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Dedee

Saw a new doctor yesterday.......

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We made the long awaited trip to the LLMD yesterday. It was a 5 hour trip, saw the doctor for about 3 hours and then 5 hours home.....exhausting! We had appointments for two of the children but we ended up "working in" the third one while we were there. Our history is that we have 3 children with PANS. All 3 in different stages. The oldest is the most stable, he has had it for 10 years and does pretty well but still a few residual eating issues and some mood swings. My 13 & 8 yr old kids are still in recovery mode with the youngest being the most challenging. Both of the younger ones have had Myco p and my daughter (8)can't seem to get rid of it. I had tested the younger ones for Lyme and both came back border line with a few lyme specific bands showing Ind. My daughter's test being more suspecious than my son's but both concerning. So since we really weren't getting complete resolution of symptoms after over a year of treatment, I made an appointment several months ago for the LLMD.

 

Long story a little shorter, the LLMD said she believed, considering the history, and the test results, that we are most likely dealing with Lyme. She was more sure in my daughter's case but highly suspicious for both boys as well. We will be starting combination antibiotic treatment and hoping to see some results. My oldest son who is 16 didn't have an appointment and did not have any labs done at all. I just asked her to look at his "stretch marks" to get an opinion as to whether they were true "stretch marks" or possibly bartonella markings. Without him even being a patient, she took his shirt off and did a thorough exam and said we should make an appointment for him also. When she had finished with the other two, I asked if she could go ahead and see my older one the same day since we had traveled 5 hours and we had finished a little early with the others and she agreed. So now we will be treating all three and hoping for some final resolution of these PANS symptoms.

 

She talked quite a bit about a link between PANS children and Lyme. Said they really aren't sure what the link is yet but it's becoming more and more clear that there is a link. She said she thinks that either the PANDAS makes them more prone to contracting tick borne illness or that having a chronic tick borne illness may increase the likely hood of a neurologic reaction to strep.....not sure, just something that some doctor's are speculating.

 

Anyway, not sure how I feel about it all. I am hopeful we can get to the bottom of things. We talked some about the MTHFR mutation that all my kids have and the KPU but honestly she knew just about as much about it as I already did. She thought she had a KPU protocol somewhere from a conference she had attended and promised to look it up. I was a little disappointed that I didn't get a little more guidance in that direction. Seems there are so few doctor's who really know what to tell you about all that. But overall I really liked her and thought it was worth the trip. It was definately worth taking my husband so he could hear it all from an expert. We have a follow up phone consult in November. Will keep you all posted. Keeping my fingers crossed.......

 

Dedee

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I'm glad you're getting help, and I would also suggest you look over the Lyme forum. It was started by PANDAS parents who figured out that their kids also had lyme or suspected lyme, so they will understand the issues between lyme, pans, MTHFR and KPU. You might want to PM LLM about the KPU and MTHFR info, because she has a very good understanding of it all. Good luck

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I'm glad you got some answers today from someone who sounds like a competent, caring doctor.

 

May I ask a question? Assuming that your dd has been treated with abx for her persistent myco, how does having lyme play into that? What is it about lyme that keeps a child from clearing another infection, even while on abx? Thanks!

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Congrats, DeeDee, on your perseverance and a long, delayed reward . . . a good, caring doc! Let us know how the new treatment protocol works out with your kiddos!

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1tiredmama, I'm not sure I can answer that question with certainty. My understanding is that both Myco p and Lyme are stealth pathogens and can evade antibiotics for long periods of time. They are able to move about in the body so if you are giving an antibiotic with good coverage for say upper respiratory then it will simply move to an area of the body that the current antibiotic will not cover. Thus the importance of more than one antibiotic. So far my kids have only been on one antibiotic at a time. Although we have tried more than one type of antibiotic, we have never tried a combo of antibiotics at the same time. Evidently this can be key to getting rid of Lyme and other tic borne illnesses. In addition, Lyme (in a self preservation effort) will form cysts in order to "hide" or protect itself from the antibiotic, so additional "cyst busting agents" may be necessary at some point to push through this stage. My daughter has continued to be positive for Myco p for over 18 months despite antibiotic treatment so there was some suspicion that there may be another infection going on that was preventing her from clearing.

 

This is all new to me and I admit that I am a bit skeptical, but in a weird way it makes sense and I am willing to try the combo treatment in hopes of at least clearing the myco p (which I am sure about). I am praying for a good result.....Thanks for everyone's well wishes. You guys are my rock!

 

Dedee

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May I ask a question? Assuming that your dd has been treated with abx for her persistent myco, how does having lyme play into that? What is it about lyme that keeps a child from clearing another infection, even while on abx? Thanks!

 

I don't know that there's only one answer to this question, but here are a few possibilities:

- abx do not necessarily clear any infection single-handedly. My understanding is that abx work is that it either prevents the bacteria from forming a strong cell wall (an extracellular abx like penicillin), allowing the immune system to destroy the bacteria or it gets inside the same cell that the bacteria has invaded and prevents that bacteria from making proteins it needs to survive and replicate (intracellular like azithro).

 

But the abx is only a partner to the immune system. The abx slow the enemy down. The immune system still needs to work in conjunction with the abx to get the job done. Anything that inhibits the immune system can hinder the effectiveness of the abx. Like fighting with one arm tied behind your back. Things that hinder the immune system include - multiple or consecutive infections, low vitamin D, low zinc, high levels of oxidative stress and or/inflammation, nutritional deficiencies, toxins...

 

Complicating things, when you've been sick for a long time, the bacteria start to form biofilms. This is a big topic in lyme, but many bacteria form films, not just lyme. The plaque on your teeth is a biofilm of mouth bacteria. A biofilm can become a slimy home for not just the bacteria that builds it - other viruses and bacteria can move into the film community as well. The film serves as a cloaking device - the immune system can't see what's inside and most abx can't break through. Even abx that are cyst-busters, such as flagyl and tindamax - are only partially effective at attacking films. So even with abx, you can have a persistent infection. The bacteria hide in the film, grow, and only break out of the film periodically to replicate and form new film colonies. How often this happens depends on the life cycle of the bacteria. Bartonella has a life cycle of a few days, lyme has a life cycle of 3-4 weeks. So you'll see flares when the bacteria is replicating and is more abundant (and partially visible to the immune system while it's emerged from the film and busy replicating).

 

Here's a good explanation of things:

https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=175 It's a little technical, but I really encourage you to read it in it's entirety. I can't really do it justice with cut and paste but here are some excerpts:

 

Intracellular bacteria have developed the ability to morph into a tiny form with reduced cell walls in order to evade the immune system and survive the antibiotics that kill bacteria by inhibiting cell wall formation. These variant forms of the original parent bacteria have learned how to live within the cells, including the cells of the immune system (phagocytes) that are supposed to kill them.

 

It is theorized that the intracellular bacteria don't block the VDR (Vitamin D Receptor) themselves; they control the actions of the immune system with the proteins and toxins they release. These substances act directly on the proteins and/or kinases within the phagocytic cells to directly release Th1/Th17 cytokines (small secreted proteins which mediate and regulate immunity). It's the proteins secreted by the bacteria themselves that uniquely and solely produce what is called the "Th1/Th17 immune response." The resulting inflammation causes Th1/Th17 inflammatory symptoms.

 

Dysregulated vitamin D metabolism

 

Vitamin D metabolism dysregulation is thought to be a mechanism that intracellular bacteria use to hide from the immune system and defeat the action of antibiotics alone, allowing them to multiply safely sequestered within the cells. Vitamin D Receptors are blocked by bacterial proteins causing the inflamed tissues to produce an excess of the secosteroid 1,25-dihydroxyvitamin-D in an attempt to activate Vitamin D Receptor (VDR) transcription. The blocked VDR allows the bacteria to colonize the phagocytes, avoiding the lysosomal phagocytosis.

 

Olmesartan docks into the VDRInflammation Therapy (IT) uses Benicar to control 1,25-dihydroxyvitamin-D and angiotensin II. Benicar seems to competitively up-regulate the VDR to produce anti-microbial peptides that can then weaken and kill the CWD forms. At high doses, Benicar also blocks key cytokine cascades, thus providing an anti-inflammatory effect and helping the patient feel better. See Benicar.

 

The correct antibiotic regime also weakens these antibiotic-resistant bacteria so the immune system can more effectively kill them.

 

Co-infections

 

When the body is weakened by chronic, inflammatory disease, opportunistic co-infections are common, because the immune system is overwhelmed dealing with the intracellular bacteria. Sometimes bacteria are detectable in the bloodstream by routine methods (co-infections), but these are not the bacteria that usually make people chronically ill.

 

Co-infections that have been resistant to treatment will likely be eliminated by the immune system as its proper function is restored with Inflammation Therapy.

 

 

So back to your question - it isn't just lyme that seems to cause chronic problems but it's one of the culprits we can test for and when kids don't seem to be able to achieve remission between Pandas flares, it's something lyme parents suggest. Lyme bacteria can take 3 different forms - a rod shaped spirochette (which can be seen by the immune system and the body will make antibodies to), a cyst form (which forms when lyme is subjected to abx, making itself more impervious to abx and invisible to the immune system) and an l-form (having no cell wall and living within a body's cells, sometimes even with the macrophage immune system cell that's supposed to be hunting it down and killing it). Ticks are thought to carry/transmit multiple infections in their stomachs/saliva - lyme, bartonella, babesia, ehrlichiosis, mycoplasma and who knows what else. So you can get multiple infections from one bite and often don't get any sort of bulls eye rash around the bite. But regardless of the co-infection, once the immune system has multiple enemies, it gets very difficult to restore health. Abx alone won't do the trick and certainly using only one abx at a time won't get you well when you have a chronic illness and/or more than one infection.

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