Length of treatment of Lyme

 

I just dont understand from a medical and biological standpoint.....

If you have late Lyme 2 months of oral or maybe at worst IV anitobiotics really should clear you up.

I think after that point, if your not better, maybe its just damage from the Lyme.

Whats your opinion on doxycycline  VS  minocycline

 

Has anyone of this fourm actually healed themselfs from late Lyme?

Because if not, something is def. wrong, there had to be a bunch of people who responded to treatment.

If not, then why even take the antiobiotics.

And 31 and 34 ARE NOT expressed in Humans.

31 was used for the vaccine, because it kills the bacteria in a tick. Once the bacteria enters warm blood it does not produce 31 anymore.

Also you have to understand lab testing.

Its like working in a photo shop.

If you let it sit for along time, its going to looks +.

The postive control may just be too weak.

And 1/2 the population of the US has a + 41.

A lot of questions, but since you're asking about opinion, I'll give mine to you.

If you go on the lupus forum there are people left and right who will tell you that you can have lupus WITHOUT a positive ANA. If you go on the MS forum there are people who will say you can have MS with no lesions on the MRI. If you go on the anxiety forum, they will say it is all anxiety. And there are people on this forum who say you can have lyme and test negative for it (even via Igenex).

The lupus people are adamant that your symptoms are lupus...the MS people that it is MS etc etc. despite negative testing. I think the old hammer and nail theory comes to mind. We are all hammers and when a little nail comes along we try to claim it.

I remember sitting at the LLMD office praying that it was lyme. If not, I thought, I probably have one of the other two disease mentioned. When he told me it was lyme...I was so relieved. At least there is a cure I thought. Then I entered the lyme forum world and realized maybe I was wrong to "wish" I had this.

It is likely that most people develop some sort of autoimmune response from fighting off an untreated infection for so long. The root cause is lyme or some other bacteria/virus, but the end result is a body at war with itself.

I think people are attracted to the forum world because they are struggling to heal. Therefore I don't think that taking a poll here would accurately show how many people recover from late lyme. I do know of a lady who recovered completely after 2 years of treatment. This is, of course, conjecture. I know there are several past members here who no longer post because they are enjoying their "post-lyme" lives.


I think there could be books written addressing each of your questions.

I believe that everyone is different, never said they were not. Whoever told me to grow up, needs to grow up. None of my statments are reckless. If you dont like them dont comment on them, unless you have something to say on the informaton in the post.

6-8 weeks is an AVERAGE treatment time. If you want referecnces on this email me I will provide. There was a study done showing that after that there was no more benefit from anitbiotics. It makes sense too, as a bunch of people on here are still sick after taking them for years.. This is a good point. Thats why I said has anyone on here actually been cured. Read that again, see what I mean. If your still sick after taking years of anti's and no one is getting better than why take. Anyways, thats not the whole point. The point is that a good study was done and it showed no benefit after this much time. This may not apply to all cases. Email me for the study.

You are being treated it looks like a docotor who is not a LYME specialist. If this is true and you tested + for Lyme on the CDC test, then I agree with the treatment.

I may act cocky, but its for a reason. You guys fighting with me are helping ME see the other side, so I can make my own opinon. So dont take it like that...... But please bring on the arguments..

The CDC has tested for band 41 in many normal people without symptons or Lyme. This was done on 1000's of people of years. More than half were + for 41. I can give you the number of the person who ran this test. 41 has nothing to due with Lyme in detail. It just helps move bacteria through the flow.

As far as the "sitting thing" its hard to explain. If you saw a lab slide in person you would see what I mean. It has nothing to do with time, thats my fault for making it look that way.

What I am trying to say is, that if a lab has too weak of a positve control, the whole would would be + for many bands.

If you send your blood to the CDC and another sample to Igenex and another to say Igenex or another lab, I wouldnt doubt if they come back different. This all has to do with the + control. The CDC has way way more experince than any LAB in creating a + control. You cant argue that.

Whoever said the CDC's tests were based in the 70's this is complete wrong. There last study was in 2006.

I will quote an article from the CDC........

"Misconception 5: Studies of the performance of serologic tests use circular
reasoning
This concern stems from the fact that the clinical signs and symptoms of
Lyme disease after the first weeks of infection are not unique to this illness.
Clinical findings are not specific enough to permit a confident diagnosis without
laboratory testing. These considerations raise the important question of how to
properly select serum samples for studying the performance of serologic tests.
To avoid circular reasoning, a previous positive serologic result should not be the
basis for inclusion of a specimen in such a study. However, independent
assessment of infection status, for example by bacteriologic culture, is routinely
successful only in early disease [18] and is generally performed only in research
settings. This problem is well-recognized by investigators.
To approach this problem, we look to the natural history of untreated Lyme
disease. Patients with late disease frequently have a documented history of
earlier signs and symptoms of Lyme disease that support the clinical diagnosis.
12
For selection of “gold standard” specimens for assessment of serologic test
performance in later Lyme disease, serum from patients with antecedent clinical
findings compatible with earlier Lyme disease are often used (Slide 8).
Supplementary research tests such as PCR add additional confidence to the
classification of some specimens.
Patients with early neurologic Lyme disease commonly have a history of
recent EM. Lyme facial paralysis, for example, was associated with EM in 72-
87% of patients, depending upon the study [28]. Patients with carditis, an
uncommon presentation of Lyme disease which occurs in the early weeks of
infection and manifests primarily as atrioventricular block, also typically have
either previous or concurrent EM (>80%) or sometimes early neurologic Lyme
disease . Patients with late neurologic Lyme disease, a rare condition,
generally have a history of other clinical manifestations of Lyme disease such as
EM or Lyme arthritis. In our 2003 report in which 100% of 11 late neurologic
Lyme disease patients were seropositive, all patients had antecedent other
clinical manifestations of Lyme disease that were the basis for including the
serum samples in the study [10]."


I Bet there are allot of people out there who have Lyme with - tests. I agree !!!!

I like this forum. However I dont know why you people wont question things. If you did it may take years but it would get people going... Eventually the CDC would have too look into better testing and treatment and people like you and me would feel better. They are not going to do anything until then, so I am going to fight it all I can. If you dont want to thats fine.

Thats why I question Igenex. The botttom line is if there tests are so good and state of the art, then prove it.

Pay another Lab to vaildate the results. Its that simple. If I owned a testing company, I would do it, to prove my theroy and testing. You think they would want to!!!!!!

And if its right then good!! Then the CDC would have some answering to do, and Lyme would then be heavily studied. All these Lyme doctors are basing allot of there knowledge on Labs like this.

Like I said. Take 5 samples of your own blood from the same blood draw, send it to a Lyme lab with different names on the tests from differnt places, and see if they come back the same results. If they dont we have a problem, no argument there........

I am talking about ALL Lyme labs not just certain ones.

You know how allot of Lyme doctors dont like to prescribe IV antibiotics. Well I read a court case about a doctor who got shut down because they were receving funds from these health care companies.

The CDC does even say in bad cases IV antiobiotics can be used. But there have been stuides showing that a say 6 week course of oral is just as good as a 4 week IV.

I am not on anyones side here. All I know is besides Lyme the CDC DOES have many many good tests they have developed. Yes some were bad and some had to be redone, but look at how many good ones they have.

There experierice is superior to any other test LAB. They might not know everything aboout Lyme. BUT all the other stuff about say 31 34, and just Lyme in general that the CDC does nto approve is in reailty coming from other Labs.

Its not like Lyme doctors just make stuff up or make reckless theroies. They are good people! but allot of there stuff is based on Lab results not from the CDC.

Again, my point is why cant one of these Lyme Labs prove it. Call one and ask about it, and push for an answer, I bet they will hang up on you, or give you a nonsense answer.

There is not one good reason why they cant validate there results.

Look, I am just trying to help here. If you found out your results were valid you would prob be really happy right?

Well if they were not, then maybe its not Lyme, which is a good thing too.......

This is not questioning about Lyme as in the CDC right.

This is questing the quaility of lab protocols.

I hope one day they prove me wrong. I really do.

But its the world, you never know whats right, you are taking there word, and they are taking your money.

If I had an extra $10,000 I could do a really really good study on Lyme labs.

This is pocket change for them.

Again, I am just trying to help the Lyme cause here. I am on neither side 100%, but I do weight a little but more on one.

The CDC can back up there results a million times, call them..... Its time for everyone else to do there part.