This is topic Hospital FEUD and DRs disregard IGENX in forum General Support at LymeNet Flash.


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https://flash.lymenet.org/ubb/ultimatebb.php/topic/3/36491

Posted by JD112 (Member # 43247) on :
 
Hi all. I am curious to know how you would handle this situation.

My sister is totally bedridden. Function of motor skills ect are gone.

We demanded the Doctors to stop looking at her Multiple Sclerosis diagnosis because

they insist no Lyme.

Currently she is in the hospital now and we have presented the test of IGENX to the

doctors. Their response? The IGENX test has been know for fraud and is not accurate.

The test (the way THEY interpret it) is a big fat negative. On the IGENX test I have

the doc explained to us that it is positive. The docs and I go BACK and Forth


"YES IT IS"
"NO IT ISN'T, ITS MULTIPLE SCLEROSIS"
"NO ITS LYME."
"SORRY you cant get past it but its Multiple Sclerosis."


Shes on IV Rocephin tonight ready to be PICC line tomorrow thanks to the demands of

an Infection Disease doctor. How is this possible to make it this far with a picc

line if all "Evidence" is a negative, I still cant figure out how it became to be

ordered.


The I.D Doctor warned me only 4 weeks of treatment and that after that I am back to

re-fighting this nightmare that I just got a break from. HOW do you all who receive

IV successfully get the treatment for months!?


How do I fight off these monkeys that try to shove papers in my face showing

negatives and pulling out the multiple sclerosis report that is over 15 YEARS old

made by the assumption of one Doctor one night in the E.R.? Please assist. If you

look into my profile you can see I registered 2 years ago I believe and not much

progress has come of it except she is alert and not drooling now. Still bedridden and

spasm'ing however. Total muscle waste. We are in a bad place right now.

(LLMD discussion removed per Lymenet advisory about not discussing LLMD doctor protocols on the board)

[ 08-25-2016, 02:24 AM: Message edited by: Robin123 ]
 
Posted by Tincup (Member # 5829) on :
 
So sorry to hear about your sister's condition. It is so great she has you to help her along. You are a big help to her, even though what you are going through is very frustrating.

So sorry you weren't pleased with the doctor. In my book he is top notch, always has been and always will be. Not many better. I wouldn't hesitate to have my own family see him and I am really picky about that.

You said.. "he really didn't do anything for my sister, not even so much as a Picc line ordered when we requested. He told us it is dangerous and left it at that."

Just from your very brief description of her condition and the fact she is bed ridden, has severe muscle wasting and is non-functioning, I would have to agree 1,000% that hitting her with a picc line and IV antibiotics at this point could be dangerous.

I am not a doctor, but if it were for my family member I certainly would not recommend a picc line with a month of IV rocephin in this situation. Sorry about that!

The fact the ID "warned" you that was all they'd prescribe for her shows he has no clue what he is doing.

You are right about the IGeneX tests. Having them done while taking antibiotics is not the greatest idea. And yes, the ID doctor was trained to bash IGeneX. If he said anything different I'd be shocked.

Not much can be done to remove it totally once she gets the MS label. You could start fresh in another area and NOT provide records. But that label will follow you all around as long as it has been used on her in the past.

If they were to now say no MS it could generate a law suit. They are trying to cover their butts.

We are here to offer support and try to help with questions, so please let us know if we can do anything for you. OK?

[group hug]
 
Posted by JD112 (Member # 43247) on :
 
Thank you so much for a quick response. Dr. ... did not express to us

that in HER current condition it could be deadly but as a general

statement UNLESS I misunderstood. He continued to press for oral

however which we gladly accepted hoping for a turn. What options do we have

right now?

She has been on Doxy -Flagly - Plaquenil and Mino - Azithro- Mephron and a

few others.


What would you do in this case? The ID doctor said privately in their

hands all they could help up to in 4 weeks for I guess a disease with no

name and to head up North next for further treatments and to seek help.


How do i help my sister!? I am so afraid come tomorrow now that it is known

to me the muscle waste and being bedridden is an issue and that her life is

in our hands. What would any one of you do for treatment if you were in this

situation???


So far with 5 Days of IV Rocephin she seems to be getting better. She is

sleep talking (NEW?)- Her feet are on FIRE as well as her hands after

treatments (new) and appears to be alert.


Could this treatment be dangerous going PICC????? I'm so tired and so

stressed. Please excuse my hostility if I sound as such. I have been in a

major battle the past week with Doctors I don't know who to trust.

(Note - as a moderator, am deleting doctor identification above since we cannot name LLMD doctors here if discussing protocol, and actually better off not discussing protocol on the board, due to HIPPA laws)

[ 08-25-2016, 02:22 AM: Message edited by: Robin123 ]
 
Posted by Keebler (Member # 12673) on :
 
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Your "hostilities" are understood and warranted - though some doctors may fall back on the legalities to protect themselves so they may not have freedom to practice - or even say - what they would like / should.

". . . So far with 5 Days of IV Rocephin . . . ."

risks? you wonder. With this Rx, it is required that a particular Rx also be on board to PROTECT GALLBLADDER. Actigal, I think, or similar.

as for burning feet, BARTONELLA should be assessed, too.

As to other risks, one thing very important is to always have some kind of liver support on board with any antibiotic treatment.

A herxheimer reaction can be devastating. Liver support is essential to help moderate that.

And probiotics. That's all I have energy for now, sorry. Good luck to you both.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Posted by JD112 (Member # 43247) on :
 
Thank you Keebler. I will bring her some probiotics

and will milk thistle be enough for liver support?
 
Posted by JD112 (Member # 43247) on :
 
I DO want to add in that this morning her blood

pressure was low and she was taking flexeril days

prior (for spasms) that the docs stopped today and

upped her iv? It returned to normal, could THAT

alone be a sign of an issue not to go Picc??
 
Posted by JD112 (Member # 43247) on :
 
I am thinking about calling off the PICC line for

her at this point. If the script is written it can

be forwarded to a Lyme Specialist in NY to

oversee in the next couple of weeks correct? Or a

hospital transfer to that facility? As far as I

know..there is no order for a gallbladder support

put in and as far as bartonella - i thought the

Rochephin was for that?

I do not want a dead girl in my hands. WWYD????

**edited city of LLMD**

[ 08-27-2016, 12:47 AM: Message edited by: Lymetoo ]
 
Posted by Keebler (Member # 12673) on :
 
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For now, maybe, milk thistle will help. But not at the same time as the Rx as it can cause the Rx to be moved on out of the body too soon. Supplements are best 2-3 hours away, by both clock directions.

Milk Thistle can be too strong for some. Dandelion (herb in a capsule) is more gentle.

Also, in light of your comments about doctors, it's important to know that for a variety of reasons even some "true" LLMDs have changed the way they "see things" or work with patients. We can't take who they were before as always indicating who they are now.

Hope others can help with your questions. Take care.
-
 
Posted by JD112 (Member # 43247) on :
 
Thank you Keebler. I appreciate your help to make my decision. I think I will STOP the picc order and try to take it to a LLMD.
 
Posted by Keebler (Member # 12673) on :
 
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No. She may need to get the PICC line placed to continue whatever IV they will give her. If they are now getting IV and doing okay, it can be dangerous to just stop it.

You say "So far with 5 Days of IV Rocephin she seems to be getting better"

That is GOOD. Don't stop it now. Sounds like she has at least 23 days to go and the PICC line would be needed for that.

It can takes months to get into a LLMD. And most do not take insurance. If medicare, a month is all they will pay for but then you'd hopefully have a more comprehensive approach for how to transition off of IV.

As she is in hospital right now, I'm not sure you can give her ANY Supplements without their approval.

I thought you said she is to get a month of the IV antibiotic. That could help her walk out of there. To pull it now could doom her to be bedridden.

BUT the gallbladder Rx is absolutely vital to have on board with some liver support - and not to take things like acetaminophen or ibuprofen, for instance (see liver links for why).

Suggestions here may be very helpful but they are not intended as advice to just pull the plug on current IV mediation that is helping someone improve even if in 3 weeks that likely will end. Good luck.
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Posted by JD112 (Member # 43247) on :
 
Her blood pressure was 95/50 something yesterday morning. Sleeping all day - They raised her fluids to try to raise her blood pressure and it went up a little bit. She continues with the spasms. She is just sleeping a lot more these last two days than she did when she came in. She cries from the pain when people touch her hands or arms. She cries like a baby would. Should I transfer her to a facility that treats Lyme in her condition rather than the facility she is in that does not acknowledge Lyme?
 
Posted by JD112 (Member # 43247) on :
 
She hasn't walked in the last 3 years after a 3 day steroid infusion on the first day being treated for multiple sclerosis.
 
Posted by Keebler (Member # 12673) on :
 
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Q: "Should I transfer her to a facility that treats Lyme in her condition rather than the facility she is in that does not acknowledge Lyme?"

There are no facilities that treat lyme. None at all. Sorry. So sorry.

as for pain relief: therapeutic massage, liver support are starting point. If she is bedridden, massage is required, but in ways that will work for her. Lymphatic massage so very much required.

As for the IV antibiotic . . . even if they do not acknowledge lyme, that she is getting better now on day 5 of IV rocephin, and they have approved a total of a month, go for that WITH the precautions mentioned above.

If the gallbladder Rx is not on board, she could require emergency gallbladder surgery.

Without liver support, pain will continue to be worse from herxheimer reaction. But HOW you manage to get her onto some liver support can be tricky in hospital.

They may "allow" NAC. That is N-Acetyl-Cysteine or GLUTATHIONE. Glutathione could be give IV.

MAGNESIUM is also key for pain management and to lessen cramps. IV magnesium or shots.

If she continues to improve on IV abx (after PICC line placed) she could walk out of there, perhaps in a day or two -- in home care would be needed of course.
-
 
Posted by JD112 (Member # 43247) on :
 
Im sorry, not facility. I meant to a llmd.
 
Posted by Keebler (Member # 12673) on :
 
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It can take months to get into see a LLMD. If she is now "totally bedridden", that would be impossible. She has to get better enough to be able to get out of bed for a few hours and get into a wheelchair for transport. Sigh.

If she gets 3 more weeks with the precautions and IV abx . . . then if you have a strong herbal program for when that ends . . . that seems a consideration for until she can see a LLMD.
-
 
Posted by Keebler (Member # 12673) on :
 
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Actually, the ID doctor in your first post sound pretty lyme aware and stuck his neck out to insist on the month IV rocephin. But his hands are tied with the IDSA rules and, likely, any insurance rules, too. One month is the limit. Actually, 30 days.

Gotta get that gallbladder protection on board, though. ASAP.

Sometimes, people manage ways to get the IV extended but . . . .
-
 
Posted by JD112 (Member # 43247) on :
 
I had called yesterday another hospital with infections doctors that treat

lyme and asked if they would accept a transfer and they said we would need to

speak to the nurse in the current hospital and if they have an available bed

they will accept her. I googled a Infectious Disease doctor that accepts

medicare in N.Y. and the receptionist said she can most likely be

treated with the ID doctor if she can be transferred. I appreciate you help

in this, I am writing my list before reconsidering PICC again and going to

ask them if they can provide the actigal with it ect.

**edited city of Lyme specialist**

[ 08-27-2016, 12:49 AM: Message edited by: Lymetoo ]
 
Posted by Keebler (Member # 12673) on :
 
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There is no hospital that treats lyme beyond what she has been offered right now - and most would likely not offer her as much as she is being offered now. The current ID doctor she has is about as good as it's going to get.

Medicare will not cover IV antibiotics beyond 30 days for lyme.
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Posted by Keebler (Member # 12673) on :
 
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She should be assessed for other tick borne infections such as BABESIA (as antibiotics don't touch that, different kinds of Rx required).

Bartonella also comes to mind with her feet.

Ehrlichia should be considered, too. If she has other infections, more comprehensive treatment might be possible. Still, most regular tests for coinfections can miss them and there are various strains of each. But hope they can do what they can.
-
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Posted by JD112 (Member # 43247) on :
 
Worst case scenario. If things decline in her

health starting picc line, can picc line be

stopped and she will recoup and stabilized ?

or does it go down hill from there? My fear is

starting picc line and a coma and shortly death

follow with no way to intervene based on her BP

being low yesterday morning. i dont know to

relate that to the flexerl or the Rocephin.
 
Posted by Keebler (Member # 12673) on :
 
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Connect with the local lyme support group. Good luck.
-
 
Posted by JD112 (Member # 43247) on :
 
Her old LLMD treated her for Bartonella as well as

babesia which he believe she has basked on a lot of

symptoms.
 
Posted by Keebler (Member # 12673) on :
 
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PICC line should go in easily -- they should have her on an image machine to see it being placed, though.

AS you say she has seen marked improvement in five days on IV rocephin, there is no reason to think she would crash during PICC line placement and continued IV . . . as long the support methods get in place.

The most careful time would be when the prescription runs out. But there are some decent herbals that might help prevent a crash.
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Posted by Keebler (Member # 12673) on :
 
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"Her old LLMD treated her for Bartonella as well as babesia which he believe she has basked on a lot of symptoms"

I do not know what "basked" means. But both babesia and bartonella can take many months, even years to address. Treatment may not have been enough and either / both could be adding to complications now.

Be sure the ID doctor knows these have been diagnosed in her in the past and they could still be involved.
-
 
Posted by JD112 (Member # 43247) on :
 
Keebler, I want to thank you again for your

guidance. I am so scared to lose my one and only

sister in the process. I just want to do what is

best for her. I worry like you said at the end

of the four week mark how to continue it. The doc

has her on 1 Gram as opposed to 2grams. Not sure

why but I am hoping it was to test and see if

she could handle it. Come 8am I will be ready to

face the docs to ask exactly what is ordered in

the treatment because I don't even know if

Actigal is added to it.


Any thoughts to cause of low bp???
 
Posted by JD112 (Member # 43247) on :
 
Correction* Based not basked oops sorry.

ID is aware of Bartonella based on our report alone

saying her feet were hot on fire and arms as well.

They said "Mmmhhmmm yup exactly" when we said we

believe it is Bartonella acting out. They also did

warn us that no one else like you mentioned would

go this far for her. It is unlikely.
 
Posted by Keebler (Member # 12673) on :
 
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Low bp is likely due to both adrenal dysfunction that goes with lyme / TBD and the various nervous system dysfunctions.

I am not a medical person, I cannot give any medical advice. Please do not take my words as advice . . . just what I've learned along the way that I hope will help.

The gallbladder protective Rx might not be added to IV, it may be pills. There are two names (maybe more) of this medicine.

Many with lyme loose their gallbladders in emergency if this is not on board with rocephin. In many cases, emergency gallbladder surgery can be prevented with the proper Rx on for the ride.
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Posted by Keebler (Member # 12673) on :
 
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Google: actigal, IV rocephin, lyme
 
Posted by Keebler (Member # 12673) on :
 
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It's 4 a.m. where you are. If you are driving later this morning, just get into bed and get some rest for yourself.

There is no point to wearing yourself out now. Let it go for now and take care of yourself.
--
 
Posted by JD112 (Member # 43247) on :
 
Thank you Keebler. You are Godsent!!! God Bless!!

Researching actively right now. My poor

sister...she has had it very hard. Her husband

walk out on her young. Remarried and had a child

and

husband walked out on her and child and hit with

disease, since she was young has been

continuously sick. No normal life ever at any

point. Her daughter knows nothing of a healthy

mother. I hope this helps her out of it since she

is a neuro lyme case.

We've been trying for years to pull her out.
 
Posted by JD112 (Member # 43247) on :
 
N.Y. at home researching for the AM doctors to pull

out my list of "requirements" before picc

insertion such as actigal if it isn't on the list

and getting meds ready for liver support. I will

try to rest. Need to get up soon however to drive

up to see her. TY SO much. Gnite lol be on in a

couple of hours again.
 
Posted by Keebler (Member # 12673) on :
 
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If you need to double space each line for your eyes, continue to do so. However, if not, single spacing is just fine . . . just not long paragraphs.

3-4 lines max with space breaks in between are easiest for most here . . . and then you'll likely get more readers & replies. Or a break for every new thought. Yet, do what you need to for YOUR eyes if that is why you single space.
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Posted by Keebler (Member # 12673) on :
 
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The lower dose of IV rocephin might be all the doctor is "allowed" to do . . . it may be that as she improves, it could go up. For now, I'm not so concerned as too high a dose from the start could be too much for her body to handle.

As babesia is in her mix, be sure they monitor her spleen function.


Important to know if in a hospital setting:

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

C difficile - prevention
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Posted by Keebler (Member # 12673) on :
 
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Hope you can get someone else to drive you today. Or take a taxi if possible. For your safety and that of others on the road, too. It would be best for your brain not to deal with driving after pulling a near all-nighter.

Or conjure up this smooth ride:

https://www.thehunt.com/finds/ywBoJe-blue-wave-cloud-rider-rainbow-unicorn-inflatable-ride-on-pool-float

Blue Wave Cloud Rider
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Posted by Keebler (Member # 12673) on :
 
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http://www.empirestatelymediseaseassociation.org/ContactUs.htm

Empire State Lyme Disease Association - Contact

Email: [email protected]

Phone: 631-878-6657


See other links there, too.
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Posted by Keebler (Member # 12673) on :
 
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You say that her " daughter knows nothing of a healthy mother . . . ."

There are many ways your sister IS healthy. I don't know the age of her daughter but you can help her daughter see just how strong her mom is in the ways that really matter.

No one is guaranteed health. We hold up this image of what we all think we should be, should have been . . . .

Make sure to reinforce to her daughter the strength, persistence, love and other health-of-soul characteristics of your sister.
-
 
Posted by JD112 (Member # 43247) on :
 
Thank you Keebler. We are currently trying to get her a transfer because the hospital staff has let
us know they cannot help her. They are rude and so we asked to be transferred to Westchester NY.

Her breathing was shallow today..I assume from babesia but now is normal again. She keeps falling asleep randomly however during eating ect. I dont know if this is good or bad and the doctors here are not specialized either so hoping for a transfer.
 
Posted by JD112 (Member # 43247) on :
 
lol@Smooth ride. Very cute except I will need a paddle to go up the rivers here lol.

Yes we all got some needed rest and are ready to go. We appreciate your concern.
 
Posted by JD112 (Member # 43247) on :
 
She is 34, was struck with the disease at 20 when her daughter was born.

We let her know. I hope so much to pull her out of this, I dont know what more I can say. I
 
Posted by Keebler (Member # 12673) on :
 
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"She keeps falling asleep randomly"

this is normal for lyme or any infection, really. Just let her sleep when this happens. It can be very hard to try to stay awake or alert for others. Let her know it's the right thing to listen to what her body needs and go with it.


As for moving her to a different hospital, the ID doctor has there sounds like he is as helpful as possible. Staff at the next place might not be a dream team. Be sure you have talked with several lyme patients who know that hospital and what to expect.

The cost of transfers, etc. can also really add up and some things may be her total responsibility. That is to keep in mind, too.

Nurses / other staff are very stressed. Sometimes the best way do deal with rudeness is an understanding smile (but only if that can be real). Of course, this is not to condone verbal mistreatments yet be careful not to over interpret, stay focused on the task at hand: how to get her home ASAP.

Your state lyme support group is linked a few posts above. They may be able to help with the politics of venue.
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Posted by JD112 (Member # 43247) on :
 
Thank you keebler. I tried contacting them. Awaiting and answer. We asked if protocol included the Actigal and of course..no.

So that seems to speak numbers to us as to possibly not the best treatment for her? I will jump on here in about an hour, have to go talk with Drs. now and see what they can do. They wants us OUT.


What a terrible slam in the face and it makes me nervous because the IV and we need to figure it out soon.
 
Posted by Keebler (Member # 12673) on :
 
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http://www.ncbi.nlm.nih.gov/pubmed/?term=rocephin,%20gallbladder

PubMed search of medical literature

Rocephin, Gallbladder - 86 abstracts


http://www.ncbi.nlm.nih.gov/pubmed/?term=rocephin%2C+biliary+pseudolithiasis

rocephin, biliary pseudolithiasis - 56 abstracts

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2937325/

Indian J Pharmacol. 2010 Jun; 42(3): 193–194.

Biliary pseudolithiasis secondary to ceftriaxone therapy

Excerpt:

. . . As this antibiotic becomes more commonly prescribed, practitioners should be aware of the potential adverse-effects of the drug, especially if the adverse-event can lead to medically inappropriate interventions.

We herein report nine cases of biliary pseudolithiasis secondary to ceftriaxone therapy seen at our institution.

There were nine children admitted between January to October 2009 who developed biliary pseudolithiasis after starting ceftriaxone therapy. . . .

Google: "biliary pseudolithiasis"

https://en.wikipedia.org/wiki/Biliary_pseudolithiasis

(With Wikepedia as just a place to start)

Biliary pseudolithiasis refers to an unusual complication of ceftriaxone where the drug complexes with calcium and mimics gallstones.[1][2]

It is reversed when ceftriaxone administration is stopped.[2] It was first described in 1988 by Schaad et al. as "reversible ceftriaxone-associated biliary pseudolithiasis".[2]
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Posted by Keebler (Member # 12673) on :
 
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http://lymemd.blogspot.com/2008/06/lyme-and-gallbladder.html

Lyme and the gallbladder

By LymeMD Blogpost - June 26, 2008

This an area of Lyme medicine which deserves more attention. Many Lyme patients end up with removal of the gallbladder.

Lyme can infect the wall of the gallbladder and cause chronic inflammation.
This appears to happen with increased frequency when there is also evidence of Salmonella infection.

In the past most gallbladder disease was related to gall stones. There has been a change. Most patients with gallbladder disease no longer have stones; they have chronic inflammation of the gallbladder.

Patients with gallbladder disease have recurrent bouts of abdominal pain which starts out mild but gradually builds up to severe pain. The pain may be located in the right upper abdomen or be generalized to the entire abdomen. Nausea and vomiting may occur.

In the past doctors have ordered a sonogram to evaluated the gallbladder. When the problem is related to infection this test will be normal.

The diagnosis is made with a nuclear medicine scan called a HIDA scan, with the administration of a hormone called CCK.

The hormone injection will likely cause the symptoms to recur and the test will showed a low ejection fraction, indicating abnormal functioning of the gallbladder.

Generally, successful treatment requires removal of the gallbladder which can be done with a minimally invasive laparoscope.

The fact that intravenous Rocephin is known to cause gallbladder attacks may suggest that this is a sort of Herxheimer reaction involving a gallbladder which is already infected with Lyme bacteria.

[13 reader comments follow]

The first comment asks a question relative to yours, about if Ursodiol / Actigall is necessary.

For a balance of view, see the author's comment, 2nd down:

Lyme report: Montgomery County, MD said...

Excerpt:

. . . There is no scientific basis for the use of Actigall for an infected gallbladder. Actigall has been used at times to dissolve gallstones, but is marginally effective.

A well know Lyme MD had her gallbadder removed and a lab was able to prove Lyme (Borrelia) in the GB wall by PCR. I don't think Bartonella is an issue. Salmonella is a hardy germ with a thick cell wall that burrows into the gut wall.

It also has a liking for the GB wall. Over and over I have found that Lyme/Gallbladder patients also have high antibodies to Salmonella. . . . [comment contiues on site]

--
About the author, at the site, you can learn more. This author has, over the years, been consistent in his deep appreciation and knowledge of complex lyme & other tick borne disease issues. He may differ on some points from some ILADS "LLMDs" - and they differ among themselves on some points, too.

So, I add his thoughts for balance. He most certainly knows a great deal about the matters. Also of note, this was written in 2008 so I'm not sure of any notes since.

Samonella seems a reasonable thing to test for, though, and that might indicate more about your sister's chances at gallbladder issues.
-

[ 08-25-2016, 04:00 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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Going back to Tincup's reply, there are some valid points there. Be sure to go back to that and consider it in the range of thinking points.

I based my thought that a PICC line and continued rocephin might be good based on your stated, in 5 days, it has helped so much.

There are so many nuances to treatment, to say the least. And when presented with an urgent situation, it can be too pressing to learn all required to consider everything with proper weight.
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Posted by Keebler (Member # 12673) on :
 
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Diet? Is she gluten free? And, if so, is the hospital honoring that? This could be very important in many ways, starting with inflammation.

Same, too, with diet, to be free of all food additives, even (especially) in hospital.
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Posted by Keebler (Member # 12673) on :
 
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Gluten & inflammation discussed here - and why artificial sweeteners, etc. can be so irritation to nerve fibers and function.

As the gallbladder / the whole body really has so much inflammation to manage, everything we can do to help minimize that matters.

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

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).


http://drdavidbrownstein.blogspot.com/2011/07/why-my-mother-refused-to-eat-hospital.html

Friday, July 22, 2011

WHY MY MOTHER REFUSED TO EAT HOSPITAL FOOD

- By Dr. David Brownstein
-
 
Posted by Keebler (Member # 12673) on :
 
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Not to explore this minute, obviously, yet you might want to go ahead and order the main book and get it on its way to you / your sister.

http://buhnerhealinglyme.com/

Master Herbalist Stephen Harrod Buhner [who, we all who have read his books know to be extremely lyme & TBD literate)

Q & A

Scroll down for books and this one might be a good start to "how else" for your sister's next step. Even if one is not interested in herbs at all, these books are so important for detail regarding lyme / TBD and the way they work.

http://astore.amazon.com/healinglyme-20/detail/0970869649

Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsiosis, 2nd Edition

By Stephen Harrod Buhner - 520 pages - 2015


& for consideration:

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

RIFE Machine - Reference LINKS
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Posted by JD112 (Member # 43247) on :
 
"Diet? Is she gluten free? And, if so, is the hospital honoring that? "


Sorry Keebler.I was not able to make it on when I said I would. There was a 10 car crash on the highway thankfully I was not involved. Also in the hospital I did read what you wrote but since forgot my password and was not able to login so easily with mobile data slow to respond.


I told my mother who is currently with her to keep her pretty much plant based and gluten free for now and she said she will speak to the dietician in the AM to change it. My sister got another IV rocephin again today and so my mother and I stepped out for a bit to find out she had been crying for my mother like a baby because she was in pain in the legs. The crying is new as well so we wonder if the rocephin is in relation to it maybe coming to in a sense???


The ID doctor explained to us about the PICC and keeping her in her care because if improvements are made "we can go from there". The docs will be adding a Neurologist in the picture as well for therapy options. I hope all goes well and am investigating Buhner for the next punch.
 
Posted by Keebler (Member # 12673) on :
 
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Crying? It is all about the pain, inflammation and likely irritated nerve endings. And she may be feeling much sicker than usual, even if better in some ways.

Massage and magnesium & liver support to manage herxheimer are the best helpers. Refer back to the Liver support link. Working with the hospital can be tricky but they may work with her on

NAC, glutathione and magnesium.

Acupuncture may be available at some hospitals, too. And (depending upon the state) medicare and Medicaid often cover acupuncture for pain management. Some hospitals have acupuncturists on staff, often in the cancer departments.


Plant based? Definition here can vary. A plant based diet could mean just a lot of good vegetable and low sugar dark fruits along with meats, fish, eggs but that the plants are the majority of the meals.

Three eggs is a good start for the day, providing 18 grams of protein - along with a vegetable and a dark low sugar fruit, maybe some amaranth or buckwheat groats.

But if you mean only plants for food, Not sure why that would be unless she is vegan already. I could not survive a vegetarian diet and I gave it years. I get very ill & weak if I don't get eggs, chicken, beef, fish.

Buhner states that muscle meats are required in order to get better. Cleaner sources are best, of course.

Some may do okay with just plant based diet but let her decide what her body is telling her in that regard.

In a hospital, a vegetarian diet is likely to include a ton of gluten as they are often the "glue" in "meat like" entrees.
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[ 08-26-2016, 03:07 AM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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http://icmr.nic.in/ijmr/2006/august/0804.pdf

THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .

Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.

Excerpt:

" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."


- 20 pages - Full article at link (or web search the title if it does not go through).
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Posted by JD112 (Member # 43247) on :
 
"Crying? It is all about the pain, inflammation and likely irritated nerve endings. And she may be feeling much sicker than usual, even if better in some ways."


Yes she says "This thing is killing me!" as in the disease eating her up with the pains. We ask her, where and what does it feel like. She says in the knees and wrists and that it feels like tearing and ripping mixed with Indian burns.


"Massage and magnesium & liver support to manage herxheimer are the best helpers. Refer back to the Liver support link. Working with the hospital can be tricky but they may work with her on NAC, glutathione and magnesium."


We brought this to their attention and asked if she will be monitored even for spleen function and they nodded yet. I believe they are trying to not say to much because of the other people around.


"Acupuncture may be available at some hospitals, too. And (depending upon the state) medicare and Medicaid often cover acupuncture for pain management. Some hospitals have acupuncturists on staff, often in the cancer departments."


The ID did recommend Acupuncture and we will be ordering to speak to a pain management. Was thinking to even ask for cannibus oil from the dispensary if they will allow it and if it does help?????


"Plant based? Definition here can vary. A plant based diet could mean just a lot of good vegetable and low sugar dark fruits along with meats, fish, eggs but that the plants are the majority of the meals.

Three eggs is a good start for the day, providing 18 grams of protein - along with a vegetable and a dark low sugar fruit, maybe some amaranth or buckwheat groats.

But if you mean only plants for food, Not sure why that would be unless she is vegan already. I could not survive a vegetarian diet and I gave it years. I get very ill & weak if I don't get eggs, chicken, beef, fish."


Thank you for this. I am going to hand this exact plan you wrote here to the dietician because she did have concerns for the vegetarian like diet due to her needing proteins.


"Buhner states that muscle meats are required in order to get better. Cleaner sources are best, of course.

Some may do okay with just plant based diet but let her decide what her body is telling her in that regard.

In a hospital, a vegetarian diet is likely to include a ton of gluten as they are often the "glue" in "meat like" entrees."


This makes so much sense. I did not realize the hospital in a sense cannot honor their meal ingredients. Ive been reading into Buhner and I really like his state of mind. I ordered the knotweed as well as the others I had on hand thank God.

One thing for sure is she is sleeping better but with the evil spasms that have continues since 2000 nightly and religiously. They always come at night. Does anyone else suffer the early AM hours till day break with these spasms?

No stomach issues or headaches YET- and I think bartonella might be in hiding because the hot feet have not returned yesterday. We will see tonite though however. I hope her story and this timeline of her treatment helps anyone out there who might need it. We often look for Lyme stories together and I read them to her for encouragement.
 
Posted by Keebler (Member # 12673) on :
 
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Turmeric capsules -- and turmeric in foods. It's great in lentil soups, cauliflower, etc.

Turmeric and it's stronger extract, curcumin, are helpful to relieve some pain. However, curcumin can be too strong for tender gallbladders so I would have her avoid that right now while on rocephin.

Turmeric, starting with food use, and them maybe working up to a capsule in the middle of a meal might be good.

From: The One Earth Herbal Sourcebook (Tillotson, et.al.)

http://oneearthherbs.squarespace.com/important-herbs/turmeric-root-curcuma-longa.html

TURMERIC ROOT (Curcuma longa)

Excerpt:

. . . SAFETY ISSUES: Due to mucin-reducing effects, do not use the concentrated extract (curcumin) or oil in high doses, especially if you have bile duct obstruction, gall stones, or stomach ulcers. Use turmeric as a spice freely. . . .
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Posted by JD112 (Member # 43247) on :
 
How about Turmeric Tea????
 
Posted by JD112 (Member # 43247) on :
 
As well as Planetary Herbals Brand called Stone Free.
 
Posted by Keebler (Member # 12673) on :
 
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IMO, though others may think differently:

Turmeric does not really work as a tea and to mix the powder in water tastes horrid. I can barely slosh that down and not barf it back up. And it can irritate the mouth & lips, also a choking risk as it's hard to mix in water and not get powder stuck in throat as drinking.

I've done it but I've learned to be very quick with the "wash it down water" - but it sits better with food in stomach, not alone.

I do not recommend it as a "tea" at all. Put in food or get capsules. It's perfectly delicious in a prepared meal. You can stir in after the food is prepared if you can't put it in when cooking.

But for many culinary herbs & spices, it's important to have them first "toasted" in the skillet before adding food to cook. Chefs / websites for Indian cuisine show how. Turmeric tastes so much better this way.
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Posted by Keebler (Member # 12673) on :
 
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JD's suggestion for "Planetary Herbals Brand called Stone Free."

Didn't want to have that overlooked. That is an excellent brand.
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Posted by JD112 (Member # 43247) on :
 
Awesome!! awesome! Excited to try these two herbs out!!

"Turmeric does not really work as a tea and to mix the powder in water tastes horrid. I can barely slosh that down and not barf it back up. And it can irritate the mouth & lips, also a choking risk as it's hard to mix in water and not get powder stuck in throat as drinking."

And yes that does sound Horrible. We will be grabbing spice. Keep you posted!
 
Posted by Keebler (Member # 12673) on :
 
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Be sure of the source of turmeric. Some can contain lead when grown in certain locales. Be sure of the brand and their quality.
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Posted by Keebler (Member # 12673) on :
 
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As for "Stone Free" I have studied this at length and have a ton of links / excepts but they are not collected into a handy links set. For now, here's a start:

http://www.herballegacy.com/Thomas_Medicinal.html

CHANCA PIEDRA

by Melody Elaine Thomas
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Posted by Keebler (Member # 12673) on :
 
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JD:

First, delighted that your sister's MD suggested acupuncture as a comfort tool. Hope that works out.

I can get carried away with enthusiasm for herbs. Just want to be very clear that while your sister is in hospital, certain supplements must be considered very carefully and

everything must be in consult with her doctor. There are things at work here that we can't know. And since many herbs have various properties, they can undermine and even interfere with some pharmaceuticals.

A meal with turmeric may work out nicely as many herbs are food. But when we get to the therapeutic dose of something, that's a different matter.

Usually, though, a light tea is not anywhere near a high as a therapeutic dose and can still be soothing to the patient. Yet, depending on what it is, even an herbal tea could interfere in some ways.

Also be mindful that most doctors may not be aware or comfortable or ABLE to include certain supplements. Some maybe; most probably not. In all fairness, it's not been any focus of their training and they have strict rules they must follow, too.

If herbs are to be explored in the next steps . . . I would hope that she could get a LL ND, for guidance.

What I know some hospitals can and have done: Magnesium; Glutathione; NAC.
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[ 08-26-2016, 05:00 PM: Message edited by: Keebler ]
 
Posted by JD112 (Member # 43247) on :
 
So this is what Ive come down to so far with diet before and during the PICC line Treatment and since she is in a hospital setting:


3 hard boiled eggs every morning along with the best cottage cheese available.


Yogurt and Keifer (organic/grass-fed/live cultures) throughout the day and as much as possible.


Sauerkraut with the available meats at the hospital along with leafy greens and fruits + Water.


3 herbal teas in a day (We will ask Dr.) with ColostrumPRO brand supplement and raw honey as the only source of sweetener right now.


Supplements will include and are to be given FAR AWAY from the IV Treatments so no interference:

Food grade Turmeric
Activated charcoal or "sacred clay"
Milk thistle
Japanese Knot-weed
Stone Free Gall bladder support capsules
Colloidal silver home brewed (been making for years) 1 Cup in AM and PM.
Probiotics.


Due to the delay of the hospital now PICC is scheduled for Monday which we hope gives us time to boost her up immune up fast to be more better prepared.


Question: Shes always kind of spoke slow or slurred- LLMD attributes this to "Mini Strokes" along with the bells palsy that has happened in the past.


Her voice has become kind of slower I noticed and not as strong, almost weak and it worries me. Any thoughts?


She seems mentally at a state where she can remember most recent events and response is good except when she crashes to sleep which is about the majority of the time now.

Almost the whole day she sleeps but I guess its reverse in the wee am hours.

At home prior to bringing her to ER she was awake a lot of the day. Definite changes with IV Rocephin @ 1 Gram but it scares me. The ID doctor is very positive however.

I am on board with you Keebler as far as herbs. We have done alot in the past and fell off the bandwagon. We can vouch for it and the parasite cleanses work amazing. I will google the best available Turmeric in my local stores and thanks for the heads up.
 
Posted by Lymetoo (Member # 743) on :
 
I'm checking out for the night but wanted to give you this link JD .. it's success stories:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/15820?

Also .. please ask them to try IV magnesium for her spasms and cramping.

[group hug]
 
Posted by Keebler (Member # 12673) on :
 
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Questions you have:

1. "Shes always kind of spoke slow or slurred- LLMD attributes this to "Mini Strokes" along with the bells palsy that has happened in the past."


NOT necessarily mini-strokes but could be. More likely, this is absolutely TYPICAL for lyme / TBD really and especially when tired or sensory overloaded. It should get better. Nothing to worry about. Happened / happens to me a lot.

The liver / the body has so much to do it can't be burdened with having to communicate. Rest is best. Low light, quiet is best. Some of this is also due to the adrenal overload and just how hard it is to may neuro connections right now. Speech takes SO VERY MUCH ENERGY. And that energy must go to other functions now.


2. "Her voice has become kind of slower I noticed and not as strong, almost weak and it worries me. Any thoughts?"

ABSOLUTELY normal for lyme / TBD. And there is nothing to worry about as, with treatment, rest, time and nutrition, this should improve.

Also typical for those with inner / middle ear or vertigo issues.


3. "She seems mentally at a state where she can remember most recent events and response is good except when she crashes to sleep which is about the majority of the time now.

Almost the whole day she sleeps but I guess its reverse in the wee am hours. . . ."

ABSOLUTELY typical for lyme / TBD. Adrenal support by days helps and not too much neuro stimulation in evening. She is likely so over tired that her body is just too stimulated to rest properly.

And the hospital is the worst place for proper rest. I hope she can get home soon. Still, even there, the day / night sleep thing will be hard for a few months at the least.
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Posted by Keebler (Member # 12673) on :
 
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I can't really say about the supplements.

About the silver, though, what is your water source? That matters greatly.

And "1 Cup in AM and PM."

is FAR, FAR too much. One teaspoon is the best starting dose, maybe even half that.

Too much silver can cause a dangerous, dangerous herxheimer. Some starts with just a few drops.

But I'm also not at all sure about combining it with IV rocephin. It could be too much for her body to handle. I would wait on the silver until she is off antibiotics altogether. Or maybe a few drops for MOUTH help to offset candida.

I had to start with just drops and silver really laid me low - helped but still a huge clobber at first. Her body could falter with too much thrown at it.


I strongly feel the doctor should okay all on your list as long as she is in the hospital.


Stone Free Gall bladder support capsules can lower blood pressure. As you said she has low blood pressure, that is something to keep in check. Yet, it may also help relax body and not be in as much pain. But I'm not a doctor and don't know about all she is taking as to if it's all in balance.


Still, the doctor has the right to know all that is being supplemented as she is his responsibility right now and if here are interactions, that falls back to him.

IV MAGNESIUM (and maybe glutathione) would cover all the bases, really, for time she is in hospital.

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

Topic: MAGNESIUM - Informational Links set


STEVIA is okay as a sweetener. Raw honey may be too sweet for candida overgrowth while on antibiotics.


Eggs can be prepared a variety of ways. Hard boiled are the least tasty way but a little gluten free mustard and stevia, with a good olive oil can be a sort of deviled egg mash sort of thing. A vegetable is really important with breakfast, too.


I'm not well versed in charcoal but BAMBOO charcoal is best - and timing of this matters. It can bind the bowels, if I recall correctly, and it may take Rx out of body too soon, too.

It nice that you devote so much time and effort to devising a support plan for her and I'm also stuck a bit here because it is so important yet best when guided by a LL ND when at all possible.

If you find an acupuncturist soon for pain relief, they would also know all about herbal supports IF they are actually a licensed acupuncturist and not just an MD who took a weekend course. Some of those are also very interested and have learned some other ways to support just be aware that training varies.
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[ 08-27-2016, 02:48 AM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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"Due to the delay of the hospital now PICC is scheduled for Monday which we hope gives us time to boost her up immune up fast to be more better prepared. "

To "boost" immune support can boomerang. Don't try to boost or go fast. Just keep it even and steady. It is good to be mindful of all that before Monday, of course.

Ideally, it's best to start ONLY ONE THING AT A TIME, and at a VERY LOW DOSE.

The PICC line should be IMAGE guided. Be sure of that. I forget what equipment they use but they should be able to see the whole time where it's going.

Google: PICC line, image guided placement
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[ 08-27-2016, 02:49 AM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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From my file notes:


sixgoofykids
posted 02 September, 2015

chelating heavy metals right now (again) and have started taking Takesumi for detoxification/binding.

It's amazing at binding the toxins. I felt better within a couple days. If you're having trouble detoxing, maybe finding a good binder would help.

http://supremenutritionproducts.com/TakesumiSupreme/index.html

Takesumi Supreme - Bamboo Charcoal

. . . Because of the porous nature of the bamboo, it is an amazing absorber (up to 10x more so than wood treated similarly, according to many sources).

Research from Japan claims it emits far infrared rays (thus improving circulation) as well as negative ions and shields the body from EMF’s. It also is a natural source of minerals (macro and trace) and is reported to be alkalizing. . . .

. . . We are making it available in powder form. Takesumi cannot be encapsulated without adding flowing agents etc. due to its light density etc. It is tasteless and dissolves adequately in water so it is not difficult to take . . .

. . . While there is not much human medical research on the uses of Takesumi, there are studies showing how absorptive it is, and how it can bind up heavy metals.

Studies have shown it to be effective in binding mercury, lead, cadmium, and other heavy metals (1, 2, 3, 4). It has also shown to be effective at binding aflatoxins (5). . . .

. . . Contraindications:

The only possible contra-indication we know of is not to take it if you have been diagnosed with variegate porphyria.

UHHHH ! Why? [I never answered my own question]

Takesumi Supreme
Order by Phone: 1-800-922-1744
E-Mail: [email protected]

Takesumi Supreme Product Support
Send all usage related questions to [email protected]

http://www.coconutoil-online.com/Supreme-Nutrition-Products.html

Takesumi Supreme™ - $26.

Takesumi Supreme™ is packaged in a 60 gram container which contains approximately 120 servings of pure specially carbonized bamboo. A 1/4 teaspoon scoop is included.
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Posted by JD112 (Member # 43247) on :
 
Well all to update anyone following this thread.


Last night when I returned home to rest they had put the PICC line in. I wasn't aware until I came back to the hospital this AM. They did it late at night. I will cease all supplements for now and focus on nutrition at this point to build up her body.


I do want to let EVERYONE who reads this to know the condition she is in that she is starting from.


She is TOTALLY bedridden. No function or motor skills in the hands. The only control she has of her body right now is her head so she can turn to the sides to look at us and eat as well. She can grab but we would need to bring whatever object it is to her to help her grab. She does not use the toilet, she wears diapers. Her eyes are crooked. Her left eye pulls to the left while her other is straight. Her eyes also shake almost all of the time.


She has muscle waste- There is NO muscle on her thighs. She is 5'6 and probably weights about 110lbs. She has other infections along with the LYME/BART/BABS which include Klebsiella and Enterobacter I believe as well as Candida which is apparent by her thick saliva. If anyone might be near death I believe it to be her.


I am keeping this open for anyone in this situation or better to keep positive and to follow us along with the treatment of PICC Rocephin. This is the first time she has ever received it. Prior Meds include FLAGYL DOXY MEPHRON and 1 other I forgot at the moment which NONE worked except Mephron during babesia attacks.


Fingers crossed the Rocephin really is the key to the treatment. I will keep you posted further with updates of Improvements.


So far, lots of sleeping is going on. No hunger. Nightly spasms but the arthritis part of the Lyme for the first time in YEARS her legs are straightening flat out onto the bed. She was twisted prior.


The state of New York is hard to get treatment in and if anyone suffers this battle to get treatment in NY for yourself or loved one you can PM me and I will help you as much as I can to try to get things started.
 
Posted by JD112 (Member # 43247) on :
 
Thank you for the info on BAMBOO Keebler. It totally makes sense. I will be looking into adding this to my nutrition cupboard. I will work on ordering her a MAGNESIUM Bag through the Doctor because I believe she needs it.


Also thank you for easing my mind with the condition she is in. It really scared me when treatment started it looked/looks like she is/was getting weaker to the point of breathlessness. What a scary disease! Those ticks! and now the mosquito's!


PLEASE EVERYONE PROTECT YOURSELF And lets all fight the Good fight. It is a right to receive treatment FIGHT AS HARD AS YOU CAN because in the end these "doctors" are getting paid excellent money at your expense to do nothing and recite prior doctors diagnosis.


MAKE THEM WORK FOR THAT $$$ FROM YOU! and if you feel like they are ignoring you or belittling you and your thoughts you have EVERY right to file a MEDICAL CONDUCT to your department of health.


They WILL INVESTIGATE. Prior to submitting such paper...Do let your doctor know you plan on filling one out so that he can rethink his decisions and take a cellphone or recorder with you for evidence during visits.
 
Posted by Keebler (Member # 12673) on :
 
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Ask the doctor to run a RBC magnesium test to determine her need. Be sure to see detail in the magnesium links set.

Being an informed person in all matters of health is important. However, when a loved one is in hospital it can be a fine line between being a advocate and a pain in the neck to doctors / staff.

It is important to keep in mind the system in place and how to have that work as best it can. Rather than approach it as a fight, consider their parameters, too. Often, finding common ground is key.
-

[ 08-27-2016, 04:01 PM: Message edited by: Keebler ]
 
Posted by JD112 (Member # 43247) on :
 
Ok will ask Monday when all Docs come back from weekend. I went to visit tonight. 1 new symptom has emerged with this PICC Line.

She was sweating up a storm. I couldn't believe it. I touched her to feel for fever but none. Is this a co infection or is this the liver suffering? Thanks
 
Posted by Carol in PA (Member # 5338) on :
 
JD112, I am sorry that your sister is so ill.

The "burning" pain in arms and legs may be neuropathy.
B-complex vitamins helped my neuropathy, as did B12 sublingual.

Garden of Life is my favorite brand of B complex vitamins, as I don't get a stomach ache with that one.


From what I understand, a blood test for magnesium shows the amount of magnesium in the blood cells, not the muscle and nerves.
The Lyme bacteria live in the muscle and nerve cells, using up the magnesium there and causing twitching and spasms.

It was my understanding that the "right" test for magnesium involved an inner cheek swab, however there may be new info in the last couple years.

Intravenous magnesium is commonly given to women who develop a condition called pre-eclampsia before they are about to give birth.
So if your doctor is wondering about doing this, he could consult with an Obstetrical doctor.


Magnesium would be a good support for the liver, which needs it to make glutathione to detoxify the poisons left by dead Lyme bacteria.
NAC, n-acetyl cysteine, is excellent liver support, and is also used in cases of acetaminophen overdose.


If your sister starts all these supplements at once, there may be a problem.
I know that when I tried turmeric, I got loose stools.
Milk thistle also gave me loose stools.
Later, when I tried charcoal, one dose "stopped me up" for 3 days. [Frown]
 
Posted by Catgirl (Member # 31149) on :
 
I haven't read all the posts above but vitamins and minerals are an issue for lyme patients. Lyme sucks them out of people.

I just saw Carol's post, B vitamins are depleted with lyme patients. Also vitamin D big time. Get her on some D. Also selenium and zinc are so important. A good mineral supplement would help. If she has a lyme doc she might already be on these though.

Here is a great product for magnesium:

https://www.amazon.com/Ancient-Minerals-Magnesium-Lotion-Bottle/dp/B0079QHN0S/ref=sr_1_2_a_it?ie=UTF8&qid=1472405443&sr=8-2&keywords=magnesium+lotion

I think your sister would benefit from some reiki too. Some nurses are trained to give it in hospitals. Reiki and acupuncture are both wonderfully supportive.
 
Posted by JD112 (Member # 43247) on :
 
Thank you for the link Catgirl. I ordered the Magnesium. I never knew such a thing existed. This is pretty cool and cant wait to try it on her.

My mom asked me if she should give her Vitamin D but I was unsure to give her an answer. I will now tell her to go ahead. At what MG do you recommend?

Will look into those other Vitamins. I have so many pill bottles I wish there was an easy magic pill.

Will this lotion replenish the magnesium that you are talking about Carol in PA?

The "burning" pain in arms and legs may be neuropathy.
B-complex vitamins helped my neuropathy, as did B12 sublingual.


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.


UPDATE:

She said she feels in pain all over now. Her pain is usually confined to the legs and arm and knees but seems to have spread. She said it feels "sharp"?? She was in a lot of pain last night. I am awaiting a phone call from our mom to get an update on her condition.
 
Posted by Catgirl (Member # 31149) on :
 
You're welcome! Yeah, that lotion works fast for me. I take 25k of vitamin D, but some people take 5 or 10k per day.

There is another product you might want to check out. It has lots of good stuff in it (Nerve Shield). Another poster: Bugg raved about it. Check out her thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=134040;p=0#000006

https://www.amazon.com/Redd-Remedies-Nerve-Shield-Addresses/dp/B004YR0CIK
 
Posted by bluelyme (Member # 47170) on :
 
Prayers for you and your sister ..you can get a doc to order more rocephin and change dressing on picc line buy it will be all out of pocket ...home health care will not be cheap...dave martz stopped his muscle wasting with 4g of rocephin..i am trying 2 grams with other modalities .....ask if id doc will order a port put in for ivig or abx ...it can go longer in between flushes ..you are a amazing sister ...
 
Posted by Carol in PA (Member # 5338) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by bluelyme (Member # 47170) on :
 
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
 
Posted by Catgirl (Member # 31149) on :
 
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".
 
Posted by JD112 (Member # 43247) on :
 
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?
 
Posted by hopingandpraying (Member # 9256) on :
 
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
 
Posted by hopingandpraying (Member # 9256) on :
 
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!
 
Posted by Catgirl (Member # 31149) on :
 
Private home health care is about 15k a month. Not sure about private hospice.
 
Posted by susank (Member # 22150) on :
 
Have you posted somewhere here her Igenex results?
If not - could you?
IGG and IGM bands; "-" "+" and "IND"?
 
Posted by Lymetoo (Member # 743) on :
 
Catgirl .. that would be with 24 hr care, right?
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by Catgirl (Member # 31149) on :
 
Yes, 24 hour care.
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
In hospital. We submitted another Qio appeal. They are enraged with us. Waiting for doctor to come in. So far an hour waiting.
 
Posted by Keebler (Member # 12673) on :
 
-
See if you can find a patient advocacy office at the hospital. Most have them.
-
 
Posted by Lymetoo (Member # 743) on :
 
It's so sad that she is so very ill.

God bless all of you.

[group hug]

Keep fighting!
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by TF (Member # 14183) on :
 
I am praying!
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by Lymetoo (Member # 743) on :
 
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.
 
Posted by Catgirl (Member # 31149) on :
 
I would rub that lotion on her calves.
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by Lymetoo (Member # 743) on :
 
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.
 
Posted by Lymetoo (Member # 743) on :
 
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
 
Posted by Carol in PA (Member # 5338) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by TF (Member # 14183) on :
 
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!
 
Posted by Lymetoo (Member # 743) on :
 
Amen.
 
Posted by Lymetoo (Member # 743) on :
 
"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)
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
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!
 
Posted by Lymetoo (Member # 743) on :
 
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!
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by Keebler (Member # 12673) on :
 
-
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
-
 
Posted by Keebler (Member # 12673) on :
 
-
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.
-

[ 09-03-2016, 07:57 PM: Message edited by: Keebler ]
 
Posted by Lymetoo (Member # 743) on :
 
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]
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
No ,no vaccines. We tell the docs no and we refuse. Of course it stirs up tension.
 
Posted by bluelyme (Member # 47170) on :
 
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
 
Posted by bluelyme (Member # 47170) on :
 
https://archive.org/details/scm-470173-undertheeightball1of2

https://archive.org/details/scm-470175-undertheeightballpart2of2
 
Posted by Keebler (Member # 12673) on :
 
-
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.
-
 
Posted by Keebler (Member # 12673) on :
 
-
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
-
 
Posted by Keebler (Member # 12673) on :
 
-
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]
-
 
Posted by bluelyme (Member # 47170) on :
 
http://www.shackel.org/lyme.html
 
Posted by Keebler (Member # 12673) on :
 
-
bluelyme,

Thanks for that great link you just posted for

Lyme Disease Induced Neurodegeneration - Neuroborreliosis
-
 
Posted by Keebler (Member # 12673) on :
 
-
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
-
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by Keebler (Member # 12673) on :
 
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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.
-

[ 09-04-2016, 08:07 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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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.
-
 
Posted by Keebler (Member # 12673) on :
 
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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:
-

[ 09-04-2016, 09:55 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
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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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Posted by Lymetoo (Member # 743) on :
 
I can vouch for ReMag and ReMyte!
 
Posted by dogmom2 (Member # 23822) on :
 
I wonder if Bea seibert might have some advice since she went thru so much with the hospital with her husband.
 
Posted by Carol in PA (Member # 5338) on :
 
dogmom2, that's what I was thinking too.

I haven't seen her around here for a while, but I can email her.
 
Posted by bluelyme (Member # 47170) on :
 
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
 
Posted by hopingandpraying (Member # 9256) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by dogmom2 (Member # 23822) on :
 
JD112 on this site bea seibert posted under seibertneurolyme.
 
Posted by Keebler (Member # 12673) on :
 
-
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.
-
 
Posted by Keebler (Member # 12673) on :
 
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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.
-

[ 09-08-2016, 05:08 PM: Message edited by: Keebler ]
 
Posted by Keebler (Member # 12673) on :
 
-
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
-
 
Posted by Keebler (Member # 12673) on :
 
-
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. . . . "
-
 
Posted by Keebler (Member # 12673) on :
 
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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
-
 
Posted by Keebler (Member # 12673) on :
 
-
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
-
 
Posted by JD112 (Member # 43247) on :
 
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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It also say IFA, B BURGDORGERI G/M/A/ 40 Equivocal
 
Posted by JD112 (Member # 43247) on :
 
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.
 
Posted by Keebler (Member # 12673) on :
 
-
" . . . 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 ]
 
Posted by Keebler (Member # 12673) on :
 
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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 ]
 
Posted by Lymetoo (Member # 743) on :
 
I hope she can get some rest now. We'll keep praying for all of you.

[group hug]
 
Posted by bluelyme (Member # 47170) on :
 
Keep us posted ...get her on some treatment if you can ..does she still have picc?dobyou see a llmd
 


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