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» LymeNet Flash » Questions and Discussion » General Support » Hospital FEUD and DRs disregard IGENX (Page 2)

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Author Topic: Hospital FEUD and DRs disregard IGENX
Carol in PA
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quote:
Originally posted by JD112:
Will this lotion replenish the magnesium that you are talking about Carol in PA?

Does the neuropathy go away in time and if so is it one of the last things to leave? Thank you for your advice and concern.


Magnesium oil/lotion should help, but it may take some time.

If she cannot take magnesium in pill form, perhaps she could take this:

Natural Vitality, Natural Calm, a powder that you mix with hot water.
http://www.iherb.com/Natural-Vitality-Natural-Calm-Organic-Sweet-Lemon-Flavor-8-oz-226-g/21268
(Also comes unflavored.)


Regarding Vitamin D, your sister is very likely to be low, unless she gets out in the sun regularly.
You need a good level of D so that the magnesium can be metabolized.
I'm taking 5000 units daily.


Peripheral neuropathy is nerve damage, and it's not going to heal unless you can supply the things the body is missing.
The Redd Remedies Nerve Shield mentioned earlier looks like it has the ingredients needed for nerve repair, all in one pill.
I've taken most of the ingredients separately.

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JD112
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Hello all, thank you again for all the information provided. I read all links and investigate.

Today again the hospital is ready to kick her out with discharge papers. Offering her LOW quality nursing home facilities for placement and "rehab". We wanted to get rehab for her extreme STIFFNESS because she wont bed the legs and is pain.

We are also scared to leave the hospital because we feel we wont be able to get a hold of the ID doctor since she does not have an office and floats around the hospital. She has a PICC line now and we don't know what to do.

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JD112
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We are desperate and calling Rehabs centers of quality care that state MS therapy just to go around the system but they will not grant her acceptance even with the Hospital discharger.

Her ID doctor recommended prior to picc we should go Upstate N.Y. but I don't understand if she is hinting to me to get her out of the hospital she is in now and send her upstate for further treatment. Im not sure if the message is supposed to be subliminal to get further treatment.

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bluelyme
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Is there any integrative docs there? Can you afford private hospice ..or a private nurse .? You can order intermuscular shots yourself if they insist on pulling the picc...she needs a lot of treatment to have a quality of life ...praying for you

--------------------
Blue

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Catgirl
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She really needs a good lyme doc. I think that is what the ID doc was hinting about. Hospitals and nursing home hands are tied. NY medical board is why. If you need a good lyme doc post in "Seeking a Dr".

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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JD112
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Hi. We are going to ask here shortly. How much does private hospice and private nurse run for to get an idea. I found Infectious disease doctors upstate that say they treat Lyme but her Lyme IGENX according to the hospital is negative. I posted in seeking a dr. but no response as of yet. :-(

They just want to push her out to nursing home and we want to try all these "new therapies" out there that no one will arrange.

They just keep telling us shes at a point of no return and that to pretty much give up and send her to a nursing home with Skilled therapy. Why do all these other therapies exist for if they cannot be used by people who need them?

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hopingandpraying
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Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/
www.empirestatelymediseaseassociation.org

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

You should also contact the Lyme Disease United Coalition at (800) 311-7518. They are very knowledgeable and might know of someone. Their website is: www.lduc.org

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hopingandpraying
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PM sent for upstate NY.

Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Here is a link for you to read about "Two Standards of Care":

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-standards-of-care-revisited.html

Your dear sister needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

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Catgirl
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Private home health care is about 15k a month. Not sure about private hospice.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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susank
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Have you posted somewhere here her Igenex results?
If not - could you?
IGG and IGM bands; "-" "+" and "IND"?

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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Lymetoo
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Catgirl .. that would be with 24 hr care, right?

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

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JD112
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OOPS! Posted into the wrong section. C+C+P. Will update again shortly with new info.


Original Doc on vacation. How convenient.


Update:

Waited for Doctor to come in today after having nurse station call in and she didn't return.


They are pushing us out the door with the excuse of "offering us rehab with a skilled nursing facility" and that we did not accept the offer so they can no longer help us, which I think is bologna .


How can they deny you treatment of choice and offer you something totally different. We are going to compile a list of medical devices that we might need to continue care at home.


But in the end, we still are going to need help long term. Private nurses at those prices will be impossible to afford. We will starve ourself out of food and monthly household bills.


Its to impossible to be an option. I did call her old LLMD and asked hinting if they might continue treatment if she gets better and the office said we will see.


So hopefully. I also contacted the Yahoo Group Lyme Disease to which I got leads but very expensive as well.


I was watching a YouTube Video online about a product called Moringa that I am going to research some more.

I hope it proves to be helpful.So far this looks good.


Moringa leaves are loaded with vitamins, minerals, essential amino acids, and more. One hundred grams of dry moringa leaf contains:4

9 times the protein of yogurt
10 times the vitamin A of carrots
15 times the potassium of bananas
17 times the calcium of milk
12 times the vitamin C of oranges
25 times the iron of spinach


https://www.youtube.com/watch?v=995GCOwsv4Y
Skip to 1:33 sec.This is where I learned about it. Glad I subscribed to his channel.


I called Coalition as well as the numbers on the lymenet support group by area. I will provide IGENX info tomorrow because my mother tried to


send them via text and they are of terrible quality to even decipher and she is asleep hopefully as we speak.


Pains are still persistent in the legs. She says it is the bone in her legs that hurt. As if it is the entire bone and not just the joint. Shards of glass is what she compares to it.


Anybody here live down south? Is Lyme tolerated any different anywhere else? They say MS is supposed to effect people differently in different climates. I wonder if it is true to Lyme?


Shes not on any drugs but she seems very much out of it continuing with the sleep and nightly pains. I appreciate all the positive words and encouragement. God Bless each and every one of you. Will keep you posted.

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Catgirl
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Yes, 24 hour care.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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JD112
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Sorry all. I forgot my password and had to reset.


My biggest concern right now is that prior to bringing her to the hospital her arms stiffed up like a board and am noticing no relief.


We are afraid to bend her because we are not sure where her elbow is?! She is sleeping alot. All day almost and skipping meals until dinner. BP low in my opinion.


She said last night her calves were hurting and it woke her from her sleep she jolted and quickly we put her leg massager on and repositioned her leg in fear of blood clots.


She said she got relief and it was weird. We still don't know what that was. She is still tight and just sleeps alot.


Is all this she is going through sound normal for the disease therapy? Her bowels are sluggish as well and taking something for that.


Tomorrow I prepare to disagree with the doctor. Wish us luck. We won't go without a fight.

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JD112
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In hospital. We submitted another Qio appeal. They are enraged with us. Waiting for doctor to come in. So far an hour waiting.
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Keebler
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-
See if you can find a patient advocacy office at the hospital. Most have them.
-

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Lymetoo
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It's so sad that she is so very ill.

God bless all of you.

[group hug]

Keep fighting!

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

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JD112
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Update :fired doctor and called a facility to find a doctor on board of therapies. Pray for us that she is sent to a facility for the extreme tightness and spasticity.
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TF
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I am praying!
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JD112
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I am home now. I will have to go back tomorrow because officially she cannot be fired until I have a replacement.


I was having a hard time finding someone quick and some drs denied and I'm limited with what I can choose due to "hospital rights"
regardless that our insurance will pay.


What a big game. We did another appeal and some reports to patient relations towards the pt team because they were not doing their job ordered in the script.


No pt at all. Let's hope qio agrees with us and feels she is not ready to be released.


If that's the case and I'm not mistaken on my part I have some names to report to medical conduct.


Their main job is to push people out the door heavily sedated.


I am trying to get a lawyer. We will see who will listen and isn't paid off by the big bad hospital.


Her condition:

Was awake with me most of the morning which I believe is because we requested not to give her flexerel in the day anymore.


Voice is weak still. Out of breath-ish. BP Low. 96/64 and about 86 bpm.


Yesterday for the first time ever and not happened again it was 112/64. But since has not happened again. It was random.


She gets these random out of no where pains and cries and says help me! I ask , what is it?! She says Pain in my leg!!!!


I say is it grabbing? And she states yes and that it feels like shards of glass.


I'm not sure if it's yet to early to tell improvement, her thought process to me seems a bit more fast but nothing dramatic


and isn't much to grab onto yet as her body is still twisted and locked together in the elbow and knees.


When I say locked I mean you CANNOT BEND. There is no way. She will scream in pain if we try to relax her body. We can't even try her body just won't maneuver.


I don't know what this is or what's going on but I hope it goes. Remember this is the reason we brought her in. We are scared.


She is stuck 24/7 in this position. Any thoughts on why this could be? And is there any coming back from this?

I tell her I talk to other Lyme sufferers online and your responses and it comforts her.Thank you for your prayers.

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Lymetoo
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Did they ever give her any magnesium? Not saying it's a cure all, but without it and with them giving her so many meds, the mag gets depleted.

End result is muscle spasms and pain.

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

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Catgirl
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I would rub that lotion on her calves.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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JD112
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Yes. I did ask today and they said Dr would have to order. So no mag as of yet except nature's calm. Going to get mag tabs either way. This hospital is garbage. Lotion will do.

Was not able to speak to her at time.

I have a question upon research. This looks like something she's gone through.


It is called CMT. Chariot Marie tooth disease. Have you ever heard of it and is it part of Lyme.


Her feet did this a few months ago and now it's the arms. She drove her nails into her palms and her fingers looked broken. We have to pry them open.


It is scary. Now same issue but in elbows and knees as well.

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Lymetoo
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I'll look it up... in the meantime, get that mag lotion going!

PS... Not having mag "on hand" sounds like bunk to me. They use it when people are having heart attacks or other heart issues. Every hospital should have it on hand.

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--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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So have they diagnosed her with CMT?

https://en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease

Info here on LN:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/98029#000001

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/32322#000008

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

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Carol in PA
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Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders,

https://en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease

I noticed several years ago that many of the symptoms resemble Lyme, in that there is progressive nerve damage and muscle spasms.
I really think that intravenous magnesium would relieve the spasms.

Edited to add:
There doesn't seem to be a cure for this, but I looked for treating with magnesium, and found several people who said that it helped a lot.

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JD112
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I will ask again today for that magnesium bag after letting the doctor that she has violated some rights by emptala I believe and


medical malpractice because she is trying to send her home unstable because she did not receive the treatment she needed to correct why she came into ER.

In meantime yes I agree with you, lotion and massage.


She's not diagnosed with CMT. Never has been tested but man the symptoms look the same right down to the contractions that are random in the leg. They never ever stop.

Today our goal is to submit to them a rehabilitation center we have in mind. Hopefully the rehab center will accommodate.


Will keep you posted on the process of how we are exercising our rights in the evil state of NY and her condition and outcome.

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TF
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JD, I believe you have diagnosed your sister!

I praise God for this because there is no moving forward without the correct diagnosis.

Likely the doctor will not order anything you ask due to the bad relationship. I am praying that you will be led to how to get IV mag for your sister and also led to a doctor who will diagnose her stiffness as CMT or other appropriate diagnosis and order proper treatment.

I consider your find a real breakthrough!

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Lymetoo
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Amen.

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

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Lymetoo
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"When neuropathic pain is present as a symptom of CMT, it is comparable to that seen in other peripheral neuropathies, as well as postherpetic neuralgia and complex regional pain syndrome, among other diseases.[9]"

(Wikipedia)

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--Lymetutu--
Opinions, not medical advice!

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JD112
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Guys and Gals. I thank you for the support and encouragement. I'm starting to believe if she has CMT.


Then I find it falls under Mycoplasma. This could be why nothing seemed to work for her and why the CMT comes and goes.


Those pics you see on Google images are her. I find in Buhner topics on this and some studies as well with patients having "lyme in the Past.


I'm researching Mycoplasma and see the tincture I am going to try that attacks bartonella as well. Maybe this is key to why she is stuck if


Mycoplasma causes such deformities of the feet and hands. We are starting treatment today. And we decided not to inform Doctors of our knowledge because we know it will hurt her by prescribing "LOW level PT".


We do not want that. I will update you soon on what has happened with the facility we chose if we are admitted yet or not. We have no clue just yet.

Thank you all for prayers. Your prayers are heard by God because thins as far as transfer seem like it might happen because they told Nurse to ACT Quick and were EXCITED she was "relapsing" because she is a candidate.

As soon as I find out if they admit. I can PM you the Rehab center that is impatient and accepts medicaid and medicare and most majors insurances with TOP NOTCH quality Rehab for everything Neuro.


Reviews are awesome. And I hope to supply this information to other sufferers to find a rehabilitation to their illness.

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JD112
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Also. She slept like a baby last night Hallelujah. Hope this is the beginning of a turn to recovery.

We have been denied QIO Appeal, doing it again 2nd appeal and will go to QIC next if that fails to keep her in hospital until she is treated and not "dumped" as law describes it.


DONT EVER Let hospitals have you drugged up so high. They will discharge you on the basis of being "Incompetent". Just another tactic I learned. [Wink]


We are looking for a lawyer leaving messages left and right and filing complaints to conduct and every organization possible. (LONG LIST)


She will be a testimony and regain what she has lost due to negligence and faulty doctors.


When we get her better we will step up our game to the original diagnosis of MS and challenge it.


"Its not over till the fat lady sings". Long battle ahead but for the Glory of God we will fight!

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Lymetoo
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quote:
Originally posted by JD112:


"Its not over till the fat lady sings". Long battle ahead but for the Glory of God we will fight!

-
Amen!

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

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JD112
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Sorry all for no update in a while.

We hit a big brick wall. Finding a lawyer to take on a case in the are since they are paid off ya know? DOH! [bonk] Should have realized.

So I am going to call a NYC Lawyer Tuesday and see if our case has a chance. The details involve neglect and failure to care. Not to the standard of treatment.


We sit in the hospital with no insurance because QIO denied. But that's okay. We will be moving it up to an Administrative Law Judge next. Will keep you informed.


I still have yet to get copies of IGENX test from my mom to share but she said 4 bands are positive out of the 5 according to NY. NY wont recognize 4 bands.


Only 5 to be considered to have Lyme. We are hoping the rocephin will bring out the disease in the next IGENX test we plan to do here shortly this month that show all 5 bands. Which brings me to my next question.


Health update:

She tonight was sweating again and was so whiny. I was asking her what is wrong?! And she said I don't know! She was crying. I said are you in pain?! And she says no. So then why are you crying?


I figured she must be emotionally herxing at this point. So i see her eyes are tearing and she says she hot. I feel her body and she is warm. I asked a nurse to check BP and temp. Her temp was almost normal with low grade fever.


Does this mean its working?!! Does this mean that she will produce antibodies on time for the next test to show positive lyme?!? We are so excited thinking she is herxing since we hadn't had to much to grab onto so far. What do you all think?!


After this we realize she only has 2 weeks left on script. Next question...how do we get more rocephin!?? Dr said probably cannot approve it past 4 weeks. Whats going on?!


How do we accomplish many months worth? Can i buy this privately?? She is on 1gram only as of right now. Thank you all. Goodnite and God Bless.

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Keebler
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Was she given any vaccines recently? Something to consider when anyone is in hospital or care centers. LymeToo posted this a while back:

https://www.youtube.com/watch?v=7XqRxsvNc7Y&app=desktop

"Nurse Warns of "Biologics" & Forced Flu Shots Happening in US Hospitals"

more detail here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=036530;p=0

BIOLOGICS - LINKS SET . . . and Vaccine Ingredients
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Keebler
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You say:

. . . "She tonight was sweating again and was so whiny. I was asking her what is wrong?! And she said I don't know! She was crying. I said are you in pain?! And she says no. So then why are you crying?

I figured she must be emotionally herxing at this point. . . . " (end quote)

Neutral tone, here, hoping to help explain - in kindness.

Please don't put this down to emotions. Please, please do not assume she is "whiny". The doctors do enough of that.

I know you have her care at heart (words?) . . . but "whiny" is such an insult - even if you just think it to yourself -- and it's just do demeaning. Very often that is very physical when someone is just so weak, so sick they cannot muster a solid voice.

Crying, too, can have dozens of physical connections. Emotions are involved but this is not emotionally driven. Emotions are likely more of the result.

She may not have been in deep pain that very instant or pain may not have been the biggest stress but, still, so many very real and serious reasons for a person so sick to be crying. And chances are, no one else can understand what those are. Just be with her in that space.

That term "whiny" just triggered some very bad times for me with various doctors when I could barely talk and then it was weak and I could not explain . . . or my list was just too long. One called me "a troubled soul" when I begged for help.

Never again, I tell you. I learned to never ask a doctor for a bloomin' thing ever again for as long as I live. I'll figure it out for myself. That's the damage of labels. It really closes the person down from feeling safe enough to share.

Anyone should also feel safe enough to "have emotions" - a wide range - and even cry if that's what they need to do without it being seen as a sign of weakness.

With all the pressure you are under, I hope that you also have your safe places and safe people with whom you can just be - however you are - at any particular time.

Very often emotions are a result of a haywire &/or over taxed neurological system, adrenal dysfunction, even liver toxicity. And then there is the lack of control she has at this time over everything . . . be sure she has as much control as possible about every matter.
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[ 09-03-2016, 07:57 PM: Message edited by: Keebler ]

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She has many many reasons to be crying. A Lyme herx would make anyone cry, whether there was physical pain or not. Then there's the pain of knowing that she's stuck there and all of her family is fighting for her life.

As for how to get rocephin, I don't know. There are online pharmacies but when it comes to IV .. I'm sure that's very difficult to come by.

[Frown]

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JD112
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Thank you keebler. I understand what you are saying is very justifiably as to the term "Whiny".


In our context we use it as sound. I should have wrote, she was making whiny sounds. Or whimpering sounds.


But in no way do I think of her as a whiner. If I did I would be one of those people you just described. Heartless.

She's been through so much and I think she is so strong to have endured it.


I could never live what she has lived. I don't even want to think about it. To be bedridden. I love my sister so much, please do not take it as I called her a "whiner".


I'm sorry you had such a bad experience. Shouldn't we report these doctors to medical conduct when they treat their patients as such?


I believe so as well as negative reviews online.

Thank you for breaking it down for me as I can get some insight as to what she's feeling since she cannot explain it.

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JD112
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No ,no vaccines. We tell the docs no and we refuse. Of course it stirs up tension.
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bluelyme
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She is in hell on earth.. you can order rocephin online for 6$ a gram ,no script ..it only comes with a little saline for im shot ,you would need needles ...it maybe mycoplasm ..cmt is a lower motor neuron dysfunction ,it is the three docs ..not a real diagnosis like ms or als ...

dave martz needed 4 grams for a while ...my feet and hands are loosing like cmt patient ..they said high dose vit c ..which actually makes h202...another alternative treatment ...order some from adc right away there is a place in mexico that will send penicillin also...

Maybe baclofan the doc may order that to relax muscles ..

it may be she needs tetracyclines or rifampin both can be ordered on adc ...you have a lot to learn ...but it is still possible ?...can you get a alternative doc /integrrative to order venex ?procaine ? Iv magnisium glutithione.can she get in a chair?

omg i pray for you if you see under the 8ball it happened to that guys sister

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bluelyme
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https://archive.org/details/scm-470173-undertheeightball1of2

https://archive.org/details/scm-470175-undertheeightballpart2of2

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Blue

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Keebler
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Q: " Shouldn't we report these doctors to medical conduct when they treat their patients as such? "

Sorry. That is just not the way the medical industry is organized. It's not for patients, it is for the industry.

It's like being upset when you take a BMW into a Volvo mechanic. They just are not trained to work on the other cars. Medical students are not educated / trained about lyme at all, other than five minutes of IDSA indoctrination. So, most doctors are doing exactly as they have been trained and instructed by their bosses.

Time and energy, and resources are best spent avoiding such doctors when lives are in such critical shape. Find the few who do know and find out what we can do for ourselves.

Find the advocacy groups that have made inroads such as LymeDisease.org . . . and be as practical as possible in each move you make.

Connect with as many local and regional lyme support groups as possible to find those who can help guide us regarding not just LLMDs but also lyme "minded" and lyme "tolerant" doctors of other types whom we might need for adjunct care . . . and also about navigating certain hospitals.

Also, the "MS" diagnosis may serve to receive certain care - just know when such is contraindicated regarding lyme.

It's not right, the way it all is, but in triage, you can't be idealistic. Maybe later.
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Keebler
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The intent of detail below is not just to understand what force just hit us, so to speak but how to avoid repeats.

It's not about expressing anger (I'm not good with that and tend to just try to figure out how to jump the fence and move along). It's about just becoming informed and then knowing to avoid bad doctors and find good ones.

Some explanations here about how most regular doctors (and even "regular" specialists) think of those they declare only in need of a psychiatrist instead of comprehensive medical assessment & care.

Many reading this site have likely been declared a "difficult patient" somewhere along the line, likely very early on.

We need to understand their world. For as much as we want them to understand ours, we also need to understand theirs - and then we can better know if they are capable to tackle the kinds of medical issues we face, or not.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030921;p=0

Topic: "DIFFICULT PATIENT" label & HOW DOCTORS THINK & "code" terms
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Keebler
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Catgirl just posted key detail below in another thread, and yes, this happens. And, in some states, doctors have lost and still can loose their license to practice if they acknowledge or address lyme. Seriously. It's still happening in my state.

Again, not right, but we first must know this happens so we can avoid the quicksand, the snake pit or any illusion that if we are just nice, a doctor will surely work with us. It just does not work like that.

One doctor who was understanding told me that she still had tens of thousands of dollars to pay off on her medical school loan and if she treated me she would loose her license. I did not understand the politics at that time and was a little huffy but came to see her in a more understanding light over time.

This discussion will get no where if we push it in a doctors' offices. Most of the time, the doctor is caught up in a terrible web. They have been trained to think of those with lyme as losers.

The problem goes much deeper. Besides, if doctors are not trained in lyme, they cannot treat us accordingly. Becoming a true LLMD takes specific education and it takes a long time. There is no recipe that works for each patient.

Catgirl posted this:

Originally posted by Carol in PA:

quote:
Originally posted by Jordana:
I am so puzzled by the plain blank stares I get from regular doctors and specialists.

Topic: Did I Miss the Memo......
posted February 27, 2007
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/52362?#000018

Kayda posts,
Hi, Just wondering if I missed the interoffice memo sent to every single medical dr. in the country that Lyme disease doesn't exist and if a patient comes to you for help, you are supposed to tell them Lyme is a myth and send them to a psychiatrist!


My reply, posted February 27, 2007

Actually, some doctors did get a memo like that.

A while back, I was reading some info about insurance companies, and found that some companies will tell a group of physicians that if they do not diagnose and treat Lyme Disease, that they will each receive a hefty bonus for the year.

It can range as high as ten to thirty thousand.

This puts alot of pressure on a doc.
If they diagnose and treat a case of Lyme, all the other docs in the group will also lose that bonus.

If this is true, it would explain some of the contortions doctors go through to deny Lyme in a patient.

[End Catgirl's post]
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bluelyme
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http://www.shackel.org/lyme.html

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Blue

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Keebler
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bluelyme,

Thanks for that great link you just posted for

Lyme Disease Induced Neurodegeneration - Neuroborreliosis
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Keebler
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Key detail, especially for anyone in hospital:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=131809;p=0

C difficile - prevention
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JD112
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I am mind blown. I knew the system was corrupted, but not this bad. It going to take me a bit to digest. Thank you for this information.

Keebler, I am on board with you. We are our own doctors.

I love that adc. I am going to order whatever I can this method and plan to follow a protocol.

What protocol do you believe is the best most successful. I will be pairing it with rife adding mycoplasma. Something we did not try yet.

I will watch this movie tonite. I'm so nervous to watch it that is why I haven't yet so I am mustering up the strength.

I will call on Tuesday after holidays for Doctor that I can find in intergrative medicine to help alleviate her pain with those products you recommend.

My case is with doctors that we currently have now is this.

She came in for treatment. She was assigned an intern as severe as she is, to throw their hands up in the air and say its part of the multiple sclerosis disease and end of story.


They offer no way out. No remedy to her pain. Then then they tell her she's not in pain. So she yells out YES I AM!!! The docs stay quiet. Then my sister yells out I am sorry I am such a burden!!


After the doctor tells us in front of the patient as if she didn't exist, go home and die. Discharging her on grounds that she is "STABLE" with low level PT and nurses ect.


Why not hospice if that were true?
So the doctor is playing VERY dirty to her benefit. We have a witness thank God.


This alone makes me want to purse the doctor. She is still in hospital because they have not discharged her and Medicare will not cover anymore.

This is another red flag to me that something is really wrong with what they are doing. She has no assigned doctor either.


We fired last one and told nurses who we want and they have not even delivered the message. We know this because we asked her in public in person to call us and she looked like she had no clue.


Supposedly my sister has one but no one has met or seen her in 3days . We want to ask for testing for the CMT but who do we ask?


Very corrupt! No one knows a thing. Should we just leave without discharge? And if we do what happens?

Does this aid my sister for better judgment against hospital when we submit to the third level appeal that they couldn't even fulfill a discharge?

They are supposed to discharge her on safe grounds. They told us their hospital cannot offer her what she needs. They are supposed to send her to specialist that we demanded but haven't.

They want to send her home or nursing home. But how does those two stop the pain she originally came in for. She's tried the meds and she says it doesn't work.

It's peripheral nerve damage. We need someone who knows this. But once again. No doctor (about 5days no doctor) come Tuesday. We know where to go to get help specific to the nerve damage.


But according to her docs. We need to give up and let her live in pain because their medicines don't touch this specific pain. It just makes her dizzy and high. Something they want.


I have no clue what is going on anymore. I know one thing though. I will get this girl better.


Somehow and I am asking God our heavenly father in heaven for direction. Your advice and help is pointing me in a positive direction to figure this out.


I was so scared to get the meds online. But as I see you are familiar with this procedure, I feel I can do it and I feel it can be a way.


My question is , how do we provoke a positive Lyme via IGENX. IGENX shows 4 out of 5 the doctor says to qualify. Will rochephin bring the demon out on new igenx labs we will be taking in next 2 weeks?


I want to take a moment to bless you all. I thank you all for your help. God bless you for the strength you have and I pray that you will always be 5 steps ahead of your illness that it can never get a hold of you.


To be able to type and respond back to me each and every one of you and everyone else who needs help is a blessing in itself.


You have done all the homework and should have been doctors yourself. You are all crusaders on a mission for God to direct people in the appropriate direction.


Your eyes are opened and you stand strong with disease instead of being blinded and accepting it as "it is what it is". Your fight shows there is hope.

Because of you I feel I have hope to help her. If I can help her through God then glory to him.


He will restore a lost soul who is scared and wants to live. A mother who feels she has lost everything and a daughter to her mother.

My sister who I never got to know in a healthy state. I can't imagine what life would be like if she could just walk.

Even with a walker or cane. Just to be mobile. I just want to cry, I love her so much. These doctors have failed us big time.


Then brush it off like nothing. I hope justice is served to them by God for those who know what they do is evil in the name of money.


I pray for their souls because I know when God is ready to move on them they will regret everything and find no relief.I hope their eyes open that they will find a way to quietly help us and everyone who seeks honest help.

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Keebler
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My circumstances are different from those of your sister in that I have no choice but to do what I can, on my own. My hope is that your sister still has some options on the table even if they've not yet come out of an oven (so to speak).

It was not meant to be carte blanche advice for all matters. Even if not LL, there are still some very good doctors for some aspects of medical care. And rather than you having to invent a protocol for your sister, it's really key to have a LL doctor, LLMD or LL ND to guide you.

My point is that there are always other ways, yet expert counsel matters still where at all possible. Any decision can take weeks to study the choices.


Be careful, though, in the current setting - that your assertiveness is not misinterpreted by those in medical facilities as Munchausen's by Proxy. That charge has been lobbed at some parents of children with lyme and we all have to be mindful that it's an underhanded trick not beneath the IDSA or by facilities.

It could handcuff you from helping with your sister's care and ensnarl you in expensive court battles for years.

I'm not saying not to become more educated or to keep quiet. Just be mindful.


I cannot and would never assume to know what kind of protocol would be good for another, especially your sister.

Some things I do know: it may be best to just duck out of the setting she is in and get to a location where she can rest.

This is not giving up but realizing that REST is the most important requirement right now. She MUST be in a calm environment. Building block approach. That foundation has to be there before anything else.

Can she go home? That would be best as control then is in her hands (or she can direct that).

Another facility will not likely be a restful or peaceful place. And with Medicare and Medicaid, choices can be dire. Just warning you. The treatment is by the book, bare bones.

And if she goes to a facility that is covered by state Medicaid, usually, every single penny of a person's income is literally taken out of their control to pay for lodging / care.

I don't want to drag you down but it's important to know this. Any roommate she might have will also bring a full set of things to consider with sound, lights, motion, etc.

Food choices are not likely to be very healthful, either, for someone wishing to avoid food additives or even gluten.

Home care might be available OUTSIDE of the medical system with your county senior and disabled services. In some states, however, to meet requirements for any home care a person must be unable to toilet themselves or reach a utensil to their mouth to eat.

States vary, though, the "MS" diagnosis might also be helpful to obtain some volunteer help through your local MS organizations. Even if you disagree as to the CAUSE, the situation does meet the framework for respect and help in some ways, though, some groups.

I understand your desire to cover all the bases but, now, step back and cover the basics with her comfort.

Too much can be, well, too much. KISS. Keep it simple, sweetheart.

Connect with your local, regional and state lyme groups. Their are others who have been where your sister is. You must find those in your own state for some roadmaps.

Find the ways to work with the system for certain care & supports, of course, stay in as much control over adjunct choices as possible. One step at a time.

She may not have voiced this, yet for many with neurolyme / TBD, hyperacusis is a very major element. Before a calm place, a QUIET place is my number one requirement. No buzzes, no beeps, no TV, etc. If your sister also has hyperacusis, being cared for at home - or the home of a friend / family member - is likely the best choice IF you can fashion some kind of care network.

A QUIET place is actually the top medical priority for anyone who deals with any kind of sound sensitivity.

If she does have hyperacusis, perhaps an audiologist could help with options for quieter places, for an advocate.

And, if she does have hyperacusis, never let any doctor call it "phonophobia" as that puts it down to a psychiatric issue.

If she does have hyperacusis, be careful to never say "she does not like noise / sound" but that her ear nerves cannot tolerate it. Fans, vibrations also can be torture if there is to be a room assignment, be mindful of things outside of the room, too, that border the walls.

Also know that adrenal depletion also is a major aspect of hyperacusis. Adrenal patients require quiet and dimly lit settings.

Perhaps, to her advantage in this aspect, an "MS" diagnosis might also help her be respected for any sensory sensitivities as many with the diagnosis of "MS" often have this trouble, too.


VACCINE CHOICE? Mentioned in post above, yet, if she is to go to any other kind of facility, will she have total control over any vaccines? Can you / she be certain of this?


Ask her where she needs to be? Ask her what she needs, wants. Be sure she is the captain of her own ship. Your skills as a navigator can be key, of course, chart various courses and let her take the helm. She has to be one to decide her next move.

Aside from medical care, I hope both of you each day can devise some kind of "comfort" routine, be that in music, art, jokes, whatever. Comfort matters greatly in care, in the very atmosphere . . . we all must have some ways to appreciate beauty.

Take care.
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[ 09-04-2016, 08:07 PM: Message edited by: Keebler ]

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Keebler
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Also consider in possible next steps, if any way possible:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS


http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS educated LL

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Integrative / Holistic M.D., etc.

Also includes links to ARTICLES & BOOKS by all kinds of LL authors - and information about herbal and nutritional supplements.
-

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Keebler
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Mentioned in many posts above . . . Charcot-Marie-Tooth . . .

that can be a painful process of diagnostics with nerve conduction tests and biopsies. First, maybe this would be good try. Medicare may not cover the genetic tests but could check.

I would not recommend a nerve conduction test until the very last resort, and even then, unless they a cure, I'd just past on that. It can be excruciating.

So . . . I sure hope this helps . . . and far less expensive than IV magnesium, more practical.

http://drcarolyndean.com/2015/11/muscle-or-nerve-problems-look-to-magnesium/

Muscle or Nerve Problems? Look to Magnesium

Carolyn Dean MD ND | Tuesday, November 24, 2015

Excerpt:

. . . neurological disease:

“A friend of mine, 42, was diagnosed with that Charcot-Marie-Tooth and was told that it was all downhill from here and that she would keep losing feeling in her limbs and soon not able to walk and that she should just enjoy her life…can you imagine!

Thankfully she had the good sense! to talk to me and we immediately ordered ReMag, ReMyte and Blue Ice Royal. I’m so happy to report that she is walking properly again!

She feels amazing and all her symptoms are gone. She says she feels like all her body parts are now connected. I just wanted to give you this great feedback!”

Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States.

The neuropathy of CMT affects both motor and sensory nerves. Motor nerves cause muscles to contract and control voluntary muscle activity such as speaking, walking, breathing, and swallowing.

Pain can range from mild to severe, and some people may need to rely on foot or leg braces or other orthopedic devices to maintain mobility.

If you know anyone with muscle or nerve problems, how about giving them the gift of health this holiday season and sending them ReMag and ReMyte, or better still, a whole set of Completement Formulas. . . .

[Full article at link above .]

See side links and also Scroll down far below article end to many great links by the author, including specifics about

Mineral Repletion Guidelines:
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[ 09-04-2016, 09:55 PM: Message edited by: Keebler ]

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Keebler
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Hospitals are usually no place to heal. How ReMag formulas solved some puzzles the hospital had missed and made worse:

http://drcarolyndean.com/2016/08/elderly-hospital-patients-arrive-sick-leave-disabled/

Elderly Hospital Patients Arrive Sick, Leave Disabled

Carolyn Dean MD ND | Friday, August 12, 2016
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Lymetoo
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I can vouch for ReMag and ReMyte!

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

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dogmom2
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I wonder if Bea seibert might have some advice since she went thru so much with the hospital with her husband.
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Carol in PA
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dogmom2, that's what I was thinking too.

I haven't seen her around here for a while, but I can email her.

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bluelyme
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Jd112...i am praying for uou and your sister ...read ellie lobel story after you watch the movies ...look into getting a epi pen and bees it has helped

--------------------
Blue

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hopingandpraying
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I would contact the Lyme Disease United Coalition at (800) 311-7518. They are very knowledgeable and might be able to provide further information for you. Website is: www.lduc.org

If you scroll down on the resources section, www.lduc.org/lyme-disease-resources there is a lot of good info which you might be able to use in getting help for your dear sister.

Holding you all up in prayer.

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JD112
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I am sorry all for the delayed response. I want to let you know that I am here and will be taking my time to review what I have missed.


I have been sick the last couple days due to a strong cold going around that I caught from my kids (fever + chills) I am better now and will reply shortly in response and update.

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JD112
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I totally understand. We will be seeing if we can expedite an appointment with an LLMD about 2 hours away from us. He is someone who she has seen in the past. He treated her with Doxy 200MG X 2 a day with Plaquenil and off and on flagyl.


Only one time mephron and scripts for methlycolbamin. This is as far as we made it with treatment with him. We are hoping with the picc line in her he will pick up on it and continue it.


We asked her what she wants and she is ready to come home. Tomorrow we hope should be a discharge with PT ordered. We are also going to work with the discharger for an appropriate list of medical equipment she could use at home as well as hopefully secure at home care with an Aid.


She does have a routine at home that she misses dearly and that is with her daughter being a "jokester" making her laugh and watching movies together. That girl is her pride and joy and makes her laugh all the time.

I will be ordering Remag and Remyte. I am loving the reviews I see.

I will try to search up Bea seibert and look into the epipen.


On the back burner, The link to the ADC for the Rocephin I see, if worst case scenario (I pray not) how is it that this is used and are the products safe?


I will be popping in all over link on the forum. Looking into rife. Thank you all.

UPDATE ON HEALTH:

Spasms nightly continue. Not as constant but still strong. IDD ordered one more week for her and let us know it is beyond her at that point. So Rocephin stops in a week to complete treatment unfortunately. Mentally she is alert.


Shes not sleeping like she was as much but still sleeping alot non the less. She also broke out in a low grade fever 3 nights ago and with that her blood pressure was 112/62 I believe.


Which is RARE! Shes always low BP and never has fevers. It hasn't happened since however. As soon as the picc is started she complains of burning pain. She says her skin feels like its burning especially in her knuckles and that it hurts very bad.


Her voice is still weak and slow and she is still stiff in the legs and arms. She seems to be "locked". I am hoping with the magnesium it will help to release.


She is supplementing with Magnesium during the treatment (not doctors orders, they wont do it - they refuse)


Question:

I was informed she received a 3 day infusion years ago and ever since the infusion due to possibly bartonella attack (she couldn't breathe) This led to her rapid decline.


She went into the hospital sitting and being able to brush her hair and eat somewhat to becoming bedridden shortly after. Is this a common occurrence with a steroid? The doctors were treating her under multiple sclerosis.

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dogmom2
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JD112 on this site bea seibert posted under seibertneurolyme.
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Keebler
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Q: Is this a common occurrence with a steroid?

"informed she received a 3 day infusion years ago and ever since the infusion due to possibly bartonella attack (she couldn't breathe) This led to her rapid decline.

She went into the hospital sitting and being able to brush her hair and eat somewhat to becoming bedridden shortly after. Is this a common occurrence with a steroid? The doctors were treating her under multiple sclerosis. " (end quote)


Yes. Steroids can do that.

Her records should be able to trace what that was - and also contain a note to avoid that in the future, whatever it was.

I would not spend too much time on that now, though, as other matters are more pressing. Just find out what it was so her chart can have a caution note and she knows what it was.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
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Keebler
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Re: similarities in your sister's situation and that of Bea Siebert's husband, Steve.

For the record, Bea is an amazing person with good intelligence and a heart of gold. She is an excellent researcher and never ending advocate. If there would be anyone I'd trust to have on my side during an illness - and especially a hospital mystery tour - it would be Bea. So the accusations about Munchausen's are just so very wrong. Just to be clear.

And, for clarity, she apparently did not have official legal charges of that brought against her - but it does not take that for doctors - for an entire hospital - to simply torpedo a patient or relative. If it's "suspected" or in the chart, that's the blow.

The legal mentions are what she is bringing against the hospital. It's been awhile now and don't know where that stands or how it worked out. It's "gone quiet" so likely still in the works.

The key is, though, it's best to get doctors and hospitals to do their best to help patients in the first place.

Yet anyone serious in the hospital who deals with lyme has gotten these kinds of obstacles. The reason I mentioned being aware of possible criticisms / charges of Munchausen's is that Bea came under fire for that erroneous accusation during her husband's hospitalization & subsequent death due primarily to untreated Babesia.

He died on October 9, 2012

She may well still be in the middle of a court case around that - not the charge of Munchausen's but about negligence on part of the hospital.

She has apparently deleted most of her posts after that time. A few key mentions are still in her posting history. So that we might learn from that, see next post.
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[ 09-08-2016, 05:08 PM: Message edited by: Keebler ]

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Keebler
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-
www.facebook.com/BabesiaBlows/posts/380425702105358

Babesia Blows [Facebook page]

September 12, 2014 ·

~ Stephen Ross Seibert, 57, of Martinsville, VA passed away October 9, 2012 at Roanoke Memorial Hospital, Roanoke, VA after a 12 year battle with Lyme Disease, Babesia (Tick born form of Malaria) and Bartonella (Cat Scratch Fever). . . .

. . . "As far as I can determine there has never been a lawsuit filed for wrongful death due to a missed diagnosis of BABESIA.

For anyone not familiar with my case, I would like to add that one lawyer I consulted after reviewing the autopsy and some of the medical records is 100% convinced that Steve died from babesia.

As you can imagine I am having difficulty finding an attorney willing to take the case. The statute of limitations is rapidly approaching." . . .


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=recent_user_posts;u=00006416;filter=topics

Bea - seibertneurolyme - Member # 6416

Posting history - Topics started

Last topic started was on 06 May, 2015

Last topic participated in was on 10 May, 2015
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Keebler
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Re: Munchausen's & disregard of tick-borne infections -- how doctor's think - the constructs of the hospital system.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=130602;p=0#000000

seibertneurolyme post of 03 December, 2014, starting with:

"This whole legal thing just keeps getting stranger . . . "

" . . . Somehow I had forgotten that that doc was the first one to mention Munchaussens. From that point of course then just about every other doc mentioned that as well.

And then the doc went on to say that they would test for lyme and babesia to make sure that it was on record that Steve tested negative for those diseases.

This all followed several negative comments in regards to LLMD's. . . . "

Bea's post of 05 December, 2014

" . . . Actually I am not worried about the Munchausens issue. I actually think it is helpful to my case. The docs did not do any psych evaluations on either hubby or me. They just put that in the records initially because we believed Steve had chronic lyme.

The expert witness I have has already covered that in the questions I asked him - I have a very good medical description of that syndrome from that doc and obviously it does not fit.

In my opinion it simply shows that the I.D. doc had already made up his mind that not only did Steve not have a tickborne illness upon admission to the hospital, but he had never ever had any tickborne illnesses.

A different I.D. doc told me that verbally - my response was "Then explain hubby's abnormal brain SPECT scans." Which of course the doc could not do.

In my opinion the statements made by the docs had a great bearing on the treatment Steve received.

I probably sounded like a broken record discussing babesia, but their eyes and ears were closed. The phrase I ran across recently is confirmation bias. It definitely fits in this situation.

It is this attitude that has to change for tickborne patients to be taken seriously. . . . "


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=130904;p=0#000000

seibertneurolyme - Member # 6416

Topic: Steve Seibert Babesia Case - Update

14 January, 2015

Excerpts:

" . . . filed the nonsuit on December 22 . . . ." [2014]

" . . . I also need to talk to Steve's LLMD to get a better understanding of the exact mechanism of his death. The lawyers were having a hard time understanding exactly how babesia kills someone.

I really like the lawyers I met and hope things work out with the firm. They spent a couple of hours with me and really tried to understand my viewpoint.

They seemed shocked at the comments made by the hospitalist in the medical records and as one lawyer said

"I have never heard of munchasuens causing lung failure."

I think I know what I need to do now to move the case forward. . . . "

---
15 January, 2015

. . . The lawyers are not Lyme literate, but even they could see from the comments in the medical records the bias against tickborne patients expressed by the hospital physicians. . . . "

" . . . LymeCFIDS - Technically Steve died from heart failure - bradycardia - within a period of about 5 minutes his heart rate just slowed down and then stopped beating.

No tests were done on lung tissue looking for babesia. That is one of the things that I am going to have the pathologist A.M. look at. . . . "
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Keebler
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Pamela Weintraub, an excellent LL writer, has a very good article on Munchausen's erroneous charges against some parents of lyme patients.

http://www.astralgia.com/

Unusual Suspects . . . 8-page article

http://www.astralgia.com/

Author's website
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Keebler
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You say that " . . . She is supplementing with Magnesium during the treatment (not doctors orders, they wont do it - they refuse) . . . "

Be clear whether she is doing this or you are. While the doctors won't do this, I do think, you still need to inform them what else is being done so that they can consider the overall balance.

I know that's tricky at best and sometimes we do have to just slyly do something that we know might help yet it's dangerous for two reasons: legally; medically.

Magnesium Rich FOODS might be a better way to achieve the nutrient is on board. Lotions might, too, but I'm not familiar with those as I've had serious skin irritation when I tried them. Others seem to have found some that work and I think you've got some, still be mindful of overall dose and kidneys.

However, since she may well be home today, looking forward she will have more control. Still considerations with magnesium.

Be certain her kidney function is good. And the type of magnesium, some kinds are easier on kidneys than others. But it must be 3-4 a day, never all at once as too much at one time can lead to kidney stress / damage.

Consider all the other Rx, etc. she takes, too, in the kidney load. Detail here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
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JD112
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I have been looking into Bea Siebert's pages and write ups online. What a strong woman. The hardships shes endured. I hope she has made progress with what she trying to accomplish. I can relate what a difficult battle.

We got a response from QIO in a letter today. What I read were ALL LIES. They destroyed her chances into being excepted into any facility based on the write up and decision the QIO doctor echoed back to us.

In it they state that the patient denied treatment via pain relievers and others. Shes been taking IBU's/Gaba/Flexeril/oxy. Shes just not been taking them at the insane dosages like they want her to be drugged up. She takes them as she requests them and needs them.


But on their part they also failed to give them to her at appropriate times because she was scheduled for PT early mornings and decided to keep her drugged to miss those PT sessions. To which we asked if the meds could be scheduled in a way where she would be awake for PT.


Which they complied and decided to not even send in PT at all. Of course on our end we will dispute it and tell them to refer back to nurses chart to show she very much has been accepting of their "therapies".

The doctor in the hospital has abandoned her. He doesn't even come in. He walks the floor and we ask will he be here and they say "Oh he was just here" to never return. We caught on to their game. It sounds insane I know but they are waiting on a discharge ASAP and they are holding us.


We request to get out ASAP and arrange therapy at a facility near by our home for her. They just need to get their butts in gear and order her a screening. I don't understand what this hospital is doing. Its like they are just trying to collect money from her for being there somehow.


I appreciate the info Keebler on the importance of taking it slow and with caution to the organs that can be at risk and I highly respect your caution because if those areas suffer the results can turn for worst I also understand what you are saying as to who is supplementing. We have a list from the LLMD to supplement with.

We would like to find another LLMD in our area or in a radius of 3-4 hrs of us that might possibly accept her insurance if at all possible because her current llmd we suspect might retire. Which we pray not anytime soon.

Update on Health:

Right eye is teary. She says she feels like her eye is burning and also blurry. She described it is hard to see in the eye. This is after the IV again and burning feet. She is on 1 Gram Rochepin.


We did the Grid For Macular Degeneration because she is on plaquenil but she sees everything fine. Body temp was 98.3. Not sure whats going on with the eyes but hoping it clears in the AM or is just a temporary herx. I also have her papers from IGENX here with me now.


12 kDa. -
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28 kDa. -
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**31 kDa. + IND
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**41 kDa. +
45 kDa. -
58 kDa. -
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**83-93 kDa. -

It also say IFA, B BURGDORGERI G/M/A/ 40 Equivocal

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JD112
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Discharged home. Finally. Got reports from doctors and contacting lawyers. False report were made.


Her eye is better she can see again. Will let you know update tonite.

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Keebler
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" . . . The doctor in the hospital has abandoned her. . . ." (end quote)

You cannot make him be the kind of doctor she needs. He's likely technically fulfilled his administrative duties, we all know that when so very ill we just require more. Sad, though, that hospitals are often not the places that offer such care.


Neutral tone of voice here, just looking at some of the practicalities.

False reports are always made in most patients' file - so many mistakes, anyway.

First, your sister should contact the patient advocate office at the hospital and see what she can do regarding corrections. She can't really "correct" a file but the patient can COMMENT on any notes to amend, so to speak.

That really is the first step. They will let her see her file and have time and a small room to make her notes.

Beyond that, there are actions she can take with the hospital administration or the doctor's office. And, if approached in a way of "how can we all better communicate?" or "how can this other information be considered?" that has a better chance for change.

Even more direct language can be used yet the goal should be for improvement going forward. And, dare I say, for improved relationship communication building so that patients and doctors can work better together in light of some of the (both sides will say) sticky administrative rules in place.

You can't just go about this without her signing over a power of attorney to you or other legal measures. You can do basics to help guide her, of course.

I really urge her not to pursue lawyers at this time. According to the test you just posted, there is not much to stand on - the way they will look at it.

yes, we know the importance of the bands that are +, but in a court of law, they will use the CDC definition and criteria for diagnosis -- and the IDSA's "guidelines" for treatment as well as

Medicare and Medicaid's insurance benefit schedules. You can't fight for lack of care that does not fall under the CDC, IDSA and the insurance carriers.

We all know the complexities involved yet, at this time, please focus on the matter at hand. I don't think a lawyer if going to be able to help her. And if there is money for that, it's best spent on treatment from those doctors who know what they are doing.

As for the future and what's being done to help all with TBD, we can all look to advocacy efforts of the LDA and LymeDisease.org as they are often a wonderful vehicle to help us scout the lay of the land and travel such roads. They are doing groundwork so that substantial changes can happen in the future.

To take this to court, there has to be legal precedent. That is not there (at least regarding lyme and her test results.

Lyme is defined as short term, too, not longer term - that is not always true - so many times not true, of course but a court of law will use government agency definition. The CDC, IDSA, NIH do not recognize chronic lyme or tests that really do show persistence. It's wrong but a lawyer is not going to make the doctors see that. No judge has that power.

Lawsuits are about laws that have been broken, not about bad laws that need to be changed.

Lawsuits are not about laws that do not exist, either. It may seem and - I will go so far as to say it actually IS - unconscionable to us, to those who are very ill and require more than what a hospital, a doctor, is able to provide that they just turn the other way.

But a court of law is not going to offer any recourse for such matters as long as they are technically fulfilling their duties as defined by their administrations and professional governing bodies.

There are other ways you can help your sister with needs at this time.

Energy, money, and time matter so much now. IMO, the focus must be sharply on what can help now, who can help, alterations in way things are done . . . rest and attention to a routine, hour by hour.

It's a hard matter to consider but trying to make any doctor do what they are not trained to do, not authorized to do, is not going to be seen as reasonable by any attorney - especially if other recourse methods have not yet been pursued (patient advocate, etc.)

There may be other instances while in hospital aside from lyme issues, yet, whatever grievance, it's best to first start with a patient advocate as a way pursue discussion over handling differences, well, differently. Mediation is another step to always consider before any lawyers yet they always have the law as their "game board" and can't just go on what SHOULD be done even if common sense.

Going forward . . .

Connect with your local and state lyme support group leaders, too.

To clarify any misconceptions as to why I even posted about Bea's husband's case - that has an entirely different set of diagnoses and circumstance from that of your sister's. Babesia is a key element there. And there are other aspects that were not in the excerpted posts above. It's just very different.

I posted that detail to help understand how doctors think / function in a hospital and to be mindful as to how to avoid their misinterpretations of your behavior and the issue of false accusations of Munchausen's in either patients or their family. To know this so as to prevent getting to that point.

I do hope the worst is behind your sister and that, somehow, with her perseverance all your brain and heart power combined, a path will become clear that will be helpful to her recovery.
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[ 09-10-2016, 03:20 PM: Message edited by: Keebler ]

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Keebler
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JD,

Here's hope that your sister is settling in nicely back "home" (whether her place or other).

Just wanted to say I hope she is much more comfortable and has some joy and beauty in being back with her daughter and in a real place.

Hope you are also breathing easier. As the weather cools down soon, my guess is that things will become easier.
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[ 09-13-2016, 12:05 PM: Message edited by: Keebler ]

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Lymetoo
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I hope she can get some rest now. We'll keep praying for all of you.

[group hug]

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

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bluelyme
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Keep us posted ...get her on some treatment if you can ..does she still have picc?dobyou see a llmd

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Blue

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