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Review of our appt with a LLMD today

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Lyme Disease
How would you rate the advice of this doctor
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Posted 10/1/2013 6:22 AM (GMT 0)
We saw someone from Frontier Medical in Redwood city CA today for my 8 year old.

This is my last shot at posting to this group for help or advice. The response to my posts has been lacking and so this is my last attempt at asking for help/feedback from this group.

My daughter tested positive for lyme IGM and ind for Bartonella. She has been on Amoxacillin for almost two weeks. Ten days into her abx her symptoms flared and she got all the flu symptoms she had originally - fever, headaches, needle prick sensations, loss of appetite, insomnia, weakness, dizzy, weak legs that feel like lead and jello, pounding heart with fever and exertion.

Based on these symptoms the doc thought that she was more likely experiencing Bartonella symptoms and not lyme symptoms. She said amox is not the abx of choice and suggested adding zithromiacin. She extended her prescription of amoxacacillin from 3 weeks to 6 weeks and added 30 days of Zithromiacin. She also added a prescription probiotic VSL. And she has put her on Byron White A-Bart drops.

She said that she should not have a symptom flare up if she is on the 'correct' antibiotic. It seems like I've seen information here that contradicts that statement.

She said that band 41 is specific to viruses - not lyme. So, she wants to treat her with Byron White A-V for immune support to knock out any random virus'. Specifically, she mentioned being most worried about mono & CMV. I thought that someone here said that 41 is related to parasites not virus'.

I asked about testing for MThFr gene and she seemed to balk at the suggestion. Implying that it is getting a lot press lately and so that's why people are asking about it. She said that because my daughter didn't have allergies, or rashes, or other health issues that she probably didn't have it. I had been told to get this checked before starting treatment so wondering what the thoughts here are on this response.

I asked about homeopathy and she said not now. We are pulling out the big guns and homeopathy may come in handy down the road for maintenance but is not appropriate now.

She didn't mention anything about diet.

She thought that Nystatin might be needed if she develops thrush from all the abx.

How would the people of this community rate the advice of this doctor.
Posted 10/1/2013 8:31 AM (GMT 0)
Hi Katwoman,

 

I'm sorry you feel like this, but this forum has helped me tremendously... I've noticed that your previous posts were not unanswered.

 

What you describe as a flare seems a herx to me, especially because it happened after she started abx; And her symptoms say Bartonella, in my personal opinion.

It is very difficult to distinguish herxes from flares and symptoms - only after almost a year of treatment I suddenly saw the light - lol. Now I'm pretty confident about distinguishing flares from herxes.

 

I would advice you to go through the 'New to Lyme?.... Start here!' thread on top of the Lyme page, you can find lots of information about detoxing there. You can help your daughter with doing the dry skin brushing, and giving her epsom salt/peroxide baths, giving her plenty of water to drink (with lemon, if she isn't suffering from muscle twitching or muscle spasms).

 

My dr didn't say anything about diets either, but he had put me on a sugar free diet before, and other eliminating diets, maybe he considered that enough. But I would advice you to go off sugar, try to eat gluten free and if possible dairy free. Gluten and dairy increase inflammation, not a good thing while being treated for Lyme and co.

 

I received Azythromycin for Bart, combined with Plaquenil and Minocycline, then Rifampicin with Tetralysal, then Azythromycin with Tetralysal.

 

A good dr sould be able to diagnose based upon clinical manifestations of Lyme, cause the existing tests are highly inaccurate. I myself only tested positive on the 41 band, but then positive on an Elispot LTT test, and I have an almost complete Lyme and Bart symptom list.

 

I don't know about band 41 and virusses????

 

I think your dr knows what she's doing...

 

MarieLS

Posted 10/1/2013 11:29 AM (GMT 0)
Hi there,

I'm so sorry that we've been neglecting you,we are usually quicker to respond.

Maybe you posted during a "quiet phase" on the forum?

I can only say that joining this group saved my life,I have learned so much here and the members are wonderful caring people.

Marie has given you some great advice and I agree it sounds as if your daughter is herxing.

Is she detoxing? In my opinion nobody can get better without a strict detoxing regime.The toxins released from the die off can cause a massive flare up if they are not eliminated from the body.

A good probiotic is also vital,her tummy has to be protected if she's taking antibiotics.

Once more,sorry that you feel a little "let down" because of the lack of answers to your questions,I really hope that you decide to stay,believe me ,you are very welcome. :-)

Tickled
Posted 10/1/2013 12:07 PM (GMT 0)
Band 41 has *some cross reactivity but one can never definitively say that band 41 is the result of viruses. It is specific to the tail of spirochetael bacteria but can react with other things if that makes sense.

I think the plan for your daughter isn't a bad one and I'm glad to see he is using herbs as well. As far as diet and things like that unfortunately most drs do leave that up to the patients and we have to figure it out ourselves or learn online. (thats why so many of us our on here!)

As far as the MTHFR gene thing goes I believe you can pay $100 and get that checked out from 23andme.com. Its so hard to get drs to do anything these days! I also hope that the folks whose emails I gave you were able to help you out! Sorry I didn't have any other suggestions than that.

As far as yeast issues I eat yogurt or kefir most days, take probiotics AND azo yeast tabs 3 x /day (which is homeopathic)
Posted 10/1/2013 12:58 PM (GMT 0)
Hi kat,

I am on high doses of Amox and certainly do not feel great after taking it. Many days I need to lay down am dizzy and feel depressed. My Dr. added Omnicef which is a third generation cefalasporin. This has helped clear my head tremendously. I believe it also crosses the blood brain barrier. If you daughter is not allergic she may be able to get this medication. I have also started changing the times of the doses and am taking some of the amox right before I go to bed and this has helped. Hope she is feeling better soon. I think the dr advice was not bad. It is definitely a long term battle and the first few months have been a rollercoaster. Hope she is feeling better soon.

Post Edited (BarnGurl) : 10/1/2013 7:36:25 AM (GMT-6)

Posted 10/1/2013 1:36 PM (GMT 0)
HI!

I have had all of the same symptoms as your little girl (plus some) ...minus the fever & loss of appetite (go figure, one symptom I could certainly benefit from I didnt get)

From what I've learned in the last 2 weeks that Ive been on this forum & researching Lymes is that the BB bacteria grows slowly and its about a 4 week growth cycle. Antibiotics only work during a certain phase of that cycle, which means they destroy the bacteria causing toxins. These toxins can build up and flare symptoms. So, maybe after your daughters 10th day the antibiotic hit the bacteria at the right time, killing it & causing the HERX.

Please research this info yourself, and if I am incorrect, someone please inform me, as I am so new to this and need all the information I can get.


Health & Blessings to you & your little girl :)
Posted 10/1/2013 3:07 PM (GMT 0)
I'm really sorry that you feel that way about this forum -especially since your posts have not gone unanswered - I'm not sure what else you expected?

I have no idea why your doc would have said, "She said that she should not have a symptom flare up if she is on the 'correct' antibiotic." Anyone who knows what a Herx (or Herxheimer reaction) is would wonder as well. A herx is what happens when the correct abx is being taken and there is a large die off of bacteria, which creates an increase in symptoms or even new symptoms to appear. (www.lyme-disease-research-database.com/coping_with_a_herx.html)

Band 41 indicates the tail end of a spirochete - a spiral shaped bacteria and there are a few of them - Lyme, Syphilis, Yaws and Pintas, and a couple of others - so I'm not sure at all why your doc would say it's from a virus.

And I definitely don't understand why a doc would balk at testing for the MTHFR gene mutation. I would understand if she had told you that until your daughter shows issues with not being able to detox, to hold off because of her age, but then again, it's a simple blood test, so why not?

And you can add in Homeopathy any time you wish, there have been several members here who have healed using Homeopathy all by itself. I used nothing but herbs and supplements to heal, as I couldn't take the abx.
Posted 10/1/2013 6:17 PM (GMT 0)
"I asked about homeopathy and she said not now. We are pulling out the big guns and homeopathy may come in handy down the road for maintenance but is not appropriate now."

You need to seek a classical homeopath if you want to use it for chronic problems. It's a lot more powerful than your doctor leads you to believe. Here's one place to look, http://www.nationalcenterforhomeopathy.org/find-homeopath. I'm not saying you should go that route, but just wanted to steer you in the right direction if you do want to go that route. I don't know if it alone would take care of all you problems or not, but it can do a lot.

I was very ill in my 20s and homeopathy turned me around. I had many Lyme symptoms, but it wasn't widely known about back then (over 25 years ago), so I don't know the cause of my illness. I do feel that is why I'm not having a lot of symptoms now that I have been diagnosed with Lyme.

Diet plays a big role too, so don't neglect that.
Posted 10/1/2013 7:58 PM (GMT 0)
I wouldn't hold back on homeopathy either if you feel it can help you. All support and extra help is welcome while treating for Lyme and co. I've seen how it can help people. It did wonders for my sister when she was a child.
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