posted
First off a huge thank-you to all u wonderful folks here who PM'd me the names of LLMDs in NY state. I am grateful for the info, but admit I am paralyzed at the moment.
Feeling as though the weight of the world is on my shoulders. I am struggling with the decision about what LLMD to choose and what type of treatment to pursue.
If this only impacted me, I wouldn't be so stressed out, but I have a 4 year old son with autism who requires treatment as well. I feel like if I make the wrong decision now, it could have lasting consequences for him.
My recent Lyme diagnosis has come very late (19 yrs late to be exact). I have read scads of info on the different doctors, treatments and protocols. I just want to make sure I get my son to the right person, and give him a chance to get well. I could honestly care less about myself at the moment.
If there are other Lyme moms here who have a child with autism, PLEASE PM me!!
My son's health is already precarious. I'd hate to put him in the hands of the wrong doc and make him worse. He's had recurrent kidney infections, GI bleeds, shingles, and major yeast problems which we are currently treating. He is super sensitive to most medications, and has a very dysfunctional immune system. He's been chronically ill since birth, but at least now I know the Lyme was probably to blame.
Anyone know if either Dr. R or Dr. H in NY treat kids? It would be much easier for both myself and my son to get treated by the same doc. For him I want one who uses immune support/supplements/herbs and who will try to minimize candida, since my guy can't tolerate anti-fungals (they made his autistic symptoms way worse). He does extremely well with custom probiotics.
I am just completely overwhelmed with the decision-making process. I feel that my sons future rests on my decision!! The child has already gone through so much pain and suffering. All he's known is a life of pain and illness. I just want to do the right thing.
Sorry for the long post. Just overwhelmed about everything since it is all new. The good news is, that there is hope for both of us to get better......if I could only get past my indecision and fear and choose a LLMD to treat us!!
Thanks for listening
Forgot to update my profile with my Igenex results, but FYI I am positive for Lyme and Bart.
-------------------- 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
Take a breath. The fact that you know what you are dealing with puts you ahead of the pack.
I unknowingly gave my son Lyme while I was pregnant.
When he was 2 he had autism traits. He was so bad off that I remember crying one night because I was scared he would end up in some sort of special "home" because he was constantly freaking out.
Once I started Lyme treatment, I had him tested and sure enough, he was positive.
He was only on Amoxicillin for 4 months TOTAL. He made amazing progress and went from no eye contact, repeating "Thomas and Percy and James" over and over, ignoring other kids, flapping his arms, screaming all the time...to making eye contact, speaking conversationally, playing with his friends, and on and on.
He is now sooo loving. He hugs me all the time and tells me that he loves me, which melts my heart and gives me strength to keep treating myself to try to get well.
He is now only on Supplements through a DAN! Dr to maintain his progress. He is now considered a typically developing 3 yr old! Just a year and a few months ago, he needed Early Intervention services and now he is fine!
The key is that you know you're dealing with Lyme and are seeking help. Any ILADS Dr is better than none. Yes, my husband and I see Dr H in NY. However, our son has not needed to see him.
My best advice is to find a DAN!/ARI Dr who is ILADS educated. That would be your best bet. Otherwise, just see an ILADS Dr who treats children.
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Your child can get relief. Absolutely. Has he been treated before by a specialized medical autism Dr., called
DAN! (Defeat Autism Now) or the new name MAPS-
Generation Rescue has a list- but because he has Lyme, LLMD would be best, but special diets, gut treatment, sound in order to start, to heal....
If Dr. R is Dr. Rh (can't spell out name here, lol) health center He does have a lot of experience with healing spectrum issues, and Lyme.
Hang in there--- one day at a time. I have been and went through the trenches with my daughter for years---- Pace, not race.
-------------------- 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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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I re- read your post, and I'm sorry if I sounded patronizing - I hope I didn't. Sometimes I can't write with the tone I want to convey.
My daughter was also very sick- I know your pain. We have made a lot of progress---- she is in a typical classroom,
and now can eat regular food with digestive enzymes. But, she is a very complicated case, with an autoimmune disorder called PANS,
and despite care with the very best DAN! Dr. in the country and 2 LLMD's, there are still times of struggle. For her, I'll be honest, some damage cannot be 'fixed'. But quality of life is better- still challenging periods at times. It is hard.
My previous post about Dr. Rh in the health care center with Dr. B, they have years of incredible experience with the type of serious gut and immune issues you are
describing in your son, AND, they treat Lyme. If you have the means and way to get him there for treatment, you are extremely fortunate.
It is massively expensive. The only way I could get my daughter care was to use a retirement account I had built from a previous career.
So try and stay positive.
-------------------- 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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posted
So glad you were able to find us here! We have a very supportive group!
You may be interested in this FB group on Candida. We have several moms there who have had success with the Body Ecology Diet for their autistic children!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I can't offer advice, only support.
It sounds like you are a really great mom, and I am sure that you will follow your best judgement and intuition and pick the best doc for you and your son.
I am so looking forward to reading about you and your son as you both get well and recover from this infection.
You're in a tough spot right now, but just think, in a few months, a year maybe you'll be so glad you took the time to be sure about a doc because you and your little guy will be getting better.
Lots of hugs your way! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Don't want to add more to overwhelm you, but you may want to consider the mthfr mutations. A lot of "autistic" children have difficulty with the methylation pathway. (You also mentioned he was super-sensitive to medications.)
As a mother who is also in treatment and had two of my daughters sick at the same time, I know that overwhelming feeling and the need to make sure you are doing EVERYTHING you can.
Both of my girls are in remission. We are doing immune support and herbs to keep them there.
I just try to remind myself that God's grace is sufficient.
Posts: 538 | From kentucky | Registered: Nov 2011
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quote:Originally posted by soccermama: Don't want to add more to overwhelm you, but you may want to consider the mthfr mutations. A lot of "autistic" children have difficulty with the methylation pathway. (You also mentioned he was super-sensitive to medications.)
- That is because most with MTHFR also have candida, which many (ALL?) autistic children have.
Sorry for the delay in my reply. I've been busy sending off my 19 year medical history to the LLMD I'm going to be seeing. I chose an ILADs doc of course. One who is within driving distance of me across the border in NY state. I go December 11th for my first visit.
I still have not yet decided where to take my son for treatment. One Ped LLMDs office isn't calling me back, and the other has a 12 month waiting list. Aye. I am currently looking at the JMC since they have a NP who treats peds. Trying to decide who should treat my children is driving me crazy!!
My daughter, while not diagnosed with Autism, has autistic traits and is on the list for early intervention services. She has some sort of seizure disorder that we are waiting to see a neurologist about. I suspect both of my children are affected by Lyme. We are in the process of testing them through IgeneX.
Lax mom- I am so glad to hear that your son made such wonderful progress with treatment. Hearing that is reassuring, and it gives me hope!
Lax mom & Surprise- I have been taking my son to a DAN! doctor (M.D.) here in Canada. We see him every two months. I brought my concerns about me potentially having Lyme to him, and he ordered the IgeneX labs on me. We both felt that if I did indeed have Lyme, it would change my son's treatment plan (since he would have been infected congenitally). Our DAN! doctor is not lyme-literate though. There are not many cases of Lyme here in Ontario, although if I got bitten 19 years ago, then there are bound to be others, just not diagnosed or reported!! He wants to start my son on colloidal silver. I have researched the heck out of it, and I don't like a lot of what I've read.
I was not speaking of Dr. Rh. Not sure who they are. I was speaking of Dr. R in the big apple. I have heard of the RHC in NY, and I believe this is the group you mean. I will have to look at them a little harder if they are DAN! doctors and are ILADs trained.
I do not have the means to pay for my son's treatment, nor my own. Fortunately my parents have agreed to fund my son's treatment and mine, although I don't think they fully understand how much it costs! They will cover whatever my credit cards can't!!
Hoping and praying- thank-you for the resources. I am in research mode, so will definitely check them out.
Lymetoo- I think both myself and my son belong in the Candida group. I've had major issues with it myself. I will definitely be checking that out.
Soccer mama- My son had genetic micro-array testing after his autism diagnosis. I assume that it would have identified the MTHFR gene problem. I do know many children with Autism have methylation issues. I have read scads of DAN! books and books by parents who have done the DAN! protocol. I also read the Myth of Autism book about the Goldberg treatment protocol. My son's blood work shows the exact issues they say are present in children with autism (including the methylation problems), so maybe his genetic test did not test for this MTHFR mutation. I will ask the DAN! doc at our next visit.
Thank-you all for listening and for all your wonderful suggestions. My Lyme brain is going crazy
-------------------- 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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