posted
After battling this illness since March 2008 with abx; it is becoming apparent that I am not getting very far, ugh.
After about 2 years of multiple oral abx, I began 3xweekly IM Bicillin LA; had been doing the injections for about 5 months, slight improvement, not great; but, heard it was a slow process.
I had a severe reaction about 10 days ago to the injection, tons of pain....after 20 hours I finally went to the ER. After blood work, various scans, MRI's, ultrasounds etc. I was admitted to the hospital due to myositis/rhabdomyolysis (muscle inflammation disease) in my buttock muscles (actually evident in both cheeks, but one side was much worse, over-the-top painful, bruised, swollen etc.) (CK reading was 41,000, normal is like 25-225).
The biggest concern was kidney failure along with elevated liver enzymes. Fortunately, I avoided kidney damage; after lots of flushing my kidneys began to rebound. I am now home after 5 days in the hospital trying to mend....they said it will take up to one month or more.
My CK reading is dropping much more quickly than my liver readings (don't remember the liver numbers). They attribute my high liver enzymes to all the trauma and expect they will eventually return to a normal range, I hope.
I, of course, can't do much about Lyme tx for now until I recover from this episode, which of course, has sent my neuro symptoms in a downward spiral.
I have read some connection between myositis and Lyme....I believe I just have so much inflammation that my muscles could no longer handle the trauma of the injections.
Anyone experience this? Heard of this? Just looking for input. I expect, hoping I can fully recover, that a PICC or Cath will be the next line of defense. I will no longer risk injections.
I just don't know how much more I can take....doesn't seem like I am getting anywhere.
Thanks for listening. Just thought I'd share my recent plight with LD. Wishing all of us better health. TS
Posts: 566 | From West Coast | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi there TS....I think that your condition may not have much company..been reading for years now and have not heard of anything like you've experienced.
What are CK levels? and my gosh, I guess yours were extremely elevated huh?
What I do want to say is that i'm thinking of you and hope that your numbers continue to come down.
Sorry to hear that your CNS stuff has acted up as well. I'm sure that with continued rest and care you'll come out of this in one piece.
Maybe the IV's are your ticket...always have hope and believe that there is a way out. keeping your body in shape as you have has no doubt helped you along the way.
Please update on your progress. Thinking of you!
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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As always, thanks for your input. In layman's terms, the CK level indicates the muscle fibers that the muscles release into your bloodstream, which are damaging to the kidneys.
I did do a search here. Only found a little bit of info on this. Appears I'm not the first person, but not that common either. It can involve an infectious agent, like HIV, which (thankfully) I am negative.
I do not believe this to be independent of my LD; from the little I've read, there is a correlation, even if not very common. Thanks again. TS
Posts: 566 | From West Coast | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you for sharing the info about the CK level TS....
wow, you were in a very precarious situation! I am sure that this is not independent of LD as well. Such a horrific nightmare this illness can be!
Stay strong, hang on, healing is coming your way my friend.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
wow that is brutal. Having a tough go. Hang in there. A lot of us have ups and downs but most people disappear from "lymeland" eventually and this will all seem like a horrible nightmare someday.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Just a thought.... Maybe it's time for a new LLMD. A fresh, new set of eyes to look at your case. Maybe you have not yet been put on the right combo of orals to battle all of your TBIs. [This has been my case for quite a few years. Now I am with a new doc and hopefully I will be moving in the right direction.] I am also looking down some other alternative paths such as AI and KPU (in addition to my current orals).
There are plenty of people who get cured with Orals only. The key is finding the right combo, and combatting ALL of your infections.
Good luck! Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
hey TS. It sounds like it's been rough. Hoping that you will be turning a corner soon.
How much Bicillin were you taking? I have just started but I only do it 1x every 3.5 weeks. 3 x a week sounds like a lot.
Posts: 2232 | From USA | Registered: Aug 2009
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Haley....Burrascano even recommends 4xweekly, so I don't think 3xweekly is that uncommon. Your dosage of 1 x every 3.5 weeks sounds very minimal...but, then look what happened to me, so who knows? Mind you, from what I've researched my reaction is so extremely rare.
Tammy....you may be right and I have been considering this. I have had 2 different LLMD's since I started treating in March 2008. Been with the current one for one year.The doc I would consider means a 3 hour plane ride, hotel, etc. Not only feels overwhelming due to feeling sick, but also the $$$ cost, ugh. Not a lot of choices out here in the NW, or anywhere for that matter I realize.
If feels like I have been on EVERY oral known to man to treat this disease. Mind you, maybe just not the right combos....I don't know. But, I've always been on multiple orals and don't think there's hardly a one I haven't tried, sigh.
I tested positively for babs, bart and ehrlichia as well as Lyme, sort of the "full meal deal" if you will. Mind you, supposedly all of these have attempted to be addressed with the various orals I've been on.
Migs....I like the way you think. May we all look back at this nightmare someday...it's one tough, humbling, awful road. Unbelievable really, don't you think? My kidneys seem to be rebounding faster than my liver....have added some liver supps and doing my first coffee enema this AM, oh yay! Thanks everyone! TS
Posts: 566 | From West Coast | Registered: May 2008
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I'm glad you posted this because in march of last year, I was also hospitalized for rhabdomyolysis (CK~20,000). I never found out what caused it and I was not on any injections (other than B-12).
My LLMD said he never heard of any correlation between tick borne disease and rhabdomyolysis. At the time I was also was dealing with inflammation of the gallbladder and severely elevated liver enzymes. Two weeks later I went into surgery and had my gallbladder removed.
If you find any information regarding a correlation between Lyme, Babesia, or Bartnella with rhabdomyolysis, please let me know. I will also do the same. I hope you feel better soon! This is quite a scary thing to deal with and exhausting!
Take care :-)
Posts: 11 | From New Mexico | Registered: Oct 2010
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posted
Since I'm fairly laid out at home on the couch - been doing some reading of my lyme books.
Guess what? Healing Lyme, by Stephen Buhner - discusses borrelia infection of the CNS and PNS....he lists some of the symptoms....myositis is listed; it's even in the index!
I've all along figured there must be some tie to my tick-borne diseases; I am so sick with Lyme and company that I just figured it might be some other weird manifestation....according to Buhner, it most likely is. Now how to get the LD under control??? That's the challenge.
I can't do much of anything until I, hopefully, heal from this....thanks. Spire - PM sent - I hope you're doing better! TS
Posts: 566 | From West Coast | Registered: May 2008
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My little brother used to get myositis after flus. If I remember right, he'd lose strength in every muscle. He used to have heart block from it, but his body repaired it itself. They said he had an extremely rare form of myositis.
Anyway, I never had myositis, but members of my family have had several "rare" medical conditions throughout their life. Out of curiousity, I researched if my brothers myositis could have been Lyme Disease, and that was the first page I found at the time. It creeped me out with the picture of the tick and everything. Now none of this means he is a carrier Lyme disease, but it is strange nonetheless. He's healthy and fit, but he tends to bring every flu/cold that goes around.
"Rhabdomyolysis can complicate influenza and, rarely, coxsackievirus myositis."
Did your LLMD ever check your coxsackie virus titers? I was tested long ago and was negative. Maybe you should do this? I'm not sure if there is an effective treatment for it.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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sutherngrl
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posted
I don't know if rhabdomyolysis has any relation to LD; but it does relate to many medications.
I had this reaction to a psych med a few months ago. It was very painful, but I was not to the point of needing to be hospitalized. I got over it in a few weeks; no damage thank goodness. I started a different medication and have had no problems with it.
I think it is possible that more ppl with LD get this reaction because we take so many different medications. Sooner or later some of us are bound to have this reaction.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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