Hubby is back in the hospital -- was home for 3 days only.
The only reason hubby was even admitted to the hospital in my opinion is because of a fall in the ER -- he tried to stand up and use the urinal. Got weak and fell. Had previously been informed that the ER doc was going to discharge him after consulting with PCP and neuro. Think the hospital was just protecting themselves from any potential liability.
Had to stop IV Cipro due to severe headaches and return of encephalopathy. Pretty sure these are drug side effects -- most likely increased CSF pressure.
Had been expecting this, but still in shock anyway -- hubby's PCP is firing him as a patient.
LLMD has advised a drug holiday for a couple of months after discussion with PCP. Due to phone mixup PCP and LLMD talked, but we were unable to talk to LLMD ourselves -- had sent him a brief fax though.
Hubby is losing hope.
LLMD has no openings until January except for the previously scheduled 11/12 appointment. Looks like I will have to find some way to get hubby there -- whatever it takes.
In some ways feel hubby is the sickest he has been since he first got sick over 6 years ago.
Have a few leftover meds on hand and several unfilled scrips, but don't know what to do. If hubby has any more problems the current PCP would be his ER doc for either 1 month or 3 months -- not exactly sure of the law on this.
Many many decisions to make -- hubby just wants to come home and I guess that is what he will do tomorrow and we will just have to take a guess as to what to do next.
May not have much chance to get back to LymeNet right away -- will post more when I have some free time.
Please pray for Steve and I.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea, I'm so sorry. I will definitely pray for you two.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Oh Bea that's just terrible! I'm so sorry. I really hope things improve for you soon.
You both have my 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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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
dear Bea-
sending you and Steve prayers, and every good wish imaginable.
I am so sorry for the hell you both are going through.
love, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I'm on board.
Bea, if hubby is the worst in6 years, have you considered a different LLMD? We can't be all things to all people and I suspect LLMDs are no exception. People take you as fr as they can.
I would pick the top 5 in the US regardless of distance and call their offices. Tell reception what's going on, and ask whether the doctor has seen someone in Steve's state, and then B.) was the doctor able to resolve the symptoms for them.
I did this and I found the offices took me seiously and answered with the physician's response.
xoxoxoxoxoxoxoxo
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Cobweb
Unregistered
posted
AWW Bea-it doesn't get much messier than that.
I have felt like taking a med break-just to see what it would be like. But I am in better shape than your hubby.
What appears to be the end-may just be a new beginning.
Still sucks. Things may not seem so discouraging in the morning. Hope so.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Bea, I'm so sorry for both Steve and you. You're both under so much stress. I know it's difficult to get enough rest while in the hospital...people keep coming into the room and waking you.
Even being a visitor for the day is exhausting. But then, I have chronic fatigue, so everything is exhausting.
Please take care of yourself, so you can have the strength to care for him.
Thinking about you, Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Thanks so much for all the good wishes everyone.
CanBraveLyme -- Yes, have thought about finding a new LLMD -- hubby is on the 3rd one now. Big problem is finances and finding someone who will do phone consults. Really like your idea of interviewing docs -- ones I have talked to lately are not taking new patients or don't return phone calls etc etc.
Will keep looking, but a local PCP is 1st priority -- previous one was 6 hours away and hubby is too sick to travel that far on a regular basis.
Hubby is primarily worse since trying to treat Bart -- symptoms that had been gone for years are returning and new ones as well -- so hard to know whether it is better to treat aggressively or not.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi bea
I am so sorry what you & steve are going threw. It sounds like a real nightmare. Can really see why you would feel angry, frustrated, hurt abandoned & lost. It's is heart breaking to see what you two are going threw. Really sad, and I do feel for both steve and you I hope and pray you can find some help soon.
You know me, I just have to blow some sunshine your way...Maybe the short break will allow him to clear the toxins from the bart herxing? For me it is sometimes so hard to know while herxing, what's what. If I am getting worse or it's the herx. Can you do lots of detox stuff? How about trying some herbs? Not sure what else to suggest for now.
I will keep both of you in my prayers
Healing (((hugs))) Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Bea, so sorry to hear this.
I do worry that if YOU can't figger it out, it's gonna be one serious challenge for anyone else!!!
Have you done a blood smear for Steve at the Fry Lab? Sorry if you have posted that and I've missed it.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Bea -- so very sorry that you are both suffering so much.
In our personal experience, drug holidays in the case of extreme reactions have been quite helpful.
I think the problem we've run into in the past has been total body overload, with kidneys, liver, brain tissue, lymph system, etc. becoming overwhelmed with toxins from both the abx and the die off.
And, in some cases, flat-out drug intolerance.
The abx holidays we took allowed us to recover enough to begin treatment again. For me, these were also times to do whole-body detox.
I've become deeply wary of detox because 1) individuals have different detox needs and pathways, 2) some detox procedures by themselves can cause a toxin release that can make one very very sick (I have a good friend that was laid low by a "gentle" liver flush), 3) there's a lot of detox nonsense floating around.
Having said that, a graduated detox treatment during the drug holiday might be very useful. For me, helpful detox has sometimes been as simple as drinking lots of detox tea and doing mild colon cleanses.
I just want you to know that I fully understand your decision on doing the Cipro, and I'm very sympathetic to your hubby's misery. The oral Cipro worked very well for me, but was an extremely hard abx to take. You're caught between an intolerable disease and an intolerable treatment.
And I'm deeply sorry to hear about your PCP. I don't think these guys get what a profound and frightening betrayal it is when one of them says "Hey, sorry, I don't want to play with you anymore, and nobody else does either, too bad for you." I get that it's frightening for them, but hey, when the going gets tough, I don't think the tough get to go right out the door, do they?
You and Steve will be in my thoughts.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
After 6 years it would seem they must be missing something; maybe checking in with a a different doc is the thing to do, Given my experience, I always suspect co-infections, but there could well be other factors which apply to your situation. How much emphasis was placed on diet and supplement, including herbal? I felt these made a huge difference for me. (they were advised by my doc). And home is best healing environment, by far, in almost all cases (no doubt including yours, I suspect, from the fact you posted this!)
A "holiday" from at least some meds is advice I've gotten when difficulties arose in my treatment; the lyme isn't going anywhere for a while, and the the body's immune system may gain strength faster. Meanwhile use your time to assess the options!
Best of luck. I hope that, at each moment you can assess the situation and take the optimal path. DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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bettyg
Unregistered
posted
STEVE AN BEA
i've never know one couple who have gone thru the hell you 2 hav; murphy's law!!
pcp firing you to boot.
have you looked into angel flights if you meet their criteria?
best wishes and thank you for all your personal experience you share so others will not hvve to o thru the hell you have! bettyg
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Bea,
I'm praying for you and Steve. Roanoke is only an hour up the road. Please holler if there is anything I can do to help.
I can't recall you ever talking about Steve's diet. I know that sounds too simple to be helpful, but nutrition is the foundation upon which the body can heal.
If he is not a stellar eater, then changing that aspect can only help. Fresh juicing of organic vegetables (probably tough to come by in Martinsville?)can send loads of nutrients straight into his bloodstream.
I'm not suggesting he give up anything else, just add the most nutritious diet possible to his regimen. It was the first big turning point for me.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Bea,
First I am sending positive thoughts and healing prayers to your husband and you.
Please know that God does not close doors without opening windows.
Please don't lose faith or hope.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
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Member # 12041
posted
thinking of you and your husband....
Posts: 3905 | From USA | Registered: May 2007
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Bea,
We are sending all our love your way.
I think I may be able to help you in terms of sharing my medical team solutions, because for all intents and purposes I am in a remote place when it comes to Lyme.
Guess who was also fired from their PCP?....Moi!
This was a blessing because you need to surround yourself with people who are on board, though it was a complete shock and I felt quite abandoned at the time.
1) I have found an EXCELLENT homecare nurse and she has been absolutely invaluable in terms of helping me to navigate the medical system. An excellent nurse, homecare or otherwise, will be your medical consultant. If the first nurse who arrives isn't the type, request another because, in Canada at least, there are some excellent nurses and some of them know the flaws of the system and can help you navigate. A nurse will stick by you, and you need 1 consistent medical professional.
2) Accept the fact that you are going to travel wherever you are most likely to get a remission or cure, because hubby's situation is so critical. I trusted my "local" lyme duck to the extent that I spent far more on living expenses than I would have on travel and medical expenses had I seen someone more appropriate. Since seeing Dr. S. (I'd called around and felt Dr. S. was my best bet for what was going on with me), he has turned me around from - (minus) 10% functioning to 50% right now, which is 6 months later.
3) Dr. S. tells me he works with a neurologist, which tells me that there are neurologists out there who know about Lyme. To what extent, I don't know.
I needed a neurologist. Steve needs a neurologist.
What I accepted is that if I see a neuro who doesn't know about Lyme, I can expect him _only_ to deal with my symptoms.
I got it right on Neurologist #3:
Make sure you're well dressed (I'm sorry about this), and Steve as best as possible, put on make up and look as business-like as possible.
Then, because I'm a musician, and that apparently garnered being assumed a dolt by the neuro #2 despite my attempts to salvage the situation by telling her I'd worked at one point for an internationally respected museum, it was too late. I wasn't being taken seriously.
On meeting neuro #3, when he asked what I do for a living, I said, "Business Owner", which is true. Later he was much more respectful when we got into more detail, because by then, plus the clothes and make-up, I'm considered worthy. Pathetic to have to go through all this in my opinion, but there you have it.
4) Interview PCP's. In Toronto, the word on the street is it's hard even to find a family doctor, but the reality is that with some calling around and asking I managed to "interview" 3 PCP's so far, and I have an appointment with PCP #4 in early November. PCP #3 was best so far with, "As a doctor when you tell me your story it's humbling, because we see so many rashes." He said he would look at the ILADS website.
5) Don't get into too much of the history of dolt-ish doctors. Focus on where you are now and what kind of help you need specifically from that person. Lyme is a hot potato.
6) If the LLMD you choose is far, perhaps your current LLMD would be willing to work with him. Be careful as too many cooks can spoil the broth, and have it clear in your mind the deliniation of the roles of the two LLMDs.
This is what I've done. It's not ideal; ideally I would move near the LLMD, but I'm not well enough to take a job right now, etc. etc.
To recap:
1. I have a nurse who is the medical consultant.
2. I have an ILADS member doctor in a city 5 hours away in the same province who is amenable to following Dr. S.'s lead.
3. I see Dr. S. in person every 3-4 months for first 3 appointments so far. Once things are sufficiently stable, I will choose the option of doing phone consults every second appointment. I want for him to see for himself where I am at, and develop rapport, because we're not kidding around here.
4. I have a neurologist who I do not give the option to examine the Lyme possibility. He can deal with my symptoms.
I tell him I am satisfied with my Lyme diagnosis (I am), and the proof is in the pudding and here I am better than 6 months ago after all this.
5) A PCP for other things that might crop up. I don't expect him to deal with Lyme.
I apologize for the length of this, but if there are any things in all this that are helpful to others, this is why I am posting.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
Is "PCP" like a "regular doc"? (I always thought it was a horse tranquiler...) I guess it would be good to have for other issues and a second opinion, but it seems like too many docs in this category are less than useless for lyme. If your lyme doc is the "Dr.S." I know, you shouldn't need another doc. (but he would probably have you on herbal supplements of various sorts, it would seem!)(but not totally sure about that..) DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I am so saddened to hear this. I know you have treated all infections.
I have saved many of your posts where you have talked about the herbs and other complementary supplements that you have used.
luvs has spoken highly of a naturapath (I think) who has helped her. Maybe he could guide you through Steve's time off abx if that is what seems best.
I will pray that you find that PCP to trust and give Steve care.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Haply Careless Dave,
It's not ideal.
Dr. S. is my Lyme specialist.
The Canadian medical system is a lot like Keiser, from what I gather. If you're seriously ill, it really helps to have a nurse.
So, my nurse helps me navigate when things are critical. She also administers my bicillin shots. Provided my health continues to be stable, I will learn to do my own shots and be discharged! But I know where she is if I need to consult.
In Toronto, where I live, I have:
1) A homecare nurse, whose role I've described.
2) Looking for a GP who (like the PCP from what I can tell) keeps an eye on my blood levels, deals with non-Lyme related things, and deals with referrals to specialists if needed.
3) After experiencing such a dramatic turnaround on Lyrica, Dr. S. suggested I need a neuro, and I agree. I now have a neuro and have had a sleep-deprived EEG within a week of seeing the neuro for the first time (what a relief to finally be taken seriously by a neurologist!). I'm on a list for an in-patient EEG where they monitor you 24/7 and slowly take you off meds if need be. I don't expect he's going to find seizures on an EEG (because so few of us do), but if the Lyrica stops working, I have someone who is willing to treat idiopatically.
4) Dr. ILADS member in other city in same province. Sorry Dave, I can't get into this here. If you're interested, PM me.
5) The illustrious Dr. S. who is in the process of saving my life. Thank you Dr. S.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I want to thank everyone who has taken the time to respond. It does help to know others are thinking of us and it never hurts to have good advice repeated.
I am typing this from hubby's hospital room -- doesn't look like he will be going home for a while and may still end up being transferred to another hospital. Just taking it one step at a time.
For those unfamiliar with hubby's history here is a link to a very long thread I posted when I first joined LymeNet. Lots more treatment (both traditional antibiotics and alternative therapies) since then, but not much lasting improvement in symptoms unfortunately.
Do I think 18 neurologists (or maybe it is 19 -- I've lost count) could be wrong or could have missed something -- ABSOLUTELY!!!! Or the 6 gastroenterologists -- ditto.
The major thing they all missed or dismissed is Lyme and other tickborne infections -- specifically Babesia and Bartonella.
Michelle -- The Fry Lab is what got us into this mess -- hubby finally had positive tests for Babesia and Bartonella and we started treating them more agressively.
We had thought the Bart was gone as it was a clinical diagnosis and hubby had his 3 months of Levaquin. But based on recent med responses I am begining to think that is hubby's worst problem -- I just didn't make the connection between his symptoms and Bart before.
The irony of the situation is that hubby has always only treated one infection at a time and usually with only one antibiotic -- two at the most. And in the past he always took a drug holiday in between each new med.
He has been on antibiotics for the longest continuous time this past year -- 7 months. But he already had a 3 week drug holiday in September when the gastritis was diagnosed.
As for diet -- hubby really tries -- he is gluten-free, dairy free, sugar free and uses Stevia instead of articial sweeteners. When I have the cash we spend $500 or $600 a month for herbs and nutritional supplements.
CanBraveLyme -- Hubby needs a PCP to prescribe IV Ativan for tremors/myoclonus/seizure-like episodes and IV Demerol for muscle rigors -- a new symptom since July. LLMD cannot prescribe controlled drugs across state lines.
After 4 years away from home we moved back to our apartment when Babesia treatment initially drastically improved symptoms. Hubby was referred from doc to doc. Babs relapsed and now we are stuck. No money to travel.
Reviewing hubby's summer I am convinced that the agressive treatment of Babesia (Fry Lab says it is gone!!!) brought out the Bartonella which seems next to impossible to treat at this point.
Also just realizd that the Clindamycin used with the quinine may have worked on the Bart -- we may have been treating the Bart without realizing it. When we stopped the quinine/clindamycin and switched to Primaquine and Chloroquine is when things went from bad to worse. On a positive note, Babs symptoms have not come back. ------------------------------------------------
Found hubby unconscious? and unresponsive in the a.m. for 3 1/2 hours. Muscle rigors and tremors finally relaxed and PCP agreed to switch to a different IV antibiotic -- ampicillin -- it's a start anyway.
Hubby was confused and thinks the helicopter moved him to a different hospital. Anyway he has been sleeping somewhat peacefully for last 3 hours.
The doc said this morning that it looked like hubby had torticollis -- spent the morning researching and am not surprised to learn that that symptom can be caused by encephalitis or meningitis or even Borna virus (hubby has positive tests for that) or pseudotumor cerebri.
Torticollis is an abnormal twisting of the neck. Hubby's head always pulls to the left when he has bad tremors/myoclonus/muscle rigors. This was happening long before he started the IV Phenergan -- docs explanation was this was a med side effect.
I don't know what other signs they think they need to prove an ongoing neurological/brain infection. Hubby once again complained of severe headache overnight which triggered his spell.
So far docs have refused to do a spinal tap. But that may still be the only way to get through to them.
Hanging on as best we can for now.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Sending Good Wishes
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
steve & Bea
still in my thoughts & prayers Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Bea, dear... *too many meds*. A body is only a body. Slamming a body with very potent and possibly toxic drugs with the idea that the drugs will kill bugs...and then other bugs come out...if indeed this is the case (and if his symptoms are not just from drug toxicity)...it means the immune system cannot handle its own bugs. Rest, restore. Drug holiday. Just calming drugs for CNS (ativan, whatever) so no seizures. Just my 2 little cents. Best thoughts to you both.
Posts: 2276 | From united states | Registered: Jun 2004
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bettyg
Unregistered
posted
quote:Originally posted by 5dana8: steve & Bea
still in my thoughts & prayers Dana
bea and steve, the same from me! it's been unbelievable watching you 2 travel for the psst 3 years i've been here.
bea, your educationg us on every new thing tried on steve. your PERSISTENE, YOUR 24/7 LOVE FOR D\STEVE just makes me cry for the love you 2 have for each other.
canbrave, great advise for bea. bea, it' just not fair you 2 have had to go thr an STILL go thr so much BS! can't type anymore, crying for all the pain and suffering you have both been thru!!!!
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Cobweb
Unregistered
posted
my daughter is gluten free, diary free, sugar free etc-but i was surprised with antibody assessment for common allergen exposure showed she also should not be eating bananas, peanuts , soy or chicken!!!!
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Bea,
Are there any ILADS members in the same state as you? In a different city shouldn't matter? Even if you've seen them previously, perhaps they would be willing to prescribe, and follow your main LLMD's lead?.
In Toronto, my experience has been I was taking the GP (PCP) outside his comfort zone, so at some point he was going to fire me.
Alternatively, I think another attitude to take is if you _can_ find a PCP to prescribe, with the attitude that s/he is going to fire you at some point, then you will be emotionally and prepared on a practical level with a backup list of a couple of PCPs for when it happens. If not, all the better.
I hope this is helpful. Thank you for providing the link to your detailed story. I'm working my way through it.
May you both be free from enmity and danger. May you both be free from mental suffering. May you both be free from physical suffering. May you both take care of yourselves happily. A Buddhist Blessing
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Bea Dearest,
I'm so glad the Fry Lab at least confirms the babesia is gone, if not the bart.
Why won't the doctors do a lumbar puncture on Steve? Do they fear it will cause him more seizures?
It certainly seems it could be a useful test, and I am definitely not one to usually say that.
Hugs to you both.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Bea,
I just read (as best I can) your long post. Sending more blessings.
I see GABA was brought up. I am now on Pregabalin, which is the next generation from Gabapentin.
The Gabapentin basically didn't work. The Pregabalin (Lyrica) helps.
Pregabalin is often prescribed by Dr. S. in CA for those Lyme patients who are experiencing seizures.
My problems are not as advanced as Steve's but as you recall my gut was involved. I became convinced (after 4 years) that the issue was neuro.
Now, on Pregabalin, I'm up to 9 days without a serious event that involves vomiting. I believe that if I manage my energy correctly that I could get up to 3 weeks with no major events.
But, for Steve, perhaps it might at least take the edge off. Mentioning this because of your experience with Gaba not doing anything, and perhaps you might not discuss Pregabalin with Steve's doctors.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
I don't post much, but I read the forum alot. I so admire you and your perseverance.
I was struck by the fact that Steve is getting IV Demerol. My daughter just started with a new pain doctor. In our discussion about pain meds, he said that he thought demerol was about to be taken off the market. I think he said because it caused siezures, but he thought it was a very dangerous drug. It has been my experience that doctors don't look at problems being related to a drug side effect, even if it is listed as a possiblity by the drug manufacturer. My daughter took a drug for a while and began to have some different problems. I thought it was from this particular drug. It took me a year to get a doctor to take her off of it and it took care of the problems.
I don't know as much as you, but you might pursue drug side effects even on things he has taken for a while. Praying for renewed strength and wisdom for you.
Posts: 177 | From God's Grace | Registered: Apr 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Bea, you and Steve are in my prayers as you go through yet another unbelievable trial. I'll send you a PM with some info. I don't know if it will help, but it can't hurt to check it out.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Thanks again everyone for the encouragement and kind thoughts.
Visionoftruth -- Very aware of meds hubby's is using and potential problems. I am the one who has to buzz the nurse asking where is the 3:00 dose etc.
Anyway, Demerol is only the 2nd narcotic hubby has been on. Was on IV Diluadid briefly ( 2 -3 weeks last spring). On IV Demerol only since mid July -- 25 mg 1 -3 times daily. Not being used for pain, but for muscle rigors. Initially effective, but doesn't work when encephalopathy is present. Also, causes G.I. to slow down at higher doses.
Reason I thought the IV Cipro would work was that hubby had one day in the hospital last week where he did not have any muscle rigors and did not need the Demerol.
As for the IV Ativan -- that is my gauge as to how he is doing overall. Less symptomatic equals lower dose. For about 2 1/2 years we used this PRN -- not on a schedule. Ususal dose had increased to about 5 1/2 mg.
When hubby had the crisis last Jan/Feb we put the IV Ativan on a schedule. When Babs meds were working (Clindamycin/Quinine combo) I was able to reduce dose to 3 1/2 mg within a couple of months.
Current PCP has hubby on 8 mg daily when in the hospital. Does concern me. Was able to get that back down to 5 1/2 mg after 3 week hospital stay in July.
Don't think there is a major dependence issue going on. Often wish we had never started down this road with this med, but didn't know enough or have many options back then.
Thanks for your concern.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My heart aches when I read your posts. I hope and pray you find some relief for your husband soon.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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I do appreciate your concern. Hubby's mother was a pharmacist so he knows quite a bit about meds from long ago.
When he first got sick and was on oral Ativan a doc tried to switch him to Klonipin -- he could not tolerate that med -- made mood swings 10x worse.
He has a very fast metabolism. Current dosing is every 3 hours on IV Ativan. When I was decreasing his dose I increased the time between doses from 3 to 3 1/2 hours and then to 4 hours.
My personal opinion is that anything above 5 or 6 mg is just not effective -- just adds toxicity. However, the PCP is the one who set the dose schedule in the hospital. It is easier for the nurses to give meds every 3 hours and to give the same dose every time.
At home I give the med every 3 1/2 hours and give 1/2 mg for all except a couple of doses early in the morning when he got 1 mg. This is what works for us.
When hubby took oral Ativan for his mercury toxicity problem -- he was able to decrease from 6 mg daily to 1 mg daily in 9 months or so. He had no problems with withdrawal then, but was only on the med for about 15 months total I think.
Also during the first couple of years when hubby was on the IV Ativan and using it PRN he actually had 3 or 4 days when he took no Ativan and didn't have a problem with withdrawal.
Everyone is different. Ativan is the only med (besides selected antibiotics) that has had any effect on hubby's tremors. He was prescribed at least 10 -15 different psych meds over the years and those caused numerous side effects. Coming off the Celexa and Zyprexa took a long time. None of the half a dozen seizure meds were of no benefit either.
Hubby has been getting IV glutathione 4 or 5 times weekly for as long as he has been on the IV Ativan -- maybe that has something to do with his tolerance of the med.
Thanks for your insight. I just don't think the Ativan is a major issue right now. SPECT scan done in June 2007 showed no evidence of anxiety/depression pattern -- think there would have been a different test result if the med was a major problem.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Never said I wasn't worried about hubby taking the Ativan -- but I do want to add a couple of notes regarding hubby's symptoms. I keep reasonably detailed notes.
What I thought were actual tonic/clonic seizures -- with loss of consciousness and loss of bowel and bladder control started over 3 years ago before switch to IV Ativan. Was on oral Ativan at the time -- can't remember the exact dose at the time but I think it was 2 or 3 mg daily
-- anyway the trigger for these episodes was starting treatment for tickborne diseases with an herbal formula from a chiropractor in Kansas (author of a couple of books on Lyme). Hubby had had no antibiotics at the time.
Tremors started at dose of 1 mg Ativan orally and progressed to myoclonus within about 2 or 3 months. Hubby remembers all these dates better than I do and they are all documented in numerous medical records. The neuro symptoms have progressed steadily regardless of his use and doseage of Ativan. At times it does mask the severity of the underlying neuro symptoms, but that is what it is used for -- symptom control.
Encephalopathy symptoms -- loss of consciousness for extended periods of time with mental confusion, stiff neck, light and sound sensitivity etc were all triggered by med changes related to various antibiotics for tickborne illnesses.
Hubby has had numerous neurotransmitter tests and amino acid profiles done. Supplement to balance things as best we can. Mood swings are just not an issue for the last couple of years whether he is at 3mg or 8 mg.
The main issue is that he stopped all psychotropic meds (other than Ativan) and switched to 5HTP and Sam-e plus some other supplements and his G.I. was somewhat healed (nausea remained, but actual gastritis and weight loss were under control).
Hypoperfusion will never be diagnosed by a neurologist doing a bedside neuro exam. Encephalopathy symptoms are almost always downplayed and vary rarely believed to be real by neurologists. Tremors can always be passed off as anxiety.
This is the old IDSA arguement regarding objective symptoms. I am sure hubby is only one of many tickborne disease patients diagnosed as psychiatric.
Even without the meds to tone down the tremors/myoclonus etc I only know of a couple of neuros in the country who recognize Lyme and other tickborne illnesses based on neuro symptoms alone. Without positive serolgy very few docs will treat and when you have positve PCR tests and negative Elisa and Western Blots forget about any help from anyone other than an LLMD.
I certainly don't advocate anyone overdoing the benzo drugs, but sometimes you have to do things you aren't happy about given the alternative of doing nothing. Most people with headaches or other pain problems don't try to just live with the pain to prove to a doc they are sick. They take whatever seems to help with the symptoms.
If you have severe tremors/myoclonus 24/7 you need to take something to relieve the symptoms so you can sleep as well as possible and try to function during the day. Yes, Benzos are potent meds with side effects the same as any drug -- but for hubby the alternative of 3 psych admits and no life at all is not something I want to return to.
The recent exacerbation of symptoms has been triggered by antibiotics all specific to Bartonella -- hubby's least treated infection.
This is the end of my discussion regarding Benzo use. Have had this discussion with many docs and I am starting to think like hubby -- he is tired of reciting his medical history to docs who don't listen and ignore test results in favor of their opinions.
For example -- how do you fake a SPECT scan -- I don't think it can be done.
Vision, none of this is directed at you personally -- just getting tired of arguing with docs on daily basis.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Bea
It amazes me how you are so organized and skilled. Your lymenet friends keep you in their prayers.
Keep up the communication when you are able.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Bea, nothing I can say to ease your mind..... just wanted you to know when you are sitting there alone at night I'm thinking of you and your husband and sending all my warm and good thoughts your way.
I'm sure your husband knows he has a treasure in you!
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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