally, after all the problems we have, the genetic testing is a good idea before starting antibiotic therapy. Had we known what we know now we could have saved outselves lots of money, pain and heartache.
You have to do what is best for you, this disease is different for each individual. What works for one, doesn't always work for the other. I think that is why your LLMD gave you so many options to try.
Good Luck and come here often and read and ask questions. There are many very informed people that "live" here. We try and help the best we can with the knowledge we have obtained from living with Lyme and co infections.
Just please remember, we are just like you. We are trying to find what works best for us or our loved ones. Most of us have cabinets full of unused things we have tried that didn't work.
Nothing is a quick fix with Lyme, it takes time and lots of patience and research.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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posted
I am so sorry for the rough ride your daughter (and you too) has been enduring.
I'm not an expert on Candida/yeast, but I do remember reading in Dr. William Crook's YEAST CONNECTION that some folks have a horrible time with even the tiniest dose of nystatin.
If Nicole is so very sensitive to molds, maybe the nystatin is too strong for her. Would it be possible to stop taking it for a while just to see? Might be worth looking into...
Sounds like she's taking a lot. Glad to hear there is subtle improvement. She's lucky to have such a wonderful Mom.
Saying extra prayers,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
REGARDING COMMENTS ON CONFUSING INSTRUCTIONS FROM LLMD:
I didn't mean to give the impression I am unhappy with the LLMD.
I was frustrated with the situation. And I realize the situation is this: there is no magic answer book with step by step instructions for a quick and easy cure.
There are many things that have helped some patients and nothing that helps them all.
We have to try different things until we figure out what helps Nicole.
The LLMD was very helpful when we called him.
We are in the process of getting more testing done so we can better determine what is likely to help Nicole.
Dara
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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posted
REGARDING ALL COMMENTS ON Nicole being toxic:
I agree Nicole is toxic, just don't know how to fix it.
Before we even saw the LLMD I had her change her diet (she was desperate enough to listen to me at that point) to mostly fresh veggies and protein.
She had been a "vegetarian" (read: no meat, lots of junk) which I know was bad for her as she was born with demyelization of her nerves and needs extra high quality protein to maintain myelin.
They said she was profoundly ... what word did they use... anyway, they meant profoundly retarded and that she had an autism like syndrome, would never be responsive, etc.
They said to put her in a home.
But I found an obscure reference to demyelization in premature infants, did some research, followed the recommendations and by the age of 2 she was normal.
But I digress.
Anyway, I could see she was loaded with yeast so I had her temporarily cut out the fruit and carbs until she got that under control.
Also cut out all foods she was allergic to.
And all junk. Trans-fats, additives, dyes, etc.
Have her drinking lots of water, trying to get her to put lemon in it which she hates.
Have her drinking green tea daily plus some others.
I have her eating lots of garlic and onions.
I don't know much about detox so I did a bit of research.
Horror stories of too much, horror stories of too little.
So we are just trying to reduce her ongoing added load with purer foods, lots of water, green tea, hot baths and showers.
I don't know what kind of doctor to take her to for guidance on this stuff so I have appointments in 2 weeks
- when she will be here again
- with an integrative doctor - does western and complementary medicine (he is very big on detoxing) and a naturopath.
We are also seeing a woman the locals refer to as the ``Witch Doctor'' who is a German trained homeopathic doctor who also does a lot of bizarre things like energy re-alliance and other stuff.
Everyone I talked to who has used her said they don't believe in the things she claims to be able to do.
Which begs the question, then why do they see her?
Because it works, they say.
Go figure. Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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posted
REGARDING QUESTIONS ON WHY Nicole is still in the states instead of here with me in Canada since I am directing her care:
1)Nicole has some follow-up care already in place in the states, not much but something.
She also has minimal health coverage which pays for her drugs in the US.
She has none of that here.
It took time to get appointments with people in Canada so we can see if we can put together appropriate care at an affordable price here in Canada.
We have several appointments in two weeks with a naturopath, an integrative (western and complimentary medicines) doctor, a homeopath and a neurologist.
She still needs a psychiatrist and therapist.
2)Nicole has serious psychiatric symptoms which make good decision making difficult for her.
She is very afraid to leave what she knows.
She is also afraid to leave the therapist who is helping her deal with the psychiatric symptoms.
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Nicole went off all meds except probiotics until her stomach settled.
Then she got bronchitis.
Put on Zythromax for that.
These are the only things she is taking currently.
Hasn't thrown up in 2 days.
Feels terrible, thinks she is going to die.
Very interesting occurrence:
LLMD switched her from MS Contin to Oxycontin because after taking MC for a couple days it stopped working.
MS Contin is a very powerful drug.
Oxycontin even more so.
The Oxycontin has no effect on her what so ever.
She called me last night and said, ``Mom, I don't think the problem is that I need stronger painkillers.
I think there is something happening that blocks them from working because they don't do anything for me even when I take twice as much as I am supposed to.''
She went on to say that she no longer felt ANYTHING with any of the drugs.
No physical relief, no physical, mental or emotional sensation at all.
Now, I've seen a 300 lb man with long term chronic pain, so he has lots of experience with painkillers and a bit of a tolerance, drooling on the couch from 2 Oxycontin.
Nicole was talking to me just as coherent as I have ever heard her - on 4 of them!
So we got to talking and she tells me that when she throws up, usually 2 - 4 hours after taking her meds, they are all still there in her stomach completely whole and unaltered after all that time.
Now, since typically 50% of the stomach contents are gone after 2-3 hours and 100% after 4-5 hours, doesn't this seem a little strange?
And it is not just pain meds.
She says every time she throws up EVERY SINGLE MED SHE TOOK WAS STILL THERE, UNALTERED IN ANY WAY.
So she started paying real close attention and determined ALL HER FOOD WAS STILL THERE, UNALTERED IN ANY WAY.
What's up with this?
Is this why pain meds don't work, her body doesn't break them down?
Or are they not supposed to break down in her stomach and this is normal?
In which case, how can she be totally normal on 4 oxycontin?
So, my brain is already full for the day, but I am trying to figure this out and I am wondering if she doesn't make enough stomach acid?
And if so, does that mean she is a good candidate for the LLMDs HCL Protocol?
Dara
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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posted
She is terribly, deathly allergic to vinegar.
Gives her migraine headaches.
Have you ever heard of that before?
Dara
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Sorry I can't wrap my brain around much right now and this is way out of my league.
One thought, though. Can you find out which drugs can be mashed with a mortar and pestle, or capsules opened into water? That might offer better absorption.
Of course, not all drugs are safe to do that with, but you can ask your doctor.
Even if it's technically safe with a certain drug, you might ask about how her mouth and esophagus can handle it in regards to burning or irritation or if a certain liquid could resolve that without interfering with the drug.
There must be other ways.
Transdermal patches ? Or making your own, with your doctor's advice ?
posted
I would have her have a stomach emptying study done..it isn't invasive.
I had this done and found out I have gastroparesis and I believe it was an 'extra' given to me by Lyme. For me, it comes and goes but it is important to know for many different reasons...ie treatment, eating habits, medication taking, etc.
Posts: 561 | From mass | Registered: Jul 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
This is a must read article. It explains how Lyme can cause vomiting and gastroparesis. Here are some of excerpts below, but the entire article is excellent.
"Bell's Palsy of the Gut" and Other GI Manifestations of Lyme and Associated Diseases
PRACTICAL GASTROENTEROLOGY April 2006 by Virginia T. Sherr, MD
Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians. Borrelia burgdorferi, the microbial agent often behind unexplained GI symptoms--along with numerous other pathogens also contained in tick saliva--influences health and vitality of the gastrointestinal tract from oral cavity to anus.
Disruptions caused by GI borreliosis (Lyme) may include, amongst many others, distortions of taste, failure of other neural functions that supply the entire GI tract--paralysis or partial paralysis of the tongue, gag reflex, esophagus, stomach and nearby organs, small and/or large intestines ("ileus"), bowel pseudo-obstruction, intestinal spasms, excitability of gut muscles, inflammation of lumen lining tissues, spirochetal hepatitis, possibly cholecystitis, dysbiosis, jejunal or ileal incompetence with resultant small intestine bacterial overgrowth (SIBO), megacolon, encopresis and rectal muscle cramping (proctalgia fugax).
Parallelism between Lyme borreliosis-caused paresis of facial muscles supplied by Cranial Nerve VII and Lyme-caused gastrointestinal paralyses suggested a pseudonym to the author--Bell's palsy of the Gut--despite the fact that these syndromes are related to different types of neural fibers and only occasionally occur together.
Since similar injury to all sites may be etiologically related, however, otherwise unexplained gastrointestinal symptoms should be considered as possibly related to Lyme borreliosis and/or its co-infections until proven otherwise.
Borreliosis-caused, gastrointestinal tract paralysis and related abnormalities can occur anywhere along the entire length of the tract (9,10)--involving, for example, functionality of taste buds (11,12), muscular strength of the tongue, gag reflex, ability to swallow, gastroparesis, peristaltic retardation (or excitation) related to small bowel competency, dysbiosis, total arrest of peristalsis ("ileus"), pseudo-obstruction (sometimes associated with Bell's palsy) (13), colon dysfunctions, encopresis, proctalgia fugax and the final act of defecation.
"In 5%-23% of patients with early Lyme borreliosis, there can be gastrointestinal symptoms such as anorexia, nausea, vomiting, severe abdominal pain, hepatitis, hepatomegaly and splenomegaly. Diarrhea occurs but is seen in only 2% of cases" (14). Regardless of the site, spirochetes' disturbing symptoms may come and go spontaneously, often temporarily resolving in a matter of hours to days, although resolution does not imply cure. As with Bell's palsy of the face, these gastrointestinal conditions may endure or only partially remit (15).
One of the blessings of modern medical investigation is a positive PCR (A direct test--polymerase chain reaction-- capable of pinpointing an offending microbe's DNA).
This test can be performed on specimens from the patient's blood, serum, plasma, CSF, urine, mothers' milk, and all biopsy tissues. PCRs can play a vital role in diagnosing tick-borne diseases especially those affecting any organs or associated tissues. "Lyme disease is usually diagnosed and treated based on clinical manifestations. However, laboratory testing is useful for patients with confusing presentations and for validation of disease in clinical studies" (29).
DNA tests are especially handy because they can be utilized by way of biopsies harvested from inside the gut during otherwise routine colonoscopies and endoscopies in cases where the diagnosis is uncertain. PCR's are highly specific although they are less than ideally sensitive so that a positive test is a reliable indicator of Bb infection while a negative test simply does not exclude Lyme and does not indicate a lack of infection (30).
(last part of a case history) About a year later, Mrs. M, again fatigued, developed right shoulder blade pain and afebrile nausea after eating greasy foods. Surgery to remove her diseased gallbladder was scheduled. Treatment (doxycycline) for suspected but unproven persistent Lyme was begun.
The family physician asked that biopsy specimens of the removed gall bladder be tested in a reference laboratory specializing in tick-borne diseases (31). The resultant PCR test on her gall bladder tissue was positive for DNA of the causative Bb spirochete of Lyme disease. This PCR biopsy confirmation of a seronegative patient's Lyme diagnosis illustrates that, while Western Blot and PCR blood sample testing, especially for active late stage LYD, may not show a positive antibody response, a tissue PCR analysis may confirm the diagnosis, even when the patient has previously been treated.
PCR's done on blood are less satisfactory since Bb prefers an in-tissue environment. Treatment of Lyme disease by IV Rocephin can lead to gall bladder sludging. In this case the GB stones were considered to have predated the IV treatment.
A suddenly spastic or immobile esophagus or similar paralysis of the stomach muscles may represent esophageal and/or gastric paresis or spasm from Lyme neuropathies (5). Infection influencing the vagus nerves has been documented to cause paralysis in other diseases (8). Additional Bb-related symptoms may manifest as gastroesophageal reflux disease (GERD), early or absent satiety, GI bloating, nausea, vomiting, and atypical colitis wherein the pANCA test may be helpful.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Usually she considders it a GOOD night if she gets 3 hours.
It must be the zythromyacin she is taking for the Broncitis. (???)
Or maybe a coincidence, but since it has been YEARS since slept this long,
and such a HUGE change, not a small one, I am thinking it is the zyth.
Zyth is on the LLMD's list.
Since her instructions from LLMD are to continue each antibiotic until she plateu's,
I am going to call the LLMD and see if she should stay on it since it seems to be helping,
even tho it is not the one he told her to take right now.
I am sending info on gastroparesis to her local doctor who is following the LLMD's recomendations.
Thanks - D
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I would absolutely keep her on it! I'm on Zith right now for Lyme and Myco. I've had very similar symptoms to Nicole. My guts seem very much involved. When I was at my worst I would shake violently after eating something. I also get terrible pain in my guts/intestines, all the way from my throat to the other end. I had a colonoscopy/endoscopy last year and they found reduced stomach motility and hiatal hernia. I was also later diagnosed w/POTS syndrome.
I'm a lot better than I was since starting treatment. If since starting the Zith she is sleeping and Zith covers Lyme and other things she should stay on it in my opinion. The kid needs to sleep!!!! Has she been tested for Mycoplasma?
Posts: 2541 | From Northeast | Registered: Jan 2008
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Your daughter is lucky to have you trying to help her out.
Regarding your comment about an allergy to vinegar. I suppose it is possible, but my guess is that the vinegar changes her stomach ph and could cause a yeast/candida dieoff and that is what is causing the headaches.
Something natural like olive leaf extract might be easier to tolerate for candida than prescription meds such as nystatin or diflucan.
It sounds like your daughter needs to heal her stomach and address the candida issue as a first priority.
Good luck and keep reading and learning.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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