I've been on this forum on and off for the last year. My son has been treated by DR J since last August. He was infected last May and ended up in the hospital and on IV Rocephin (prescribed by the traditional ID doctor) six weeks after the initial rash appeared. Anyway, the onset of symptoms was quick and severe for my son. He's doing much better.
So we went camping last weekend and I developed two rash areas that look exactly like the rash my son had last May. I don't want to mess around. I want to nab it while I can...better safe than sorry.
I have an "extra" prescription of Doxy and I've been taking 100 mg 2x/day. My son has his prescriptions of Omnicef, Rifabutin and Flagyll. They are his prescriptions, not mine but I'll take them if necessary and worry about getting the extra refills for him later. I just don't know how much and how often. My son is pulsing his at this point but I don't think that's the best approach for me at this stage.
I have to wait until June 11 to see Dr J's nurse practitioner. I don't want to wait until then to start treatment!
Any ideas of what I should do and could do at this stage? It seems that time is of the essence... Dosages, length of time, etc??
Thanks!
Posted by TF (Member # 14183) on :
First, take a few pictures of the rash. This way, once it fades, you will have the pictures to show the lyme doctor or any other doctor you see in an attempt to get meds.
I don't believe Dr. J's office will treat you. If you are counting on them treating you, I suggest you call them now and find out if you are right or if I am right. I understand he only treats children.
So, assuming they will not treat you there, you need to get yourself some meds. You can start with a walk-in clinic or your PCP. The ideal dose of doxy is 300 mg per day if you start within a week of the bite. A pcp or walk-in clinic won't give you that much. So, supplement with your "extra" doxy prescription. Take that for 30 days.
The doxy treats lyme and erhlichia.
Then, you need a med to treat babesiosis and bartonella. My lyme doc used Bactrim DS on me when I got there within a week of the bite/rash. I don't know where you can get that med, but that is what I suggest. It covers the 2 main coinfections, so then you are totally covered.
You take one 2 times per day for 2 weeks. If you have no symptoms, then stop it. If you have symptoms, then continue it.
That's what my now-famous lyme doctor did when I got to him within a week of the bite and rash.
But, really, you need to get your own lyme doc. This way, if you still have symptoms after 30 days of this treatment, your lyme doc will continue to treat you.
My doc required a CBC and CMP (2 blood tests) the day he saw me (so he could check and be sure my liver, etc. was fine before starting meds), and the same 2 labs two weeks later to check everything again. Also, he had me come back after 30 days of treatment to discuss what had happened.
I had a mild herx on day 4. Other than that, I was fine, so he said I was finished. That was late Aug. 2008 and I have been fine since.
(This all happened to me a few years after getting rid of my lyme disease that I had undiagnosed for at least 10 years. Took 3 years of treatment to get rid of that case of lyme, babs, bart. I had 2 years of lousy treatment, then 1 year of good treatment with the above doc.)
I don't know if you know it or not, but not every bulls eye rash needs treatment. I am quoting from Pam Weintraub's book "Cure Unknown." I also discussed what she says with my lyme doc and he totally agreed. Here's what Pam says:
p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia. A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.
p.343 ``The Borrelia were duly isolated and compared for differences in their genes.
Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn't infect humans and ten caused only a rash. Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain."
Pam then goes on to discuss the implications of this fact:
"The implications are profound. One of the most important is that if just four strains of the twenty cause disseminated infection, then the roster of rash-based studies on the treatment of early Lyme disease, conducted from the 1980s to the present, would have to be reassessed. Take a moment to ponder the simple math: It would be impossible to accept results based on the assumption that 100 percent of Lyme rashes can cause invasive disease when a significant percent cannot. Some of the classic studies claim very high cure rates for early infection; yet if the causative strain were of the rash-only variety, then even orange juice would be a ``cure.'' Are recommended treatment protocols truly curing most of those with early, invasive borreliosis? Or has noise from rash-only strains obscured less rosy results?'' (p. 344)
The trouble, of course, is that there is currently no way for you to know which strain you have. Is it the rash-only strain, or the bad guy? So, every bulls eye needs to be treated like the dangerous strain.
Since I herxed on day 4 of my treatment, my lyme doc said I had "the real thing." My herx was this:
I would go outside and do something, but I would very quickly lose stamina and had to go in the house and lay down. After an hour, I felt fine, so I went out and did a little something again. Same thing--after a few minutes, I was whipped and had to go in the house and lay down. No stamina all day long.
So, just look out for anything unusual like that to get a clue as to whether you got the "real lyme" or the lyme strain that causes the rash only.
Time IS of the essence for you. That's why I say go to a walk-in clinic or whatever you can think of to try and get these meds.
Posted by Rumigirl (Member # 15091) on :
According to Dr. B, and to a number of other LLMD's, the ideal doxy dose in this case is 200 mg taken twice a day. Be aware that
you can get serious sun sensitivity with doxy, so take precautions for that: cover up, use a hat, high level sunscreen, etc. Otherwise, you can get a bad burn that is unlike a regular sunburn.
Posted by Aleigh (Member # 21074) on :
I took photos.
I'm now on 200 mg of doxy twice daily. Was told 3 weeks is enough but I'm going to go for 30 days. Dr J was helpful with the prescription but didn't seem to think the Bactrim is necessary and that co-infections aren't a concern at this stage of treatment for some reason.
Yes, sun exposure is a worry, especially at this time of year. I'm out a lot in the sun on the days I work (Saturdays shooting weddings). No idea how to avoid this!
Thanks all!!
Posted by Lymetoo (Member # 743) on :
I would go for 6-8 wks if it were me. Go to a walk-in clinic while you still have the rash.
Posted by Aleigh (Member # 21074) on :
I've also heard taking it for 6 weeks is a better idea.
3 - 6 weeks. What's the vote?
Posted by Aleigh (Member # 21074) on :
8 weeks of doxy in the summer. Holy god. And I plan to spend most of my summer in Arizona. Fantastic.
Any votes for throwing some flagyl at it, too? I mean, why not? The last time I took flagyll I ended up on a catheter in the hospital for the vomiting.
Posted by blinkie (Member # 14470) on :
If it were me, knowing what I know now...I would trhow the kitchen sink at it. Babesia and bart, if you got those, are not easy to get rid of.
I would at least treat babs. That is what I'm having a hard time getting rid of. Bactrim got me 100% well. Then I relapsed after stopping. I would certainly take a course of bactrim with artemisinin quickly.
Posted by linky123 (Member # 19974) on :
My daughter came home from a birthday party with four ticks attached last year at this time. She developed flu sx almost immediately.
It was Fri nite and we had minocycline in the house, so I made an executive decision and started her on 200mg 2 X day 'til I could get instructions from the llmd. She is 13 and weighs 85 pounds.
As it turned out, he said it was the right thing to do. We live in the south and he prescibed minocycline instead of doxy because it causes less sun sensitivity.
She took the mino for four weeks per his instructions. Sounds like a large dose for a little person, but that's what he advised.
She already had lyme but few sx. I think the mino saved her from getting sicker.
Also, her sx were consistent with RMSF, which is common around here, and can be fatal if not tx promptly. So I think we covered most of the bases with the minocycline.
Good luck.
Posted by richedie (Member # 14689) on :
When I got sick I swore off camping and hiking!
Posted by onbam (Member # 23758) on :
Doxy needs to be 400 mg/day, and you need to treat for 3 months after all symptoms disappear. Call your doctor and tell him you lost the doxy bottle if that's what it will take.
Posted by sixgoofykids (Member # 11141) on :
I would go 6 weeks past symptoms .... so 6 weeks past when the rash or any other symptoms are gone, so that would likely be a minimum of 8 weeks. Dr. B's guidelines say 6 weeks past symptoms for a NEW BITE.
Get more doxy by going to a walk in clinic with the rash. They might not give you enough, but if you already have some, anything they give will be a help.
Posted by tickchick (Member # 25963) on :
why don't you go the a walk in or the ed? if you have the rash they will give you doxy. you don't need to treat yourself right now.
Posted by Aleigh (Member # 21074) on :
Any ideas why Dr J (highly respected LLMD) would prescribe only 3 weeks of doxy if it's not enough and why he wouldn't advise Bactrim or worry over co-infections?
He switched my son from doxy to mino just a couple of weeks ago because of the sun issue. But he didn't prescribe mino for me. Any ideas why?
I have collected so far 84 days of doxy through various prescriptions.
I will call him again, but the issue is that he really isn't my doctor (even though I pay him). He's my son's doctor. I'm just grateful for any bone he'll throw right now.
Suffering from TMI and my biggest question now is why everyone has such differing thoughts on this?
Posted by sixgoofykids (Member # 11141) on :
No idea. I would look at Dr. B's guidelines. Typically they don't worry about coinfections with early treatment because the coinfections take hold due to Lyme's effect on the immune system.
Posted by Aleigh (Member # 21074) on :
And are there enough cases of failed effectiveness with 3 weeks of Doxy to warrant longer treatment (3 months seems like a lot)?
I am all about being safe rather than sorry with this - I'm dealing with Lyme in my family and I'm well aware how ugly it is. I understand long term treatment makes sense if it's chronic or disseminated.
Are there enough people who tried shorter treatment (3 - 6 weeks) immediately after a bite and found that it failed??
Posted by Aleigh (Member # 21074) on :
Also, mino vs doxy? Not looking forward to three months of doxy over the entire summer. But is mino less effective for initial treatment at this stage?
Posted by sixgoofykids (Member # 11141) on :
Doxy is normally used because it hits erlichiosis if you have it.
Three months past symptoms (two is what I'm more familiar with) is for chronic Lyme. Dr. B says for a new infection, six weeks past symptoms. It's in the guidelines. You should read them .... go straight to the source. The section on new bites is not long.