Getting a diagnosis

Hi MMR,

Sorry to hear about your son's troubles. No, most likely your doctor or doctor's office will not have heard of it and will redirect the possibility of Lyme to something else unless they practice integrative or functional medicine.

It's sad that that's what's it's come to, only being considered by a branch of medicine that's barely practiced. It doesn't matter anyway, the tests are anywhere from % 30-50 accurate.

Look up a company called Igenex and they do more in depth Lyme testing. However, you have to have a familiar doctor/Naturopath doctor or other licensed provider to obtain the blood sample.

You can go to the ILADS website. This is the International Lyme and Associated Disease Society for a directory of doctors or providers that treat this in your or close to your city. Closest may be anywhere from a neighboring state or city. Depending upon where you are, you may have to travel or Skype with a provider.

Be prepared for a waiting list or possibility that provider may not being taking new patients. Be prepared for the possibility that provider may not even be an MD/DO or Nurse Practitioner, but a chiropractor or a naturopath aka "ND" and you may have to pay out of pocket.

Under normal circumstances you'd think you'd be referred to a neurologist or infectious disease doctor. Most, in these branches refuse or outright deny the existence or treatment for Lyme & definitely chronic Lyme.

Good luck and wishing your son healing vibes.

Post Edited (ElizKA26) : 10/18/2019 7:20:46 PM (GMT-6)

Thank you for your responses. We do have an appointment on the 5th with a Lyme literate doctor recommended at the meeting. I will ask him about the Igenex test. When I took him to the doctor a year ago, he said he felt like someone was stabbing a knife in his spine. Then he lifted his shirt and showed her a rash. That was the first I saw of it. She said it was shingles, and treated him for that. We went to a neurologist, but he said, "autistic people just feel things differently." My son is on the autism spectrum. So often, his symptoms have been blown off because he is autistic. He also was sent to the psychiatrist and put on Zoloft. The psychiatrist was the only one that listened and believed that some of his symptoms were really neurological. He put him on Cogentin. That is the only thing that has helped the muscle spasms. But, they are still always there, just more bearable.

MMR said...
I wish I had taken a picture of it, but it was a year ago, and I don't remember. Is there anything we can be doing for him between now and the time he sees the doctor?

Hi MMR - I’m glad you’re taking him to a LLMD.

In the meantime - it would be helpful to start him on a detoxing regimen.

Start with one or two methods and every few days add in another one.
Have him detox everyday.

Some ideas:

- drink plenty of water daily

- add fresh squeezed lemon to some of the glasses of water (drink with a straw to bypass the teeth - so it doesn’t damage the enamel)

- take warm Epsom salt baths

- dry brush the skin prior to bathing

- start him on probiotics - he will need to be on them once he starts abx. I have a few different types that I rotate - I take at least two different ones each day

- moving the body - if he can go for even a short walk every other day...

- Take a binder - eg. Activated charcoal. This needs to be separated from meds, food, supplements by a few hours.

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Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi