[KarolH]

Hi Everyone,

My last post was letting you all know that I was dx with Lyme disease.

I was placed on Doxycycline, 100mg 2 times a day.

In the meantime I joined a Lyme forum to learn more.

Long story short...........folks there are telling me that the treatment prescribed to me is NOT nearly enough to get rid of Lymes and find a Lyme Literate MD to treat with.

Anyway, I am on my 5th day of treatment and the pain raging through my body is tremendous. On a scale of 1-10 I am at 100. I have made the decision to STOP THIS DRUG ALL TOGETHER.

I hurt so bad and I am so frustrated I could scream.

Also, a lot of folks at the Lyme forum can not help me understand why my pain level is so significant. I do not get it either.

Anyway, I have not been here in a couple of days, this is why.:worried::worried::worried:

 

[greenhaggis]

Sorry to hear that the antibiotics is not easing things!

Sounds to me like you need to see you GP for them to do more research on the correct antibiotics!

Take care,

Love Lesley

 

[LBH]

I agree

Sounds to me like you really need to see that doctor. Hope you feel better soon and I hate to see that you feel so badly. I have a friend of mine that had the lymes and she was placed on IV antibiotics for hers. But she had a bad case of it!

 

[KarolH]

Sounds to me like you really need to see that doctor. Hope you feel better soon and I hate to see that you feel so badly. I have a friend of mine that had the lymes and she was placed on IV antibiotics for hers. But she had a bad case of it!

I do not know how "BAD" my Lyme is I just know I am really sick.

Oddly enough, I also have 1 knee that has blown up like a balloon for some un known reason.

 

[cath]

Hi Karen, I wonder if you don't need to go to the ER to get seen.

You have a lot going on, and I am worrying that you may be delevloping a comlpication or exacerbation of one or more disease processes.

If you are feeling so bad, I think getting seen before Monday is justified.

Take care,

X C X

 

[KarolH]

Hi Karen, I wonder if you don't need to go to the ER to get seen.

You have a lot going on, and I am worrying that you may be delevloping a comlpication or exacerbation of one or more disease processes.

If you are feeling so bad, I think getting seen before Monday is justified.

Take care,

X C X

I think you may be right Cath.
Thanks.

 

[LolaLola]

Dear Karol, That level of pain will wreck you. Please go to ER, and make sure someone transports you, you must be far too distracted to drive there.
x Lola

 

[halfpintfl]

Hi Karen, I would not stop your med,all at once, Right Away, without calling either the dr. or th pharmasist at your local pharmacy, it could be dangerous.
And that idea about going to the emergency room seems kind of smart to me.
Everything happens on a weekend!!! Please take care of yourself and when you are able, please let us know how you are.

 

[KarolH]

Well the last pill I took was yesterday morning and although I am not setting the world on fire I am a little better then yesterday.

It made me wonder if Doxycycline, or antibiotics in general can cause Lupus to flare?????

Just a thought but I do not know.

Anyway, I should hear from the Rheumy doctor on Monday......I hope.:wink2:

 

[Lily]

Hi Karol,

I'm glad you are feeling a little better today :hug:

Lupies can be sensitive to a lot of meds including some antibiotics, sulphur based ones are a classic example as are the penicillins. Who knows, but it's worth mentioning to the Rheumy for sure. They will have to sort out this Lymes business with some kind of medication.

Let us know how you get along on Monday.

love
Lily

 

[Jeffrey]

Karol, from what I have read about Lyme disease, if you do have it and the antibiotics are working, the bacteria does fight back, hard, and you do get worse. It's called Herxing or something like that. Maybe it was working? I am asking my Doctor to put me on Doxycycline and the type of event you described is what I am hoping for, at least if it really does mean it is working.

What Lyme site did you join? I need to find a good one.

 

[Clare.T]

Hi Karol

I am sorry you are in such pain - what a terrible time for you ((( Karol))))
Diagnosis of Lyme seems far more controversial than SLE and trying to distinguish between the two could be a perfect nightmare, in some cases at least. People can have both too along with other tick born infections.

I hope your doctor can help you- surely he should have told you to call if you had difficulties.

The reaction Jeffrey mentions is " Herxheimer's"


The Herxheimer reaction (also known as Jarisch-Herxheimer or herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver. It is manifested by fever, chills, headache, myalgias, and exacerbation of cutaneous lesions. Duration in syphilis is normally only a few hours but can be much longer in other diseases. The intensity of the reaction reflects the intensity of inflammation present.
The Herxheimer reaction has shown an increase in inflammatory cytokinestumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2] during the period of exacerbation, including ..............


[Wikipedia]


________________________________



Tetracycline, sulfonamides and... -rarely, penicillins or ciprofloxacins can exacerbate lupus or increase the risk of allergic reactions but do not cause lupus

From The Lupus Book 2cnd edition p49

There are a few cases of Minocycline induced lupus but as good as none for Doxycycline, from what I have read.

I hope very much you will be feeling better soon.

Clare

 

[KarolH]

Thanks Jeffrey and Clare,

I do believe that I had a Herx reaction for sure.

I could not stay on the doxycycline because I could barely walk, literally.

I am still not good at all but every day a little better.

I do hope to hear back from someone at the doctors office tomorrow.

In the meantime I am looking for a LLMD (lyme literate medical doctor) to treat with.

Finding one is tricky and finding one who takes insurance is even trickier.