posted
I'm going to rant here, as I assume most of you folks here get it, and can offer me some sound advice. I took my children to their GP today, just to inform her of my diagnosis/positive Igenex labs and let her know that I am having my children tested and assessed by a LL Pediatrician in the U.S.
I didn't expect support from her, in terms of managing any problems my kids encounter as a result of treatment, and I never asked her for any during the visit. It was just an FYI, if you may.
Anyhow, she basically tells me my test results are bogus (she is not my GP by the way), and proceeds to rant her face off and insinuate I am endangering my children. I half expect her to report me to the Children's Aid after our visit today.
I am a health care professional myself, and I consider myself a savvy consumer. I don't believe I am someone who is easily duped, and one who would fall victim to a scam.
I have two young children. One under two, with an undiagnosed seizure disorder, and a 4 year old with Autism. I think it's only prudent to have my kids checked considering they have neurodevelopmental issues. I have not yet decided if I will treat them, I just think it is worth testing them as I was never diagnosed or treated prior to, or during my pregnancies.
I have been suffering for 19 years, and had a known tick bite. I was working in a veterinary clinic at the time. I had an annular bulls-eye rash with "target" lesions (likely a disseminated EM rash) shortly thereafter, and went on to have the classic mono-articular arthritis for 7-8 years. I now have a neurogenic bladder requiring self-catheterization and mostly neuro symptoms, although the arthritis comes back if I get run-down or sick.
My Igenex results are as follows: On the IgM Western blot I am CDC positive and IGeneX positive for Lyme. Bands: 18+, 23-25-, 28-, 30+, 31+, 34+, 39++, 41++, 45-, 58-, 66-, 83-93 IND.
My Ontario ELISA is negative, and my CD57 count done in Ontario is normal.
I have booked myself with a LLMD in NY in December. I am waiting for Igenex kits to come for my kids. Lucky for me my kids DAN! doctor has been helpful in terms of ordering our tests, but he too does not advocate long-term antibiotic treatment.
I am in a situation where I am hitting a bit of a wall with the local medical professionals. Is there any other way I can get them to take me more seriously?? Another lab, besides IGenex I can use? I don't care what the cost.
The local docs seem to be considering Igenex a "junk lab" with loads of "false positive" results. If my WB was positive and I had no history of tick bite or "possible" EM rash, then I wouldn't give credence to my labs, but c'mon people!!!
As if the pain and suffering I went through the last 19 years weren't enough. Now I need to get tested with another lab, that is perhaps more credible? I thought the CDC accepted CDC positive labs out of Igenex. I am not American so it doesn't matter, but I thought the fact that I was CDC positive would give me more credibility with doctors here.
I am seriously peeved and very emotionally upset. i have cried off and on about this all day. On a completely seperate note, I have been told they are no longer sending out ticks to public health for testing here (even if people were bitten by them) because they were getting too many and couldn't test them all. Seriously....WTH??
I am so angered by all this I might just have to go on a tick collecting expedition myself and see if they will take any I collect. This is total NONSENSE!!
Sorry for the rant. One last question. Anyone know if I get treated by the LLMD I go see, is there a chance I will form enough antibodies to have my Ontario ELISA turn positive? I would like to have something to slap in their face when this is all said and done!!
Phew...I feel better now
-------------------- B&BzMom Misdiagnosed for 19 years. Igenex and CDC positive July 2013: IgM 18+, 23-25-, 28-, 30+, 31+, 34+, 39++, 41++, 45-, 58-, 66-, 83-93 IND. Babesia & Erlichia (IgeneX) Clinical dx of Bartonella
Mom of two. One with Autism. Posts: 14 | From St. Lawrence River Region, Ontario, Canada | Registered: Jul 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Oh my goodness! I am so, so sorry that you had to deal with such ignorance and invalidation.
My gosh, Igenex is not some fly by night lab set up in someone's garage. I don't understand it. In the US Medicare even pays for Igenex Lyme Blots.
Why can't these Drs open their minds and put the children's health first? I always thought there was supposed to be a list of differential diagnoses. It doesn't seem like that's the case anymore.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Well, if it makes you feel any better, which I'm sure it won't, when I tested CDC + with Igenex, after suffering for decades with supposedly
Rheumatoid Arthritis, Raynaud's, Sjorgren's, Hashimoto's, and a host of other dx's, the Rheumatologist and other non-LLMD doctors STILL said,
"false positive!" Oh, and with a positive test simultaneously for Anaplasma and Mycoplasma, too. And having had uncountable known tick bites, and living in the most endemic area in the world.
Then, each year, as I continued to test + for ALL of them, and more, they continued to say that, plus, "Post-Lyme Autoimmune Disease (if they would even go that far).
Ask in Seeking a Doctor if anyone knows of a PCP who is Lyme-Sympathetic. If no one knows here, which is possible, ask in any Lyme support groups anywhere near by, if possible.
Or start interviewing other possible PCP's to see if you can find a Lyme-sympathetic one.
If you really had to, would it be too un-wieldy to cross the river to the US? Might still be a struggle to find the right doc, not to mention the bother.
Someday this has got to change, but that isn't now! What a mess.
Posts: 3778 | From around | Registered: Mar 2008
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posted
Same exact story here with our daughter (12 years old). Canadian ELISA negative, positive Igenex bartonella, Negative Igenex lyme with 1 lyme-specific band IND (39).
Back to our PCP in Niagara, and despite the fact that our daughter has many physical symptoms of a bartonella infection
pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, nightly fever), not to mention a positive ANA (speckled type),
the doctor pronounces Igenex to be "bogus", refuses to do further testing, and suggests that she doesn't have bartonella but really doesn't want to go to school.
He rx'es ritalin for her inability to concentrate and clonipin for her motor/vocal ticcing. He then suggests a good spanking.
Previously she had been Dxed with tourette's, asperger's, motor delay, apraxia, and ADHD.
This is the point where I gave up on mainstream allopathic medicine.
Our daughter's CD57 has increased from 18 to 45 in the two years she has been undergoing treatment with an ILADS-trained LLMD in Buffalo.
She weaned from abx in April and has almost completely recovered from all of her symptoms.
Ticcing has resolved, asperger's has resolved, ADHD has resolved, fine motor ability has improved to a point where she writes better than most in her class (grade 7).
Her bartonella infection also caused her to suffer from PANS (pediatric autoimmune neurological syndrome),
the symptoms of which include: raging, OCD, ticcing, urinary frequency, loss of motor control, social/behavioural regression, light and sound sensitivities, ADHD.
These symptoms would flare with every infection she would acquire (viral or bacterial, but especially with strep).
It was our pediatric psychologist that first suggested PANDAS to me (same autoimmune reaction, but caused strictly by strep infection - like Sydenham's chorea or rhuematic fever).
However in the same breath I was told that long term abx are not available in Canada, and that our daughter wouldn't qualify for IVIG treatment unless she was completely debilitated. The psychologist suggested the Tourette's clinic in Toronto.
I have completely given up on Canadian doctors. We now have a TCM naturopath who is helping us (along with our LLMD) to ramp up on Buhner's bartonella protocols.
My daughter and I are both on the protocol, and doing wonderfully. She is completely normal. Runs and plays, makes friends, is getting A's and B's in a mainstream classroom, celtic dances, plays piano. Life is good!
If you want to find out about tick borne diseases in Canada, go to your vet.
Help is not available here. Even if you do produce a positive ELISA, doctors are constrained from treating long term. You will get the IDSA run around.
The LLMD in Plattsburg is good I hear, although we do not see her. The LLMD in Buffalo is a pediatrician who does see adults.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
Sorry you hit the proverbial wall, so to speak, B&B, with everyone, but the simple truth of the matter is that you're going to need to see a real LLMD, and I'm not sure that Canada allows any - you may need to come to the US and see a US LLMD.
Everyone has been instructed to stand down on Lyme and co-infections. It's very political and very sad. We're having a major rally on it October 5 in California and people are coming in from all over for it.
Posts: 13117 | From San Francisco | Registered: May 2006
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
B&BzMom, Please keep your strength up, you need every bit of energy you have to fright this disease.
The system for Lyme and co's is wrong, as we all know, and it's not going to be fixed in the near future.
You have Lyme Disease, you don't need to be told by an MD. I hope you can find an LLMD, they’ll help you.
I'm so sorry both of your children are suffering with (undiagnosed seizure disorder and Autism).
Please do some research on your children - both of these sings can be Lyme related, which I'm sure you know.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I'm so glad you post, Rowingmom----you are an inspiration, and wise.
B&BzMom, I know this outrage. From leaving abruptly a Kaiser Permanente children's Infectious Disease Specialists office after being humiliated
with a stack full of documentation, testing, outside M.D.'s recommendation all being scoffed at,
to a Target store pharmacist who berated me for going on the Internet when I asked if they had pharmacutical grade Epsom salts- that one left me breaking down bawling
in the middle of the store, I'd had it. While it's good to get these emotions out, I found it eventually unhealthy to keep perpetuating this anger in myself
so I move on now. I'll say what I need to say, try and educate, see if I can get help, if you can't help, GOODBYE.
And God bless us those awake in the midst of this epidemic with innocent children.
Hang in there-----you have knowledge EARLY- this is very good.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Had the same situation happen to my daughter...( me neurotic mother) daughter, victim of neurotic mother...had to go halfway across the country for help for my daughter because all avenues in my neck of the woods were dead ends...and of course I have stupid imprinted on my forehead!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
The GPs are the same here in BC.
My (ex)doc, after I explained the tick bite, the positive igenex test, three clinical diagnoses and a positive reponse to doxycycline basically bit my head off and told me the only thing she'd diagnose me with is a mood disorder.
Oh and to start playing sports again because I was "getting fat".
And that was my last attempt at a GP in BC.
The Canadian system is crooked and full of egotistical brainwashed gp's. All they want to do is write scripts for prescription meds for migraines, lupus, cholesterol and mood disorders.
I am sorry that you went through that especially with your kids.
Best of luck over the line.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Well, I would shove the book "Cure Unknown", by Pamela Weintruab, in their face.
Posts: 1358 | From Midwest | Registered: Apr 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I think I would shove up (somewhere else)****
What a world we live in!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
I've been trying a new angle with doctors, as in you, your family, friends, etc could get this too - walking the dog, out jogging, gardening in the yard, etc. I find that some are listening to me more that way.
Also, when the doctor walks out on me after my attempt to educate them, I then go and educate the staff who can't walk out! I swear, we have an epidemic going on! No more silence! Speak up! Anyway!
Posts: 13117 | From San Francisco | Registered: May 2006
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
It's been an epidemic for a long time, it's only getting worse!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
You know, this is just all so very insane.
I mean, what is this all about?
Just so insurance companies can save a few bucks?
Is it because of the corrupt experiments at Plum Island?
Is it because someone doesn't want to admit they got it wrong and might be sued or lose stature?
It is just completely insane. What are they hiding from?
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
It's about money, pride and ego...probably in that order.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
For some reason I'm having trouble posting links in this box, I sent you a PM with a medical paper that might help.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I tried to send a reply post before, but it obviously didn't go through.
Thank you all so very much for your replies. They are very much appreciated. I hope the heck my psyche can take the rigors of all of this.
I felt as though we were isolated and marginalized when my son was diagnosed with Autism. You lose friends, people don't know what to say to you, you never get a break since there are giant wait lists for Respite funding.
I have spent the last two years fighting the system to get services for my son. I have found that my son has been treated like a 2nd class citizen at times because of his disability.
I had an anesthesiologist at the Children's hospital tell me that they may need to apply physical arm restraints (to my then 3 yr old) if he was combative coming out of anesthesia. That shocked me beyond belief!!
Needless to say, I cancelled his upper and lower endoscopy procedures after that. But tge Lyme issue has only driven us further away from everyone.
I guess my sons DAN! Doctor was right. We are on the fringe. The underground if you will. I guess I will have to embrace the psycho mom title that all the conventional medical people are going to give me!
I was actually hopeful we might get a bit of support from the medical community. Not for treatment, but for managing problems resulting from treatment.
My PCP has agreed to support me, but he also works with my kids doctor, so she may have influenced him to reconsider helping me.
I believe that much of the verbal exchange that occurred during my children's appointment constitutes professional misconduct, and conduct unbecoming of a physician.
I am contacting the regulatory body for physicians here in Ontario on Monday to see if they agree.
I don't think I will lodge a formal complaint against her, but if they agree her conduct was unprofessional then I can send her the letter I have written.
She used 3rd party information to make accusations and what I perceived as threats. The use of 3rd party information alone constitutes professional misconduct.
She went postal on the wrong person!! I've still got fight left in me...I think!
I am now looking for a new doctor for my kids. I of course will make no mention of Lyme to any new doctor I find for them, as it is abundantly clear that no doctor locally, or probably in the entire province for that matter will be lyme-friendly.
It is clear we are on our own. I am fortunate that my parents have the financial resources to fund treatment for myself and my children in the U.S.
I am also fortunate we live within driving distance of most of the endemic States, so we don't have to go incredibly far to see some ILADS LLMDs.
There is a Lyme support group that runs monthly that is only one hour from me, which is great.
I am considering getting additional labs done on myself, through Clongen. I wonder if that is pointless as they are no more likely to believe them than the Igenex ones.
I have also heard you can pay to get private PET scans or NeuroSPECT scans that can aid in a Lyme diagnosis. I am currently exploring those as well.
While I don't really need to prove to these idiot doctors I have Lyme. It would be nice if I could.
How interesting that the medical community can turn a blind eye to this, until it affects them personally.
Many of the ILADs docs have personal connections to Lyme. I suspect if one of my local doctors kids got sick, they might find themselves in the exact same situation as me.
Thank you all again for your amazing words of wisdom and support. I am so grateful to have found this forum!!
-------------------- B&BzMom Misdiagnosed for 19 years. Igenex and CDC positive July 2013: IgM 18+, 23-25-, 28-, 30+, 31+, 34+, 39++, 41++, 45-, 58-, 66-, 83-93 IND. Babesia & Erlichia (IgeneX) Clinical dx of Bartonella
Mom of two. One with Autism. Posts: 14 | From St. Lawrence River Region, Ontario, Canada | Registered: Jul 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I'm glad you're coming out of this swinging with both arms!
That's great!
Yes, I agree very much that it boggles ones mind how much the Canadian docs react negatively to discussing lyme.
I guess ticks can't get approved for passports
If you find a place that does private spect scans, will you please send me a PM? I am interested in that also.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I wouldn't waste too much time with advocacy right now. You are right, no doctor in Ontario is going to listen when you mention the word "lyme"; neither are they going to listen to "bartonella", "babesia", "ehrlichia", "protomyxzoa".
You will wear yourself out and have nothing left for your kids. NO ONE IS GOING TO LISTEN other than your DAN.
You need to focus all your energy on the kids right now. After they and you have been treated and you find improvement, is the time to bring out all the tests, results and charting.
I have been using an Excel bar chart daily to track abx/herbs against symptom levels (1-10). This makes all protocol outcomes (herxes, resolution, recovery) very obvious to both you and the doctors you will be seeing. If you would like a copy as a template, PM me.
I believe that many of the autism spectrum behaviours that our daughter showed prior to treatment were caused by her infections. They have resolved to a huge extent.
Get started on treatment right away, and I would suggest taking exemptions for any further vaccinations. These infections suppress the immune system, which is undeveloped in children anyway. We saw great regressions with the MMR and booster.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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I would love for you to PM me a copy of your Excel bar chart. I am going to need something simple and user-friendly.
You are right. It is a total waste of my time and energy trying to "prove" things to doctors here. I have finally come to that conclusion. Thankfully it was sooner than later, as it was stressing me very much.
I am so grateful you posted on the vaccines. I have been really unsure of what to do about that. My autistic son is fully vaccinated, so I can't do much about that now. I stopped vaccinating my daughter once I saw her showing signs of autism as well. She has not had an MMR. I don't necessarily believe vaccines cause autism, but I do believe vaccines can flare or worsen Lyme & co's. I got worse neurologically (they were thinking I might have MS) after getting the Gardasil shots.
I had my consult with my LLMD on Monday. Lucky for me I was the person on the cancellation list that was the closest to her office. Unfortunately I am more co-infected than I thought. So now we must deal with Babesia, Bartonella, and the Lyme. I also was IgG positive for Erlichia.
LLMD agreed to treat my children. I am keeping my sons appt with M.D. in CT for January. I will start the process of form filling for my daughter so she can go to the same LLMD as me.
I am trying oral for 3 months. Not sure how I am going to do with that, since I can barely finish 10 days of Biaxin for a sinus infection!! I have a diagnosis of Crohn's, but LLMD thinks that much of the G.I. issues, weight loss, sweats etc were actually from Babesia. Should be interesting to see how I do. I am expecting a big herx since I have been sick 19 years and have been treated with prednisone for the Crohn's.
I like the idea of an herbal protocol for my daughter. My son has heightened sense of taste and smell and has lots of texture and food aversions from the Autism. It will be easier to get him to consume conventional abx because of the taste.
We see the DAN doc again on the 15th. Glad someone is in our corner!!
Your daughter has had some amazing improvements which is great to hear. It gives me hope. I can't wait to see how much better my kids can be. It is scary to think that if I had not had the guts to approach my sons DAN! doctor about testing me for Lyme, that we may never have found out. I probably would have had 2 kids on the Autism spectrum and become more progressively disabled myself. Now we might all get a chance at some semblance of a normal life.
-------------------- B&BzMom Misdiagnosed for 19 years. Igenex and CDC positive July 2013: IgM 18+, 23-25-, 28-, 30+, 31+, 34+, 39++, 41++, 45-, 58-, 66-, 83-93 IND. Babesia & Erlichia (IgeneX) Clinical dx of Bartonella
Mom of two. One with Autism. Posts: 14 | From St. Lawrence River Region, Ontario, Canada | Registered: Jul 2013
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am sorry - I wish I had something profound to say -
your children are blessed to have you as their advocate.
hugs
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
B&Bz Mom, maybe try upping your sons dose of Zinc- often the kids are deficient, and when Zinc levels get back up,
aversions to smells and tastes of foods go away... we saw that here.
Hang in there!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I didnt read all but i am glad u r getting good advice
Be careful-kids have been taken away from parents trying to tx them for lyme
Hard to believe but true
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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