Day 48 into treatment

I am just posting an update on my condition. I am on day 48 of treatment with being diagnosed with Neuroborreliosis (Neurological Lyme Disease). I don't feel the slightest bit better just yet but I am still in a better place mentally knowing that after 13 months of horrible scary symptoms I finally have a diagnosis that I am being treated for. I still have a lot of tightness in my neck and throat along with being very off balance when symptoms occur pretty hard. Those are just the main ones that bother me the most. I still have several other symptoms. How long has it taken for any of u on here to start feeling better once starting treatment??? Thanks and wish u all the best!

Possible Lyme,

It is different for everyone. The key is to find a combo of meds that works for you. You may have to change your meds from time to time if you're not seeing progress or if you plateau.

What have you tried so far? Are you treating any co-infections.

I was making some progress. Then, I hit a roadblock. So, I'm working on changing things up. We have to keep trying. We WILL get better!

I am currently taking Zithromax 250mg once daily and Diflucan once a week for the yeast. I did test positive for Strep. That's the only other infection I tested positive for. I go back for a follow up with LLMD July 16. Maybe I will see a change by then or he will have a plan to try something different. I still feel like I did a year ago. What's really weird is most of my problem is in my neck and throat..? Do u think that may b the lymph nodes? It seems like my throat or neck is what is obstructing my breathing. I dunno...

Possible Lyme 11,

I have stiffness and pain in my neck, which my doctor and I think is probably Lyme and/or Babesia. However, your symptoms could be something else.

Have you had your thyroid checked? Also, have you had an MRI of your neck? You should discuss this breathing issue with your doc. If it is bad, you can call prior to your appointment.

Many LLMD's will change things up if a patient does not progress on a certain treatment plan. You should discuss this with your doctor during your appointment. It does not sound like you're improving. Sometimes, changes can be very slow and subtle. Maybe you need to switch things up.

I hope that you get some answers and see some progress soon. Hang in there...I hope your appointment goes well. By the time your appointment rolls around, you should probably have seen some kind of response, even if it is not ground breaking.

Let us know how you're doing. We can help you through this.

I'm sorry Possible Lyme 11. You have been through a lot. If you can manage, you should try to find a new primary care doctor. It is not acceptable for a doctor to deny you a biopsy and treat you that way. It's unfortunate that we have to be our own advocates, but we do.

I did not listen to the doctors who told me I could not have possibly gotten Lyme in my area. My first primary was so bad. He had no idea what was wrong. After having to do research to figure it out, I suggested a possibility of Bartonella. He became irate. So, I found a new doctor. Then, I still had to fight for myself.

You can email your local Lyme support group to find out if they know of any Lyme friendly doctors. At least find someone who is supportive and helps you. I have severe anxiety too. It's hard enough to drag ourselves to see these doctors. It's not easy. Hang in there!

I hope you can get the treatment you need to start showing improvements soon. Keep us posted. :)

It took me 60 - 90 days to notice much other than herxing the first time I healed. When I got reinfected last summer, it only took about 30 days to begin to feel better - but that is likely the difference between having been infected for 40 yrs and being infected for only 3 months.

Be sure that you are doing enough detoxing and staying well hydrated to help flush those toxins out too!

That's likely exercise intolerance. Wow, so sorry. Just understand that it's going to do this to you since you can't just not work. Because of this, it could take you longer to feel decent again though, so do everything you can for detoxing and rest as much as you can.

I just quickly re-read your posts - you are taking 250 mg of Zithromax daily? Is that the only antibiotic?

That is a low dose - are you taking another antibiotic with it?

Maybe your Dr is starting you off on low dose and is planning to increase and maybe add another antibiotic at your next appt?

Starting out slow and on low doses is a good thing, but you need to be sure that your LLMD has plans on either raising that dose or adding in another abx soon.

Whether or not you work is between you and your doctor - but realize that it could hamper your recovery. And what's worse? Staying sick like this or using some programs that come from the gov't to help you stay afloat until you are healed enough to get back to work? Something to think on.

I went and saw my LLMD on the 16th. He said my throat and tongue looked great and that he could not feel my lymph nodes in my neck. He says he has seen a lot of improvement but I feel no better than I did a year ago... I am on day 72 of Zithromax 250mg. When I finish my 90 days he is switching me to Minocycline 100mg. I told him that I am not feeling any better and he tells me he sees major improvement. He said if I have not seen even the slightest improvement just yet then there is a. Hence that my symptoms are not Lyme related. He prescribed me Rispersal 0.25mg to take before bed for dysautonomia..? He said I will know the next morning after a few days if the Risperdal helps. It has not helped. I am currently bout to meet with a new primary doctor who is well know to go above and beyond for his patients. Some people even described his as a doctor House! Lol. Wouldn't that be great!? Ok I was just updating on my status. Still keeping my head up high and will never,never,ever give up!! :)