posted
So after 10 years of odd illnesses and going to every dr and multidisciplinary hospital and having every drug and diagnosis given to my 16 year old son, a bright dr decided to check him for Lyme testing through IGeneX. He had a SPECT scan done and he has hypoprofusion in his left temporal lobe and what appears to be basically something viral throughout the scan of his brain. In the past year he started sleeping 12 to 14 hours, eyes, tongue, head, arms and feet started to have odd tremor, tested positive for babinski sign, getting lost was the worst, partial complex seizures, depression, yawns w a weird hiccup, headaches, heat intolerance oh I could keep going and on top of that he is in a flare for Ulcerative Colitis. He has always had trouble with fatigue but things got worse 10 years ago after he got the flu. The doctor is going to start him on Nizonide (alinia).. He tested positive for Babesia duncani FISH, Igm at 160. He did test positive for microti IFA IgM at <40 only which they said was negative, and was indeterminate *31 and *41 on Lyme western blot so they are retesting him with a more sensitive test. His short term memory is terrible and the fatigue is through the roof. My concern is that if he feels like this now, how is he going to function with the nizonide. They are starting him at 500mg daily and working up from there. Is there anything that we need to be looking for as far as side effects or Herx if that comes about and why the heck wouldn’t it. We’re pretty sure this is what’s causing his symptoms from years ago and it’s been slowly short circuiting his brain. Dr said he looks like an 80 year old dementia patient.So any thoughts would be most helpful. Hes prepared to do whatever it takes to get some control back. Oh but he looks great said most doctors. He’s been dealing with this for so long I’m pretty sure he doesn’t know what it feels like to be normal. He does have depression but his Prozac helps with that as well as muscle weakness.
Posts: 8 | From , florida | Registered: Mar 2018
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
HI Bruce's mom.
Is the MD your seeing a Lyme MD (a member of ILAD's).
I think you have to start slowly but I'm not sure if the Alinia will hit the Lyme borrelia.
Mepron and Zithromax for the Babesia and then a drug for the Lyme. Tindamax was the one that got rid of my daugher's neurological symptoms.
Good luck.
Also, just because you don't have any positive Lyme bands doesn't mean its not there.
Even at Igenix my daughter never tested positive (she had various bands, just not at the same blood draw test.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thanks Tim He deals with complex neurological problems and hes the first to recognize the seriousness of whats been going on. He said that the Nizonide (Alinia) will hopefully get rid of the Babesia but it wont be easy and as I look through and read a lot more it doesnt seem to get rid but to knock it down and maybe go dormant for awhile depending on how long you take your medicine. Dr also said it will be harder if the test comes back positive for Lyme. He may of skipped over the Mepron due to how much depression Bruce showed on the scan. Right now Bruce is taking Prozac and its working very well for him its just everything else.. that is and has been falling apart. So much to learn
Posts: 8 | From , florida | Registered: Mar 2018
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bruces mom,
Sorry to hear about your sons and your situation.
I can't provide more (extremely tired) help at this time, but here is some herx info you asked about.
posted
Thank you so much. Yes I understand. My son is having a hard time right now with fatigue, it’s so hard for him and for all who have this. I wish I could do more.
Posts: 8 | From , florida | Registered: Mar 2018
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posted
Brucesmom, my heart goes out to you both. We went through it too and if we could do it all over again the first thing we would do is mind the diet better- as in - Paleo Approach to Autoimmune. Sarah Ballentine wrote the book and it was a life saver.
Basically:
Book: The Paleo Approach to Reverse Autoimmune Disease and Heal Your Body by Sarah Ballantyne PhD
Eat 100% grass fed meats/organs, low sugar veggies and fruit (berries), olive, coconut and avocado oils. Sweet potatoes.
Avoid grains, legumes, dairy, nuts, gluten, gluten free products, sugar, nightshades (white potatoes, tomatoes, bell peppers, eggplant). Don't eat the skins of the sweet potatoes.
We had to be careful with not eating a lot of fat because the liver wasn't working as good as it could have been. Too much fat made the liver feel congested.
Everyone is different.
What happens in the kitchen is crucial because food can inflame or heal. Eating inflaming food is like putting out a fire with gasoline.The wrong foods inflame the brain and can make one feel so tired.
All the best to you and your son. It is possible to feel a lot better! That's the good news!
Posts: 764 | From Northwest | Registered: Sep 2014
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posted
Thank you, since he has GI issues we are very careful about what we eat. Right now he is on Enteral feeds to quiet the gut and so far it’s working since his flare has quieted down since being in the hospital. He has stopped bleeding and yes I know prednisone is bad for you but for him it’s the only way to reduce the flare without being on some of the harsher black box medication infusions that make all his neuro symptoms worse. I hate prednisone but we are trying to go as fast as we can to taper but not so fast as to restart the flare. His GI dr is just exasperated with his situation because neurologically he can’t give him any of the bad stuff that we had him on years ago. This infuriates me because we didn’t know that all his neurological problems were due to Babesia duncani and perhaps Lyme as well if not more. All doctors had said it’s was functional - it only took him to start with tremors through out his body, babinski sign, SPECT scan and seizures to get someone’s attention that it was neurological.
I have been working on this for 10 years. Ten years and neurological problems that actually showed as concrete evidence and they still didn’t not know what to call it. “Oh we can treat the symptoms cuz we might never know what this is ” crap. Sorry for the rant.
I’m so tired of drs who throw meds at patients and not really pay close attention to what’s being said. It took 10 years to finally figure this out, so it makes me wonder if he got help sooner he wouldn’t be where he is today.
Posts: 8 | From , florida | Registered: Mar 2018
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posted
I’m trying not to worry about the herx until it gets here but his neurological problems are really bad. There have been times that he was unable to walk and then 5 min, 2 hours or a couple weeks later he could. His body had aches and pains and muscle pains and weakness. The good news is maybe this will help the Ulcerative Colitis and that will go away. So thanks to everyone who gave input.
Posts: 8 | From , florida | Registered: Mar 2018
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I liken this "trying to heal from stealthy stuff journey" to going on a whitewater river rafting trip without having experience, safety equipment or a clear cut map. Maybe even 10 different maps are at the fingertips and all of them saying opposite directions.
Thank heavens for Lymenet. For getting input and researching...and for ranting!
posted
Hi, Zithromax with Mepron also was always on rotating herbs artemisinin then rotated crypto. After specifically treated for Babesia for 8 months I did Dr C antipatasitic rotation then Dr K rotating anti-parasitic rotation. You need heparin or Bolouke to thin out the biofilm. I juiced some days, probiotics, raw garlic swallowed in capsules, lemon water some days in the morning, some mornings coconut water, probiotics everyday. You need a good LLMD and combination of ND or DAN! Doctor or detox yourself with juicing castor oil packs, infrared sauna, PEMF. I also found an LLMD psychiatrist that helped with thyroid medicine. The thyroid medicine helped with fatigue. Maintenanced with oil of oregano afterwards. Believe it could be babesia like organism and other co-infections.
Posts: 697 | From CA | Registered: Dec 2011
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