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06/02/2012 05:09 PM

NDPH TBD Borrelia, Babesia, Bartonella

Jensen16
 
Posts: 754
Member

Hello MaryR and NDPH Friends!

MaryR held my hand through some very terrifying times. Thanks MaryR!

I'm writing this for you. I do not want what happened to my kid to happen to anyone. Although if you have NDPH, it might be too late for an easy kill. Don't let it go for years, if it's Lyme disease, the longer it goes, the worse the outcome.

My teen got sick Sept 2009. Series of increasingly confusing and confounding symptoms and illness, series of doctors, diagnoses and treatments. None made her better. The last one before Lyme Disease was NDPH. She fit the syndrome described by Lee and Rosen perfectly EXCEPT that she had lower GI problems no upper GI complaints, presisstent LUQ abdominal pain and abnormal bowel movements.

About 2-3 months after NDPH dx, she started showing more neruological problems, cranial nerve changes (palsy, veritigo, hyperacusis, tinnitus) and peripheral neuropathy and demyelination on nerve conduction test, MRI negative, Brain SPECT mild hypoperfusion in localized regions (similar to Fallon papers).

Toothfairy55 found me here trying to learn about NDPH. She told me ..."it isn't NDPH, it's LYME, NDPH is a symptom of Lyme Disease...", she also suspected Bartonella b/o symtpoms. She had/was going through the same thing my kid was, she was just ahead of us.

We finally found a reccomended LLMD, found Borrelia, Babesia and Bartonella. But by that time the disease was in the late phase. Treatment was started Feb 2010 and was effective, but more slow than anything else we have ever seen. It takes years on combination antibiotics and supplements are needed to suppport the body. And we are not sure she will ever be able to get back to where she was before she got sick.

The doctor has to have alot of experienced, a well developed medical intuition as well as indepth knowledge of the pathogens and disease in order to guide you through this mess. These doctors are not easy to find and they are not where you'd think they'd be.

We got lucky and got a good one. He's seen my kid to 2 magically pain free remissions, but they haven't lasted and she's also seen 2 catastrophic relapses. The first relapse was my fault, she had been doing well for about 2.5 months, so I asked to start backing off the antibiotics...HUGE MISTAKE...full relapse within a week. I kept my mouth shut the next time, and she stayed pain free longer, but there was a relapse about 10 weeks after doctor started backing down the meds.

It looks like she may be entering into a 3rd remission at this moment...hopeful...

If you have NDPH, it wouldn't hurt to check and make sure you do not have Lyme Disease and co-infections.

See free movie: Google "HULU Under Our Skin"

Read Dr. Burrascano's "Advanced Topics in Lyme Disease:

http://www.lymenet.org/BurrGuide200810.pdf

Visit National Capital Lyme:

http://www.natcaplyme.org/

Visit ILADS:

http://www.ilads.org/lyme_disease/about_lyme.html

Read the book "Cure Unknown" by Pamela Weintraub

There is a MDJ Lyme Disease Support Group. Ask BettyG for LLMD list and tips!

Last I talked to Toothfairy, she was pain free and moving on.

I hope my kid can do that too!

Be well,

Janet

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06/02/2012 06:56 PM
tortoisegirl
tortoisegirlPosts: 3247
Group Leader

Thank you for sharing all this great info with us. There have definitely been some similar cases here to your daughter's. Cost seems to be a big factor in Lyme diagnosis/treatment as often the Lyme literate doctors don't take insurance, insurance won't cover the fancy lab work, etc. Do you have any comments on the safety of long term antibiotic use? Its been a discussion topic here before that we haven't quite "solved", as the opinion is drastically different between a typical doctor and a LLMD. Best wishes.

06/11/2012 08:33 PM
Jensen16
 
Posts: 754
Member

It's better if we did NOT have to use antibiotics, but the antibiotics are what turned the disease around from completely debiliating unrelenting pain to 2 remissions that were pain free. but also had 2 relapses with pain, the first realpse was my fault, I asked if we could redcue abx too early, full relapse within a week.

Overall she is much better now than in 2009/early 2010, but still not ok yet. Her headache did not return on this last relapse (Sept 2011). She has had 3 episdoes of headache free, the first remission, the second remission and now during this last realpse (knock on wood!!!). I don't think we woudl have gotten to this point withou the abx.

EVeryone person is diffenrent and all medical treatments have risks you have to weigh. To mitigate the risk from antibiotics destroying gut backteria, we used both high qulatiy probiotics and Florastor everyday, as time went on more liberally (as Pam Weintraub noted in her book), kept a "clean" diet (no sugar, no bread, lots green veges, lean meats, fish, fresh fruit) it's not what a teenager would like to eat and when she was doing better, we'd fall of the wagon some, but returned.

Last Oct she had extensive medical work up because of the realpse. THe work up included colonoscopy with biopsy. Colon was good, mucous membranes good. Other w/u negative for C.diff, celiac disease, stool culture negative. She had one scary yeast infection spring 2010, but it was controlled successful with nystatin and diet so that abx treatment could be resumed. She has been on comination abx since Feb 2010. Although this last time LLMD just used one abx, tindamax.

Board Certified Gastroenterologist dx "visceral afferent syndrome". It reads like NDPH, but instead of head, it's in gut. Same treatment: low dose amitriptyline, if not work increase to normal dose, if not work switch to topriamate, if not work switch to gaba. Lorazepam given, but that didn't work either.


06/12/2012 08:30 PM
tortoisegirl
tortoisegirlPosts: 3247
Group Leader

Thank you for the great info. Hope your daughter continues to improve!

Oddly enough probiotics made my gut problems worse...turns out I'm in a small group of people that since my intestines move so slowly (naturally & due to meds), they somehow aggravated the bacterial overgrowth I have. With all the meds we have in the US, there actually isn't anything currently available to speed up the intestinal tract. They are all either only available overseas or have been withdrawn. The couple meds that do something similar to this (such as Reglan) I can't tolerate.

Wow I Googled visceral afferent syndrome since I was curious and couldn't find much of anything about it--one of the top results was a post of yours here. Seems like they keep finding out more conditions that have been grouped into IBS or are exacerbating it. Finding out many of my gut symptoms are from SIBO has been so helpful for me. Best wishes.

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