posted
i'm honestly really scared and don't know who to talk to.
I have been on doxycycline for two months because I have tingling in my legs and sometimes in my arms, that doesn't seem to be going away. I am also very itchy and sometimes have little shooting pains in random parts of my body.
All of these symptoms are very subtle and more annoying than painful, but I am still worried about them. Like I said, I've been on doxycycline for 2 months and feel almost normal except for those things I mentioned.
I have no fever, no intense fatigue etc. Regular non lyme literate doctors keep telling me I don't have lyme. They are in the process of running tests, but say my symptoms don't match. I don't see how this is possible considering I had a positive lyme test.
However, I also went to an llmd and he prescribed me two different antibiotics and seems to think it's better to err on the side of caution. I am completetly torn in terms of what to do!
If I stay on the doxy ( which isn't making the tingling go away) my condition may worse. But if I take the antibiotics, they may do long term damage. I'm so scared and don't know who to trust or believe. Can someone please give me some advice?
Also: I have never had a herx reaction on doxy. Does that mean anything?
(breaking up the post for easier reading for many here)
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
What dosage have you been taking of the doxy for the last 2 mths?
So you have a positive Lyme test and the docs don't think your symptoms lead to a clinical dx?
What 2 antibiotics did the LLMD rx for you to take?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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quote:Originally posted by Lymetoo: Could you post which test showed positive? If it's a Western Blot, please post which bands showed up?
Do YOU think you have Lyme?
I'm sorry. My doctor never gave me the paperwork, so I don't know which test. I just know it was positive.
Posts: 20 | From Pittsburgh PA. | Registered: Jul 2018
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posted
It would be helpful to you to know for sure. If there are virtually no symptoms, I personally would not treat it.
I would treat a recent bite, just in case.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I think we all knew you were going to say "100mg doxy twice a day".
That's the typical loser dosage that keeps folks ill with Lyme & co symptoms and what illiterate docs still continue to rx.
Early on set symptoms patients should have 400-600mg of doxy for at least 30-60 days. If symptoms are still present......
Additional higher doses of antibiotics should continue which might include switching up the antibiotics to another type or doing more than one type abx in combo.
You need a lyme literate doctor. You are scared and we all know that fear. It's your body and it is in trouble and you know it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Mike, as a longtime Lyme patient, I do know what you need to do!
You said you have a positive Lyme test. Test results always go back to the doctor. Can you get a copy of it?
As others are noting above, 100mg doxy is too weak. It's what nonLyme doctors prescribe. You need to see a real Lyme-treating doctor who will work with you on the proper strength of medication plus do bloodwork, put you on supplements, etc.
You can make a post in Seeking A Doctor for an LLMD - Lyme-literate medical doctor - in NY - put NY in the heading if that's where you want to go.
Lyme can start slowly and spread. The symptoms you're describing are the early dissemination stage - ie, it's spreading. You don't want it to get worse!!
Look at it this way - you came here to ask, so we're able to steer you to where you need to go - ie to a real Lyme doctor. If you had not asked, you would have gotten worse. So, I salute you for being a person who is pro-active. That's a good thing, Mike - much better than trying to ignore what's going on.
Lyme may be a life sentence, but, you know, there are lots of bad things that can happen to people in life. If we manage this one early on, we can still function.
Posts: 13171 | From San Francisco | Registered: May 2006
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