In need of encouragement regarding daughter's Lyme dx

Hello, wonderful group of people -
I first posted a few weeks ago. Quick recap: DD (age 20) symptoms first started 3/2016 following a trip to Portland where we did a lot of hiking in wet, national parks. We live in SoCal, but have traveled all over the U.S. and other parts of the world, including Malaysia, South Africa, Fiji, Malta...so I guess it's possible she could have picked it up anywhere, and that it was dormant for some time...? She did not have rash or fever, or recall any tick bite, though she gets bitten all over wherever we go. Symptoms were initially joint pain, muscle weakness, fatigue, brain fog, then moved on to tachycardia (likely POTS), tremor, visual disturbance, lightheadedness, and severe fatigue. She was seen through our HMO - PCP, heme - who discovered very low ferritin (15), so gave her (partly on my insistence) 3 blood transfusions over about 6 months. When that didn't help symptoms, we saw rheum, who diagnosed fibro and put her on Cymbalta and Flexeril. From the very beginning, I suspected LD, because we know of 2 dx family friends (with neurolyme). I asked HMO to run tests - she was negative on Elisa, and they refused to run Western Blot.

I considered ordering our own WB kit, and wish I had done. I did get her on a PPO January, 2017, and we initially went to a neurologist, who said "anxiety and depression." At least we were able to r/o M.S. with that doc (who ordered an MRI on my insistence). Finally, I was able to get her in to see A.S. in Sorrento Valley, CA - not a LLMD, but apparently an expert at lots of chronic diseases, especially rheum.

Dr. S. said "bartonella" immediately, before any exam, blood test, etc. He did an ultrasound many joints of her joints (charged over $100 for each joint), and said "I'm seeing classic LD," though would not really explain what he was seeing that led him to this conclusion. He ran Labcorp WB, which came back positive for IgG bands 18, 23 & 41 and IgM band 41. Positive IgG of chlamydia. Very high ferritin levels and very elevated liver enzymes (ALT). For *SOME* reason, he decided to have WB run through Igenex, along with tests for co-infections (at almost $1,200). I understood about the co-infections, but why re-run the WB, if it was clear that she had a LD? I asked him if this was perhaps for CDC diagnostic purposes/insurance coverage of treatment, and he said basically "phlbbbbth to the CDC, I need a road map of where she is starting, so that I know where we are going." Ok, I understand and agree with the bit about the CDC, but I still don't understand why did he need further confirmation ...? Anyone have any theories?? The specimen sent to Galaxy for the Bartonella testing was "mislabeled," so that was re-done last Friday.

His treatment plan: phlebotomy 2-3x to lower ferritin, hopefully bring liver enzymes back to normal (he said Bartonella could be contributing, not just her infusions last year). Prescribed Trental for vascular support, Vit E, and Bromelein (pineapple enzyme) for anti-inflammatory, anti-oxidant purposes. When her liver is OK, he plans to treat her with plaquinil, zithro, and rifampin. What are the wise folks's thoughts about this treatment protocol?

I already had DD on probiotics & recently started milk thistle, dry brushing, epsom salt baths. She started Trental on Friday, and is already having bad side effects - tachy, flushing, worsening malaise, disrupted sleep. I am not an MD, but work in healthcare, and decided she should titrate up on meds slowly. Probably her liver is working too hard to handle the new med.

DD in her 3rd year of college, and fortunately was able to go part-time for this quarter. She plans to be home all summer to get started on getting well. I am very worried about not starting antibiotics for another 4-6 weeks, but, I understand her liver needs to be in better shape first.

Omg, my anxiety levels are so, so high right now. I feel as if we're on the right track, but I have issues with the MD not giving clear explanations for things. Does anyone wonder if these docs get kickbacks from the labs? I hate to be such a cynic, but again, I work in healthcare, and I see shady things all of the time. I know I need to take care of myself during all of this too, and I'm trying. DD doesn't live at home right now (she lives on campus), but I worry about her ALL of the time. I worry about whether she'll get well, whether she'll have a "normal" future, whether I did as much as I could have to advocate for her, whether she's already sustained liver damage.... the worries are seemingly endless.

Thank you for taking the time to read the long post. DD left to go back to campus today, and I'd rather she were home with me, so that I could feed her, make sure that she's taking her supps, encourage her to take short walks and long baths, etc. etc. Ok - now I'm off to my yoga class to hopefully chill out!


ETA: I said "quick recap" in the beginning. LOL

Post Edited (UCSDMom) : 4/24/2017 6:23:11 PM (GMT-6)

Thanks for coming back to post this recap.

Wow - first she needed iron..and then she had too much!!!

When you get the results from Galaxy - will you post an update?

Rifampin and Zithro are a good combo for bartonella.
I'm not familiar with the Plaquenil...but have seen it on others' protocols. (i can't comment on whether it goes well with zithro and rifampin)

Hang in there mama - keep going to yoga!!!

To me, it sounds refreshingly like he knows what he's doing. You're fortunate to live in California where the law is somewhat more lenient for knowledgeable Drs. to treat properly.

It's impossible for anyone to know exactly the best and fastest way to treat these infections, but I'd feel blessed to have found this Doc. and could afford him.

I hope that your daughter is feeling up to having and feeling like she has a part in her healing protocol, feeling empowered in someway when she feel like her world is turning upside down will help her in huge ways, get through the road ahead, and it's awesome you're right behind her!

This is kept a family friendly board so you could encourage her to join as well, for a place to not feel so alone in her symptoms, or some here can point her in the direction of on line youth support groups.

This is one heck of a lonely disease.

From a google search this is why the dr did the Igenex test.

"I was also curious about why Igenex was supposed to be the lab to get tested at so I looked into why their tests are more specific.

There are 3 reasons...

1. Quest/Labcorp make their Lyme WB probes from Rabbit antigens. Igenex used human samples.

2. Igenex uses samples from patients across the U.S and Europe, as well as patients with both early and long term Lyme infections.

3. Lastly, Igenex uses a 12.5% acid gel to separate out the bands. Quest and Labcorp use only a 10% solution."

That's from a 2007 post but I believe it's still accurate.

Regarding Plaquenil-I recently read this-Plaquenil. "This drug is classically known as an anti-malarial and might busts cysts so it definitely has good actions, however, I’m not in love with any drug that has the ability to suppress your immune system. Plaquenil will do that. It’s a strong immunosuppressant which just says to the pathogens, “Hey guys, party on!” As in, this person’s immune system is asleep, let’s proliferate. 

Plaquenil can affect your mood and cause anxiety and deep depression, as well as irritability and even feelings of psychosis, like you’re losing your mind or you’re not part of current reality or you feel depersonalization or derealization"

I read that here-
suzycohen.flywheelsites.com/articles/babesia-testing-and-treatment/ Suzy Cohen is very well thought of in the Lyme community. She's a pharmacist. You can read her other articles here. I found them really informative. suzycohen.flywheelsites.com/articles/

You have NOTHING to feel guilty about. You've done an amazing job, truly. It's awful to see your kids suffer. Worse when you can't take away the pain. There's no cute band aid or roll of stickers that's going to make this all better.

You've started her on the road to healing and to being healthy again. It's not a quick fix but yes she will have a "normal" future. I put that in quotes only because is anyone really normal? If so, were is the fun of that.

Avoiding stress with these diseases is paramount. If you are really struggling with her illness (I would be if it were one of my kids) then you might opt to seek out a therapist who specializes in chronic illness.

Keep coming on here for support-Nor Cal Mom
Janet

I sure feel your concern over your baby girl. She will always be your baby girl. I still am my Mom's and Mom is 85.

By searching out the internet, it is obvious that you are smart and looking for good answers.

Finding an LLMD is the best way to start and you have already started her in a detoxing mode. Good for you.

Jrpsf mentioned stress and I will reiterate that caution. Stress does nasty things to us when we have lyme or when we are healed.

For me personally it was my worst enemy. So stress free is super important. Also, time for her to give up fast food and packaged foods. Everything she does needs to be for health.

You are doing great and she will get back to her good health. It will take some time, I won't lie to you. But, slow and steady is the way to get there.

Gosh, sorry to hear of your daughter's challenges but it sounds like you are on the right path for her. DS took CoQ10 for vascular support and used Malarone instead of Plaquenil. I would be careful of anything that's immunosuppressive. As I'm sure you're aware from reading here, she will need to be detoxing a lot when she starts to antimicrobial treatments. It was a very rough 6 months for our DS when he started antimicrobials despite doing lots of detoxing, which meant school was a challenge. I don't know if you mentioned it, but if she could take the summer off from classes as she starts treatment, that would probably be a good idea. We've found the more rest/lying around, the less the extreme fatigue after those first treatment months.

Also, our DS pulses his meds which seems gentler on the system. I'm not sure if you mentioned she would be doing that or taking them daily.

There are no quick remissions from what I can tell, but over time she should see improvements to disappearance of various symptoms. Best wishes! You'll find great support and knowledge here.

Shout out to all of you for the wonderful responses! I felt better after yoga last night, and even better after the reassurance on here. @Girlie and others - I will most definitely share the Galaxy Lab results when we get them. For whatever reason Doc strongly feels that we're primarily dealing with Bart. I agree that the plaquenil is probably for cell receptivity, but we will keep an eye out (when she starts protocol) for depression/anxiety. DD had pre-existing mild anxiety/OCD (thankfully no depression), which didn't help her cause when it came to getting diagnosed! Doc offered "ultra low dose" Naltrexone, but DD declined because of potential side effects.

Herxing scares the bejeebers out of me because I think DD is very sensitive and probably has problems detoxing (I have MTHFR, so she has at least 1 mutation). But I do know about pulsing, and we will mostly likely fiddle with going slowly. Yes, she is taking the entire summer off to heal. I'm so glad that she will be home so that I can help her with her diet (she is eating dorm food now - and is also vegetarian).

@Julymorning - I told DD about the forum: she may join. She previously found online support for CFS, because that's what she thought she had for some time. Issues are similar of course. It's tricky because she is no longer a child (even if she is MY baby!) and does need to make some of her own decisions. She's so darned fatigued that making decisions/taking action is super challenging. I'm OK with babying her/guiding her for now, because I have the energy & knowledge to do it. What a time suck, though!!

I plan to watch Under Our Skin. Thanks @Bluelyme and @jrpsf for suggestions about why Doc wants confirmation from Igenex. @Sebreg - SPOT ON about communication with Doc!! I feel SO fortunate that he took her seriously, and has a reasonable treatment plan, but I am probably more well-read (and work in healthcare) and know about self-advocacy than his average patient, which clearly makes him uncomfortable. The most recent appointment, he tried a new strategy with me "That's a very good question..." which he proceeded to only half answer. I know when I'm being told "Doctor knows best." LOL. He's definitely old school, and from Eastern Europe, so it must be hard for the guy to have me second-guessing him (as he most likely perceives my questions). We shall stick with him for now, since he does seem to know what he's doing, and he certainly hasn't made any crazy promises or tried to sell us bundles of ultra expensive supps.

I am so proud of my daughter: she has amazing resilience and coping strategies, and has been incredible at practicing mindfulness, living in the moment, paying attention to her emotional and physical needs, and not wasting her time on relationships that drain, rather than replenish. She lost her RA job - which meant the world to her - because she was told (in a fairly brutal manner) that she needs to take care of her health. And still, she was able to find the silver linings. She has learned by age 20 what many of us take much longer to learn... so yes, despite the pain of seeing a year of her life essentially hijacked by this disease, and dealing with multiple doctors who weren't listening, she has come out with some great skills in her pocket.

Thanks again for the much needed encouragement. I'm sure I shall be back regularly over the coming year (staying hopeful)!

ETA: @Sebreg - bought one of Buhner's books already

Post Edited (UCSDMom) : 4/25/2017 7:56:55 PM (GMT-6)

@ Girlie thanks for that info on Plaquenil. I've not heard of it before and when I googled it it said is is a quinoline and can be used for maleria which meant "babesia" for me since malarone is an anti-malerial too. Wonder if it works on babs too?