Lyme - My story thus far

[mjfmurray]

Well to start this all off and like to say hello to you all. This is my first post here as I haven't known i've had lyme disease for too long, and I hope some of you are willing to read this long story i'm about to post. I'm a 19 year old male living in PA having a hard time coping with my recently discovered disease.

So on to the story, it all began about 4 weeks ago with an intense headache that was unbearable. On the 4th day of having this headache I finally said enough is enough and headed to the emergency room. After getting a catscan, lumbar puncture, and a few other tests doctors could not explain what was causing my headache. I was sent home, only for my headache to get even more intense the next few days probably due to the lumbar puncture. I ended up going to see my family doctor who diagnosed me with migraines and started me on a beta blocker, a steroid to get rid of the headache, and imitrex for when I was beginning to get a migraine. The headache finally ended on the 7th day of having it, and I was feeling good due to the steroid I was prescribed (which I believe was prednisolone). However, as soon as the last day of that steroid was over all of my horrors began. I started having chest pains with my heart always beating at about 95bpm even when resting and I began to get pretty scared, knowing that i'm 19 and pretty healthy and usually have a heart rate around 60 something when resting. I figured it was nothing and it would go away so I waited about 2 days, and then I started having weird thoughts and wasn't thinking straight and then I was really scared. I told my mom we were going to the emergency room, and on the ride there I spotted a rash on my right arm that I hadn't noticed before. It took about 5 hours in the waiting room before I actually saw a doctor, showed her my rash and she immediately knew that it was the typical EM bullseye rash that lyme disease causes. At this point, I felt relieved that the doctors had finally found out what was wrong with me. They prescribed me doxycycline 100mg twice daily for 21 days and sent me on my way. They did not tell me what I was in for in the next week of having this disease. I got home and started doing some research on lyme since the doctors hardly informed me about anything lyme related, and quickly realized how much more serious of a disease it was compared to what I was told. I thought back and got pretty angry at my family doctor for prescribing me that steroid, considering every day I was taking that the lyme was probably just thriving inside of me. After doing my research I was extremely exhausted and needed to take a nap so I did. Woke up a few hours later feeling horrible, with a 101.5 fever and just laid there and took some ibuprofen. The next few days I just laid in bed not feeling so great, and extremely tired all the time. My heart still wasn't feeling right, almost like it was overworking to pump blood throughout my body so I returned to see my family doctor. He gave me an EKG which everything was fine on and told me it was probably all due to the beta blocker and told me to stop taking it. I hadn't been taking the beta blocker for about a week before I went to see him for my heart, so I knew that wasn't the case. Then sitting in the room with him I broke out with a rash that looked like poison ivy all over my arms and was itching like crazy, so I showed him and he told me I had poison ivy. I told him that's impossible, I haven't been outside in weeks and he told me just to let him know if the rash got any worse. When I got home I did some research and found out that lyme can cause a-typical rashes that look like poison ivy. At this point, i'm really upset because I know i'm being treated by doctors that have no clue about lyme disease and some of its symptoms. My family doctor also told me 3 weeks on 100mg doxycycline twice a day was probably OVERKILL to get rid of lyme disease. That really made me angry, because I knew that the recommended dosage was much higher than 100mg and for longer than 3 weeks. From everything that I have read, the minimum amount of time lyme disease should be treated with doxycycline is 4 weeks because the lyme bacteria are reproduced on a 4 week cycle and you need to kill it in the bacterias growing phase. On about my 4th day of treatment on doxycycline, I began symptoms of bells palsy. I am now on my 6th day of treatment and my bells palsy is pretty bad now, half my smile is gone and my one eye doesn't move anything like the other but I can still close it. I contacted a LLMD and they want cash in hand because my insurance wont cover it and my family just doesn't have the money for that, nor will we ever so I feel pretty depressed and helpless right about now. Every doctor i've seen so far seems to think that this disease is no big deal, even though I continue to see new symptoms almost everyday even with the antibiotic treatment. I'm also so fatigued and tired I can hardly do anything, I need to take a nap everyday - sometimes multiple naps and my head is always a little foggy and my thinking unclear. I get mild headaches and the vision in my eye on the side of my face with bells palsy goes blurry every once in awhile. I'm concerned because I don't know if the amount of doxycycline i'm taking will be enough to kill of the lyme disease, and I also have concern for co-infections like babesia because I was not tested for them and from what I read about babesia I have a lot of the symptoms it causes. I don't know who to see, I can't find a LLMD my insurance will cover, I feel pretty helpless really and I still don't feel good enough to do anything I just sit around all day and nap.

Well that's my story so far, i'm sure I missed a few details and the story may be a bit unclear but it's the best I can do right now. Any input or help is appreciated, and I thank the people who actually read through the whole story considering it's so long. Thanks again.

[Ricobord]

Most LLMDs use 300-400mg a day of Doxy, so while you were on it for longer than most mainstream docs will prescribe it, your dose was too low.  At this point, your treatment could still be fairly straightforward if you've only had it six months. But you need to get to a LLMD as soon as you can if you want to get well.

I also encourage you to post a new question to start a new thread.

[JackieCalifornia]

and PS, to post a new thread of your own, click on the orange colored button near the top of this page that says "Post a Question".

You might say something like "Seeking LLMD near Milwaukee" or wherever you can travel to.  That will get more reaction than tagging onto an old thread, which sometimes get skipped over by readers.

[JackieCalifornia]

Welcome to MedHelp --

The person who posted this original string of messages hasn't been around here for over a year, it seems, but we'd be glad to help you find your way to a doc who knows how to diagnose and treat Lyme and the other infections the same ticks often carry.

The sooner you treat, the better, because the longer the infection(s) go on, the longer it may take (and the more difficult it may be) to cure.  

Doxycycline is the standard treatment, but from my understanding (I'm not medically trained), a short course of doxy as you had often has serious limitations:  it has to be started very soon after infection, or can be ineffective; the short course you had may not be effective because of certain characteristics of the Lyme bacteria; and a work up for other infections that the same ticks carry is highly advisable, because these other infections do not respond to doxy.

I would not delay in finding a Lyme specialist for a second opinion.  You will see the term LLMD used here and elsewhere, which is patient shorthand for 'Lyme literate MD', meaning a doc who thinks more progressive thought about Lyme and treats it and the coinfections aggressively.  You seem already to know that you're still ill, so don't wait, go after it, because Lyme and its coinfections will not go away by themselves.
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I just did a google search for

             wisconsin LLMD

and got LOTS of leads.  
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Also you can send an email to

             contact [at] ILADS [dot] com

and tell them what area you live in (that is, which part of Wisconsin and near what cities) and where you can travel to easily (like Chicago or wherever).  They will send you some names of ILADS members, ILADS being the International Lyme and Associated Diseases Society, which has a huge website with a lot of Lyme-related information and is the main voluntary group for docs who think more progressive thoughts about Lyme (aka LLMDs).  They will send you back some names and you can check them out.  

NOTE:  We do NOT post doctors' names here in the website because docs who treat Lyme aggressively are often harassed by their state and local medical boards, and are threatened with not being able to practice anymore.
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Don't wait:  Lyme will not go away by itself, tho it will go through times (often seasonal) of more or less misery.  The sooner you get diagnosed and treated, the better.  Go for it!

And let us know how it goes, okay?  Best wishes --

[youknow2]

I was diagnosed with about 7 weeks ago.  I too took doxycycline 100mg but for 45 days.  I am in chronic pain all the time and my doctor will only prescribe a low dose of muscle relaxers that do nothing for me!  Also I have never really had acne and now am broke out all over my chin, neck and chest and was told it is eczema because of allergies.  I too did the emg and now have the beginning stages of carpel tunnel.  My hands and feet stay numb constantly, with my right leg and arm going numb a lot and makes it hard too use.  Have also been having server migraines yay know the list goes on and on.   I live WI and still can't seem to find a doctor that specializes in this area.  Also my doctor never told me ANYTHING about lyme and I have been showing/having symptoms since June of this year.  I hope you get well and get the treatment you need, keep us posted because this stuff is driving me MAD!!

[mjfmurray]

From what I read, it's the same as the doctors had me on before 100 mg's twice daily. While I was on the antibiotics I was feeling a lot better, now off of the antibiotic I seem to be getting a lot worse.

[ree427]

OK, I hope it all works out for you. I am not sure that the amount of doxy prescribed to treat acne is the same as the amount needed for Lyme. You may want to double check that:)

[mjfmurray]

I know, but LLMD's are out of the question for me unfortunately. Unless my family hits the lottery anytime soon, I probably will never have enough money to go see one. I think a infectious disease doctor will be a little more understanding then the doctors I saw previously, they may treat ME as a patient and not just follow along the lines of what 'should' be given for treatment. Anyway, if I come to a dead end I will probably end up seeing a dermatologist to get prescribed doxycycline as it was helping my acne while on it anyway. Being stuck inside all summer with all my friends out having fun and what not is giving me some serious depression unfortunately.

[ree427]

Sorry to hear you are still sick. It's possible that 21 days of doxy was not enough and/or you have some co-infections. From what I read, you should be on antibiotics until symptom free for at least one month or so.
Some infectious disease doctors are not well-versed when it comes to Lyme. A Lyme physician who is Lyme literate might be better in my opinion. www(dot)lymediseaseassociation(dot)org has a link for Lyme literate physician doctor referrals or you can try to google to find an LLMD in your area.

[mjfmurray]

Well i'm still tired like all of the time. Called my doctor today and got a referral to an infectious disease doctor, maybe they could help me more. Starting to get really depressed, this disease is commanding my life now. I get so exhausted I don't even want to move, or to the point I can't even think. Only have about a month left until my next semester starts and if this doesn't get any better i'm not sure if I can go back to school. I also still have muscle twitches like crazy. I really need to get this sorted out.

[mjfmurray]

Well it's been a few days off of doxycycline and I still have a lot of fatigue. I wake up still tired a lot, and I get really tired at points throughout the day to the point where I just want to lay down. I may possibly have a co-infection that needs dealing with, because all of my lyme symptoms are virtually gone besides fatigue. Or maybe as wonko mentioned above I may have an insufficient level of natural bodily steroids that our bodies need. I'm going to contact my doctor sooner than later if I don't see any improvements with my fatigue. I don't want to drink caffeine as i've read that it's important to let your body rest when it's tired with an infection so i've just kinda been dealing with it.  

[wonko]

If your energy remains low, you may want to seek adrenal testing.  Being seriously ill with infections may stress systems in your body and lead to insufficient levels of natural steroids that we need to feel "normal."


This is such a long and interesting thread, and I have not read all of the posts yet.  I will offer that I only sought out an LLMD after I literally exhausted all possibilities through mainstream medicine.  I also see a doctor who does not work through insurance.  However, I do not feel that the rates charged are exorbitant if one takes into consideration that my LLMD meets with me for an hour (as opposed to a short 10-15 minute insurance-approved appt, length).  I can appreciate that since LLMD's operate outside of IDSA recommendations, they also typically operate outside of insurance.  

Hope all are feeling well.

[ewford]

if you happen to have babesia your RED blood cells are infected and you actually will have a net blood LOSS.  That is how the Canadians were diagnosing some of their soldiers w/ CFS/GWI.  They would have a low rbc count.  The Babesia has a voracious appetite for red blood cells

[JackieCalifornia]

Glad to hear you are feeling better.  If the symptoms return or if your shortness of breath does not go away, do consider going back to the doc to discuss further treatment, or find an LLMD for an evaluation.  Best wishes --

[mjfmurray]

Well, doxycycline treatment is now complete as of yesterday. First day off of antibiotics, we'll see how it goes. Still seem to be getting tired more than I should, I usually start yawning and getting really tired around 8pm. Hoping that is just an effect of "post lyme" but we'll see. Before lyme I would be able to stay up for very long periods of time and hang with friends but it's tough to do that still. Also my muscles seem to be getting sore very easily which is odd, I think i've had more sore muscles this past week than i've ever had. Just from some games I used to play with friends all the time like ultimate frisbee and basketball. Hoping that my lyme is gone, but it's hard to tell. From what I read it can take months after lyme disease for your body to rebuild back to normal so on to that journey I begin. I also got winded very easily while exercising, sorta hard to breathe almost like asthma. I'm going to continue on with my everyday life and see if continue to improve or not, only thing to do now is give it time I suppose.

[ewford]

SWEET!   hope it works out, just take more ABX to ensure the lil buggers are completely gone.  I just met another person who got 4 weeks ABX after bullseye, 1 yr later, he can't button his shirt, had to retire as a policeman as his symptoms were so bad.   He's on a medical dissability now.   4 weeks dosen't cut it and the CDC needs to know that.

[mjfmurray]

Will do, first day i've been able to play my drums in 5 weeks. Feels great.

[JackieCalifornia]

that's good!  keep us posted.

[mjfmurray]

On day 12 of my antibiotic treatment, feeling great. Still taking vitamins every day, staying hydrated as much as possible. Still have facial paralysis, and a little brain fog, but overall I think my body is killing it off well. Virtually no fatigue anymore, can basically live my everyday life now with a couple brain farts every now and then. Keeping updated so there's info and hope for others like me.

[JackieCalifornia]

Taking a course of antibiotics against Lyme will often/sometimes (so I am told) stir the immune system to ramp up against the bacteria, so that a re-test after a course of antibiotics such as you are on may indicate higher IgG and/or IgM results, confirming a Lyme diagnosis.  Ask your doc.

[mjfmurray]

Well anyway, I'm on day 8 of my doxycycline treatment today. I've also prescribed myself to take a multi-vitamin, vitamin B-complex, vitamin D-3, and Omega 3 every day about 3 hours after I take my antibiotic. I've only been taking my doxycycline with water to ensure that maximum amount of it is absorbed into my body. I've gained a lot of energy, all my aches and pains have pretty much been eliminated. In fact yesterday was the first day I haven't had to take a nap since my treatment began. The only real symptoms I have left are neurological ones, such as my bells palsy and a little head fog once in awhile. I've read that there are no tests after clinical lyme treatment to tell whether it was successful or not. That i'm a little skeptical of, i'm going to try and convince my doctor into a least a blood test but we'll see at the end of these next two weeks.

[ewford]

I met a woman whos daughter at 13 had classic bullseye rash, Doc treated it with 4 weeks ABX, said she was cured.   Now shes 20, has RA, muscle aches, chronic headaches, IBS, CFS and has had a hysterectomy from benign cysts in uterus ( a common Lyme symptom).   DO NOT ACCEPT that chronic Lyme does not exist when a doc tells you that.  Any Lyme doctor will tell you that is not the case.   They see it every day.

[ewford]

BTW, I ONLY argue with Gary Wormser here.

[ree427]

I agree - I am sure there are good and bad doctors in every specialty, including Lyme. As I always say, "we have to be our own advocates" and you certainly sound like your own advocate.
Also - I use to practice nursing and teach EKGs to college students and never heard of a "special EKG" either. I wonder what they meant by this and how it's special.  Very interesting!
Best wishes to you and hope you beat the Lyme.

[ewford]

I understand your piont exactly. It's just the "CDC' broken treatment OR the ILADS treatment based on major clinical private studies.  Research Dr Jemsek at the Jemsek Specialty Clinic in Washington DC.  He's an ID doc that discovered the first AIDS patient in NC and has been succesfully treating them, and now, Lymes. He has seen the explosion of Lymes and Autoimmune issues and states Mycoplasma (infectious) play a large part in these chronic intracellular infections.  He has a very good website for info.