Lyme?

Hi - First I'm new to this forum and was wondering if this forum covers all tick-borne illness or only Lyme? "Lyme" seems to be the catch-all term here in CT

My husband went for a physical and the doctor found an embedded tick in his upper arm about 6 weeks ago. At 61 years old, he has a lot of moles on his arm and never noticed it. Even at that point in time he had stiffness in his shoulders and arms; and his doctor immediately gave him the short term antibiotic cure, and the ache went away temporarily. Also his test came back negative; and I understand they are not at all reliable.

A few days after the cure, the aching was back - worse now than before - and now it is most joints including his knee is now swollen. She then gave him a new cure (still antibiotics, I expect) with longer timeframe/duration. (Previous issues with knee - was a college basketball player, but typically not swollen like it is now.) He is still in pain and while his doctor gave him referrals to "lyme specialists", the wait is long and the cost is expensive.

He went to a vitamin store and they recommended glucosamine chondroitin for the joint pain (doctor classified it as fibromyalgia -general term), a probiotic, and "bull's eye" for targeted immune support. The glucosamine chondroitin worked for 1 day and he seems to be going down his quickly.

What do you (anyone) recommend our next steps? Should we go ahead get the test done that many posts refer to? How can i know if differs from the test his doctor did. I used ILADS for referrals in my area plus NYC, but it didn't seem to yield much results (3 to be specific). I'm getting a bit anxious because I know how debilitating the disease is and also complete misdiagnosis if in the hands of the wrong doctors.

I've read through many of the posts and will continue reading, but next steps or guidance would be appreciated - treatment, cures, western med, eastern med, anything.

Thanks very much

Hi kathyk_ct

I also wanted to welcome you - sorry you're here but really glad you found us. We'll do what we can to help you get help for your husband. As you probably intuitively guessed, and read already - it's up to you to advocate for him. Even in the endemic CT, there is mostly disinformation about Lyme among the medical "professionals".

We can share suggestions for what to get started with now, and what you can do while you're waiting to see a specialist.

FIRST
You need to get on the waiting list for a specialist in your area ASAP (or two - just in case). Most will tell you there are months-long waiting lists and ask to be placed on the list. But also, please ask to be placed on their CANCELLATION list and then call on a weekly basis to check in to see how the wait is coming and to impress upon the office the urgency of your situation. ALWAYS be polite and kind and respectful of their time and very likely overwhelmed situation in the office with such need and many other patients calling in desperation, like you are. But it is also necessary to "be in their face" and be persistent.

Please email Girlie, our head mod, and she can help you with contact info for LLMDs in your area to consider - we do have a list of names. You can find her email address in her profile. Or click here:
www.healingwell.com/community/profile.aspx?f=30&p=197951

I'm also a mod but not around as consistently but will help however I can.
​
As you already know, you will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, have been trained in archaic and outdated Lyme science that suggests a very narrow definition of one version of Lyme they think is "hard to catch and easy to treat", and don't believe in the reality of chronic Lyme. They will follow the archaic treatment protocols that have many risks.

ILADS has their own referral system as well:
​​​ilads.org/ilads_media/physician-referral/

ILADS web site has 2014 Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​

Y​ou can email ​the​ Tick-Borne Disease Alliance at​: [email protected]​

And www.LymeDoc.org

Lyme coaching
www.lymecoaching.com/#!schedule-a-call/c1gzt

NEXT:
If you haven't already, please review the "New to Lyme?" thread info at the top of the page - it has invaluable information about diagnosis, symptoms, treatment, etc. and will help you prepare for your first appointment.
www.healingwell.com/community/default.aspx?f=30&m=1606610

While you are waiting for your appt there are several things he can get started on that will help your Lyme specialist reach an accurate diagnosis, help your appt be more productive, and might even help alleviate some of your husband's symptoms and suffering.

Getting ready for your appt
One of the many reasons Lyme specialists are so expensive is because a Lyme diagnosis is clinical and doesn't follow many of the typical processes that managed health care structures (in other words, it's far more complex, time-consuming, and custom based on the needs of the patient---which is how healthcare should be but doesn't fit into a financial model required by the insurance companies...) and because of this, many specialists don't participate in insurance programs. Most MDs will require at least a 1-hr initial appt and possibly the 2nd appt as well - in order to have enough time to get through all of the various questions asked of health history, exposure and symptoms.

Many specialist have the patient provide this history prior to the appt and I HIGHLY recommend that you do it even if they don't require it - will help YOU be comprehensive and will help them too. You can mail it into the office and bring a copy with you.

Here is a good start - a symptom analysis you can complete. I also have an example of another questionnaire my MD gave me - you can email me if you'd like it.
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

Antimicrobial herbs
As PeteZa mentioned, many people have healed using herbal protocols. There are a few that I think you can get your husband started on while you're waiting - one is astralagus and with the joint swelling you might also try japanese knotweed, which is also an anti-inflammatory and maybe also turmeric, another anti-inflammatory. I would post a new thread asking specifically what herbal protocols people suggest while you're waiting to see a Lyme specialist.

Preparing for treatment
If your husband has any GI issues, it might be a good idea to start a healing process. 70% of our immune system IS the mucosal lining of our GI tract and no magic antibiotic or herbal protocol can heal us from tick-born diseases without the support of our own immune system. So it's important to have a very healthy GI function since nearly everything we take for these treatments is taken orally and needs to be properly absorbed in order to be processed. There is a lot of info on this forum and online about healing the GI.

Hope this is helpful - please continue to ask questions!

-p

Sorry - forgot to add a few things to my post!

Also wanted to mention that the prophylactic dose given by these MDs is not a "cure" for anything - despite what the MDs might tell you. Certainly not a cure for Lyme, which is what the science shows (200+ studies) that the Borrelia burgdorferi microbe can evade and disable the immune response and antibiotic treatment can also create "persister" forms of the microbe. Studies also show that the IDSA's guidelines, which recommends these ridiculous "prophylactic cures" fail to cure much less effectively treat most people.

As Girlie mentioned, you probably don't need testing to support a diagnosis but it's likely his earlier test was negative because of one or more of the following reasons that these tests are only 50% accurate:

- it takes a few wks after initial infection for the body to mount an immune response, if it's strong enough to do this

- the Lyme tests are serology tests meaning they look for an immune response of antibodies, not for the microbes themselves. so if your immune function is weak, which it can be simply from your health status at the time of infection, and/or it can be weak from the Borrelia's ability to disable it, or simply evade it, it's likely you won't produce enough antibodies for the tests to detect. Often, the sickest people won't test positive.

- and the tests are looking for only a couple strains, when there are over a hundred.

- the CDC's testing methodology is geared toward surveillance data purposes, NOT for diagnosis so the criteria to produce a positive result is VERY strict and most people can't meet the criteria---nor should we be required to. That's why the CDC warns MDs not to diagnose solely from the tests and that Lyme is a clinical diagnosis (diagnosis must also consider health history, exposure and symptoms) but MDs either don't know this or ignore it and have no idea how to clinically diagnose, and simply tell patients a negative test means they don't have Lyme.

- studies show the tests are about 50% accurate - for all the reasons above. I think you've probably already read about all this.

Thank you so much for all your wonderful feedback and kindness. I'm going to be reading through all the links, etc tonight.