Starting to question diagnosis....

[qannie47]

Okay, what specific Lyme tests should I ask for, and do you recommend using our peds doc, (he supports Pandas), or go to Lyme specialist? Any in Chicago?

[rowingmom]

RowingMom - I am right there with you. It took me 6 months of denial before I'd consider lyme. Lymies were nuts, my son's WB was negative, he had classic pandas, LLMDs were quacks.....

 

LLM - You were the one that brought me to the lyme (well actually bartonella) conclusion. I was a blubbering mess, I cried for three days straight. Everyone told me I was nuts (PCP, Pediatrician, Ped Psych, family).

 

Then I found a LLMD.

 

But you know, if it hadn't been your constant harping on MTHFR, I never would have realized how important this is to the whole picture. I think these deletions are part of the reason why our children react to, and can't recover from, these infections the way other people do - That and the whole 38 vaccinations before 10 years of age that make a horrible assault in the kids immune systems. Some LLMDs don't address methylation or address it properly. They just throw a bunch of methylated Bs at it thinking the more the merrier.

 

And the constant harping by other mom's here on the importance of anti-inflammatories. This was a critical part of DDs healing, completely ignored by our LLMD.

 

I know people who have had bullseye rashes and are fine. People who have gotten acute bartonella and recovered with a couple weeks of abx.

 

These infections are effecting our kids differently for some reason.

[rowingmom]

Okay, what specific Lyme tests should I ask for, and do you recommend using our peds doc, (he supports Pandas), or go to Lyme specialist? Any in Chicago?

 

Find an ILADS trained LLMD. Someone here may give you a suggestion, or head over to the ILADS website for a referral. They will clinically diagnose and then suggest the tests they think would be helpful. There are different endemic infections depending on the area in which you live.

 

Our LLMD knew right away that DDs PANS was caused by her bartonella infection. I couldn't believe she knew anything about PANS/PANDAS. These doctors understand. But not everything as I stated above. Be your own inflammation and methylation researcher.

[LNN]

Well, to continue the lovefest, Rowingmom, I again agree with you. Even the best LLMDs don't/can't look at everything. They see our child for 45 min every 2 months. They know a lot. But it's up to use to stay current, look at the entire picture for our kid's unique challenges and responses. As a parent just recovering your balance from this thing called Pandas, when people like us start tossing spaghetti at the wall - lyme, coinfections, yeast, metals, mold, detox, methylation, inflammation, diet, convergence insufficiency, yada yada...I can understand why it's so hard to consider it all, sift thru ideas and know where to start. I wish the Vulcan Mind Meld were a real thing. Because it takes so long to find your way through all of this. Even now, I'll sometimes search the archives for something and end up finding discussions on the above topics that took place a year or two before I joined the forum. And I think "why didn't someone tell me about all this back then?"

 

And the answer is, they probably did. But at the time, I wasn't in a place where I was ready to hear it. I could only handle so much, learn so much, while trying to cope with the loss I was seeing in front of me. The process you describe is a journey that takes a long time and it's why it's so important for us to be there for each other, "passing the torch" if you will. And as an example of paying it forward, you can know that after your own personal harping, I'm going to break down and get Buehner's book. It's time for me to go off an learn about yet another thing I didn't want to learn about

 

Qannie - you have different options on lyme testing. The cheapest thing to do is do a standard WB lyme test thru a commercial lab. Some people actually do test positive on this test and it's covered by insurance. if this were true for you, you could stop right there, take your results to an LLMD and start treatment.

 

If the standard WB were negative (again, PLEASE read the lyme pinned threads on testing) you could proceed to an Igenex lyme test ($200 out of pocket but then you can submit an insurance claim and might get reimbursed a portion of the expense). Or if your son's not on abx, you can do an Advanced labs test for $500 to look for actual lyme spirochettes, and if positive, no one can argue with the picture of the actual lyme bacteria grown from your son's blood.

 

But beyond this, I wouldn't test for co-infections until after seeing an LLMD (and yes, I do think this would be a good next step given what you've shared). The reason is only that each LLMD has his/her own feelings on the reliability of co-infection tests and it's best to let them get a clinical picture before spending $660 on more tests. Save that money for an initial consult and get their thoughts first. You may end up doing the tests, but I think the consult is a better first step.

 

Under the pinned lyme threads, you'll see a post about how to find an LLMD. I don't know of any in your area off the top of my head but the posts are a good starting place http://www.latitudes.org/forums/index.php?showtopic=10804

 

Finally, please don't feel pushed into lyme. It does seem worth investigating. For some of us, it's been an important component of getting well. But be methodical and take things one step at a time. There are many paths to explore and they're all expensive. Always stop and do a gut check. Follow your heart. If you're going to screw up along the way, let it be your own screw ups and not based on well meaning opinions from the rest of us hens who have lots of personal stories but not medical degrees. Trust yourself

[rowingmom]

I really don't think the presence or absence of lyme is important, and the results from the ELISA and WB are often negative because of immune supression. I think the coinfections are the cause of the larger problems. I would find a specialist to clinically diagnose and make suggestions on coinfection testing.

[SSS]

Just want to add:

Whatever test you decide on, ALWAYS make sure you get a full copy to double check yourself.

 

Lyme sounded insane to me. My sheltered, never been camping, never had a pet, non-endemic area living 5 year old?

What?

On a 'whim' I found a labcorp WB test online, no Dr. signature required. Took her to the local lab for blood draw.

Only 1 band came up positive on the Labcorp test: positive band 23.

I wanted very, very badly to ignore that.

Try explaining to my husband, after we've dropped over $50k at this point chasing treatments,

guess what, she has Lyme disease, need a $1,000 appt. with a LLMD and more tests.

Right honey, the labcorp test says negative, but you see, band 23, blah, blah, blah.

And you can see by my personal signature here how that first appt. went, and what I found out.

 

By the way, there has been more than one time on this journey I have 2nd guessed, I have wanted to believe

(in our case)

'It's just autism'.

Because it is really hard. This is the hardest thing I've ever done, and I've done hard things.

But then I do nothing, I do take breaks with dd, and it's harder. And I have a good cry, think about what if I look back with regret about not doing enough,

what if I can save/ help this child more,

and try again.

One foot in front of the other.