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» LymeNet Flash » Questions and Discussion » Medical Questions » How do you clear lingering cognitive issues well into treatment?

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Author Topic: How do you clear lingering cognitive issues well into treatment?
ktkdommer
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My youngest, 17, I worry about the most. He was the sickest in the family and has made a ton of improvement after 2 years with an ILADS doctor, 9 months were on IV rocephen.

I have one year to get him college ready, even if only community college part time. He is currently on an IEP with significant memory and processessing issues. Life is hard for him despite feeling better. POTS is hanging around.

We travel to our doctor on Monday. I am wondering what I should ask for to help him. My one thought was to maybe try bicillin or at least biaxin. What could be added or changed to tackle pretty severe cognitive issues that started at age 13 and are lingering despite clearing of numerous symptoms?

He currently is on malarone, azithromyacin, rifampin, tindamax, ceftin and plaquenil. He also takes adderall XR, nystatin, effexor, propanalol, florinef and clonidine. He takes vit C, D, B complex, ginko, krill, oil, OLE, ALA, GSE, NAC, milk thistle, 5HTP, melatonin and NT factor. He will start Enhensa next week.

Is there something more specific we should try as far as an herb or supplement? Is there any testing that should be done?

He had a neurologist for years who was of no help. Is there any benefit to bringing one back on board?

Any comments or advice is greatly appreciated. My "little" one has suffered for so long.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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hopeful4
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Good question, which I wonder about, too. Your son has been through a lot!


Since hes still on so many medications, I wonder if some of the cognitive problems stem from the neurotoxins created by the die-off.

One thing that helped me quite a bit at the time my cognitive problems were the worst, was taking Cholestyramine. It binds with the neurotoxins and helps to flush them out. Its been about 5 yrs. since I took it, but I think it needs to be taken between meals and not at the same time as any medications or supplements, because it can reduce their effectiveness.

Another thing I wonder about for your son, is he treating for candida, as he is on so many medications. I see that hes taking nystatin. Is he also on a candida diet? No sugar, no/low carbs, no gluten, low glycemic vegetables, protein, probiotics. Try this website: www.thecandidadiet.com


Best wishes in finding the key to help your son.

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Lymedin2010
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IV Rocephin great but not quite as good as the combo of Doxy with Biaxin, has been the best combo for me. I wonder how well all three would work, I would imagine great.

I had brain fog and extreme head and neck pressures, burns and pain.

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Maryland Mom
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Was the neurologist Lyme literate? That could make all the difference.

Dr. J treated several of my kids for years, and I know he often recommended neuropsych testing with a Lyme literate neurologist for his pediatric patients with significant cognitive issues.

Your son may certainly be in need of further antibiotic treatment, but no one one this board is more qualified than your LLMD to decide what meds are best. I would ask, however, about focusing on combos that are effective in crossing the BBB. Also, have all possible co-infections been addressed?

Discuss other detox methods with your LLMD; the cholestyramine that hopeful suggested has helped many.

In light of the cognitive issues, I would also check B vitamin levels, esp. B12, and maybe consider something more aggressive than nystatin for yeast to see if that makes a difference. Nystatin's actions are mainly localized in the GI tract, whereas diflucan is a systemic antifungal capable of crossing the BBB.

Sometimes, even if you are doing everything right, getting completely well can take a long time. I know it's hard to go through, I've been there with my own kids. Two of my kids lost a whole year of school due to illness and cognitive issues from Lyme. One is now a college graduate, and the other is well on her way. For a while, though, I had concerns about how they would make it, because like your son, their treatment took years.

Hang in there, and be willing to be flexible about options concerning long term plans like college. I would also look into what special accommodations are available at the college level, if necessary.

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Love my kids
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Neuro Antitox II cns/pns by Jernigan, Pinella by Nutra Medix, Piracetam and L-ornithine is what my doc just added to my regimen. My biggest complaint lately is brain fog, memory, spitting words out.

BUT, they also changed me from Fluconazole (diflucan) to Ketoconazole. THAT made a huge difference in the brain fog.

Also, isn't Dr. F in NY the neuro LLMD if you wanted to get a neuro guy involved again?

Good luck.

--------------------
Healing thoughts to you,

L.

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smiles132002
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There are actually scripts that you can take to increase brain memory/function. I forget what they are called, but I was on them for a while. They are non-addictive but in a different class then adderol. A lot of people in europe use it and a lot of college kids that are super bright/genius level and don't want to mess with adderol.

But for me-IVIGG is what really got my brain working again. I too did Rocephin 2006 for 18 months and then again in 2010 for 13 months. While it did help my brain, for some reason the IVIG has just completely opened my brain back up. I started reading books again, I can have conversations and even be sarcastic/funny. I am very social but I remember when I was very sick I had a hard time in social situations because I couldn't follow conversation let a lone recall the words to contribute.

Anyway-the IVIG is tough-it's long and exhausting-3 days a month for 8 hours a day-but my LLMD and I think what is happening is that I am herxing during/after the tranfusion-and because it's boosting my immune system-and combine with oral antibiotics it's really just killing those bugs and making me healthy again...now I have no proof of this except my own experience.

Hope this helps.

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sixgoofykids
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When I treated parasites my head cleared. If he was the sickest, it's likely he has them. I felt better after a couple weeks, but it took me many months to actually get rid of them all.

Also, check out this article - http://www.healthcentersofamerica.com/information.cfm?id=140

It can be bartonella if CNS symptoms are out of proportion to Lyme symptoms according to the article.

--------------------
sixgoofykids.blogspot.com

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ktkdommer
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Great info everyone. I am VERY appreciative. I will be busy today investigating everyone's input and recommendations.

My youngest eats like he is feeding a parasite. He tested positive for bart and has been treating it. Many of the behavior issues cleared up with IV, but not cognitive issues.

We were serious about no sugar at his sickest and have let up a bit. Still no sugar in the house, but at 17, he seeks it out when he is away.

Adding a binder makes sense. I started chlorella in January and feel much better. I had definite symptom flares while working up to full dose.

Neurotoxin die off makes plenty of sense. I hate that he is on so many meds. It is ridiculous really. He simply fell apart in 2010 and nothing in his body worked correctly.

Should I have him tested for parasites, or just treat?

There are no neuro friendly docs in Ohio because we don't have Lyme.

He doesn't show signs of yeast like I do with thrush at times but I will ask about doing something more anti-yeast.

I feel so much better about Monday's appointment just knowing that I know what some possiblities are to help my son's cognitive issues. We have a good doc, but I like to be in the know. Sometimes the alternative treatments aren't always discussed.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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sammy
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Since he is getting better I would ask about the necessity of effexor, propanolol, and clonidine

I understand that the effexor may be used for sleep or pain relief. It can be used for many other things besides anxiety or depression. This would be the first med that I would suspect may be contributing to the congnitive difficulties and drowsiness.

Propranolol and clonidine are clearly prescribed for his heart/blood pressure problems. Could the doctor try lower the doses? These meds also cause fatigue and mental slowness.

All of these things together contribute to the problem. It is difficult when you need the medicines because then you must deal with the side effects.

If you are ever interested in seeing a complete list of side effects, Rxlist.com is a good resource.

At least you can talk with the doctor to see if it is time that you can start to try to wean him off something. Maybe that will start to bring him back a little to his old smart self.

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ktkdommer
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Thanks Sammy. We have tried in the past but always symptoms of dizziness, passing out, or migraines return.

I will ask at our appointment about lower doses. I do use rxlist.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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jackie51
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What do you mean by "he eats like he's feeding a parasite"?

No one mentioned gluten. Is he gluten free?

I didn't notice any magnesium in that list either though it wouldn't help with brain fog as far as I know.

Not necessarily wanting to add any more drugs to a very long exhaustive list you have there, have you ever tried byron white? These drops have some detoxing effects which I've found helpful to break barriers in treatment.

Anyways, good luck.

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ktkdommer
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My son is taking The Core for KPU so not adding extra magnesium.

He is not gluten free. He is 17 and ****ed he is sick and not in control of anything. Getting rid of sugar and pop was hard enough.

My son is always hungry and eats large amounts. It shows in his weight. For a while it got better with babesia treatment and now he seems ravaged all day long.

We have not tried Byron White. I will bring it up with the doctor.

Thank you kindly!

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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sammy
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Bummer Kari, If your son is passing out and such then it is not time to try to wean him off the heart/BP meds. I understand what it's like living with autonomic dysfunction symptoms, not fun.

Since that is not an option, you may ask your doctor about trying LDN. That may help. I was originally prescribed this for help with inflammation and cognitive symptoms.

I also take Namenda. It is usually used to alzheimer's patients but there are LL neurologists that prescribe this to help with memory and cognition. My LLMD described the physiological way that it works for Lyme patients but that was a couple years ago and my brain is tired right now!.

Anyways, I did notice that it helped when I started taking it. I am only in my 20's so it was especially disturbing to excel in college and at work then struggle so much as my cognitive function declined as I got sicker.

I still have major problems with attention span. The Namenda has helped some with the brain fog and some memory. If I could focus and pay better attention I might remember more!

Your doctor knows your son and his medical history well. We can only give ideas. Good luck with your appt on monday.

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ktkdommer
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Our doc is willing to try LDN as I have been on it. I got so achy on it and quit. Meant to start again but didn't want the aches.

I will ask about Namenda. I think he was going to try that from POTS doc but insurance denied it.

My son forgets to turn off the car and bring in the keys. He has lost 3 pair of glasses in 4 weeks. His phone is a constant source of angst.

He was very bright and it all changed. His IQ dropped from gifted testing and his processessing speed is over 30 points below that. He is on an IEP now. It all sucks!!!!! You know as you have the same changes.

Have you tried Adderall XR? He uses it and can tell the benefits.

We will get there, some day!

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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AuntyLynn
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I think you will need to help him repair his damaged myelin sheath. (the covering on brain nerve cells)

One of Dr. Burrascano's supplements (NAC?) is designed for this.

But PLEASE WATCH this amazing video by Dr. Terry Wahls, who fed her mitochondria to regrow her brain cells, damaged by MS.

http://www.youtube.com/watch?v=KLjgBLwH3Wc&feature=share

Another poster here, Carol in PA tells us about NT factor (maybe this was Dr. B's supp?):

That article has a link to an article about repairing mitochondrial function with NT Factor. This helps fatigue.

http://www.prohealth.com/library/showArticle.cfm?libid=15150

Repair Damaged Mitochondria and Reduce Fatigue Up to 45%

- by Karen Lee Richards, August 6, 2010

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ktkdommer
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Thanks Lynn! The video was amazing.

My son is taking NAC and is on NT Factor. He doesn't really have fatigue issues anymore.

Does anyone know the correct NAC dosing for Lyme?

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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WPinVA
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I can't add much - you have been through so much more than I have. But on the POTS angle, I was wondering if he ever tried Thermatabs?

Thermatabs helped me so much. Before starting them I couldn't stand up for more than a minute without leaning against something. Then soon after starting them, I was standing in a line and it suddenly hit me that I had been standing there for several minutes. Amazing.

After about six months of taking them, my blood pressure returned to normal.

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sammy
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NAC dosing should be 1200mg twice daily. This is the dose that will help if your son has the CPN infection also.

Jarrow makes a sustained release tablet form of NAC. This form gives your body more time to absorb it (If I remember correctly it is absorbed over about 4hrs compared to the 1hr regular capsules).

The NAC helps support the liver to make glutathione and it directly helps treat the CPN infection.

I have not tried the Adderall XR (or anything similar), my doctor does not want to add any "unnecessary" medicines to my protocol. He would rather have me continue trying endless amounts of supplements to support adrenals and relieve fatigue. Gets frustrating.

I forgot about NT factor. I actually tried it before my doctor prescribed the LDN and Namenda. I took very large doses for several months. It was extremely expensive. Unfortunately I did not notice any positive improvements so I had no motivation to continue it long term. I was disappointed. Sounded like a truly helpful supplement.

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sixgoofykids
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Parasite testing isn't very good. I tested positive for some bacteria in my gut, but negative for parasites. In treating the bacteria, I passed worms even though I tested negative for them.

--------------------
sixgoofykids.blogspot.com

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ktkdommer
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My son did try thermatabs. They helped back when he had more neurocardiogenic syncope issues than when he has postural orthostatic tachycardia syndrome.

I will order the time released NAC.

I think our doc will be able to help with parasite treatment. If not, there is enough information on this site to follow.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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mlg
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Hi,

I have a suggestions which helped me with my brain fog. I got a tip from a person in my support group. He said his brain fog came from Babesia or babesia like organism. He recommended a book that I just ordered. I have not read it. But I tried it last week and it helped tremendously. I did about 1600mg of plain Artemisinin. I also added grapefruit seed extract to it. I did this for 3 day on and 4 days off. No sugar while taking it and tried for not antioxidents on those days and the days off I got my antioxidents.

I am also taking Mepron, Zithromax, Septra, herbs, supplements, etc. I would ask your doctor or a doctor or check out the book.

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ktkdommer
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Thanks mlg.
Can I do this combo with Zhang's 2 artemesia? I really don't hear much about babesia and brain fog. It would make sense since that is a definite issue for my youngest right now. He has been doing art for 2 years, pulsing 3 pills a day for 10 days.

Do you know the title of the book?

I did order Humaworm for youngest and I. Should be in the mail tomorrow.

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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CD57
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bringing this back up
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Tracy9
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IV was the best and only way to clear cognitive issues for my whole family. It takes longer than 9 months in many cases; often up to a year and a half. I would say he needs more time on IV.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Tracy9
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You really need to cross the blood brain barrier and kill the spirochetes to get rid of the cognitive issues.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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