Lymes or Not?

[kickntires]

Is it possible to have lymes for years and never be diagnosed with it. Last year I went to a homeopathic doctor because things were wrong with me and I was tired of being perscribed more medication.  I was wondering if they were causing more trouble.  My Homeopathic Doctor is an MD practicing in a hospital for 20 years and highly regarded. She diagnosed me with Chronic Lymes Disease. I was shocked.  I received alot of negative advise from family, etc.  They recommended I see an Internist.  I went, and I told them I was diagnosed with Lymes Disease, and he said there is no such thing in the Michigan not to mention the United States.  I went to another Doctor that was recommended and she pretty much agreed to do the standard Lymes test while I was having my thyroid test.  She said that there is no approved way to treat Lymes, you only treat the sypmtoms. I felt like a hypocondriac. My health has gotten worse over te last three years and now I'm on Disability.  I have all the symptoms of Lymes, I've lived on a farm my whole life, I physically built my own home in the WOODS, hauling trees and clearing land.  It's very possible, but I can't get it confirmed!  Any Advice would be so appreciated. Thanks

[nutrinut_bob]

Is Yspilanti in Mi?  No Lyme there?  I've a friend there who would say otherwise as he's been on antibiotics for over a year now treating it.  Follow the advice above and by all means avoid conventional medicine, they'll have you misdiagnosed with all manner of ailments, some of which they don't even believe in, but they have to write down something that fits within their norm.

[Ricobord]

Forgive my bluntness, but your Internist is an idiot. There is plenty of Lyme in Michigan, and there is certainly Lyme all over the United States. I would never go back to a doctor who is that uninformed, and yet willing to make medical statements on pure ignorance.

You could very well indeed have a case of late stage Lyme Disease.  Did your homeopathic doctor do a Western Blot test or were you diagnosed on symptoms and history (also known as a Clinical Diagnosis).

You could also have one or more of the common coinfections, such as Bartonella, Babesia, Anaplasma, Ehrlichia, or Mycoplasma.  When one or more are present with Lyme, all diseases present get worse, the immune system becomes suppressed, and other problems develop, such as flare ups of old virus infections, like  HSV-1, HHV-6 or EBV, or an overload of mold, toxins, or heavy metals that your body can't process anymore.

There are two primary groups with differing beliefs about Lyme and its treatment.  The IDSA, the infectious disease doctors, will say that if you test CDC negative on blood or CSF antibody tests, it means you don't have it. They will also say that if you do have it, it is always cured in a month of antibiotics, maybe two in rare, severe cases.

The other group, ILADS, is a collection of physicians from many specialties who see Lyme as far more widespread and far more varied than the official accounts. It can also become quite severe, disabling people and rendering them unable to work or even participate much in life. They also believe that other tick borne diseases can intensify the illness and complicate the treatment, and each disease must be treated in and of itself.  They have also observed that Lyme mimics many other diseases, and patients can be misdiagnosed with one of these, such as MS, Lupus, RA, Fibromyalgia, or Chronic Fatigue Syndrome.

Because so many Lyme patients remain ill after the standard 2-4 weeks of treatment, the IDSA explains their ongoing symptoms by calling it "Post Lyme Disease Treatment Syndrome."  They say the immune system is still causing inflammation, and that the symptoms will fade away in the next 1-3 years. This theory allows them to continue to believe they have "cured" the infection, even though they have absolutely no proof that it's gone.

ILADS believes that most patients can get well with long term antibiotic treatment.  It is completely untrue that you just treat symptoms to try to feel better.  A doctor who says this seems to believe that the disease is untreatable.  Either that, or she thinks you have Post Lyme Syndrome, as per the IDSA.

You definitely need an LLMD.  With the right meds based on what you have, you can get better and get your life back.  Travel out of state if you have to!  Don't just accept palliative care for your symptoms.

[JackieCalifornia]

Welcome to MedHelp -- you are asking very good questions, and I would do the very same thing and make the same analysis.

As you have already found out, the medical community is in total disarray on Lyme and its co-infections (bonus diseases the Lyme ticks often carry).  Each such infection needs separate testing and treatment, and has its own set of symptoms, so it's REALLY confusing to docs who do not specialize in Lyme.

Your homeopath sounds pretty wise.  She might be able to help you find a Lyme specialist, and you can also post here saying what area you live in and can get to, and someone may send you a private message, since we do not post Lyme docs' names in the open here, due to harrassment of Lyme docs by local and state medical boards.  It's a very messy situation regarding Lyme, as you are already seeing, and it will take a few years for it to get sorted out -- in the meantime, we paddle along, finding knowledgeable docs and getting properly diagnosed and treated.

I just googlesearched for

                    michigan lyme disease association

and there is one!  Check out their website.  Some of these local/state groups are better than others, but it's def. worth looking into.

Also you can email to

                     contact [at] ILADS [dot] org

and tell them what area you live in or can travel to to see a Lyme doc.  ILADS (Intl Lyme and Associated Diseases Society) is the main voluntary group for MDs who take a progressive view of Lyme and its diagnosis and treatment.  They have a big, somewhat rambling website, but if you want to read, it's there.

You will see the term LLMD, which is not an official title or degree, but just patient slang for 'Lyme-literate MD', meaning a doc who thinks bigger and more progressive thoughts about Lyme diagnosis and treatment.

So-called mainstream medicine calls LLMDs 'quacks' and doesn't want anything to do with them, so seeing an LLMD is like going to the dark side ... but once you cross into the LLMD world, it all starts to make sense.  Because Lyme is a developing field, however, some of the docs (even those who belong to ILADS) are a little far out there, so keep your antennae out, and be ready to change docs if it seems like a good idea.  Being on the cutting edge of anything isn't always fun.

Let us know how you do, okay?  And don't give up!!