New member seeking advice (Lyme/PANS/ASD/EDS)

[Steph444]

Hi everyone! I'm so grateful to have found this forum! My son and I were recently diagnosed and I would love any help/advice you could give.

 

I'll give some background - I'm 38 and have been chronically ill since 19. Started with flu symptoms that never went away, was dx'd with Mono several times, then chronic EBV. Many new and worsening symptoms led to dx of CFS/Fibro 10 yrs ago, and 8 yrs ago after neuro symptoms started with atypical MS. No treatments ever helped. I went to the Holtorf clinic in Philly for CFS as a last resort in January, and the Dr said my case sounded like Lyme (this was the first time the possibility was mentioned, and was never on my radar). It took several months to find a Lyme specialist nearby (I currently live in Nashua NH - 30 mins from Boston) and get tested - Dr. Hecht ND. Igenex came back positive for Lyme, Babesia (duncani), Bart, Mycoplasma, and several viruses. He also found I have two copies of the MTHFR mutation, POTS, hashimoto's, and severe anemia. He did an HLA test and said it was the "dreaded" type and I can't detox. I had no clue about any of this and so am trying to do a crash course in learning what it all means. The problem is my brain fog, vision loss, and memory impairment is really bad now, and I can only look at a computer screen 10 mins at a time. I also have no help, so am trying to do what I can on my own (no family nearby and husband left a few months ago). So, I know many of you are probably experts and know more than most docs If anyone would have the time, I would compensate you to do a phone consultation to help me figure things out and offer some guidance.

 

I have two boys, ages 12 and 5 who were both dx'd with autism at age 2. My 12 yr old is verbal but lower functioning and very symptomatic, the 5 yr old is high functioning with minimal physical symptoms. Dr. Hecht said they both likely had congenital Lyme. Only older son has been tested so far, results came back positive for Lyme (western blot and PCR), Babesia, Bart, Myco, he has the MTHFR mutation as well, and elevated liver enzymes. He was also dx'd with PANS/PANDAS (strep titre was positive). He has had scarlet fever several times since age 3. He doesn't have severe aggression or rages, but has extreme anxiety, OCD, tics, separation anxiety, incontinence, and has been mostly housebound for the last year (had to pull out of school 4 yrs ago because of anxiety). I was always told it was just the autism, and this was typical. It was a nightmare trying to get blood drawn on him and took several tries (he has a major phobia about blood) - they couldn't get enough to do all the tests, so he tried to prioritize. DS hasn't been sleeping ever since, and refuses to go anywhere near a dr office now - he breaks down in a panic attack. During the exam, Dr. Hecht noticed he had hyper mobile joints also, and said he likely has some form of Ehlers Danlos Syndrome. I've mentioned the hypermobility to several pediatricians before, and they all disregarded it. Now I have no PCP for us, as we were kicked out of the practice when I mentioned the Lyme. It was hard to find them to begin with because I don't vaccinate (they are both completely unvaccinated), and I haven't located a new Lyme friendly primary doc yet to get a referral for an EDS specialist. Lyme and co infection symptoms are rapidly increasing also, and puberty is starting - he is in pain everyday, his joints, back/neck/feet, muscle weakness, headaches, chills, constant ear ringing, stomach pain and constipation, numbness and tingling, stabbing pains, chest pains, brain fog, insomnia despite constant fatigue. I give him ibuprofen as needed and it helps a little with some pains.

 

Now I'm searching for a more experienced Lyme specialist. I can't travel too far, but can get down to mid-atlantic, and I have family in Philly area. Do I need a pediatric LLMD for DS? Are there any that can also treat PANS, or would I need a separate specialist for that? So far I know of Dr. Jones and Dr. O'Hara in CT, and Dr. Corson in PA who work with kids. Does Dr. Horowitz treat kids? If not, should I try to get in to see him? I heard about the new PANS/PANDAS clinic at MGH in Boston, but am afraid to bring DS anywhere near a hospital now since the Justina case and the many other children who have been kidnapped. Any doctor recommendations you can give would be wonderful!

 

Dr. Hecht is willing to try treating DS, but I don't feel comfortable since he hasn't had much experience with kids, especially with PANS involved. He suggested starting with Omnicef and Mepron. I'm nervous about using long term abx since he has elevated liver enzymes already and likely can't detox. I am only doing the vitamin/mineral supplements and herbs he added/changed for now (curcumin, artemisinin, therbiotic, floramyces, aloe juice, transdermal mag, melatonin, methyl b-12/folate(methyl factors), increased D3). DS has been treated by several naturopaths (one was a DAN!) in the past and has had a regular supplement/dietary regimen for yrs, plus homeopathy, on and off nystatin for yeast, OMT, CBT, hypnosis - but nothing has really helped so far. It's hard to believe none of them picked up on the infections! I only tried DS on Prozac once and didn't like the side effects, so took him off after a couple months. I prefer to use natural treatments when possible. I did just rent an iMRS pemf system to try, and so far it seems to be calming him a bit and helping to sleep more than 15 mins at a time. I was considering trying CBD oil, but don't want to add anything else now on my own. As for me, I'm just doing zithromax and the supplements for now, plus iron infusions. I had a bad reaction to Mepron (started seizure activity after a couple days), and am allergic to many abx (doxy, cipro, clindamycin so far). Dr. Hecht wants me to get a port and start IV abx very soon, but I can't afford that and am afraid of getting worse with the herxing - I can barely walk and take care of the kids as it is. He's worried because I am declining rapidly, and have an enlarged spleen. Next on the list is getting my younger son tested and figuring out if he should be treated too.

 

I'm sorry this turned into a novel! Thanks so much for your time reading this, and any advice you can give!!

 

Take Care,

Stephanie

[momslove]

Having no particular expertise to offer, I write to say my thoughts and prayers are with you. I hope you can draw encouragement from knowing about the infections and genetics. Others on this forum have much greater knowledge than I do about all of this and will offer information and support, I'm sure.

[NancyD]

Stephanie, I will PM you.

[pr40]

There is Dr Hubbuch in Watertown, MA. She is LLMD and she is a family dr. she does not take insurance.

I'd start with her, see if she can help you.

MGH is different than Boston CHildren's where Justina was. MGH has PANDAS clinic and you may want to try there -- I think you are not going to have much luck with them, but given the numerous issues that you and your children have, hospital may be your best bet.

We live in Portsmouth, NH and, in general, New England is not a great place to have PANDAS/Lyme combination. Dr. B in CT might be of help for you as well but he is hard to get an appointment with.

Good luck

[mama2alex]

I think given your situation, your first priority is to find a well respected and experienced LLMD who treats both kids and adults, and who's versed in both antiobiotics and natural treatments. If you start a new thread with a topic such as "Need Integrative LLMD in/near Nashua, NH for Adult & Kids" you'll hopefully get some replies with recommendations. Please be careful with your own treatment. I was sensitive to several antibiotics, but was getting nothing but negative Lyme tests back, so I decided to do an "antibiotic challenge." I became extremely ill and had to stop the abx after 3 days, and my symptoms exploded after that. That was almost two years ago, and I'm still not quite back to where I was. My doctor (an integrative LLMD) has been treating me with herbals for Lyme & co with good progress. The only pharmaceutical I'm on is cholestyramine for mold.

 

Have you visited Lymeinducedautism.com? You might find some resources there as well.