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» LymeNet Flash » Questions and Discussion » General Support » Letting it go when you believe someone you know has Lyme..

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Author Topic: Letting it go when you believe someone you know has Lyme..
Ocean
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How do you do it? When you are sure they can be helped? I know someone, dx with 'Atypical Parkinson's'. I saw the lab work, Labcorp...bands 39 and 41 present. Positive for Bartonella. She tried an LLMD, got really sick on 4000 mg of Amoxi per day...ended up in Cleveland Clinic. She believed that she did have Lyme...Cleveland Clinic ID ducks looked at the labwork and said there is no present infectious disease including Lyme.

A new Neuro from Cleveland Clinic says now that it's 'regular Parkinson's'.

I'm not a doctor, but according to Dr. C and many LLMD's...band 39 is a very very specific band. I have no idea what would have shown up on an Igenex Western Blot...this was the crappy Lab Corp!

I know there is nothing now I can say or do, but I hurt for her, because I am afraid without treatment, she will just get worse and worse and possibly die.

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1619 | From Ohio | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
seekhelp
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If one gets ill enough, they should see the light themselves. You can't walk people to the door everytime. You could provide some articles for them to read.

UOS is powerful, but I think lacka merit about the clinical diagnosis aspect of Lyme. It wouldn't have convincd me of having Lyme. It does have interesting points though and could affect people. People here are impacted greatly by UOS because they so strongly believe in the topic before watching it.

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mazou
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I "knew" for over a year before it sunk in enough for me to "know."

If you have done what you can to help her catch on, than you have done what you can. Wishing her the best of luck.

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Lymetoo
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Send her a copy of DR C's explanation with that part highlighted about band 39.

I feel sorry for her and for you!! That's hard to deal with.

My father had Parkinson's and Lyme. We just didn't know he had Lyme until I was dxd many years later. He passed away before I was dxd.

--------------------
--Lymetutu--
Opinions, not medical advice!

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bettyg
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OCEAN, just know in your heart you tried everything you could; you reached out.

you can lead a horse to water, but you can't make it drink; same here. DENIAL.

god bless you for all you've done to help them. [group hug] [kiss]

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kam
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A fellow worker also was dx with Parkinson's. I sent him info on lyme and GiGi's number.

He actually got mad at me at one point. He was higher functioning than I am. Able to ride his bike,etc.

But, he did die. He also stopped all communication with me before his death.

Others at work who came down sick the same time I did with the same bizarre symptoms will not see a LLMD>

They too are higher functioning than I am and don't want to hear about lyme and company.

I have pretty much not said anything anymore unless someone comes to me and asks for info.

Then, I find that it is really just someone wanting to shoot the breeze.

I just don't have what it takes to shoot the breeze.

So, trying to keep things short and then change the subject or cruise on out of there in my power chair.

I went a long time trying to "educate" others on it.

I have a friend that has been supportive since I came down sick in 2001.

I feel she needs to be seen by a LLMD, but she is taking provigil and getting cortizone shots instead.

She too is higher functioning than I am. She is still able to teach.

I guess it is the old leading the horse to the water but they need to get a drink themselves.

HA I just read the above post by Betty.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
kam
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PS My friend dx with Parkinson's was a principle and an educator whose neighbor's were neuro's, etc.

His attitude was why should he believe me when he had neuro's telling him otherwise.

Good point if you don't do your homework on lyme and company.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
Ocean
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Thank you ALL for your comments!!

She researched Lyme extensively for many months. She borrowed my UOS and watched it half a dozen times. She was SURE she had Lyme esp after seeing an LLMD. She had quit all PD meds cold turkey and had gotten worse from that (she felt that they were helping her with the sx, but said they made her feel really brain foggy). Then adding the abx just put her over the top.

I told her about Lyme.net, but I don't know if she ever visited it or not.

I do believe she has PD, caused from Lyme and co. You are right though in that she will have to choose to believe either the LLMD or the CC. It's a shame that everyone reveres the CC as this place where you can find out what is wrong. I know 3 people with Lyme who went to CC, one was my brother and when MS was ruled out, the neuro shrugged and said he probably had a virus that would go away in a few weeks.

When it didn't, he got tested for Lyme and when requesting his medical records, the Neuro told his wife that he was 'just one of those medical mysteries', which infuriated her!

I have done as much as I can with her, and she is so ill, that possibly too fragile for abx even, had a feeding tube in hospital, extreme difficulty walking, ect.

It makes me sad.

Thank you all, and for your stories of knowing other's with PD, so sad Kam about your friend, but it seems like you did everything you possibly could to help! It's a shame that Doctors are revered as all knowing in our society...they are human and are only as smart as the books they read from...I know several doctors whom I am thinking the MCAT and med school can't be THAT hard if THEY passed!!

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Topaz
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I have an online friend who I have known for several years.

Some time back she was diagnosed with "atypical MS". The doctors are puzzled. When she describes some of her symptoms, they SCREAM lyme to me.

I've told her more than once that she should be tested for lyme. Her responses are always vague, such as, "I think I was tested once and I was negative...., or "I'll look into it...", blah blah blah.

One of her sons has also had problems since birth. The doctors can't figure out what is wrong with him. Again, sure sounds like a congenital lyme kid to me from what I've read on here.

I've given her info on this site, explained the link between MS and lyme, encouraged her to see a llmd...

Anyway, I think she's becoming annoyed with me mentioning the lyme thing so I've stopped.

It's very frustrating and I can't understand why someone would not want to explore every possibility. I know I would.

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22dreams
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There's only so much you can do.

"put it out there". The person has the Idea in their arsenal of possibilities and it's up to them to choose to pursue it.

I've wasted alot of time.

It's sorta like you have to Read a person.

I have a co-worker, who at 37-38(?)yo was diagnosed with "shingles without the rash" earlier this year.

She described her Symptoms and another co-worker of mine snapped her head to look at me and said "oh no"(thinking of lyme).

When I suggested that the symptoms are similar to lyme, she pretty much snapped at me "well, I don't wanna be on all kindsa meds...".

The person with "shingles" isn't open to it. She's going for PT, on neuro-inhibitors. Has bronchitis every year....she's very energetic person though.

It's called we hafta "let it go".

I have a sister who is in denial about lyme too (chronic sinitus, UTIs, conjunctivis, dx'd this year with arthritis, now long QT interval).

"do you think I have lyme?" she said.
"Yes, I absolutely do..." and then went on to state Why.

There are ppl of certain mindsets who will only listen to "Authority" or are more prone to living in Denial about things in general.

It's their make-up, their choice, their path and their lives.and maybe part of their lesson is to learn from close-mindedness.

In 5-15yrs my coworker may be dx'd with MS or something. but her mind is rigid. She's a smart person but lacks a certain kind of intelligence.

I find that with academics in general, too, living where I live. They are tough nuts to crack, but being sick, it's not our job to try to crack them. Provide information and move on. and maybe they'll remember someday what you shared.

I've wasted a lot of vital energy on ppl who aren't receptive. We have to get well ourselves.

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PB4
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It is so frustrating when you want to help. I

know two or three people that have LYME written

all over them. You can only do so much if they

don't want to hear it.

I've decided to only mention it and if they are

not receptive then I have to continue to focus

energy on my own healing.
PB

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massman
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22 said "There are ppl of certain mindsets who will only listen to "Authority" or are more prone to living in Denial about things in general.

It's their make-up, their choice, their path and their lives.and maybe part of their lesson is to learn from close-mindedness."

Excellent points !

Wasn't it Simon + Garfunkel that sang "a man hears what he wants to hear and disregards the rest" ?

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Ocean
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GOOD NEWS!!! They are still pursuing Lyme!!

I spoke with her this weekend...they aren't giving up, but they are seeing Mayo clinic soon...hope they don't give up after going there...maybe she has something else too that they will find though...it's great they are not stopping with the regular PD dx...they are intelligent, wonderful people...

Thank you all!

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Nicole_Denise
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I just saw this...

My grandfather almost certainly has Lyme. He got a bulls-eye rash 15 years ago, and since then has become very ill (he used to be extrememly healthy).

He has terrible neuropaty, brain fog, joint pains (Dr says it is rheumatoid arthritis, but it doesn't respond to RA drugs), night sweats, and heart problems.

He has become so sick that if he doesn't do something soon, he's going to die. But he refuses to listen to anyone when they suggest he look into Lyme disease (partially because he believes his Dr, partially because he doesn't want to believe that he's suffered for 20 years when he didn't have to).

We have got the Igenex kit for him, offered to pay for it, but he still won't do anything.

It's his decision, and I have to let him make it...but it's killing me! He's my grandfather, so I can't just quit caring...

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bettyg
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is there any type of lyme health clinic in your area besides MAYO? what a waste of money and time plus being depressed.
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lymewreck36
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This year, I lost my best friend of 33 years becuase she was so sick and I begged her to get tested for lyme.

Her situation....lives in New York, oodles of pets, camping with family, lots of leaves in the yard I think. Been her situation for over a decade.

Now she has "fibromyalgia" the doctors said, becuase it looks like MS but doesn't test for it, looks like R. arthritis but doesn't test for it, the onset was depression,

So...in the end, they call it FMS.

She exploded in anger when I suggested she get tested for lyme. Her doctor said she didn't have that. And I pursued the subject because of friend of 33 years is worth that.

Now we don't speak.

What about my make up made me pursue the answers on my own, without anyone whispering in my ear, brought me to the computer and made me analyze my situation, cause and effect, and discover the truth for myself.

My friend did much better in school than I did. Extremely intelligent, never a mainstream person.

My shock remains to this day.

I can happen to any friendship. People don't want to hear it and will go to the ends of the earth to shut you up about it.

Two years ago, a friend of our from when we lived in Connecticut came to visit us in Switzerland. He told my husband when I wasn't around that he thinks he has lyme but not to tell me. He didn't want to hear anything from me.

This is the guy that was with us when I went through my ordeal in Connecticut with doctors and trying to find treatment. Was with our family when I was on I.V. When I had the attorney generals of new york and connecticut assist me in getting the insurance company to pay for my I.V.

OUr friend hikes in Connecticut for his hobby. I warned him once. I guess he didn't like that.

WE have not followed up with his "lyme" at all, asked about it or anything. It's a non-subject.

They are coming to visit us for Thanksgiving, the entire family. We miss them. I hope he is o.k.

But I got the message loud and clear....he doesn't need my help...thank you.

People mostly think doctor's are god...especially if they are Yale doctors. A lay person like me could only be a raving mad person.

That's my story to add to the rest. These things are very common, and they are very sad.

Mary

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22dreams
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For the negative stories there are positive ones (sort of).

An ex-friend of mine (who is an ex-friend for very good reasons), emailed me yesterday.

He noticed a rash on his back recently and pulled out a tick. Stated he has the whole 9 yards of symptoms (wasn't specific about it).

But, having seen what I (and my sister) have gone through:

He emeailed and inquired what questions he should ask, what he should say, and what treatment he should insist on, I guess.

It was a difficult interaction for me with him (because he has been/was/is such a jerk, and this is being generous)--

but: I persevered and gave him the info none-the-less.

On what dosage to request, the 2 standards of care etc.
Links to documentation to print out.
To have the PCP call a doctor in CT to discuss if need be (depending on how open he is to actually caring for the health of this patient).

It's up to him to use them or not...

He may more than likely cave and take whatever the doctor gives him.

But: I put it out there and let it go.

I'm sure it's much more difficult to let it go with someone who is a real Friend though.

I feel like I may come across as raving mad too.
Well, I give A LOT of information to people to read over if they inquire. Nutshell the basics too.

But when people are at the point of their first doctor's visit and don't truly grasp everything, this can pose a danger to their future health.

Esp. with the whole doctors are God thing.

One of my sister's has had a myriad of health issues and is in denial despite both her sisters having lyme. There is really nothing that can be done. We can only do so much.

I totally understand how difficult it is to temper our response to these situations.

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lou
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It isn't just lyme that people won't do anything about. Other health issues that have better answers will also be ignored by many people. They just won't listen or think for themselves. Maybe this even describes most people. Is it because they are brainwashed or because they are lazy, or what? There is a certain attitude in society that anyone who worries about their own health is a hypochondriac, so people may be rejecting that label by ignoring symptoms. This seems like a good topic for a psychiatrist/psychologist to research: attitudes and behavior in people with disease symptoms.
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22dreams
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My ex-friend was concerned enough to email me about it. He had been vague on his symptoms, mentioned a rash though.

But had pulled a tick out of his back.

Not to get anyone riled up, however:

He went to the Doctor and wasn't even given
that single-dose Doxycycline as prophylactic treatment.

so: sub the sub-par IDSA guidelines.

"But" the doctor reportedly did a great job examining him.

He looked him over head to toe, literally. Went through his hair all the way to between his toes.

He said that he did not see any "evidence of lyme".

the doctor drew blood, that he said he did not think would show any evidence of lyme but it would "give him a baseline".

and he wants to watch him, so, if he develops any symptoms, he's to come back.

"wait & see"

wonderful.....I can't even bear to hear any more of these stories...

This year my PCP was bitten at a backyard BBQ in the city. The Md was taking preventative course of doxy (Higher dose) but had an adverse reaction and wasn't diligent (b/c of stomach/yeast) with her dosing.

6 weeks or so post-bite, my PCP developed neuro symptoms (facial numbness, that is all I know thus far). NEVER had a rash of any kind.

When is the madness gonna stop, y'know?
"wait & see"....

anyway, thanks for listening. I'm off my soapbox now.

Posts: 571 | From Massachusetts | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
   

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