How many have discovered more co-inflections when treating Lyme

[Guest pandas16]

Just wondering how many people found other co-infections when they went to treat Lyme aggressively? and if yes what were they and is your child better now that the infection is treated?

[sf_mom]

80% of individuals with Lyme will have a co-infection. Many will have more than one. Viruses/Molds/Fungus are also issues. Many of our co-infections have been diagnosed throughout the last year as we've broaden our testing and treatment and certain symptoms have taken predominance.

 

Me: Lyme, Ehrlichosis, Mycoplasma, 4 viruses inclusive of XMRV, treated for Babesia and seems to be mostly resolved (treated since Feb), KPU

 

DS1: Lyme, Babesia, Bartonella, Strep (resolved), XMRV, KPU

 

DS2: Lyme, Babesia, Bartonella, Coxsackies, most likely KPU

 

DD: Same as twin brother, Lyme, Babesia, Bartonella, Coxsackies, most likely KPU

 

All test results are via different methods and labs. All three of our children are doing well with treatment and trending towards recovery. I would say our older son maintains in 95% recovered or above 'day dependent'.... and still is positive for all of the above. He still has 'at least' a year of treatment as we begin to focus on babesia treatment that we just confirmed him positive for recently. I feel one of the key elements to our successful treatment of Lyme et al has been the heavy detox program we have been following for the last 18 months.

 

-Wendy

Edited June 20, 2011 by SF Mom

[MichaelTampa]

I was diagnosed initially with lyme with the bartonella coinfection. The diagnosis of bartonella was based on symptoms, as I was negative on the one test I took for that. There are many similar bugs and the better term some are using is BLO's ("bartonella like organisms").

 

About a year into treatment, with things a little stagnated, no more progress, doc said we should treat as if I have babesia too as that is sometimes the reason people stagnate. He explained that I did have some babesia symptoms, even though they were not dominant. This worked out very well, restarted progress, so I assumed he is correct that babesia was discovered later as you asked.

 

Of course, later at a conference I hear Fry Labs has discovered a protozoa that is another coinfection some have, and Dr. F. (of Fry Labs) is treating it with antibiotic protocol that is very similar (essentially the same) as that used for babesia. This new protozoa was initially called FL1953 and now has a 2-word difficult to spell and pronounce name. In retrospect, maybe it was this protozoa that I had, as treatment went very fast and well with this, whereas so many struggle with babesia treatment being so difficult. Well who knows. Perhaps we really need a "babesia like organism" term as well.

 

Treating this babesia or whatever helped a lot, I am much closer to being all fixed up having done that, but would say I am still not there yet.

[sf_mom]

Michael, very interesting. I too think I had 'babesia' like organism. Negative on all tests. Very symptomatic but having great success with treatment. I think we are on similar protocol as well. Doxy/Clindo alternating Alinia and Tindamax every three weeks.

 

-Wendy

[NancyD]

Dd15 started with strep at age 2 -- severe PANDAS now in remission for 1 year. Been treating her Lyme for 9 months --many of her symptoms have disappeared. Rotated to Bartonella abx since no progress made with her anxiety and OCD and within 2 weeks she broke out in Bartonella rashes. LOTS of herxing now -- mostly anxiety.

 

Have been treating my Lyme for 8 months. Doing much better. Some herxing lately with rashes that look like Bartonella. Also came out borderline for Babesia on testing.

[JuliaFaith]

Ds13 has been diagnosed with the following:

 

-PANDAS (son did not respond much to any of the treatment for this)

-Lyme - treatment is ongoing but not aggressive right now, same for Bartonella/Babesia (Did have some flare-ups/rashes when treatment was more aggressive)

-Bartonella

-Babesia

-Mico and another one I cannot remember (with Iodine nebulizer daily Dr. said it would take a year to get rid of - after 8 months is showing signs of improvement in the lungs thru ART testing)

-MaRCONS (Dr. said 3 months treatment - we are on 2nd month-fatigue seems pretty much gone)

-Thyroid condition (gained quite a bit of weight but hoping this will also, with treatment, go away)

-Mold illness (just found this one - it could be preventing rapid improvement on lyme and other treatment) Currently on 3 months nasal spray treatment and trying to make sure there is no mold in the home which is taking many months and lots of $$$!)

 

Dr. said it is like an onion where the layers are revealed as treatment progresses. I just hope we are on the last layer!!!!

 

Best wishes for you and your family.

Edited June 20, 2011 by JuliaFaith