posted
Wed. I started having severe left sided pain in the area of the ovary so thought it was my cyst. This is the worse pain I have ever had but it eased up enough that I could tolerate it but then started moving up my side. Called my dr and she said to go to ER.
Did blood work(fine) and x-ray which showed air or something in my colon which worried the dr. He sent me home but was to come back if I started vomiting and then to come see him the next day.
Anyway, in ER I told him I had just been dx'd with lyme and he wants to know how and a bunch of questions. He didn't believe me.
The next day I took my results from Igenex and gave them to him and he was still skeptical. He said there and a lot of false positives. I didn't argue with him. Anyway, I had passed out that morning and almost again on the way to his office.
When I got there I was pretty sick and they had to get a wheelchair for me. He sends me to the hospital for a cat scan of my stomach and it was all negative. He comes in the room and told us that and then says we need to start treating you for lyme.
What a big turn around. He said the severe pain was from lyme and the passing out(POTS) was, too. Could the pain be from lyme?? I know it can cause POTS.
So he puts me on 200mg doxy a day and from what I've read that's not nearly enough. So what should I do?? I'm going to see an LLMD but not till we get my hubbys' and daughter's lyme test back. Should I increase it on my own or not take it or what??
Then I told my reg. dr what he put me on and she started cursing saying that wasn't the right thing and she would have put me on rocephin shots for a month, one a day. What on earth should I do? Should I just stop the doxy and wait till I can see the LLMD. I just thought I had already wasted enough time so thought I would start on something.
Especially since I don't know how long it might be before I can see the LLMD. Also, I have been sick for 15 years so I guess a little while longer wouldn't hurt. I just need some advice here. I'm so confused. Any advice will be appreciated.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Wow you've had quite a week.
If it were me - I'd start treatment right away. What do you mean, you're waiting for your huband's and daughter's tests? What has that got to do with the price of tea in China?
You're sick and you need treatment. Take the Doxy you've been given and get to an LLMD ASAP. No more pussyfooting around. You've got POTS - things are getting out of hand.
Just one stupid question - if your regular dr knows so much about Lyme, why the heck hadn't she started you on anything before now? Let me guess - she didn't believe the test results from IgeneX because you've had negatives from insurance labs...
Give the orals a try - don't forget to take Milk Thistle and Magnesium and the many other things you've read here. You will feel like crap, no doubt about it, but you need to address this now - not later.
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Since you probably won't want to stay with the doc who wants to give the rocephin shots, I'd grab the doxy and start it right away. If you can find a way to take more (400 mg.?)do so!
Interesting that the doc had a turn around! Maybe some are willing to unlearn what they've been taught about lyme!
Wishing you and your family well...you've been through a lot. Doggone ticks!
Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Ditto what everyone else said about treatment.
As far as your stomach/cyst problem.......I had the same sort of experience just about a year ago. I had horrible pain on my right side, lower abdomen. I went to the ER (I never do that because I HATE having to go through the whole Lyme thing) but it was nightime and I'd had a D&C a few weeks earlier and my doctor told me to go, as he thought I might have an infection. I was running a fever and the pain was excruciating. The ER doc recognized my pain finally and gave me something for that. I had my appendics out years ago, so we knew it wasn't that.Bloodwork was negative. They did an ultrasound and finally decided I had a ruptured ovarian cyst. They sent me home on pain meds. I saw my gynecologist 2 days later and he examined me, looked at the test results from the ER and said I absolutely did not have a ruptured ovarian cyst. He'd just done the D&C. The pain hasn't returned..............who knows..............I know it had something to do with Lyme. Hang in there.
Posts: 93 | From New Jersey | Registered: Oct 2000
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posted
Thanks for the replies. I really have to defend my reg. dr here. She wanted right off to send me to an Infectious Disease Dr but I refused.
I told her I was going to see an LLMD. The reason I'm waiting is no matter which one I see it will be a long trip so I'm waiting for hubby and daughter's test just in case they need to go also.
Also she is only a nurse practitioner but she has done more for me than any dr I've seen.She drew all our blood for the tests for free and she will do anything she can to help me. I feel fortunate to have her on my side.
Now back to my question, I want to know if taking 200mg of doxy is going to do anything or is it a waste of time?
I go back to see the ER dr next week but I don't know how he will feel if I go in there and tell him that isn't enough. How can I handle this? I also wasn't sure if doxy was what I needed to start with so I have that answered now. Thanks.
I'm sorry if I sound stupid but I have had an emotional week and that's just not me. I can read about this stuff but I just can't retain anything.
I used to be pretty smart(or so I thought) and now I have trouble just reading things and making sense of it.I even have trouble posting here and that's why I don't post much but I read everyday. I sure hope this gets better with treatment.
Thanks so much for your help. I don't know where I would be without your help.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
actually taking the 200mg of doxy can be worse than none at all..what it does is kill off the weak spirochetes leaving behind the stronger ones to multiply..it can also make you resistant to the drug doxy which will mean it will be ineffective at a later date...
the dosage amount they recommend is 300-600mg per day in order to kill ALL the keets...weak adn strong....200mg may do you some damage inthe long run.
just my opinion.
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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That makes sense to me. I will take an extra one a day and when I run out I will have the nurse practioner write me a prescription for it and she will.
Anyone else have an opinion on this? Should I take even more than 300mg since I have had this 15 years or stick with that till I can see an LLMD?
posted
For me 200mgs of Doxy was way better than no Doxy. When I stopped it for 2 days my symptoms got totally out of control. I took Doxy for 4 months before switching to high dose tetracycline which is working better.
The theory about weak & strong keets is new to me. I'm not sure it makes sense, where did it come from?
Even 200mgs of doxy can take a while to get used to so I suggest starting with that and seeing how you feel. Be sure to take it with a LOT of water preferably after a meal. Do not take antacids, calcium or iron supplements or dairy products within 2-3 hours.
While on Doxy: Stay out of the sun (wear hats, scarfs, sunglasses etc. Start taking probiotics (not within 2 hours of doxy), Go on anti yeast diet. I learned about all these things here on Lymenet.
Take this all seriously. Start treatment ASAP. Best of luck
LLMD started me on doxy 200/day for 3 days; 2 days off, then begin biaxin xl 1000/DAY FOR 3 days; 2 days off, and then begin doxy again. Been on this 5 months using this pulsing.
4 months ago LLMD put me on benicar 20 mg, half am/pm; was increased to 40 mg, half am/pm.
Doxy really affects your eys. My eyes were super sensitive before; now 200% worse. Read all about NOIR sunglasses below. They have really helped me too, but you'll herx from them too since you've eliminated extra sun light thru your ees. Betty G., Iowa
Check their links/files for wonderful info galore especially the link of the female DR. who has a 20 page detailed app showing specific things of what she can NOT do in order to do her job! It's one to print & then use for your own situation.
To fibro/CFS members, I just came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...FMS, CFS, IBS, ALS, etc. Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001. http://www.geocities.com/lymeart3/misdiag-links.html#disease
Posts: 1 | From US | Registered: Aug 2015
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Lyddie
Unregistered
posted
To save on pills, and get a gentle start, you could take just 200mg at night, for 5 days or so. Our LLMD usually starts us that way. Then go up to 200mg in the am and 200mg in the pm. Maybe that will give you time to get in to see an LLMD.
I could be wrong, but I believe it would be harmful if you took it for only a few weeks, and then stopped.Try to stay on abx until you see the right doctor.
I would take the anitbiotics they are offering. Then maybe for your next appointment you can bring in some info to back up that you need something stronger or more doxy. Look up Dr. Burrascano on the web. He has treatment protocols that you can print(I would just print a few not overwhelm your DR.)and bring in to support this. Don't wait. Nip it in the bud! But at least you'll be started. Then (in my opinion) the dr. would be more likely to increase the dosing you have.
SO WEIRD .... I had the right sided pain for years and years before being diagnosed with lyme. After IV Rocephin it has never happened since. I feel for you though. I know it's hard feeling pain and not having a clear picture of how to ge rid of it, but hang in there. And DON"T be passive about it. Pulling for you........ daniella
posted
Thanks everyone for the help. I think I will take the 200mg and talk to him next Thursday when I go back to see him.
I will print off some info from Dr. B. Maybe he will read it. I just hope he isn't one of these drs that think they know best. He did have a change of heart about believing that I have lyme so I have hope. I really like him but I hope I can still say that after Thursday.
posted
Well, maybe you can educate the ER doc and maybe not. If it were me, I might just skip the repeat visit with the ER doc and do the pills the way that has been suggested above. Start low, see how you react (some people react strongly to doxy) and then ramp up, getting another prescription from your NP when you need it.
Plus, if you have had this a long time, ramping up might avoid a super herx.
As you can tell, there are various opinions on the subject and not everyone reacts the same way.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks Lou but what do you mean ramping up might avoid a super herx? Do you mean the more I take the less the herx? I just don't understand how all this works.
The reason I'm going back to the ER doc is because he is the only dr that has impressed me in a very long time. I think he might come in handy later on.
He isn't a know it all and the fact that he knows about LLMD's is a plus. I mentioned seeing the LLMD in Springfield and he said I would feel more comfortable sending you to one in an endemic area. He named the state but with the brain fog I can't remember which.
It was one of the M states. Minnesota or MA. and I could be totally wrong. Anyway, I think he has my best interest at heart but so does my NP. I feel fortunate to have 2 at this point. It's so hard to find even one sometimes.
I have felt very alone in my illness during these 15 years and this is the first time I have really had hope.
posted
Ramping up means that you start low and work your way up to the desired/effective dose. For people with long-time lyme, sometimes the initial herx can be pretty intense. But it varies a lot, depending on the germ load and probably on what strains you have, etc. Lots of unknowns here.
If you trust this ER guy, well, go with your instincts. It would be interesting to know who he would suggest that you go see in the way of a doc in an endemic state. Knowing who that was.....that would be a major clue in knowing his attitude and knowledge about Lyme. See if you can get a name, without committing yourself one way or another to going to such a person. It might also be better not to use the name of LLMDs to him, especially anyone you plan to see or are seeing, until you know more about his attiude.
There aren't many LLMDs in academic settings unfortunately, and the major medical institutions are doing a bad job with this disease, so that in itself makes me wonder about your ER doc's recommendation.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks again Lou, I will see who he recommends. He may not even know the name of a dr but just wanted me to go to one in an endemic state. He said they treat 1000's of cases.
I got the feeling that he doesn't know much about lyme but he could have said the tests all came back negative and there's nothing wrong with you or there's nothing we can do. But instead he did know what lyme can do.
No matter what he does for me I'm still going to an LLMD and it may not be the one he wants but I won't tell him that at this point. Dr. C is the closest one to me so he will probably be the one I see.
posted
I think the "more is better" approach is a risky road to go down. I would suggest taking what you were prescribed and calling your Dr with your concerns. Many Drs will modify your dosage over the phone if they feel it is appropriate.
Posts: 133 | From Rocheser, MN, USA | Registered: Dec 2004
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