Also, it doesn't sound as if you're seeing a very knowledgeable Lyme expert but perhaps just your PCP?

No Lyme specialist would ever treat for such a short time.

I suggest you post in Seeking a Doctor forum for someone to answer you as to where the closest Lyme specialist would be for you.

But, more bad news, there aren't that many down in your area.

But it's worth traveling to get treated properly for this disease.

Treating Lyme ineffectively can just make the disease more resistant to treatment.

Sorry I can't give you any good news. But don't wait. Find a good Lyme doctor.

Lyme standards????What are the Lyme standards....it seems to me that different docs have different standards...! Treating Lyme ineffectively...???? It just got to overwelming and ...and i had to let it out.
As i said i didn't mean to offend anyone. And yes i am back reading....I am sorry.

you're cool with us...

my gosh...I think you are in good caring hands as far as I can see....now

I just hope your PCP can ride out a long treatment...as..believe it or not...you DO have late stage Lyme..maybe NOT chronic yet...which is good...but the delay has put you behind the curve a little.

Now read my signature and hopefully it will help.

Trout

I just got really sick kinda like I hit a brick wall in May of this year. I am a single mom of two. a 1 year old baby boy and a my 3 year old baby girl.

I am soo sick I can't even take care of my two children let alone go out on the weekend like I use to.

My childrens father has them full time right now I can't even get out of bed most of the time.

I understand what you are going through. I come on here to get some advice because I am so very new and lost to all of this. I need all of the support I can and it seems like you could too as well.

Please ask any questions you have & then sift thru the answers & decide what applies to your situation.

We have several new members who are young & may want to e-mail to share info, concerns, frustrations, etc, etc.
I just responded to "Softball Mom" in NC in General Support - "New member/ starting treatment"

So glad all of you found LymeNet.
Welcome to the group!!
I hope you find this website as helpful as it has been for me.

On the the hair loss and muscle pains. I had a very major problem with this also. My hair started to come back several months after start of treatment and the major muscle pains went away after several weeks of initial treatment. So there is hope on those areas...

On the other stuff, Here my .02$ worth.

Everybody has to remember that the treatmentd we all are reciveing has to be considered as E X P E R I M E N T A L. The book on this disease is still being written.

It is know that a lot of people find immediate relief from the CDC treatment guidelines which suggest 4 weeks of ceftriaxone in some cases. This is great but as the CDC says, replases may occur and re-treatment may be neccesary. Thats all that is known for sure. All the other LLMD stuff has in general been shown to result in improved recovery but it is still being refined.

Given the speed at which medicine works, I would think that it won't be for another 10 years that the LLMD treatment methods are known in the general medical community. Just look how long it took for AIDS to be recognized and standardized treatmens developed.

Those with Lyme unfortunately have a EMERGING disease by definition. This also goes for the co-infections, which have been around for ever and a day, yet are still considered as emerging....

As a first step any competent Dr, after diagnosing Lyme will treat it, most likely according to CDC or Infectious disease guidelines, making adjustments as needed for the particular risk factors of the patient. Nobody here should question that... they can't because either they are not a Dr, or if they are have not done or do not have access to the complete patient workup and history.

This site is excellent for information exchange, although many times one has to filter the information and sort out fact from involentary wishful thinking. As good as it is, it is not a DEFINATIVE source for every thing about Lyme and its treatment. Nor is it aplace to get DEFINATIVE diagnosis. It is a place to get IDEAS...(Maybe that could be stated on the site in some bold letters or something)

For those that have been around for a while, this filtering effect is automatic but for someone new, I can see where it is possible to question the resource due to conflicting, yet definative sounding statements.

It often burns my butt (which I sit in a lot) to see people here saying things like "it is lyme for sure" or other that say "6 weeks is not enough". Even LLMD's say 6 weeks during intial infection is enough, and some of these the tops in the field. These types of proclamations only serve to provide those that consider us a bunch of wacko fanatics with much needed ammunition to prove thier point in the general medical community. Not everything is due to Lyme and Not all lyme is the same. This sounds simple enough but some people seem to forget this simple reality.

That being said, unfortunately this is for the most part an unmoderated forum and as a result may release to public consumption impressions that can be miss leading.

Also as a positive note, that while un moderated, it is very stable in comparison to many other sites which are also un moderated... this is a very good thing.

In the end, sick people want to feel that they completely understand their disease and want to feel that the treatment course they are on is correct and will have a good outcome.

I think that this is the cause of the "you have this and you should do this" type of posts. Unfortunatly, this is human nature but it is good that everyone be remined periodically that it is not good practice to make definative statements that might be misinterpreted by others.

I was 29 when my husband and I were diagnosed. There was no internet, no chat board, no pubmed, no "finding a doctor" resource, no way to compare symptoms, no email, no support group. Just me, in confusion, fear, and pain, watching my husband apparently going mad and dying.

I got lucky -- I had a friend with LD, and she pointed me to a doc who could diagnose and treat us -- enough to hold off the worst of the symptoms. I did what research I could through the small local medical library--a very slow and painstaking process.

Then came the internet years, but I could only sneak onto Lymenet at work, and the phenomenal resources of the modern Web were still in their infancy.

As confusing and frustrating as these boards can be, they are far better than the isolation and informational black whole that went before.

I understand you must be really confused and frustrated and having a hard time coping with your new "lifestyle" of being ill. That is a very hard one. I still cry now over everything I've lost due to this predicament.

I am 36 now, and got ill when I was 21 - probably first infected when I was about 15. I have been to MANY doctors over the years as you can imagine. Some seemed really knowledgeable and promising and were really nice to me and so I stuck with them - but in the end realized they didn't have a clue what they were doing. They'd get frustrated with me as I was still coming back and they did not have the answers to my problems, so the problem must be ME.

I regret that now, but it's not anyone elses fault because A. I didn't have the internet then and had no clue what direction to search in and B. I did not seriously consider Lyme myself because I believed lots of misconceptions such as "you MUST have a bullseye rash and arthritis". I didn't have those sx. (I have all the others though). Ihad a few Lyme Disease tests over a decade or so, all negative. Of course, I did not know about testing, or that those chronically ill OFTEN test negative.

So, what I would suggest to you (uh-oh another suggestion, but a nice one I hope) is to go to www.ilads.org for instance and read the stuff written by the experts themselves. Research, research and then research some more and then make your conclusions. "Arm" yourself.

Listen to those who've been down your road so that you may take a shortcut and learn from their mistakes (which is what people have been trying to help you do, but I know, it may sound a bit overbearing).

Educate yourself about treatments used by experts in tickborne illness who have LOTS of experience in just this field. Then, if you still do not, or can't go to see an LLMD at least you'll be better equipped to judge whether your PCP really does know what they're talking about.

I read your post a while back about being treated by your PCP. I wanted to respond but, chickened out after reading some of the responses you got. Why? Because there are some on this forum who swear by their LLMDs and think all other Drs. are "ducks". I didn't feel like getting beaten up again for what I am about to write. I completely disagree with that kind of generalization and think that it is rude of people to chastise those who might not have access to a so-called LLMD, or who might find another type of physician to be helpful.

I was FINALLY properly diagnosed by a PCP, who happens to be a D.O. She referred me to an Infectious Disease MD. Both of them have given me the best and most aggressive care I could ask for. After being told that I really should see an LLMD by a fellow Lymenetter, I tried to get an appointment with a supposed top-notch LLMD. When the receptionist told me it would be a minimum of a one month wait and I would have to show up with $700 in cash and he didn't take insurance and his specialty was psychiatry, I decided that was not a logical or a smart move, given that I am not that financially solvent. This was not an option for me.

Many others have done quite well with LLMDs and have found a way to work around the insurance issues. I don't have the strength to deal with that kind of financial stress. My PCP & IDMD handle all the paperwork, monitor my blood, administer my meds and see me once a week. They also work with me on alternative therapies. And, As David said, treatment is somewhat experimental. My Dr. told me right up front that what will work for me is a crap shoot & I may need to try various therapies. Sounds like your PCP is doing the same.

I stopped logging onto Lymenet for a while after I was offended by a fellow chatter who told me I was wrong, wrong, wrong about something really menial. After I calmed down, I realized that this is just one person and this person has been sick for a long time and is probably just frustrated. You will notice that there a a few of these people who have been on here for eons and do not seem to be improving, despite the omnipotence they place on their LLMDs.

All that said, I think there are some really knowledgble people here with great advice. I have learned tons from the folks here. I have just learned to tune out the ones that push my buttons. Maybe that is because I have 20+ years on you and have mellowed with age.

Do whatever you can to get well, with whatever reaources are available to you. If that means you work with your PCP, then do it. You have to get better and you have to fight the best you can without getting all stressed out by what others say. Use Lymenet as a resource of information that you can base discussions with your PCP on. There are things you will learn here that you Dr. may not know about. You have to be a part of your own healing. Knowledge is a great tool.

I wish you well, kiddo. Jang in there and try not to let the stress make you even sicker.

I would like to address some of the things that you did not want to be posted to you.

Please do not take this wrong, I am only trying to explain things so that you'll have a better understanding of what really was being said.

AS FOLLOWS:

You haven't been treated for very long at all, yet by Lyme standards.

I believe that the person saying that statement was referring to the fact that you had only been treated for 2 days when you wrote that post. And, even by any doctor's standard, LLMD or not, two days is not enough to be considering whether the abx is working or not. I could be wrong, but, I truly believe that that is what that person was referring.

And since your bulls eye rash (a DEFINITE for having Lyme) was three years ago---- you have late Lyme and the time before you have reached a remission will be longer than those who started right after a tick bite. Sorry, but it's the facts.

Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is pathognomonic of Lyme disease and requires no further verification prior to starting 6 weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate.

Here's a good explanation of the stages of LD:

Stage 1 (primary Lyme disease)
Erythema migrans rash in 60 - 80% of people
Fever
Headache
Muscle aches (myalgias)
Joint aches (arthralgias)
Some patients have no symptoms
Stage 2 (secondary Lyme) - days to weeks after untreated primary Lyme
Multiple erythema migrans
Facial paralysis (bell's palsy), or other facial nerve problems
Meningitis
Heart block
Heart swelling (pericarditis, myocarditis)
Testicular swelling (Orchitis)
Liver swelling (hepatitis)
Eye swelling (iritis)
Stage 3 (tertiary Lyme) - months to years after untreated primary Lyme
Recurrent joint swelling (synovitis)
Recurrent tendonitis and bursitis
Mental and behavioral problems (psychotic behavior, memory loss, dementia, depression, sleep disorders)
Carpal tunnel syndrome and other nerve problems (peripheral neuropathies)

Also, it doesn't sound as if you're seeing a very knowledgeable Lyme expert but perhaps just your PCP?

I quote from what you posted, ``Also I have talked to so many doctors last week and my PCP was the most educated on the disease. ``

No Lyme specialist would ever treat for such a short time.

An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long term antibiotic therapy.

I suggest you post in Seeking a Doctor forum for someone to answer you as to where the closest Lyme specialist would be for you.

As you can see, this was a suggestion. Many of us suggest that because the majority of new poster's here on LymeNet don't really know about that forum and are only reading and going to the Medical Questions forum.

I would also add that I believe the majority of new folks coming here are very excited to find out that there is this forum to help them find a doctor that posters here have experience with. Experience is one of the greatest teacher that there is or can be.

But, more bad news, there aren't that many down in your area.

This is a fact for we have posters coming here from all over Florida and facts are facts!!! Believe me, with the thousands of posters that have come here, we would surely know if there were more of them in your area. Why? This is the largest support group for Lyme Disease on the entire web. That is a fact, and once again, facts are facts.

But it's worth traveling to get treated properly for this disease.

This is another fact. Although there are now more actual LLMD than there were last year, there are still only a couple of handfuls of them here in the US...facts are facts.

Treating Lyme ineffectively can just make the disease more resistant to treatment.

Can someone find that abstract for me...I believe that I've read more than one on this subject. Plus, we do know of the experiences of all those that come here thinking that they were treated enough in the past only to be having the same symptoms all over again.

Were they re-infected, who knows? But, we do know many were not re-infected, they were just under treated when they first got infected, thus, them coming here to learn how to get rid of it correctly this time.

Sorry I can't give you any good news. But don't wait. Find a good Lyme doctor.

Why would this statement bother you? I don't understand. We see it over and over, LD patients trying to get the proper treatment from there PCPs and end the end after spending way too much money and way too much time find themselves just as sick if not sicker than if they had found a good Lyme doctor in the first place.

We speak from experience, me included. And, IMO, I believe by my not finding a real LLMD and doing what my beloved PCP had me do, I was backing up and have now gotten worse because of it. I wasted much moola and wound up having to see an LLMD anyway, 9 months later.

Lyme standards????What are the Lyme standards....it seems to me that different docs have different standards...! Treating Lyme ineffectively...????

I think I answered that above. We all know that every one is treated different, even by the same LLMD. Example, my daughter and her two children and I are all on different abx. We see the same LLMD.

My hope is that you will not have a better understanding of not only LD, but, this forum as well. We really are here to help, really we are!!!

Welcome back, and hope you can stay around a while.

We do sincerely hope you will get the treatment you need....and YES, it IS very confusing!

-------------------

PS to all......please break up lengthy paragraphs so all Lymies are able to read what's written. THANKS!

Glad you decided to stick around :-). From what you describe I'm hearing that you are very overwhelmed by this disease and from trying to get treatment information.

You did a good thing posting your original feelings instead of leaving upset and not coming back . . . now you can move forward and know you're amongst friends.

Good luck.

You have been on my mind since yesterday when I first read your post. I wanted to reply, but couldn't think of exactly how to put it.

I stil don't know just the right thing to say now---- only that I hope you will try to be gentle with yourself at this horrific time in your young life.

Give yourself a break.

Just receiving a diagnosis of Lyme Disease is like taking an emotional pounding. It takes a while for it to sink in.

This is a major event in your life & we all want you to get well so it can be a past event.

For many of us here, Lyme has been kind a "do-it-yourself" disease.

Now when I talk to someone about finding a physician for a diagnosis; then finding the

perfect lab; then finding the best treatment--------I seem to get caught up thinking that maybe I can save this person from my chronic state.

Most of us have only one, maybe a second chance to help someone get help. I do come across as stern & lecturing to first-time posters & I just hate that.

But if I was talking to my family, I would say the same things because I know they will be in trouble if they don't get help.

I'm thrilled you are getting help. We all want you to get well as fast as possible.

This board is merely a sounding board. For me, it's like going to school. I learn something new & wonderful everyday.

Now I'm rambling, but I just want you to know we're here for you.

There's so much erroneous information about Lyme that we want to give folks the facts & then they have to evaluate their own situation.

Do what's best for you. You know your body & situation better than anybody.