Noticing that I'm not getting a lot of emotional support as I tell friends and family that it looks like I have chronic Lyme.
I guess I can't expect them to understand but still it's hard.
I sent a family member the online video of 'Under our Skin'.
Usually I talk w/ this person a least 3 or more times a week. Haven't heard from them since giving the link a few weeks ago.
I might be paranoid but I sense friends backing off as well.
I haven't even entered into any treatment yet and already I feel like I'm spiraling down into depression on top of the head problems I've already got.
Posts: 128 | From California | Registered: Apr 2012
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posted
Honestly there's no way for them understand unless they have it themselves. I did like you did and sent the documentary to a close friend that has an open mind about things. So for him it wasn't a big wake up call. But for people that don't have an open mind on things and live in a bubble, this is not important to them, I'm sorry to say. I have plenty of friends that can be defined as this. Another friend I sent him a link warning about Lyme disease because he lives in an endemic area, he just ignored me and didn't even respond back.
You can almost relate what's going on to the movie the Matrix. As long as they are unaffected they will just keep living their day-to-day lives ignoring the bigger picture. When you try to wake a person up, most will ignore you and will not even believe you. Sad to say that's the world we live in today. Most people are concerned with sports, reality TV shows, TMZ, keeping up the Kardashian's etc... I know certain countries are different, I'm not sure what Austria is like, but over here in America it's bad!
There's a lot of problems in the world today, Lyme disease is definitely one of them!
And you are not paranoid about your friends backing off. This happens everyone with Lyme disease. I think it's because a lot of people with Lyme disease want to talk about the disease and their problems. It's hard not to when it's affecting your life in every which way imaginable.
Best way to handle this is to keep it positive mindset. Watch some of your favorite movies, uplifting songs, and read some good books. Having a journal or a close friend to purge on helps. Even just posting on this forum like you did now helps relieve the stress.
I will be praying for you!
Posts: 267 | From MI | Registered: Oct 2011
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posted
Its completely normal what u r going through. Family and friends will not easily get it. Realize that you are not alone and there are many others in ur shoes but theyve chosen to accept the diagnosis of ms,als, or fibromyalgia. Not all, but a good chunk of those people have lyme.
All you did was identify it correctly.
Posts: 184 | From taking pills | Registered: Oct 2011
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posted
There are a lot of Lyme discussion groups on facebook that you could consider joining for some socializing and understanding -
Posts: 13116 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes-you must stay in touch with us and the other lyme sites
some of them look really good-im too old and foggy to figure them out so i rely on lymenet
i lost family-friends-and new ones are hard to come by
i dont know what would have happened to me if i hadnt found lymenet...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Lymetoo has a point. When I told my sister I have Lyme, that is exactly what she thought--she could get it from me like a common cold virus.
She wasn't trying to be mean; she had never heard of anyone where we live getting Lyme and didn't/doesn't have a clue.
Thus why I spend too much time here with kindred spirits. Posts: 331 | From West Coast | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It is sort of like getting several divorces all at once - and over time - all the relationships lost over lyme.
True friends, though, are gold and will last. But, even they may need to take a break (or we from them).
This is a tremendous amount to consider. Just tremendous. -
[ 05-18-2012, 02:57 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
- Fred,
I see that the ILADS Austria conference is today and tomorrow. I know you and your new LLMD are planning to both attend -- and should be there right now.
I hope that is very helpful for you on many levels. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
when I first came down sick there was a Saturday night lyme chat that helped keep me sane.
Friend just didn't get it so it was nice to chat with those on line who did.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I just discovered this forum today and I'm already in tears of gratitude. Fred0, I have that feeling so often- that right there tells you that you're not alone. This has been frightening and isolating and misunderstood not only by friends and family but by so many physicians. After my 'brain fog' cleared a bit, I even went back to school and took bio classes to see the little suckers with my own eyes. I think because unless you have tics at the time- people can't visually see that you're sick- and for a million reasons, they disconnect. Posts: 6 | From PA | Registered: May 2012
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I think it's also a bit my fault. I find myself withdrawing from people as well.
All this new info on the disease has shell shocked me the last month.
My doctor's also on vacation till the end of May.
In the meantime I'm sitting here with all these test results, including the mysterious Elispot LTT, CD 57 and just trying not to freak out.
I'm curious as to what his conclusion will be and the treatment he'll choose.
How bad will I get? Will it knock me out of work, etc.?
Also, though I'm not feeling well, people in general don't even notice I'm sick.
I think that's confusing for them as well which I can understand.
I know I'm not well but it doesn't show from the outside apparently, besides the fact that I tend to withdraw socially at times.
It appears that many, are going through much, much more here than me.
I was even able to run 4 k's yesterday. I see people who can't leave their bed, house,etc..
@Kleeber-I totally understand. Don't want to overburden you.
Basically, the Friday ILADS session was great besides the stressful 8 hours train ride and 4 taxi cabs to get there.
For a newbie some of the medical voc. was hard to understand but in general very informative.
I was left a little confused about the differnt protocols of treatment.
Most mentioned Abx in combi. with herbal and co. treatments.
At least one Dr. seemed to have given up on Abx treatment because of the lack of results and because research seemed to show that Abx didn't kill Borrelia in it's Cyst and Biofilm forms.??
I got a few people's contacts. There were people from all over Europe.
Our gov. television showed up for filming and many went after Friday's session to eat with Klagenfurt's Major and Governor from what I heard.
I wish I could've stayed for Saturday.
I was also racing around between sessions trying to get someone to explain this Elispot LTT, CD57 test I had gotten back, which was not cheap.
Some (seemed) said the test showed my main problem was mycroplasma pnumonia, not borrelia.
Others said that though my CD57+ was not that low (81 from a normal range of 100-360) that Borrelia was still in play.
Anyways, I understand that it was a bit confusing.
Time was tight between sessions and of course a diagnosis takes in all factors.
I was just wanting a little clarity with the test. I hope my LD will clarify some of this when he gets back.
Sorry for being so long winded. Just wanted to share the trip.
Posts: 128 | From California | Registered: Apr 2012
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
fredo...this is also a great place to come to.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks for posting the summary.
Looking forward to reading it when able.
Thinking of you this am.
It took me along time to realize that people were making my health worse.
Dang it.
Communicating when able via the web is the best.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
fred I just want to share a story about a conversation I had yesterday with a friend from church. I am usually involved in a lot of committees there, but have withdrawn lately to save energy for what I have to do.
She said that they often discuss me at the meetings, and discussed that they could help me by delivering meals (YES), but they didn't because of my youngest daughters food allgies (I still have to feed other family members). Then she said that "because one of the members saw me at the ice cream shop (with my kids) they assumed I was getting better and didn't need any help". She also said that whoever saw me said "I looked fine".
I don't blame them but it was a good example of how people just don't get it (and these people are helpful and receptive) no matter how you explain it to them.
I think this process is about accepting this from others. I also think that WHEN I am recovered I will take a different attitude towards my friends who become ill. I will not ask, I will just help. If they don't need it, then what is the harm?
Everyone whom I have told now asks me this "How are you doing...you look good" As if they are answering the question themselves and that should suffice.
I try to take care of myself so I don't worry or embarrass my kids and I HAVE to run around with them.
I have given most everything else up.
I do agree that it is like going through multiple divorces at once. That is a great anaolgy.
Fred0 I also want to thank you for sharing some of the findings. My LLMD is there. Wish I could have gone. Sounds like it was a lot of travel for you though. Rest up.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Yes, I can relate to so much of what you say.
And, before I got sick, I really believed that most illnesses could be corrected with good nutrition, exercise, and rest.
Then, when I became sick, I found that none of this worked for me. It took me almost 10 years to realize that I had Lyme and not Chronic Fatigue Syndrome.
During this time, I have lost family and friends, and also became a target or scapegoat. It was a very painful time.
But remembering what I assumed about illness before Lyme, I can see how people really cannot understand until they experience this.
Slowly I am learning to forgive and forget, and just concentrating on getting well.
Good luck to you.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
I've lost a lot of friends too, it goes silent on the other end, and have had to deal with an awkward distancing from certain family members. In some cases it's good, these were toxic friendships that were not helpful in terms of healing but in other cases it really *%$#ing hurts.
And I'm scared to make new friends now. The other day I was walking my dog and I stopped to talk to a really nice woman my age. She invited me in to have a glass of wine and I couldn't because my diet is so restrictive. It sucks when even having a drink or "getting coffee" with someone is out of the question and there is that awkwardness. Yeah, I'm sure I could have had a glass of water with her but with that comes the eventual questions and the label that ends up stamped on my forehead and then the slow backing away.
It's definitely a time where I've found out who my true friends are and how rare true friendship is. And I guess the rest is part of healing.
-------------------- Just a catepillar, full of imaginal buds. Posts: 143 | From Philadelphia, PA | Registered: Mar 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Good point soccermamama//
Fred It can be lonely without a doubt
Sometimes you just can't believe it's real. Not that you got sick, but that so much goes with this illness/
I'm sorry that so many have turned so soon .... I guess it goes in stages as you've gone in stages to find out what was happening to you..
Sounds like you caught it a bit early,,which will help a lot..
Remember no steroids /ever//unless life or death.
It's total gas on the flame.. Wishing you a speedy recovery
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
fred0, I think all of us on here feel isolated and left in the dust. My husband is great, but has to worked and we live 10 miles out in the country. It is very lonely. I try to cope by cherishing the friends I do have left. Try to call relatives and friends on a rotation basis just for socialization. That works fairly well because I am not contacting the same person all the time. I find keeping myself busy with a no stress volunteer job 2 mornings a week helps (I can"t hold down a job, illness too unpredictable). I have retrained myself to have a few favorite TV shows I watch, I am always searching the web for the newest articles about Lyme, and I do what my Dr says is good for me Walk, walk, walk, and sleep, sleep, sleep. That seems to help alot. PM me if you just need to vent or talk to someone. I love getting messages. We can compare symptoms. In the meantime good luck and hope you are on the way to health soon.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
I feel the same Fred. It's a very lonely place to be. I forced myself to go to a gathering last night with my husband just to try to be "normal". Of course, it would have been easier to stay home because of fatigue, aches, anxiety, the fear that "lyme" would come up, the fact that I'm different than I used to be...but I went.
I made it through the evening without the topic of lyme coming up until the moment we were about to leave. Someone was asking me about my teaching job and summer vacation. I tried to avoid the subject but had to end up saying I wasn't working, that I, my son and sister had been diagnosed with lyme disease.
Two ladies were calm and caring and hugged me when I left, but one was obviously freaking out. She didn't want to get close to me. It was obvious she thought I was contagious... Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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quote:Originally posted by Muscle Car55: Honestly there's no way for them understand unless they have it themselves. I did like you did and sent the documentary to a close friend that has an open mind about things. So for him it wasn't a big wake up call. But for people that don't have an open mind on things and live in a bubble, this is not important to them, I'm sorry to say. I have plenty of friends that can be defined as this. Another friend I sent him a link warning about Lyme disease because he lives in an endemic area, he just ignored me and didn't even respond back.
You can almost relate what's going on to the movie the Matrix. As long as they are unaffected they will just keep living their day-to-day lives ignoring the bigger picture. When you try to wake a person up, most will ignore you and will not even believe you. Sad to say that's the world we live in today. Most people are concerned with sports, reality TV shows, TMZ, keeping up the Kardashian's etc... I know certain countries are different, I'm not sure what Austria is like, but over here in America it's bad!
There's a lot of problems in the world today, Lyme disease is definitely one of them!
And you are not paranoid about your friends backing off. This happens everyone with Lyme disease. I think it's because a lot of people with Lyme disease want to talk about the disease and their problems. It's hard not to when it's affecting your life in every which way imaginable.
Best way to handle this is to keep it positive mindset. Watch some of your favorite movies, uplifting songs, and read some good books. Having a journal or a close friend to purge on helps. Even just posting on this forum like you did now helps relieve the stress.
I will be praying for you!
-------------------- tasha Posts: 2 | From Wausau WI | Registered: May 2012
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posted
Hi,I was just "diagnosed" with Lymes yesterday. I woke up Friday shaking with chills, fever over 102, pain etc, Thru the weekend it got worse, fever of 104,absolutely miserable,it was very scary when I got up to go to the bathroom, I literally had no balance or bladder control! Of course there were rashes on differrent parts of my body. Went to the ED where their 1st suspicion was Lymes, was given fluids and 21 days of doxycycline, and wait for the bloodwork, Makes me wonder, the end of Feb I had almost the same thing, no rash that I remember or loss of bladder function, was treated for dehydration and sent home.We go camping all the time in central WI, over the years 3 of our Rotts have been diagnosed,wonder if I have actually had this for awhile? This comes right on the heels of another VERY ugly problem I've been battling for 16 months, MRSA, I've been hospitilized twice and have scars on my face from it. I understand how people can be, trust me, and am sorry to hear these stories.Luckily for me my husband is very supportive and so are several very good friends, and I know THEY will be thru this, as well. But I can already see "it" in my co-workers eyes, now she's got something else and will miss more work! I can't really blame them either, I've missed a lot and am very afraid of missing more . What I won't be able to handle is being treated like it's no big deal and the "looks" Well, thanks for listening , am so glad I found everyone here!! Will keep in touch
-------------------- tasha Posts: 2 | From Wausau WI | Registered: May 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
So much to go through................ Was it a LLMD that you went to???/ The Western Blot... Certainly going through fight with MRSA could have brought up what may have been there already,,or just hit you hard ,fast cause of it....
You might want to set appt. ASAP with LLMD/would be great if the same doc who's helping you fight the other infection could treat this...If it's a Infectious Disease Doctor make sure what his belief is in treating LD..
Makes a huge difference.
Maybe you should also post in medical with a bit more info in tag line..
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tasha:
Welcome.
I can't read your post due to the tight text. Paragraphs of no more than 3-4 lines work best for many here with eye and neuro issues.
However, I did see something about 21 days of doxycycline. That, especially, as a solo Rx, if often not enough. You need a drug that will also address the cyst form of lyme. Doxy does not.
Doxy also does not address Babesia, a common coinfection that often travels with lyme.
If you have a new case with rashes, the tests will likely not work. Too soon to test.
Keep photos of any and all rashes. Compare your rashes with links at the thread below. Different infections can present with different kinds of rashes, or none at all.
Be sure to look over these two threads about LYME diagnosis and treatment.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
It's tough but it often takes troubled times to see who your real friends are. I know where you're coming from and it's a rough path. I lost nearly all my friends from my being sick and now I'm losing my boyfriend.
If people can actually emphasize, I've found the problem becomes the issue with lyme itself. I've yet to meet anyone in person who really understands the problem. I didn't think I had lyme so bad but I've been sitting idle for a long time. I've gone to support groups FOR lyme where even there I felt like an outcast. I've developed major cognition problems and can't speak without trouble ever. I forget everything and I seem to get on everyone's nerves, even when trying to be calm, easy going, patient, etc. I just don't ever feel like it's a two way street. Other people I've met with lyme seem "recovered" or too far into things as far as the holistic approach goes. I can't wrap my head around it all, I feel like a zombie.
It's tough but you need to try and surround yourself with people who are understanding and patient. I'm sorry for going off into a rant there, but I totally understand what you, OP, mean. I asked my boyfriend to read online about some problems I'm having because of lyme and I don't think he's done it despite my almost begging him. It's hurtful when the people closest to you lose their patience with you and sometimes even their general regard.
I'm in the same position as you, OP; I wish I had more encouraging words for you.
Posts: 7 | From CT | Registered: May 2012
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quote:Originally posted by Lymetoo: Sometimes they think it's contagious... so you may want to clear that up.
HANG WITH US!!
Yes, it's sad how people think this. It's because of that I stopped being so forward and admitting it to new people.
Posts: 7 | From CT | Registered: May 2012
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