Hi all. I've read many posts before when I've had a question or two, although I've never posted until now.
I have a general question.
Basically the situation is that my cousin's 7 year old has been in the ICU for three weeks now; he's suffering encephalomyelitis (dr.s think viral). He started out one day with respiratory problems and then the next day couldn't move is right arm, and it all quickly deteriorated after that. Within two days he was intubated, couldn't breath on his own (b/c of partial paralysis of a lung) couldn't swallow, and couldn't move three of his limbs. The dr.s have done all kinds of tests to figure it out, but as of Thursday they were still "confused" and stumped. They had given my cousin hope that he would recover fully although it would take much time. After his third MRI (and I don't know what it showed exactly) on Friday, now the dr.s have said, they don't think he will get better, recover his movement (even lungs). they tested for lyme, but of course with ELISA and no surprise it was negative. I know not everything is lyme. I know it very likely could be viral, but personally I think it could be bacterial too (borrelia). Am I right to be suspicious of that? I feel desperate to try to offer any help to my cousin; not that I'm some expert, far from it. But I was just wondering if anyone had any ideas, insights, stories that seem similar, suggestions. anything. It's so incredibly sad and hard to accept that this might he might not recover. I think every stone should be turned over. Thank you so much for any thoughts.
Posted by Judie (Member # 38323) on :
Yes, you are right to be suspicious. You might want to hand the doc medical papers. It seems like they only take other doctor's opinions seriously sometimes.
Here's some information on paralysis, Lyme, etc...
My friend is in the hospital with Guillain Barre and the doctors said it can't be Lyme, but they put on IV antibiotics to take care of IF there was an infection and he started to improve.
Can you get them to do a Western Blot thru Igenex Lab?
Posted by staceystar (Member # 43880) on :
thank you Judie for these links! I'm going to read through them and send them along to my cousin.
I've told my cousin about Igenex. I know of Igenex b/c my son had lyme; last fall-spring. He's four and he's basically symptom free now after months and months of treatment, although we're using Beyond Balance herbals now to deal with any minor, occasional symptom. We had my son tested through Igenex last December.
So, when this all started happening a few weeks ago, since I've read lots on lyme, etc., I mentioned lyme and told her that even the College of American Pathologists does not consider the test they gave him (ELISA) sensitive enough to be part of the diagnostic process.
My cousin did say she would consider the Igenex lab. She seemed open to it. I fear that the dr.s may have poo-pooed it (I told her they just may) and said it wan't necessary. Anyway, I will tell her again that that would be a good idea. B/c really, with ELISA, lyme hasn't been ruled out, although it came back negative.
One good thing about the dr. saying what they think, is that I get the impression that they are close to releasing him from the hospital (could be wrong, but that's what it seemed like was happening). It's completely sad to have him go on from there with paralysis and with breathing tubes, but, it would mean that it would be soooo much easier for my cousin to find another opinion and have him tested with Igenex and be with a lyme literate dr. hopefully. Even if they aren't with just an llmd, to at least have one on the case would be important I think.
Thank you, thank you for the replies both of you guys, and for the links!
thanks in advance for other thoughts too!
Posted by Phoiph (Member # 41238) on :
staceystar...
Please consider having the 7 year old evaluated as soon as possible for this condition by a specialist in Hyperbaric Medicine...the sooner the better.
I know of 2 in the country I would recommend, one of which is also a neurologist. They may be able to recommend someone closer to you.
You can PM me for their contact information...
Posted by Notti (Member # 43843) on :
Perhaps this article is helpful:
Neuroborreliosis presenting as acute disseminated encephalomyelitis.
I truly hope your cousin will regain his health. Wishing you strength.
Notti
Posted by staceystar (Member # 43880) on :
thank you Phoiph and Notti and again everyone,
all of the links and comments are just what I was looking for, a sort of encouragement to mention the Igenx again to my cousin, and mention the possibility of these things that I think the neurologist is not considering.
I don't think she's considering them, b/c she has said, after three weeks, that she (they) still don't know what is causing this all in him, but they she does think he won't recover use of his limbs.
One thing I was mistaken about is that they do think he may be able to breathe on his own! That would be an incredible start! They are removing the tube this week to test it.
Now, I know there is a chance he may not recover use of his limbs, but like these links, and ideas state, I think they need to look into things that were ruled out too soon. thank you all!
Phoiph, I'll pm you here in a minute or two. I haven't heard of hyperbaric medicine and am interested in learning more. thanks!
[ 09-15-2014, 06:55 PM: Message edited by: Lymetoo ]
Posted by GretaM (Member # 40917) on :
Have they given him any antibiotics via IV?
Now would be the time to ask...
If he is as bad as the docs say...what is there to lose?
Sorry he is suffering so.
Hope he recovers soon.
Posted by staceystar (Member # 43880) on :
hi Greta,
not sure if they are giving IV antibiotics. My sister, a nurse, was assuming that they probably did, if not just even at first (3 weeks on hospital so far), but my cousin and I have only messaged back and forth a few times, and I didn't ask about that.
I'm in contact with her sisters too, my other cousins, and I've never heard them mention antibiotics, but don't know if maybe they did/do and just I haven't heard.
They (cousin and family) seem to mention most other treatments he's done, i.e. plasmapheresis, IVIG, transfusion at one point, and steroids. yep, steroids early on, but after two days (out of five that they were planning) the dr.s stopped the steroid treatment b/c he was…you guessed it, getting worse.
(which I've read steroids are bad for lyme and some other infections, like probably you guys, who know more than me know anyway.) Thanks for the well-wishes and thoughts. I think I'll send her another message tonight and her mention Igenex again and antibiotics, etc.
**edited for easier reading .. please give space between every few sentences**
[ 09-15-2014, 06:54 PM: Message edited by: Lymetoo ]
Posted by Brussels (Member # 13480) on :
Look into TBE, tick born encephalitis.
If it is TBE, or if you suspect it, the boy needs URGENT treatment. TBE is nothing like lyme. It acts fast, it takes 2 to 3 weeks to make havoc in a body, and unfortunately, the damage can be permanent.
Forget about lyme treatment, and just concentrate on TBE treatment. Unfortunately, if lyme is still unknown by the mainstream medicine, TBE is practically unknown.
Dr. K. had a protocol for that. LOAD the boy with Vit A, in HUGE amounts. I would also add loads of Vit C.
My daughter got this, so far the WORST infection of all, in its acute phase. After 3 weeks, things get better, but it may be too late to fix the problems... here in Switzerland many people get permanent problems, that are not small.
I won't write more, not to scare you too much.
Inform yourself and tell the parents. Treat on your own, as you'll probably find no fast help.
I did that to my daughter, as I had no choice. Dr. K. helped me, as someone from lymenet contacted him. Make a search here, I think I posted exactly what I did.
I was either Brussels or hardynaka (old screenname), and I think it was in 2007 or 2008.
Posted by LymeCFIDSMCS (Member # 13573) on :
Honestly, I'd wonder about the enterovirus going around if it started with respiratory symptoms, which they don't seem to know much about -- in Europe, enteroviruses have long been thought to cause or be a cofactor in myalgic encephalomyelitis (renamed chronic fatigue syndrome in the US). Enteroviruses in general can cause paralysis (i.e. polio is one, but people with ME/CFS can have temporary or permanent paralysis too).
But also, since I have both ME/CFS and Lyme (which I personally believe are different but can overlap and people are often misdiagnosed one way or the other), I remember when I first got Lyme on top of ME/CFS reading that the pattern of bands I had on the W. blot more closely linked those found in European borrelia patients. Then I looked up borrelia in Europe (I think it was b. garinii) and it seemed more likely to cause "encephalomyelitis" which definitely made me wonder about that, and it's connection to ME in Europe as well.
So I wondered (for myself) if maybe I'd simply been infected with different strains of borrelia at different times, among other things, since I did travel to Europe before getting sick. If he has ever been to Europe I'd make sure he's properly evaluated for all strains of borrelia, including those less common in the US.
Posted by LymeCFIDSMCS (Member # 13573) on :
Also, keep in mind (obviously people on this forum can testify to this) that people can have multiple infections -- including bacterial plus viral infections, it does not have to be either/or.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LymeCFIDSMCS
Honestly, I'd wonder about the enterovirus going around if it started with respiratory symptoms, which they don't seem to know much about -- in Europe, enteroviruses have long been thought to cause or be a cofactor in myalgic encephalomyelitis (renamed chronic fatigue syndrome in the US). Enteroviruses in general can cause paralysis (i.e. polio is one, but people with ME/CFS can have temporary or permanent paralysis too).
- That was my first thought.
Posted by staceystar (Member # 43880) on :
yeah, I thought about the enterovirus also, since we're here in the midwest where it is right now.
I could ask my cousin for sure, but I think they tested for the enterovirus 68 that is going around and that it was negative. I suppose it could be a different enter virus that acted similiar though. They tested for West Nile and it was negative. My cousin said they told her it was not a "polio-type" (or family, or something like that) virus, yet still a virus they think.
What's confusing a bit, is how stumped the dr.s are. They, even as of last weekend when they said they don't think he'll recover limb use, said they "don't know what's causing this", but the "think" it's viral. It could be I'm sure, or like LymeCFIDSMCS said perhaps both bacterial and viral. What's frustrating is that for two and a half weeks they told my cousin and her husband that they did think he would fully recover, it would just take time, lots of time, like months-many. Then on Sat. morning…no, not going to recover use of limbs.
Since, I'm not privy to all the conversation and information I don't know if they saw something on his MRI he had Friday, or they just changed their minds. My cousin simply said they told her they don't know exactly what it is, but it looks like he won't recover.
I think, as a last ditch effort, realizing it may not be lyme, but realizing it's not so far fetched to say perhaps it is, that they should do the Igenex test.
But what a reaction, to whatever it is. It seems to me there must be a few things going on with him for such an extreme reaction. B/c if it were an enter virus (68 or otherwise) why aren't all the other children experiencing this? (thank God they aren't, but I wish to God he wasn't either.) it's so sad, and so confusing.
and Brussels, I'll look into the Tick Born Encephalitis.
Posted by Lymetoo (Member # 743) on :
I would think that like any and all testing, it won't always show up .. no test is 100% accurate.
Tell them to NOT give up hope! Posted by staceystar (Member # 43880) on :
thanks lymetoo! absolutely right, not to give up! not ever, but especially not now, when it's still early on and not all options have been exhausted!
thank you for the encouragement!
Posted by Carol in PA (Member # 5338) on :
Staceystar, if your cousin is serious about getting her son tested by Igenex, she needs to have the testing kit in hand.
This is why. When doctors order a blood test, the lab draws the blood and tests it, or sends it to another lab to be tested. If the doc is not familiar with Igenex, he won't know where it's to be sent, or that the blood should be spun down and the serum drawn off first, and that payment must be sent with it.
Also, the blood must be drawn on a Monday, Tuesday, or Wednesday, and overnighted the same day. This way Igenex gets it before the weekend, and it won't sit around for a couple days before testing.
In my case, I copied off the Igenex page that showed the list of tests and test numbers. I wanted tests number 188 and 189, which are Lyme Western Blot IgM and IgG. I used a yellow highlighter on those and showed the page to my doc. He had put me off for nine months, but as soon as he saw the page of info, he agreed to write the order for me.
I called Igenex lab and requested that they send a testing kit to my doc's office. Well, THAT was a mistake, I should have had it sent to my own address and then brought it in with me.
The nurses didn't understand that the extra stuff in the kit was packaging materials in order to FedEx the serum back to Igenex. They thought it was very odd, saying "We've never done this before."
The lab tech at the office drew my blood, but wasn't going to spin it down until I insisted. I had read the instructions!
The nurses at the office acted like they didn't know how to call FedEx for a pickup. "We've never done this before."
I assured them that I would pack up the tube of serum and use the enclosed mailing envelope to overnight it to Igenex via FedEx. The instructions explain how to wrap the tube, put it in the cardboard container, put it in the zip lock plastic bag, and where to put the address stickers on the prepaid FedEx Envelope.
"Why don't you have this done at the local lab? We've never done this before."
I took it home, reread the instructions and made sure the form was filled out, wrote a check, and looked up the FedEx number in the phone book.
Two hours later, the doorbell rang, FedEx took the envelope, and that was it. I had never done it before either.
Igenex offers testing for a number of tick borne infections, but I just wanted a simple screening for Lyme antibodies. Since your cousin's child is so ill, a knowledgeable doc would likely want to order a bunch of tests.
This will be a problem, as the child doesn't have a knowledgeable doctor. In my case, my family doc looked at my test results and didn't know what to do with them. I had already assured him that I didn't expect him to treat me for Lyme.
Your cousin should phone Igenex and request a testing kit be mailed to her. If she's too frazzled, YOU could phone Igenex and make the request. I did this for a friend once, the receptionist was very nice about it. She can tell you how much the tests cost now, and that will be on the forms also.
Truthfully, I don't think the Igenex testing is going to happen for your cousin's son, as a physician must write an order for the test, which must be enclosed with the serum.
Your cousin must be knowledgable enough about the whole thing to be able to explain what she wants from the doc and why.
The docs aren't too keen on friends and relatives of the patient telling them what to do.
http://www.igenex.com/Website/# Click on "forms and sample requirements" and then on "CPT codes" to see the complete list of tests available. This is the page I showed to my doc when requesting the Western Blot tests.
Igenex phone: 800.832.3200
Posted by LymeCFIDSMCS (Member # 13573) on :
It's my understanding that *in general* enterovirus testing -- like Lyme testing -- isn't that great. You might want to check out the Enterovirus Foundation: http://www.enterovirusfoundation.org/directors.shtml
I think they typically recommend testing via a stomach biopsy or other unusual methods.
Would a medically-induced coma or sedation be indicated in this case, w/ intensive antivirals and antibiotics? It sounds serious and disturbing, but also worrisome the doctors can't figure it out.
Since you're in the Midwest, what about agricultural exposures (i.e. something like brucella, Q Fever) -- or histoplasmosis or another soil-borne organism?
Posted by staceystar (Member # 43880) on :
thanks Carol in PA for all the Igenex info. Yes, I agree that unless he gets to a lyme literate dr. to order the test that it won't be done. Even when I told her about Igenex a couple of weeks ago, I pretty much knew it would be quite a hurdle to do it without a llmd. and in fact, even if it were done by a non-llmd, I think they possibly wouldn't interpret it correctly, unless it came back positive, (not considering IND bands perhaps) and even at that, if it came back positive, would it be treated correctly by a non-llmd.
I don't know how much longer he will be in that hospital, but from what my cousin said it kind of sounds like the dr. was saying, "this is his life now, and we're preparing you to get him ready to go home with you."
how long that will take; I don't know.
But, honestly, I think it's a chance for them to take him to a different dr.
even if she's not thinking of lyme, if I were my cousin, I would for SURE, get a second opinion. My hope (prayer) is to get her the name of a couple of good llmd options in IL. I've been asking about lyme literate neurologist in Chicago, or at least lyme "aware' who would be open to testing with Igenex.
My son's llmd is in Peoria, and she's a good option, and my cousin might listen to that, but with all that's going on with him, I can understand her wanting a neurologist to see him. I had someone give me the name of a neurologist in Chicago who dx her with lyme. I'm going to look into that dr. or maybe they could see a neurologist and a llmd. there are options. I still feel there is hope.
LymeCFIDSMCS, I was wondering about that , about if enter virus testing was also not so reliable. will look up the brucella and Q fever, and other.
so many things it could be.
do these other infections cause neuropathic pain too? one thing my cousin has mentioned is that he has much neuropathic pain and some itching. his paralysis is acute flaccid i think it's called, but not sensory. anyway, just wondering about that.
thanks again. the more I read, the more I can learn.
Posted by staceystar (Member # 43880) on :
thanks Carol in PA for all the Igenex info. Yes, I agree that unless he gets to a lyme literate dr. to order the test that it won't be done. Even when I told her about Igenex a couple of weeks ago, I pretty much knew it would be quite a hurdle to do it without a llmd. and in fact, even if it were done by a non-llmd, I think they possibly wouldn't interpret it correctly, unless it came back positive, (not considering IND bands perhaps) and even at that, if it came back positive, would it be treated correctly by a non-llmd.
I don't know how much longer he will be in that hospital, but from what my cousin said it kind of sounds like the dr. was saying, "this is his life now, and we're preparing you to get him ready to go home with you."
how long that will take; I don't know.
But, honestly, I think it's a chance for them to take him to a different dr.
even if she's not thinking of lyme, if I were my cousin, I would for SURE, get a second opinion. My hope (prayer) is to get her the name of a couple of good llmd options in IL. I've been asking about lyme literate neurologist in Chicago, or at least lyme "aware' who would be open to testing with Igenex.
My son's llmd is in Peoria, and she's a good option, and my cousin might listen to that, but with all that's going on with him, I can understand her wanting a neurologist to see him. I had someone give me the name of a neurologist in Chicago who dx her with lyme. I'm going to look into that dr. or maybe they could see a neurologist and a llmd. there are options. I still feel there is hope.
LymeCFIDSMCS, I was wondering about that , about if enter virus testing was also not so reliable. will look up the brucella and Q fever, and other.
so many things it could be.
do these other infections cause neuropathic pain too? one thing my cousin has mentioned is that he has much neuropathic pain and some itching. his paralysis is acute flaccid i think it's called, but not sensory. anyway, just wondering about that.
thanks again. the more I read, the more I can learn.
Posted by Brussels (Member # 13480) on :
The TBE virus (TBEV), like the causative agents of yellow fever, Japanese encephalitis, and den- gue fever, is a member of the flavivirus genus belonging to the flaviviridae family. 4)
Most flavi-viruses are what are called arthropod-borne viruses, or arboviruses, because of their specific
route of transmission by infected ticks (e.g., TBE virus, Louping ill virus) or mosquitoes (e.g., yellow fever virus, dengue viruses, West Nile virus,
If they are so common in Europe, I wonder if infected people didn't travel to the US and transmitted this infection to the American ticks.
If you think that Borrelia burgdorferi very probably started here in the Black Forest, just make your guess.
TBE is called FSME, by it's German name (Fruhsommer meningo encephalitis), and virtually every one here vaccinates children against it, so common it became.
I wouldn't recommend vaccinations, I'm just writing to show how common it is in central Europe, Austria, Germany, Switzerland... Just see the list, it's big, and getting bigger and bigger.
I live in endemic area for FSME. You can watch documentaries on local TV about it. People do get the same symptoms as the poor boy. They usually do not get better after, but some have mild improvements.
It takes 3 weeks for the infection, in its acute phase, to develop and wreck havoc. That is why I suggested self treatment with certain supplements recommended by dr. K.
I lived through the FSME hell. My daughter got it. I'm so glad I treated her myself, when all doctors around said she needed to be hospitalized. How can I trust the medical system, that refused lyme treatment to me and offered only a 3 week abx treatment for her, followed by CORTISONE injections?
I don't trust them, unfortunately. Fortunately, my daughter got better with massive home treatment, microcurrent, loads of Vit A and C, if my memory is good. Waiting would be catastrophic.
Just try to get a test for this flavivirus). At least, parents will know the cause.
I'm so sorry to hear about the boy. I've been in the skin of his parents, and I can tell you, it's the worst feeling a parent can have, to see a child falling so sick so fast, and getting full blown damage. thanks to lymenet, a lymenet member and dr. K (and some other help it's hard to explain here), my daughter went through it fine, despite her active lyme disease.
Posted by staceystar (Member # 43880) on :
thank you Brussels, I will pass along the flavivirus info.
What I'm going to do, is call her sister, and mention these ideas I've been gathering to her. I think my cousin, the mom, is actually overwhelmed and not her nature to be the one to research on her own. I can understand that she is obviously feeling the weight of the world on her right now.
Thank you though, and I will definitely look into that and pass that along! and, I'm so glad that your daughter got over that!
oh, and you mention Dr. K. You may have mentioned in your earlier post that you saw him? I'm sorry, I can't remember. I think you probably the Dr. K, with the Kl…Academy, on the west coast? Funny you mention him, b/c I've been thinking of telling my cousin to try contacting him. I'm sure there's a lengthy wait though, and it's so far from us, and as of now, he's not even stabilized breathing on his own to leave the hospital, but oh how I wish he could see Dr. K!
Posted by Brussels (Member # 13480) on :
You're welcome Stacey.
It's Dr K from Seattle. He was sick with lyme himself long ago, caught it from the Black forest here. Then moved to the US.
But he comes back very often here to Europe to teach about lyme treatment and brain disorders. So he is THE guy that knows what is going on in the lyme disease field in between these 2 continents.
There is no one that is so knowledgeable on lyme and coinfections from both continents.
If I didn't know the people trained with him, I would have just send my daughter to a hospital here.
You can bet she would have been permanently damaged from FSME (as she got chronic lyme on top). There's nothing they can do except wait and see, pain killers, and giving fluids.
Our medical system, all over the world, is catastrophic. See now for the Ebola virus. They talk about new drugs, new vaccines, while there are certainly some cheap supplements like magnesium chloride that could already help avoid deaths...
Or even chlorine dioxide, that people do not want to take but that proves efficient for diseases like malaria, even lyme.
If the parents don't want to read about treatments themselves, I understand them. It's not their field, they pay to get good treatments etc.
Unfortunately, the professionals we are supposed to trust, are not always reliable. On the opposite, most are unreliable.
Every single sufferer of lyme disease knows that if you don't get informed, you won't get better. It's such a complex disease even for informed medical doctors with years or decades of experience.
But for FSME, there is no time to get informed. I just read a bit about the development of the disease in its acute form, and knew exactly that I needed urgent help, as I wouldn't have time to do trial and error with my daughter.
I pray the boy has stabilized now and that he can get partly back what he lost.
Suppose it was that FSME flavivirus, and lyme on top, and the boy got permanent damage from that, even though he was in hospital and receiving medical care...
Once you live that as a parent, you become a warrior.
Posted by Carol in PA (Member # 5338) on :
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