One thing the news said about Lyme was that "if left untreated", there are various things that can go on to develop. Were you ever treated, I was never treated. My mom who had a bull's eye was never treated, so why the heck to so many argue the fact that it could be chronic Lyme?
Looking on the net about Bush, you see this statement also made and I believe that even the IDSA says that.
Seems so basic that even a first graders should understand that the majority of us were never treated! Then as the IDSA recognizes, it can become chronic. As my 5 year old grandaughter says, DUUUHH
Posted by Ruth Ruth (Member # 11059) on :
Guess it wouldn't be kind to bring up the parallels with untreated syphilis?
Posted by Aniek (Member # 5374) on :
IDSA does not deny that there is a chronic condition that can be caused if Lyme is not treated immediately.
But, IDSA denies that the chronic condition is a chronic infection. They call it "Post-Lyme Syndrome."
They claim it is continued symptoms that are a permanent result of having had Lyme disease.
Posted by valymemom (Member # 7076) on :
Mainstream medicine knows what happens as a result of untreated syphilis.
What is the result of untreated Bb?
Their answer is a post-lyme condition. What happens to the spirochete?????
I can't understand the science behind their thinking. How about a grant to do a study recruiting folks who remember getting a bull's eye but who never were treated for it! What if their medical histories were taken! Let's look for patterns.
More than appalling.....sounds secretly sinister.
Posted by Andie333 (Member # 7370) on :
I was treated. I went to the doctor's in 1996, just as soon as I saw the bullseye rash.
He gave me 15 days of abx, and the rash went away. I didn't think anything more about Lyme until 2005, when I was so sick I could barely walk or function.
So I was treated, but it sure wasn't long enough or strong enough.
Andie
Posted by Got Lyme? (Member # 11109) on :
I was treated too. I went to the doctor with a bullseye and I was put on 21 days of doxy in Oct of 2004. Never had any symptoms, only the bullseye. Three months later I thought I was going to die and I'm still fighting it now! Good thing I found a great LLMD! So, even though they mention "no treatment" remember that even with the "ISDA" treatment being used, in some cases it still is not enough!
Posted by hshbmom (Member # 9478) on :
I was treated immediately...with the standard dose of doxycycline 100 mg twice a day, but the physician only wrote the prescription for 10 days. The pharmacist tried to convince him to give at least 21 to 28 days, but the physician wouldn't change the order.
The physician said he would extend the treatment if my Lyme test came back positive.
I went to another physician the next week..to a dermatologist; he did a biopsy of the EM rash and gave me a prescription for doxycycline. The attitude implied was, "Take as much you need; I'll give you more when you need it."
I began taking the ILADS recommended dose in less than a week.
BUT, did it help? NO...I'm still having neurological and musculoskeletal symptoms that interfere with everyday life.
Early treatment did not kill all the bacteria, or address any coinfections.
ADDED: My diagnosis was "tick bite.rash"
It did not say a "tick bite rash", but was separated by a period.
This physician rolled his eyes and chided me for my concern about the possibility of Lyme disease.
So much for a physician diagnosed EM lesion. It was early, so my rash was only a 3 inch red round lesion....not a bulls-eye. This expanded to a 7 by 4 inch oval....the doctor didn't make a comment when he saw the photo of the expanded rash a month later. More eye rolling.
[ 09. August 2007, 02:02 PM: Message edited by: hshbmom ]
Posted by Beverly (Member # 1271) on :
My son was treated right away. I took him to our family doctor after he developed a red rash where he was bit. He was givin six weeks of amox and it wasn't enough, he was still very sick.
Posted by Jellybelly (Member # 7142) on :
Thankfully some of you were at least given a diagnosis of Lyme after your initial bite, and it is on record that there was an attempt to treat.
But, for people like me, my mom and I know countless others who were bit, and never gave it a thought. In my case Lyme wasn't even a word yet, let alone any form of treatment.
But, many of us were bit and many had the recognized rash. Even with that and it being known that if you are never treated this can turn into some very dangerous stuff, we have a bunch of ducks out there who are failing so miserably to see what could be such an obvious problem.
It just blows me away when I hear a duck say, no it's a negative western blot, even though you have a history, they conclude NO LYME! It says right on the test that a negative result does NOT RULE OUT LYME!
What is the problem here?
Posted by ks mom (Member # 11626) on :
Nope, no real treatment.
Son was about a year and a half...we lived in the middle of the woods outside Chapel Hill.
The ticks were VERY BAD and son had a bunch of bites and more than one rash.
HMO PCP would not treat him even when one bite got infected and son had a high temp.
Took son to the ER and ER doc filed a complaint against our doc.
Even called him up and demanded that he treat my son for suspected Lyme.
Duck gave him the purple stuff and son couldn't take it. Yelled at me for taking him to ER.
One medical thing after another and duck refused to treat.
We moved thinking that would help, but we got sicker.
from everything I have read here...son has more neuro symptoms now and is more than likely late stage.
and from what I know now....if original duck was standing in front of me right now, he wouldn't be standing.
Something has to change with insurance companies and docs refusing to treat when they hear you have Lyme.
ks mom
Posted by painted turtle (Member # 7801) on :
I was never treated either.
In fact all my life I've been an anti
antibiotic type of person so I never even accidently got treated when taking antibiotics for something else.
Seems pretty clear how that can be a chronic
Lyme.
DUH!!!
Posted by Lymetoo (Member # 743) on :
Nope, not me. I believe I contracted Lyme when I was about 8 yrs old. That was 20 years before Lyme was identified as an illness from ticks.
Amazing that my "post lyme syndrome" is SOOOO much better now that I've been treated! It took 4 yrs of abx to get where I am today.
Posted by Kayda (Member # 10565) on :
Have any of you sent your stories over Atty. General Blumenthal in CT? He is looking for stories like this.
When is the deadline?
Kayda
Posted by david1097 (Member # 3662) on :
Some the senior IDSA members believe that Lyme, even in late stage is easily treated with antibiotics and refuse to acknowedge that lyme can become refractory to antibiotic treatment (refractory means "insulated" from treatment).
I had a long (and cordial) talk with a very senior IDSA guy on this. Interestingly he did admit that some well respected Dr's beleive that refractory lyme is possible. He chose to stick with the easy treatment option... for all bacterial infections. The lne is that 4 weeks of IV antibiotics shold clear up almost any infection.
Of course we all know this is not true. There are may people that require extended antiiotics for encapsulated infections in various places on the body, for chronic lung infection, for myco bacterial infections etc.etc. When I asked him about this rather obvious fact he simply stated that those are special cases that are handled on a case by case basis??????
In any case it was clear that he did not want anything to do with Lyme and if he was forced into it with symptoms and positive tests then the best you wouldget would be the 4 week treatment, After that you are discharged and set out on your own.
The invention of post lyme syndrome helps in the easy discharge process and recommendation of not testing unless deminstrated risk helps eliminate the need to deal with Lyme.
On the post lyme thing, in many ways, we are our own worse enemy's. Post infection problems are a fact of this disease and there is a point where treatment of the symptom rather than treatment of the disease must start. The problem is to figure out at which point this transition should occur. IDSA says it should be earlier (and note that they specifically say NOT to use steriod anti-infalmitories... a course that would most likey re-activate a refractory infection). Omn the other hand ILADS says this transition point should be later. Some patients, even after they have reached the ILADS transition points push and push for more lyme treatment.. This causes a perception problem as it only takes a few difficult people to result in a negative label for all.
As far as disease that has not been treated. There have been many instances of sub-symtomatic lyme disease. These people seem to live with an infection but display no symtoms. This can be for various reasons. It is also acknowledged as a posibility interpreting Lyme Western blots that show lyme antibodoes but no disease.(ILADS) In this regard even highly positive WB's are NOT accepted as benig sufficient to start treatment without symptoms even undwer ILADS guidelines.
If this is the case then why do the treatment on the rash alone?
This is simply becuase it is so much easier to treat the infection in the early stages, due to the motility of the bacteria and that fact that it does not have sufficient time to widely diseminate, some of which is to areas that limit the ability of antibiotics to reach it... or at least the theory goes. There is also far less bacterial load to deal with so you in tery will have less survivors laft after treatment.
What about prior rash, no early treatment and now symptoms?
In this case, welcome to the late stage lyme club, but before you accept membership make sure that you don't have something else. Lyme has been called by some, the great imitator.... Ok but imitating what? There are many other diseases that like can look like.. There are also diseases that can LOOK LIKE LYME. As an example there are a numebr of slow growing bacterial diseases that have many if not all the same signs and symtoms as lyme. These are rare diseases but by all accounts, Lyme is still considered as a rare disease, at least in the world as a whole ( it certainly is not rare in the north east)Being rare on a world wide basis, there is some due diligence that must be employed to make sure the symptoms are not due to some other rare or less rare condition. In this regard even on lymenet, there have been people that thought they had lyme, managed to get treated for lyme (after moving from Dr to Dr), did not get better (or got worse) and then later found that they did NOT have lyme but rather some other rare affliction (treatable in most cases). If you have gone to any the ILADS conferences there is always several presentations on this topic and it is stressed that a comprehensive workup and history must be taken to rule out things Other than Lyme... EVEN WITH POSITIVE WB RESULTS.
A final note on the label chronic....
IDSA goes out of the way NOT to say Chronic. They will say "late stage" but not the word chronic. Chronic, by defination, means persistent or always there. This implies it is refractory disease that is resitant to treatment. Late stage by their published analysis means difficult to treat but not refractory... the IV drug route is supposed to be the cure all.
The interesting part is that IDSA could be right... Lyme is curable with 4 weeks of IV. It might very well be that the cases that are not "curable", ie may take years of antibiotic use are the result of co-infection with some known or unknown organism. As time goes on this is looking more and more likely. the problem is to figure out what these things are and how to treat them.
A good example of a surprise co-infection is mycoplasma fermentans.... look it up and you will see a lot of stuff on gulf war syndrome.. For some reasn a lot of people with lyme also have this??? where did it come from, what is interaction with lyme, and how to treat it?... all unknowns. What about the stuff that can't be tested for right now anf how about viruses, or "slow" viruses... a concept that has a long history but not discussed much.
What burns my butt is that IDSA in no way acknowledges the prevelance of co-infection with Lyme, nor accepts that an interaction betweeb lyme and co-infection is possible...but this is typical. It took over 20 years of fighting to H.pylori to be accepted as even possible... Now everbody knows about it and it is the first thing that is looked at in cases of ulcer.... How many people have died as a result of this delay???
[ 12. August 2007, 10:25 AM: Message edited by: david1097 ]
Posted by Robin123 (Member # 9197) on :
I know someone here who was treated right away with 100mg doxy -- it wasn't enough -- the dose was upped to 200mg, then 400mg, still not working, has just gone on IV med.
Question: does "treated successfully right away" mean only a possible successful month of IV treatment and not oral or IM shots?
Posted by hardynaka (Member # 8099) on :
I was treated right after EM rash in 2005, but only for 2 weeks of doxy, developed symptoms few months later. During rash, no symptom except rash itself.
I got babesia, and doxy certainly didn't catch it. Babesia caused my worst symptoms. I don't think a month, two, or more of doxy would have made me symptom free as it doesn't get babesia. Even in higher doses (I took low doses).
My daughter was on amoxy (too small for doxy) twice last year after tick bites, if I wanted I could get more abx for her than what she got - 5 weeks.
She fell sick anyway, she got bartonella, rikketsia, ehrlichia, none were caught by amoxy. She started amoxy the same day I found the tick still attached.
So, no, the preventive abx treatments for her were not a solution for the many coinfections she caught. She was sicker day after day.
I got again doxy this year, this time for 3 weeks after re-infection. I could get as much as I wanted if I ask my nice doctor.
I got again babesia, and again, I was VERY symptomatic of it fast. After 2 weeks of doxy, I dropped it as I continued having strong symptoms and went into herbs only and shaped protocol to get babesia too. I'm still fighting babs (for 3 months now).
No, I now start to be convinced 'if treated early' means nothing if we don't catch co-infections too. I wouldn't feel safe even with 3-4 months of doxy-only immediately after tick bite.
"If left untreated" looks something from long ago, when co-infections were not known... But that's what we hear all the time, as if the CD-player got broken and they get repeating that again and again.
Posted by Lymetoo (Member # 743) on :
Keebler said:
"And to add to the stupidity, while Bush did not need a test if he had the rash, no mention if he later got a test for coinfections. Everyone should know that coinfections should be addressed."
I posted this on another thread:
****"Scott M. Stanzel, a White House spokesman, likened Mr. Bush's episodes of imbalance to the feeling that can occur in someone who has just gotten off a boat."****
Loss of weight.
Sounds like babesia is a possibility. That is exactly what babs did to me.
Posted by Jellybelly (Member # 7142) on :
Tutu, I was just telling someone the other day, that I am not much of a drinker because I don't really appreciate the feeling of a buzz. Why would I, I feel half loaded as a normal part of life when I am sick already, why would I want to do that to myself intentionally.
The weight loss thing too. I looked like I had anorexia, and there were people who in all seriousness wanted to know if I had it. My mom even asked me once, "Honey, what do you see when you look in te mirror?" I reassured her that I saw a deathly skinny person. Posted by marie (Member # 3980) on :
I was treated with 21 days of Doxy after I had the bull's-eye rash in 1996. I had a few strange symptoms over several months after that. Then a few months later, I was very sick and have not been well since.
Posted by david1097 (Member # 3662) on :
There appears to be a number of I was treated early with XXX of YYY. I think it is important to docuement the number of failures and the duration before relapse. Any idea how this can be recorded here. I think this is important enough to build into the website somehow. This type of information is critical if the IDSA folks are to be refuted. IDSA never follows up on lyme patients, they just treat and release so its obvious why they say what they say. It slike treating a cancer patient with no follow up... 100% success... always.
The only concern I have is accuracy. Info from a friend of a friend would not count.
Any ideas's/comments
Posted by lou4656 (Member # 10300) on :
EM rash (perfect expanding bullseye) in 2000. My PCP noted "did not see a tick." The rash was on the underside of my upper arm, and I noticed it when blowdrying my hair one day. Elisa and Western Blot were both negative, therefore "no lyme, no treatment necessary."
My LLMD (in 2006) called the PCP incompetent. That a much nicer name than what I call him.
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