New here just looking for som insight

[Jak259]

So it's been a year now since diagnosed with lyme. Yes I had all the tell tale signs in the beginning. Have been on and off doxycycline. Now I find out my latest blood results havnt even changed. How is this possible after being on antibiotics for nearly a year. Some days I feel better than others. My main thing I have is the muscle and joint pain. I go back to my doc on the 14th. Will this ever go away? Will this just keep getting worse. I'm afraid that eventually I'll be in a wheelchair haha. Sometimes the joint pain gets pretty bad. Just would like to know what I'm in for.  

[JackieCalifornia]

Don't be surprised if the doc says no.  Your doc may be following the IDSA (Infectious Disease Society of America) guidelines, which hold that a few weeks of doxycycline is all that's needed to cure Lyme, regardless of how long you have had it.  Let us know what you hear back, ok?

[Jak259]

Thanks. I'll mention it to my doc to see what he says

[JackieCalifornia]

Good question.  I don't have a scientific definition for it, but a cyst-buster is medication given to dissolve or break through gooey formations (I picture them as being like ... big zits) in areas of the body that create a protective barrier where bacteria may hide.  

Because of that barrier, the human immune system cannot find and kill the bacteria, but a 'cyst-buster' drug can break through the barrier so the immune system can find and kill the bacteria inside the cyst.  

(I think of a cyst as being like a dish of food with plastic wrap on top in the fridge ...  but that might put you off dinner tonight.  Sorry.)

[Jak259]

What is a cyst buster?

[mojogal]

You may need a new Doctor.you could have co-infections which require different abx. Even Doxy requires you to take a cyst Buster with it. If your current doctor hadn't said that, it is time to switch doctors. If there are no other LLMD  near you, you could try an herbal protocol.

[JackieCalifornia]

Welcome back -- but sorry you still need to be here.

The doxycycline may not have been given soon enough -- it works only very soon after the bite, and sometimes you have been bitten long before the bite that was finally noticed.  

The doxy may also not have been the right drug, because while it can work again Lyme, it may not work against other infections the Lyme ticks often bring.  Doxy also has to be taken quite soon after the initial infection, because the Lyme bacteria like to hide in sheltered area such as cartilage, where the antibiotics can't go.  And one more thing:  Going on and off doxy or any other med allows the bacteria to strengthen their resistance to the drugs.  

Given all these factors, I would find a Lyme specialist for a second opinion.  

You say:  "Now I find out my latest blood results havnt even changed. How is this possible after being on antibiotics for nearly a year."  Doxy won't kill anything the ticks bring except Lyme, and bartonella, babesia, Ehrlichiosis and some other bacteria the 'Lyme' tick bring might not be susceptible to the meds that work against Lyme.

If you need help finding another doc for a second opinion, let us know.  One way is to contact ILADS [dot] org for a referral to a Lyme specialist near you.

Let us know how we can help -- best wishes!

[JackieCalifornia]

In your situation, I would find a different MD for a fresh look at your history and symptoms.  Doxycycline works in the very earliest stages of Lyme, but even if you saw a recent tick/tickbite before you were started on Lythe meds, it's quite possible that you could have been bitten and gotten Lyme months or years before that:  the ticks are so tiny that they can be impossible to see, esp. if on the scalp or other places where they just don't show up.  To quote an old saying:  the absence of evidence is not evidence of absence.  

There are not really levels of 'badness' in Lyme:  if you have it, you have it, and it will infect your body and not just where you were bitten.  I would strongly suggest you find a Lyme specialist and get a second opinion.  Lyme is kin to syphilis, which is a terrible and destructive disease that will  not go away by itself.

Please consider getting a second opinion soon, and do so with a Lyme doc.  If you need help finding one near you, let us know.  Best wishes --

[tinaschales1978]

I was just officially diagnosed with positive Lyme yesterday. My doctor put me on dixy 100 mg for 21 days and I don't feel like this is a high enough dose. I have asthma and it has been a lot worse since I got this Lyme, I have had confusion, lethargy, weakness, fatigue, cough, nausea/vomiting, neck stiffness and cracking, joints hurt, diarrhea. I had started taking doxy last week before the positive came back just as a precaution but after taking for 2 days I developed a UTI so I stopped taking them and the UTI went away but now that I have the positive result I have started taking the doxy again. I wonder how bad my Lyme is?