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Advice for possible chronic Lyme sufferer?

Hi all
Finding this site seems like a blessing so far. I have been plagued with ill health and new symptoms for the past couple years. I believe it began in college when I was bitten by a tick or two. I remember clearly seeing some very small black bug on my forearm. I felt a tingling sensation like a bug crawling and by the time I saw it it had bitten me or burrowed in. I was so freaked out I ran to my dorm shower right away and scrubbed myself all over. Never thought of it since.
Fast forward a couple months and I feel fatigued easily, foggy, and ill. Sometimes I'd feel better overall but I always had the fatigue and fogginess. I ended up sleeping 10 or more hours a day and my grades suffered. Fast forward a few more months and I can't move/extend my arms without some twitch sensation. I brushed it off as a symptom from being head butted by some jerk. Mri and cat scans came back normal and those twitches come and go. Currently, many month later, I am still suffering from fatigue, occasional fogginess, imbalance, new allergies, pain, headaches, flu like feelings in the mornings, sleeping or resting most of the day, weight loss of about 15% body weight, tingling in fingers that makes me literally cringe sometimes, numbness in arms and legs sometimes, eye twitches/weakness, I'm sure there's more but you get the idea. My doc says she's ran all the tests she can think of (definitely not true, kaiser just seems cheap) and told me to accept I have chronic fatigue syndrome and began talking condescendingly towards me because I refused to accept it. I was last frustrated when this began, now I have no words for what I felt that moment and what I feel day to day. Oh yeah that's another thing, my mood can be shaky at times. I've always been a happy laid back guy with no worries even with demanding classes. I need my life back, as do all of us suffering with no answers. Sorry for the long rant, feels good to let it out and know I won't be looked at like a mental patient.( family actually put me in a mental place)
Is there anything I can do outside of Kaiser to get treated for Lyme once and for all? I'm 99% sure it's Lyme related that I want to forego the tests and just start treatment. I start school again next month so I desperately need to start recovery. Any advice or feedback is appreciated.
Thank you
3 Responses
Avatar universal
Welcome back at you!  This is a good place to get your bearings about Lyme and/or whatever else is ailing you.  Lyme likes to bring little friends with it -- other infections that travel with Lyme and hitch a ride on someone like you and me.    ---    You are right about the reaction of the medical community:  it's a lot of confusion and conflict, because Lyme (and the other infections the 'Lyme' ticks often carry) is still in the exploratory arena.  

You can definitely find a Lyme doc outside Kaiser, and you may well be better off with an organization/hospital with less 'top-down' control than a tightly run organization such as Lyme ... their approach has long been tightly-knit within the Kaiser organization, and they don't seem to have eased up and opened their minds about Lyme.

What to do?  Find a Lyme doc somewhere else.  Kaiser may be willing to pay for outside docs/treatment, but I don't know how others have fared in that regard.  You might search this website we are on now looking for the word 'Kaiser' and see what pops up, and then read those posts and maybe send a private message to the person(s) who posted and can give you the inside view of how Lyme and Kaiser interact -- or don't.
Don't worry ... if Kaiser is in the camp of the 'Lyme deniers', there are other docs, many of whom belong to ILADS, the International Lyme and Associated Diseases Society, which is imo one of the leading such organizations for MDs who have an interest in Lyme.  My Lyme doc was a member of ILADS, and it's usually a pretty good indicator of a doc who has his/her head screwed on straight.  ...   but as with any cutting-edge illness or infection, not all docs are really really good, so keep your antennae up:  you gotta start somewhere.

Look online for ILADS, and look for their referral function on the website.  Not all ILADS members are great or even really good docs, but you'll figure it out pretty fast if you have a doc that just doesn't feel right ... and if that happens, then go down the ILADS list and try again.

If you have any test results either now or later, ALWAYS keep a copy for yourself and share it with your new doc.  But DO keep the originals in your hands.  That background and test data is very useful to a Lyme doc.  

You say, "I start school again next month so I desperately need to start recovery."  The good news is that many who go into treatment for Lyme never feel worse than we did when we first dragged ourselves into the Lyme doc's office ... but don't expect to feel well right away.  I had Lyme and another infection the Lyme ticks often carry, and it took me 6-9 months of treatment before I began to feel good again.  I could still function, but it was like having a long-term case of flu, but not with the same symptoms.  It just takes time to find a good Lyme doc you want to work with, and treatment will be measured in perhaps 3 to 6 months, or maybe somewhat longer.  Others here will have comments for you too.

Gotta dash:  I've been up all night working, and need some sleep ... so I'm living proof that you CAN get over Lyme and its companion infections.  And don't get discouraged if the first doc or the doc's approach and plans don't seem to work right away.  Lyme moves at its own pace, and it will take a while for you to fully recuperate.  All good wishes to you!  Keep us posted.
Avatar universal
Thanks for the thoughtful response. I used ILADs referral link like you suggested so now I just have to wait and see.

My biggest concern is that there is permanent damage to my nervous system but I know I'll recover and that worry doesn't do me much good. I'm more upset that I, and all the doctors I've seen, have let it get this far and only chalked it up to just how things are. I can only imagine how many others go through a similar process and don't or never get diagnosed and it makes me sick to my stomach. Sorry for the vent again, I don't think I've ever been so frustrated about anything like this before.
I'll update on how the ILADs process goes.
Thanks again!
Avatar universal
You're quite welcome ... pretty much everyone here has been through some version of what you are dealing with now.  Symptoms vary from person to person, and when you find a Lyme doc to work with, it can be useful to have kept brief notes of your symptoms and how you are feeling each day, so the doc will have the 'back story' of what you have already been through.

Lyme often messes with memory (tho it doesn't do so with everyone), and having brief daily notes to hand to the doc will provide very important and useful data for your new doc to look into the past.  Symptoms that seems unimportant day to day could actually present a pattern that a Lyme doc will see as something significant.  Lyme is a tricky beast, and it takes a wise and experienced doc to notice all the hints and symptoms of whatever is ailing you.

My Lyme doc really REALLY liked the daily log I kept on computer, with columns for

--date
--medicines taken each day, including for each med
   -- name of the medicine
   -- how much you took and
   -- at what time of day
   -- how you felt when the meds kicked in
        (it often takes a while like an hour or so, for each of the
         meds to get into your system, and any side effects)
   -- how you slept, whether you needed or wanted a nap
         and about how long you slept each time ...

... and other details, to convey to your doc the symptoms that may provide clues and understanding of what ailments and infections you may have.

I kept my data on Excel spreadsheets on my laptop, but a notebook done by hand works just fine too.  The whole recording chore took maybe 5-10 minutes several times a day when you notice a symptom or at specific times of the day, like on rising in the morning, after taking meds/vitamins, mid-afternoon, evening, etc.  Whatever works.

You can start charting like this now, and that way when you locate a Lyme doc to work with, you'll have data to hand over right then.  

Lyme is a bacterial infection that has a bag of tricks confusing docs who don't have a solid understand of Lyme and its possible co-infections.  And Lyme can, in many of us 'Lymies', make it difficult to remember things clearly ... you'll see the patient term 'brain fog', which happens to many (but not all) of us, and without a chart to take to the doc, it's hard to remember the details of recent weeks when sitting in the doc's office.

One doc I saw early on didn't like my spreadsheet, and he said, 'Just tell me' and made it clear he didn't want to read my notes ... which was a sign to me that this doc didn't understand how profoundly Lyme infections can give 'brain fog' to patients.  That was a sign to me to find a different doc, and it was worthwhile.  

Lyme is a relatively new ailment that is not entirely understood by the medical community, so finding a doc who takes Lyme seriously and works in partnership with you, the patient, is imo extremely important, esp. given the complex symptoms and infections the 'Lyme' bacteria can bring.

I know how complicated all this sounds, but really it's quite straightforward, just noting down how you are feeling, what meds and foods you are taking, how much and how well you are sleeping, what meds you are taking (both prescription and non-prescription) is what the doc needs to sort it all out and know how to proceed.  

I would not worry that there is permanent damage to your nervous system:  it's *untreated* Lyme that is the problem.  Once you are treated, it can still take a while longer to feel like your old self again, simply because your body has taken a thrashing.  Be patient with your body, and know that Lyme and its co-infections are wholly treatable:  I am living proof, as are others I know.

Please keep us posted if you have time and inclination -- Lyme can be a lonely place, and being able to come here while I was being diagnosed and treated was very helpful to me.  

Now go get 'em!!  
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