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Push for treatment before WB results?

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Posted 4/4/2017 8:12 PM (GMT -5)
Hi forumers...
Probable Lyme mama here. My daughter (age 20, 3rd year at college) has been sick for exactly a year. Last March she was a healthy, active (dancing several times/week), full-time student with a paid job and a volunteer job. We went on a trip to Portland, OR; at that time she was able to do a 5 mile hike up to waterfalls without any difficulty. Symptoms started a short time after our trip. A year later we've seen hematology, rheumatology (daignosed fibro, prescribed Cymbalta & Flexeril), opthalmology, neurology. As a 20 year old female, everyone wanted to blame it on stress/anxiety/depression, etc. Soooooooo aggravating! I highly doubt that they would have said this to a 20 year old male. I have no issues with a mental health diagnosis when it's appropriate (I'm a mental health professional), but I know my kid, and she has something organically wrong. She was tested twice for Lyme (I think Elisa), and the HMO docs concluded negative and downright refused to do Western Blot testing.

So, I purchased a PPO insurance plan, and we saw Dr. A.S., in SD, CA. He ran initial tests (not sure what labs exactly, but they were with Labcorp) - and she came back positive for IgM 41; IgG 23, 41, 66. Yesterday she had blood sent to Igenex to test for Lyme and for co-infections, and also to Galaxy (he suspects Cat Scratch Disease). I see from other posts that IgG 23-25 is specific to BB. Dr. A.S. is waiting to start any treatment until after WB test results are back. Our appointment with him is May 2nd. Is this wise? Wouldn't it be advisable for him to start her on doxy immediately? I'm trying to trust his guidance, but we have a TWO friends who went untreated for so long that they became chronic, and I'm nervous that any further delay will negatively impact her.

I tell ya, dealing with a sick kid, even though she's a young adult, has been so, so challenging. She has coped amazingly well over the past year, but she has lost so much (had to go part-time at college, was not rehired for a job, can no longer walk for more than 30 minutes, let alone dance) and it has been heartbreaking.

Thanks in advance for support/suggestions. It is a big relief to possibly have an explanation (the one I guessed from the start). I never thought I'd be hopeful for a diagnosis of Lyme!

UCSDMom
Posted 4/4/2017 8:18 PM (GMT -5)
Welcome to our community, UCSDMom!

I'm sorry your daughter has lyme disease...but glad you found us here!

Waiting until May 2nd won't really make that much difference...since it's been a year already anyway.

But, she does have lyme based on the Labcorp test. Not sure why the Dr. wants another WB done.
If the Galaxy test for Bartonella comes back negative...don't be surprised. Testing for the co-infections is even more unreliable/inaccurate than lyme testing. Many false negatives.

We encourage all our new members to take a look through the thread at the top of the page title: "New to Lyme?..Start Here!" It's packed full of useful information.

Please feel free to ask any questions you have...keep reading posts...lyme is a steep learning curve.
Posted 4/4/2017 8:35 PM (GMT -5)
Hello UCSDmom,

We're glad you found your way here.

We are a group of supportive people who understand and relate to your situation.

Hoping you get all the answers you need to get your daughter well again!

Hugs!
Posted 4/4/2017 8:39 PM (GMT -5)
Thanks, Girlie. I've been spending the last few (work - don't tell my boss!) hours reading, reading, reading. And I had already read tons when I first suspected LD about 9 months ago. I am not clear on whether Labcorp did a Western Blot... but I'm not sure what else it could be, if it shows the positive bands? I want to ask Dr. S, but he doesn't avail himself of many questions; I learned that in our first appointment with him. We're sticking with him because he appears to know what he's talking about, and my daughter immediately felt comfortable/confident with him, unlike any other MD she'd seen in the last year. It does seem strange that he wanted the WB done with Igenex, unless it is to confirm dx, and check for the co-infections. At the low, low cost of $1500. Sigh. This only bothers me if we basically already have the result.

You're probably right that a few more weeks won't make much difference in the end. I'm just so anxious to have the answer and to get her started on treatment. She's just headed into her final quarter of classes, and if she's going to feel ill with treatment, then I'd rather it happen earlier in the quarter, than in mid to late quarter.

Anyway, thank you for the response, and I'm sure you'll be seeing me around quite a bit in the next few months!
Posted 4/4/2017 8:49 PM (GMT -5)
Yes the Labcorp test was a Western Blot.

If she is negative for the co-infections...it doesn't mean she doesn't have them....but they can be diagnosed clinically - or as some LLMD"s do - they treat the 3 B's (Borrelia, Bartonella, Babesia)

Since there is some time before she starts treatment...it would be wise for your daughter to start detoxing.
She should develop a daily regimen...this will help flush out the toxins created from the bacteria die-off.

- drinking minimum 8 glasses of water daily is really important.
- taking probiotics for her gut health
- a liver support supplement

Take a look at this website for detoxing ideas:

www.tiredoflyme.com/detox-methods.html

A few suggestions - some detoxes that I do:

- warm epsom salt baths
- dry brushing before my baths
- Take Nutramedix Pinella nerve/brain cleanse and Burbur Detox
- Take a binder (the one I take is Activated charcoal)
- exercise (this can be a short walk or stretching exercises...if she's able)
Posted 4/4/2017 9:26 PM (GMT -5)
Mom-The doctor may be trying to get a CDC positive test from Igenex. That would make getting some of the more expensive-need prior authorization drugs covered by your insurance.

From one mom to another sending you and your daughter healing thoughts.

Janet
Posted 4/4/2017 9:36 PM (GMT -5)

jrpsf said...
Mom-The doctor may be trying to get a CDC positive test from Igenex. That would make getting some of the more expensive-need prior authorization drugs covered by your insurance.

From one mom to another sending you and your daughter healing thoughts.

Janet

Thanks, Janet. I never thought about that.
Posted 4/5/2017 1:21 AM (GMT -5)
Thank you! A CDC diagnosis is a very interesting idea, and I'm all for having some of the meds covered by insurance, iF possible.

Great suggestions about detox as well. I'm actually homozygous for MTHFR 1298C myself, (this means daughter is at least heterozygous for the mutation, and will have additional challenges), & so I've done some research on detox. I started her on probiotics already. Liver support is a great suggestion - one I hadn't considered. Her blood test also showed elevated ALT = liver damage? She doesn't drink at all, so it seems like the infection may be taxing her liver.

I think I'll rest a little easier tonight knowing there are so many wise folks on this forum to guide us!
'Night,
Mom
Posted 4/5/2017 1:44 AM (GMT -5)
RE: elevated ALT.

Several months after starting antibiotics, a few of my liver enzymes were raised. I don't think ALT was one that I had been testing monthly.
But AST, bilirubin AP

Took 2 1/2 months off abx. Then started up again as they were now in range (top of range) - started treating bartonella...and they kept dropping and haven't gone up since. It's been over a year now and they're still good.

I think the infection(s) did have an effect on my liver.
Posted 4/5/2017 2:11 AM (GMT -5)
Your daughter needs to push fluids. I get that when you feel awful one of the last things you want to do is drink endless fluids but it makes a huge difference. The liver is our bodies filter. It has a tremendous job in the world we live on even if we are perfectly healthy. For those of us who are not we are pushing our liver to it's limits.

I hate having to stop a treatment that's working because it's too taxing for my liver.

Try getting your daughter used to drinking water with fresh lemon. That's the best for her and the more toxins she flushes through her system the better she'll feel.
Posted 4/5/2017 2:32 AM (GMT -5)
Jrpsf - When she said her daughter didn't drink...I took that to mean alcohol (re:her liver enzymes)....not water.
Posted 4/5/2017 10:33 AM (GMT -5)
Good morning - yes, correct, I meant she doesn't drink alcohol (should have been more specific), and, I keep encouraging fluids. One of her symptoms is frequent urination, so that's no fun.
If I could, I would take on all of her symptoms for her, if that meant she would feel better...
Mom
Posted 4/5/2017 10:47 AM (GMT -5)
Hi UCSDMom!
Welcome to our community! I'm so glad you found us.

Frequent urination could be a sign of Bartonella, just so you know to really look at that infection as well.

I do agree that the elevated liver enzymes are likely due to the infections. Many here use Milk thistle to help detox and protect their liver - I can't, as I'm allergic to rag weed and must cleanse and detox my liver in other ways. I would encourage you to get your daughter to look into these as well.

One thought I had, after all the issues and doctors that your daughter has been through so far, could it be that she's comfortable with this doctor specifically because he actually LISTENED to your daughter? I know that most of us feel that way when the first doctor actually listens and agrees that we have medical issues that need to be addressed. If that happens to be the case, then you might feel a bit easier seeking a second opinion for treatment approaches. And, this is just a thought.

I think all mothers feel that way about their kids - I know I did, and I was the one that had Lyme and company! My kids had some health struggles, but not these infections, and I still want to take it all from them! And my oldest is now 33!!!

Keep asking questions!! !We will do our best to be of help to you!
Posted 4/5/2017 6:57 PM (GMT -5)
Hi Traveler - I'm glad I found you too!!! Thanks for info on Bartonella; I didn't know that frequent urination is a symptom. I know the blood is on its way to Galaxy Lab.

I was surprised at how instantaneous my daughter "PJ's" positive response was to Dr. S. Yes, I believe a big part of that is that he listened and immediately had theories which were aligned with our gut feelings about her illness. PJ is also a very intuitive person, and there was something about this doctor which made her feel safe. So I'm trying not to be a helicopter mom, and to withhold judgement until we see where this goes. For sure I will keep the second opinion option in my back pocket smile

I am certain I'm not alone with the pain of watching my child suffer. I try to find gratitude that she doesn't have a more serious or life-threatening illness, and that treatment could be POTENTIALLY be curative or at least relieve some of her symptoms. I'm so scared that her LD could become chronic, mostly because we have a family friend in his 50s with chronic LD, and we've seen what he's gone through. I'm crossing my fingers and toes that if she's "only" had it for one year, that the potential for cure is better.

Now I have to start working with PJ on doing detox... she got turned off to any kind of pill pretty quickly (she's never been great at them) after taking iron for 6 months, so I'll be particularly interested in other forms (teas, tinctures, epsom salts etc.) It's very helpful to see what the rest of you have already discovered!

Thanks again for all the suggestions and support!
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