Hi nbabz--
All good input already. I just wanted to add:
It can often take months to get into see a lyme specialist - but this is not time lost - there are several things you can do while you are waiting that can help you get a great start:
Self-education
It is VERY probable that you have many dysfunctions and system failures going on, with very probable underlying tick-borne infections. So, you're doing the right thing by investigating the cause but make no mistake - you are going to also have to address the various system issues going on, which could be even more complicated.
It's important to keep the complexity of your health systems in mind because lyme is most often a clinical diagnosis--meaning, tests are roughly inaccurate 50% of the time (producing false negatives) and MDs are supposed to diagnose you based on your history, proximity to endemic areas or history with tick bites and use the test results as a backup - not as sole indicators. With your VERY complex health issues, this might not be easy for even the best lyme specialist. It's best for you to do your homework... we can help! This is something you can work on "while you wait". Like Girlie mentioned--I'd start with the "New to Lyme?" thread and then ask any questions that help you with your unique conditions.
Documentation
A good lyme specialist will focus diagnosis on a clinical review that includes an in-depth health history AND very detailed symptom review. Some MDs have forms you fill out--many don't. You can jump start this by filling out the Jernigan's symptom evaluation and take a copy of it with you to your appt--or mail this info into your LLMD a few weeks before (my LLMD required new lyme patients to mail in info weeks beforehand, which gave her an opportunity to review the information and prepare beforehand so that during your appt she could focus on specific questions and dialogue with you).
www.healingwell.com/community/default.aspx?f=30&m=3033860These symptom lists also help prompt you to identify other symptoms not listed. It's also important to identify your history with ticks much like you did in your post. And a more detailed explanation and sequence of your symptom history will be very beneficial to your MD.
I've yet to see a symptom questionnaire as good as my LLMD's but it's copyrighted so I can't share it publicly. The difference was that she had the patient identify the severity of the symptom and the frequency ---this is important for helping to identify the dominant tick infection, which cues which treatment to start with, and the frequency can also indicate which infection is dominant due to the life/reproduction cycles understood about
various pathogens.
Underlying causes
Most ticks carry more than just the lyme microbe - they carry numerous other pathogens including bacteria, fungus, viruses, protozoa, the list goes on. tick borne infections. There are generally a few categories of the origin or cause of symptoms for lymees and having a good idea of where your symptoms fall into these categories is helpful to understand what infections or underlying causes you might be dealing with and what body systems need priority to facilitate the most beneficial response from treatment:
1) the symptoms caused by pathogens transmitted from the tick bite - lyme, babesia, erlichiosis
2) viruses like EBV or herpes strains that most people carry but lie dormant until the immune system becomes weak, these can also really overwhelm your body and be dominant and can also be carried and transmitted by the ticks
3) impact of the infections can disrupt body systems - it is very common for lymees to have endocrine issues, gut issues, etc. Since 70% of our immune system IS our gut and everything we eat and all supplements and medications are taken orally and need to be absorbed properly, gut health is absolutely critical.
4) the illness itself and the treatment as well can often cause significant inflammation, which can trigger other symptoms and autoimmune problems, or mast-cell disorder; many people develop yeast/fungal problems from the tick infections or from antibiotic treatment that can mimic lyme & co symptoms and disrupt healing.
Testing
I also highly recommend getting some IGeneX testing done ASAP. That will help get your foot in the door (not always--even ID docs refute positive lyme tests, but a good lyme specialist will know how to interpret your results correctly as well as most members here!)
Detoxing
You can also start detoxing to help your body with some of the issues you're currently dealing with and also to better prepare it for treatment time (this is beneficial regardless of whether or not you end up treating for lyme & coinfections or something else).
Diet
Again, since our gut is really the gate keeper for being and regaining health, it's sometimes helpful to focus on this first. Diet is important for anyone with a chronic illness but critical for lyme & co treatment. Many people overlook this thinking it's just a thing people say, but most members here can attest to feeling improvement--sometimes dramatically--when certain foods are eliminated and other foods are prioritized. Lots of good info in the "NtL?" thread.
Hope this is helpful!! If not, just keep asking questions...
-p
Lyme Moderator
Chronic late-stage lyme—likely infected in 2000; Clinically dx Mar'14 w/ Babs, + for Bart, CDC + for Bb. Multiple viruses & GI/immune treated first; started AL-Complex in May, A-Bart & A-Bab in July; Nov'14 IV port installed-started Rocephin; added vancomycin Mar'16
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock root; cholestyramine / jap. knotweed L-5-MTHFR LMN-V-II probiotic