posted
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 ]
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Tincup
Honored Contributor (10K+ posts)
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posted
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?
posted
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 ]
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Keebler
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posted
- 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.
posted
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 ]
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Keebler
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posted
- 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. -
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posted
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.
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Keebler
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posted
- 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
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?
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posted
She hasn't walked in the last 3 years after a 3 day steroid infusion on the first day being treated for multiple sclerosis.
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Keebler
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posted
- 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. -
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posted
Im sorry, not facility. I meant to a llmd.
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Keebler
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posted
- 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. -
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Keebler
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posted
- 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 . . . . -
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posted
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 ]
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Keebler
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posted
- 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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Keebler
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posted
- 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
Her old LLMD treated her for Bartonella as well as
babesia which he believe she has basked on a lot of
symptoms.
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Keebler
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posted
- 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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Keebler
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posted
- "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. -
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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.
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Keebler
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posted
- 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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Keebler
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posted
- Google: actigal, IV rocephin, lyme
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Keebler
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posted
- 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. --
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posted
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.
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Keebler
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posted
- 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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Keebler
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posted
- 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.
C difficile - prevention -
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Keebler
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posted
- 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.
See other links there, too. -
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Keebler
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posted
- 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. -
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posted
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.
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posted
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
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Keebler
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posted
- "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
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.
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Keebler
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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. . . .
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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Keebler
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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 ]
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Keebler
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posted
- 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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Keebler
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posted
- 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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Keebler
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posted
- 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.
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.
posted
"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.
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Keebler
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posted
- 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. -
[ 08-26-2016, 03:07 AM: Message edited by: Keebler ]
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Keebler
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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. . . ."
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