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. . . ."
- 20 pages - Full article at link (or web search the title if it does not go through). -
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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."
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.
Posts: 80 | From NY | Registered: Feb 2014
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Keebler
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posted
- 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.)
. . . 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
As well as Planetary Herbals Brand called Stone Free.
Posts: 80 | From NY | Registered: Feb 2014
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Keebler
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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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Keebler
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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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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!
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Keebler
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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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Keebler
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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:
by Melody Elaine Thomas -
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Keebler
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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. -
[ 08-26-2016, 05:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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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.
Posts: 80 | From NY | Registered: Feb 2014
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Also .. please ask them to try IV magnesium for her spasms and cramping.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- 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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Keebler
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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.
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. -
[ 08-27-2016, 02:48 AM: Message edited by: Keebler ]
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Keebler
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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 -
[ 08-27-2016, 02:49 AM: Message edited by: Keebler ]
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Keebler
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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.
. . . 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]
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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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.
Posts: 80 | From NY | Registered: Feb 2014
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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.
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Keebler
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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 ]
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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
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Carol in PA
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posted
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. Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Catgirl
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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.
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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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.
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Catgirl
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posted
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:
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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bluelyme
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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 ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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