Topic: patient had stroke, blind, CAN'T SPEAK, hitting head on floor...help please!
bettyg
Unregistered
posted
Gang, yesterday, a 67 yr. old woman called for 1 hr. about her 46 yr. old son born handicapped.
She had him at home until age 20 when he was placed in a home for those like him.
He's had a stroke since, BLINDNESS came rapidly for him, he can NOT talk nor show any expressions or in his eyes except to HIS MOM. Lately, when he wakes up, he is banging his head on the floor until they make him stop.
She said he had a TICK ATTACHED to him back when he was growing up and didn't discover it until bath time. He had a fever going home.
She's getting him today to stay overnight for his regular drs. appt. tomorrow.
I suggested the western blots be done on him & offered to print off Igenex' form & blood details. She's to stop any time to pick this up.
She'll ask this dr. to do the paperwork of requesting this WB testing.
I then told her about herx side effects, and that really bothered me since Mike can NOT say verbally or in expressions of where his PAIN IS LOCATED.
To the professional RNs, those with years of lyme experience, if Mike is positive for lyme disease, how should he be treated remembering IOWA DOES NOT HAVE ONE LYME LITERATE MD IN STATE!
Your thoughts & suggestions please. Bettyg
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Oh betty this is a tradgic, and I am very sorry for the mom and the son.
Good question regaurding Iowa's lack of LLMD.
Does the mom know about lyme disease. It would take alot of beleif on her part to get the ball rolling.
Printing out Dr. B's recomendation would be an excellent start.
Maybe also to find some good articles on chronic lyme and neurological manifestations.
Hoping some smarter people will come along with better ideas.
Can you fax the copy of ingenex to a LLMD in an adjacent state?
If the igengex is positive? The problem with a local duck seeing a CDC neg. (Specially with chronics having a harder time making the Worthless CDC standards) he may not get the right treatment.
Can He be moved with special medical supervision? Like to an adjacent state for an appointment with a LLMD?
take care and will keep them both in my prayers
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Betty, You could call Igenex and ask them to send a test kit for tests #188 and 189, Western Blots IgG and IgM, to her address. (Alternatively, to your address.) This would provide a screening test for Lyme.
That way she will have the packing material and the FedEx envelope needed for shipping, in addition to the forms and the proper test tube.
This makes it so much easier.
So, if he's banging his head on the floor, and cannot say where the pain is, have his doctors prescribed any pain medication for him?
I assume that he probably has a heck of a headache.
At least, he could be given extra strength tylenol on a regular basis, which might "take the edge off" his pain.
As I am not a physician, just a retired nurse, I cannot make any formal diagnosis or recommendations. Also, since I don't know what other medications he is taking, a prescription for pain meds should come from his doctor.
But...this is a crime to let someone remain in pain like this.
I wonder how his nutritional intake is, and whether supplements like fish oil and magnesium glycinate might help reduce his pain.
There is a poster on LymeNet whose young adult son is autistic, and cannot speak. She might be able to advise.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BettyG..
So sorry to hear about all this.
Logistically I can not come up with solutions to having no LLMD.. however.. may I suggest?
If testing.. do the Babesia tests too.
When I am in my "brain squuezing crushing my head" mode... it feels like if I banged my head on something hard it would somehow relieve the pressure. I am often tempted.
This makes me think back to when I worked in a facility for emotionally disturbed, battered, and abused children.. and we had several young ones we had to periodicly put helmets on due to them banging their heads on the floors or walls.
They were unable to speak to tell me what was wrong.. and they were kept drugged continuously so they never functioned well.. and no one knew what made them behave that way.
I was contacted privately to see if I could help here...My son is 21 and autistic and is somewhat verbal but cannot communicate the very essence of the pain...which is significant from his behaviors....First she should have him tested with Igenex...then of course find a LLMD...
The best thing I can say for head pain and has helped us to a certain extent is Alka Seltza Gold...It really does usually work. but I have to give it as the episode is coming on..If I dont then it does not work..There are meds like topamax for migraines but I have not found this to help my son....It sounds very much like what my son is experiencing...and I believe the head pain is more severe than we can even imagine.
Prior to starting lyme treatment, my son was screaming with headpain and extremely aggressive due to this....when we started doxy the headaches went away....but we are still experiencing the aggression with every lyme treatment we have tried.
We have him on a number of supplements...but I do believe every person is different and reacts differently....This is what we have found so far..
Cannot tolerate Vit C in any way shape or form....causes severe bladder problems...
Vitamin B-6 causes anxiety and irritablity
GABA-which is supposed to be very calming-caused my son to tongue thrust and panic because he was not able to stop this..
Can Tolerate:
Magnesium Citrate-for constipation...works like a charm....cleans him right out with no loose stools..
Vit D which he is deficient in
Vit A as beta carotene which he is deficient in
Taurine low in...jury still out on how he handles this..
Authia Cream which has the B1 in it (i believe) and jury still out on that too...
Zinc-which is supposed to help with aggression and he is low ...
Questran to help eliminate toxins...helped quite a bit in the frequency of aggressive episodes...
Now he also cannot tolerate Calcium....believe it or not he gets aggressive every time I give it...
So far my son's lyme treatment is not going well...the positives have been
1...Not sleeping all the time. 2...able to tolerate going out in the sun light 3...bowels are regular for the first time in his life...even prior to mag supplementation 4...Facial tic goes away while on abx and comes back off abx....this started just prior to lyme treatment alto he had this going on when he was very young and it went away...
I wish there was more positives but there just arent...
His herxing is getting to go in longer cycles but the episodes are much more severe than they were..
Negatives: OCD which he had mildly prior to lyme treatment is exasberated and we cannot get it under control AT ALL...definetely corrulated with lyme treatment..
AGGRESSION-much more severe as we have continued with treatment alto the episodes are longer apart..
I dont know if I have helped or hurt here....I do know that he has an appt tomorrow with his LLMD and we are seriously considering discontinuing treatment as after one year he has gotten much worse...
Now keep in mind that we just came off a really horrendous week...Fathers day....total meltdown...worse ever...took both of us to control him and we werent doing a very good job of it at that.....he has now started to try a bite us...and this was totally out of his control...
This past Sunday after a trial of Actos we had the same senario only it was at three different times during the day and each one got worse...and he did end up biting me...so with all this in mind we dont know if we are causing more harm than good with him....
I do know he is far more autistic now than he was a year ago....
I am writing all of this only because I have gotten so much help and encouragement from here..I do not mean to discourage anyone...but I am beginning to think that there is something else that the doctors are not realizing going on with a subset of people (with or without extenuating circumstances)that are not getting any relief from the treatments...
I have read several articles that seems like they were written about my son but the treatments are just not working here..... Eileen
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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Seems like others have already given you some good advice. Just wanted to say thanks for your efforts in trying to help this person.
Eileen,
Just wondering if you have tried any treatment for Babesia or Bartonella -- it is possible that one of those coinfections is a worse problem than Lyme and might need to be addressed first.
Also, might try contacting Columbia -- just noticed that they are doing a study on autistic kids with Lyme (age 2 -17). They might have some ideas for you or be willing to evaluate your son.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
THANK YOU ALL! I knew you all would come thru with some wonderful advise for me to give this Mother. She must have had problems with him today, as she didn't stop to get the lyme brochures & IGENEX printed form/blood sample instructions.
Tomorrow morning when I get up, I'll print off this additional info her to take to her MD who will see his son tomorrow late am.
Eileen, thank you for your personal experience with so many of same symptoms. I sincerely wish they can help your son. I agree; sounds like he needs a good rest from lyme treatment.
It's stories like yours Eileen & others on here tha make me thankful for LLMDS like Dr. Jones for kids; good LLMDs for us adults, a good highways to get us to all these OUT OF STATE LLMDS for treatment.
Early 1900s, we all would have been stuck where we are; no knowledgeabl MDs; horse & buggy; no phones or electricity! ME, WTHOUT LYMENT; please do not ever take that away from me! Thanks agan everyone for your expertise.
Tincup, no wonder you have so much "patience" with folks based on your past work expertise!
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bettyg
Unregistered
posted
up for 2-6 am crowd's input... I'll print this off later in morning after I sleep for the Mom who'll pick up IGENEX form, lyme info from me before her 1115 AM appt. Wed., 6-28. Thank you all for contributing.
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sorry to hear about this story, it does sound like they are on the right track.
ebrischoux,
have you tried testing him for heavy metals? i have heard alot of autisic children are high in mercury. it causes alot of brain issuses.
also I'm not sure of this one "Alka Seltza Gold" contains it, but most Alka Seltza tablets have aspartame in them. I threw out all of mine when i read the ingrediants. aspartame is known to cause neurological problems.
Posts: 10 | From East Coast | Registered: Jun 2006
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bettyg
Unregistered
posted
fyi, the info was still out in my newspaper box for the Mom this morning.
I printed off your excellent suggestions, advise, & comments to let her know I had some more info for her to take to MD with her today.
Her car is down for repairs, and still wasn't done. So she had to cancel son's md appt.
Her phone was busy right before me so I tried again.
THERE ARE MIRACLES! A lady from her church who she is power of attorney on, called and informed her she was GIVING her a brand new car. The car dealer owner would over to pick her up and take her to nearby town for her selection! She was just so happy to have dependable transportation.
Then I told her why I was calling about the 9 pages of printed info from YOU ALL. She thought this info was as good as the CAR she was just given. A DOUBLE WHAMMY OF GOOD INFO in the last 20 minutes! Yes, there is a God!
Thanks everyone for your responses here for her.
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posted
with doxycycline, a pulse of the temples is a visual tip off of increased intracranial pressure due to the doxy. i sensed this kind of pressure my in my temples, and it occurred more or less simultaneously with my herx.
Posts: 2708 | Registered: Feb 2005
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posted
the pulsing temples of the head is due to the doxycycline alone, not the herx, even though both maybe occurring simultaneously.
with the increased blood pressure in teh head caused by doxy, and given the stroke, its very unlikely that doxycycline would be would be given any way.
in additon to medical advice, its best to have on hand, copies of drug descriptions from the pdr, and nursing drug books that will give many clues to look for.
Posts: 2708 | Registered: Feb 2005
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bettyg
Unregistered
posted
pq, thanks for your advise too! Bettyg I'll include it in what's in my mailbox.
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posted
Well you have all made my day...I recd many PM's and it was so very nice to hear from all of you with your concerns and helpful suggestions..
Negative on co-infections...I know that doesnt mean a thing....did a 2 cycle course of Mep/Zith and by 5 weeks his aggression was the worst we had seen prior to last week...His LLMD uses Mepron for lyme too...he had gotten aggressive in the car and I had to stop the car three times...it was both frightening and dangerous...so we had to stop this treatment...as the behavior continued after three week mark...
Here is what gets me....you know he herxes in aggression and badly....isnt there anything to give him to get over this hurdle....
We have also been avoiding tinnidazole as his LLMD said he would get headaches....well if they were just bad headaches, like I get..ok...but they are massive..they have to be by the way he reacts..
What I need is something for inflammation...that will give an immediate relief to him...at 210lbs and all that adrenaline or whatever the heck it is built up flowing it is difficult to handle....then you have my husband's added worry of when he is not home and this happens when I am alone...
So you can see how depressing this pictures looks...
I checked the AS Gold and there is NO ASPARTAME...a big no no...
Yes his holistic doctor will be doing metal testing altho I have two hair tests done on my own awhile back and it didnt show metal toxicity but did show skewed results...and there is a term that I just cant remember right now..
His llmd visit went ok....his doc does not want to give up on him...so we are taking a break and in the meantime mulling over suggestions of pulsing mino or penicillan shots....
Thanks again....Eileen
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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