posted
Husband very acutely ill since Jan.1,2018. Have noticed sx of fatigue, loss of stamina, loss of interest in many things, depression.sensitivity to cold, short tempered, 'foggy brain', memory loss (this is not my husband) etc. chronically (2+yrs. I am RN who has been seriously concerned for all this time. He developed 10/10 (see WHO pain score) headache (HA) and night sweats since early January of this year. Refused to seek care until he briefly fell asleep at wheel returning home from work. MD followed him for 2 weeks, ordered appropriate initial tests tried doxy as we are in heavily affected ares for Lyme, (I already had him on appropriate OTC meds for pain(see WHO pain ladder and meds), MD ordered narcotic meds appropriately as next step. After 2 weeks MD told him he needed hospitalization. Took another 4 days for him to realize and then presented to ER. Was admitted and after a few days and much testing was found to have meningitis. Was then sent on to appropriate hospital for further testing to include arteriogram, temporal artery biopsy etc. Tests for Lyme continued negative (not sure of exact testing for tick borne illnesses but have all records). Was treated empirically (not knowing exact diagnosis) for viral meningitis with a 'blast of Prednisone- 1,000mg IV x 3days. and released to home. HA was back in 2 days. More tests and taper of Prednisone (60mg - 10mg over 12 days). HA back at 30mgs. Again more tests and another taper. At this point husband and I mutually separated. He is with daughter who is a nurse and her husband and young family. We have 6 adult children and 13+ grandchildren, 2 greats. We have an awesome family who have all been greatly hurt to see Mom and Dad separated. (We were driving each other crazy, me being the nurse and he in constant pain, on Prednisone with all attending side affects, etc.). This is destroying our beautiful marriage and our family and friends to see us go through this. Often throughout this I have stated I was "going to Washington", i.e. to testify re this dreadful time for our family, the sometimes poor care he has received etc. Despite the pain, the gut wrenching tears alone, in bed, the anger, I have perished. I have backed off from his care, finding out how he's doing through children. We occasionally see each other for brief meetings re finances, home etc. I see that he is always in pain (I'm also ANP and CHPN-Adult Nurse Practitioner, Certified Hospice and Palliative Nurse). I know the FLACC score(scoring used to rate one's pain when patient cannot speak/communicate). One eek ago he had a red hot joint (elbow). Friday (2 days ago) he was seen in follow-up of 3 ER visits over 5 day period by his primary care doc. Now positive babesia test, which tells me he probably does have Lyme and perhaps Ehrlichia). And tests show he has had it a very long time. I'm at once relieved, frightened for future (what does future hold re any long lasting effects), my poor family who continue to be so affected etc. And I'm angry. Should it have taken this long to get a diffinative dx? I've been sure he had Lyme for months. I have had Lyme quite a number of x's and also Babesios and Ehrllichia (Anaplasmosis) and have been very ill, Childrena nd grndchildren as well to include heart block in 19 yo (at the time) son and Bell's Palsy in 5 yo (at the time) grandson and (first in family) 6 yo (at the time) son in late 1980's who had severe HA, lumbar puncture etc and thankfully, back then, a pediatrician who recognized Lyme and treated him. (thank-you Elliott!), although he has had chronic generalized anxiety and I wonder about lasting effect of Lyme. I was very sick with Ehrlichia, having a pancytopenia (drop in all in Complete Blood Test[CBC]). I've had Lyme atlas 5-6 x's sometimes being treated some times not. The testing during the Erlychia showed positive for Babesia drawing a call from local Health Dept (then in late 90's). Even our pet dogs have suffered with Lyme. I want my awesome husband back and life to be normal again, it will never be the same, I know. The grieving my family, my husband, myself and my friends have been through is horrific. As yet there is no plan of care - more tests are pending.
-------------------- Margo Milne Posts: 1 | From 02874, USA | Registered: Apr 2018
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
isn't prednisone a steroid? that's a big nono for lyme patients. unless it's absolutely life threatening. I wouldn't take it unless I was bleeding out....but that's jus me.
im so sorry to hear of your family problems. we've been through some times too and I almost left a couple.
lyme ruins lives. I pray you can get back together.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to Lymenet Marge
Your story is heartbreaking. I am so very sorry for your sufferring.
First, you need to delete your name as this is a public forum. Change your user profile. Then edit your post to remove your name.
You need not travel this nightmare path alone. Really relieved you found your way to Lyment. Lyment saved my life and many, many others. We offer suggestions, encouragement, and genuine compassion for all Lyme sufferers.
The main stream medical community is clueless when dealing with Tick Borne Diseases. You need to find a Lyme Litterate Medical Doctor(LLMD), a specialist who's medical practice revolves around the latest treatments for this horrific epidemic.
You should also think about joining your area's local Lyme support group. They will help you find resources for yourself and your family to get on the proper path towards healing and wellness.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
And why BIOLOGICS that also dampen immune function can also be just as damaging if infections are not being properly identified & thorough addressed. -
[ 04-29-2018, 12:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations. What patients call a "LLMD" a lyme literate medical doctor and why that matters so much.
Be sure to learn how very different each tick-borne infection is from all others. Each are very different and each require very different treatment methods, too.
Global Lyme Alliance -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Whatever treatment path chosen (and all through the rotations and combinations required of any treatment plan) . . . or even while one is trying to find a proper doctor, liver support is vital - and it can help relieve pain to varying degrees along the way.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
[I split up Margo's post for this of us who have difficulty reading dense blocks of text. Ann]
(from Margo)
Husband very acutely ill since Jan.1,2018.
Have noticed sx of fatigue, loss of stamina, loss of interest in many things, depression.sensitivity to cold, short tempered, 'foggy brain', memory loss (this is not my husband) etc. chronically (2+yrs.
I am RN who has been seriously concerned for all this time.
He developed 10/10 (see WHO pain score) headache (HA) and night sweats since early January of this year.
Refused to seek care until he briefly fell asleep at wheel returning home from work.
MD followed him for 2 weeks, ordered appropriate initial tests tried doxy as we are in heavily affected ares for Lyme,
(I already had him on appropriate OTC meds for pain(see WHO pain ladder and meds), MD ordered narcotic meds appropriately as next step.
After 2 weeks MD told him he needed hospitalization. Took another 4 days for him to realize and then presented to ER.
Was admitted and after a few days and much testing was found to have meningitis. Was then sent on to appropriate hospital for further testing to include arteriogram, temporal artery biopsy etc.
Tests for Lyme continued negative (not sure of exact testing for tick borne illnesses but have all records).
Was treated empirically (not knowing exact diagnosis) for viral meningitis with a 'blast of Prednisone- 1,000mg IV x 3days. and released to home.
HA was back in 2 days. More tests and taper of Prednisone (60mg - 10mg over 12 days). HA back at 30mgs. Again more tests and another taper.
At this point husband and I mutually separated. He is with daughter who is a nurse and her husband and young family.
We have 6 adult children and 13+ grandchildren, 2 greats. We have an awesome family who have all been greatly hurt to see Mom and Dad separated.
(We were driving each other crazy, me being the nurse and he in constant pain, on Prednisone with all attending side affects, etc.).
This is destroying our beautiful marriage and our family and friends to see us go through this. Often throughout this I have stated I was "going to Washington", i.e. to testify re this dreadful time for our family, the sometimes poor care he has received etc.
Despite the pain, the gut wrenching tears alone, in bed, the anger, I have perished. I have backed off from his care, finding out how he's doing through children. We occasionally see each other for brief meetings re finances, home etc.
I see that he is always in pain (I'm also ANP and CHPN-Adult Nurse Practitioner, Certified Hospice and Palliative Nurse). I know the FLACC score(scoring used to rate one's pain when patient cannot speak/communicate).
One eek ago he had a red hot joint (elbow). Friday (2 days ago) he was seen in follow-up of 3 ER visits over 5 day period by his primary care doc.
Now positive babesia test, which tells me he probably does have Lyme and perhaps Ehrlichia). And tests show he has had it a very long time.
I'm at once relieved, frightened for future (what does future hold re any long lasting effects), my poor family who continue to be so affected etc.
And I'm angry. Should it have taken this long to get a diffinative dx? I've been sure he had Lyme for months. I have had Lyme quite a number of x's and also Babesios and Ehrllichia (Anaplasmosis) and have been very ill,
Childrena nd grndchildren as well to include heart block in 19 yo (at the time)
son and Bell's Palsy in 5 yo (at the time)
grandson and (first in family) 6 yo (at the time)
son in late 1980's who had severe HA, lumbar puncture etc and thankfully, back then, a pediatrician who recognized Lyme and treated him. (thank-you Elliott!),
although he has had chronic generalized anxiety and I wonder about lasting effect of Lyme.
I was very sick with Ehrlichia, having a pancytopenia (drop in all in Complete Blood Test[CBC]). I've had Lyme atlas 5-6 x's sometimes being treated some times not.
The testing during the Erlychia showed positive for Babesia drawing a call from local Health Dept (then in late 90's). Even our pet dogs have suffered with Lyme.
I want my awesome husband back and life to be normal again, it will never be the same, I know.
The grieving my family, my husband, myself and my friends have been through is horrific. As yet there is no plan of care - more tests are pending.
-------------------- Ann-OH Posts: 1589 | From Ohio | Registered: Aug 2014
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Whether this is Lyme of something else, let me tell you that there is hope. I was in your husband shoes, and some doctors told me they were unsure if you can undo the damage done from Lyme. Let me tell you that you can regain your mental ability and happy demeanor. He might have to take some happy pills or something for a while until you find a cure, but it is possible. I was lucky to be able to find a doctor who provided the prescriptions I needed until I found a cure. It is a tough road, but do not give up on him. You might just have to walk-away from time to time. Realize when he is in one of those moods and explain to him that he is not himself. Also, if it is anything like what I went through, he is probably dealing with suicidal thoughts. He is not in a good place, but there is hope.
Posts: 22 | From wv | Registered: Mar 2018
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posted
Wow .. So sorry to hear this! Believe me, you are not alone in your fight!!
First and foremost: FIND THE BEST LLMD YOU CAN!! If you need to travel for that, do NOT hesitate. You cannot afford to "settle" for a doctor who doesn't know how to treat this.
Ask on this board and others (if needed) to get opinions on the best doctor.
Hang in there and do not give up!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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