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Posted 2/25/2015 5:30 AM (GMT 0)
My son has had many absences (most of them excused with doctor's notes) and many lateness at school. The principal at his school left and the new principal gave me such a hard time about his attendance, although he is an honor student, so she could not blame bad performance on absences/lateness. She gave me 2 choices last Friday: go to court or make sure he makes it to school on time EVERY DAY. We went that day also to meet with someone from Cyber school because the school has been trying to intimidate me for a week before last Friday, asking for medical documentation, which I provided, but apparently, nothing was good enough to satisfy the new principal.

Then on Saturday at 1AM, my son woke up screaming from pain in his left ear. I gave him Tylenol and a heating pad and he was still in pain an hour later. Then I gave him Propolis and he was asleep within 20 minutes. He woke up again at 5AM, screaming from the pain and crying. He threw up and had a fever. I called the dr. and we went in on Saturday. He has a ear infection and he is on Cefdinir.

I wrote to the principal what happened and I told her that I can't guarantee that my son is never going to be absent or late given his many medical problems and Monday it was his last day of school in a Brick and Mortar environment.

I know some of you suggested homeschooling and I may consider it, but my son really likes to go to school and I really want to take his wishes into consideration. Also, since the new principal is against me, she will probably love to report me and I really do not want to be dragged to court, I have 2 small children at home and my husband has a a very good but also very demanding job. I've looked on line and there were cases where the public school reported parents that were homeschooling for "educational neglect" or something stupid of that nature, because they were homeschooling and not going to their brick and mortar school.

The fault is that of the neurologist, because I did ask for a letter for a 504 plan (which my son's former principal suggested) but the neuro dr did not grant it. He is an older dr, and very stubborn, he thinks he is always right and he thinks he knows what is best for my son and he thinks he knows my son doesn't have Lyme disease because his test was negative, despite the fact that he had the Bull's eye rash.

So my son is caught in between politics. The state requires the school to report students that are absent for more than 13 days for a WHOLE school year, even if the days are excused by a dr! I don't know how this cyber school is going to work--he has to spend several hours per day on line and he already has vision problems. But it is a bridge to keep him going until I find a dr. to help him either put him into a 504 plan OR give us a letter to excuse his lateness, which have been about half of the time.

I asked the principal what am I supposed to do if he is in pain or he is having a seizure like episode in the morning and she said to send him to school like that because they have 2 nurses. I reminded her I sent him to school on 2 occasions when he was not well and his jaw started to shake on one occasion and he threw up the other time in the nurse's office and the nurse sent him home both times! My husband had to return from his way to work to pick him up and drive him home. Really, how stupid is that, to send a kid that is not well on time to school so that the nurse sends him home! But it is not ok for me to send him an hour or 2 late (but most of the time ONLY a few minutes late) after I make him comfortable to stay at school for most (the rest) of the day ! shakehead

My friend leaves in NYC. She said her daughter was absent due to illness for 9 days and she received a letter at home stating that if she goes pass 10 days, she will have to repeat the year. She was in a private school prior to that and she is 2 years ahead of her classmates, but apparently, grades and performance do not matter much these days! My friend thought they were joking, but luckily she was able to go to school after 9 days and there were no more issues. This is incredible! When will they stop?

Post Edited (Simela1) : 2/25/2015 2:54:04 AM (GMT-7)

Posted 2/25/2015 6:16 AM (GMT 0)
file grievances with the Department of Disabilities. Your son has medical problems, which constitutes in disabilities. I dont know which state you live in. The school district in which you reside, you must file grievances regards this matter. Make sure you have all the documentations. Also what, when and where things were said and done with this new principal. Wishing you good luck
Posted 2/25/2015 7:25 AM (GMT 0)
Wow! I'm speechless.

Are these human beings you've been dealing with? (principal, neurologist) Talk about callous, insensitive bleep bleeps.

This must be so difficult for you Simela. Your son has a very good reason for his absences!

So sorry you are going through this!
Posted 2/25/2015 1:04 PM (GMT 0)
Wow! This story is so upsetting! I am so sorry you are going through this. Your poor son! I'm sure he'd love nothing more than to be healthy so that he could attend school. The new principal is an "bleep"!
Posted 2/25/2015 2:29 PM (GMT 0)
Simela1, I'm so sorry you and your son are being treated this way. I am in the field of education and I highly recommend that you push for the 504 Plan from a different doctor than your Neuro doc. Talk to the school counselor or the district's Special Student Services office for more info on how to get this determination. The 504 Plan simply states that your son has a disability, and requires any school/school district to accomodate his needs in the least invasive/least restrictive way. Once you have this plan (a legal document) it will be VERY HARD for any school employee to legally discriminate against your child or your choices as the parent. He does not need an Individualized Education Plan (IEP) or anything like that--the school just needs to recognize his disability and try to meet his needs.

On the flip side, I hope that hearing what the principal *may* be going through might allow you to have less anger towards her, so you can spend your energy on all the other important things you have going. First, schools are funded by the number of students in attendance by a certain time each day. Even if a child is present but arrives late, if it is after the mandated reporting time, the school loses out on that money for that child for that day. This is very stressful for the school's budgeting purposes. Second, schools are very dangerous places to work now, as a principal is often removed mid-year if test scores aren't where they are expected to be by a certain time. The principal may be panicking because she is worried about test scores and the safety of her own job. She may be feeling that if your son continues to miss school he will miss out on important info that will cause his learning, grades, and test scores to decline. Third, if the last principal left there may be dysfunction in the system and the current principal may be experiencing pressure from above to run the school a certain way. Still, even if these issues are the reason for your principal's behavior, she has no right to take her stress out on you and really must act with more compassion.

Last, you might want to look into what "Blended Learning" options are available in your district. This simply means that some learning takes place in person and some is on the computer. Depending on his age, your son might be able to take some district coursework online (in a school lab at lunch, or after school, or from home) and then report to school in person for other classes later in the day when his body is ready to be there.

In the meantime, I hope Cyber School works out for you both. If he misses being around other kids, take him back to the brick-and-mortar. And let the principal know that you WILL go to court. With a 504 Plan in your hand, you will win that case. BEST of luck to you, and prayers being sent up that this stressful time gets better for your family quickly!!

Maui

*The worst principal I ever worked for was new in her role and was on a major power trip to establish her authority. A teacher had a seizure on the way to school and called in sick from the side of the freeway. The principal told her to come to work anyway now that the seizure was over. So, unfortunately, this callous behavior does happen at times and you should definitely report her.

Post Edited (mauihawaii) : 2/25/2015 7:49:07 AM (GMT-7)

Posted 2/25/2015 3:18 PM (GMT 0)
First of all, you should know that I'm a huge home schooling supporter. I home schooled my kids before it was accepted or cool (& my Mom, Aunt and many family members are school teachers - but that's part of why I did it!! I knew a lot of the issues).

My step daughter is now convinced (without me intervening) that it's best to home school her 3 children. Mainly because one has severe food allergies (peanuts being the worst, then dairy), but there are many other issues that contributed to her decision as well.

But, remember that you still have rights. Your child is sick, not faking it (it's pretty darned hard to fake a fever!!!). There was a thread not long ago about this with older children, but the information would still hold true, no matter what age the child is. So please read through this thread as I believe it may have some valuable information in it that can be of help to you:

www.healingwell.com/community/default.aspx?f=30&m=3328707

I wish you luck in this!!
Posted 2/25/2015 3:41 PM (GMT 0)
Oh Simela, so sorry you have to deal with this nonsense. As if it isn't hard enough to deal with this disease yourself and support your children who are also sick, that in of itself is a full time job with overtime!!

I second Maui's suggestion on finding a Dr who will support the 504 plan. Apologies for missing your history, but would an LLMD be able to advocate this? My daughter was just admitted to the plan for her congenital illness because she is struggling in certain areas.

Do you have a Montessori school nearby that would be an option? Not sure if they still have to abide by state rules & restrictions?

I wish I had more helpful info than this to offer....hugs to you mama :(
Posted 2/26/2015 10:56 PM (GMT 0)
**anchi and happyjo**

I am in PA. I don't know if my son could be considered disabled, since the dr expects him to go to school? So until I find out WHAT the best way to go about it is, or until I get a 504 letter from a new dr, a grievance may do more harm than good :(


**Girlie**

It seems a lot of parents are going through this. My son's supplies for the Cyber school came today. I always say something to whomever I meet now to get feedback. The Fedex guy told me he delivers a lot of packages like ours--a lot of people are opting for the online school when their kids get sick!

**Utah**

Yes, he really wants to go and I explained him that since he can't make it on time, we really have to do it on line for now :( I don't know why you even have to bother to get dr. excuses, if the school ignores the and you still have to go to court :(

**mauihawaii**

I thought schools are funded by property taxes? We do not leave in a poor neighborhood and they are getting plenty of money. I am not sure if it makes a difference to them when my son gets to school. Maybe is a matter of state by state issue? I leave in PA. Oh, and I am not angry with the principal. I am only baffled that she is so insensitive. She told me she goes to court 6 times per week! Maybe she likes to go or maybe she is making a career out of it?!

The principal is not really new--she has been the head principal, but now that the house principal left, she is in charge of my son's situation. I think she dealt with it very poorly. She thought I would bow to her or something. I think she expected me on Monday to email her and say that yes, I will send my son to school EVERY DAY and ON TIME. Instead, I wrote her the letter I will post at the end of the email. After I emailed the letter, I never heard back from her! I think is strange, do you think my letter was not worth responding to or in any way rude or offensive?

**Trav**

Yes, I know you are a fan of homeschooling, and under normal circumstances, I would consider it. But for now, until I get a letter from the doctor, I do not want to make too many waves, in case the school is starting something with me, not because they are right, but just to annoy me and to make my life difficult. I really think this principal wants all kids on time even if they are on their dead bed!

I sent her an email and never heard back from her! I will post it below. Was not my email worth answering?

I did look at the link and I've read all the comments. At his school, this would have to go through the counselor. She offered to help by putting my son in special needs with a girl that has 100 seizures per day. I declined. My son is an honor student, and I don't see how anyone can learn anything in that environment. I feel so bad for that little girl! 100 seizures a day :(

**lymie mom**:

The most difficult to deal with is the lack of compassion from both the school and the doctors. My son's condition I view it as a test from God for our faith and I can deal with it pretty well. I do not panic and I take everything as it comes with trust that everything comes our way is allowed by God, even though I can't understand why; I accept it.

****************************************************

Here was my last email to the principal--I sent it on MONDAY, FEBRUARY 23th . She did not respond, although I asked her to confirm my son's last day of school! Do you find anything at all wrong with what I wrote? Shouldn't have she responded to me? Thanks!

"Dear Mrs. XXXXXX,

We were contacted by Mrs. M from PA Cyber School this morning. She informed us that today will be xxxxxxx's last day of school at xxxxxx. My son was supposed to go for blood work today and we were going to pick him up early, but since he won't be returning to school, we can take him for blood work tomorrow morning.

He didn't feel well today and he vomited again this morning. He woke up with excruciating ear pain on Saturday at 1:30 AM. I gave him some Tylenol but the pain persisted through the night and he was up for most of the night because of pain. At 5AM he vomited and he had a fever along with severe pain in his left ear. We took him to the doctor on Saturday morning and he is back on antibiotics for an infection in his left ear(he was prescribed Cefdinir).

We feel it is best for xxxxxxx to withdraw from xxxxxxx, given his consistent health problems and his inability to make it to school on time, every day, because of them. If we had any doubts, what happened this weekend proved to us he simply can't make it on time, every single day. All I can do is document his condition by taking pictures and video clips. He has been laying on a heating pad with his ear to alleviate the pain the whole weekend. He could not do this if he had to be at school. If the ear infection would have started on a week day, he would have missed school again because on Sunday he slept the whole day, given that he was up almost the whole night on Saturday night, crying through the night, upset for not being able to return to sleep because of pain.

Thank you for being part of xxxxxxx's education. I appreciate what Dr. xxxxxx {this was the previous principal I mentioned here, he has a PHD, he is not a real MD doctor) and all of xxxxxx's teachers have done and I wish I did have a chance to thank Dr. xxxxxx in person, before he left the district. Until xxxxxx's doctors can figure out why he is constantly sick and in pain, it would be cruel of me to send him to school every day and have him struggle even more than he would if he would stay home, where I can do a little more to make him comfortable. For whatever reason, his immune system seems to be really ran down. He finished a course of antibiotics last month and now he started another.

Thank you very much and I apologize for the inconvenience this has caused you, Dr. xxxx, and all of xxxx's teachers. I hope the transition to the Cyber School will be smooth and if there are any problems, please let me know--in particular, please confirm that legally, today is XXXXXXX's last day of school at xxxxxxxxx.

Sincerely,
xxxxx
******************************************
Why didn't she respond to me? Any ideas? Does my message imply that she is cruel for wanting him to come to school while he is in pain? I didn't mean to imply that if it is somehow understood that way? I forwarded this to his teachers. They didn't respond either. Do YOU find this offensive in any way?
Thanks again for your wonderful support.

Post Edited (Simela1) : 2/26/2015 4:04:52 PM (GMT-7)

Posted 2/26/2015 11:11 PM (GMT 0)
Well, I can tell you that you were a LOT nicer than I would have been!! I'm a school teachers daughter, so I know some of the 'inner workings' of schools and didn't hesitate to use that information during the short time my kids did go to public school.

I would call to be sure she got it, if you can confirm she got the letter, and they are ignoring it, that too can be used to "build your case" for whatever happens next for you and your family with the school.

The schools also get public funding according to how many students they have in class each day - that's why you are being pushed for your kids to attend.

I wish you luck in dealing with this!!
Posted 2/26/2015 11:36 PM (GMT 0)
Without documentation, its not possible to claim an illness, or disability, without out actual clinical proof, such as a verifiable Lyme test. The neurologist already refused to give your son a diagnosis, cant you get it from a LLMD.
what was the medical condition you provided that they refused.
Posted 2/27/2015 12:05 AM (GMT 0)
Your letter was not rude at all...you were polite, respectful.

She probably didn't respond because she's realizing she has been an insensitive bleep, and it really becomes evident when anyone reads the letter.

She probably doesn't like the fact that you have it in writing now, not just verbal.


Good for you!
Posted 2/27/2015 4:10 AM (GMT 0)
Sorry to hear you are going through this, you and your son dont need the stress from the school.

I wouldn't hesitate to pull him out of school and home school. I have friends and family who do home schooling and it's probably a better option, especially when one is sick like your son. There are home school groups, not sure about PA, where they get together as a group and do things together since he likes school.

Sorry that you have to deal with this.
Posted 2/27/2015 10:22 AM (GMT 0)
Well, I don't believe the diagnoses of the neuro, I think they are symptoms of Lyme or co-infections, as his problems started AFTER he got the Bull's eye rash. But the medical problems from his records that are summarized in the form I had them are:

*1. Anxiety about health 01/01/2015

*2. Conversion disorder with mixed symptoms 01/01/2015

*3. Benign rolandic epilepsy 12/6/2014--he had 6 grand mal seizures from sept 2014-december 2014, prior to this diagnoses and 2 abnormal EEGs; We were at 3 ERs during this time period for this and hospitalized for 4 days

*4. Allergic sinusitis 01/01/2015

*5. Pain in limb 01/01/2015

*6. Seizure-like activity 12/06/2014--they look like seizures but they are not

*7. 11/13/2014 Acquired rigid flat foot, left ankle--problems started summer 2014; he started PT for his left ankle this month he will get a customized brace that is in making right now and should be ready soon

-------------------------------------

I will look into homeschooling if a lot of computer time is required for the cyber school. I already told them that we'll see how it goes, but my son won't stay hooked up to a computer for 8 hours per day

The neuro didn't even tell us about the conversion disorder diagnoses--he just decided to add it on, AFTER we left! I found it on line through the hospital records and I didn't even know what it meant!

I provided documentation for this, but the principal said that there is no plan of care to excuse him from getting to school on time!

Also, A summary of his recommendation for care is provided in one of the documents from our visit that took place with the neurologist together with the child psychologist--our appointment was over 2 hours:

"1. Continue to remain calm during spells and try to provide attention and praise only when the spell ends.
2. Encourage Daniel to attend school and other activities even when he complains of pain and fatigue. Consider providing small rewards for his ability to push through pain.
3. Remind Daniel to practice the relaxation exercises 3 times/day."

So, I don't know, but I think all this shows there are problems? I do think that the neuro would have gave me a 504 letter eventually, but we only saw him once, beside the 4 day hospital stay in December 2014. I think he just wanted to see how it goes and take it from there at the next visit. I did fax him a letter asking for the 504 because I thought it may come to this, but he didn't respond.

ALL this I did in writing so I have proof. I did it this way to cover myself because I had a feeling it will come to this--I met a woman at the neuro office that told me she had to go to court because her daughter had 30 absences due to asthma attacks!

I repeatedly asked the principal why I wasn't contacted about the documents either verbally or in writing and she said that the previous principal gave me the "benefit of the doubt". Right there I have her admit THAT I WAS NEVER CONTACTED to obtain these documents and then she was not happy with what I could get to her within 3 business days, given that all other more detailed records, were never requested from the hospital by me, so she asked me to get something in 3 days that I did not have, nor could I get them so quickly!

I explained that in order to get all the records I would have to supply a request in writing, pay a fee, and then wait for them to be copied and mailed to me, which takes about 2 weeks. NOPE! She was not going to wait! I really think the whole thing is absurd! But I have it in writing that without any heads up, she demanded records that I did not have and she didn't even offer me enough time to get them!

So, is it all about money? That's why she wanted my son there on time, no matter what? Why would a principal make demands no one can meet in that time frame? I played her game PRECISELY for her to fall in, and I think she did. And it is all in writing! I have a high mental tolerance for stress. Maybe that's why she is not responding to my last email? Does she realize she lost much more money this way and she is upset? Does she even realize she really stepped her boundaries and she is backing off? I don't know, but I find her attitude immature, bizarre, unprofessional--not to even mention her lack of compassion. You tell her your son is having excruciating ear pain, and she says nothing!

After my last letter, I expected her to say, oh, sorry your son is so sick, something! Nope! Nothing! And I checked my spam just in case. Nothing! I am saving all the emails, just in case I need them.

Thank you very much for your opinions, they are much appreciated!

Post Edited (Simela1) : 2/28/2015 10:34:43 PM (GMT-7)

Posted 2/27/2015 3:06 PM (GMT 0)
Wait a minute - "push through pain" - WTH???? Why in the world would you tell a child to "push through the pain"??? I was told that and look were it got me!!! 40 yrs without any treatment.

You are dealing with ignorant fools. They want to say they know what your son is dealing with and tell you that he must attend school in the manner in which they are accustomed - not what's best for your son!

Do you happen to have a picture of his Bull's eye rash? Was it reported to any doctor so that it's in his medical record? The bulls eye rash alone is diagnostic of Lyme, so you only have to find someone that understands that much and get them to intervene.

I am totally outraged by your son being treated in this manner by school officials - what the bleeeeeep do they know about medical issues anyway?
Grrrrrrrr! Sorry. venting over for now.
Posted 2/27/2015 5:10 PM (GMT 0)
conversion disorder? Isn't that a psychological condition when people are so stressed/worried about their health that they get symptoms?
Well maybe your son is worried BECAUSE he has some freaky symptoms....not the other way around.

EVEN if he had conversion disorder...it's definitely not his fault....and the way he's being treated at school is not helping matters.

Geez - who wouldn't have anxiety about their health????

I agree - Home school.
Posted 2/27/2015 10:04 PM (GMT 0)
Yeah, Trav, tell a child to "push through the pain" and not even offer pain meds--not that I would want to use any strong pain meds for him! Yes, 40 years is a long time! You have a lot of endurance. A lot of people would have ended in a mental institution, I think!

Today he started his on line school. It is not too bad! It is just time consuming like the regular public school.

Do you happen to have a picture of his Bull's eye rash?
Yes, I do, plus his medical record that he was treated for Lyme with one month of doxy.

I don't know how it will go with my LLMD, since I just got a lyme and co-infection test back today and everything is negative! My LLMD only treats if you get a + test. But MAYBE I will give it a try. IF he doesn't treat him, I give up, I am not going to look for anyone else. That's it! I will do some herbs and that's it! I've had enough!

I see time and time again even here how people are not diagnosed until much later with co-infections and sometimes, like in rowingmom's case, she is the one that discovered the co-infections! And then, like in your case, your test was negative for a full year! And then that Olive guy, he treated for lyme and didn't even have it! So maybe it is not lyme! maybe it is a rare co-infection or a strain that they will never figure out! We've been in Europe and he could have got something from there, too.

I am tired! I am physically and mentally tired and I just can't go from dr to dr anymore! Thanks Trav! This negative test today really got to me! It was my last hope that my LLMD would treat him! Now that the test is negative, the LLMD will send his blood to igenex and if that comes negative, then what? I'm done! Maybe I will go to John Hopkins. THey seem a little brighter about lyme there!
***************************************
HappyJo:

Thanks, that is a great idea :)

****************************************
Girlie:

Yes, conversion disorder is sort of like tics, which he never had before! But the seizure like activity--also called psychogenic seizures, are caused by traumatic events or pain! He is complaining of pain EVERY DAY since sept 2014. Some days much worse than others! He also started to fall--his legs get to weak and he just drops to the ground. He didn't have any traumatic eventss--we talked about this. He is just scared, he is 10!
Same with the real seizures--one of the main causes is infection! And the real seizures (the grand mals that were happening exactly 2 weeks apart--coincidence or maybe bartonella?) stopped since he started abx, so I do believe an infection(s?) is the cause of all of this.

BUT: He is sensitive to noise and his ear is still hurting so I think it is great that he can stay at home! He doesn't have to deal with the noise from school.

**********************

Post Edited By Moderator (Traveler) : 2/27/2015 3:33:25 PM (GMT-7)

Posted 2/27/2015 10:57 PM (GMT 0)
I edited your post as the majority of it was in bold type which can be hard on members eyes. I hope that I left it in a manner that is still pleasing to you!!!

Remember that the Bulls eye rash alone is diagnostic of Lyme disease - so push that fact with everyone!!

I don't blame you a bit, Simela, you've been through a lot yourself!! I only offered so you know that you have my help. I will - of course - support you in whatever treatments you decide to use with your kids.

Please remember to be kind to yourself too. We are here to support you in the best ways we can!!
Posted 2/27/2015 11:18 PM (GMT 0)
Thanks, Trav!

I got stuck with the bold when I copied your question and couldn't get rid of it--sorry!

I HOPE that the rash would be enough, but the receptionist said no. Also, Hopkins came with an article stated that bulls' eye rashes may be due to spider bites and not a Lyme infection. In contrast, a person infected with Lyme infection may present a different rash than Bull's eye rash--according to John Hopkins. 

They are lyme friendlier, but not quite all the way. So, I really DON'T know if the LLMD is going to go for the rash in the absence of a + test and I've played this waiting game for almost 6 months!

When you go from dr to dr because you don't think of lyme or you don't know about it, is one thing! But when you got the rash and you know it may still be in you, it is quite annoying and I guess this last test just pushed me over the edge. Both kids were negative for lyme and co-infections!

I know you are trying to help and I thank you so much:)  I am just really sick to my stomach right now to go into another dr office to get more run around!  Really, really tired and tired of this!

Post Edited (Simela1) : 2/27/2015 4:22:29 PM (GMT-7)

Posted 2/28/2015 4:54 PM (GMT 0)
Don't worry about the post - I just hoped that I had it close to what you had intended!!

I don't blame you a bit for not wanting to mess around with any more doctors - that's why I refused to have IV abx this time too. More doctors, more testing, more hassles - and why when I had a really good herbal protocol that I knows works for me?? Surprised my doc that I chose herbs, and that I actually healed with them!! LOL! Yet another doc that has actually learned something!!! smilewinkgrin

Know that we are here to help in whatever ways we can!!

(((((((HUGS)))))))
Posted 2/28/2015 8:01 PM (GMT 0)

Girlie said...
conversion disorder? Isn't that a psychological condition when people are so stressed/worried about their health that they get symptoms?
Well maybe your son is worried BECAUSE he has some freaky symptoms....not the other way around.

EVEN if he had conversion disorder...it's definitely not his fault....and the way he's being treated at school is not helping matters.

Geez - who wouldn't have anxiety about their health????

I agree - Home school.


yes that what it is, sounds like another word for hypochondria as well, when did her son get the so-called bull eyes rash? tick bites, with lyme doesnt need to cause bull eyes rash, it look like other rashes as well.
Posted 3/1/2015 5:48 AM (GMT 0)
Trav:

What abx were you on the first time? Did you do IV abx or oral only? And when you say "this time" I assume you mean the second infection? Were you tested this second time? Was your case so severe that you needed IV abx, according to your doctor?I got all of the items in your herbal protocol except one.

But your herbal protocol is just for Lyme, right? Did you use herbals the first time too? I think you said you did, but what protocol did you use for the co-infections, if the herbal protocol you used didn't cover co-infections?

My concern is, after thinking this over and over, is that my older children got very sick when we went to Europe and maybe they are infected with a different Lyme strain than it is tested here.

It may take lots and lots of testing to figure this out, and we know how reliable the testing is, so what if I never find out anyway? OR what if there is some other bacterial infection similar to lyme and co?

There is no doubt in my mind that a bacterial infection is indeed involved, because my son's seizures stopped with antibiotics. But even ONE abx for one month messed up his gut severely. So how would he be able to tolerate a combo of abx? And what about what they leave behind from the added ingredients?

I don't know, I am re-thinking everything now! I remember your test wasn't positive for 1 year. Were you negative for lyme and all co-infections and then retested after 1 year of treatment and all tests came positive? Which Lab did you use?

Thanks, I hope there are not too many questions :)
Posted 3/1/2015 5:53 AM (GMT 0)
zasz:
My son got the classic Bulls' eye rash in August 2013. Strangelly enough, he also so a pulmonologist that day and he was diagnosed with allergies to pollen, dust, cat hair, conjuctivities, chronic sinus infection, renithis.

ALL on the same day! So, how can someone develop all this problems at the same time, and then continue to develp new problems, if he was perfectly heathy before, for the first 9 years of his life?
Posted 3/1/2015 4:35 PM (GMT 0)
Simela, don't let my personal story of what I went through freak you out. I'm an unusual case.

I was first seen by a LLMD - and I can mention his name as he is deceased now - Dr. Edwin Masters (of "Masters Disease"). He was a very knowledgeable Lyme researcher and doctor. After evaluating me for over 2.5 hours on my first appt, he told me that I had every tick-infection, based on the number of symptoms I had and the severity of them (I'll never forget, as it was the worst day of my life), and started me on oral Minocycline right away. I stayed only on Mino for a full year - I don't know why though. I was really too sick to think clearly enough to be able to understand the why's.

We didn't bother to do any testing at that point. Dr. M told me that we would test later, once the antibody response was provoked enough. I only lasted 12 months on the oral abx, as I kept getting sicker and sicker, until I literally could go on no further. Dr. M begged me to stick with him, but I knew that my body could literally take no more.

BUT - and this is key - neither of us knew how important detoxing and even taking probiotics was!!!! This was back in 2007 and while there was some talk about probiotics, it was before anyone was even talking about detoxing - except one brave soul on our forum - Deejavu.

And yes, when I say this time, I mean this last year when I started treatments again. My current non-LLMD wanted me to go to "this guy" (a holistic doc nearby) that does IV abx for Lyme cases - but she didn't know where he got his training or knowledge, so I chose to not risk an unknown and just went straight for the herbs that worked so well for me last time.....and crossed my fingers, toes and everything else I could hoping that I wasn't being foolish in thinking I could do this on my own with no help at all.

The testing that I did have done was through Labcorp, by a doc that agreed to take me as a patient after begging (literally) as I was without a doc after I stopped seeing Dr. Masters. I turned up CDC positive to not only Lyme, but to Rocky Mountain Spotted Fever (which I had when I was 7, but wasn't treated long enough, so it went chronic as well).

So to be clear, let me answer your questions again, but in short answers.

What abx were you on the first time? Minocycline

Did you do IV abx or oral only? Oral only

And when you say "this time" I assume you mean the second infection? Yes, the second time I was infected - just last year.

Were you tested this second time? No.

Was your case so severe that you needed IV abx, according to your doctor? Yes. My symptoms were "worse than she had seen before"- but this was a non-LLMD.

But your herbal protocol is just for Lyme, right? Yes.

Did you use herbals the first time too? Yes.

I think you said you did, but what protocol did you use for the co-infections, if the herbal protocol you used didn't cover co-infections? I used the Chronic Tonic for Lyme for 12 months, and added in Houttuynia for Bartonella the last 9 months of Lyme treatment.
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Posted 3/1/2015 4:42 PM (GMT 0)
For Babesia, it was very difficult for me to figure out what worked, and honestly, I still don't know, but the symptoms are gone!! This is what I posted in the link that is at the bottom of my posts:

"From what I can make out, the main herb used to treat my Babesia was Artemesia.
Zang agrees with this:
www.lymehope.com/DrZhangHandout2.pdf ,

and although Buhner used to, he's recently decided that Sida Cuta works better for more people, although Buhner does admit that Artemesia will work for some people:
buhnerhealinglyme.com/the-protocols/#BABS

For those that are interested, I also used ear tacks a lot during this period and they were applied most often to the "Shen men" point, Autonomic point, and Zero point. And I actually did feel better when using these as I was going through treatment.

My doc had me use a combination of herbs that she mixed to increase my micro-circulation called:
Dang Gui Si Ni San (no, not a misspelling, just hard to find info on)

And a variety of herbs for treating symptoms.

Edited to add - I also used green tea during my treatment of Babesia.
www.ncbi.nlm.nih.gov/pubmed/20025823
-------------------------------------------------------------------------

As for your son's case - was he on high dose probiotics when you had him on the abx? You can mix and match probiotic strains too. During my last treatment, it took me a while to convince my doc that I really needed to be on not just probiotics, but kefir too, so I had a bit of candida set in. With using kefir (the store bought stuff this time!!) and adding in only acidophilus, I was able to get control of the yeast quickly and eliminate it. I'm still drinking the kefir, as I have a lot of intestinal issues that the kefir is helping with - besides, I've gotten used to it as a main part of breakfast now!! LOL!

As for your older children, you can use herbal protocols on them as they are not as "specific" for a single strain of bacteria like pharma abx are, and they have constituents also contained in the herbs to help the body deal with the effects of it's use, so often they are seen as the "more gentle" treatment.

And above all, remember that the choices are yours and yours alone to make for your kids. Do what you feel is right in your gut. And let me know if you have any more questions about what I did or if there is something you believe I can be of help with.
Posted 3/3/2015 6:55 AM (GMT 0)
Wow, thanks for the very detailed info, T!

Nothing freaks me out, not even Halloween stuff LOL--I just see every day people here reacting badly to abx and I am concerned, although I didn't have a bad reaction to them when I was on treatment. The residue that they leave behind also requires massive detox measures that may or may not remove the added ingredients.

See, that's exactly what I mean: mino didn't give me a herx and I was taking it in addition to other abx! And I didn't detox, either. You did take it for 12 months, though. So that's where I am having a problem in making a decision: herbs VS abx: Do the herbs work to clear up the rest, or would have they worked without the abx?


Yup, sometimes I feel that way to, "hopeful thinking" that I can do it myself with hebs only is no foolish thinking LOL Even the LLMDs are trying combos and what works for some patients doesn't for others. Same with herbs. So maybe is not foolish--as long as there are no bad interactions.

Did you get the rash for Rocky Mountain Spotted Fever when you were 7? That must have been horrid :( Do you think that is when you were infected with all Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV?

Ok, so all in all, you used mino for 1 year and herbs for 1 year. That is really impressive considering you were infected for 40 years! It's amazing!

I got the Houttuynia and Artemesia because sida acuta is just too scary for me right now LOL.

Never heard about the ear tacks. Did you have a dr. doing this? I see they sell some little round thingies on Amazon. DId you do it yourself or you had a doc doing this?

Dang Gui Si Ni San
http://www.eastearthtrade.com/Dang-Gui-Si-Ni-San.aspx
**contains angelica and jujuba fruit--that's the only think I recognize. Might contain cinnamon or a cousin of it? Dr. K uses Angelica and cinnamon, too. I think some people use jujuba oil to treat Lyme, too.

Ok, so you used other things besides your lyme mix. IS it because you had problems with your blood, cold hands and feet, circulation, or was it for additional support?

Great link on the green tea**Thanks**! I have been reading about green tea and it seems there is a top of the line super expensive one, and one that is much cheaper. Could you please tell me which one did you get (name brand or link)? I need to play the lottery if I have to use the super expensive one LOL

Please take your time in responding when you can, I am just trying to find out what my options are with herbals. You and rowingmom used them but used them after abx, so I am trying to figure out if they really work without starting with the abx. You would say they do, based on your second trial when you got re-infected? OR: given that the second time you may have dealt just with lyme, the herbs were sufficient, but the first time, given that you were dealing with so many co-infections, maybe you would have needed to start with abx?

Hm! really tough! But Dr. K uses herbs in even smaller kids than mine, so maybe they are safer than abx. all around, ah? Thanks so much! This is really helpful!

Post Edited (Simela1) : 3/3/2015 12:03:28 AM (GMT-7)

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