Another PANDAS/LYME!

[JuliaFaith]

Cannot believe it but my ds12 was just diagnosed with lyme. After being sick for 8 mos. and not reacting to abx or steriods it seemed time to explore the lyme testing (before doing IVIG). Thank you to all the parents encouraging the testing-you are truly angels. One of our dr. had already tested with the Western Blot and was convinced that was not it. So, when looking at the IGENEX testing at $1100 I decided to call a LLMD and see if they would recommend the test. The ND (lyme speciality) recommended we spend the $ on treatment and a few inexpensive tests since lyme may or may not be hiding in the blood. The first visit was expensive but ds was started on some things to get started while testing was done.

 

A month later after hair, urine, & blood testing he was diagnosed with lyme, mycoplasma, & chlamydia pneumonia. The hair/urine tests were $155 total with insurance paying for the hair test so far. The protocol for this dr. office (Klinghardt) is (it is on internet) to treat toxicity first, then parasites, then lyme (something like that). Because our other dr. had already done a good job with detoxing we where able to skip the first part (hair test showed low toxicity). We are now just starting working on lungs/rash/yeast/viral/parasites. My son also has had rashes and a yeast infection going on.

 

When I asked why so many kids with PANDAS have lyme, dr. said that most of us have lyme and when other health problems come about, "it rears its' ugly head." Have to go for now. Will come back on and post more on protocol when I get a chance. Take care.

Edited December 5, 2010 by JuliaFaith

[KeithandElizabeth]

Hi julia;

 

Thanks for sharing your protocol. I am happy that you have found the answers to what is causing your son's issues!

 

And now let his healing begin!

 

Elizabeth

[smartyjones]

[quote name='JuliaFaith' timestamp='1291569077' post='94569'

 

When I asked why so many kids with PANDAS have lyme, dr. said that most of us have lyme and when other health problems come about, "it rears its' ugly head." Have to go for now. Will come back on and post more on protocol when I get a chance. Take care.

julia -- thanks for the update -- i'm very interested in what you can share from klinghardt visits -- are you actually seeing him or partners in his office? please let us know how your son is doing.

 

i very much wonder this point of infections. how much of the population is proven to have EBVand other herpes viruses. it's generally accepted that most people carry many viruses/bacterias and for most, it's not problematic. . . but for those that it is, it's a big problem. i do think this is often the case. or the theory that a body can handle a certain level but too much tips it over.

 

our dr told me he believes 'half of the people before you have lyme, whether they know it or not." we do live in an endemic state -- but still.

 

i think i just read something that 90% of the cases autoposied with the type of tumor Sen Kennedy died of have abnormal levels of toxoplasma gondii in their system. perhaps many of us do. . . perhaps that's just coincidence . . .

 

has anyone read the Stealth Infections book? i think that's the name.

Edited December 5, 2010 by smartyjones

[JuliaFaith]

My ds has had stomache aches/headache/muscle aches for 8 mos. He also has a yeast infection. He was diagnosed with mico and chlym pneu & lyme.

 

Here is protocol from dr. in Klinghardt's office.

 

LAB Tests: KPU/Hair analysis/blood draw TSH, free T3, free T4, Vit. D 1, 25 and 25-OH, CD-57 (labcorp only)

 

GI Inflammation: Ketotifen, Flora Stor, Bet Glucan, melatonin, lactoferrin

 

Lung healing: TriQuench (in nebulizer), Ivy Calm, Pulmonest

 

Skin rash: UNDA 270 cream, coconut oil

 

Detox Support: CVE, Detox Deodorant (also doing clay, 3 undas from other dr)

 

Nutrient support: Thorne Vit. K2, Selenium synergy, CORE, rock rose/cistus tea (for lyme treatment)

 

Anti-microbial treatments: fluconazole, valtrex

 

Parasite protocol (must be done exactly in order and on time to work-only 1 chance)

FIRST 2 days only: Biltricide

NEXT 2 weeks after Biltricide: Ivermectin, Pyrantel pamoate

NEXT 2 weeks after Ivermectin/Pyrantl: Albenza

NEXT 2 weeks after Albenza: Alinia

 

Have not started the parasite protocol yet. Will start in another day. This is where the herxing could start.

 

Here we go...

Edited December 6, 2010 by JuliaFaith

[MichaelTampa]

JuliaFaith,

 

I'm wondering if you can help me with some more information regarding the parasites. I started lyme treatment with abx, before anything for parasites, and I really think it helped my parasite problem get much worse. I am now working on parasites with Gamma Rizole and Zeta Rizole, something I saw from a Klinghardt presentation, that he recommended that for a couple/few months followed by 2 days of biltricide to finish it off. I feel like I'm getting closer to being ready to try the biltricide, but still not quite ready yet.

 

Your comment is scary if it needs to be done that precisely with all those follow-up drugs for the parasites. I just got 1 day's worth of biltricide for the parasites right now, it might be difficult to convince my current docs to give me the whole protocol of all those drugs. Is that protocol something that is published somewhere (internet, paper, anything) that I could reference and show my doc? Is this just what your doc or Klinghardt said in a conversation? Any idea why you only get one chance and what happens if you mess it up?

[Fixit]

JuliaFaith,

Any idea why you only get one chance and what happens if you mess it up?

 

yes..i would like to know too....????

as i am on my own trying to challenge the dot blot test....and started my ds on

andographis..and internal parasit forumula containing..cloves, black walnut hull, wormwood, milk thistle seed,

wasabi extract and enzymes....

 

i don't believe my ds has lymes but unlike alot of docs..never say never...

[JuliaFaith]

JuliaFaith,

 

I'm wondering if you can help me with some more information regarding the parasites. I started lyme treatment with abx, before anything for parasites, and I really think it helped my parasite problem get much worse. I am now working on parasites with Gamma Rizole and Zeta Rizole, something I saw from a Klinghardt presentation, that he recommended that for a couple/few months followed by 2 days of biltricide to finish it off. I feel like I'm getting closer to being ready to try the biltricide, but still not quite ready yet.

 

Your comment is scary if it needs to be done that precisely with all those follow-up drugs for the parasites. I just got 1 day's worth of biltricide for the parasites right now, it might be difficult to convince my current docs to give me the whole protocol of all those drugs. Is that protocol something that is published somewhere (internet, paper, anything) that I could reference and show my doc? Is this just what your doc or Klinghardt said in a conversation? Any idea why you only get one chance and what happens if you mess it up?

You ask some really good questions. A dr. in Klinghardt's office told me that if we did not do that sequence exactly right, the parasites apparently are smart little guys and change what they are doing. Something important here is that this is specifically put together for my son's symptoms thru ART testing so is very specific to him. If you can, I would find someone who has been trained by Dr. Klinghardt (I found many when I googled it), to confer with and get exact instructions specifically for you.

 

Also, I would look at the date of the protocol you are following, because Dr. Klinghardt is always doing more testing and may have developed something that works better now. However, on the other hand, it sounds like you have been following your protocol for a while and may need to see it thru to the end.

 

I have not seen anything exactly like this current protocol on-line but maybe with this additional information, you can 'google it' and find something up-to-date.

 

Hope this helps somehow. Best wishes on your health.

Edited December 6, 2010 by JuliaFaith

[JuliaFaith]

JuliaFaith,

Any idea why you only get one chance and what happens if you mess it up?

 

yes..i would like to know too....????

as i am on my own trying to challenge the dot blot test....and started my ds on

andographis..and internal parasit forumula containing..cloves, black walnut hull, wormwood, milk thistle seed,

wasabi extract and enzymes....

 

i don't believe my ds has lymes but unlike alot of docs..never say never...

You know, my ds was diagnosed (by another dr.) with a parasite several months ago and went thru 3 days of meds. (expensive). Then was re-tested and he was then negative. I told the dr. this but she did not seem to have much confidence in the testing procedures or the length of time for treatment. Except for the first 2 days, all the treatment is for 14 days, so very aggressive!

 

Have never heard of the treatment you are using. Good luck with your treatment.

[JAG10]

When I asked why so many kids with PANDAS have lyme, dr. said that most of us have lyme and when other health problems come about, "it rears its' ugly head."

 

Really??? Most of us have Lyme? All from tick bites or did he say we are getting it some other way? Is he saying Lyme is passed human to human like a cold?

 

Is this what most of the LLMDs are putting out there, that most of us have Lyme?

 

Am I the only one who feels suspicious the umbrella of who has lyme and the symptoms of lyme just keeps getting wider and wider?

 

If most of us have Lyme, one you "get rid of it" what's to keep you from getting it again if it is so common?

 

I think Lyme is a real disease, but not EVERY disease.

[lyme_mom]

I do not think most llmds would say it exactly like that because it implies that some of us are simply better than others at dealing with the Lyme bacteria and I think that they would say there are many strains of Lyme out there some much worse than others. Most llmds believe lyme is epidemic and that it is way under diagnosed. They suspect Lyme when someone has symptoms that are common with Lyme and the symptoms include almost any medical problem, JUST like syphilis, also a spirochete. have heard people (not llmds) make statements to the effect that we all have Lyme or other bugs but only some of us get sick. That may be true but I really doubt this is the case. I have been healthy my whole life and Lyme really brought me to my knees sort of speak. I am well now thank God but I will never forget what it did to me. I may have gotten sicker because had babesia and didnt know it or the removal of my fillings might have made things worse but i also think it is one strong bug and when u get a coinfection AND Lyme it magnifies the seriousness. I think there is so much about Lyme that we do not know. I personally believe that there are some really virulent strains of Lyme that are much worse than other strains of Lyme and that this accounts for the vastly different experiences some have with Lyme. I think it is A mistake to assume that those who get really sick are just more vulnerable and less healthy and I realize that this is not what the doctor said. I am going off the topic here :-). Lyme can take out the most healthy people and ruin their health. Obviously people who are unhealthy will have a bigger problem with Lyme but this alone cannot explain the differences in severity of illness. The spirochetes are morphing and there are some 300 strains of Lyme. I have also read that the Lyme bacteria gets in your DNA and perhaps that is what this doctor was alluding to too. that is way beyond what I understand though. The most important thing is that the child get well no matter what you call it. If a child gets well with a Lyme or coinfection treatment that is more important than the diagnosis. Clearly many people who have very serious and debilitating health problems get well with a Lyme treatment. Until it happens to you it is hard to believe it is so widespread. Plum island really helped accellerate the spread of Lyme but that is another subject.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[Familyof5]

When I asked why so many kids with PANDAS have lyme, dr. said that most of us have lyme and when other health problems come about, "it rears its' ugly head."

 

Really??? Most of us have Lyme? All from tick bites or did he say we are getting it some other way? Is he saying Lyme is passed human to human like a cold?

 

Is this what most of the LLMDs are putting out there, that most of us have Lyme?

 

Am I the only one who feels suspicious the umbrella of who has lyme and the symptoms of lyme just keeps getting wider and wider?

 

If most of us have Lyme, one you "get rid of it" what's to keep you from getting it again if it is so common?

 

I think Lyme is a real disease, but not EVERY disease.

 

 

Just want to throw it out there that the symptoms of lyme disease are the same as the symptoms of "biotoxin illness": illness caused by biological airborne toxins. I don't know much about lyme disease except that I was tested for it and the doctor told me that there is no definative diagnosis, that it is a "clinical" diagnosis. At my appointment he said that he believed I had lyme disease and he was just about ready to write me a prescription for long term antibiotics when I mentioned to him that I hold mold growing up the wall in my office. When I said that, he said, you don't have lyme disease, you have "mold illness" and he referred me to a different doctor.