Early Lyme or am I a hypochondriac?

[fire_riven]

Hi everyone,

I'm actually posting on behalf of my husband, not myself. We live in CA, but about 3 weeks ago we went to a wedding at a summer camp in Duxbury, MA. It's a high-Lyme area, but we didn't really think about it so didn't wear any bug spray, long-sleeves etc. It wasn't all that rural: we slept in log cabins, didn't go hiking etc. but it was outdoorsy: there was a lake and the ceremony was in the woods.

Anyway, about 3 days after we got back home, my husband came down with what looked like a pretty bad round of the flu. Extreme fatigue, chills, mild fevers (between 99 - 101) at night, bad headaches, stiff neck and aching leg muscles. It's now 14 days after the symptoms started, and he's still experiencing the headaches & aching legs, although they're not as bad and his other symptoms have diminished.

He went to the doctor today: the guy didn't even examine him, just said that he thought the possibility that it was Lyme was "remote" given that there was no obvious tick bite or rash. He said to treat it symptomatically and take Tylenol... Now, I'm not a doctor, but don't almost 1/3 of all Lyme cases present without a rash? It seems like that would be something very easy to miss. It also feel like it would be easier to just treat with antibiotics now, even if the chances of chronic symptoms manifesting in the future is small.

I don't really know what to do next, but I am worrying a lot :( I also know that I can be a hypochondriac and obsess about these things. I know there are a lot of people here with a great deal of experience with Lyme. Does anyone have any thoughts/advice on what to do next? Or am I worrying over nothing?

Thanks in advance for any help :)

[fire_riven]

Thank you again - this is so, so super helpful.

I got your PM (sent you a reply) and looking into getting an appt. with a Lyme doc soon. Fingers crossed.

I'll let you know if there are any updates. In the meanwhile, thanks for making such a great difference to me :)

[JackieCalifornia]

You are very welcome.  It took me 20 docs to get a diagnosis of Lyme, and even then Doc #20 told me it 'couldn't possibly be Lyme.'  Sigh.  So I hear you.

About the doc who wouldn't explain his rationale:  Docs who treat Lyme but are not LLMD-types can be rather defensive, I think, because they are clinging to Received Wisdom that is shakier by the day.  Yet these docs are so wedded to the idea that big medicine must be right that they grit their teeth and keep believing.  It will all get sorted out someday, but not soon enough.  

Your husband's doc sounds a bit defensive, which he should be.  Heh.  I think many otherwise good docs are caught between believing what so-called mainstream medicine tells them about Lyme and their own inclinations.  I don't remember there ever being such a split in the medical community over the years I've been watching friends and family who are in the field.

In a few minutes, I will send you a 'private message' through this website with the name of my LLMD.  At the top of the computer screen on this site, there is a long blue bar with a half dozen buttons to click on.  One says 'My MedHelp', and there will be a '(1)' after it when I have posted a message to you.  Click on that button and it will open up.  Those messages are not posted here on this thread and go only between us (and the MedHelp people, but they have better things to do than read them), and I like to keep LLMD names out of the public view, to avoid them getting picked on by those at the medical boards who think Lyme = the sniffles.

You ask:  "after the initial symptoms die down, the person can feel fine for a long period of time before the chronic ones manifest. In your experience, is this true?"  It's hard to say, because Lyme hits each person a bit differently.  Some of us have more neurological effects (aka neuro-Lyme), some have it more in the joints and muscle.  Then when you add possible co-infections, which each have their own set of symptoms, and each person's immune system responding in its own way, there is a wide variety of presentations in "Lyme", and yes, if the immune system can hold off the infection for a period of time, one might feel better.  I think that is partly what confuses nonLLMDs and why they cling so tightly to the current orthodoxy.  (Side note:  I don't think I've used the term LLMD above.  You'll see it commonly, short for 'Lyme-literate medical doctor', meaning a doc who thinks bigger thoughts about Lyme, like my doc, and apparently not like the doc you've already seen.)

You ask, "is it more of a gradient from initial symptoms through chronic ones?"  Everybody's different.  I felt awful, which is what took me through 20 docs, but another member of my family protested when suggested that they be tested too, since we had been all the same leafy places, saying, "But I feel FINE!"  My LLMD humored me and tested my family member ... who was then diagnosed with:  Lyme and babesia.  Same as me, but didn't feel as lousy as I did.  After we both had treatment for both infections, I got a sheepish concession that 'Gee, I didn't realize how worn down I was, I thought I was just overdoing it' with activities and work and so on.  

In summary, how we each feel is a mix of our immune system activity (note that Lyme can suppress the immune system) and which infections we get and whether they are more specific (like neuro-Lyme) or more generalized to the whole body.  But always keep in mind that even if your husband starts to feel better without treatment, the Lyme infection is still there, along with any co-infections, and Lyme is in the same bacterial family as ... syphilis.  That alone is reason to treat aggressively imo, if you've read about the effects of syphilis before the advent of antibiotics.

So in answer to your question, "I'm trying to figure out whether I should keep investigating if he starts feeling better."  Yes.  Absolutely.  

Putting a name to the beast is a relief in many ways, so once testing is complete, you will know what you're fighting and the battle begins in earnest.  I would not hesitate to get treated, and treated fully.  Best wishes!  Keep us posted.

[fire_riven]

Thanks, kittycar, I appreciate your response. I'm going to look into finding a specialist nearby. Good luck to you, too!

[fire_riven]

Thank you so, so much for such a thoughtful, logical and detailed response -- I really appreciate the time you took to reply to me. I feel better and calmer just reading it. It's good to know that there's something I can do, and also good to know that we weren't crazy for thinking it could be Lyme.

Agreed re: docs. Maybe (hopefully) he's right, and it's not Lyme, but would it really be too much to take 5 minutes to explain his rationale/thinking? We're not stupid. Hubby definitely felt as though he was being brushed aside. Anyway...

You said "Let us know how we can help." Right now I can think of two things that would be helpful:

1.) Finding a Lyme doc: we're in the Bay Area. If you (or anyone else) have recommendations, that would really help. I did do a Google search, and you're right: some of those results definitely look suspect, and I'd have difficulty knowing which ones to trust. In the meanwhile, he might try seeing another doctor at our health center - it could be that a different doc might pay closer attention or refer him to someone in the network who will.

2.) I realize that everyone experiences symptoms differently. I'd heard before that with Lyme, after the initial symptoms die down, the person can feel fine for a long period of time before the chronic ones manifest. In your experience, is this true? Or is it more of a gradient from initial symptoms through chronic ones? It seems like his symptoms are clearing up a bit now, so I'm trying to figure out whether I should keep investigating if he starts feeling better.

Thank you so much again for all your help -- this might sound odd but I feel like there's a load off my shoulders already. I really appreciate it :)

[JackieCalifornia]

Welcome to the Lyme page -- well, okay, I know we'd all rather not be here, but hey.  We're glad to help what we've learned collectively.

You say:  "we went to a wedding at a summer camp in Duxbury, MA. It's a high-Lyme area, but we didn't really think about it so didn't wear any bug spray, long-sleeves etc. It wasn't all that rural: we slept in log cabins, didn't go hiking etc. but it was outdoorsy: there was a lake and the ceremony was in the woods."

Well .... that's pretty rural, and the ticks are everywhere.  The ticks are tiny, like the head of a small pin, so easy to miss, esp. if they bite on the scalp or some other place not easily seen.  I never saw a tick or a rash on me, but I definitely had Lyme and another disease the same ticks often carry (there are several such 'bonus' diseases, called as a group 'co-infections').  

You say:  "about 3 days after we got back home, my husband came down with what looked like a pretty bad round of the flu."  Yeah, I described my symptoms as a cross between a hangover and the flu.  Everybody is different in how their body reacts to Lyme, partly because of which co-infections contribute their own set of symptoms, and just because everyone's immune system is different.

"Extreme fatigue, chills, mild fevers (between 99 - 101) at night, bad headaches, stiff neck and aching leg muscles. It's now 14 days after the symptoms started, and he's still experiencing the headaches & aching legs, although they're not as bad and his other symptoms have diminished."  Everyone is different, but I wouldn't ignore these:  something is going on for certain.  If it's not Lyme, a Lyme doc will be the first to say so, and can then likely suggest other appropriate medical care.

You say:  "He went to the doctor today: the guy didn't even examine him, just said that he thought the possibility that it was Lyme was 'remote' given that there was no obvious tick bite or rash."  Ignorance and arrogance are SUCH a nice combination to find in an MD./sarc  

Lyme will not go away by itself, and antibiotics are required (tho some use herbs alone or along with antibiotics.  I was treated solely with antibiotics, so I'm inclined that way, but to each his own.)

You say, "Now, I'm not a doctor, but don't almost 1/3 of all Lyme cases present without a rash?"  You are correct.  There's no exact number, but yes, it's a lot.  (Think of all the people with Lyme who never saw a rash and then never saw a doc!)  I never saw a tick or a rash on me, and neither did a family member, but we both had Lyme and a co-infection the 'Lyme' ticks often carry.  

"I also feel like it would be easier to just treat with antibiotics now, even if the chances of chronic symptoms manifesting in the future is small."  Agreed.  

You are not a hypochondriac; you are watching objectively, and you know something is wrong.  What to do next?  I would find a Lyme specialist right away.  Waiting won't help, but a short wait isn't terribly detrimental while you find a doc and get an appointment (this is a very busy time of year for Lyme docs:  late summer.)

What part of California are you in?  I can send you a private message with my doc's name if you're in my part of the state.  Also there are many organizations for people with Lyme or concerned about having it, and California does not restrict MD's ability to diagnose and treat Lyme (as happens in some other states).   We can also send you links to organizations who can give you names of Lyme docs near you.  

Oddly enough, the docs who specialize in neurology and infectious disease are often the least effective when it comes to Lyme:  they are stuck on the decades-old theory that there's no Lyme in California, and if Lyme is here, it's uncommon, and if it still gets you, a couple weeks of doxycycline will fix you right up, which is not necessarily accurate, and then there's the whole lack of awareness about the other diseases the 'Lyme' ticks often carry in addition to Lyme, called as a group 'co-infections.'  Whew.  Many docs disregard the possibility and don't even test for co-infections, even tho statistically speaking, about half of Lyme patients also have at least one.  (I had Lyme and babesiosis, which is like malaria.)  

All this is why going to a Lyme specialist is so important.  A Lyme doc can be a general practitioner or a specialist of any kind, because what's important is experience and an open mind.  Let us know how we can help.  (I would say just 'search on line for 'California Lyme', but unfortunately that also brings up docs who are terribly ignorant about Lyme, but don't know how ignorant they are.)

Take heart!  You are doing the right thing by your hubby.

[kittycar]

fire_riven,

I would suggest looking online for a Lyme-Literate Doctor in your area and see them ASAP.  When I first started having symptoms my family doctor wanted to send me to a neurologist because she thought that I was crazy.  LLMD's can be expensive, and you may have to travel to see one, but I believe that it is worth it to be seen by someone who has extensive knowledge about these diseases and is up to date on the treatment protocol.  

Hope this helps and good luck!!