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Update on DD - Galaxy results etc

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Posted 5/26/2017 11:23 PM (GMT -5)
Hi all -
Thank you to the 2 members who emailed me offline smile It is much appreciated! Galaxy lab results came back.DD was tested for D.quintana and D.henselae. Both came back as IgG 1:32. Not CDC+, which is 1:128, but Dr. AS said that he still considers it a positive result because she is reactive as well as symptomatic. Interestingly, before we went to the appointment this morning, she was complaining of shin pain specifically. I just googled the different bacteria strains, and turns out one is "Trench Fever" which causes shin pain! Dr. S is starting her on bicillin shots every 2 weeks ... anticipated to last a year! Yikes. Fortunately we're close to Mexico, so my sister who is Spanish speaking can help us get the Rx from a Mexico pharmacy at 1/10th the cost. Dr. S was the one who suggested it, stating that he has a patient who is a chemist who compared the compounds in Mexico to the ones in U.S. and found them to be exactly the same. I'm going to ask a nurse friend to teach me how to do the shots. (I've been giving my cat subq fluids every few days, so hopefully that has been good practice!)

We also went to the Office of Student Disabilities today - DD wants to try to finish out her term (3rd year college) at home. There are only a few weeks of the term left, so she's contacting her professors to hopefully get their agreement for her to submit everything electronically, and miss the last few classes OR have someone in the class take notes for her. I hope that this is approved by her professors. She's been fighting hard to stay enrolled.

All for now!
Posted 5/26/2017 11:42 PM (GMT -5)
Thank you for updating us here!


...and good that your daughter has a diagnosis and treatment will be starting soon.

Did the Dr. discuss anything else regarding the bartonella treatment besides the bicillin shots?

I hope your DD will be able to finish her term at home...that would be great if she could.
Posted 5/26/2017 11:52 PM (GMT -5)
Hi Girlie - thanks for the support! I totally forgot to mention that DD's liver enzymes and ferritin were back to normal, and doc started her on zithro, nystatin, and plaquenil last week. Yay! He is planning to add rifampin for the bartonella, but says it will depend on how she is responding to the zithro and bicillin. He suggested she keep an Excel spreadsheet tracking severity of common symptoms: fatigue, pain, etc. so that they can visually monitor how she is responding.

Post Edited (UCSDMom) : 5/26/2017 10:55:21 PM (GMT-6)

Posted 5/27/2017 1:06 AM (GMT -5)
Sounds like a good plan.

Is she able to work in good detoxing regimen? Im sure once she is home that will be easier to schedule ... and of course with you there to help her.
Posted 5/27/2017 11:03 AM (GMT -5)
UCSDMom, this is awesome news! I love the idea of the spreadsheet. That is what I used to track my symptoms, meds, the moon, blood pressure/pulse, barometric pressure and overall general feeling. It was so much easier than trying to remember all of those. I am so glad I did that.

I have a few friends that get meds from Mexico and procedures done. Many good doctors have relocated there and pharmacists too.
Posted 5/27/2017 11:24 AM (GMT -5)
Congratulations on the progress! I do hope that your daughter can finish her school at home!

Do you happen to know what was done to lower her ferritin levels? I know that we have a few on here that deal with high ferritin levels, and it may be helpful to them.
Posted 5/27/2017 12:11 PM (GMT -5)
Good morning - packing up DDs dorm room to move her home, in the hopes that we'll get professors agreements after the fact!

To answer Girlie's question about detox - yes, I have her doing dry brushing, Epsom salt baths, probiotics, bentonite clay masks, milk thistle tea, arrowroot tincture. Any other suggestions (esp non-pill forms) are most welcome! I am homozygous for MTHFR, so can't detox well; chances are DD also has trouble detoxing. One big goal of bringing her home is to have her eat as cleanly as possible (we both have a terrible sweet tooth (eyes)

In terms of lowering her ferritin: she had two phlebotomies (removal of blood) done a few weeks apart. That seems to have done the trick. It was rather ironic (and frustrating) because this time last year she had very low ferritin, and was given 3 plasma infusions!
Posted 5/27/2017 12:35 PM (GMT -5)
Thank you for the information on how her ferritin was likely lowered! It's an option.

I would encourage you to increase her detoxing - but to also get the genetic tests done on her to see if she is like you or not. You can use activated charcoal, even if you buy the capsules, they can be opened up and emptied into a glass of water.

If she is having issues with swollen/sore lymph nodes, red root helps with that, as to lymph massages. If you are unsure how to do the lymph massages, I can post a video that will help.

Alpha lipoic acid is a precursor to glutathione in the liver - but those are pills, although you could plop them into the blender when doing a green smoothie (great for a sweet tooth for me! I add lots of berries).

Yogi detox tea is one I like to help with liver and kidney detox.

Dandelion tincture helps tremendously with liver detox as well. But since she is doing milk thistle, I would be cautious with adding this unless she needs the extra help.

Hmm, that's all I can come up with that doesn't include using pills right now - but as I said, you can always add some of the pills to a green smoothie to help her get them down.
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