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Really bad week, year....thought feeling this ill was behind me

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Posted 8/4/2018 12:15 AM (GMT -5)
Even after 16 months treatment i still have certain symps that persist but I feel there were days last year where i had 50%-60% function......i was so happy, felt i was on path back to normal or at least my new normal.

In January i feel I caught a bug and it took weeks to kinda recover. But I have been unwell since then with some 30%-40% function. More symps. I have been slowly declining. Had a few weeks in may where I thought I was finally getting better but since serious decline. Saw llmd a week ago. The week since I have crashed. At times thinking I need to goto er but reminding myself that would be a waste of time, money, and `energy` I don't have. This almost feels like her. Mind you I was one that did not have many herxes, it depended in the abx (if memory serves minocycline was the worst).

The only things we added were licorice root and cortisol manager to try and get sleep under control again(back to night instead of day). I find it ridiculous that I'm asking but anyone feel I'll, like her symps when taking these? I also added d3k2 a couple days ago but I was declining before that.

This is scary how I'll I feel, once again like someone beating me with baseball bat. I hurt every where. Increased level of hurt, mostly bedridden, really off balanced when walk, nausea, pain in joints, severe fatigue...yada yadavyou know the drill

After all these years I did not expect this kind, level of failure again. I am confused
Posted 8/4/2018 4:32 AM (GMT -5)
I am sorry Roxie60 that you are going through this. I understand the feeling of oh my gosh I feel better and I must be getting better than wham....the symptoms come back and hard.

All I can figure is we have biofilms, persisters and for me also detoxification and inflammation issues that need to keep being addressed.

Other possible factors : Sometimes we need to change our treatment because the bugs have gotten resistant to it.

Have you checked for mold, candida other possible infections.

I know it is difficult but keep getting plenty of rest, keep building your immune system.

Take care and I hope you get some relief soon from these symptoms.
Posted 8/4/2018 7:45 AM (GMT -5)
I would recommend getting fresh labs done at this point - all the regular stuff plus full thyroid, hormones, total IGE, IGG, IGM, IGA, and test for bacteria and viruses - herpes viruses, EBV, CMV, mycoplasma and chlamydia pneumonias, influenza, etc.

This relapse happened after a "bug." The labs can help identify what's hurting you. Buhner has herbal treatments for most of this stuff.
Posted 8/4/2018 9:08 AM (GMT -5)
The setbacks are the worst, so disheartening and mentally difficult. I hope you can find relief soon, there are many ways to get better from this stuff but it can take a lot of trial and error, lots of ups and downs. Did your treatments mostly revolve around antibiotics? could look into Buhner/Rawls protocols if you haven't already tried those, like goshawk says sometimes it's good to mix things up, these bugs are cagey and need to get hit from new angles sometimes...

Getting new labs isn't a bad idea. Might help get a better picture of where you could focus your efforts in treatment.

I've found LDN to be helpful for pain and things of that nature. I never tried cbd oil but that might be another one to look into.

Have you treated for all 3 infections? it could be that one infection is dominant and causing more problems but hasn't been fully addressed. For instance, I think it's Dr Jemsek who says babesia/babs like organism needs to be tackled before the other infections can be treated successfully... it's an interesting hypothesis.
Posted 8/5/2018 4:54 AM (GMT -5)
Thanks for your replies. Actually did have new labs last week. Results last Thursday when I was starting to get even worse. As usual some 5edults out of range. I think As of now (sun am) I may be recovering back to just dysfunctional from `am I going to survive these symps`. Yesterday evening temp got to 100.3 at one point. Mind you since I got sick with all this stuff my new normal temp has averaged 97, so can be 96.5 to 97.5. Soon 100.3 is highest I've seen in over 14 years. Actually seeing anything above 98 surprising. Now just need to recover from 4-5 very I'll days(multiple symps).
Posted 8/5/2018 5:32 PM (GMT -5)
Going through similar and looking for answers. It's hard to understand all that is involved with Lyme and co-infections.

I backed off treatment when things started getting worse to keep job, then went stronger today and paying for it. Will be interesting to see what people also tell you and what your scores are. Mine have come back higher than ever.
Posted 8/5/2018 9:46 PM (GMT -5)
Stop the licorice root and the cortisol stuff that is the problem the temp rising says it all to me I am no dr but you got to be careful with hormones. Wean them down and you will start to feel better my guess. Hope you start to get better and find out what is wrong. Let us know please what worked
Posted 8/5/2018 11:12 PM (GMT -5)
I did stop the Licorice root and Cortiso Manager supplements(I think 2-3 days ago but not sure). Even with my genetic sensitivities to pharma and supplements I find it hard I would have so many symps similar to pre treatment. So really baffled was the past week or so due to a flare(if so probably worst I recall in a couple years), the new supplements or combination of the two. I did find one link that listed side effects which seemed opposite of norm. But I side experience most of the side effects listed. I just had so many other lyme/coinfection type symps also. Anyway, can report as of this evening I seem to be getting back to my `normal`.. just took temp 97.2
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