Diagnosed with Lyme... and freaking out...!

[tjf117]

Got the call today from my doctor's office... Basically told me "Yep, you came back positive for Lyme, so finish all your meds."

Didn't feel a bite or anything this past week.. noticed a Bulls-eye rash for about 2 days, then it started to itch and i didnt think anything of it till a friend mentioned it to me.. It's itchy, bulls-eye apperance, and raised and warm to the touch ( usually infection if warm)  I've been reading all over the Internet how to cope with this and gain more knowlege but it is honestly freaking me the hell out. I was prescribed 100mg Doxycycline twice a day, for 21 days.. have taken 4 doses so far..

I've read people dont get better even after anti biotic help.. Thankfully i did notice the rash and questioned it and got my meds within 3 days of the bite. im 22 years old and in Complete health.. it is really freaking me out reading about sooo many things that could happen in the future and other possible infections.  Any one have some guideline or great sites to point me in my direction?

[navyguitar]

Please come back and give us an update.

[tjf117]

Thanks for the help and appreciate everybody's concerns and directions on where i should go to next..  I figure just after my 21 days of Doxycycline is over, i can call my doctor and figure out what is next in his opinion. My rash has just about disappeared on my shoulder where i was bitten after about 5 days of antibiotics..

[navyguitar]

That book gives anecdotal evidence based on testimonials. I've said this before. Where is the scientific studies behind ILADS? There is absolutely no data backing their position. It is just TRUE accounts and people stating that antibiotics helped. Well, there have been countless studies on this by independent review boards. Look at the link I provided where Blumenthal help create an independent review committee to check the IDSA guidelines. He had a major hand in selecting the members of this committee. They found absolutely nothing wrong with the IDSA. What more do Lyme people want? Why doesn't ILADS run an independent review? The answer: The would have to admit they were incorrect in their position on treatment. Stop saying I'm wrong and provide at least ONE single piece of scientific evidence. I know you can't because it does not exist.

[JackieCalifornia]

Some states have freedom of conscience laws which permit docs to treat as they see fit.  Other states, not so much.

The two links in the preceding post are heavily biased to the IDSA point of view, and therein lies the problem.  The IDSA policy on Lyme as being 'hard to get and easy to cure' is outdated, but the originators of that conclusion are unwilling to revisit the issue because their entire careers are based on their initial work done decades ago.  Yes, everyone makes mistakes -- the IDSA's Drs Wormser and Steere included -- but they aren't ready to fess up.

This puts Lyme patients in a bad position.  There is a great book that explains how politics and ambition poisoned the medical research into Lyme and its diagnosis and treatment:  Pamela Weintraub's 'Cure Unknown', now in paperback.  It weaves true accounts of several Lyme sufferers who are treated and cured with an explanation of the politics behind the refusal of the IDSA to take new developments into account.  The IDSA's most potent weapon against LLMDs and their patients is ridicule.  Don't buy into it.  There is none so blind as he who cannot see beyond orthodoxy when presented with evidence to the contrary.

There are many many people (including me) who have been successfully treated by non-IDSA approaches (usually meaning antibiotics for several months).  Lyme has characteristics different from most bacteria, which means the standard 'two weeks of meds and you're cured' approach doesn't work except if treatment begins almost immediately after infection, and many people never see a tick or know they were bitten or can even get in to see a doc that fast.

In your situation, I would continue to explore the possibility of Lyme and its co-infections with an LLMD, because it is wonderful to feel well again.  Take care, keep in touch --

[navyguitar]

I know a lot of LLMD's have to keep their treatments secret. They will get sanctioned if their governing board finds out. I'm glad you found a good doctor. In a post above, I referenced the state attorney general of Connecticut pressuring the IDSA to have an independent study performed to see if its guidelines are correct.  You may have remembered this in the movie I mentioned. Well, he got his wish and the IDSA was exonerated. He started back tracking and kept the study relatively quite. If it would have went in his favor, he would have been on every news station. Everyone makes mistakes. It is said that Lyme activists were feeding him with false information, so he did not do it intentionally. It costs millions of dollars for the study and falsely accused board members of wrong doing. He should give a public apology to the IDSA board members. You can read more about it here:

www(dot)policymed.com/2010/05/richard-blumenthals-lyme-deception.html

www(dot)medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/19699

[ree427]

No, I wasn't turned down because of finances. The doctor is looking to cut back his practice which is the main reason. He is very particular when it has to do with the clients he accepts because he is looking to cut back. The other reason had to do with the testing he performs. One test result was positive and one was negative and he decided to go with the negative test despite all my symptoms and other diagnostic tests which pointed towards Lyme. I didn't agree with this decision. I believe doctors should base more emphasis on symptoms and not so much on tests. I just believe he wasn't the right doctor for me. I do have a good doctor now. Her heart is into it because two of her children have chronic Lyme.

[navyguitar]

Ree

I think you found a good doctor. Did you get turned down by LLMD's based on financial need? I am just curious. I'm glad to see that you have an open mind and do not attack me. If you realize what my actual intent is, you will see that I wish no ill will on anyone. I am just providing information that is backed by science.

If you look at some LLMD's, you will find that they have sanctions and/or fraudulent charges against them. Did you watch the movie "Under Our Skin," Dr. Jemsek was cast in a good light in that movie. If you do research on him, you will find out the incomprehensible actions he has taken. He has had numerous lawsuits filed against him, as well as having his license suspended. The failed to depict the stories of the 10 people that testified before the board. He no longer accepts insurance and has moved to another state to continue his practices.

Moreover, the movie shows how the state attorney of Connecticut pressured the IDSA to conduct a study based on an unwarranted antitrust investigation. He stated that there were conflicts of interest among the board members pertaining to Lyme disease and the IDSA. This made big news and people on Lyme boards were excited that he was an advocate. Well, the investigation revealed that the IDSA had the proper guidlines. What did Lyme board people do? Ignore this information. That is what they do. If a test comes back negative, they keep trying until someone says the have Lyme. That is why there is no scientific data backing these outlandish Lyme conspiracies.

[ree427]

Correction...I am not sure who the LLMDS are making a lot of money off of sick patients the website you posted is referring to. I haven't met any of these LLMDs, but possibly some exist. I like to think that most are in it to truely help people.

[ree427]

I fully respect your opinions, but I am not sure who the LLMDs are making a lot of money off of sick patients you are referring to. I know from past experience, that I have actually been turned down for treatment by a LLMD for various reasons. I would just hate if someone would read this thread and perceive that all LLMDs are bad because that is a false statement. I know you did not directly say all LLMDs are bad, but from your statements one could interpret this as so and it would scare them to not seek an opinion from a LLMD. Also good docs make the diagnosis of Lyme based on clinical symptoms and will tell you that no test is reliable. My doc didn't ask me to spend hundreds of dollars to test at Igenex because you can have a negative result and still be ill from Lyme. If you are ill with symptoms, you need treatment and that is the bottomline.

[navyguitar]

The second site tells the truth about Lyme. It has many good resources.

TJF

You should think logically. A lot of the Lyme information on the web isn't backed by science. It is just pure testimonials. There have been countless studies done on Lyme. For some reason, a lot of people on the chat rooms fail to recognize them and just listen to anecdotal information. Here is a good read from Forbes:

www.aldf(dot)com/pdf/LymeInc.pdf


It tells you the truth about this multi-billion dollar problem. You will read how LLMD's make a lot of money off of sick patients on a cash basis. Some of these patients actually die from the treatment. A lot of the diagnosis are made by phone.

You will likely be told to spend hundreds of dollars to get tested at Igenex. This will likely lead to a false positive. Even if it comes back negative, a LLMD will tell you that it reads positive. The chief executive officer even made the following comment.

Patients, because of the Internet, have become my best salesmen," Harris says

[navyguitar]

The first site I posted is based on scientific evidence. A lot of information on the net is based on testimonials and anecdotal evidence. Good luck with your research.

[navyguitar]

I have a couple that I would suggest:

www(dot)aldf.com/about.shtml

www(dot)quackwatch(dot)org/01QuackeryRelatedTopics/lyme.html

[ree427]

Oops, won't let me use dots. Allow me to try the website again, but this time I will spell everything out...It's www(dot)lymenet(dot)org
Also try-    www(dot)lymediseaseassociation(dot)org
                www(dot)ILADS(dot)org
and google Burrascano treatment guidelines

If someone has any others to suggest, please add.

[ree427]

If your looking for a site, try ***************. I like this site a lot and they can also answer questions. I am sure there are many more sites, just have to google some more.

[ree427]

Be careful of information you read on the internet and try not to get too worried. You are fortunate to have caught it in time.  At the end of the 21 days of antibiotic treatment you want to be sure the infection is gone because 21 days may not be long enough. Also you want to be sure you do not have any co-infections which may require different antibiotics. Not taking antibiotics long enough, not catching it in time, and not treating co-infections are reasons why treatment fails and the infection persists. Present your concerns to your doctor. You are smart to get yourself educated. I am sure others here can help put you in the right direction.

[navyguitar]

There is a lot of information out there with no scientific merit. You will need to find information that is not biased.