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» LymeNet Flash » Questions and Discussion » General Support » Frustrated!

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Author Topic: Frustrated!
Holly Beth
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Went to hospital to ask one of my friends about my son and saw a pediatrician walk by and I knew who he was because I used to work at this hospital.

I told him my sons symptoms and I mentioned that I was concerned about possibly transferring Lyme in utero. He said "who said you have chronic Lyme disease because there is no such thing."

I said that I saw someone out of town. He went off on how the ILADS is a group that tries to take advantage of people by treating them for yrs on abx and taking our money.

He said that I would feel better and just need a few weeks of abx and if i dont feel better I have something else going on. I told this idiot my symptoms of shooting pains,headache,chest pains,blurry vision etc.
He said Lyme does not cause all those symptoms. He said it doesnt even effect you vision. I said that I been on abx for 6 mo. and still have symptoms but they improved.

He rolled his eyes and laughed at me and said I read too much stuff on internet.

He told me I need to see a real dr, not the one I'm seeing and that I need to look up info on the website "up to date" or "pubmed".

He must be from an IDSA group or something???or just ignorant??

He also said my son has just a"tick" and it's nothing.

That is not normal. It started a few days ago with my son.He started drifting off and his face twitches and he comes out of it but this repeats throughout the day.

He also was getting random fevers every week all winter. I think he has Lyme but I want further testing to rule out everything else.

I'm just angry and frustrated! He said that I'm just hurting myself. Whatever!!!I feel that no one believes me and they all laugh at me.

Posts: 84 | From way over the rainbow | Registered: Oct 2012  |  IP: Logged | Report this post to a Moderator
Keebler
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Friends should not let friends talk to ignorant doctors.

Also know that even though you used to work at that hospital and you have friends there, they may not be "on your side" with this. Be cautious.

I'm sorry for your experience but it's vital - absolutely vital - that you do not engage such doctors at this time. You could have your custody threatened. It has happened.

ONLY talk to doctors who are lyme literate about your children. Do not talk to teachers, other parents (outside of a lyme support group), or even someone when out to lunch.

You can talk to teachers about symptoms and needs and accommodations but NOT about lyme. Not now.

Sadly, your questions must be addressed out of ear shot of those who are ignorant and who could make a lot of trouble for your and your children.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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The Lyme Controversy:

http://www.youtube.com/watch?v=PVPRWiukp_M

http://www.youtube.com/watch?v=8yk0C-uX9cU&feature=related


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031097;p=0

Topic: NPR (Nebraska) Radio Interview

See listener comments, too. They show us how very wrong of the ID (Infectious Disease) doctor who was interviewed. Very typical, though, and why ID doctors are not the ones who help those with lyme.

Neurologists & rheumatolgists also follow the same umbrella group (IDSA) that ignores lyme and discounts those who have it.

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

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.

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

Search past threads for:

Munchausen

and see this article about lyme & parents loosing custody or having to fight for it after allegations of Munchausen:


http://www.psychologytoday.com/articles/200708/munchausen-unusual-suspects

Munchausen: Unusual Suspects

Call them the Munchausen mothers. A growing number of women stand accused of deliberately sickening their children for attention from doctors. In an era of patient advocacy and hard-charging moms, there's no end in sight to this hotly contested diagnosis.

By Pamela Weintraub, published on September 01, 2007 - last reviewed on November 10, 2010
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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What an idiot!! Where the heck is "ironwood?" Makes me glad I don't live there!

PS.. He's just ignorant.. one of thousands who think the same way.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Holly Beth
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It is a small town in MI that will not help my child or I with this situation.

That dr actually made me think for a second I could have another crazy disease that's killing me and I'm ignoring it. But then I came back to reality.

I talked to my LLMD and he is sending me an Igenex kit to test my son. My LLMD truly believes my son has Lyme.

My son has had issues with random fevers,lazy eye,now this ever since he was born. I know something is wrong that these dr's are ignoring.

If these dr's keep ignoring me, I'm going to have to put all my trust in my LLMD who is 3 1/2 hrs away.He is the only one listening and willing to help.

My son has an appt monday,we will see what happens. I feel so alone right now. I feel that my hands are tied and I cant help my son like I want to.

This is awful. I feel like i'm my own dr in this area.

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Holly Beth
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Do these dr's really think this stuff or are they covering up for something?
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Lymetoo
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Most of them believe it. They are brainwashed to believe only the IDSA.

The top dogs in the IDSA KNOW the score and they are covering their butts.

--and yes, do be careful what you post here about your son--

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Holly Beth,

Is this your real name? If so, that plus the identifying factors posted could jeopardize your privacy.

If so, at least change your location. It's not so easy to change a posting name but first thing is if you are using your real name. If not, I would still drop your location from your posts.

You can go into your profile and do that.
-

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Robin123
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Terribly tragic that this is what pediatricians, etc, think. Many of us heard that many ID docs came up to an LLMD after a debate and told the LLMD that they privately agreed with him but were not allowed to say so publicly.

If they're not allowed to say anything or know anything, then it may be up to us to educate the public.

Are you aware that the month of May is May Lyme Disease Awareness month, nationally and globally? That means that we can get alerts into papers, post notices on public bulletin boards, etc.

For public postings, I suggest something like "Plague Alert!! Lyme disease and co-infections are spreading - learn about them and what to do!" Then list helpful sites and links.

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OtterJ
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To add to the discussion, I did know of a woman with Munchausen by proxy syndrome and it had nothing to do with lyme, but all of your advice Keebler is spot on. Holly, go with your gut instinct. Sometimes that is the best. If you live in an area that has ticks, your son could be affected, too. Your llmd knows this and would like to rule this out as a cause for your son's symptoms. As always, be cautious. I would talk to your best friend who lives nearby because it is likely they have been bitten as well. I wouldn't mention the "L" word to others.
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Holly Beth
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thanks everyone. I'm secured but it doesn't hurt to be extra secure..This is scary. I feel alonein this matter.

There is no support groups here or anything.It's bad. Now I have to worry about my son ad his well being with no one on my side.

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Lymetoo
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Have you tried these?

http://www.lymenet.org/SupportGroups/UnitedStates/Michigan/

--------------------
--Lymetutu--
Opinions, not medical advice!

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droid1226
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Wouldn't mention the L word? I have a tough time following that logic. I do understand it
to a point because I've had it out with drs when they've tried to laugh at me. I've also been dropped by drs for constantly bringing it up.

But that's not the Dr. you want treating your son so who cares what he thinks.

I can see where people would believe that dr if he's going around saying that to others. That's the equivalent of finding cancer in a patient and not telling them.

Holly, you should look for a private practice dr. One who's not restrained and trained by big hospital thinking. Even if he's not lyme literate, he may be open to treat based on evidence and science, not institutionalization.

Older drs who are out in the "sticks" so to speak seem to be a little more open minded with less to lose.

I know of an older dr who practices on his own and treats bartonella and lyme long term. He's in western Ohio. Not sure how far you are from the border. You can PM me.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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Holly Beth
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thanks for the info Lymetoo. Droid-thanks I feel in my heart my son has Lyme. These symptoms lessened today but they come and go.

I'm scared to treat him with abx because he is so little.These dr's say i'm hurting myself by taking abx but I see people takethem for 5 yrs and they are ok.!!??

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Lymetoo
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You're right, droid. My GP is on his own and it makes all the difference in the world.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Carol in PA
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quote:
Originally posted by Holly Beth:

He also said my son has just a "tick" and it's nothing.

It started a few days ago with my son.
He started drifting off and his face twitches and he comes out of it but this repeats throughout the day.


I think the doctor was saying that your son has a tic not a "tick."

A tic is a repetetive muscle twitch or a motion, like twisting your head, shrugging your shoulders, or clearing your throat.

Does your son have poor handwriting?
This is controlled by the same area of the brain that controls the tic, so it may be related.

The "drifting off" makes me think it may be some sort of seizure activity, like absence seizures.


In the doctor's defense, they really do think that a tic is "nothing," mostly because it is common, not life threatening, and they can't do anything for it.


However, a tic is a symptom of low magnesium.
And low magnesium is (or can be) caused by Lyme.


YOU can do something to help your son.
He needs to get more magnesium in his diet.
This mother figured out how to help her son, who had tics.

Facial and Eye Tics in Children:
The Links to Magnesium Deficiency
http://www.ctds.info/tics.html

Look around on the site, at both parts of the site map.
Lots of good information.


Here is a children's vitamin with magnesium:
Natural Vitality, Kids Natural Calm Multi, Fruity Splash Flavor, 30 fl oz
http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Kids-Natural-Calm-Multi-Fruity-Splash-Flavor-30-fl-oz-887-ml/22855

Foods high in magnesium include:
Almonds, almond butter
Dark chocolate
Beans, kidney beans, black beans, baked beans, bean soup, rice and beans, bean burritoes


.
By the way, low magnesium can cause seizures and lots of other symptoms.

The Importance of Magnesium to Human Nutrition
http://www.mbschachter.com/importance_of_magnesium_to_human.htm

I think you would be helped by supplementing magnesium, as it helps many Lyme symptoms.

Posts: 6945 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
droid1226
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This is from The Lyme Disease Solution by Dr. S. I'm just posting this here because I can't pm you pictures. You said 39 IND with a 41 on your IGM, I believe.

 -

[ 04-08-2013, 02:04 AM: Message edited by: droid1226 ]

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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surprise
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Honestly, you need to calm down. If you are appearing freaked out and unstable,

mentioning chronic Lyme disease being passed to your baby
(and it is a baby you are talking about here)

they will not listen to you, and will mark regrettable remarks in your sons chart, and not take what you are saying seriously.

First of all, you don't have to put the child/ baby on antibiotics until you get the Igenix testing back- which you haven't done yet, correct?

The current issue is this baby having very possible seizures. You, as the Mother, need to know whether this is happening for sure or not,

as it can be extremely serious, you don't want a grand mal seizure, and all this can be prevented if you have correct information.

So, you want an EEG test run ASAP. Period. Because you have some very real indications the baby's episodes may well be a seizure.

If they aren't, great. Then you can begin to look into possible facial tics, etc.

Deal with one thing at a time. You must appear calm, educated and in control to these Dr.s

If you have health insurance, there is no reason why you cannot get an EEG test performed, and go from there.

As for treating Lyme and co. in yourself, that is a separate issue than what you are trying to accomplish with your baby,

and should be kept separate when dealing with medical people regarding your son's care.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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poppy
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Even if it is lyme causing what appear to be seizures, it would be good to have that EEG result for any doctor who might later treat for lyme in the child. You don't have to explain what you think is the cause, just describe the symptom to whoever is ordering the EEG. And get a copy of the result.

Surprise in the post above has given you good advice.

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Holly Beth
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Ya, my LLMD told me not to mention Lyme to the pediatrician my son is seeing today. The other Dr I was talking bout did not see my son.

He just happened to be at hospital when I bumped into him. He does not even know my son.Thought I could get a little advice well I learned the hard way I guess.

Today my son will see his real Dr. I am not mentioning Lyme. I'm just hoping he wont ignore it and will order an EEG for him.

Also I panic a lot inside but I do not show it as much on outside or in public, so when I see the Dr today he wont think I'm crazy, just concerned.

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Keebler
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-
Food additives (including sweeteners) can cause tics and seizures, too. While likely you search for additive-free foods, something might have slipped in:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors
-

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Ellen101
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As far as facial tics go, a number of yrs ago one f my kids suddenly developed a facial tic. I brought him to the pediatrician and he told me sometimes undetected strep can present as facial tics. Sure enough the strep test was positive. He was put on a lengthy curse of antibiotics and had an ekg done to be sure no damage was done to his heart.

Might want to ask for a strep test.

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Holly Beth
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Seen Dr yest. He said something definately wrong. He said he is either has acid reflux or some kind of seizure.

They put him on Zantac and making appt for pediatric neurology.

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TF
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Praying for you! Hoping it will be something minor, and that you get a quick appointment with a good neuro for him.
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Holly Beth
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Thank you TF! I really appreciate everyone's support!
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Carol in PA
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Holly Beth, have you had a chance to look at the information I offered.

This is a simple and non-invasive way to improve your son's health.

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Lymetoo
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Good to hear that the Dr is on it!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Holly Beth
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Carol in pa-yes I did, thank you very much.In addition to all this I am going to offer him more magnesium rich foods.

I noticed he gets some mg in his formula but he probably needs more.

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Ellen101
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Do you ask about a strep test?
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Carol in PA
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The manufacturers can't put very much magnesium in the multivitamins, because it's so bulky.

If they put enough mag in the vitamin tablet, it would be too large to swallow, so they just leave it out.


I suggested this liquid multivitamin because it does offer a significant amount of magnesium.

Natural Vitality, Kids Natural Calm Multi, Fruity Splash Flavor, 30 fl oz
http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Kids-Natural-Calm-Multi-Fruity-Splash-Flavor-30-fl-oz-887-ml/22855

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