I am new to this website and have not yet been diagnosed with Lyme, but have a suspected bite with a whole host of Lyme symptoms.
I have read that symptoms can overlap each other and present "out of order" sometimes in the stages.
Does anyone have anything thoughts on this?
Posted by Keebler (Member # 12673) on :
- Sorry to hear of this. Hopefully, you can find the right care right away.
You ask: "How quickly can Lyme cause neuro symptoms?"
Immediately, in some cases. In others, it can be years before neuro symptoms appear.
We have lots of thoughts and so many articles. But WHY do you ask? What do you need to proceed? First things first so that you have the tools to proceed before all the articles in the world get tossed your way.
Do you have an appointment scheduled with an ILADS educated LLMD?
Have you connected with a support group in your area?
I'm assuming you've read a bit so don't know what articles you've seen or what direction you might be seeking.
I'm pretty action oriented, so I start there. Thoughts can entangle us but the most important action is to find a good LLMD for proper assessment not just of lyme but of other tick-borne infections or other chronic stealth infections of a similar nature of which most MDs are not familiar.
Rather than thoughts on the topic, I'm all for first helping you find a good doctor.
Backing up:
* Is your bite current? Right now? Do you have a rash of ANY type? If so, take photos.
Not all ticks carry lyme. Most do, though and many other infections, besides. If you were bitten by an infected tick EARLY treatment is the very best thing to help prevent problems. However, most doctors will not treat beyond a short time.
A minimum of 30 weeks is suggested by most LLMDs (Lyme Literate Medical Doctor). A very complex treatment approach is needed. One drug will not work, unless you happen to be a miracle case - or lucky enough to have a strain that is not as serious as others.
* Do you still have the tick? If so, save it in a GLASS jar and put in the freezer. Some can chew through plastic bags.
Have you seen a doctor yet?
* You may want to get yourself to URGENT CARE (but be prepared for them not to know much about lyme or other tick-borne infections). Still, the sooner you can get some sort of treatment, even doxycycline, the better. Hours matter, early on.
By chance, if you are without a pancreas, you should be assessed seriously for babesia, another tick infection that can be fatal for those who have had their pancreas removed. Treatment for babesia is totally different than that for lyme.
Then you can sort out the rest and find a good lyme literate MD.
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Posted by adfyapdsfyuapodsuif (Member # 24181) on :
quote:Originally posted by Keebler: One drug will not work, unless you happen to be a miracle case - or lucky enough to have a strain that is not as serious as others -
i are currently with a well recommended llmd in columbia MO and he has me on a single abx regiment. people dont fair well on a single treatment? Posted by Lymetoo (Member # 743) on :
That is the current mantra on this board. I can testify to the fact that you CAN get well with this dr. I did.
Posted by Pinelady (Member # 18524) on :
I think neuro patients fare very well to begin on single tx.
Most get very sick before they get better. So with
that in mind you may be like a lot of folks who
take it low and slow in the beginning.
As you could end up like a fellow I know who was
on IV for first 3 mths. with IDS and they almost
killed him. But everyone is different. Your body
will tell you what you can tolerate and what it can't.
Posted by Keebler (Member # 12673) on :
- adfyapdsfyuapodsuif,
You are in excellent hands.
You are seeing a top doctor. He does rotate, too, when and if needed. He knows what he is doing and he assesses each patient individually, all along the way.
As time moves forward, you may be on different meds, but you may also do very well on just doxycycline. Much depends on the patient and all they deal with. ILADS and most LLMDs employ a combination or rotation approach. But, it also depends solely on the patient. You may be able to tolerate only one drug at at time, too.
You can have a conversation as time goes on as to what he considers helpful to address cyst form, etc.
The thing is that you your LLMD is excellent - he is ILADS educated so, he has the knowledge of when to use what techniques. Most MDs who are not ILADS educated just think two weeks of doxy at a low will do it.
The key is finding a doctor who is very well educated in all the tick borne infections. From there, it's much easier.
Another example of the exception to the rule are people who have done well over at The Road Back Foundation with minocycline being the single substance of choice. They may not all have lyme but my guess is that some have. -
Posted by alicat (Member # 24264) on :
Thank you, Keebler for your reply and your willingness to help! The spot that was in question was right above my ear around my hair line. I actually thought it was a pimple or infected hair, which I don't ever really get. I showed it to my husband who said it just looked red.
I have no recall of getting bit by a tick. We do have a lot of warm weather here in AR during Fall/Winter. We are outside a lot when it is nice. So, unfortunately, I do not have a tick for evidence.
It was sore and red, but passed after several days. (I never thought to take a picture, it is hard to see in my hair.) The day I really noticed it I had a very bad headache and light sensitivity. Followed by a few days later with some tingling, and 4 days worth of aweful flu-like symptoms.
I really didn't think much about it until the neuro doctor I saw asked if I had been bitten by something. (He did do a Lyme test, came back negative)
(The neuro visit came after two visits to the FP doctor and 3 1/2 weeks after onset of symptoms.
Still having so many symptoms that resemble Lyme which is what led me here. Just since joining I have come across two names of doctors that are probably the closest to me.
The people I have talked to have been wonderful and so helpful. I am hoping that I can see someone fairly quickly.
Any other thoughts or suggestions would be so appreciated. Thanks again.
Posted by Keebler (Member # 12673) on :
- Lyme tests often are negative. That does not rule out lyme.
I think you need to be assessed by a good LLMD as soon as possible. Your symptoms certainly warrant that. How far are you from the Missouri state line?
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Posted by alicat (Member # 24264) on :
I am about 3 1/2 from Branson.
Posted by Keebler (Member # 12673) on :
- I just sent you a PM for an excellent LLMD in Central Missouri. As there may be an LLMD closer to you, you should also post in:
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