posted
Even after 7 1/2 years dealing with these crazy tick-borne illnesses I still can't predict or explain the rollercoaster changing symptoms. Sometimes there just doesn't seem to be any logic or reason for why things happen like they do.
As some of you may have read in a previous post, hubby has been having a really bad flare-up of neuro symptoms for the last 3 weeks. Everything we have tried seems to backfire after an initial positive response.
In desperation we have tried reducing some antibiotics, stopping others, doubling his Lyrica, many supplement and herb changes and most recently adding Cortef (hydrocortisone) for brain inflammation.
His LLMD and herbalist have really been trying, but today I got scared and ended up taking him to the ER. And as has happened in the past, they made a bad situation worse.
Hubby had done so well for the last 8 or 9 months that I had forgotten just how severe and unexplainable all these neuro symptoms can be. When you deal with seizure-like spells multiple times on a daily basis year in and year out you don't exactly get used to it, but you tend to take it in stride after the initial crisis resolves. You know things are not ``normal'', but you just kind of adjust your expectations I guess.
Anyway, the LLMD doubled hubby's Cortef Wednesday night. Thursday it was like someone flipped a switch and turned the lights back on. Hubby got up and got dressed and even though he didn't feel right he could have passed for normal - very few tremors and no myoclonus or seizure-like spells all day. I even let him drive to the postoffice which is a couple of miles from home. He did have one spell at 10:00 p.m. but had a fairly good night otherwise.
Today it was like someone flipped a switch and turned off the lights again. Hubby was going to go have his routine bloodwork done. He took out the trash first and cranked up the car and left it running. By the time he made it back to the bedroom he was shaking uncontrollably and having dry heaves. About all I could get out of him for the next 3 hours was that his head hurt, especially the right temple, and he was dizzy.
Yes, I did remember to turn off the car after about half an hour.
After 3 hours of watching all the crazy shaking and jerking and seeing his head shake from side to side and his face contort and all the grunting and groaning and teeth chattering and tongue wagging (palatal myoclonus) I gave in and took him to the ER. I had given him IV heparin, IV Phenergan and IV fluids but nothing seemed to help. He had already had his morning Cortef, Ativan and Lyrica.
The Bell's Palsy was extremely active with his mouth drooping to the left and hi s right eye closed (he couldn't open it). Normally these type of spells will resolve within 30 minutes or so. Hubby's jaws were clenched too tightly for me to give anything by mouth.
Very little help once the ER determined he was not actually having seizures - he kept jumping every time they turned the lights on in the exam room and every time the beepers went off (he kept having PVC's which we already had checked out by a cardiologist earlier this summer). Hubby finally became aware of where he was and kept saying no no for an hour or so. They gave him IV Ativan and IV Benadryl (he said later that was like coals of fire in his head) to sedate him enough for a head CT which was normal.
I really felt like I needed to make sure he wasn't having a TIA or he didn't have some sort of bloodclot.
And as usual in the ER it took forever - a total of about 5 hours. The part that really upset me was that they didn't give him any fluids and they wouldn't let me give him any of his normal meds. And to top it off they discharged him with a fever - 99.2 I think. But the biggest disappointment was his PCP - he was in the ER seeing other patients when we left, but he had already told them to discharge hubby and of course no one would page his LLMD.
Hubby briefly ``came to'' in the ER at one point and then his broken record recording changed to ``Want to go home''. So that is what we did.
Hubby was shuffling doubled over and I wasn't sure I could get him up the steps to our 2nd floor apartment but somehow managed. At this point he was still incoherent and this was 8 hours after the episode started. He never actually passed out, just seemed out of it and couldn't communicate.
Anyway, all I could think to do was give him more IV fluids. After about half an hour I was able to pry his mouth open to give him a dose of Cortef - I know that is normally given with food, but I had to do something. About 15 minutes later after some extremely violent shaking he suddenly went limp - this is always the scarey part for me. I have to keep checking to make sure he is breathing.
About 15 minutes after that he ``came to'' and was holding his head in pain. He was perfectly lucid. Told me his headache was a 9. I gave him a couple of droppers of white willow bark and made him eat some applesauce and a few gluten free crackers and a banana. Also gave him a butterbur/feverfew capsule which has helped a few times in the past. Within half an hour his headache went away and he was able to eat a little chicken and some green beans and mashed potatoes.
Hubby can remember most of what happened - he was never actually confused this time. He just couldn't communicate.
Neither one of us can explain or understand what went wrong from one day to the next.
For now we have decided to go back to the original dose of Lyrica. And I told him that next time I think I will just let him lie in bed and shake and not try any more IV phenergan since it is just not working to calm the tremors anymore. And we both agreed to avoid the ER.
I just wish we had an option to change PCP's but that is not possible. This is the only one who would accept him as a patient last year after all the hospitalizations and the New York fiasco.
Hubby is in bed and sleeping ok. I woke him at midnight to give him his Ativan and Lyrica. Milder tremors continued until bedtime, but the headache stayed away. His face is back to normal so obviously the brain is less disturbed.
If you read this, can anyone relate and give me any feedback at all.
We are just trying to hang in. Not looking forward to the drive to hubby's LLMD on Tuesday and Wednesday. Thankful for the appointment, but it sure seems like forever until then.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
This is nothing new really -- hubby has had other days somewhat similar to this one and there really weren't any new sysmptoms -- do think that this is probably one of his worst headaches ever though. Normally he tells me a "3" or "4" or just says his brain feels swollen.
Hubby just woke up nauseated so I need to get off the computer. May not be able to check in again for several days -- who knows. I sure don't anymore.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Gosh Bea,
I continue to read your posts with real hope for you two. I have no experience with what you are dealing with, at least not to the degree that Steve is affected.
Just want to say that the two of you are in my thoughts and prayers.
Hang in there, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
It breaks my heart, Bea. He was doing so well.
I'm sure it was a frightening, frustrating visit to the ER.
Thank you for sharing this information. We really care about you two.
God Bless Kelmo
Posts: 2903 | From AZ | Registered: Feb 2006
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Bea, my heart just goes out to you. I speak from experience, when taking care of a loved one (my mom, in my case) that has a chronic, ongoing, unexpected symptoms, type illness.
I spent 22 years of my young adulthood, trying to manage my mom's care. And, I did it long distance. It was not the best scenario, but you know, we do what we can do, as we live through it.
It sounds like you are doing just that---doing what you CAN do, as it happens, as best you can. I have followed your story throughout the time's you have posted, and I usually can think to myself, that man, you have just got to have so much patience and love for your husband to be living this with him!
I have no advice, I am so sorry. This also just backs up my original feeling that, lyme disease is SO SCARY. We are playing around with trying to get treatment (and I say "playing around" because we cannot follow a cut & dried anything when we are going after a treatment here). And, the medical establishment is letting us down.
You have my utmost respect, and I wish I could reach through time and space to give you a warm hug. I'm glad you can come on this message board and find support. Julie
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Bea,
I'm so sorry that either one of you are having to go through all of this. Again, I'm another with no "advice".
I did want to let you know that my thoughts and prayers are with you. This is such a horrid disease and can definitely relate to the "no more ER's"....since I have told my husband the exact same thing.
Try to hang in there and please continue to keep us posted. We really do care.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hang in there.
where were times when i was this ill, although i got out of the really rough spots after about six months.
i am still sick but able to care for myself and work p/t.
you guys are in my prayers. keep keeping on is all i can say. sounds like you know what you need to know.
if you dont, make sure you check everything (metals, adrenals, etc etc) to make sure all the bases are covered.
good luck and hang in ok?
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Bea, I am so sorry you are having such a rough time...especially since your hubby had been doing so well prior to this.
I don't have any advice, but definitely am sending prayers your way.
God Bless you both!!
Posts: 1366 | From Southeast | Registered: Sep 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Bea,
The Bactrim DS can cause Vitamin B deficiency, (I believe it's Folate).
I just posted threads about different vitamin deficiencies. Several of them can cause serious neuro problems.
I also posted a link to a chart listing deficiencies caused by different meds.
This is so upsetting to hear when I thought he was finally making some headway.
My dad had HUGE problems when he tried upping his dose of Lyrica. He also recently had some big problems with a build up of his meds in his system.
He was in A-fib & I'm not sure if that's what was causing it. They put him on Warfarin & it made a tremendous difference for him.
hugs & prayers Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
bea and steve,
sending my thoughts and prayers to you both for your continuous ordeals at ER, etc.
have no experience but taking this up to top for HOPEFULLY folks CAN relate to what you are experiencing! betty
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Hey Bea,
I don't have any advice either, but I want to tell you what a brave and incredible person you are to stick by your husband.
My thoughts and prayers are with you that you'll soon get it all figured out and that this spell won't last long.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Bea, you have more knowledge than alot of doctors that have seen my daughter, so you probably have covered all of the bases that I want to suggest.
That being said, there were a few things that came to mind when I read your post.
The first was vitamin D3. You probably have had his checked, but it sounds like he is too sick to get much sun. Supplementing D3 made a huge improvement in my daughter's progress. She has been treated for lyme,etc for about 7 years also.
She hasn't had as many of the muscle problems as your husband, but she has had an intractable headache the whole time and nausea and she had pseudo seizures for a year or so.
I asked to have her vitamin D levels checked in January and they were so low, I could hardly believe it. We live in a southern state so I thought she would have been all right.
When we first started supplementing, she herxed. I started just giving her D3 two times a week. She started to respond better to the antibiotic--Bicillin injections. My theory is that if D is too low, antibiotic treatment will fail.
My second thought is to try to taper off of the ativan. I of course am no medical professional and speak only from experience. My daughter was on a high dose of xanex and her psychiatrist--who had been the dr who put her on it--decided she needed to be off of all benzos. She did not want to get off of them of course, but managed to follow the dr's treatment plan. It has made a world of difference.
She has not had any pseudo seizures in months now. I don't know if it is from better response to the Bicillin or if she just needed to rid her body of the benzos. I have wondered if there is a link to prophyria--with some lyme patients-- that is induced by all of the meds they take.
The last suggestion is to try the Deseret Biologicals' Bartonella Series Therapy. That has also helped my daughter. In fact we are going to do another round of it. We tried the Borrelia 10M series and she didn't do as well on it, but again it is always a test to see what works for each patient.
I am just starting to learn about homeopathic treatment and I think it holds great promise for lyme, etc patients.
So sorry you have to go through this again. I know from experience that it is not just discouraging, but heart breaking. I so admire your perserverence and pray that God will give your doctors an epiphany on new treatment for your dear husband.
Posts: 177 | From God's Grace | Registered: Apr 2007
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Hubby had a half way decent day yesterday and about the same today. Tremors off and on but nothing severe.
Thanks to AliG for posting all the nutritional info. I revisited hubby's bloodwork and do think there is one item that could be significant. One of hubby's liver enzymes (SGOT) has been running low since 7/3/08 -- value is less than 5 (Range 10 - 42).
My lab manual lists one of the possible causes as Berberi or Thiamin (vitamin B 1 deficiency). Also lists metronidazole (Flagyl) as a cause. Hubby does not take Flagyl but he is on Alinia which LLMD told us at last appointment was a combination of Flagyl and one other chemical.
Hubby is taking 2 B100 capsules daily -- obviously if this is a thiamin deficiency that is not enough. Just went to GNC and got a bottle of B-1 300 mg capsules. Can't hurt to give this a try.
Actually hubby decreased his Ativan from 3.0 mg to 2.5 mg daily within the last month -- don't really think that is impacting things, but who knows.
Hubby is taking 2000 IU of vitamin D daily. His LLMD retested this recently -- still low but had significantly improved.
Pretty sure the increase in Lyrica did cause a negative fallout. Have gone back to original dose of 25 mg 3 times daily.
I know the description of the incident sounds pretty extreme and some might think hubby is overmedicated. But the reality is that this was pretty typical of the incidents that happened frequently during the first 6 months of hubby's illness over 7 years ago when he was on no antibiotics.
He was in many ER's and had many head CT's and MRI's and EEG's in a short period of time back then, but all the neuros kept saying his neurological exams were normal.
The only real changes were the appearance of cold agglutins when he had the first dizzy spell -- most frequent cause is mycoplasma.
Also I started him on Spiro Kete from Kroeger herbs -- primary ingredient is monolaurin or lauricidin from coconut oil.
I think the most likely possibilities are that we have either uncovered an undiagnosed coinfection or the bart/BLO/myocplasma has become drug resistant or there is some virus which is untreated and it has become reactivated.
Obviously the LLMD will need to do some bloodwork. Just hope we can resolve this quickly.
The main new symptoms hubby has been having since the dizzy spell in early October is severe leg muscle weakness and much more active facial twitches and neck stiffness.
Will keep you all updated.
We greatly appreciate all the kind words and prayers.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
You might also add Nature's Way Garlicin or another garlic supplement with high allicin levels. Dr. Zhang uses allicin in his herbal protocol for neuro Lyme (he sells his own garlic supplement).
I think Garlicin has helped me with my neuro symptoms. It's just one more thing to try but it might help. I have jerking seizures as one of my symptoms too. Bicillin has also helped with those.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Bea, just wanted to let you know i've been going through the same things only not to the point of the ER..and my hubby's name is Steve also...i feel so bad that i can't help him more..he is always laying down in the dark...i have to make him eat...he just is not hungry..you and Steve will be in my prayers and take care of yourself ...my hubby knows how much i love him and i know he loves me...and he would be taking care of me i know that...again take care and God bless...
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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suki444
Unregistered
posted
Hi Bartonella can cause neuro symptoms and seizures - has he treated this or could it have come back?
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
My lab manual lists one of the possible causes as Berberi or Thiamin (vitamin B 1 deficiency
I would bet he very low on B12 too Bea ask the Dr if they can load b12 injection at high doses for a few days or a week and see the responce.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Hubby is on IV heparin and also systemic enzymes (Vitalzym) for hypercoagulation. However, you can thin the blood, but if the blood vessels are constricted or too narrow oxygen still can't get through.
Will post another thread with more details, but to make a long story short hubby had a "spell" in the doc's office during our appointment. The regular LLMD was out of the office at a conference and the P.A. was confused to say the least.
The 2nd LLMD in the practice who has never seen hubby before told us more in 5 minutes than all the neuros hubby has ever seen.
His conclusion was that hubby was not getting enough oxygen to his brain and specifically the area of the substantia nigra which is what controls movement.
The new plan is to continue Cortef and to add Benicar. Hubby was not on any blood pressure meds because his B.P. is normal or even slightly low. Benicar is a vasodilator which is also supposed to have anti-inflammatory properties.
For now the Benicar seems to be helping -- hubby says his head feels a lot better. Less dizzyness and hardly any tremors today. Just hope his B.P. doesn't go too low.
This is sure one med I would never even have thought of. Not sure his regular LLMD would have thought of it either.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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