posted
I went to my family Doctor and took a Lyme test which came back negative. I was fatigued with a painful neck symptom. Typical I guess. I did test postive 5 years ago for Lyme and was treated with Doxy sucessfully. Not sure why its not showing up now?
So I went to se a LLMD. He treated me symptomatically and have been on Doxycycline 100mg X2 twice a day with Hydroxychloroquine (Milaria medication I was told) 200 mg X2 also twice a day for 24 days now. I feel twice as bad all the time now as I did b4 the starting the medz. My neck pain is about the same but the upset stomach and weakness makes me wonder why Im on these medz.
My neck is still killing me and im nauseas just about all day every day since I started on the meds. I have not been to work in 2 weeks. My neck has been hurting for almost 8 weeks now. I went to see a LLMD in Connecticut about a month after I had such terrible neck pain. So I have been on meds for 3 1/2 weeks now with what dosent seem to be any relief.
I also had a bad panic attack a few nights ago for which I took medicine for to help. I had a panic attack about 4 mnths ago as well which is why I had some medz for it.
Should the medication be taking this long to work? And is this the best medication for me?
I was told that the meds bring out the bacteria and when the bacteria die off they release toxins that could make me feel worse before I get better. I just dont seem to be getting any relief. I seem light headed all day long. And my neck wont stop hurting! Any advice? Thanx.
Btw, My blood was sent out to Igenix and I will have the results Monday.
If you are on doxy you must never lay down within a 1/2 hour of taking it or you can burn up your esophogus.
Do not eat dairy or even dare go in the sun while on this med. Also, should always be taken with food. It is very harsh on the stomach. Read the info pamphlet with the abx carefully or check with your pharmacist.
Alot of us have constant neck pain. Sometimes meds for pain might help, massages or hot compresses, water bottles can give some relief.
I would report your symptoms to your doctor for evaluation though in case you are having reaction to the abx.
Along with your abx you should be taking probiotics to replace good bacteria that the abx is killing, vitamins & immune supplements, and anti fungal supplement. Perhaps your doctor has already given you these.
So sorry you are feeling so bad and hopefully you will see relief soon.
Other will surely be posting good advice too.
Good luck on your test results.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
posted
Plaquenil can cause me to be nauseous if I take it on an empty stomach. A full meal isn't necessary, but having something in there helps. (for me)
Feel Better Carly
Posts: 797 | From New York | Registered: Feb 2008
| IP: Logged |
posted
Please post your test results when you get them. We'll help you interpret them.
Yes, the treatment can be worse than the disease...but if you want to get rid of it... you must go through it.
Hang in there!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This may explain why treatment is complex. Also, coinfections are frequent. Your doctor probably suspects babesia. It is similar to malaria and that is why you are on the antimalarial.
It a very rough road but if you read all you can - or watch DVDs of the ILADS seminars, the DVD "UNDER OUR SKIN" - it becomes clearer.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . . Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
posted
My right arm seems to be going numb. Maybe I should go to the hospital.
I keep throwing up then feeling better like I have the flu but it's gone on way to long to be the flu.
Seems like im dizzy and lightheaded all day long. I guess I will know more tomorrow if I make it that long.
It almost feels like im about to have an anxiety attack all day long. I feel like im slowly dieing.
Anyone know why my arm is going numb? Is that normal or what. I can still function with it but it feels like I was sleeping on it and just woke up. Kinda feels like my feet are somewhat numb as well. Starting to get a little concerned.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Lyme treatment is no walk in the park, but you sound like it may be best to call your doctor - the meds may be causing the vomiting but you'd also want to ask about your arm.
As no one here can know your background I think the most frequent answer would be to call your doctor or go to Urgent Care.
Be sure to take the Rx information sheets with you - or the bottles.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
24 days was the exact time it took for my first herx to hit. If you feel you are in danger, go to the ER. Most likely it's a herx, but better safe than sorry.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Ok, thanx for the responses. I will update tomorrow after I see my LLMD and get my results from Igenix.
Posts: 59 | From CONNECTICUT | Registered: Sep 2008
| IP: Logged |
posted
GNBRETT - These are all symptoms people complain about when herxing, but you should always run it by your MD. When I went into my doctor and told him that for three weeks I was feeling horrible - fatigued, weak... much worse than before the abx. I asked if it was too long to be a herx and he said not at all, they can go much longer depending on how long you've been infected. He said he's seen people completely incapacitated. My first time being treated, the neck pain was the last to go. Make sure you take something to reduce inflammation like Wobenzym.
Posts: 144 | From Connecticut | Registered: Sep 2006
| IP: Logged |
Ok, so here are the Igenix results. It's all foreign to me so maybe you guys/galls can decifer it for me. My LLMD was not in today. A little aggrivated by that but that's life I guess. Btw, I was not on any ABX when this blood test was taken.
I don't know what the hell is wrong with this website? I tried updated the results so they would be in line with each other but every time I try to update it nothing happens. Whatever. Is there any way to decifer how long I have had Lyme from these results? I see a lot of positives so im assuming I have some sort of Lyme. Do certain bands require different meds. Im still having trouble with my right hand. Seems numb. I can grip things but it feels like it's partially asleep. Appears to be neurological in some way I guess. That's just F-en great!
posted
Oops sry. I'll clarify. What is the difference between IGG and IGm?
Posts: 59 | From CONNECTICUT | Registered: Sep 2008
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
IgG usually means an old infection and IgM and active infection though it's not as cut and dry with Lyme. I was IgG positive and IgM negative, but clearly had an active infection.
Band 31 IgG doesn't show it up till it's an old infection, so with 2 pluses, you've had it a while.
Band 34 is also very Lyme specific.
You have a very clearly positive WB, congratulations on a clear answer.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
WOW...that's TWO CDC positive tests!! crazy.
I am sure someone will post a more thorough explanation, but be sure to look at Dr. C's western blot explanation up on top of this page.
I can tell you that my IgM band 31 was also ++++!! I have had numbness issues for almost a year now. I don't even mention it anymore as I am used to it, although it has improved a lot since being on antibiotics since May.
They say that band 31 indicates infection for at least a year, but you already know that you were infected for 5 years!!
We have someone else on this board with constant neck pain. Nessa just started treatment and isn't getting much relief either.
You know all my symptoms were neurological until I started antibiotics and THEN I got joint pain.
When do you actually get to see your LLMD and discuss your results....WOW they are really positive!! I wonder if he will increase your Doxy to 400mg/day?
posted
Ok, thanx for the response. I appreciate it. So much for local lab results huh? What a joke.
So it looks like these little demons have been with me for some time now. I did test positive 5 years ago but treated it (atleast I thought) and I distinctively remember being bit by a Tic 1.5 years ago right above my rib cage. I also remember there being a red-like cirle around the site but the little shthead was still partially stuck in me so I was digging at it for 3 days to get it out which I assumed was the reason it was red. Apparently it was the bulls eye.
Oh well. I guess I'll start back on the dxy 2nite. They were kicken my azz but from what you guys are saying it's part of the healing process. I must admit I am a little relieved that there is a reason I have felt like death lately.
I will see my LLMD tomorrow I hope.
When you say my results are really positive how do you mean? I'm a little confused with all the band deciphering?
Posts: 59 | From CONNECTICUT | Registered: Sep 2008
| IP: Logged |
quote:Originally posted by soonermom: When do you actually get to see your LLMD and discuss your results....WOW they are really positive!! I wonder if he will increase your Doxy to 400mg/day?
I am taking 2 doxys in the morning and 2 at night along with Plaquenil. The doxys are 100mg each so I guess I am indeed taking 400mg per day.
Posts: 59 | From CONNECTICUT | Registered: Sep 2008
| IP: Logged |
posted
My LLMD told me that he likes to see those +'s on the WB because it means that your immune system is in good shape and helps your prognosis.
Okay, I see that now about the doxy. 400mg/day is good!!
Let us know how your LLMD appt. goes. A lot of people just get a couple positive bands, so you have both IgM and IgG showing CDC positive....you know I guess it would make sense especially if you were reinfected by that last tick.
(It could also mean that you didn't treat long enough the first time??)..oh well, it doesn't matter. At least you know you have an active (IgM) infection and are getting treatment.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic