Post styloidectomies, my son was "cured" of pain and happy. However, prior to each illness (colds, virus, etc), he would have a return of symptoms and he is still fatigued every day. Why? A nurse friend of ours had us do a Western Blot, FISH and IFA serology blood tests for lyme and other tick borne illness. Previous testing many years ago (ELISA) was negative and an insufficient test for Lyme. He tested positive for one tick borne illness and has results that may be indicative of others. Please, get yourself checked, especially if you have other strange neurological symptoms. I am happy to share the labs we used if anyone is interested. You can find a lyme literate doctor near you by going to Ilads.org. Any lyme literate doctor can order the blood tests from the labs we used. (The International Lyme and Associated Diseases Society (ILADS, pronounced /ˈaɪlædz/) is a non-profit interest group which advocates for greater acceptance of the controversial and unrecognized diagnosis "chronic Lyme disease". ) This illness, if left untreated, can cause so many problems in our bodies. They also go into remission from time to time. Thoughts? Anyone else on here positive for any type of tick borne illness?
"Chronic lyme disease" is widely considered a misnomer by the medical community, due to a lack of evidence that chronic symptoms are caused by continued active infection. It is more properly termed "Post-Treatment Lyme Disease Syndrome" and may be autoimmune in nature. ILADS is a political group that has widely publicized disease theories and treatments that are not yet confirmed by scientific evidence. In addition, the term “lyme literate doctor” is not what it sounds like. In many cases, the “doctor” is not an MD. And, furthermore, what is designated as “lyme literate” quite often turns out to be “lyme ignorant” and willfully blind to scientific evidence. Please see our lyme community for more guidance. Patients are being harmed by irresponsible practitioners, and we have seen this on our communities.
Thank you dancer mom for posting this. I am new to this whole idea and so just learning. My son was just diagnosed 2 weeks ago. I am not familiar with anything you shared and greatly appreciate the information. I will say that the lyme literate doctor that we visited is an MD and she did refer me to that website for others who need to find a lyme literate MD. I will also check out the other Ben's friends lyme link, when time permits.
I'm glad you are seeing an MD, Ear Mom. Lyme has become so politicised that it is very difficult to sort out authoritative information. There are so many unknowns, but it is clear that many have chronic symptoms after an infection and that doctors do not yet have either the testing or the treatments to properly identify or help a lot of these folks. There is a promising new test under development, which is a start, but many of the current tests are about as useful as a magic 8 ball. It's a very frustrating situation for patients. I hope your son's symptoms diminish over time.
I was tested for lymes before my MS diagnosis but it was neg
Yes,all my symptoms started 10 years ago, age 42 when I was so, so sick. I was diagnosed w/ Rocky Moutian Spotted fever. I had a MRI, back than & it showed a blocked juglar vien, we all chalked it up to the tick bourne bacteria parasit. No one would pursue why the jugular vien was blocked, told me it will upblock itself. Over the years those choking feelings in my neck would flare up from time to time along w/ many, many other symptoms from ES. Was FINALLY diagnosed w/ES (after the fustration of many doctors & hearing menopause/depression crap) by taking an ENT's doctors finger in my throat & asking him, "What the hell is that lump back back there!!??" He sent me for an CAT scan w/contrast which confirmed the elongated styloid/ ES. I still have not had surgery for the removal, I have just been living w/ my new normal, but it is wearing on me. Everyday I question God is surgery going to finally heal me?
tbone - my son was scared to do the surgeries to remove his styloids, but he said he would do it again in a heartbeat. It is the one thing that gave him his life back after years of suffering and trying medications and alternative treatment. If you get a surgeon with experience who has helped people with this surgery, you should be okay. Sometimes, we need medication; sometimes we need surgery. The doctors are here to help us in our journey toward healing. You won't know if it will help you until you to it. Sometimes, we need to leap before we are blessed. And thank you for sharing your story and your battle with the Rocky Mountain Spotted Fever.
So much to say, so little time...my other sister has had chronic recurring Lyme for over 15 years. About ten years ago, I got her started on a protocol involving Peruvian Cat's Claw (Uncaria Tomentosa)...she went from nearly-wheelchair bound with several courses of IV antibiotics per year to nearly symptom-free. NOT cured (that's my other project, lol!), but when she is under stress or her immune system is overworked (colds/flu), she takes a few doses of Cat's Claw and is able to keep the spirochetes in control.
EarMom, I hope to talk with you more about this soon!
Thank you Jeanette for your reply. And yes, I would be happy to chat more. I will "friend" you in this site.
Here is a bit more info on Uncaria tomentosa: http://www.ncbi.nlm.nih.gov/pubmed/16042502 and
Thank you for posting this!
I've given this a lot of thought too. It does not sound far fetched to me that ES may be connected to an infectious disease.
Before I was diagnosed with ES, I was diagnosed with Epstein Barr by several doctors over the better part of a year. The odd thing is that I continuously tested positive for only the VCA (viral capsid antigens). This indicates a recent infection. I tested as such for almost a year. No short term anti-bodies (EA) and no long term anti-bodies (EBNA) and no history of mono.
Something else is triggering those antigens.
Like your son, I have transient extreme fatigue.
I tested negative for Lyme's, but it looks like a percentage? Not sure how the test works.
Hope your son continues to be happy and relatively pain free. Great to hear about ES recovery!
mt83, you are putting your faith in the wrong sources. Please read these:
In addition, please be aware that Horowitz has been in trouble with the NY State Dept. of Health and was put on probation from 2007-2012 for failing to refer patients to necessary specialists or obtaining informed consent, for instance.
This is an old discussion, and has now taken a turn into politics, so it's time to close this thread. I'm happy to continue this discussion with you privately, mt83.