But personally, when I was a newbie (still am to some extent - only 8 months old), I was overwhelmed by all the information and didn't know where to start.

The overwhelming impression I went away with after my first visit to LymeNet was

#1) to find an LLMD

#2) that there will be insurance issues

#3) 50+ links to click on.

In retrospect, I made some bad choices because of this impression, which I don't think was deliberate by anyone from LymeNet.

What I would have liked to hear, in retrospect, is the following:

#1) Educate yourself.

#2) The main ticket to your cure is yourself; even more important than the doctor.

#3) Find an LLMD who is hollistic. (There aren't many of those.)

#4) In lieue of #3 just find any LLMD.

#5) Provide a few targeted links in support of #1, e.g. in decreasing importance,
- very simple summary of LD and coinfections,
- summary of importance of detoxification and chemical balance,
- Dr.B's guidelines,
- guidelines for appropriate eating,
- summary of how to and importance of minimizing stress,
- insurance primer,

#6) All other links.

Basically, I would have liked that the initial advice that I received from here was more structure and geared towards "ramping" you efficiently up the learning curve.

What do you think?

I am finding that while my LLMD has been an integral part of my healing - she/he does not have the time to educate me in all of the areas such as nutrition and alternative work.

I don't think that just antibiotics can get a person well. You have to be deliberate in the foods you choose, the lifestyle you lead, etc...

I see others stuggling to get better who have not addressed other issues and are just fixated on the abx treatments.

So I do agree with you there.

I do think that the resources here that are presented are invaluable and before I even found lymenet I was overwhelming myself with all the information I was scouting out myself...I just was happy with anything I could get my hands on...I do understand that feeling of overwhelm though.

Take care and I hope you fight the good fight and WIN with these tick borne pathogens!

------------------
"If I can stop one/Heart from breaking/I shall not live in vain/If I can ease one Life the Aching/Or cool one Pain/Or help one fainting Robin/Unto his Nest again/I Shall not live in Vain." Emily Dickinson

1) Get tested, and give consideration to the Igenex Western Blot.

2) Be prepared for most doctors to be ignorant, hostile, or both.

3) Ask around and find a recommended LLMD.

4) Recognize that Lyme literate doctors are typically caring for a very large number of patients, and work at keeping the specifics of your own case fresh in your LLMD's mind.

5) Don't assume that everything that goes wrong with your health is 'just Lyme'. Be alert to secondary or independently arising health problems.

6) Take advantage of drug company programs to provide medication at no cost. If a treatment looks desirable, don't give up on pursuing it automatically if it appears to be beyond your means financially.

7) Prepare for continuing struggles with insurers, other physicians and specialists. Getting a Lyme diagnosis is a terrifically important step but doesn't liberate you from the flawed response to this disease that most healthcare providers demonstrate.

8) Be an active partner in your own care. Research the treatments you're prescribed, and others that might be of benefit.

9) Work at unlearning the messages you've been given by doctors and others who didn't understand anything about Lyme disease. You are NOT a 'problem patient', and you DO have every right to ask for things you feel you need.

quote:

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Originally posted by cave76:
Michael,

Rule # 1 ---- never, never ask cave76 what she thinks.

---

Dear cave girl,

I'm so glad you reminded me about the following:

I'm thinking about starting this new thread about adding an option to select when posting messages on LymeNet.

You know, along the same lines as

o Disable Smilies in This Post
o Show Signature.

This third option, however, goes something like this, and this is where I need your opinion:

o Exclude the following members from seeing your post: ____(Default: cave76)____

What do you think?

side effects
drug interactions
food allergies

I'm not discounting the information available on LymeNet. I'm just saying that the way it is presented to newbies is overwhelming, IMHO.

Most people is NOT accustomed to parsing large amounts of written information. And particularly not information that is technical in nature. And particularly not medical information with all its latin terms and names and abbreviations.

I'm convinced that it is overwhelming to the majority of all newbies.

Old timers are accustomed to the whole Lyme thingy and all the ins and outs and terms and such. But we don't do newbies optimal service by assuming that they are like us.

They know little or nothing about Lyme when they first come here. They are in 1st grade.

And that is the reason why I'm proposing a more gentle, targeted, streamlined, structured, approach to introduce newbies to Lyme and all its complications.

Let me put more perspective on my perspective:

When people first come here, they are probably accustomed to totally rely on the doctor. In that sense, they expect to hear, and therefore WANNA hear, which doctor to go to so he can throw some tests and drugs at them.

We all know this is unlikely to work, right.

Lyme is so complicated by so many other things. And maybe you don't suffer from Lyme at all. Maybe it's Mycoplasma, maybe is metal toxicity, maybe you have Bartonella, maybe your hormones are low, maybe you have underactive thyroid, bla bla.

In other words, you really need to find the right LLMD, not just any LLMD. There are newbie LLMDs and downright bad LLMDs as well.

Therefore, it's important, IMHO, that the first advice we give to newbies is not to find an LLMD.

The first advice should be to prepare them for a minor ordeal where the patient him/herself takes centerstage.

This is not easily accepted by many people, because most people have this inherent faith in doctors, incl LLMDs.

What I'm suggesting is that "we" restructure the initial "Welcome to LymeNet! You have come to the right place." approach.

When newbies come here, IMHO, they walk away with two main things.

1) The name of a couple of LLMDs in their area.

and

2) 50 non-ordered links that only the fewest of them will ever bother clicking on.

When you were in first grade, did the math teacher rip all the pages out of the book, then stapple them back together in random order, throw them at you and say, "Here's what you need to know. Good luck."

I agree it's better than no book at all. But the teaching method can certainly be improved, don't you think?

Call me ignorant, but if I hadn't read it here, I probably wouldn't have known.

Thanks to everyone for all the knowledge, understanding and sincere support on this board...hats off to everyone for all your hard work It's greatly appreciated!

It helps us all to a happier, healthier future!

Fear/stress makes it much more difficult to heal and has even been shown to cause increased muscle pain/arthritis.

Despite what some say are completely unique experiences with Lyme - overall, I find it all very similar - that alone and that we are all still here to write about it - and there is usually someone who knows or has been through what you have - is not only validating and educational but it is also theraputic in its own rspect.

Fear/stress makes it much more difficult to heal and has even been shown to cause increased muscle pain/arthritis.

Despite what some say are completely unique experiences with Lyme - overall, I find it all very similar - that alone and that we are all still here to write about it - and there is usually someone who knows or has been through what you have - is not only validating and educational but it is also theraputic in its own rspect.

quote:

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Originally posted by laserred:
I'd like to add one of the important things that 'doctors never told me', that is stressed on this board, is when taking antibiotics... to also take pro-biotics!!! A good refrigerated kind. Yeast is another real bugger to deal with!

---

And what else did your LLMD neglect to tell you?

A newbie posted on LymeNet the other day about an LLMD who started treating her with IV Rocephin and Zith as his very first treatment after diagnosing her with LD. She had previously never been treated nor diagnosed with Lyme. Her ELISA was still positive. She described symptoms that were mainly arthritic in nature.

I know I don't know the whole story about her, but it sure smells of improper treatment approach.

If you the patient does not ask any questions, is not critical of the LLMD and does not know what the treatment and diagnostic options are, it's simply the luck of the draw that will cure you.

Knowledge is power. Particularly in complex diseases such as LD, AIDS, cancer, ALS, MS, etc.

Do NOT automatically assume that:
1) doctors fully know what they are doing,
2) doctors have an agenda where your health is in the #1 spot.

Michael

May I suggest that you contact Treepatrol to see if you can get from him some guidance in how to do this, and prepare a list of YOUR own for "newbies for dummies starting out"?

I'm serious, and I agree with what you are saying as all those links are overwhelming even if your mind is functioning correctly; which ours are not.

Another important thing to emphasize, this is a 24/7 lyme educational/support group board. Someone is always on here due to folks from other continents, etc.

just my 4 cents worth; inflation!

quote:

---

Originally posted by cmichaelo:
#5) Provide a few targeted links in support of #1, e.g. in decreasing importance,
- very simple summary of LD and coinfections

---

I definately agree with that one. Giving a newbie (like me) a page full of links when he has trouble even focusing on the screen is overwhelming. In addition, the information can be confusing and, in some case, contradictary. The best link I found the first week was on WebMD. (I know, people here hate that site). But at least it was clear, concise and made me begin to understand the nature and scope of this disease.

We've tried for years to get a separate section for newbies where we could post all the information needed.

I think it would be less overwhelming than all the links at once....and would save many people ALOT of time.

However, Lymenet has not been the same since the Bachmans left to go on with their lives! [Lou definitely needed time to hit the links! ]

So, for some reason, the newbies section has not gotten off the ground. It may even be underground at this point in time!

good dialogue here!

Even with the very best of doctors, llmds,
etc., you have to be in touch with your body.

Know the difference between a herx and an
allergic reaction. Have your doctor differentiate between them. Wish I had known what I know now, and maybe I wouldn't
be in this situation I am in now.

**A herx* should not be a burning reaction
to medication during a short period of time;
this indicates a "reaction"--whether allergic or more vasculitis type. Be aware.

Keep your body strong, and that means eating
the best that you can and having a vitamin
assay done on you. Vitamin deficiencies
contribute to allergies, leaky gut, etc.

Detox. Sauna, glutathione, liver supplements, massage, whatever it takes.

Cry some if you have to. Laugh when you can.

What is more likely to happen is that the sponsoring folks, who did not get enough donations last time to cover expenses, will become tired of the whole thing and fold. They have been doing this for years, not getting paid, and trying to keep bugs fixed, news added, and finding competent and willing moderators. After the Bachmans left, there were other shorter term moderators. Now they are back to having a family member as a moderator.

This reminds me of others who try to be activists, like the Lyme Alliance. When they got started, they received a pile of suggestions for things THEY could do. The founders thought that although they started with only a handful of people, others would flock in to help. This turned out not to be the case. When they needed computer help with the website, no one volunteered. When they needed a co-editor for the newsletter, no one volunteered. They were putting out a newsletter that reached thousands of people, which is very important in any attempts at activism. Folks have to be informed. Otherwise there's a lot of reinventing the wheel and individual efforts that are doomed to failure.

The newsletter editors were working women, one had to run the family business because of her husband's lyme disease, was home schooling kids, and finally had to quit because she had surgery scheduled herself.

The other editor had lyme, a disabled husband, and a full time job. Then her mother became disabled and moved in.

These are people who were putting out 110%, could not get others to contribute even a 10% effort.

This is just one example.

I hope that in these efforts to improve Lymenet, volunteering to do things rather than making suggestions for others to do is considered.

The list of links probably got out of hand because so many people offered other ideas that were not covered already. So, now we have too many? Personally, I am grateful to treepatrol and tincup for doing this out of the kindness of their hearts. Maybe it could be better arranged, but I couldn't do this and hope they are not upset and disappear.

In the past we have had a couple people who were insulted that anyone suggested they could find good info by doing a search of the archives on specific subjects. They seemed to think they deserved a special individual response to every question, even though it had been discussed many times before and was easily found (when search was working). Having expressed their displeasure, they did the welcoming of newbies a few times and then disappeared. Too much work evidently.

So, it is easy to complain. Not easy to do the actual work.

Isn't there a children's fable on this subject?

I wrote to Treepatrol, explained this, and offered to convert them for him.

Guess what? He said sure! And thanked me. Now, I notice, that when he adds a link, they are in UBB code. Great!!

I'm sure Tree, or Tincup, or anybody else helping out, would be happy if you volunteered to reorganize things for them.

Or, you could start your own page of links, set up neatly so that people can find what they need.

You could even go through the support group links and make sure they are all up to date, so when people use them to contact someone, it is still a valid contact. I did that for the CA support groups about a year ago. It probably needs it again.

There are lots of jobs needing to be done here. Not so many doers. I know not everybody is capable of doing all jobs. But if you see something missing, you could just start with whatever you are capable of.

We would all be grateful.

I suggest a few rounds of peer reviewing by a select number of people here on LymeNet.

I can guess who these people might be, but I'm not sure.

Please send me email off the list to let me know who should be involved as well as other suggestions you may have.

Lymenet is full of people volunteering their time. We aren't paid to do this. We come here sick, or as healthy family members watching someone sick go through this. But mostly, we are sick ourselves.

if you dont like the advice given, don't take it. If you wish to see new advice given, then give it.

We're all adults here and NO ONE can hold our hand through our disease.

I hope no one hates me for stating my opinion, but thats that and Im sticking to it.