Lyme Disease Community
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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What next?

I was bit by a tick about 12 years ago, got the rash, got sick. About six months later I was tested with the Elisa test which came back positive for lyme's. The neurologist then gave me the Western Blot which was negative, so she diagnosed me with fibromyalgia and chronic fatigue. Basically the diagnosis they give when they don't have a clue as to what is really happening. The fatigue now is incredible. I have terrible sleeping problems and my back hurts so bad I have to lay down almost all day everyday. I also have Manic Depression and other issues, so the totality of my problems cause me to file, and receive, Disability. In 24 years of work prior to being bit I missed 7 days total for illness and injury. I have worked through virtually everything, yet this simply floored me. I did a lot of heavy lifting in my job and worked up to 70 hours a week, so I had a very strong back and I am sure some of the damage is from my job. However, I have too many Lyme's symptoms to ignore. So, what are my choices to finally get a diagnosis? I know from exhaustive research that the Lyme's tests in this country are poor at best. I also know that many doctors are now saying Lyme's is the new great epidemic, affecting every state and every country on the planet. Plus it's a spirochete, the same thing Syphilis is, so it's a matter of time before it becomes sexually transmittable. These doctors call it the next AIDS. They also say with long term Lyme's it takes many months to years of I.V. antibiotics to completely destroy the disease. The C.D.C. says two months is more than adequate and goes after the doctors who disagree with them. These doctors are the actual ones curing Lyme's in patients. Sometimes I think I need to move to another country and try their health system. I have heard Canada has a very good test for Lyme's. Any advice???
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So sorry to hear you're struggling with this. It is unfortunate that your doc didn't give you antibiotics, as an erythema migrans rash is always definitive for Lyme Disease. And a long term infection can indeed be debilitating.

At this point, you'll need to go see a LLMD.  You are correct in what you read about the conflict and how even the CDC is stuck in a rigid perspective of Lyme that leaves people sick, undiagnosed, untreated, or under treated.

Unfortunately, Canada is even worse than the U.S. They don't have private health care there, so doctors are required to follow the national health service, which follows the IDSA and CDC in saying that Lyme is rare, hard to get, always shows positive on the CDC testing protocol, and is always cured with a few weeks of antibiotics.  You can check out the canlyme website for more info.  There are a lot of angry Lyme patients there lobbying the government for the care they need. From what I've read, Canadians have to come to the US for proper care.

With your 12 years of illness, yes, you will need long term antibiotics. People usually only need long term IV meds if they have significant neurological symptoms. Only a LLMD, a Lyme Literate Medical Doctor, will diagnose or treat outside the strict IDSA guidelines.  They nearly all use IGeneX for testing as they use more advanced testing methods. IGeneX also uses a broader interpretation of the Western Blot which finds more cases than the CDC's narrow criteria.

The CDC interpretation of the Western Blot was done to produce very few false positives. It was for surveillance purposes and so they weren't concerned with false negatives. They used New England early stage Lyme patients, and patient who tested positive 1 or more out of 4 times in the study were considered positive.

If one used REAL statistical methods, the actual accuracy of the CDC's protocol is in the 50-60% range.  How the CDC can ignore Lyme specific antibodies, I do not know.

Unfortunately, Canada uses the same test that most labs use here. They've never validated the CDC's protocol in their own country that I know of, so nobody really knows how accurate it is there with whatever genetic strains they have. But if it missed 40-50% of cases here, then surely it's that bad or worse in Canada.

I don't know where you are, but I encourage you to find a good LLMD for a consultation.  A LLMD is your only hope for getting the treatment you need.  You can recover, but it will likely take more than a year of antibiotics given how long you've been sick.  You can get suggested names from ILADS or a state or regional Lyme Disease Association.  You can also get good feedback from local Lyme support groups. They might know of docs in the area who take insurance who are willing to diagnose it and at least start treatment.

Keep us posted!  I encourage you to do whatever it takes to get treatment so you can start getting your life back.
13 Comments Post a Comment
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Avatar_f_tn
So sorry to hear you're struggling with this. It is unfortunate that your doc didn't give you antibiotics, as an erythema migrans rash is always definitive for Lyme Disease. And a long term infection can indeed be debilitating.

At this point, you'll need to go see a LLMD.  You are correct in what you read about the conflict and how even the CDC is stuck in a rigid perspective of Lyme that leaves people sick, undiagnosed, untreated, or under treated.

Unfortunately, Canada is even worse than the U.S. They don't have private health care there, so doctors are required to follow the national health service, which follows the IDSA and CDC in saying that Lyme is rare, hard to get, always shows positive on the CDC testing protocol, and is always cured with a few weeks of antibiotics.  You can check out the canlyme website for more info.  There are a lot of angry Lyme patients there lobbying the government for the care they need. From what I've read, Canadians have to come to the US for proper care.

With your 12 years of illness, yes, you will need long term antibiotics. People usually only need long term IV meds if they have significant neurological symptoms. Only a LLMD, a Lyme Literate Medical Doctor, will diagnose or treat outside the strict IDSA guidelines.  They nearly all use IGeneX for testing as they use more advanced testing methods. IGeneX also uses a broader interpretation of the Western Blot which finds more cases than the CDC's narrow criteria.

The CDC interpretation of the Western Blot was done to produce very few false positives. It was for surveillance purposes and so they weren't concerned with false negatives. They used New England early stage Lyme patients, and patient who tested positive 1 or more out of 4 times in the study were considered positive.

If one used REAL statistical methods, the actual accuracy of the CDC's protocol is in the 50-60% range.  How the CDC can ignore Lyme specific antibodies, I do not know.

Unfortunately, Canada uses the same test that most labs use here. They've never validated the CDC's protocol in their own country that I know of, so nobody really knows how accurate it is there with whatever genetic strains they have. But if it missed 40-50% of cases here, then surely it's that bad or worse in Canada.

I don't know where you are, but I encourage you to find a good LLMD for a consultation.  A LLMD is your only hope for getting the treatment you need.  You can recover, but it will likely take more than a year of antibiotics given how long you've been sick.  You can get suggested names from ILADS or a state or regional Lyme Disease Association.  You can also get good feedback from local Lyme support groups. They might know of docs in the area who take insurance who are willing to diagnose it and at least start treatment.

Keep us posted!  I encourage you to do whatever it takes to get treatment so you can start getting your life back.
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Avatar_f_tn
Welcome to MedHelp Lyme --

Very sorry to hear all you have been through for so long.  And good for you for not giving up!

I see you're in Oregon -- I just did a search for

         --- oregon LLMD --

and got some very helpful links to groups and information.  Take a look, and they may be able to refer you or give you hints on how to find an LLMD.  Some LLMDs stay as anonymous as possible, to avoid problems with local medical boards, but I don't know the 'political' situation in Oregon.  btw, LLMD is not a title or degree -- it's patient slang for 'Lyme-literate MD', meaning a doc who 'gets' Lyme and its tricks.

Best wishes to you -- let us know how you do, and if we can help you sort through it all.

An issue with going to Canada:  unless you're legally entitled to live there, I don't know that they would let you stay or treat you as they would a Canadian.  I know an American who married a Canadian, and there were a lot of hoops to jump through with Canadian immigration ... and my friend and her sweetie were legally married.  Not like moving from one U.S. state to another.
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Avatar_f_tn
"Oregon ranks as one of the worst states in the nation to get help for Lyme disease."

http://lyme.kaiserpapers.org/oregon.html

From a long-time patient advocate comes this:

"As some know, though, there is no LLMD in Oregon. Not allowed. Oregon is one of the most hostile states for anyone with Lyme who needs any kind of MD for any reason.

Thankfully, though, there are a few ILADS-educated LL NDs (naturopathic doctors)."
***************************
In Oregon an ND is legally an "M.D."
If your insurance will pay for treatment by an ND (in Oregon) then you'll have some success. Check your insurance policy.

My ins. won't---- long story. But I could still pay out of pocket (if I could afford it).
Washington is not much, if any, better.
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Avatar_f_tn
Regardless, I still suggest you search for

    --- oregon LLMD --

and see what links you get.  I found more than a few.
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... and PS, you can also email to

         contact   [at]   ILADS   [dot]   org

and tell them where you are and how far you can travel.

ILADS is the main voluntary group for docs who think progressive thoughts about Lyme and its treatment.  They will email you back with names, if they have any.  It's sometimes a good way to find an LLMD where there would otherwise appear to be none.
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Avatar_m_tn
Thank you so much for the information. You have told me more than I have learned in years of research on this subject. I have no doubt that I have Lyme's, since it hit me like a freight train shortly after noticing the rash. I just happened to be at a campsite days before noticing the bite, and I just happened to be petting a baby deer. I have a bad history with bug bites. I was nailed by a brown recluse and got blood poisoning in my right leg. Two years later I was bit 50 times by mosquitoes and had a severe allergic reaction to the bites. The doctor was amazed I was alive because of the severity of my reaction. He said I should have gone into anaphylactic shock. So, a tick bite would be the perfect trifecta for me!! Thanks again.
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Avatar_m_tn
I have noticed when I mention Lyme's to any of the doctors I have had in the last decade they quickly change the subject and just tell me I have fibromyalgia and chronic fatigue. I am thinking of going to OHSU, which is a teaching hospital, and see if they would use me as a test case. Since I am on Medicare I know my options will be limited. This disease has taken away my life completely. I used to be one of the most active men I have ever known, and now I am virtually bed ridden. It's so easy to just want to give up because I know it's a virtually impossible fight against a medical system that has no clue as to the extent of this disease. I watched a documentary, I believe it's called Under Our Skin, or something close to it. It was a revelation, and explained why the CDC only allows two months of antibiotics and why doctors are being crucified for treating longer than that. It's all about money. Several doctors who are on the medical board who act as advocates and watchdogs for the CDC just happen to be the only ones allowed to work with the spirochete responsible for Lymes. They don't want anyone cured because they want to find a cure themselves and make a lot of money. They should be brought up on charges and lose their licenses for failure of their Hippocratic Oath.
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I am sorry you are sick. It is hard to find mainstream doctors who believe in Lyme. When I first got really sick I was in Tx which is also famous for not having LLMD or believing in Lyme.

You also need to be careful of being misdiagnosed. I was told I had lupus and MS just to name a few. I was given steroids to take which is one of the worse things to take if you have Lyme.

So I agree, you need to find an LLMD, they go against what the CDC recommends and give you long term antibiotics and they use a lab called IgeneX where the testing gives you much better results. Lyme usually comes with co-infections, I had 2, and this can further complicate things. The LLMD will test for those also.

Just contact ILADS like was mentioned above and find the closest LLMD to you. It is worth the drive if there is not one near you.

Keep us posted.
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Avatar_f_tn
You said-

"It was a revelation, and explained why the CDC only allows two months of antibiotics and why doctors are being crucified for treating longer than that. It's all about money. Several doctors who are on the medical board who act as advocates and watchdogs for the CDC just happen to be the only ones allowed to work with the spirochete responsible for Lymes. They don't want anyone cured because they want to find a cure themselves and make a lot of money."

You've nailed it on the head! Good for you for understanding that---- 'follow the money'! ----although it's a bit more complicated than that.

They want to find a vaccine and patent it. OR a cure, maybe. Or control funding for studies.  Or............

Andy Wilson didn't put that segment in there just for fun. :) Not many people understand that segment is the most important part of the movie--------because seeing the plight of so many ill people is heart wrenching and the background is---- well, delegated to the background of their consciousness.

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About OHSU----- if you will read some of the links I put up earlier you'll see why that might be (will be?) a waste of your time. It's not just 'about Kaiser' but the medical board/system in OR.

You said:
"It's so easy to just want to give up because I know it's a virtually impossible fight against a medical system that has no clue as to the extent of this disease."

Those entities DO 'have a clue'. They're just choosing to deny it.

Do NOT give up. That's an order!! (grin). As others have said finding an ILADS trained doctor or an LLMD that follows the science not the parameters of the Infection Disease guidelines will be your ticket to some help.  

In OR there are ND doctors who will also treat with long term abx, but since you're on Medicare that presents a different can of worms.

I'll PM you and give you the name of at least one ND about an hour south of you that most people agree is pretty good here. BUT will Medicare pay for your long treatment? I don't know.

I can also give you the names of people to contact here in OR who might know someone closer to you. Be forewarned though---- after several years of contact with them, I've yet to hear of an MD in the 'strict' sense---- just NDs who are legally able to be called an MD but can and will treat long term. Back to whether Medicare will pay for it. I don't know.

I'll also give you the name of a doctor in WA that I wouldn't send my dog to----- he also calls himself an LLMD and belongs to ILADS. So it's not as simple as some people perceive. Having 'insider' knowledge is important also.

There's a member here lilmiss1999 who was asking the same questions you are. Perhaps she might have an idea---- but again, AFAIK, no answers.

I do know that not too far over the border into CA , in Humboldt County, there's help. But if you're too sick to travel......... ?? And that's a long way from you. :(
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Avatar_m_tn
Thanks so much for the advice, it means a lot to have people who know what they are talking about helping me on this. I have a new doctor and told him about my situation, about how I remember the bite and had tested positive on the Elisa. He even said it's likely that I have Lyme's and that he would probably just treat me for it even if the Western Blot was negative. Then I saw him a second time, and he changed his tune and said it's probably fibromyalgia and never mentioned Lymes. I believe he looked into what it took to cure it, saw the complexity of the situation, and decided to cower away like so many other doctors do. It would be nice to at least have a definative diagnosis even if I never did receive treatment. At least I would know what I was fighting!!! That's all I have ever wanted.
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Avatar_f_tn
A couple of things:

-- Call the doc's office who ran the test on you and request copies of your file ... specifically the test results.  By law, I believe he has to give them to you.  Then you will see for yourself what the results were and will have them to show a future doc.  Bear in mind tho that the tests are not very accurate, so don't let them be the last word in your search.

I would tend to agree with your take on your doc's reaction (changing his tune after your tests) -- in states (like Texas and Washington state too, so I read) where the medical boards don't take Lyme seriously, any doc who treats outside the med board's position can indeed lose his/her medical license and will then be no good to anyone.  California (where I am) has 'conscience' laws that allow docs to practice according to their own consciences, and that allows LLMDs to practice as they see fit.  It also means there are some quacks here, but I'd rather have the option -- for obvious reasons.

I have to take serious exception to the comment above in response to your post, saying:  "They don't want anyone cured because they want to find a cure themselves and make a lot of money."  

There is no proof to base that statement on, and it runs so entirely counter to the precepts of medicine that it is absurd to think that all the docs in Oregon are so greedy and have such wonderful dreams of getting rich when, someday, someday, in their spare time, they find the golden cure for Lyme -- and in the meantime, let the patients rot.

That could not possibly be true of ALL the MDs in Oregon and every other state does not allow MDs to practice according to conscience, and I find it a particular disservice to post such things here.

So please, don't buy into that.  Lyme is bad enough already without believing that all the docs are against you too.  They are not.

There is sometimes an underground of docs who will diagnose and treat Lyme, and that's why it's so important to troll the internet and find ways to a knowlegeable doc.

Please do not be dissuaded from continuing to look.  I understand that Washington state has the same issues, but since you appear to be close to the OR/WA border, you might also look for an LLMD there.

In the chain of messages above is commentary on how to find an LLMD.  Please don't give up.  And get a copy of those old tests from your former doc.  Always keep a copy of all such tests, because a good doc can look at them and see patterns.  Lyme will not show as a constant infection on the standard tests -- your immune system will stop reacting after a while, assuming the infection is gone, but in the case of Lyme, it can hide in your body and the tests will not see it.  

There is life after Lyme, and you deserve to enjoy it.  Don't give up.  There is life after Lyme.  Go for it.
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Tony,
I'm sorry that you inadvertently got in the middle of this. I'll bow out now but if you want to P.M. me that's fine. If not---- that's fine too. (I sent you a message but I don't know if each member has to designate 'accept messages' or not when they sign up. (Perhaps Jackie knows?)

The simple way to P.M. (should you chose to) is to just hover your mouse over my screen name on one of my posts and there will be "send a message". Click on that. Easy peasy.


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