Dr. J treatment length

I haven't been treated by D. J. Usually there is some improvement after 5-6 months...What about other symptoms besides the fatigue and insomnia? Any improvement in those?

What does Dr. J. say about the lack of progress?


I know i have 'lost' a lot of symptoms...but my worst one is still with me...and a few other stubborn ones...sometimes it takes trial and error to find what works.

Do you have an appointment with him soon - so you can discuss your concerns?

I'll be seeing a NP in his office in another month. I'll let them know that I haven't seen much improvement. Since recovery is so slow I wasn't sure if it was cause for concern.

Responded

Have you treated for Bart and/or Babs yet? Until they are both addressed progress will be difficult.

Tickbite, I am currently being treated for babs and bart. I was treated for a full year for just babesia (mepron and zithromax) before I saw Dr. J. I wanted to add in cryptolepsis to the mix for gabs treatment but Dr. J said not to add it.

It looks like you are getting plenty of private replies. I will note that DS had horrible chronic fatigue the first 6 months of treatment at JC with the pediatric person. As someone else noted, slow and steady it is with this. I gave him various herbs/tictures/supplements beyond their protocal (ran by them first) to see if we could alleviate it and did lots of detox but nothing really worked super well.

It was only last summer when things started turning around but then in late fall, after he was starting to recover from mycoplasma and was not actively infected, he was reinfected so this winter progress was slow again after having picked up a lot in the summer and fall. We hope to see progress this summer again.

Dr. J likes to figure out some kind of relief especially with the symptoms you mention anxiety and - insomnia - sleep is hugely important for healing according to Dr. J. Have you called and told them you aren't getting relief? I would do so if you don't have an appointment soon.

Hope this helps. Keep up probiotics and detoxing too!

@ Fronton - DS has restarted babesia treatment too, even though his myco is still high after last blood work. We too are sort at the final chipping away part as well. Good luck!!

Lvg123, I find they can often tell you what drugs their patients find helpful so if Dr. J not aware of your current meds prescribed by your other doctors - you should let them know and see what they suggest. They almost always have a few things up their sleeves for DS - but he doesn't have the symptoms you do right now.

I'm so sorry you have the crushing exhaustion. The fatigue is so debilitating. DS would literally only walk across hall, use toilet and collapse back into bed last winter. It was like a ton of bricks pinning him down. Now 1.5 years into it he is sick like that only about 1 day a week, but he can now come upstairs and even come get food 1-2 times during that sick day so it's huge progress. He seems better in sunny summer weather so he may have to move away from here as he becomes an adult. We noticed he was much better over the summer but he was also able to sleep/rest more then too.

Best wishes-hoping you hit 6 months and start to notice a turn around too!

Yancync best wishes to you and your DS!

I have been seeing Dr. J for nearly 4 years. I've been on oral ABX the whole time. I had a complete resolution of symptoms after only 1 month. I thought I was done with this disease in 2014 and 2015. I then relapsed early 2016 and haven't been able to get right since. JSC has many issues, one of which is not listening well after you become "old news" as well as not thinking outside the box if their approach stops working. PM me if you want to discuss more. Thanks.

jonesy55 said...
I have been seeing Dr. J for nearly 4 years. I've been on oral ABX the whole time. I had a complete resolution of symptoms after only 1 month. I thought I was done with this disease in 2014 and 2015. I then relapsed early 2016 and haven't been able to get right since. JSC has many issues, one of which is not listening well after you become "old news" as well as not thinking outside the box if their approach stops working. PM me if you want to discuss more. Thanks.

Jones, can you either enable your email so I can email you or can you email me ? I would be interested in you elaborating. Thanks !

Yes I am looking into another llmd. Just not sure what is next.