Furious and trying not to cry because i am so da.mn mad

[susiestar]

We are going home today. The EEG showed nothing, Jess was able to do what the therapists wanted (for 30 min at a time with 2 hours in between the 2 sessions) and while the doctor was here she was able to suppress the shaking.

So this is a "somatic" result of her depression and anxiety.

Gee. Didn't I already spend 18 months (at the end of November) dealing with treatment for that, which had exactly zero effect?

Now the doctor wants a psychiatrist to handle this. One in OK. I guess they don't believe it is real pain because she smiled at them. Actually I KNOW this. the doctor actually pulled me into the hall and poo-poo'd the idea that she was actually in pain. It is an "excuse to not do things". He saw her lunch - spaghetti with turkey meat sauce, scalloped potatos, fries, broccoli bites (fried broc and cheese), and a roll and a sprite and thought it was all she was eating. She had an apple and an orange about 30 min before because she wanted fruit before lunch so she would eat more healthily when it arrived. She also had already eaten corn and strawberries.

So her diet is a sign of her depression, and if she would just exercise, take a multi-vitamin and a vit D supplement she would be just fine.

No one CARED that she hurts like hell. We were smart enough to not let them know that sometimes the pain is so bad she doesn't want to live. That is the first thing that makes them jump to depression and anxiety.

I am SURE that she has depression AND anxiety. But they are CAUSED BY this problem, not the cause OF this problem.

We were SUPPOSED to get "full neuropsychological testing" while we were here, but they decided she was so nice she didn't need it. I wanted it just to see what it said. The neuro said he could "tell what the tests would say with-o doing them" and that they would just show anxiety and depression.

I am ******. I do think that she is showing signs of fibromyalgia. She is a couple of years older than I was when it started. No one has tested her for PANDAS, though I have BEGGED, or lyme. I was actually told by the neuro here, and the pain doctor, and two nurses that both lyme and PANDAS are not real.

Gee, I hope everyone who has been helped by treatment for them gets that bulletin. They can stop treatment and they will magically be just fine if they see a psychiatrist and get antidepressants.

WHY THE H*** DOES EVERY FEMALE WITH A PROBLEM THAT IS NOT INCREDIBLY EASY TO IDENTIFY GET TOLD IT IS ANXIETY AND DEPRESSION??

Are we REALLY teaching all the docs in the developed world this? If so, how do we smack whoever is teaching this (all of them) over the head with a hammer? A SLEDGEHAMMER!!

Anyway, we are going home. She will be off of the lamictal because they saw no seizures on the EEG (though she had lamictal 12 hrs before, I don't know how long it stays in the system if you have been taking it for a year.). If she starts having "short days" we will go back to the doctor for that. We will continue to see the doctor for her migraines (neuro that we hate) because she has GOT to have a preventative for them. 12-20 migraines a month is too much. The doctor refused to even discuss them. Said it was too much caffeine. She rarely has caffeine. Only when she gets a migraine because the neuro PRESCRIBED it for her to take with the imitrex or midrin to make them work better. He actually rx'd the amount in 36 ounces of coffee. We give her 8 oz of coke instead because the rx amt in the pill is just too much.

She is going back on the muscle relaxers. We have plenty of refills to take us several months until I can find someone with some understanding.

I cannot handle having her off all of the medications that help her with the pain. She is just in too much pain and she will either go nuts or do something stupid. I know my kid. I couldn't live with myself if she did something stupid to herself, something permanent. We are not there yet, but if she goes a few weeks with-o anything to help with the pain she very well might get there.

Thanks for all the encouragement. She really tried to get through to the docs and nurses. She is who she is and I cannot make her be someone else. She is sweet, and she does try her best to cooperate if she thinks there is a reason for something. She didn't complain a lot about the pain because they told her many times that all they could do for her is hot or cold packs. So she didn't fuss or act like a difficult child would when told that. She figured there was a reason to do a medication wash, which the doctor had stressed was important. So she gritted her teeth and coped. W.o being ugly to anyone.

I bet if she were a difficult child we would have a totally different outcome. PCs really get scr**** in this world. Esp as kids with problems.

This hoovers mightily. I could refuse to leave but they wouldn't change anything and they wouldn't DO anything. They just told me to find docs in OK. Gee.

 

[HaoZi]

That really bites, I know you had high hopes going into this place. *hugs* to you and Jess, I hope you find her some real help soon.

 

[AnnieO]

Oh, no, Susie. Hugs... I would be livid, too! Just because she's a good kid who tries. And here we thought it might be a breakthrough!

I'm saying lots of prayers for Jess, starting immediately. I'm irate on your behalf. I wish I had something to say or do that would make it better... Sigh.

 

[svengandhi]

I am so sorry about your and Jess' suffering. However, as to PANDAS, it IS real. My oldest son has it and I have done extensive research into it, my son was evaluated at NIH. Jess' symptoms don't sound like PANDAS. They do sound more like fibro and if you have it, that's a red flag to me. Have they looked into chronic fatigue syndrome?

I am so sorry that they are releasing her so soon.

 

[susiestar]

No. No one will even BEGIN to look into CFS or fibro for her. I also have CFS but always think of it as part of the fibro. I didn't think it sounded like PANDAS because she didn't have a strep infection for many months prior to this starting and when I looked at it months and months ago it didn't sound right. I DO know it is real. I was totally ASTONISHED when they told me PANDAS isn't real, fibro is simply depression and anxiety (gee, then why didn't hte MANY YEARS of treatment for anxiety and depression make any teensy difference in MY fibro??), and this is "all in her head". Yes, the idiot doctor USED that phrase.

in my opinion we are on our own as we always have been. Largely because she is not a difficult child. I ran into the same thing as a kid. At least my mom found a doctor who treated adults and would treat me. He gave me the wrong diagnosis but at least he treated my symptoms. I have 5 months to find someone who will help her, cause we have 5 refills on her medications. I can stretch it because the muscle relaxers are at twice the dosage I am comfortable giving her. Either way, this child will NOT go without treatment for the pain. No matter WHAT I ahve to do. I won't get her hooked on anything because that is just another problem we don't need. But I will NOT punish her for being a easy child.

 

[janebrain]

I am so sorry, this just makes no sense to me. I feel so furious along with you. Sending big hugs to you, I am so sorry you have to go through all this cr@p.
Jane

 

[Mamaof5]

Oh FFS..this is 20 yrs ago mentality. Fibro doesn't exist then why is it recognized for disability where I live? Why then are there fibro patients on disability in the States as well? Why is it that they are doing research and studies on Fibro and even found the third ever retro virus in human history that is associated with both CFS and FMS (and prostate cancer as well by the way)?

Why is it that we have both legit for fibro medications and off label uses for other medications (ex: tegatrol is off label use, cymbalta is on label use and approved by FDA for fibro, only one too).

Why do doctors still think fibro is a disease of the mind and hypocondriac?

 

[svengandhi]

My friend takes Lyrica for her fibro and is back to working a f/t job as a sped teacher while going to school and raising a son as a single parent. She says it has been a lifesaver.

The easy child thing peeves me, too. Although nowheres near as serious as your situation, when my daughter was going into HS, she really wanted to attend a performing arts program. It drew from the numerous school districts in our county but our SD would have had to pay for her to go there. They refused to send her. They did send several difficult child's, including the superintendent's own daughter. When I found out about that (supe's dtr was in my easy child's grade), I told my daughter I'd get her in if she wanted but by that time she had decided she liked the regular school and didn't want to leave. Obviously, I believe that difficult child's need and deserve all the services they are entitled to but it does burn me that easy child's sometimes get tossed to the side because they won't make a fuss.

Anyway, I hope that you wil get the answers and relief you need.

 

[Jena]

why don't you have her regular dr just do a blood draw for lyme, that is all it takes. a certain blood test or set of them. than part of fibro is depression anxiety etc. which they state the person has a lower tolerance for pain due to brain nerves etc.

you can begin treating her as though it were and have the blood down meanwhile. it's gone on too long now this is literally years. that's what i think i would do.

(((Hugs))))

 

[DammitJanet]

Im sure there is a lyme literate doctor in OK or you can send the blood off to one. Hope would know. As far as fibro, thats basically a diagnosis of exclusion and tender points. If susie has the lab work from this hospital she can check that. The MRI would show any abnormalities if there were any so we can check of certain things. I still want to know what to look for as far as dystonia. I would have to look that up to see what the diagnostic criteria is for that. Fibro cant be seen on a mri or an xray.

 

[susiestar]

I cannot find a doctor to do the blood test for Lyme, or anything else.

As for fibro, it causes depression and anxiety rather than being caused by it. I know a LOT of women who NEVER had depression or anxiety before they got sick with fibro. NO history of either in their families as far back as they have found. One of them is very into geneology (sp?) and has traced her family back a long long way. Her parents are still alive and they know of zero relatives who had ANY symptoms of either, though of course back then no one was diagnosis'd unless it was severe. Either way, fibro is related to those things, but treatment for anxiety and depression simply do NOT cure or fix or even deal with fibro. Cymbalta's effect on fibro is not well understood and it does NOT help a significant number of patients. It is thought that fibro is a nerve disorder, not a mental health disorder. Of course the "best" docs to treat this type of problem, given what is known about what truly goes on with fibro, is a neurologist. I have yet to meet a neuro who even recognizes it as a disease, in spite of having MANY rheumatologists and immunologists and general practice and family practice and internal medicine docs each try to refer me to a neuro for fibro treatment. Over twenty four years I have had these docs, some of them very up on the latest research on fibro, try to refer me to a neuro for treatment of fibro. Neuros want things that show on MRIs or EEGs. Period as far as I can see.

Sara PA (old member here, some will remember her) often said that EEGs only capture seizures in about 20% of the brain. Just because a doctor cannot see a seizure on an EEG does NOT mean that seizures are not happening. OFTEN the docs are wrong because the seizures, which can cause all kinds of difficult child behaviors and many many other things, are in parts of the brain that they can NOT test, analyze or figure out. Instead of admitting this, neuros seem to fall back on the "I am the doctor and I am the ONLY one who knows what is right so you MUST bow down and take my words as the GOSPEL." and they tell male patients that it isn't happening and female patients that it is all in their heads, aka anxiety and depression.

I was completely appalled at how out of touch with current research on real disorders like fibro and PANDAS this guy was. Not just current research, research from fifteen years ago! He may be the "expert" in pediatrician movement disorders for a big part of the country, but I am unimpressed with his knowledge and behavior.

I am ****** that for a WEEK my daughter wanted to puke most of every day, did NOT eat much, or in a healthy way because her stomach was upset and they would not even let her have prilosec, saying the nausea is from the anxiety and depression and I need to "not feed into her problems by giving her medication for it". Gee, do y'all think 5 months taking 5 aleve OTC tablets (insurance would not cover the 1000 mg naproxen he wanted so he upped it to 1100mg or 5 (220mg) OTC tablets) three times a day would mess up her digestive system? Then lowering it to 3 tabs 3 times a day and insisting she stay on it even when we asked to take her off it for the last 3-4 months would keep it upset and even make it worse?

The nurses seemed to "get" that one, but until last night not a single one of them made any notes about it or spoke to anyone who might make notes about it. Even the nurse doing the intake and the one who came in and did the history did NOT write this down. Not even a brief note that she has had stomach problems since she was put on a large dose of aleve.

I think what upsets me even more is that about half of what they said they were going to do, that it was CRUCIAL to get done, was just ignored. She was supposed to have in depth, intense biofeedback, complete neuropsychologist testing at least 3 hours each day (per the intake instructions and what I was told by the doctor and by the nurses who did the intake), AND a psychology AND psychiatry evaluation. She had the EEG and 2 short sessions of biofeedback and hypnosis, a 30 min PT consult and a 30 min Occupational Therapist (OT) consult. Since she can dress herself, walk by herself, write a very neat, intelligent and interesting paragraph, then this MUST be anxiety and depression. We had NO anything from a neuropsychologist, a therapist or a psychiatrist. When did a neuro become able to give a qualified psychiatry evaluation? Gee, he didn't. They did have the pain doctor come in, but since Jess was "ok" for the 2-3 mins she spent in the room then she wasn't "needed".

I am incredibly sad and disillusioned. It will take me a couple of days, but I will just search harder and fight more to figure out what my child's problem really is. In the meantime, I will make sure she learns what she needs to pass her GED so she can go to college. There is NO WAY she can go to regular high school, and NO WAY that she will set foot in our alternative school - not when the principal is none other than the sp ed teacher who fed all Wiz' problems until he went nuts.

Sorry this is so long. I know you are all here for us, and it means more than I can say. I really needed to vent, so thanks for reading it all.

 

[Hound dog]

((((hugs))))

You already know my feelings about this.

 

[klmno]

I have been reading your threads to keep up but haven't posted because I simply don't know what to say about all this. I think your levels of frustration and despair has reached the levels mine were last year when Department of Juvenile Justice decided all my son's MH issues had been a result of bad behavior instead of agreeing with my and most highly trained MH prof's opinion that difficult child needed certain issues dealt with before he'd be able to stop the bad behavior. Unfortunately, I had no choice but to give up on pursuing the route I'd been taking- but it felt like a part of me died. I know your and J's background, challenges, etc are completely different than my son's and she hasn't been the difficult child he has- I'm just saying I can relate to feeling like others who should be addressing things that could help are continuing on a path that has already proven to be ineffective while our kid gets progressively worse. And we have no control of it, yet we're the parent and are supposed to be able to do more than sit and watch this happen from the sidelines. I have no answer. I battle this emotional pain from it every day.

 

[Josie]

I wish I could say I was surprised by all of this, but I have been living this same nightmare for 3 years with my daughter. We had a very similar hospital experience. It is quite a shock to find that even going to the hospital offers no hope for even symptom relief and that doctors and nurses seem so uncaring and close-minded. I am not sure I will ever really get over it. There is just no way to go back to that blind trust of the medical profession.

But it is possible to find doctors that are more compassionate. We actually have a doctor now that calls or e-mails to check on my daughter. He isn't even her main doctor any more. He told me he thinks about her a lot. It is because she isn't progressing like he would like, but there is no doubt in my mind that he cares about her and is devoting time, when she is not in his office, to figuring out how to help her.

The test you need to run for Lyme is from a special lab and you will have to pay out of pocket. Some people are able to get their PCP to sign for it, if they take the forms to them. So that might be another option. You will need to see the test results yourself, so be sure you can get the doctor to give you a copy.

 

[Jena]

i hate to be annoying i really do. yet i do not get why any doctor where you are won't do a blood draw for lyme. you can go to any e.r. tell them i think my kid has lyme and they'd do it. it's a round of blood work as i'm sure you know yet it's not a complicated thing to do a blood draw for it. yet if it was lyme you would see other symptoms besides what you are seeing i think. lyme i've heard is really really bad.

you have run the gammet on testing her at this point and for years. if things are coming back negative that's a good thing it really is. although you are so mad right now you could scream look at the positive in it. alot of stuff comes back negative and shows no abnormalities. i'm not saying that the doctor's are right regarding pain etc. yet what i am saying is that it isnt' indicating a huge problem right now. fibro your right, it's cart or horse thing which comes first doesnt' really matter now whether it be anxiety or depression first. fibro is a new diagnosis from what i can tell. a doctor once told me it's symptomatic of depression etc. because we ache when depressed.

besides the few other tests that you named to look into i think at this point you gotta start working on the symptoms of what you see and try your best to relax a bit or your going to get you sick. i know the signs been there done that sort of thing.

i get that you say jess reacts differently trying to hide her pain etc. around doctor's because of certain things or you think due to those. yet i have come to learn my difficult child reacts real different with other ppl. was hard for me to see, admit and say oh my look at this little piece of work. yup some is her disorders yet some is her behavioral manipulation to be honest. don't get mad not saying that's jess, yet susie you are such a good mom you would fly around the world to fix a kid. you really are great. yet i think now besides getting her that blood draw for lyme which i'd fight someone for just to be on the safe side you have to start treating the symptoms of this somewhat if that's possible.

hugs i hope you slept well last night. dont' take what i'm saying wrong you know me and i you. i know where you've been with her the road you have traveled. yet take a deep breath on this one and take a break from it than reapproach it with a clear mind. do what you do best. sit down and think when did this start at what point, start from point a with it, write it all down take the emotion out of it a bit.

doctor's said to me the other day about difficult child what good would come from her getting well?i said what? they said WHY would she wanna get well. there's no benefit right now for her. she's getting out of school, has your total attention, etc. well i got so mad i got in truck slamming doors, etc like a two year old myself. not saying it's the same just saying they went behavioral on me with difficult child i wasnt ready to hear that again. yet at end of day they were right to an extent. an extent. small piece. yet took me two days to calm my crazy ass down to see it. not saying it 's true with-all of it with jess, yet maybe pieces of it are at this point. only you know her best.

 

[timer lady]

Susie, my heart goes out to you. My mother went through this with my baby sister (who died of an incredibly rare form of MS @ the age of 4). Like you, my mom knew something was wrong with her baby ~ it was more difficult finding a neuro doctor who had experience diagnosis'g this disease.

Saying all that, don't close doors on any information you may have gleaned ~ no matter how negative you believe it to be. There may be some conversion/somatoform disorder from the abuse from her difficult child brother. While the physical issues can be researched the issues from difficult child must/need to be addressed.

I'm not saying this to cast doubts on what you know as J's mom is going on .... I'm sharing the many things I've handled with the lingering abuse issues that showed up in very unusual symptoms in especially kt.

(by the way, a normal EEG means nothing; mine has been normal & abnormal over the years. It really depends on the time, day, month whatever that the EEG test is given. I'm guessing J has undergone MRI's & CAT scans.)

Please know that I'm not dismissing J's pain or her symptoms. I've seen with kt that while there are physical things going on the lingering affects with abuse must be addressed.

Personally, I'm dealing with what might be conversion issues with my speech due to the stress over the last almost 11 years. While my brain injury is just that, the ongoing speech issue appear to be (according to my neuropsychologist) emotionally based. I'm still working with a speech pathologist however I'm doing therapy 2x weekly. I've stuffed too much over the years ~ it appears to be coming out in my speech issues.

Just sharing with you how strong the mind, the level of stress, fear, anxiety & what not is on the body. I was embarrassed beyond belief but had to be educated that I have no awareness that my mind is taking over parts of my body. It's the end result of the mind finally reaching out to take care of the body ~ forcing the issue.

 

[Star*]

Susie -

This isn't the only doctor in the world. Just my .o2. I'm sorry for your frustration and wonder if you couldn't just get a doctor to 'trial' treat her for FM and see how that goes.

Hugs -

 

[susiestar]

I have zero doubts that she will need help repeatedly over her life for the issues with Wiz. My strong doubts in this case are because she had therapy for many years when we discovered it (almost 3) and then again for about 9 mos after the first doctor said this was anxiety and depression. She works well with the therapists and the psychiatrist, always is their "favorite patient" even back when she was screaming and crying over what Wiz did and how we didn't stop it. There has been absolutely NO response of either worsening or easing her symptoms and pain. She has worked HARD because she wants to get better and wants to go back to school, back to doing stuff with her friends, wants her mind to work and wants her body to work properly. She delights in playing soccer, going to school, and doing all the typical things a kid her age does.

I DID feel that the pediatrician who said it was anxiety was off her nut. NOT for saying that THIS issue is anxiety but for saying strep, acne, colds, and the flu were SOLELY caused by anxiety. NOT that anxiety made her more susceptible, which I personally have experienced, but for saying that there was no bacterial/virus/hormonal for the acne/etc... other factor causing it. in my opinion that is absolutely crazy, esp after I spoke with the mom's in Jessie's circle of friends - girls she has known and loved since first grade - and every single one of them has been told the same exact thing at least one time by the same doctor. ALL of them have changed to other doctors because it simply is illogical to think that going to a therapist will cure strep throat, help acne not scar, or help with colds and the flu. This doctor LOVED to go and tell other docs that problems were caused by anxiety - including one girl's cracked wrist from a soccer game fall.

Even KNOWING the pediatrician was off her rocker, we still went to therapy until we were told that there really was no reason for her to be in therapy weekly, much less more often because it was NOT the reason she was shaking. Jess really tried HARD. Spoke about her bro, even about the garbage with MY bro. The issues with him HAVE gotten worse recently and we are already intending to go back to her therapist because it is a fairly small town and I don't want her to have to fight panic and fear if she sees him somewhere. She doesn't have to ever speak to him again, her fear is real, and based on his behavior, but she still needs to feel empowered to handle this. I also want her to work on the increasing frustration and anxiety caused by being sick with no real answers available.

She isn't getting a payoff that she likes from being at home. She is a very social person and HATES not being in school, in soccer, in classess at the art center (all sorts of arts, not just fine arts), and HATES having to fight her body to make it behave. She was, for my family, incredibly wonderfully graceful, talented at every single sport she tried, and LOVED to sing everywhere she went. She has to fight the shaking to speak and to sing, so she sings a lot less because it results in her neck and body spasming very strongly an painfully. If she pushes too much for too long a day or 2 later her muscles will start to turn to rocks at the very slightest touch. It only happens after she has really worn herself out, but even the touch of her clothing, or a whisper light touch of my finger will make a muscle turn to rock. A firmer touch makes her literally scream. It isn't predictable, but the only thing I have linked it to so far is a LOT of activity a day or 2 before - her trying to do activity like a normal person.

From the beginning the anxiety diagnosis didn't "feel" right, but she really gave it a try, really WORKED to get help if that it what it was. I would have thought, and her therapist and psychiatrist would have thought, that her symptoms would have been made worse by it or would have been eased by it, at least a little bit one way or the other depending on what was going on in therapy, but that hasn't happened.

I still think we can train her subconscious to help with a lot of this via biofeedback. At least to make suppressing it less difficult for her, maybe less painful, if nothing else. Overall, it is just heartbreaking. I HATE it!!!

Thanks for all the info - I really DO appreciate it. We are going to do what we can, and maybe if we jump through this therapist/psychiatrist hoop a couple times more we can FINALLY get to a doctor who will help her.

Linda, from what the docs told me, if she doesn't have a seizure in 24 hrs she doesn't have absence epilepsy. Sounded like nonsense at the time, at least to me, but they were firm on it. I was against the 20 minute EEG results because they only lasted 20 mins and didn't seem to be a representative sample of what was going on in her brain, Know what I mean?? Gee, the doctor HATED that I told him that 20 min wasn't a representative sample of what happened in the rest of her day much less her life, esp when the particular 20 min was selected not by random or by times she was most likely to have problems, but rather by when she could be fit into some other people's schedules. lol.

 

[susiestar]

Jen, a lot of docs CAN run a lyme titer, but the test they run isn't worth squat. MOST docs don't agree with the Lyme Literate docs. the LL docs were the ones who first said lyme was real - a LONG time before any regular doctor admitted that ticks could give us anything but rocky mt spotted fever. LL docs are few and far between, and labs who run the most accurate and sensitive test that is needed are even rarer. MANY people spent decades suffering with what was called hysteria, anxiety/depression somatization, or many other things, even given diagnosis's like arthritis, neuralgia, and other things (diagnosis's of real diseases happened more often if you were male, sad but true), and given lots of therapies that did little or nothing positive. When these people were tested by LL labs and treated by LL docs, they got vastly better, in spite of most of the docs in the US telling them that they were peddling snake oil, not really helping, even that they were making things worse because patients stopped taking what the original docs prescribed. For someone who has just found a tick or a bull's eye rash, the doctor/er test available anywhere is a good idea and can be very effective. Ditto the treatment given. So if you find either of those things, by all means go to the doctor or ER, of course. It is far better than waiting, because then you need a LL doctor and lots of other treatments.

I have seen this from the entomologist point of view. My town is home to a HUGE ag university that has giant areas labelled "Tick Farms" and a HUGE entomology division that studies all sorts of bugs, including ticks.I somehow wound up knowing a couple of the entomologists and the statisticians that helped them with their research, knowing them very very well. We discussed ticks and lyme several times when I was in high school (the 80's), and the bug guys were all very positive that lyme was real, that if not treated promptly with antibiotics then it would cause long term health problems. I think that in years to come, much of the treatment that LL docs use will become the standard because we will recognize the realities of lyme disease.

A LONG time ago, over 20 yrs ago, fibro wasn't thought to be a diagnosis, or it was just a symptom of depression. The doctor who told you fibro was a symptom of depression because we ache when we get depressed might also, using that logic, tell you that arthritis is really a broken kneecap, because a broken kneecap swells up and that is what arthritis in the knee does. Same logic. NOT the same treatment, though some elements of the treatment may be the same. The doctor who told you that hasn't read or studied a single thing in the last 25 plus years. Cause it was about that long ago when it was in mainstream media that fibro might not have the origins known but it was a real disorder and NOT depression, even though some aspects and treatments were similar. I know the timeline because I watched a friend's mom get treated for it and get a whole lot better very shortly after. they took her off of many intense arthritis treatments taht made her sick, and tried managing the symptoms and doing what was then suggested for fibro and the change was amazing. She did NOT get healed, or fixed, or even mostly healthy, but she improved a whole lot which improved all of her life.

I am going to take a few days off of this. Just too tired and sore to cope. I overdid it every day in the hospital, did not have enough of MY medications because I was due a refill but my rx's ahve to be handwritten each month and they were slow this month so I couldn't get to the pharmacy before we left. So I will do a few things today and catch up on sleep. Probably do soemthing tomorrow with the family, but will take it easy.

Love to all.

 

[Josie]

Susie explained the Lyme thing very well. There is a good book that explains the controversy really well, called "Cure Unknown". It is written by Pamela Weintraub who is the Editor of Discover magazine. She is a science writer and wrote the book thinking the Lyme patients were wrong, but came away thinking the mainstream views of Lyme were based on inadequate science. Unfortunately, doctors that follow the LL treatment plans are often sanctioned by the state medical boards. I am not sure why since long term antibiotics are acceptable for acne, it is such a crime to prescribe them for a disease that can be serious, but that seems to be the case. That is why it is so hard to find doctors that will test and treat.

I watched a hearing about Lyme where LL doctors were presenting their case to the Infectious Disease Society of America that their guidelines should be changed. They did not convince them, but what was interesting to me is that one of the IDSA doctors stood up there and was talking about the misguided patients who thought they had Lyme but really had anxiety. He talked about a patient that he said clearly suffered from anxiety and came to him for Lyme treatment. He ruled out Lyme and diagnosis'ed anxiety as the cause of her physical complaints. I was waiting for him to say the parents took her to a psychiatrist and the girl got her life back. Even I might have believed that might be an answer for my daughter if he had said that. Instead, he said it is a shame the parents didn't listen to him and pursued the Lyme path. That was the best case he had, apparently, for it all being anxiety. Where is the evidence that was the case? It doesn't show that she had Lyme, but it sure doesn't show she had anxiety.

The problem I have with thinking something is emotionally based is that almost everyone has something that can be said to be the cause. My daughter was doing well in school, had friends, and was good in sports. She had a happy life. I was told the internal pressure of maintaining all of that was too much. If she hadn't been doing well, it would have been the pressure of not doing well.

The thing is that doctors do their tests and rely on hard science to diagnosis. If they can't find an answer in their tests, they go to a mental problem. Yet there is no hard test for that, either. How is it that they can be so sure about that? Especially when they are not psychiatrists. Also, what if they are not running the right tests or the tests are not accurate?

And here is my list of things in my family thought to be mental but cured by other means:

A's behaviour problems - gone when we changed her diet

B's stomach problems - thought to be anxiety, gone when we changed her diet

my shortness of breath - thought to be stress, gone when I take antibiotics

B's lightheadedness when she stood up - thought to be Obsessive Compulsive Disorder (OCD) and she only thought she would feel faint, gone when she stopped taking Florinef and a beta blocker

B's emotional reactivity and raging - apparently gone with Lyme treatment

Just because they can't find a physical cause doesn't mean there isn't one, at least some of the time.