No real improvement after 6 mos. (Lyme)

[rowingmom]

Rowingmom - You stated you always used Japanese Knotweed, do you think this helped?

 

I recently started my DS on it as well....up to 2 pills 3x a day, we use the pills from Green Dragon Botanicals.

 

Would you mind telling me which brand you use? pills or powder? how much?

 

thank you

His Mom

 

 

We started out using SourceNaturals resveratrol (made from knotweed, not grapes) and were using 1 cap BID.

 

Since moving completely to herbals we have switched to both a tincture (WoodLandEssence 1/4 tsp TID - $40 for 4 oz) and the organic powdered herb (1stChineseHerbs 1/4 tsp TID - $15 for 1lb - lasts 6 months - made into decoction). This seems to hold her at a good baseline.

 

If I find her herxing from protocol changes (we have recently readded A-Bart, and will be starting near ir sauna in a bit), an extra 1/2 tsp helps bring her out of it.

 

I'm not sure if this helped get DD into remission, but it's a good anti-inflammatory, especially for the brain (at high enough doses) which our kids seem to need. We have not used much ibuprophen because of the potential liver effects, and with her infections we will not be using steroids unless she is also on high dose abx. We are hopefully past the need for abx (but who knows), so we rely on knotweed and curcumin for inflammation symptoms.

 

I know we are still dealing with bartonella because she is herxing with higher doses of herbals, but right now she is in a good, functional, non-ticcing remission.

Edited October 6, 2013 by rowingmom

[rowingmom]

Tu4for,

We did a similar Lyme treatment plan. Cdc pos lyme and babesia.

My daughter was a mess. Very very severe.

Five years post onset, we finally have figured out what is wrong. We had come to the conclusion it was an autoimmune prob, after much "detox", iv abx for lyme, integrative med did not help that much. Steroids did. PEX did.

My daughter was found to have an underlying autoimmune disorder.

I gave up on the Lyme avenue when my daughter became so ill she would not take any meds or even let us access her picc line to flush it. We had no choice but to stop.

I thought it was the end of all hope for her. However, the change in treatment focus was precisely what was needed.

Like t.anna said, the recent Mayo Clinic thread may help you.

 

I will be interested in the treatment you receive for autoimmune encephalitis and whether you find an exacerbation of bacterial infections with the use of immune suppressing medications. Our daughter does have a positive ANA (speckled type) which indicates autoimmune reaction. Her lupus tests were negative. So I know there is an autoimmune component, which our LLMD says is related to the presence of borrelia. Her encephalitis symptoms resolved with bartonella treatment.

 

From http://www.medicinenet.com/encephalitis_and_meningitis/page2.htm#what_are_encephalitis_symptoms_and_signs

 

What is encephalitis?

Encephalitis is brain inflammation. There are many types of encephalitis, most of which are caused by infections. Most often these infections are caused by viruses. In addition to infections, encephalitis can also be caused by certain diseases that result in an inflammation of the brain.

 

What causes encephalitis?

Encephalitis is a rare condition that is caused most often by viruses. The leading cause of severe encephalitis is the herpes simplex virus. The very young and the elderly are more likely to have a severe case.

Exposure to viruses can occur through breathing in respiratory droplets from infected people, certain insect bites, and direct skin contact.

 

The signs and symptoms of encephalitis can range from very mild symptoms to potentially life threatening. Signs and symptoms of encephalitis include sudden fever, headache, vomiting, visual sensitivity to light, stiff neck and back, confusion, drowsiness, unsteady gait, and irritability. Loss of consciousness, poor responsiveness, seizures, muscle weakness, sudden severe dementia, and memory loss can also be found in patients with encephalitis.

 

I'm not trying to pick an arguement here, but do I understand that your neurologist thinks the encephalitius is not infection-based, but instead caused by another unrelated autoimmune reaction? And that the infections can be ignored and the autoimmune reaction treated as existing in a vaccuum, or are you treating with abx along with steroids/pex?

 

I know others here have healed solely by treating the autoimmune component. This treatment is unfortunately unavailable to us being out of country and paying out of pocket. When we started out with this mess, I would have done IVIG, etc. if it had been available, but it wasn't, so we ended up going down the infection path.

 

We are all trying so hard to help our children.

Edited October 8, 2013 by rowingmom

[PowPow]

I do not think you are starting an argument, rowing mom

You are right, we are all trying hard to help our children. That is exactly why I am glad I have a chance to explain what is working for my daughters.

 

My daughter is still on 1000mg Augmentin XR, from our PANDAS doc.

She is receiving Cellcept daily, for immune suppression. She has only been on it for about 10 weeks, so there may not be a whole lot of immune suppression going on yet. She received a flu shot last week, in preparation for the season. We have not seen any increase in any infections since starting this medicine or since she has been receiving IV solumedrol (though that is only once a month, so I think that would not affect immunity).

 

I have not addressed the chronic infection issue with the current neuro & rheumatologist that are now treating her. They did check myco. pneumoniae for her, and for our other, now recovered, daughter (14). They must see some reason to check that, so maybe they are looking for chronic infection. Those results have not come back yet.

 

This is the way I see it, and, I admit, it is not as far-sighted, as many parents on here.

 

My daughter was suffering. Severely.

We did lyme tx for over a year with a top LLMD ( was a board member of ILADS). My daughter even had a PICC line. She just got worse. Not herxing, just worse. Our LLMD even put her on steroids for a trial. They were low dose and made little difference.

What has helped my daughter(s) was high dose steroids, pex and then IVIG. (in that order)

 

My mom has crohns, my sister has AS, others in my extended family have other autoimmune diseases. I imagine there may be an underlying infection or trigger that started or allowed these disorders to continue.

I am grateful for the remission immune tx has brought my daughter and family members. I think that the time spent on searching for infection after infection (when labs say otherwise) may cause many to lose valuable time in shutting off the autoimmune process.

I do not think that autoimmune diseases occur in a vacuum. I am sure there are things that are causing them, and allowing them to perpetuate. I will be honest and say that I do not have the time or frankly, patience anymore (after 5 years of this, with 2 severely affected kids and 2 others more moderate + multiple other children who thankfully are not affected!) to do a gluten free or paleo diet, to cut out dairy, to meet with a homeopath on-line, to deal with complicated "detox" regimens.

 

The other thing that I am thinking, in short-cutting (perhaps, in some people's eyes) is that, really, we are doing the best we can with what we have. I saw what worked and what was not working.

 

Also, I am Catholic. I am hoping to get to heaven one day- where everyone has perfect bodies and all this lyme/pans junk is gone. There is something beyond earth and all our sufferings, so we are just all doing the best we can. That belief has helped me immensely when I start to stress about what is the right path here. I am not trying to preach, just explain why I am learning to let some of this go and be grateful for the progress my daughter has achieved.

 

Not sure if that answers what you were asking, Rowingmom. I am so glad to read your signature line, that she is doing so well. That is awesome!

 

I know that I come across anti-lyme treatment at times. or all the time. I just want people to know that there may be more than one way to remission in this disease. And if lyme treatment is not working, perhaps pushing it more and more is not the right answer.

i am glad for the opportunity to explain a little more about my position on this subject.

[dcmom]

Agree with pow pow-

 

Immune treatments are what worked for my daughters as well-

 

I have no doubt some rogue infection (strep for us) started this- but I do not believe- nor have we found any real evidence, that chronic infection is an issue.

 

We have used PEX, oral steroids and I've steroids - they are what have worked for us!

[rowingmom]

Thanks PowPow and dcmom for your input. I know it's important for me to keep an open mind, and you along with TAnna, are doing just that

[Hopeny]

And she is being treated for those with Mepron, a-bab, a-Bart, Zithromax artemisinin. Is there something else I'm missing? She has been complaining that she doesn't feel we'll..stomach, etc.

We have been using Rifampin/Zith combo, plus supps and some cowden herbs, for almost a year now for Bart with psych symptoms. DD9 has Lyme & Co, PANDAS with the strep component, Mycoplasma along with an underlying immune complement deficiency (options for this would be IVIG). We saw a slow but significant improvement with Rifampin. We are now in a tweaking phase. DD9 is mostly well however recently had mentioned some suicidal thoughts, along with a handwriting tank, yet is happy most all of the time. BTW in the peak of Lyme symptoms my DD had bad stomach pains which are now gone.

 

I have found that some things don't seem to work and then you stumble on something that does. Though I liked my first Lyme doc I just moved to another to get us to the next level. We also see an integrative MD and an immunologist. (we have a new one as we have moved, who really doesn't like long term abx but is very pro ivig) my DD4 has a newer case of Lyme and also the complement deficiency, I am actually taking her to CHOP immunology which I do not think is an open minded institution, even though we have seen LLMD's for her and also the integrative MD, for a second opinion as her primary issue seems to be the immune problem everything else follows on.

 

I assume for the cardiac issues you are seeing a cardiologist? In Cure Unknown Pamela Weintraub wrote that her husband essentially has to go on and off Doxy for Lyme for life. Others seem to be able to reach a cure. For some people it's just one thing and for others its a whole bunch of things. I think after six months which is a good shot its time to try something else.

[tu4four]

Thank you all for your great insight/info about what you have done. I have been out of town and am just now able to sit down and think through what you have said a d what my next steps might be before we see our LLMD in a month.

 

I think it makes a lot of sense to test her for kpu and will do that ASAP. Also think it makes a lot of sense to try Knotwood and curcumin rather than relying on Advil at the worst of it. And I think it is definitely worth thinking abouT--not committing to, but thinking hard about the possibility of immune suppressing drugs.

 

I have read other posts about hashimoto's encephalitis, and this is absolutely worth testing--all the women in my family have thyroid issues, I had grave s disease, , my father's family was full of auto-immune issues, and my father actually died from an auto-immune disease---wegner's granulomatosis.

 

So...I am going to check all of these things out as fast as I can, and if I know nothing different in a month, I'll ask llmd for more of a cyst-busting drug like tindamax.

 

One more thing I'd ask---please pray for our situation because my kids are sick, money is running out, and we have been trying to find some sort of answer--through psych drugs at first, then pandas, then Lyme for a total of about eight years--with very little headway. Only through God's provision can we heal our kids and make it out of this.

 

Thanks for all of your wisdom.