Jump to content

Lyme Disease Question


AJVDK
 Share

Recommended Posts

How many of you have a "Clinical Diagnosis" vs the "Serological Diagnosis?

I am waiting for my blood work to come back right now, but been ready about how many people have lyme's and the lyme's may not show up on blood work. I guess I am just hoping my blood work comes back showing lymes. It just seems to fit so well with whats going on with me.

I am getting to the point that I am having a hard time walking due to my muscels are so tight and I have so much pain. So days I use my wheel chair becasue of pain, and not because of the dizzyness. Then I am like does lymes casue POTS, and NCS? Can you have both lymes and POTS?

For those with Chonic Lymes how much improvement have you seen with treatment?

Sorry for all the questions just uptight about blood work, and wanting to know more about Lymes!

Thank you! :)

Amy

Link to comment
Share on other sites

Amy,

Have you read the post DizzyDame started? I thnk you will find some answers to your questions there...

Also, did you go to a LLMD?? From your questions it is unclear what sort of testing you had done--i.e. what labs did the tests, etc.

Yes, Lyme can CAUSE POTS. That does not mean, however, that treatment will 'cure' all of your Lyme or POTS symptoms.

I am too early in treatment to tell you if it is working yet...

Lyme should be mostly a CLINICAL diagnosis...the testing still has a long ways to go. That is why it is important to see an LLMD.

Hope this helps.

Emily

Link to comment
Share on other sites

Emily,

I right now am waitning on the blood work right now. I just got mailed a western blot test, to have my doctor take the labs and mail. ( This is not the test I had done last week) I am waiting on a Call back from Dr. Martz office he is a LLMD in Colorado Springs. His name was givine to me by the LDA. After talking to a person form there office I really beleive this is whats going on. The bad thing is everything is out of pocket for lymes doctor and test? So right now I am working on all the money part.

Thanks for the info!

Amy

Link to comment
Share on other sites

Guest tearose

Clinical dx in 1991.

I am not sure why this is still so poorly understood...it's like Jupiter had only three moons until they developed stronger telescopes and lenses and then they discovered there were more moons! :)

What I mean is, yes, lyme can bring on all sorts of problems including pots...hey, it is an attack on our bodies. But there are no "black and white" or clearly defined lines here...unfortunately.

I do not know if the relapses I have experienced were "chronic lyme" and I really do not believe they were. I absolutely do think I got "bit" by something and it caused my lymphedema and subsequent pots. How many people get lymphedema on one side in their leg and arm too? What really happened to me and why I still relapse and remit...I do not know in this moment. I did do oral antibiotics for 3 months and IV for six weeks. I do not take long term antibiotics anymore because they just started to cause me to get allergies and they are needed if heaven forbid I get a new infection and need to treat it. I found that antibiotics were more like anti-inflamatories and the consequences outweighed the benefits...in MY body.

If you are dx clinically, why not give the treatment a try and see? You will not know unless you think it through and decide.

I do believe there is something else "out there" not lyme, that caused this in me but, it is a lot like lyme.

I do believe in another 10 years more information will be known.

There are too many of us who want to know and we don't need any "assumptions"...we need and deserve good, scientific studies and hopefully someone out there will see that this needs much more in depth study and will do it!

Whew, I get so serious about this...I just don't want to make it seem that for sure it was lyme that caused my pots because I really... and the doctors really don't know.

I do not regret taking the antibiotics, I just think IF I had lyme...it has been treated and is gone. What I have is permanent damage due to the battle my body went through to get rid of whatever nasty thing was in me.

I had my "first onset of symptoms" in 1991 so I am a long timer when it comes to life with POTS and life the residual damage from the mystery onset...with and without treatments and the journey through the medical maze...keep looking for the best doctors and keep looking for answers. I really do feel fortunate to be able to look back on this winding journey...and have no regrets. I did the best with what was given me. You must be strong of spirit and make your best decisions and then you too will be at peace with all that is yet before you.

best regards, tearose

Link to comment
Share on other sites

Guest malosp

AJVDK

Hey, I know, it can be very frustrating trying to decide if you have lyme or not.

I went through it. I only had a clinical diagnosis in the beginning. Taking the antibiotics and getting worst in the beginning is what made me know I had lyme.

And yes, some of my symptoms are improving. I have defintely noticed that my heart isn't as fast anymore. Now I just get it when I herx. I also noticed my heart is not as touchy anymore like when I eat. I remember I used to get a fast heart rate after eating and couldn't figure out why. The dizziness is completely gone. My brain fog is better. My muscle aches went pretty fast. I still feel ill, and like I have something in my body that doesn't belong there....for sure. And the CNS symptoms do seem to be the last go go.....or the POTS like symptoms. The lyme obviously does a number on the nervous system. And I have heard that lyme and possibility co-infections irritate the nerve endings to the heart. Just remember the longer you have had it the more careful and slow you probably need to be in treatment. But it does give us hope if it is lyme. Get it under control (if you have it) get it in remission, then maybe some day they will come up with a total cure.

Hard to believe that this disease has been around forever and discovered in the 70's but yet it is still misdiagnosed, misunderstood and there is no quick cure unless you catch it right after the tick bite. And many know that now and that is why doctors are giving an antibiotic immediately after any tick bite.

Link to comment
Share on other sites

Malosp,

You are very right about taking treatment slowly! I have really had to do that! My first go around we went to quickly and it overloaded my ANS so much we had to stop and re-stabalize.

It is important in choosing a Lyme doc to find one that will work with you in the way that you want. Some are very aggressive and believe in only doing high dose IV therapy, which I know I could not tolerate yet. My POTS doc would not have wanted me to do that either!

So, I have found a Lyme doc who 'gets' how very fragile my system is right now and we are just taking things very slowly...it is hard to be patient though!

I am still in the 'feeling worse from the abx' stage, but hope to see 'light' soon! You are right about it really affecting every system of the body. My POTS syptoms are awful when the abx kick in...I become a wet dishrag and am just miserable.

Ihope to continue hearing more about your journey with Lyme and POTS....it's a unique combination, eh?

I also agree that it would be nice if docs did prescribe abx immediately after any tick bite or test the tick if the person brings it in. Ticks are everywhere where I live and doctors still do not follow this protocol. It makes me soooo nervous for friends and folks we talk to!

Emily

Link to comment
Share on other sites

Guest malosp
Malosp,

You are very right about taking treatment slowly! I have really had to do that! My first go around we went to quickly and it overloaded my ANS so much we had to stop and re-stabalize.

So, I have found a Lyme doc who 'gets' how very fragile my system is right now and we are just taking things very slowly...it is hard to be patient though!

I am still in the 'feeling worse from the abx' stage, but hope to see 'light' soon! You are right about it really affecting every system of the body. My POTS syptoms are awful when the abx kick in...I become a wet dishrag and am just miserable.

Ihope to continue hearing more about your journey with Lyme and POTS....it's a unique combination, eh?

Emily

Dancing Light,

The first 2 months of antibiotic treatment are suppose to be brutal and I have seen that. I have found you have to go slow and back off if you herx too hard. Hard lesson to learn because you just want to kill the lyme.

And I agree with you when I first started antibiotics my POTS symptoms went nuts. But even at 2 months treatment some have now improved.

At first I was very happy that I figured out what was causing my symptoms, but then the reality also set in, that this is going to be a hard long road.

I actually wish my pots was caused by mono like my orginal doctor thought. The lyme cause has been very painful so far.

But again, I really have no choice but to continue. And I think that attitude is key.

Yes, lets keep each other and everyone informed of our lyme and subsequent POTS journey.

The CDC needs to encourage new and more accurate lyme tests be developed. I think they have more accurate tests for dogs then they do for humans.

Link to comment
Share on other sites

malosp,

Well said my fellow Lymie/POTSie! :)

Everything you said really hit home for me...it IS such a long hard road. I wanted an answer, but was terrified of it at the same time.

Yesterday, I had a doctors appt and was so incredilby exhausted, ill, and in fight or flight just from that...it got me a bit discouraged to say the least! It's such a slap in the face to realize I can't leave my house at all without such consequences, and that even when I stay home I feel horrible!

It's hard to imagine what healing will mean...as you said...but we'll find our way through this together. It really is helping me to find others with Lyme and POTS to talk to b/c controlling the ANS symptoms to get through the treatment of Lyme has been so hard...and my Lyme doctor sometimes is baffled by me!

Yes, the first two months were brutal! You are right. I wanted to die!

Well, as you know, I am bieng the tortoise and not the hare in this race, and just hoping that some day we will feel better!

What will healing mean? Being able to leave the house? Being able to watch a movie without getting sick? Hmmm....I am trying to surrender that and just be patient!

Thanks for your great posts!

Emily

P.S. Have you had people, now that you 'know the cause' of POTS...constantly asking "Are the abx working yet? Are you feeling better yet?" etc. etc. "Why aren't they working yet?"

I keep explaining the herx thign over and over again and how you have to feel worse before you feel better while killiing off the lyme, but it isn't sinking in!

I know it is b/c they love me and just want me to get better. But it is not helping me try to keep my attitude of patience, and 'slowly but surely'

Link to comment
Share on other sites

I agree that it is nice to have a group with both Lyme and POTS to compare notes. First I found out I had an autonomic dysfunction in March 2005 when I fainted and had my first tilt table test. After lots of research on my own with the help of the internet, I found this Forum and found out that I had Dysautonomia. I went to VA, from Louisiana, to see a Dysautonomia specialist and was diagnosed with POTS. We still didn't know the cause and eventually I ended up with gastroparesis. All along, I had a horrible "rash"/stretch marks spreading all over my body. Again, thanks to the help and support of this forum, I was directed to the Lyme Disease website and found out not only do I have Lyme Disease but two co-infections as well. The "rash" is a bartenella rash and my Lyme specialist has never seen such a severe case. It turned out that my parents also tested positive for Lyme and because of my medical problems from the time I was born, it has been established that I was born with Lyme, contracted while my mom was pregnant. So after 18 years of not knowing and no treatment, I am at a chronic state and my organs seem to be shutting down. I also now have a thyroid condition, which I did not have when all of this started. I am going to the Mitral Valve Prolapse Center in Birmingham in October. I am sure they will probably also find that I have that. Why not, I seem to have everything else. They also specialize in autonomic disorders. I will going through a battery of tests, AGAIN! I think this is never ending. I have met and chatted with many others who have had POTS much longer than I have and it seems to just be continuously progressive. I just don't know what else they will find as time goes on. My lyme doctor doesn't understand why the treatment is not making me any better. The rash is still spreading and the symptoms just seem to keep getting worse. Especially the Chronic Fatigue and nausea. My heart is up one day and down the next as far as rate and my blood pressure. I spend most of my life on the couch. It is really tough what we are all going through and no one seems to understand. Thanks goodness my parents do.

Link to comment
Share on other sites

Guest malosp

Chrissy and Dancing Light,

Yes, it is good that we have found each other. Lyme and POTS symptoms what a combination!

Why some people get the arthritis, others get the CNS problems is something I have pondered many a time???

I do not have arthritis...how about anyone else here?

And yes, Dancing Light, I actually got that yesterday where someone asked if I was done with antibiotics yet. I have only been on them ~2 months.

I still have fatique, I still have some chest ache in my upper chest area near my clavicle. My heart rate is coming down on average. It used to be it was not unusual to be 90 or more just laying around. Now I am back in the 60's and 70's. Still can tell though that if I was to over do it it would go high. I really haven't tested lately if it still goes up significantly upon standing.

I guess mainly what I am doing now is "ACHING" and still wake up at the same time every nite between 2:30 and 3:30am. Then it is hard to go back to sleep. I have no trouble falling asleep but I wake up like clockwork between the time I stated. Can't wait for that to change. I feel a full nights sleep is probably critical for healing.

We should compare our herxing. Even though I have been only on antibiotics 2 months and ~ 2 weeks I have learned that the lyme cycles around the 22nd to the 28th of each month. I actually thought everything was going to be a breeze for me because I had been on biaxin for almost a month with hardly any herxing and then boom around the 22nd I noticed that I again was achey, some tingling/numbness, fatique and sweats. But I understand that with each cycle as you are killing off the lyme the herxing gets less and less.

How about you guys what happens to you when you "herx"? Do you herx all the time or does it come in cycles where it is worst? Do your POTS symptoms get worst during these cycles?

I strongly believe the body can heal itself but it will take more time the longer you have been ill. So hang in there both of you.

Heres to finding out finally what is causing our POTS which gives us hope that it will improve.

Link to comment
Share on other sites

Guest tearose

A dear friend of my with "presumptive lyme" on long term antibiotics developed blood poisoning (syrum sickness) organ breakdown and died shortly thereafter.

Two months on antibiotics CAN be deadly in some.

I DO understand the complexities of this topic and believe this is not the place to discuss the pros and cons of lyme treatment and ask that you take that to a personal topic.

FACT is, I do not know nor does anyone else know for sure if clinical dx lyme WAS really lyme.

We may never know.

POTS can be primary or secondary to many things and POTS in itself is enough to deal with.

Link to comment
Share on other sites

I think it's important to be able to discuss how lyme affects pots and vice versa, because it can make for a complicated situation.

Do the rest of you post on lymenet as well? Maybe we can exchange user names and start a discussion on there regarding more of the treatment side of the lyme. Just a thought.

I was also diagnosed with reactive arthritis due to a salmonella infection. These days I have no clue what makes me feel badly - too much going on!

I think a lot about the healing aspect as well. In fact my husband really got on me about changing my thinking from 'I'm trying to get rid of the lyme and hopefully my pots will improve' to 'I'm working towards health (not just the absence of disease)' He's been a big support, pushing me to have hope and imagine myself doing things like riding bikes, hiking, etc. Right now that still seems very far off to me! I find I typically limit my thinking - I think I'm almost afraid to get my hopes up - but I'm trying to keep a positive attitude and just take it day by day.

On that note, I hope everyone has a wonderful weekend!

Pam

Link to comment
Share on other sites

Guest malosp
A dear friend of my with "presumptive lyme" on long term antibiotics developed blood poisoning (syrum sickness) organ breakdown and died shortly thereafter.

Two months on antibiotics CAN be deadly in some.

I DO understand the complexities of this topic and believe this is not the place to discuss the pros and cons of lyme treatment and ask that you take that to a personal topic.

FACT is, I do not know nor does anyone else know for sure if clinical dx lyme WAS really lyme.

We may never know.

POTS can be primary or secondary to many things and POTS in itself is enough to deal with.

Tearose I am sorry you lost a friend to illness, but I am not sure what was meant by your post. I don't think anyone was talking about the pros and cons of lyme treatment on this particular topic other than you. We were just talking about our experiences with lyme. I don't think I said I couldn't decide whether or not I should be on lyme treatment? I have lyme and was diagnosed by a very conservative doctor through labs and clinical diagnosis.

And yes antibiotics can definitely have ill effects but they also save many lives. Many drugs can cause very ill effects even ones I have seen used on this site. I work in the medical field and I know that even advil has been linked to heart disease and death. We all take a chance whenever we use any drug.

Again, I am not sure what your reason was to point out to me that people die from 2 months of antibiotics. People take dangerous drugs for cancer, Lupus, MS and on and on but that is theirs and their doctors decision. People may have permanent CNS damage from certain anxiety and anti-depressant drugs but I would never point that out to someone on this forum who has decided to go that route. It is their decison.

Since POTS is not a disease in itself, and has many causes, I don't know how you can talk about POTS and not talk about the cause in your posts.

It is obvious to me that is much controversy on this site about lyme. I am not sure why.

.

Link to comment
Share on other sites

Malsop, I think it's pretty clear what Tearose is saying-- no treatment is without it's pros/cons. And, unlike MS, Cancer, etc., POTS in and of itself is NOT fatal. Tea seems to be pointing out that some treatment side effects can be fatal in relation to treating Lyme. That's not a controversial thing to say. It's a reality for lots of medications. I think everyone here is pretty much on the same page with that.

Consider this the word from me, as the administrator of this forum:

The lyme topic is not all that controversial.

However, when lyme or other issues become the primary discussion given the current lack of empirical research showing a direct relationship to POTS, NCS, PAF, MSA, it is controversial--moreso for those with a clinical dx as opposed to a positive serological test-based dx.

This is not a lyme specific issue either-I feel the same way about EDS, which is why I belong to a separate forum for that. I don't post here about my frequent joint dislocations, pain management issue for my spine, hips, hands, etc.-- that's the bottom line on this issue.

This forum is intended to serve those with dysautonomia, inclusive of all etiologies, lyme included. However, this forum has limits with regard to how much forum and site resources will go toward specific etiological discussions, such as EDS, Lyme, post-viral syndromes, etc. You will find that Michelle keeps the DINET site strongly based in content that is epirically validated. Lyme may have more info epirically substatianted at some point... but it's not there yet.

Nina

Link to comment
Share on other sites

Nina,

Do you think that you could clarify what you are saying? I was not clear from your post whether you are saying that it is appropriate for us to continue these discussions about Lyme and POTS or not?

I would really appreciate it...as I wasn't clear from your post.

Thank you,

Emily

Link to comment
Share on other sites

offshoot discussions are fine as long as they don't overtake the forum--also, alternate opinions about tx are fine too. I guess I felt the need to stick up for Tearose's viewpoint that tx have risks. sorry if I rambled--long day.

Nina

Link to comment
Share on other sites

I guess I don't see the Lyme discussions as 'offshoot discussions'?

I had actually noticed that Lyme was coming up more and more on the forum lately, and wondered if it was within forum rules. I had actually planned to email you and Melissa to see what was 'in and what was out'.

However, I really do feel that the discussions about Lyme and POTS together are so important. I know that they really help me a great deal.

I agree that Lyme is a tough area. As my POTS doc has said, 'this is a very, very murky area of medicine.' Still, it was him that helped me and encouraged me to pursue the Lyme diagnosis. I think there will be more and more evidence with time of the connection b/w the two. Unfortunately, like Dysautonomia, Lyme gets little attention and research money.

Okay, regardless of that part...

I completely understand that under the new forum rules topics must tie into Dysautonomia--which I think is very important to keeping the forum managable for all.

I just feel very strongly about the importance of being able to talk about Lyme and POTS together. For me, I may be being treated for Lyme, but ANS problems are still my PRIMARY issue. Dealing with my ANS problems remains our biggest challenge medically and, for me personally.

I also agree that all treatment choices have risks...and I do realize that I could die from this. But, I also have carefully weighed the pros and cons. I have reached a point where quality of life for me is so low, that I must take this risk. I am supported by top doctors, my friends and family.

If it was not for DINET and others here with Lyme disease I would never have been able to find my way through the process of finding a Lyme doctor, understanding how Lyme and POTS are inter-related, and getting up the courage to pursue it. For me, that in and of itself speaks about how strongly I feel about the importance of this forum.

I do not want to push Lyme on anybody. That is not my intention. I only want to support others who want more information.

If one more person finds that Lyme is the casue of their POTS, or cervical stenosis or whatever b/c of this site and the dialogues we have here, that means a lot to me.

At this point, I cannot even say for sure if I have Lyme, but also, there is some evidence that anyone with a multi-system illness such as Dysautonomia that does that respond to other methods of treatment deserves a shot at long-term antibiotics. Recently, it was discovered that the antibiotic Rocefin helps ALS patients...but b/c of some non-specific effect of the Rocefin, not what antibiotics are made for. Funky stuff. So, I don't think it's super far fetched for those of us who have exhausted all treatment options available to us.

I honestly thought this thread was fascinating and so helpful and was confused by Tearose's and your post. And, you know that I support you always...I just was a bit taken aback. Sorry, just being honest.

For me, connecting with others with Lyme and POTS together, or at least suspected Lyme, is incredibly helpful and I would like to continue being able to do it here on this site if we can do it within forum rules. I feel very safe here on DINET and like connecting with others who have the ANS stuff since it is my primary issue. It's helping me so much...I just have no idea whether or not I have Lyme. But, I do know I have Dysautonomia!

If you would like us to take our discussions to lymenet, please let us know how to do so without it being considered soliciting. I will understand whichever direction/call you make.

I know as moderators you are put in difficult situations and have to make tough calls, and I just want to make sure that I am within forum rules if I continue to post about Lyme...

Thanks! Sorry to add stress to your already high stress level...we all have off days and maybe I am having one too and over-reacting. My ANS storms are vicious these days!

Emily

Edited by DancingLight
Link to comment
Share on other sites

emily et al -

regarding the reference to lyme being an "offshoot discussion", lyme is an "offshoot" of dysautonomia just as EDS is, as well as other things such as mitochondrial disease, chiari, etc. things that may be related but aren't "just" dysautonomia can be thought of as offshoots. nothing more, nothing less.

no one has said that discussions of lyme & its possible relationship to POTS/dysautonomia are off limits. there are grey areas, as with many things, but as you know there have been many discussions that have been fine. but, as with other topics, sometimes things can go off in a direction other than where they started.

B) melissa

Link to comment
Share on other sites

thanks!

we were posting at the same time! i just edited my post and when i re-posted, you had posted! we are always stalking each other! yikes1

okay, i am really going to bed now!!! and praying for some desparately needed sleep.

shouldn't you be asleep too? just bugging you.

anyways, sorry to be such a pain, i'm a bit of a 'people pleaser' and my loyalty to DINET is strong...so it's hard for me not to get upset sometimes. thank you for clarifying off-shoot...maybe i need to work on my vocabulary??????? B)

Link to comment
Share on other sites

Guest tearose

Sorry to have stepped away...I'll be out of town but wanted to make one last comment before I leave the eworld behind...

...this is just my opinion...

I do believe it is important (if one has the strength) that we address what may be our initial "first cause" of dysautonomia to help us better treat and improve our health. What gets me frustrated on a personal level is when we "assume" that Lyme was the first cause when it is NOT clear that Lyme was the cause.

What is to say it isn't West Nile Virus or another type of parasite or whatever....

I DO believe a long solid course of antibiotics can help some people. Heck, I am one who did it! I did both oral and a PICC line of antibiotics.... I just wanted to make clear to those who are reading the thread for information that they really understand that antibiotic treatment is another "battle" to our dysautonomic bodies and we all respond differently. Weigh the pros and cons very thoughtfully.

I also don't think it is honest or accurate for me or anyone to say they "have Lyme" or "had Lyme" if the tests were not conclusive. I think it is more honest to say "presumptive Lyme"...

It was horrible to loose a dear friend who had kept trying so hard to fight and win...I miss her.

anyway,

I try to be part of a team here...sharing information and insights so others do not have to suffer from similar pain and to share successes to see what may work.

... time to get some sleep...I have to leave early...

catch you in about 10 days...

best regards,

tearose

Link to comment
Share on other sites

Guest malosp
If one more person finds that Lyme is the casue of their POTS, or cervical stenosis or whatever b/c of this site and the dialogues we have here, that means a lot to me.

Emily

Dancing Light, your above statement basically "hits the nail on the head" about why it is important that we can stay on this site, following the forum guidelines. Your above statement also shows that your a very good person.

I guess, that is why I came back and posted after finding out I had Lyme. I tried to remember how I felt, and how I wished someone would have at least put all the possibilities out there, so that I could make up own my mind.

I remember how scared and afraid I was, when I first posted on this site, when I couldn't find out what was causing my CNS symptoms. And my CNS symptoms had been only going on since September 2005 not years. If I can help one person not have to go through long term antibioitcs because they catch it early (if that is what they have) then I will feel good.

I agree with Dancing Light, I love this forum and hope that we can continue to post here within the guidelines. Mainly because those of us with lyme caused POTS have stumbled on this site orginally because of our POTS symptoms. It feels like home.

I came back because I figured IF I came here with the symptoms of POTS and had lyme, others may have or will in the future. And if Lyme is one of the causes discussed on the site then they may benefit from the information. And there are conventional research studies that do show that Lyme causes POTS.

POTS is such a unique aspect of Lyme that many Lyme sites don't even discuss it. That is why I found a kinship here. If you take lyme off the site, then this forum is not presenting all the aspects and causes of POTS as presented by its members. The good and the bad.

I will write the moderator and ask for her guidance.

I hope we can come up with some guidelines so that we can continue to discuss our POTS symptoms even if our cause is lyme. Wish it wasn't, believe me.

I'd hate to see it be taken of this forum, not only for those that follow us but also because POTS is such a unusual presentation of lyme. There must be some reason for those of us that have it, when others don't. Genetics? I don't know, but there is knowledge in numbers. And we can share the knowledge with ourselves and others. And there are always pioneers in getting a disease its recognition eventually.

I understand TeaRoses pain about her friend. Thanks for coming back and explaining further TeaRose. It is just hard to see in print, what most of us lyme patients already know in our hearts, that there are risks involved. I have weighed the risks and benefits and because I was going down hill, I chose the antibioitcs and I have stopped the downward slide.

I hope that the CDC can help research come up with a more accurate test for lyme, so that it can be clear whether or not someone has lyme, so that no person gets treated unnecessarily or gets denied treatment if needed. And stop this controversy that exists everywhere about lyme.

Link to comment
Share on other sites

Em, I'm posting my reply to you here because I think it will help others regarding what is/is not soliciting and/or medical advice. I'm speaking of both b/c there is some overlap. For those who were here during the "ANSAR" thread, that's blatant soliciting b/c the person was looking to be employed by the company that makes the device and was essentially advertising here and giving people instructions on how to get their doctor to buy, use the device.

It's okay to say something like "you can find more info on this at lymenet, here's the link" -- soliciting would be "you need to (should, etc.) go to lymenet" or posting it as it's own thread title "you all need to go to lymenet". Sharing information is the whole point of this forum--this is why I'm constantly telling people to look at the help yourself section b/c there are links to all sorts of other resources, including DINET, NIH, Medline, NDRF, EDNF, etc. I can add lymenet info--it's not a site I've been to--but I have instructions on how to send me links that you feel might help others. I review all the emails/pm's I get, and I do sometimes add new links--sometimes, though, folks send me links to things I already have.

Imploring others to go to place, person, site, or to take a particular medication, treatment, or to takeyour side in a public forum argument, etc. is solicitation and/or giving out medical advice--both of which are forbidden by the forum's rules.

So, it's okay to say "wow, you sound really sick, you should go to your doctor or find a new one"

but not okay to say "you need to go to dr. so and so" or "you need to take abc medication". It's okay to say "I did poorly on xyz medication, it made me feel (fill in the blank)." NOT okay to say "don't take xyz medication"--that's giving medical advice.

And you shold know also that Melissa and I frequntly email back and forth when there's something in a grey zone. As a last resort, we'll pull Michelle into the issue to clarify. Hope this helps you all--although I probably shouldn't be typing before my first coffee infusion has made it into my blood stream!

Nina

Link to comment
Share on other sites

Thank you for clarifying...

I pay very close attention to the rules, but you and Melissa are right about the gray areas!

I 'think'/'hope' I stay within those rules at all times....I definitely try to!

I will continue to post with others about Lyme and POTS, always keeping in mind what is appropriate. If at any time it feels 'not okay' to you and Melissa, I knwo you will let me know...but hopefully I will not put you in that position.

There are a few topics right now that have caused a bit of tension...and I though this might give you a chuckle...b/c I know I have been cranky myself. I just said, "Mom, people are cranky on DINET these days!" and she said, "Maybe it's this darned hot weather!" I cracked up, b/c it is making me cranky! :D

Hope you get a little smile...and got some coffee in you! You ARE appreciated, and I know you and Melissa are often put in tough situations...

Emily

Link to comment
Share on other sites

Thanks for the chuckle :) Yes, I've noted the crankiness too, even in myself. I was just telling Michelle and Melissa that I chalk it up to it being so hot --needing to go outside to get errands done (I just got back from a mandatory run to the pharmacy), sweating like a waterfall and my heart thumping like a sprinter's, followed by having to be cooped up in my house too long. :( Mix with others in the same boat and there's plenty of cranky stuff to spread around :D I've said this before--it's just part of the life cycle of a forum, ups, downs and in-betweens.

As for whether or not one is or is not following the rules, you would KNOW if you weren't because one of us will write to you. So if you didn't get an email or PM saying something's wrong, then all is good with the world. :D The only time I don't write is when I delete duplicate posts, or fix a spelling or spacing error.

Nina

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...