posted
Can't say when she contracted it because she was bitten many times over the years yet ignored bulleyes and swollen glands.
Problem is, even tho she recently tested positive, she's viewing her symptoms (double-vision, weakness, depression, pain, and more) as non-related.
Situation is compounded because of cervical diskectomy in March (for neck pain) which did not relieve pain. So she blames pain on 'botched' surgery.
Complications arose immediately after surgery. Excruciating arm, shoulder, rib, and back pain. So weak she fell to her knees trying to stand.
Was prescribed many drugs in an attempt to control the pain which gave her lots of bad side effects (but in looking back, I think they were Lyme symptoms).
At that time, she did NOT know she had Lyme.
I'm thinking it was lying dormant and when her resistance was low due to invasive surgery, THAT is when it attacked her body and caused all the things we blamed on side-effects...
Because it was those so-called side effects that ultimately made me take her to get tested.
She has many other symptoms but these are the ones really getting to her:
1 - She describes neck pain as if someone turned her head completely around (like the Exorcist) and stretched all the muscles.
2 - Her upper back pain spans from the armpits to shoulder-blades, but not in middle at spine.
She describes this as though someone is trying to pry apart her shoulder-blade bones with a knife (not behind the ``wing'' bone but actually within the bone itself).
3 - Lastly, there's pain in one shoulder which she blames on torn rotator cuff.
Another problem is, she's had back issues/surgeries her whole life as well as the other rotator cuff repaired.
Therefore she's familiar with pain and just assumes it is a symptom non-related to Lyme.
But with all my research, it seems it `could' be from it. What do ya'll think?
I can't seem to get her connect ANY of her symptoms to Lyme and therefore she wants to go off the Doxy due to the nausea.
And she won't follow any of the suggestions from this forum on what may help nausea.
I know it can affect the mind, too, so I give her the benefit of the doubt that she's just not comprehending things.
For example, after complaining of double-vision, I told her it was a symptom. She acknowledged the info, yet a few days later she wanted wanting to go to the eye doctor for a new prescription (she wears glasses).
She complained about having to taking the Doxy for 4 wks when she'd already taken it previously for 2 wks.
So I have to remind her about the 4 week gestation period and the dormancy and that THAT is why you need a continuous 4 wks of Doxy. That 2 wks and then a gap and then 2 more wks of Doxy aren't the same. And I know I've told her this at least 5 times already.
It's like she WANTS to have these things be permanently wrong with her instead of knowing they come from the disease and may go away with treatment.
I don't know if, like I said, it comes from her brain being affected.
Or if she just doesn't want to accept advice from ME (because I'm not an MD).
Or if it's `the daughter' taking care of `the mother' thing that she can't handle -- or what?
So I'm reaching out to you guys for two things:
One - anyone experienced similar pain? I know there's all sorts of pain (I've read and read so much on here already). So not to be rude or unappreciative, but just looking for similar pain experiences.
Two - this woman has survived cancer, many surgeries, broken bones, etc. so she's normally a positive, strong-willed woman and does not like pity. She's 82 but prior to Lyme, acted 62.
She was very bright and independent so I know this is hard for her.
But how do I deal with her inability to accept what I've learned about all that Lyme can do to a person?
I'm just so frustrated I want to cry.
I spend hours educating myself so I can help her but it's like it goes in one ear and out the other,
BTW - Hasn't yet seen a LLMD. She IS scheduled next month with a LL infectious disease MD.
Thanks so much, Bonnie
Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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I think the best thing you can do for her is keep giving her information (suppport group, Under Our Skin, articles) in different formats or until it becomes her idea. I hope that helps somehow.
IMHisda
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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bettyg
Unregistered
posted
the part that bothers me she is going next month to ll INFECTIOUS DR. who does not believe in chronic lyme and who treats for 3 weeks and under!
she is also in denial. i do like suggestion of watchign under our skin or go to my post in SUPPORT and look at some of these LYME VIDEOS ... short!!
best wishes; you have your hands full.
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quote:Originally posted by bettyg: the part that bothers me she is going next month to INFECTIOUS DR. [/QB]
Amen!!!
Sounds like she is really struggling mentally. I'm sorry you are going thru this. I feel that my mother had Lyme and babesia but it was too late for her to be treated.
Yes, Lyme can cause terrible pain. It's been documented that it can be worse than post-operative pain.
Perhaps a good LLMD can prescribe bicillin shots instead of oral doxy for her. Do you think she could tolerate shots?
And of course, IV would also be a possibility.
Hang in there, and keep posting here so we can help you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
When I first say the heading, I was ready to say "not everything is lyme" but you, very wisely, started off with:
" . . .Can't say when she contracted it because she was bitten many times over the years yet ignored bulleyes and swollen glands.
Problem is, even tho she recently tested positive, she's viewing her symptoms (double-vision, weakness, depression, pain, and more) as non-related . . . ' end quote.
Good reporting on your part, putting the most important stuff right up front.
A bulls eye is always lyme.
Ignoring the history, severe symptoms and a positive test has you understandably concerned.
It is very hard to be in the position you find yourself. I will post many links to books or articles that may help.
First, I warn you, it might be overwhelming. I have chosen these to make a point - to show the research and the connections.
So, as I'm often in a protective mode and I know how devastating all this can feel, it might help to look at this as a research project.
If you can share information from experts with your mother, it may help her see that although treatment can be difficult, it might help increase her chances for success.
And, all that said, we all know treatment of lyme is not as easy or clear as we'd like. There are some alternatives, but if you pursue those, be very sure whomever you work with is very well educated in the ILADS research so they know all there is to about these tick-borne diseases (TBD) and the coinfections.
If your mother may be open to complementary methods, I will post some of those offerings that are specific.
I'll hold off for now so you won't be swimming - but I have in mind books by Buhner and Zhang and info. on the Bionic 880 - a treatment being done in Germany without drugs that has had a fairly high success rate.
Still, starting with education materials, links will follow. And, regardless of the stage, improvement is possible.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================== =====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sorry, I could not resist making sure you had a variety of options - just in case you are interested. So, some of the complementary links below for you to consider or file for future reading.
There are many ways to succeed. Your mother is very lucky to have your eagles eyes and sharp brain.
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
poster's note: while few get well without attention to nutrition and supporting the liver and adrenals with specific supplements, anyone considering complementary approaches should be sure to have first read the abx protocol for a better grasp of the task at hand and the nature of these infections.
Basic, supportive herbs to "get the body stronger" are NEVER enough to get over lyme or coinfections. Very specific attention must be paid to the nature, life-span and forms of each tick-borne disease (TBD).
Each infection is treated differently and it is no minor undertaking. It is best to seek guidance with skilled professionals who are truly lyme and TBD literate.
Methods may vary, still, they should be specific.
-
[ 07. September 2008, 12:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I wonder if the anaesthetic used during the operation contributed to the problems afterward. Anaesthetics can be devastating to otherwise healthy older people. Lyme just complicates things further.
-------------------- Just because it' s not nice doesn' t mean it' s not miraculous. --Terry Pratchett Posts: 121 | From Nazareth, PA | Registered: May 2008
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posted
To Keebler - thank you SO much for taking time to post all that info.
I first need to print out for easier reading.
And wouldn't you know it?? Printer out of ink.
But looks like a wealth of info.
And YES, it's overwhelming
But then, I've felt that way since this ordeal started.
So what's new??
Please know I do truly appreciate your support.
Helps to know people care.
Bonnie
[ 08. September 2008, 11:28 AM: Message edited by: brit5467 ]
Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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bettyg
Unregistered
posted
bonnie,
here are the other 4 replies from duplicate post you made ....
Tincup Frequent Contributor Member # 5829
posted 06-09-2008 04:26 AM -------------------------------------------------------------------------------- So sorry to hear about your mother's condition.
And the pain and frustration it is causing you.. and the disruption in your relationship with her.
To be honest...
There aren't many parents who will listen to their children when it comes to their health care.. even when the child is in the health care field. Sad but true.
It is also a rare day family members will listen to a Lyme lecture from another family member.. even if all the signs and symptoms are easily seen by the family member with Lyme... and especially when the ducks in the white coats feed the family member their official explanations why it is something else.
Having had this happen myself... and having seen it happen so many times before to others....
May I suggest? You may not jump on this.. or like this thought... but I am sharing it with all the respect and kindness I can.
She is 82. The hard cold fact is you won't have her around for many more years most likely, I'm sad to say.
Rather than push her away from you with your Lyme talk that she doesn't want to hear... and knowing she has already lived a LONG time with Lyme... and knowing she feels she is sicker while on the doxy....
And because you said she is strong willed...
AND because she is going to do what she wants anyway....
Let her live her days in peace, holding you close in her heart.... rather than seeing you as someone who wants her to do something she doesn't want to do... and having those negative thoughts as the last memories you both have of each other.
10 to 1- at this point the doxy won't totally "cure" her. It might not even put a dent in it if she has been sick a really long time.
The hardest part in this plan will be for you to watch this happening to her and trying to keep your mouth shut about it when you are together. But it can be done.
My thoughts are... the best you can hope for is to make her happy and somewhat comfortable.
It would be VERY difficult to try to treat someone of that age with so many other existing problems... and treatment would have to be so slow if you did.
I don't know if in months she would even see any positive changes.. and may end up worse on a daily basis for a long time. If she was willing to endure that.. and she isn't according to your notes... it would be a different ball game.
Never forget that you've given her the information she needed, tried to help her to the best of your ability... and whatever happens from now on will be her choice or decision.
My sincere and kindest wishes are being sent to you and your mom... and I will pray that you can come up with a solution that you can both live with... and that you both will have peace in your hearts, forever.
Good luck.
PS... I am not a doctor and this is not medical advise.
-------------------- I shall pass this way but once. Any good that I can do, or any kindness that I can show, let me do it now... for I shall not pass this way again.
-------------------------------------------------------------------------------- Posts: 6959 | From: The Moon | Registered: Jun 2004 | IP: Logged
Vermont_Lymie Frequent Contributor Member # 9780
posted 06-09-2008 08:54 AM -------------------------------------------------------------------------------- Bonnie,
I had terrible pain in one shoulder for years -- years! It completely went away after long-term abx. And neck pain.
As for doxy; I am sure you told her what you read here. Doxy gave me no nausea if I took it after a large meal. It is awful on a empty or near-empty stomach.
I hope you can have some success with her. Unfortunately, it can be hard to convince someone if they do not want to listen. Mothers too! Do not be hard on yourself, at least you are trying.
In my experience it is true what Tincup says above -- parents do not often listen to children about medical advice.
Maybe you could just get her to see an llmd; and go with her for positive reinforcement. Not sure if she has seen an llmd, can you get her to go with you for an appt? -------------------------------------------------------------------------------- Posts: 1874 | From: home | Registered: Aug 2006 | IP: Logged
poppy Frequent Contributor Member # 5355
posted 06-09-2008 04:55 PM -------------------------------------------------------------------------------- My experience is that no one, not family or anyone else, will listen to a lyme educational talk unless they are ready to listen and looking for answers already. Otherwise, you might as well talk to a wall. -------------------------------------------------------------------------------- Posts: 37 | From: USA | Registered: Mar 2004 | IP: Logged
brit5467 Flash Member Member # 16680
posted 07-09-2008 06:49 AM -------------------------------------------------------------------------------- Everyone !! Thanks SO MUCH for the support!!
Just took a chance and logged in since I must not have set my email reminder to let me know I'd gotten responses.
Didn't know I had any !!!
Am running out the door just now so I will read at length later.
And all this time I was thinking no one cared.
Shame on me !!!
Again, thanks and I look forward to hearing all you have to say!! -------------------------------------------------------------------------------- Posts: 22 | From: Buckroe Beach, VA | Registered: Aug 2008 | IP: Logged
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quote:Originally posted by bettyg: the part that bothers me she is going next month to ll INFECTIOUS DR. who does not believe in chronic lyme and who treats for 3 weeks and under!
Clarification - it was Family Practice Dr. (FP Dr) who did this treatment.
FORTUNATELY he WAS open to listening to my suggestions for ABX treatment.
But UNFORTUNATELY, it was HE who was not comfortable following the correct protocol.
And didn't want to prescribe ABX any stronger than 200mg/day or for any longer than 3 weeks.
But it was also he who DID admit to not being qualified and referred her to the LL Infectious Disease Dr. (LL ID Dr.) who was fully booked until 10/7.
So now she'll be off ABX for a whole month waiting for that appt.
In meantime, we are depending on FP Dr. for insufficient treatment.
She's going to him today again, to ask for iron summerate supplement for fatigue for self-diagnosed anemia (which she may very well have).
MY FEAR IS - with the little 'dab' of ABX for two weeks from June 20 thru July 3...
...and then ABX again (at my insistence) but only for three weeks from August 7 thru Sept 7...
I fear this intermittent treatment may only aggravating the lyme. Is my fear warranted?
Open to ANYONE's feelings on this.
PS - Betty, thanks for help in combining posts, etc. Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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posted
TINCUP - reference to entire reply - First let me say...you did not offend me in any way whatsoever.
Your suggestions were stated in the kindest way you could find and I truly appreciate them.
Question about something you said (excerpts):
"and knowing she has already lived a LONG time with Lyme...and knowing she feels she is sicker while on the doxy.''
``10 to 1 - at this point the doxy won't totally "cure" her. It might not even put a dent in it if she has been sick a really long time."
I am confused. YOU didn't confuse me. Just confused about facts.
When you say, ``...lived a LONG time with Lyme'' & ``...sick for a really long time'' - does ``sick'' mean just having it in your system and not necessarily showing symptoms?
In other words, it's still been invading and taking over her body unbeknownst to her, PRIOR to any symptoms and therefore harder to treat?
I ask because with the number of times she been bitten throughout the years, we can't be certain she contracted it years ago (she can't remember if she had bulls-eye or even symptoms from some of those bites)...
...or just this past Fall when she DOES remember the bulls-eye and swollen glands and also had symptoms from what we `thought' were post-operative complications (that I now think WERE from lyme).
I ask this because if we were lucky and caught it in time then I don't want to give up (or for her to give up) just yet.
Because, as far as letting her live her life out and not subject her to nasty treatments, she'd still be suffering from all the symptoms anyway and instead, she...
...would have me running her to all sorts of doctors, wanting to have her rotator cuff operated on...
...wants an operation on an eye muscles that she heard about from her damn orthopeadic doctor
...would seek alternative surgery to correct the 'botched' neck surgery, and so on.
She'll just try to `fix' each symptom independently which I feel will be MUCH harder on her than lyme treatment.
Maybe I'm wrong, but I'd much rather focus on what I feel is the primary cause of all this (lyme) BEFORE she subjects herself to unnecessary surgeries and non-related treatments.
But I'm still open to hear any and ALL thoughts on this. No one can offend me at this point. Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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posted
Vermont_Lymie said, "Maybe you could just get her to see an llmd; and go with her for positive reinforcement. Not sure if she has seen an llmd, can you get her to go with you for an appt?"
We see one in one month. Am hoping he is truly LL.
His associate was recommended by woman being treated for lyme, but that LLMD is retiring. So not sure about one mom will see.
Hoping that hearing things from LLMD versus me will make a difference.
She likes me going in with her to see the doc so that's a plus.
Just hope she'll hang in there until then. Since she's off the Doxy (no longer sick)...
...her main frustration is the fatigue. So bad that she's wishing she'd go to sleep and not wake up.
I've shared others' experiences from forum about fatigue, which seem to make her feel less alone, at least.
Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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quote:Originally posted by nwisser: I wonder if the anaesthetic used during the operation contributed to the problems afterward. Anaesthetics can be devastating to otherwise healthy older people. Lyme just complicates things further.
What problems could the anesthesia caused, in your opinion? She HAS always had problems with it and yes, with her age, it probably compounded it.
Posts: 36 | From Buckroe Beach, VA | Registered: Aug 2008
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posted
Many here have had surgeries bring out latent lyme. You can read my story below.
Anesthesia is hard on the body and if you have lyme "hidden" there, it will surely come out!!
You need to let her know that each time she has surgery, she will risk having her Lyme symptoms get worse. Happens nearly all the time for most of us.
Get her checked for babesia since the fatigue is such an issue. She cannot beat the Lyme if untreated babesia is there.
Call the "LL" ID and ask if they treat coinfections. If they have no clue what you're asking, then find another doctor!! You will know then that he is not TRULY Lyme Literate.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there...
Glad I didn't discourage or offend. With parents... ya know... it is hard to deal with them sometimes.. and the heart wrenching part is sometimes they won't listen and the figts to try to get them to won't do either of you any good. BUT...
You have some good added information posted which will help me respond.
You said...
When you say, ``...lived a LONG time with Lyme'' & ``...sick for a really long time'' - does ``sick'' mean just having it in your system and not necessarily showing symptoms? In other words, it's still been invading and taking over her body unbeknownst to her, PRIOR to any symptoms and therefore harder to treat?"
Yes... if she has been bitten and had bulls-eye rashes she has been exposed to Lyme. It can lay quietly in your body for years and not cause any... or maybe just minor... symptoms in some people.
She may have been given antibiotics during her life time that may have knocked it back some too. She may also have not connected the dots with the other on/off problems she has had.. and many women are told they are "just getting older" or they have hormone problems, etc.
Often too.... the first bite and the second (from Lyme carrying ticks may have been smaller exposures.. or ones her immune system reacted to properly.
But as folks get older.. and/or have multiple exposures.. or like tutu said.. surgeries, childbirth or other stressors hit you....
The Lyme may then pop up out of no where and bang bang.. you are sick.
The subsequent bites may also been from ticks that carried coinfections. That can increase the problems of treating.
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You said.. which I'm sorry... has me confused...
"I ask because with the number of times she been bitten throughout the years, we can't be certain she contracted it years ago (she can't remember if she had bulls-eye or even symptoms from some of those bites)..."
I am sure I am missing something here. Your first line of your first post mentioned what I thought meant she DID have Lyme rashes? It's late.. so I am probably just not catching the whole story properly... sorry.
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You said...
"...or just this past Fall when she DOES remember the bulls-eye and swollen glands and also had symptoms from what we `thought' were post-operative complications (that I now think WERE from lyme)."
You need to watch too for bartonella. But another dose of Lyme can hit hard.. or the stress of the surgery (if combined with Lyme) might have made her worse.
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You said... "I ask this because if we were lucky and caught it in time then I don't want to give up (or for her to give up) just yet."
Oh yeah. NEVER EVER give up! You are absolutely right. I just hope you don't expect too much in the way of fast cures... most everyone here would LOVE that and many have expected it.. but it rarely happens.
Heck, I'd love that too... but that wasn't in the cards I was dealt.
But yes.. please carry on and do your best.. as I think you will from the effort I see here. Good for you. Your mom should be really proud of you. We all should have children so kind and caring.
`````````````````````````` You said... "Because, as far as letting her live her life out and not subject her to nasty treatments, she'd still be suffering from all the symptoms anyway and instead, she..."
You are right. 100 percent. I just don't want YOU to be crushed if she refuses to let you help her. That is something I've seen happen many times before. It can break your heart.
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You said... "She'll just try to `fix' each symptom independently which I feel will be MUCH harder on her than lyme treatment. Maybe I'm wrong, but I'd much rather focus on what I feel is the primary cause of all this (lyme) BEFORE she subjects herself to unnecessary surgeries and non-related treatments."
Unfortunately, many people go their entire lives being treated piece by piece for what we now know is Lyme. So it has been done.. but I agree.. get to the source IF you can and if you have a willing patient.
So carry on and know that I think you are very special... even if she may not for a moment or two while arguing with you. I had parents too... and grandparents. They CAN be stubborn.
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