posted
The medical threads seem to be where the action is. That's why I'm posting here. I don't want a bunch of action. I want to comiserate with you.
If I were to post this in medical it could easily result in an attack on someone involving themself in the thread, thinking they are doing something positive; just wanting to be involved. That attack could be on something as seemingly unrelated to our plight as grammar or spelling.
I'm just looking to express myself, and to express frustration as well.
Do you feel overwhelmed by choices and advice? Of course you must feel that way if you have this disease or these diseases, depending on your diagnosis.
From well intentioned and truly helpful people here you first get the advice to "Get yourself a good LLMD".
"What the heck is an LLMD?" you asked at first.
I think if there were one wish I had for mankind it would be that they would never need an LLMD. I'd make that wish not only to spare them the illness, but also to spare them the madness that accompanies Lyme and the community of sufferers who are afflicted with it.
After you get the LLMD, the only person who can save you, you'll get advice saying "don't listen to such and such that your LLMD says."
Next comes the testing. It is such an odd experience for the new patient to have to deal with Igenix and other labs that aren't mainstream. I'm not saying mainstream has the answers we need, but it is tough to know just how much of the answer Igenix and other labs that might be considered unorthodox really have.
Then there is the diagnosis. In my case, its clinical. I had a positive FISH test. But what percentage of the general population is positive? "Thankfully" I had air-hunger to back up that diagnosis.
My Lyme test is negative by Igneix standards, characterized by a double starred band 41, but clinically, I have Lyme.
My Bart tests are weak and probably everyone's tests would show similar results but once again "Thank Goodness for Sore Soles!" (to back up the diagnosis).
Next comes supplement and nutritional advice out of some nightmare from well wishers; to take every herb and supplement and specialized food, and enema, and detox, and anti-parasitic in every specialized way and in every combination one could imagine.
I don't know how people have the time to become such experts. I've been in my technical field for many years but I have only a tiny fraction of knowledge related to my profession compared to the knowledge of some here on Lymenet with respect to the human body, its chemistry, electrochemistry, and its spirtitual energies.
Next comes the admonishment that we need very expensive machinery if we are ever to get well. First it is Rife and an endless discussion on what the right frequencies are, then Bionic 880 and associated trips to Germany. Then there are tensors, which seem to be divining rods for use on the body, and probably a ton of other related and unrelated machines and chemicals that make it all happen.
Guilt and attacks are all part of it. I haven't had my amalgams out but if I were to start a thread on the subject in medical folks would begin to post and start to brutally attack one another and to quote a staggering quantity of articles and statistics. Go ahead, have a look at the amalgam thread that is up there now.
If I do the wrong sort of exercise in the wrong way I will invariably be told "you fool, don't you see the error of your ways?"
The disease is like a religion. Each faction believes they have the truth. Each wants to win converts and will defend their position seemingly to the death.
Telling an advocate of a given therapy here on LN that you are skeptical is much like telling a person with a strong religious perspective that you are suspicious of their beliefs.
I haven't done Humaworm and my LLMD has never mentioned it and, of course, I'll never get well because of my lack. My amalgams will surely toxify me and once again my outlook is bleak. No Rife machine?, sorry bub, you can only blame yourself for being sick if you haven't tried Rife. How will I ever get well without biophotons or the right abx protocol or whatever?
I have very little medical training and can understand precious little of what goes on in normal medical circles. Here, there is a whole array of technologies and beliefs that are rejected or unknown to mainstream medicine and which have a whole language of their own. There is talk of Chakras and Meridians, which I think may come from Eastern Medicine but I don't really know. I only know that I am doomed because I don't know about them and don't have the time to immerse myself in that genre.
There are those who will pound their fists about how much they know and how stupid others are, but I think that a lot of those people are sick too. They may say they have just a little symptom or two and that they are cured but I think a lot of them are sick, just like you and me.
This is the wackiest, absolutely wackiest thing that could ever happen to a person; to be diagnosed with these diseases. This is the "Alice in Wonderland" of illnesses. The characters are just as surprising as in that fairy tale.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm sorry you're having such a difficult time.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I guess the problem is anthro, since we are unique individuals, that which works for one person, might not necessarily work for another.
I have been in the trenches with my daughter who has Lyme for eleven long years and protocols have come and protocols have gone.
I think it is, to some degree, that we all have that hope that this "next thing" could be the THING that puts a person more on the well side, verses unwell.
I have wanted so badly, would give my life for it, for my daughter to be completely well, and others here who struggle, would do just about anything to be well also...and that is why people offer up their best advice...it's because of that desire...and you can't blame that...you just can't.
And if people are passionate about things, well, that can actually be a good thing.
As far as the recommendation that a person see a LLMD, well that is absolutely the best advice EVER, since 99% percent of us had to go through the gambit of uneducated doctors that cost us untold heartache and untold truckloads of money.
I do understand your post...Lyme is an unforgiving illness...we are all just trying to make our situation a little more tolerable.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I certainly feel overwhelmed at times. Very sick at times too.
I think we each have to manage our own care based on the information we have. I don't see a LLMD but my primary doctor will prescribe antibiotics when I test positive. Which I did, through LabCorb, not Igenex.
I have not discussed nutritional supplements with my doctor but I did print out Dr. B's list and went through it very carefully and decided what I would take. Sorry, but no herbs from Tibet for this girl.
I did adjust my diet. No more soda, no more aspartame, no white flour or wheat flour for that matter, and no sugar. I do cheat on occasion and can feel like I've had a bottle of Tequila the next day. I detox with lemon water, seems pretty harmless and usually refreshes me.
I'm tired of being sick but at least I don't have cancer. Sometimes I think that would be "easier" but then I know better.
And, yes, lyme is a crazy a** disease. It is very unfortunate that there is a possible chance that it was introduced to our society by the government. Some days I even believe this in its entirety. Some days I don't even want to know, I just want to get better.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I have been feeling overwhelmed by choices.
Pick one.
Which one? I can see how someone can drop many thousands of dollars in the bucket of hope this cures me!
Thank God I have a clear head and can obsess (I am very good at that) on a solution to the Lyme challenge. If I had Lyme? I don't know if I could do all the research. The kind of pain and brain fog my son is in... I wouldn't have the energy. Besides that, I would need more sleep.
Right now, I do fine on 4 hours. He needs more, he's healing. And you have to think of it that way. You are healing, every day.
I have been up until 3AM many nights in a row... searching for the one thing that will get my son better... I have read tons of posts here on the forum, read books on google reader, taken books out of the library - I contacted a friend I know who has a rife to see what kind it is. I am ready to buy a plane ticket to anywhere so that he can feel better.
He's been sick since July 10th of this year- that's when the flu hit. Two weeks later he had achy knees and feet. He wouldn't get up because he hurt too much. He's only 11 and he walks like an old man! I cannot imagine having this for years! Those of you who have had Lyme for many, many years... God Bless You! AND--Take the stinking pain away!
If I "cure" my son with ANYTHING... I will tell EVERYONE. That's why people here (and all over the Internet) sing praises for the ONE thing that made them feel better. For people to accuse them of lying or faking a cure is ludicrous. The people who do that are just jealous that it is not working for them!
Everybody is different - momindeep, you mentioned that too and that is the bottom line. We are all different. We have different beliefs, different chemistry, different pain tolerance levels, and much more.
I am calmed a little by remembering one phrase I have heard in the Lyme community, "It's a marathon, not a sprint." I cannot get him better today, right now. No matter how much I want to!!!
I have to remember to slow down and enjoy the moments. Today we watched Bill Cosby and laughed. We love to watch comedies.
That's a great thread for General Support-- Favorite comedies. I'm gonna go start it right now.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Take everything with a grain of salt. Everything in moderation.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
I am so overwhelmed, I don't even want to live anymore
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While researching is vital to our understanding and overcoming lyme/TBD, the very most important skill is learning how to
self-soothe.
That involves honing the skills of cutting back, scheduling "study" time, and backing off when the emotions are just too raw or overcome from either the sheer humanity of this or the sheer volume of information we have to wade through.
At any time it feels too much for the brain, body or emotions - turn off the computer.
If you see LymeNet (or other social/learning websites) as a library, you'd not take down every book from the selves and then expect to absorb all detail instantly.
The web is one HUGE library. It's also one HUGE support group and the degree of sadness and horror from this would bury anyone. However, there are also places to find light, love and laughter.
So, you can choose what books/sites. Some folks who can read have 2-3 books at at time: one serious, maybe non-fiction; one fiction, probably lighter matter; and maybe one humorous.
That's about the most anyone can handle at a time. So, we can take a note from that balance.
Yes, there is immense multi-dimensional sadness that comes not so much just from having lyme but the lack of medical care, costs, loss, and societal and family attitudes. While acknowledging the stark realities, we can't let all that kidnap us.
"Yes . . . and . . . " I find myself often saying. "Yes, it's awful. True, I'm not sure how I'm going to regain my life . . . and . . . hey, the clouds are so beautiful today and I love the tune playing on Folk Alley right now."
I can walk away from the computer (but I do stay here so often when just too tired to even get up). When I feel that I have so much to learn in order to save my life, I have to realize that I'd not stay at a library all night, so why stay too long at computer when my body is clearly telling me it's overwhelmed. Working harder seldom works for me.
I try to work smarter, keeping it simple (which is never easy) - and with a lighter spirit.
Tuning "study" into exploration rather than despair works better for me with all this. Rather than the "oh, ****, gulp!" if I can turn that into "well, isn't THAT interesting?" - I don't drown as often.
I find a lighter spirit when listening to music while studying. Still, endurance is short lived for most of us so when we feel that drop . . .
Focus on something else entirely. Nature is great, music, active resting, a walk . . . and here I go with offering lots of choices when lyme sort of short circuits our brain in the face of choices.
Pick one thing - find one activity that nurtures - even if it is the activity of observing nature or listening to music. The antidote to being overwhelmed:
NURTURE yourself. We. Must. Nurture. Repeatedly. And, you know what, no one is really good at this. We have to learn it and we have to give ourselves permission. It's okay to breathe. Really. It's okay to step back.
Step into something that is enjoyable and nurtures physically, mentally & emotionally. Ideally, it's best to have a good LL doctor so that we can focus on healthful living. Ideally. -
[ 11-01-2010, 05:02 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
anthropisces - I love this post. You've expressed what many of us feel.
As for the condescending "attack" posters, I think the moderators do a good job of keeping the regular attackers off of Lymenet.
When someone slips into attacking and belittling, I try to remember how often we are attacked and belittled for believing that we have a serious illness and for trying to get appropriate treatment. Being attacked makes people snarky, then they snark at us. It's a shame, but it's reality. If you feel belittled on a thread, leave the thread. PM a poster who had something rational and kind to say.
I agree with many who've said that when someone finds something that WORKS, they want to yell it from the rafters. Hard to blame 'em. It may help someone else, maybe someone who has reached a desperate situation.
But it won't work for everyone, which is why Lymenet is such a great resource for Lyme education. My LLND is great, but she still says things that make no sense, in light of what many, many people here have experienced. Each person can only have so much information.
So take what you need, and leave the rest. You can always come back for it later.
As for those who have every answer, many of us have been sick for decades. We've read everything we could get our hands on as we've attempted to self-diagnose and self-treat. After Lyme diagnosis, we continue our patterns. And appropriately so. Research is WAY behind. To some degree, we have to help ourselves.
But you don't have to do EVERYTHING. Most people pick a treatment modality, and stick to it for a good amount of time. Many get well with their chosen modality. For those who don't, they try something else. Please give your brain a break. You don't have to devote your entire life to Lyme to achieve remission.
BTW, I'm stowed away on your yacht in another thread.
posted
i haven't been on lymenet for a while...it became too
overwhelming
for me and so I stepped away...I found myself getting more
confused @ one point with all the info. available and very
depressed because I didn't ( and still don't ) know exactly what I
should be doing to help myself get better...I follow my LLMD's
advice mainly along with throwing in a few "things" that people
here recommend...some have helped...but mostly I can't tell
what works...the symptoms vary so much from day to day and
even within the day , not to mention every few days or
weeks...and the ABX treatments vary too...so how does one
know what is interacting with what and what is ACTUALLY
helping ?!
I improved over the summer months but didn't even realize I
had until recently since I feel so bad again... the hindsight thing
..now I feel like I have to start all over again to figure out what I
need to be taking now...ie...was it the oil of oregano and
grapeseed extract that made me feel better before or was it the
ABX I was on or the combo of both...but if I am in a different
place now than I was then will the same combo work ?
I am on different supplements now...are they working ?
I honestly cannot tell you...all I know is that I don't know what I
would do without this site...
so many have helped me in the past and despite being so
sick themselves will take the time to reach out and help others
...I hope some day to be able to do the same...but @ the
moment I don't feel qualified to help...it is a frustrating disease
to be sure but without the support of this site I don't know how
I would have survived so far...so take away from these postings
what is good and positive and may be helpful to you and ignore
what is not...filter out what doesn't do you any good...we are all
experimenting with treating this disease since there is no
one cure that fits all...thx so very much to everyone here who
shares and therefore gives hope to others and maybe something
that will help another...now on a personal note...am thinking I
need a second opinion from an LLMD...would someone PM me
who the "top guns" are these days...thx...
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Karensky,
Your request for names of top LLMDs may get lost here. You would probably fare better hopping over to the "seeking a doctor" forum and starting a whole new thread - with a state or region indicated.
If you are looking to compare some of the top methods, this book is vital: -------------------------------
This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies
posted
Karensky, I am new to this site and have yet to be diagnosed by an LLMD. I was being treated for menieres disease since may and out of work from it. I foudn too many other symptoms that didnt fit and someone else in the menieres group was tested by ignex for lyme and is positive. She is starting IV therapy this week and had a port put in her chest yesterday. I too have found myself depressed and much more anxious now since I read things on this site. At times I wish I did not see what people wrote cause now I feel there is no hope so why bother to take the treatment. I am very confused. I just got married two weeks ago and want to start enjoying life but this constant brain shock and off balance feeling along with pain my knees and fingers is stopping me. Do you have any suggestions at all..Ann>NY
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I think we all feel overwhelmed most of the time. I don't know how we can not feel overwhelmed.
We spend 24/7 trying to get better, researching, reading, Emailing, going to the doctors, trying to work, etc, etc, etc!!!
We have to take one day at a time. If you're feeling overwhelmed take a break from life. find something fun to do, laugh, smile, go to the movies.
Just take one day at a time! Only do what you can do...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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