Be warned, it's really long, as I'd never shared most of that, so I wanted to just ask a few direct questions-
If I want to get a second round of testing done, for possible Lyme and Babesia, how or where would you recommend doing it?
I've so far been treated with Azithromax, Mepron, and Coartem- I've had doxicyclene recommended. Does anyone have any advice on what the best treatment is for that assumed diagnosis? (Main symptom is extreme exhaustion)
I was bitten ten years ago, worsened after mono, and just diagnosed this year with chronic Lyme- How long should treatment take?
I would LOVE to hear experience on this subject, as the wide range of uncertainty in what I've heard has made me apprehensive about how to move forward.
Does anyone who had really long term chronic Lyme, with lots of exhaustion, have a story to share about how they were treated if it got better?
I had felt improvement at one point, but am back at a somewhat normal state- the idea of future relapses is really scary to me.
One last question- Is there any validity to the idea that if my symptoms come and go I should wait and treat it hard when they come back bad or is that folk science?
Thank you SO much for all your help and support.
Posted by Lymetoo (Member # 743) on :
If you've had it for at least 10 yrs, this could take awhile.. like 2 yrs at least.
Babesia and Lyme are not that easy to clear. The extreme exhaustion would point to babesia, in my opinion.
I took a lot of clindamycin and quinine for babesia, then finished it off with artemisinin and zithromax. I never even took mepron though I did take malarone.
It's hard to say about waiting to treat.. I sure wouldn't do it NOW. Now you need to hit this hard and try to get rid of it.
Later you could see how you do when your symptoms are GONE.
hope this helps! Posted by kimmie (Member # 25547) on :
My daughters LLMD says 1-3 years is a good average for treatment time, although he has gone longer in some.
Funny you asked about the lab testing as I have just researched all that for a local PCP. Here is what I have...
Lyme...Igenex 1st choice for western blot: CPT#86617
Labcorp before quest
Babesia...Igenex Babesia Fish (RNA) #88365 Babesia Duncani IGG/IGM AB #86317
Bartonella... Specialty labs Bart H IGM/IGG AB #8851 (takes insurance) Galaxy diagnostics for bart too.
Ehrlicha/anaplasma: specialty labs #7848 HME,HGE, IGG AB panel
Mycoplasma: Quest or labcorp
Those are my recommendations for testing at this time. Your LLMD or PCP can send the blood to these labs, although your LLMD may have their own preference.
As far as success...my daughter and I started treatment this year and we are both improving. I can tell you that treatment is "a marathon not a sprint".
Best wishes
Posted by t9im (Member # 25489) on :
My daughters Lyme MD indicated for a child Babesia treatment is 8 months and he treats based upon symptoms.
He never said this but we were just there and he left to converse with a MD from Maryland and when he came back while my daughter was having blood drawn he indicate this is what he told the Maryland MD (who normally only treats adults).
Once he and patient confirm symptoms are gone he continues to treat with drugs for 2 months.
During the 8 month time frame (I assume after 4 months) he adds a drug to more specifically target Lyme.
This MD's average treatment period is 3 years. Note I indicated average, it depends on the patient and how long they had Lyme & or co infections.
His average patient has had lyme for well over a year b/4 they find him.
Now I'll try to read your story this weekend but as I can see with my daughter this is no easy process nor is the recovery time span short.
The co infections complicate an already complicated bacteria.
Posted by t9im (Member # 25489) on :
Haustinc:
I read your story. I hope you become well again and think you were on the right path.
First I suggest you read Dr. B's Advanced Topics in Lyme Disease. It helps in understanding the drugs and treatments. I plan on re reading it this weekend.
It sounded like you were on the right BABS treatment (mepron and zithromax), just not long enough. If I understand this mepron breaks the coating the parasite uses to protect itself and the zith kills it. The mepron is also effective against the cyst form of LB.
I've read too many stories of people treating Lyme who also have BABS and if you don't do the BABS 1st they don't succeed against the LB.
The mepron & zithromax is the preferred choice for BABS due to its success rate and less side effects (means the other combo must be a real b****).
I can say after 4 months my daughters muscle pain, bone pain seem to be gone, sleep anxiety is way down, fevers decreased (they were gone but we think the cell deficient LB has started to assert itself) breathing is better, night sweats decreased so this is trending in the right direction.
Unfortunately without attacking the spirochetes we can also see the neuro issues (focus / concentration) and joint issues getting worse. We start tindamax this weekend to hopefully address this.
Good luck, this will take time, it will be difficult but you can be cured. I've read some nice success stories.
Also, you have to manage the side effects.
Posted by Haustinc (Member # 24532) on :
Thank you all so much for your help- Good to get some experiential advice to hold on to as I brace myself for the long haul...
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