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New Lyme Symptoms with more aggressive treatment


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My son is finishing 3 months of LYME/Bart treatment. The list is long on supplements and detox but here is what the abx is: Azithro/Bactrim/Flagyl

 

Intially great things were happening but lately the sound sensitivity is horrific but unusual. He will scream as though in pain or distress if he hears a baby cry. I literally have had some public situations in the past few weeks where I had to rush him out of stores in a panic because he cannot handle babies crying. Yet an ambulance can pass him with sirens or a loud motorcycle and nothing. No screaming. My son is 7 but I read an article once about a woman with chronic lyme that could not stand the sound of babies and wouldn't go anywhere anymore so I have to assume this is lyme. Are we going to past this symptom? Has anyone else experienced this whether adult or child? Makes me worry theses bacteria are getting more agressive the more we treat.

 

The other symptoms that are pretty severe right now are: Itching mostly on lower legs, feet and back and its all day all night very annoying for him. He is exhausted from the itching.

 

Also he is having food refusal which I now believe is OCD I initially thought it was tummy issues, but it is clear to me know its OCD.

 

Now he also has PANDAS from chronic strep infections and since had his tonsils removed. His older brother has PANDAS and is in need of having tonsils removed they are now touching. Both of them have been on longterm abx PANDA care for nearly two years, but they could be triggering each other.

 

I know some symptoms overlap to PANDAS but not the itching, lymphnode big right now behind his right ear and he walks like a drunken sailor when he wakes up in the morning because of heel pain.

 

Any advice to help alleviate pain? I use IBU. Will arnica help topically on heels or pellets? I am losing track if we are moving forward or going backwards because he cycles more frequently now. Sorry for the rambling just need to get this posted asap its already a crazy stressful morning with him.

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I'm so sorry---

 

What are you doing for detox?

I have had both the crazy, maddening itching, and a lump come up on the side of my neck-

My LLMD at the time said I wasn't detoxing enough-

was put on cholestrymine powder (binder, prescription) and the lump went away. Other binders are charcoal, bentonite clay (away from everything, sure you know all this)

Keep the bowel moving...

 

For the itching, I took Epsom and dead sea salt baths every night- honestly, natural anti- itch creams did not help me, I did buy off the shelf hydrocortisone 1% cream- I think it helped a little-

the itching phase passed.

Currently I do milk thistle, glutathione, NAC, a little ALA, and go on and off the Epsom salt baths for detox. If I'm feeling really bad, Banderol and parsley drops, homeopathic drainage remedy, alka seltzer gold.

 

Hang in there---

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The only itching problems we had were due to hives resulting from an allergy to bactrim. The itching cleared as soon as we withdrew that Abx. DD10 was switched to biaxin instead and hasn't had any itching problems since.

Edited by rowingmom
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The only itching problems we had were due to hives resulting from an allergy to bactrim. The itching cleared as soon as we withdrew that Abx. DD10 was switched to biaxin instead and hasn't had any itching problems since.

 

Itching can also be a sign of parasites. Just thought id mention it. I remember the feeling of not knowing if we wereoving forward or backward especially w tindamax, similar to flagyl. Hang in there it does get better. Make sure you check his room for high EMFs or turn the power off to his room. High frequency is not helpful for Lyme. We discovered that my sons bed was off the charts 18 months into treatment. Wish I had known earlier.

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My son's doc. said no cortisone creams etc. if he has lung problems. He uses UNDA 270 Ointment/Pommade (homeopathic cream) for rashes.

 

Interestingly, ds's lymph #'s have been constantly high throughout his treatment. Dr. said "systemic toxicity." So have been detoxing for 20 months now so far! Chlorella/salmon oil is his current detox protocol. Has used clay, detox deoderant, epsom salt baths, detoxamine suppositories, to name a few.

 

Just an FYI, yesterday I had heal pain and was able to get rid of it by massaging behind my ankles.

Edited by JuliaFaith
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IN early days of autism when he was very sick, my son too was extremely bothered by crying babies. Covering of ears for other noises too but particularly upset by crying babies. This would come and go and I always associated it with inflamation/detox. Once we found something to halt inflammation, this symptom improved.

 

So I would wonder if the toxins liberated from lyme/bartonella treatment for 3 months have increased inflammation? Kind of like my friend who started eating healthy and juicing and he caused a detox crisis in himself becoming very sick.

 

I like the items suggeted for detox by prior poster. For now, we are only using charcoal, epsoms salts, liver life. I want to ask abot Cholestyramine ?sp?.

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Thank you all. I do think the itching could be parasites as well since this was a major symptom prior to adding the bactrim and flagyl does help after we pass the second day of die off. Also he has the chronic constipation for years since infancy and keeps getting worse not better. What complicates matters is that my son has autism so he has difficulty articulating his symptoms. His older brother helps because they do share some of the same symptoms and he is wonderful at giving me details on the symptoms.

 

For binders and detox: I use charcoal daily 2 hours away from all abx and epsom salt baths nightly. I believe high dose vit c, pycogenol help detox and I rub LDN cream and Glutiathione cream on his ankles nightly. Clearly its not enough. I also put aloe vera juice in his water daily 2 oz its supposed to detox and be an antioxidant.

 

He has slow slow slow bowels currently have him on a protocol with miralax daily, dulcolax script, and his usual magnesium. Gastro doc said try miralax and dulcolax briefly because she felt the amount of magnesium I was giving him would be harder on his kidneys and liver than the lax products. So I reduced the magnesium to just a 50mg chewable with b6. I was giving 500mg of citrate or glycinate.

 

I have my mommy intuition always going back to thinking he has lyme in the gut resulting in lyme gut palsy. Just my own theory DAN doc, and LLMD do not give much credence to my theory.

 

I am not versed in tinctures yet and LLMD said we are not there yet. So if you have any product ideas please advise. I also give olive leaf extract daily and always noticed this has helped.

 

The mornings are tough until all the dosing starts working then he usually has a good day until the evenings when it gets tough again as he gets tired. Just itchy, grouchy, rigid, doesn't want to go anywhere but once we get him to go usually has a good time unless he sees a baby he anticipates crying and starts covering his ears. I might try putting headphones on him with nano and see if that will provide comfort for our public baby crying situations.

 

Thank you all for your support.

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S&S,

Lots of good suggestions I can research. What is a homeopathic drainage remedy? Will it help the swollen lymphnode behind his right ear? I would love to hear more if you could please. Thank you.

 

 

I'm so sorry---

 

What are you doing for detox?

I have had both the crazy, maddening itching, and a lump come up on the side of my neck-

My LLMD at the time said I wasn't detoxing enough-

was put on cholestrymine powder (binder, prescription) and the lump went away. Other binders are charcoal, bentonite clay (away from everything, sure you know all this)

Keep the bowel moving...

 

For the itching, I took Epsom and dead sea salt baths every night- honestly, natural anti- itch creams did not help me, I did buy off the shelf hydrocortisone 1% cream- I think it helped a little-

the itching phase passed.

Currently I do milk thistle, glutathione, NAC, a little ALA, and go on and off the Epsom salt baths for detox. If I'm feeling really bad, Banderol and parsley drops, homeopathic drainage remedy, alka seltzer gold.

 

Hang in there---

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Hi- well, sounds like you are doing a stellar job getting all that stuff in and on. So hard with kids, I know.

 

The brand 'Penka' makes some good drainage remedies (the 'big 3')

I have here

Antitox Gentle Drainage, and,

Penka Itires (lymphatic drainage)

 

I'm not saying they're magic potions....you know, nothing's that easy with all of this.

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Thank you all. I do think the itching could be parasites as well since this was a major symptom prior to adding the bactrim and flagyl does help after we pass the second day of die off. Also he has the chronic constipation for years since infancy and keeps getting worse not better. What complicates matters is that my son has autism so he has difficulty articulating his symptoms. His older brother helps because they do share some of the same symptoms and he is wonderful at giving me details on the symptoms.

 

For binders and detox: I use charcoal daily 2 hours away from all abx and epsom salt baths nightly. I believe high dose vit c, pycogenol help detox and I rub LDN cream and Glutiathione cream on his ankles nightly. Clearly its not enough. I also put aloe vera juice in his water daily 2 oz its supposed to detox and be an antioxidant.

 

He has slow slow slow bowels currently have him on a protocol with miralax daily, dulcolax script, and his usual magnesium. Gastro doc said try miralax and dulcolax briefly because she felt the amount of magnesium I was giving him would be harder on his kidneys and liver than the lax products. So I reduced the magnesium to just a 50mg chewable with b6. I was giving 500mg of citrate or glycinate.

 

I have my mommy intuition always going back to thinking he has lyme in the gut resulting in lyme gut palsy. Just my own theory DAN doc, and LLMD do not give much credence to my theory.

 

I am not versed in tinctures yet and LLMD said we are not there yet. So if you have any product ideas please advise. I also give olive leaf extract daily and always noticed this has helped.

 

The mornings are tough until all the dosing starts working then he usually has a good day until the evenings when it gets tough again as he gets tired. Just itchy, grouchy, rigid, doesn't want to go anywhere but once we get him to go usually has a good time unless he sees a baby he anticipates crying and starts covering his ears. I might try putting headphones on him with nano and see if that will provide comfort for our public baby crying situations.

 

Thank you all for your support.

We are seeing a naturopathic doctor who recommends five days of oregano oil (p73 at whole foods) to treat parasites. She says to take ten drops in water am/pm. It kills other stuff too and can cause a herx. She says she gives it to her kids a couple times a year to get rid of any parasites. Probably can't hurt.

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My son's stomache was really bad at the start of his treatment. Dr. said that charcoal was hard on the stomach so did not prescribe it to him. Also know that clay can slow down bowels for some.

 

"I have my mommy intuition always going back to thinking he has lyme in the gut resulting in lyme gut palsy. Just my own theory DAN doc, and LLMD do not give much credence to my theory."

 

Listen to your intuition, you could be right. Our dr. believes that lyme can be anywhere in the body. Seems like I heard they are attracted to fat and scar tissue.

 

My son has gone thru 3 rounds of different treatments for parasites in the last 20 months. I have figured out that when he starts biting finger nails it is time for another treatment. Without me even saying anything, the dr. picks up on it and prescribes another different treatment!

 

Dr. also listens to 'mothers intuition' as she feels strongly about it being an important part of the treatment.

 

Best wishes.

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I've had horrible itching.... sometimes it even felt like a bug bites under my skin and then the itching was followed by little sores. I restarted antibiotics in April and two weeks later the itching began and is just now getting better. I was so sensitive to the itching my hair could not be touching my back or shoulders. I thought it was Morgellons, LLMD felt Staph but no one was completely sure. I took a ton of epsom salt bath, used salt scrubs and aloe to help topically. I finally resorted to steroid cream for relief and it helped but did not fully resolve problem.

 

I've been working on a different form of detox since restarting antibiotics. I think this type of detox along with antibiotics really brought a lot of stuff out. Anyway.... I am now detox'ing with anything that addresses oxidative stress or getting more oxygen to cells: oxygen/ozone drops, chlorophyll, MSM plus binders to mop things up and will be adding PEO parent essential oils verses Omegas soon. I've posted detox drink previously and I drink it twice daily.

 

I would consider adding MSM but it comes with a huge warning to go 'low and slow'.... If the herx is survivable the gains can be tremendous. I think the two supplements that have helped me the most throughout this journey has been the regular chlorophyll in detox drink and MSM..... both will address oxidative stress. As a reminder, I've been consistently working on methylation for over 2 years, was treated for KPU last year and have always had a strong detox regimen in place. MSM will treat parasite and nematodes. Everyone in the family is on MSM but recently started the twins and they responded with mood liability that included rages that started within 24 hours, stomaches, headaches and fatigue. One twin never had rage as a symptom.... thankfully, I think we are through the worst of the herx. Both my older son and I have sulphur allergies and are fine taking MSM. MSM it is a natural sulphur.

 

Here is the information. I have posted link before: http://www.msm-info.com/

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I also meant to add the bactrim is a sulpha antibiotic and is very effective at treating Bartonella. If the issues are Bartonella related the MSM can really help fight it as a natural sulphur in addition to current antibiotics. It will also help with your DS ongoing constipation but expect stomach aches and gassiness initially if you try it.

 

I had my first Bartonella rash 48 hours after starting MSM.

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Sorry, lurking from PANDAS side ....

 

our ped recommended diatomacious (sp) earth (food grade) for parasites. I was wondering if anyone has had good results. Our ds 4 also itches terribly, especially at night....

Edited by dut
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My son's doc. said no cortisone creams etc. if he has lung problems. He uses UNDA 270 Ointment/Pommade (homeopathic cream) for rashes.

 

Interestingly, ds's lymph #'s have been constantly high throughout his treatment. Dr. said "systemic toxicity." So have been detoxing for 20 months now so far! Chlorella/salmon oil is his current detox protocol. Has used clay, detox deoderant, epsom salt baths, detoxamine suppositories, to name a few.

 

Just an FYI, yesterday I had heal pain and was able to get rid of it by massaging behind my ankles.

 

 

Heel pain is a symptom of bartonella. I had it, and didn't know until the LLMD asked me.

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