Topic: Friend is in the hospital with guillain barre
Judie
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posted
This friend is always going into tick-infested places.
He's paralyzed right now.
The neurologist says it can't be Lyme but put him on IV antibiotics for 4 days to take care of of IF there's an infection.
He's doing a bit better and it's been less than a day on IV.
Is there anything I can send him about the Lyme controversy?***
***Edit Update: I've decided to focus on him getting a second opinion, instead of controversy. I now know of 3 confirmed cases where the person was originally diagnosed with GB, and later found out it was caused by Lyme***
I was told he has a lot of time to read right now.
I think it's something he needs to get evaluated for just to rule it in or out. I don't think the neurologist in the hospital is willing to admit if it is Lyme.
I'm sending these so far (I figured I'd post, maybe others will find the info useful):
randibear
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posted
my husband's friend's daughter is now in a wheelchair but at home. she was also diagnosed with gb.
I tried to talk to them but got the ole "doctors know what they've doing and they're doing all the tests. oh thank you but you really don't know what you're talking about" routine.
so I shut up. if people won't listen, well, you know what, any more I just don't care.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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- Can you say which state? As that can make a big difference in how the doctors may receive this information. I just really hope it's not in Oregon. No chance there with any hospital doctors or specialists.
Wish someone could slip a rife machine in to him, under cover (only half jokingly).
Friends / family at hand to help? That might also matter in some of the replies if he needs someone to do either talking, researcher or administering something (else?) to him. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
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posted
I'm in California. He's in an area with no Lyme doctors at all.
I live a couple hours away, but I told my husband we should just pick him up and take him to a doc by us anyway just to be evaluated.
My husband is already overwhelmed by me having Lyme. This is getting complicated.
I talked to the friend over the phone the night before he went to the hospital because he had just got diagnosed with peripheral neuropathy (one of my early symptoms).
I tried to tell him about the Lyme issues, but I have no idea how it landed.
Randibear - Yes. I remember the friend! That's terrible that she's in a wheelchair.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Dr. H, the top LLMD, mentions GB Syndrome in his book, "Why Can't I Get Better?", on page 122.
"Q fever is another rickettsial infection; it's caused by Coxiella burnetti. Coxiella can present as Guillian-Barre Syndrome (GBS)."
You wrote, "He's doing a bit better and it's been less than a day on IV." Obviously, he has an infection and the abx are working. Is he still paralyzed?
You are a good friend and correct that he needs to be evaluated by a LLMD instead of wasting his time with someone who won't do anything.
Is he in CA? If so, I would pm "Robin123" and ask for LLMD info where he specifically is. She is the resident expert on CA.
I pray he is not in Oregon where there are none and the environment is very hostile to Lyme patients, as poster Keebler has noted time and time again!
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Keebler
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posted
- hopingandpraying,
Yes, he is in California, same state but a couple hours away from Judie. (saving time so Judie doesn't have to answer this)
(Judie replied to that same question I had, as so much can matter depending on the state. But, Judie says there are no LL doctors near him so no one to have an "in" with hospitals staff there.) -
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Keebler
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Contact Us -
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Judie
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posted
Thanks Keebler. I'm overwhelmed with my own stuff, but very passionate about helping my friend too.
I'm trying to find out if he has access to email so I can send him (or a family member) info.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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posted
- You say he is paralyzed. Does he have use of his arms / hands? Just asking as that would help him do his own reading.
Does he have access to a computer / tablet to read these links? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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(In the presence of TNF-α and IL-6, naïve Th cells differentiate into Th22 cells)
If resistant, may need to add *Fluconazole* which *assists* berberine. (Stop the export pump.)
Why is he not getting IVIG?!
"Although neuroborreliosis may respond to IVIG, it is not known by what mechanism patients respond.
IVIG has an off-label indication for therapy of neuroborreloisis.
In the last published report on this topic, Crisp and Ashby5 proposed that the immune-modulating properties of IVIG
might
ameliorate Lyme disease by any of the following mechanisms: inhibition of cytokines, competition with autoantibodies, inhibition of complement deposition, interference with Fc receptor binding on macrophages or B-cells, or interference with T-cell recognition of antigens."
Neurologists are beginning to examine whether the neuropathies experienced by patients with Lyme disease may benefit from treatment with intravenous immune globulin (IVIg)
which is considered a safe and effective treatment for autoimmune neuropathies.
Mild infusion-related reactions occur often but these can often be controlled by slowing the infusion rate or by symptomatic medications.
Serious adverse effects, although rare, may include
thromboembolic events (esp among patients with pre-existing vascular disease),
renal failure (among patients with renal insufficiency),
anaphylaxis (esp among patients with IgA deficiency),
or septic meningitis (especially among patients with migraine).
Patients with these risk factors should carefully discuss the risks and benefits of IVIg treatment with his/her physician.
At this point, given the lack of systematic or controlled studies, IVIg for Lyme neuropathies is an experimental treatment.
. . . We report the rare association of GBS with severe hypokalemia and hypomagnesemia in a 41-year-old male presenting with acute flaccid quadriparesis . . . .
Introduction:
Hypokalemic paralysis and Guillain–Barré syndrome (GBS) are common differential diagnoses in patients presenting with acute flaccid paralysis.[1]
Urgent recognition of hypokalemia is needed to prevent potentially lethal complications including cardiac arrhythmias and respiratory insufficiency.[2]
Hypokalemia can be caused by acquired or inherited metabolic disorders of muscle ion channels and renal tubules.[2]
Coexistence of hypokalemia, hypomagnesemia, and hypocalciuria occurs in Gitelman syndrome (GS), an inherited renal tubular disorder.[3]
We document the coexistence of GBS with hypokalemia and hypomagnesemia akin to GS. . . .
Case Report and full article through above link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
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Member # 38323
posted
Thanks everyone.
I think the first step is getting them my friend and his family to be open to Lyme and it seems like proper treatment for guillain barre!
Marnie - Do you have medical paper I can send along with that info?
"Does he have use of his arms / hands?"
He texted my husband about the paralysis and IV, so he can use his hands. I left a message to see if he has access to email. Waiting to hear back...
"I pray they will continue the IV for more than 4 days!!!!"
Yes, 4 days is NOT enough.
I need to give information that he and his family can understand. I have no idea how this info is going to land or how to convey it best, but I need to get it to them some way.
I hope I'm taken seriously. I swear, if I can kick this illness I want to get an MD after my name so people will listen to me. So frustrating...
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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posted
- I had wished for some titles with strong connections. Upon scanning the first page, I see no "winner" article upon which to hang my hat. It does not even look to be a true cross search as I can't even find GB in many of these. But I have to stop.
I can't sort through all these but maybe someone else can -- or revise the search in such a way as to ferret out key details.
Guillain Barre, Lyme - 238 abstracts -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
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posted
Texas is a no lyme here state.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Marnie
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posted
Hypokalemia is usually associated with tachycardia (very fast heart rate...120 and higher).
The numerous symptoms of low and high potassium (hypo versus hyper) are very similar which is why blood testing for electrolyte levels are so important.
I would assume the docs ran blood electrolytes testing.
For documentation, just highlight the information, cut (control C)...bring up a blank MS word file and "drop" i.e., paste, (control V as in "victory"...I did it! the information into a MS word file and then
print it out (control P). Know how to do that?
Include the website address and date at the bottom of the information before you print it out...same process.
Keebler
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posted
- Marnie,
Good thought about other infections. I would hope they've considered some of the basics. The ones on that article are not really all that surprising . . . and I'm sure there are many more they overlook.
I was trying to think "what other infection might be likely?" for 2 reasons - maybe it's something else
&/or something else in addition to lyme but that something else which might be treated similarly and then cover all the bases -- and require more than just four days of attention.
Virus treatment, of course, would not cover all the bases.
But that's just where I have to stop. Out of steam and also out of my element.
-- I do strong disagree with Wiki's notion that GB is always autoimmune.
They do note, though, IVIG as one support treatment -- as other replies above mention. And that could be of help if lyme is involved. -
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Marnie
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Edited the above while you were typing.
MS is strongly connected.
EBV or HERV-W (more likely).
In lyme, MS and HIV the KYN (tryptophan metabolism) is skewed the wrong direction. A ratio is off:
kynurenine per tryptophan ratio (kyn/trp).
The "W" in HERV -W stands for tryptophan. It took me a long time to find that.
Autoimmune...some people for whatever reason, can't turn off inflammation.
These pathogens, their proteins, are too much like our OWN!
So even when we destroy those pathogens, if their proteins are then released...
Yum...says other "bugs"...esp. Candida. Bb's PG membrane protein -> glycerol availability...transferrin -> iron availability...
Perfect for candida.
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Kudzuslipper
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Frankly, I think the best read to open up someone's mind up about the possibility of Lyme, is Cure Unknown... remind your friend that even though Pamela Weintraub lived this nightmare, but that by profession she is a very respected medical journalist.
and it reads like a medical mystery. If I can find them I will come back with some shorter articles I found for a colleague who also wouldn't consider the possibility.
you're a good friend judie.
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Keebler
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- It's just much trickier when someone's health (an perhaps very life or mobility) is on the line in the hospital with urgent needs. There is no time to read books then. -
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Judie
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I'm working on composing an email to him (he has access and one of those larger phones so he can read/watch video). I'm trying to figure out the right language. Any suggestions?
"you're a good friend judie."
Thanks for the compliment. I needed to hear that. I've felt like crap lately.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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- If a video, can he use a headset so that the sound does not go out to others?
The sad part of this is that he may not understand why we may tell him certain cautions are needed in how this is presented to doctors and not to "advertise" or banter about even the term "lyme"
I wish I had the ability to help. I hope someone from the closest lyme support group might be able to help in some way. -
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Judie
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"If a video, can he use a headset so that the sound does not go out to others?"
Actually, I'm thinking of waiting until he's out of the hospital to send him stuff.
Someone made a good point that probably the first thing he's going to do is ask the doctors around him about what I sent.
Another issue is his wife just had a baby (less than a year old).
His only quiet time to read through the stuff might be in the hospital.
Any thoughts?
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Judie
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posted
Thanks. I found the mepron link actually helpful to me. I'm going to be starting that one soon and didn't know about the depression part.
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Marnie
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Viruses are much faster than bacteria in doing harm.
How fast did this paralysis happen?
Please refrain from jumping to the conclusion that EVERTHING is the result of Bb.
It is NOT!!!
MANY viruses are MUCH WORSE.
Take Ebola for example.
Which is WHY
"triage"
is in effect.
The TIME, the MONEY, the ATTENTION (all are limited resources) has to be on the pathogens that cause human death
rapidly.
I watched a neighbor go from perfectly healthy to deadly pancreatic cancer ...two weeks following a "flu" virus!
HONEST.
How is this possible?
She likely had an underlying genetic problem...
which involves this gene (a protein):
Kras.
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Judie
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"Please refrain from jumping to the conclusion that EVERTHING is the result of Bb."
He's on IV antibiotics and he's getting better. It's definitely bacterial and he's exposed to ticks all the time.
I'm trying to get him to get a second opinion before they pump him with immunosuppressants.
I did not say he definitely had Lyme, but he needs to get checked out by a better doctor, not ones who say, "Gee, you don't have Lyme, but lets try IV for in case you do have an infection."
Presto, he's improving in a day. What does that tell you???? There might be viruses too.
He's had peripheral neuropathy for a couple months and finally got it checked out when it started progressing to paralysis.
Lyme needs to be ruled in or out by a trained doctor.
A have a friend's sister who was diagnosed with Guillain-Barré and it was Lyme. I just spoke to my doc today and my doc just saw someone who was also originally diagnosed with Guillain-Barré.
Marnie, I know you mean well, but I'm not jumping to wild conclusion. He needs to be checked by a decent doctor.
I don't know what made you think that I'm convinced it's Lyme. I don't understand the tone of the last post.
Judie
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posted
I just got an update. They now have him on IVIG and a cocktail of other things.
He still can't walk and is going to be doing in-patient physical therapy in about a week. He's having severe muscle weakness (gosh, that sounds familiar, I've been stuck in bed with that one).
He has a walker, but can't go far and must.
I'm still working on the email. It sounds like he's going to be in the hospital a lot.
I saw him last Saturday and he was able to walk, but was very weak. The numbness has been going on awhile. Lots of trouble standing (along with me so we were both sitting a lot). This is before he got admitted to the hospital.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
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- Thanks for the update, Judy. I recall some tryouts with a walker. I could not use it at all, due to lack of coordination and muscle control.
I actually wound up downtown, on a busy street corner once, on the ground, all wrapped up in it, if you can picture that. Was not funny then but it perplexed me that anyone could use such a thing if they couldn't walk in the first place.
You still need all the neuro & balance skills to maneuver such a contraption. But my body never did figure out which way was up in those days. Had to ditch that walker.
Several canes also got just tossed into the street, right onto cars at the slightest beep to startle me. That did not go well. But glad that's in the past.
I did not have GB (or whatever it causing it) or paralysis so I can only image that trying to maneuver a walker is going to be a task rather ridiculous& frustrating for him. I don't think they are good for everyone.
I hope he can get some massage and body work, too. -
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