confused. lyme? strep? band 39 IND?

[stacestar]

Hi, I'm new here, but am familiar with the site, b/c of reading much info. last fall.

 

I'll try to keep my question shorter, so it's not too time consuming.

 

In a nutshell, here's my situation:

 

my son (4), has/had PANS and lyme symptoms starting last fall (Oct. mostly)

 

long story short, is it looks a whole lot like lyme. so we did Igenex Western Blot, end of Dec.

his test was like this:

IgM all negative, except band 41 IND

IgG all negative, except band 39 IND and 41 ++

 

so llmd said, let's treat for lyme

even our pediatrician and ID dr. he referred to (my husband wanted a 2nd opinion)

said "definitely treat for lyme"

 

so he started amoxicillin beginning of Feb. (been on them 5 weeks now)

and he's showed some improvements.

 

fast forward to today, we had an appt. with a new llmd (I wanted a new one, b/c the other was only prescribing amoxi, and not checking liver, candida, etc.)

 

anyway, she said today, something which has confused the heck out of me, and is causing me anxiety.

 

she said, she's not sure he has lyme. She thinks his Igenex test would have shown more positive bands, b/c he's a child with a "robust" immune system. Even though 39 was IND, which I read was to be read as a weak positive on a lyme specific band.

 

She wants to test for a strep infection. Basically b/c his tongue has the strawberry dots on it and his lyme test wasn't very reactive.

 

Here's my frustration, I want a dr. who can recognize lyme and not go by tests alone.

I've read the reasons for why it could be a negative lyme test when really it's there.

 

his symptoms are these, in the order I noticed them as of last fall:

 

sole of foot pain

stomach ache,

fatigue

"don't feel good"

blinking motor tic (which has stopped as of mid-Dec.)

migrating joint pain

muscle pain

overall not feeling well

sore neck

headaches

weak legs

tired legs

tingling in hand and legs and feet

dark circles under eyes

red outer ears

bumpy rash on arms and cheeks

urinary incontinence, which has gotten better, none lately

 

that's it mostly

oh, more easily irritated sometimes, but better than it was in the fall

 

Any thoughts?

my questions are:

 

-has anyone heard that band 39 isn't lyme specific?

-do these symptoms sound like strep"

or more like lyme?

 

help?!

 

I'm just so confused. This is our second dr. (first was farther away and again I wasn't so happy with her treatment protocol) my husband thinks this is all hogwash to begin with, and if I change dr. again, he will think I some weird disorder, that I'm trying to make a dr. say my kid has lyme.

 

I'm kind of down about this right now.

 

Thanks for any thoughts, and so much for keeping it short!

 

[msimon3]

The Western Blot measures antibodies that stick to certain proteins denoted by the bands. These bands were standardized by breaking up and sorting the proteins of the Borrelia burgdorferi bacteria. For most commerical labs (e.g. Labcorp, Quest) the bacteria used was strain B31, while other labs like Igenex also use strain 297 to make a more comprehensive test.

 

Band (kDa) 41 is flagellin, and will be positive for any bacteria that have flagella.

Band 39 is flagellin for Borrelia, but many species and not just B. burgdorferi.

 

Most LLMD's will recognize that the WB test is a tool to help with the diagnosis, but is not THE tool to determine diagnosis. The WB will be negative if your immune system is not making antibodies to strains B31 and 297 of B. burgdorferi, which might mean you do not have Lyme or it might also mean that you do and you are not making antibodies. Or it might also mean that you are infected with a different strain or species of Borrelia which we technical do not call Lyme disease even though it makes you ill (e.g. B. miyamotoi).

The clinical symptoms you list certainly fit with Lyme disease. I would expect that your LLMD would focus on those symptoms rather than the WB test results, and try various treatment protocols to see if the symptoms get better or worse. The protocol needs to address variation of the physical forms of the Borrelia, specifically its spirochete, cell wall deficient, and cyst forms. Treatment for only one form may yield only temporary benefits and cause risk for continued infection and symptoms.

And, of course, you could have strep *and* Lyme. But treating for both can be done with a single protocol.

[rowingmom]

Hi, and welcome!

 

To me your son's symptoms sound like a combination of lyme and bartonella. If you are now seeing an LLMD that hasn't suggested the possibility of coinfections, you need to find yet another one.

 

Our LLMD made a clinical diagnosis of bartonella and possibly lyme based on symptoms very similar to your son's (see my signature below), and began treatment immediately. DD (Dear Daughter) tested highly positive for bartonella (which is a separate test), with only 2 IgG lyme-specific bands returning on the lyme WB - kDa 39 and kDa 34 being IND. 41 was ++.

 

kDa 39 is lyme specific, which although present, may not be causing the majority of the symptoms you son is experiencing.

 

We treated specifically for bartonella, and then later added treatments for babesia (which had tested negative). This brought DD the most healing. My thought is that lyme is a fairly insignificant player in all of this, and that other infections and perhaps genetic deletions (MTHFR) which reduce the body's ability to detoxify bacterial endotoxins, mold, pesticides, metals etc, can have much more of an impact.

 

Both lyme and bartonella are highly immune suppressive. When the immune system is suppressed there is reduced or improper antibody development to infections. In this way these infections are allowed free reign and can be hard to detect through testing, especially through antibody testing. With an improperly functioning immune system, other infections like strep can also become problematic.

 

We have found more lyme-specific bands appearing since completing abx treatment, despite the fact that DD's health has improved significantly. Our LLMD takes this as an indication of a more properly functioning immune system.

 

Try and contact ILADS, they can give you names of properly trained LLMDs in your area.

 

To me the fact that an LLMD doesn't test or recognize the possibility of coinfections, especially the more common ones (bartonella, babesia, ehrlichia) given a symptom list very suggestive of both lyme and bartonella - is a huge red flag. Sorry.

Edited March 25, 2014 by rowingmom

[sf_mom]

We did extensive testing to prove Lyme. Like your DH we wanted absolute proof and we eventually got it for some of the individuals in our family.

 

I believe I was positive or IND for Band 18, 31, 34, and 41. We also ran the Epitope Band 31 test by Igenex, it confirms the antigen of BB not antibodies and it was positive. For our older son who was originally only positive for Band 41 via Igenex we ran the Dot Bot with provocation which is a urine test and also looks for the antigen. To provocate we started him on Alinia (cyst buster, antiparasitic, antibiotic) and collected urine on days 3, 5, 7. They found the antigen (its like finding DNA) from the die-off in his urine and it was positive. Our younger son who is a twin was PCR positive (DNA) for Bartonella, Babesia and IND for Lyme with specific bands. His twin sister came up serologically negative for everything. She has/had symptoms of Lyme and is responsive to treatment. She is immune deficient and does not have strong antibody response and why antibody testing is not that great for her. We used her twins results to help determine infections. In our case its gestational Lyme for all the kids.

 

Others on the board have done the Lyme Culture test via Advance Labs but you would need to be off antibiotics for 4 weeks. Others on the board, move on to look for co-infections like strep, mycoplasma, chlamydia pneumonia, bartonella, babesia, viruses, etc.

 

Ultimately, it is treatment response that is most critical minus the HERX that will help determine direction of treatment. Lyme is treated with combination antibiotics and if its helpful I would continue no matter the test results.

 

I agree with RowingMom.... That your current Dr. NOT suggesting 'other' confirmatory testing given your son's symptoms raises some red flags. Perhaps at your next appointment suggest some of the tests listed above and see what kind of response you get. Our older son did have strep titers that resolved with treatment.

Edited March 25, 2014 by sf_mom

[rowingmom]

I noticed "gasping for breath" listed as one of your son's symptoms in your first post. This symptom of air hunger is often associated with babesia.

 

Even though DD tested negative for babesia and had no herx reactions, and only improvement on malarone (an abx used for malarial/protozoan infections), she did develop this gasping/sighing symptom (as well as chest pressure) with high doses of cryptolepis (a broadly acting herbal antibiotic used for malarial/protozoan infections).

 

This has been our only indication of protozoan involvement. And this is the only treatment that has truely improved her executive/cognitive function.

[sf_mom]

I just reread your son's symptom list. I am curious what type of headaches he has and where are they located? Where is the location of sore neck.... base of skull, shoulders, side of neck?

 

The urinary incontinence, dark circles could be mold exposure and like some infections mold will suppress the immune response. Is it possible he was/is exposed to mold. You might want to run some preliminary teats for mold. HLA markers will tell if he has the genetic ability to detox mold and lyme properly. If he can not, I would immediately follow that test with Real Time Lab Test for mycotoxins.

 

Edit: I think RowingMom and I are thinking along the same lines. He has a lot of symptoms of Babesia.

Edited March 25, 2014 by sf_mom

[mama2alex]

I agree with what others have said, but I'm wondering - did neither of these LLMD's run any tests other than the western blot?? If that's the case, I wouldn't work with either of them. With "Lyme Disease" what's usually going on is multiple chronic infections and dysfunctional immune system (weak responses/autoimmunity/allergies all at once), often accompanied by one or more of the following: heavy metal toxicity, mold toxicity, methylation issues, vitamin/mineral deficiencies, etc. There are many tests they should run after the first appointment, not just the western blot!

 

You might do well to start a new thread and ask for recommendations for a good LLMD in your state.

 

Hang in there and don't doubt your instincts.

[stacestar]

thanks everyone for your thoughts and ideas.

 

The first llmd didn't test for anything else. Our newer llmd was surprised by this (so maybe that's a good sign) and is having the following blood tests done: for celiac, for rheumatoid arthritis, strep titers, vitamin D levels, CBC, and I think that's it.

 

To be fair to her, she did mention that since my son had foot pain we could test for Bartonella if I wanted, but she said it would be useful to do so to, "confirm lyme dx",

but my issue is I hear from people, from other Dr.s (first llmd, an ID Dr. our pediatrician consulted with, from an article with a quote from Dr. C in MO, etc.) that a 41 ++ and 39 IND, along with lyme symptoms should be enough to say "this looks like lyme, let's treat for lyme".

 

What she said was "I don't know that your son does have lyme, b/c I would think he would have more +'s in other bands, since he's a child with a robust immune system". She basically said, it could be lyme, but she's not convinced.

Yet, like I said, other llmd's with more experience than her seem to be convinced.

 

She's still treating him now for lyme, and even told me that strep and celiac, etc. don't rule out lyme, but it is good to know what all is going on. I can agree to that.

 

Question: Do you think she would be offended if I asked her to consult with a lyme literate dr. who has experience treating lyme in children, regarding understanding that children can have false negatives, and don't have to light up their western blot to have a lyme infection?

(someone on another site has an llmd with years of experience treating children and he dx her daughter with only symptoms and band 41+. I wonder if she could consult with such a dr.)

 

 

Thanks for the input!

 

oh and to answer where are the headaches? since it's not me, but him, I can't say it's always or only here, but he's told me before "forehead" when I ask where it hurts, and I've seen him hold his forehead when he is pain with a headache.

neck pain? not sure, but he holds the back of it when he says it hurts sometimes.

Edited March 26, 2014 by stacestar

[pr40]

rowingmom, your signature line says "April 2013 - Weaned from abx treatment. Continue with Buhner herbs, ByronWhite, methylation/detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure." Could you tell me which herbs in particular did you use? I went to Buhner's site and was confused by the number of different treatments it suggests. thanks in advance!

[sf_mom]

Headaches across the forehead are 'typically' Bartonella. Headaches at base of the skull are 'typically' Babesia. Of course, there are other infections that can cause similar headaches. But, these two types of headaches are related to these specific infections when TBIs are involved (Tic Borne Infections).

 

It is good to rule out all other possible triggers/issues but would also continue to explore more concrete Lyme and co-infection results based on your son's symptoms. Co-infections testing via Igenex is PCR testing (DNA testing). Again, there is antigen match for Lyme. These types of tests are not antibody testing and highly accurate when positive and would provide the kind of confidence maybe everyone needs for diagnoses.

 

LLMDs follow the guidelines for treatment outlined by the ILADS organization. There are a lot of Dr.'s who treat Lyme but are not LLMDs and why we had concerns. Combination antibiotics are recommended when treating Lyme. One type of antibiotic is used to treat outer cell wall and one type of antibiotic is used to treat inner cell wall.

 

For our family we found Lyme "et al". Often Lyme is not the only issue and like Mom to Alex stated: methylation, mold, detoxing abilities can be huge issues as well as Lyme. This was true for our family.

Edited March 26, 2014 by sf_mom

[mamaluvsyou]

I don't know that anyone can answer all of your questions specifically. I can tell you that my dd age 4 1/2 at the time she showed PANDAS symptoms, was tested for Lyme, and that I feel your frustration in the illusive and unsure diagnosis. We never saw a tick but she did have a couple of weird bites that summer (I thought mosquito or spider). Looking back we had neck pain, fatigue, etc, but we didn't recognize it all at the time. Her test results sound similar to your sons, some important bands like 39 were IND, and we did treat for lyme. But I never got that yes we are 100% positive she has lyme dx, even I still some times wondered if we were treating her unnecessarily. But then we re-tested after 9 months of treatment and her test was more positive, with lots more band + and IND. It's such a tricky things with kids, but I can tell you treating for while is better than waiting and seeing when it comes to lyme. In our neighborhood, we have had 3 other kids yet positive, so we know its here!

 

Keep following your gut, make the best decision you can with the info you have, and find a doctor you are comfortable with. Good luck..

[rowingmom]

rowingmom, your signature line says "April 2013 - Weaned from abx treatment. Continue with Buhner herbs, ByronWhite, methylation/detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure." Could you tell me which herbs in particular did you use? I went to Buhner's site and was confused by the number of different treatments it suggests. thanks in advance!

 

We are using the full bartonella protocol, minus l-arginine, because I just can't convince myself that a viral infection is not involved. We are using the full dose of Japanese knotweed, but 1/2 dose of everything else - sida acuta, houttuynia, cordyceps (this is from his book Lyme Coinfections: bartonella and mycoplasma.

 

Because we saw such an improvement in executive function with malarone during abx treatment I also started dosing CSA (a tincture containing cyrptolepis, sida and alchornea - cryptolepis is used for malarial/protozoan infections). With high doses of this we actually saw a babesia herx and since lowering the dosage have had even more improvement with executive function and concentration/behaviour.

 

BARTONELLA

Research is ongoing, this is the most up to date protocol:

• Sida acuta tincture (from Woodland Essence or julie@gaianstudies.org) ¼ tsp 3x day for 30 days

• Hawthorn tincture, same

• Japanese knotweed, (tincture, same dose (from same sources as Sida acuta, above), or capsules from Green Dragon Botanicals 2 capsules 3x daily)

• EGCG 400mg +- daily

• Houttuynia (Yu Xing Cao – 1st Chinese Herbs, powder – use “LYME” code at checkout for 10% off) 1 tbl daily

• L-arginine 5000 mg daily in divided doses

• Milk Thistle seed, standardized, 1200 mg daily

All for 30 days.

PLEASE NOTE: If you have active herpes, chicken pox, or shingles DO NOT USE L-arginine. see also: bartonella

 

Just today her teacher called to say that over the last 6 weeks, DD has been doing superbly in school. Confident, happy, asking good questions, getting all work done, an exemplary student. I was blown away, because that was when I slightly increased cryptolepis after being on lower dose for a couple of months.

 

We are using supplements suggested by our LLMD as well including:

 

vit c, vit d, liposomal glutathione, phosphatidyl choline, taurine, methylated B's, methyl B12, liposomal curcumin, ResearchedNutritionals TransferFactor, OrthoFlora YeastSupport, 50 billion probiotic cultures daily.

 

 

Edited March 27, 2014 by rowingmom

[ktdommer]

Any chance your son has congenital Lyme? If he did he wouldn't have a normal robust immune system like doc thinks he should have. My son with congenital Lyme didn't show symptoms until age 5 and slowly more and more.

Has anyone discussed an antibiotic challenge and then repeat testing? I know our ILADS doc would treat based on labs.

Best wishes,

Kari

[stacestar]

hi ktdommer,

 

thanks for your thoughts. I haven't been on this site for a few days or I would have replied to your question sooner.

 

As far as might he have congenital lyme? That's actually something I've wondered about myself, here's why:

 

-although I'm sure it's very rare to have a lyme infection and not have physical pain or fatigue symptoms, I have heard (in a radio interview online with Dr. Stephen H. from CA, and read elsewhere) that it is possible for reasons unknown.

 

-and, although it may not be related, I do remember having a tick embedded in my leg at around 10 years old or so.

and, I don't remember if these were close together time wise, but sometime near after that tick I developed sudden OCD.

 

now maybe these two aren't related, maybe my OCD wasn't a PANS reaction, or if it was, maybe it was to a different infection. I don't remember any anxiety or other typical PANS symptoms, but I do know that the OCD came out of no where and was sudden. it's faded out a bit now as an adult, or at least has changed, to now more anxiousness and checking; it's mild I know compared to what some experience.

 

only other things I notice on the symptom list are floaters in my eyes, dark circles under eyes, low blood pressure, and creaky (rice-crispie sounding) neck, which I'm sure can come from other things of course.

Other than those things, I feel no pains, no headaches, no fatigue,…basically nothing physical, but I guess stranger things have happened. Who knows?

 

He is on antibiotics now; has been for 6+ weeks, and the new Dr. mentioned retesting now that he's been on abx for awhile.

To be honest, I kind of resist that idea, b/c of the expense, and b/c I feel like if she could consult with a lyme literate dr. who treats children and discuss my son's test with him/her that maybe she could decide based on that test and his symptoms that he has lyme, since two other dr.s did. There are some reasons I don't want to go to the first llmd and to save time I'll leave it at that, but I do agree with her lyme dx the more I think about it.

 

The fact my son had 39 IND makes me believe his lyme symptoms are due to lyme;

to me everything I read says that 39 is lyme specific. Someone once told me that band 39 being lyme specific is "debated", but I cannot find anything that says that anywhere.

 

Maybe it is from me? I don't know.

I mentioned this briefly to the dr. and she acknowledged that could be the case, but said it was more likely that if has lyme that it was from a tick on him. She doesn't know. I don't know.

 

Thanks for that idea though, b/c it would explain the test result probably. That or a co-infection, which I'm debating getting him tested for; the expense!

[rowingmom]

If you have a doctor that thinks an observed bite is necessary to diagnose lyme, you need another doctor. Lyme can be passed through breast milk and can cross the placenta. Like syphilis, it can be sexually transmitted.

 

"-although I'm sure it's very rare to have a lyme infection and not have physical pain or fatigue symptoms, I have heard (in a radio interview online with Dr. Stephen H. from CA, and read elsewhere) that it is possible for reasons unknown."

 

If you have a capable immune system you can have lyme but no symptoms. As the bacteria are released into the blood stream from wherever they have sequested, the immune system will deal with them. The load is low and kept low. The body is in balance, immune system and good bacteria balancing the infection.