posted
I just finished a 3 week 100mg 2x daily doxycycline for lyme yesterday. I was diagnosed by my general practitioner and I think I am pretty sure of when I was bitten by a tick (about a month and a half before treatment). I had no rash but had a horrible neck pain and a strange pain behind my eye that felt almost like someone was twisting the musles behind my eye. Also I was extremely irritable and in a constant fog.
During the first week of treatment I felt worse than before. Just downright icky. Then progressively I felt better every day. I actually didn't know how bad I really felt until I started feeling better. The problem now is that I still feel foggy and my neck still hurts. Is it "normal" to still feel aches and pains for some time after finishing the antibiotics? Or I am I not cured. I do believe that the disease was caught early-on but with Lyme I guess you can never be sure. I am going to make an appt with an LLMD suggested by some members here because I am honestly scared to death that this will affect me for the rest of my life. I have been afraid of ticks and Lyme since I learned about them both. I am a city girl and never knew what a tick was until I met my husband (he grew up in a woodsy more country-like area). I bow to all of you who have continued to fight this horrible disease.
Posts: 193 | From New Jersey | Registered: Oct 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Phobic,
It is a GREAT idea what you are doing, seeing an llmd as soon as you can for evaluation.
As you know (all too well probably from reading about tick borne diseases), ticks can carry other bacteria and viruses that like lyme, are better treated early.
Also, your 200 mg/day doxy for 3 weeks might not have been sufficient. It sounds like that is a possibility.
I am not a doctor, but someone who has had to become knowledgeable about lyme & it's fellow travelers from experience!
Nagging neck pain sounds like a symptom to me, and most lyme literate doctors treat for some time after symptoms end.
Take care and I hope you see an llmd soon.
Posts: 2557 | From home | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My neck pain has been from babesia (co-infection).
Agreed that 200mg a day is not enough.
Also need to take it longer than 3 weeks.
This is your opportunity to get it now.
Print out the ILAD's guidelines or Dr. B's guidelines for treatment.
Try to find a LLMD in your area (post in Seeking a Doctor section).
See if your doc is open to at least 300mg a day for a few more weeks.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Thanks Vermont. Its really a scary thing to deal with. Am I ok? Will it come back? How will it affect me next? It really grosses me out knowing that these things (the spirochetes) are in me too!
What gets me the most is that I couldn't have taken more precautions. Friend have actually joked with me about expecting to see my kids in giant bubbles on the soccer field. The day I think the stinking tick got me I had 40% DEET off on me, pants tucked into socks, etc. but still it got me. I worry more about my kids and gave them a thorough search day and night for a week straight because I had found some on my daughter when we left the park we were at. Its sad that I feel like I can't enjoy the beautiful parks and nature that Monmouth County NJ has to offer because of the awful disease. Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
Thanks Geneal. Definately going to do it!
Posts: 193 | From New Jersey | Registered: Oct 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Phobic,
I know...I am far more of an urban person than I used to be!
Listen, I meant to add --
Do not worry, you caught it relatively early! That is the really good news.
(Unlike many of us here on lymenet, that went for very long time of increasing illness before being diagnosed.)
If you get proper treatment NOW, you stand a great chance of being spared all the pain and suffering of chronic lyme! The odds are in your favor, to my knowledge, if you act quickly!
Good luck, find a great doctor, and knock it out of your system now.
By the way; the scientists who do field research on ticks in CT say that the gold standard in tick prevention is spraying pyrethrins (sp?) on clothing. They say that DEET is not effective.
Do a search here on pyrethrens (not sure how to spell it). It kills ticks on contact, and it stays in the clothing for several washings.
Posts: 2557 | From home | Registered: Aug 2006
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posted
You know Vermont I was just telling my husband how unbelievable it is that so many people have suffered because they have gone undiagnosed for so many years. I definately KNOW that I am one of the lucky few who have gotten a positive Lyme result so soon after infection. I am calling the LLMD dr. tomorrow and scheduling an appt. I give my GP credit for treating me aas aggressively as she thought appropriate (she started me on the antibiotics before the test results were back even without a rash) but I just don't feel "right " yet. I have called her office with questions about Lyme treatment and unfortunately they have not called back with any answers. That is what brought me here. I am so glad I found this site!
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
You're doing the right thing, seeing an LLMD. It does sound like you still have lyme, and that you were under-treated.
You may get a shock and find out that you have to wait a few months to see a LLMD, and that it's expensive, and they may not take insurance.
A couple of thoughts - things I would do differently had I known.
First, get a few recommendations from lymenet, and then call them and ask a few questions. But don't base your decision primarily on price, or earliest possible appointment. I did this, and the first LLMD I went to was a complete bust. Second time was the charm. It's sometimes hard to judge in advance, but at least eventually getting the right doctor is the key.
Second, while you wait, don't get confused. You may start getting more symptoms, and see your GP again. He/she will predictably send you off to various specialists, none of whom are ever wrong. But they, not being lyme literate, will attempt to persuade you that you don't have, can't have lyme disease. That 3 weeks of abx completely killed the bug, and that you have "post-lyme" syndrome. Baloney.
It sounds like you caught it early, but you never know. I was bit last July, and by mid August was starting to have serious neuro complications, which among other things, makes one very self-doubting and susceptible to "post-lyme" specialists who say to do nothing, just wait 18 months. So now, here I am with chronic lyme.
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
I hate to spoil your party, but I caught my infection early as well...did the same three week Doxy nonsense as you...
Well....over 14 years later I still am sick. Nasty Brain SPECT scan, oligoclonal antibodies in my CSF...
Your neck pain...try having it for YEARS!!!!
You need to see a agressive LLMD (Lyme Literate MD) who will put you on IV...do not accept anything less. The neck pain is very difficult to eradicate, and the cause could be many co-infections as well as just Borrelia.
HIT IT HARD NOW...or become me.
YOU need to be strong and demand an aggressive course...or a typical MD will just cave.
I wish you good luck!
Peace, Love and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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adamm
Unregistered
posted
yep--a month of doxy (@200 mg/day--half of the
bacteriocidal dose) administered starting right the
my bite completely failed me as well. Some speculate that the
folks who recover with such treatment have rare mutant strains that,
even without treatment, can only produce self-limiting infection.
There is one more step you need to take, btw:
You need to do whatever it
takes to procure enough doxy to enable yourself to treat with
400/mg day until you see your LLMD. I hate to say it, but
posted
started 30 days of doxy when found bull's eye rash (about a foot wide) on my back. No one questioned it was lyme it was so classic. Had neuro symptoms within the first couple weeks. My condition didn't improve, actually it began to get worse. 16 docs 1 1/2 years later I found LLND tested really positive for babesia. Previously diagnosed with post lyme syndrome, chronic fatigue syndrome with fibromyalgia, bi-polar disorder...etc..even with photo of classic rash, the specialists said 30 days should have killed the lyme. I agree, find an LLMD quickly and make sure there are no co-infections. Get on doxy, eat well, and rest. I have had three friends and my niece catch lyme early and are fully recovered, with treatments ranging from 1 month to three months. Everyone is different. Good Luck!
-------------------- -Love and Gratitude Posts: 69 | From another planet far far away | Registered: Oct 2008
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posted
Thank you all for all of your input. I called the LLMD today and I have an appt in mid November (earliest they had an opening). So I went back to my GP and she put me on another 2 weeks of doxy since I am still symptomatic. She also said if I am still feeling symptoms after the 2 weeks she will keep up with the doxy until I get to see the LLMD. She also wants me to see a neurologist in the meantime. She agrees that Lyme is very tricky and wants to make sure I am recovering. The only thing that bothered me is that I mentioned a possible co-infection and she did not order bloodwork. Unfortunately I couldn't sit there any longer to discuss it because my kids were getting home from school. When she calls with the neurologist info on Monday I will ask again about testing for co-infection as well.
I am glad she is not dismissing this, but I look forward to seeing the LLMD in November.
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
Forgot to add before...my gp wrote script for doxy 100mg 2x/day, same as before. When I picked up the prescription they gave me Doryx(sp?) the name brand doxy and it was $204 for 2 weeks worth. I freaked out and called the dr. SHe in turn called the pharmacy and told them to give me the same I had last time. Anyway, long story short, I was refunded 100% of the $204 and they are not allowed to take back the meds so I now have another 2 weeks of antibiotics. Luckily this will last me until right before my LLMD appt.
Posts: 193 | From New Jersey | Registered: Oct 2008
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adamm
Unregistered
posted
Lovingattitude--same deal here: got encephalitis (which has only gotten worse over the past year and a half) during initial doxy treatment.
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Dornyx is a generic doxy, and has less side effects.
Remember not to ever go in the sun with doxy as very little exposure can give you really serious burns, especially on hands, feet & knuckles. You cant SEE the burn, but it happens.
Also, do not take doxy and lie down for at least 1/2 hour or you can do serious damage to your esophogus. Also no dairy with doxy. TAKE IT WITH FOOD or you may experience serious stomach aches and digestive problems.
These warnings should have come with your packaging or check with your pharmacist.
While you are on abx, if your doctor hasnt already recommended, take a refrigerated, strong probiotic, also called acidophilus.
Renew Life Ultra Flora critical care (50 BILLION/10 STRAIN is a reliable brand. I take multiple probiotics *high culture/high strain which need refrigeration.
My LLMD sold me a brand called Iflora professional strength which has 20 billion cultures and 15 strains. I try to take between 50-100 billion periodically during the day alternating several hours away from the abx and before bed.
You can check with your local health food store for a really good probiotic. It is a MUST to replace all the good bacteria that the antibiotics are destroying or you can wind up with serious yeast problems and gut problems.
Good Luck!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Is there any chance your GP would give you the normal LLMD dose- 200 mg twice a day instead of 100 mg twice a day? It's really important to use high enough doses.
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