Doxy antibiotics not working? Makes pain worse? New to Lymes HELP!

I tested positive for Lymes 4 years ago and started doxy. Well 3 days after I started the medication I was told to stop because further testing showed I did not have lymes (or so I was told). I have been having random pains throughout my body for years, I have always been tired and had 2 rashes on my face. Four years ago I was told I showed symptoms for Lupus I also had a positive ANA.

 

I went to have blood work done almost a month ago. I was told to come into the office which is not a good sign. First things I was told I have a severe vitamin D  deficiency then I was told I  tested positive for lymes but I was also told that I had a touch of lupus. The Dr said since I tested for lymes that I have to go on treatment for it which makes sense.

 

I have noticed since being on Doxy a lot of my body pains have because worse and in the amount of pain I feel each time I get them. I remember about a few days after starting I had severe pain all over for an entire day. Also I do not show any of the symptoms for someone who had long term lymes. Plus I never really can pin point a time where I become very sick (like so many describe with lymes). Also I am not a outdoors type of person, and people who know me who have had lymes or had someone close to them with lymes cannot believe I have it either.

 

So I guess out of all of this I have 2 questions.

 

1) Has anyone experienced worse pain while on Doxy?

2) How did you feel when you first contracted lymes disease?

Post Edited (LAWCHICK) : 9/1/2010 8:31:37 AM (GMT-6)

Lawchick,

Just a few things, just like Madrivergirl said it sounds like a herx.  Also, a very low Vit D level can cause bone & joint pain and muscle weakness.  I also had a Speckled pattern boderline ANA and my Neuro at the time said the same thing.  What someone on the Lupus forum said was you can't have a little Lupus, you either have it or you don't.  What I found out from the LD forum is that many people with Lyme have an elevated ANA.  I went to see a Rheumy doc because I wasn't happy with the answers, or should I say lack of answers  the Neuro was giving me.  He wanted to send me for a bone scan, to rule out "scary things", I kid you not.  He also told me that my pos Western Blot was a false positive, and:

a) It can't be lyme because I never saw a Bull's eye rash.

b) If I had lyme for seven years I would be much sicker.

c)  I had never camped in the Northeast, I did tell him how much we camped in Minnesota, Wisconsin, etc, but apparently the only place in the country that has infected ticks is in the Northeast.

d)  Maybe it's Rocky Mountain Spotted Fever, because I traveled to the Rocky Mountains, that's how stupid he was!

e)  When I asked (I had just found out about the pos WB the day before I saw him and I didn't know much about lyme at the time) how do you know if the antibiotics worked?  He said the test would be negative.

Don't believe everything a doctor tells you about lyme, most doctors know next to nothing about it and what they do "know" is usually wrong. 

My advice to you is to read all you can, a good place to start is the book "Cure Unknown, Inside the Lyme Epidemic" by Pamela Weintraub, check your Library.

Good Luck, KO

P.S. You can always ask here the people are great!

#1 I had trouble with Doxy too. At first I thought it was a Herx reactiona nd kept telling myself it was working REALLY well, ultimately though, I was allergic to it so I switched and did much better on Cefdinir (another antibiotic). I have never been sicker than when I was on Doxy.

#2 I don't know when exactly I got Lyme either. I had a known tick bite in Kentucky in June 2006, but I alson spent a ton of time mountain biking that summer/fall. I got pregnant in September and had wicked morning sickness (normal for me) and was wicked tired (not normal for me but normal for pregnancy). I just chalked all my symptoms up to being pregnant - even my doctor said the numbness and tingling in my hands was from the baby. I nursed him for a year and it was a huge struggle - tired, achy, had to rest often to keep my supply up, etc. A couple months after he was 1, I got pneumonia in August and it wouldn't go away - turned into pleuracy - and I started on the path to getting diagnosed with Lyme because there were so many symptoms at that point piling up.

Some doctors said I was just older but the one thing that ALWAYS stands out to me that my LLMD said in response to that was "You were a healthy person one year and now you are a sick person - THAT IS NOT JUST GETTING OLDER!!" Seriously - I went from coaching my kids football and baseball teams and outrunning 9 year olds to not having the energy to carry my chair to sit on the sidelines the next year. That's not normal aging.

I was also diagnosed with Lupus or possibly MS - she said she wasn't sure because she believed it was one or the other presentling abnormally. This was based off clinical info and my ANA as well. You may find (as I did) that by treating the Lyme, you will get rid of a lot of the other symptoms that could be attributed to other things. I had Hoshimoto's (thyroid condition) that resolved after 4 months of antibiotics. I have an odd patch of psoriasis that gets better on abx and later on an herbal antimicrobial treatment.

I think your doctor was right on about treating the Lyme first - odds are, if you're having a Herx reaction to the doxy - you have Lyme. Be sure to keep your doctor posted on how long and how severe the reaction is - keep on your abx without missing a dose - even though it is terrible. Hang in there!

I got really sick on doxy and had to switch to different antibiotics. Herxing was probably the cause.

Victoria

Thanks for the post Nature Princess - I just got back from my naturopathic doctor and am starting a major detox. I had an intestinal barrier assessment drawn a few weeks ago and the results are really poor for dairy and gluten so I will be eliminating those two. Also super high for a few different yeasts - even though I was on Nystatin when the test was drawn!

I am starting Bentonite Clay and a whole regiment of GI repair, including enzymes. My LLMD had talked about Low Dose Naltrexone, but my naturopathic had said to hold off because my CD57 score showed I was trying to fight it on my own.

I do Cats Claw and Epsilon Rizol for antimicrobials and have been off abx since June without getting sick or having a major relapse.


I'm interested to see how the detox goes for me - both with diet and herbal/clay support. I'm definitely feeling toxic these days!!!

I was on IV Doxycycline earlier this year. I herxed on it...made my gut threaten to shut itself down...as it was, I got a partial obstruction in my small intestine while on the drug, and my doctor thinks the drug had something to do with that (one my my major Lyme symptoms is problems with the motility in my gut).

When my son was treated with Doxy for lyme disease, it made him terribly sick. It was such a shock as we had never seen anything like this before.   We didn't know about the Herxheimer reactions back in 1993.