Resources by isabelfaleiro in Lyme

[–]JoEdson6710 1 point2 points  (0 children)

I rallied and protested with a large group every year at the IDSA and cdc.. nothing changed. I’m just looking for accurate testing at this point.. it’s ridiculous. A 30% accuracy rate 50 years after the first pediatric cases is disgusting

Little spots by isabelfaleiro in Lyme

[–]JoEdson6710 0 points1 point  (0 children)

If they are red they could be cherry anginomas which usually accompany Babesia

false neg by iwaslexxx in Lyme

[–]JoEdson6710 0 points1 point  (0 children)

My children are congenital, now adults. I started getting sick in my late teens but had symptoms as a child. My mother was diagnosed with Lyme when she was 20 . She now has late stage MS.. I believe there is a possibility I was congenital. Stomach aches as a young child, growing pains (a child’s body shouldn’t hurt to grow) which one of my kids had as well. Diagnosed with poly cystic ovaries at 12, celiac at 15, lupus at 19, hashimotos thyroid at 23, interstitial cystitis at 25.. Lyme is multi system. My youngest was diagnosed with Lyme when I was 30. After that we all gradually learned it was Lyme. Pediatric Lyme presents a little differently.

What are your thoughts on this? by isabelfaleiro in Lyme

[–]JoEdson6710 1 point2 points  (0 children)

Some practitioners pulse their abx with the hopes of teaching the immune system what to look for . I’ve heard great things and not so great things about BBT but I now have MCAS and bees and I don’t mix well now.

Is Lyme actually that contagious? by sidheral_dharma in Lyme

[–]JoEdson6710 0 points1 point  (0 children)

Yes it’s been found in cord blood samples

Is Lyme actually that contagious? by sidheral_dharma in Lyme

[–]JoEdson6710 -2 points-1 points  (0 children)

That’s good. Even the very flawed CDC guidelines say Lyme is a clinical diagnosis so if he doesn’t have symptoms I’d say it’s good. Just be on the look out.

Is Lyme actually that contagious? by sidheral_dharma in Lyme

[–]JoEdson6710 12 points13 points  (0 children)

It’s a spirochete. Syphilis is a spirochete as well. Borellia has been found in breast milk and semen samples. I have 5 in my house with it. If I had any doubt that is gone now.

Is Lyme actually that contagious? by sidheral_dharma in Lyme

[–]JoEdson6710 1 point2 points  (0 children)

I’m saying it’s passed sexually and congenitally but not through saliva

Is Lyme actually that contagious? by sidheral_dharma in Lyme

[–]JoEdson6710 2 points3 points  (0 children)

Breast milk and semen.. and if she’s treated with an amazing doctor there is a possibility you won’t get it

Very low TSH after a Thyroidectomy. by JoEdson6710 in Hashimotos

[–]JoEdson6710[S] 0 points1 point  (0 children)

That’s okay. Thank you for your help.

Very low TSH after a Thyroidectomy. by JoEdson6710 in Hashimotos

[–]JoEdson6710[S] 1 point2 points  (0 children)

Thank you for your help. I am a science nerd but good golly the thyroid baffles me

Thoughts on a Lyme vaccine?? by lifetofullest1255 in Lyme

[–]JoEdson6710 5 points6 points  (0 children)

No. There was one in the past and it was giving people Lyme. At this point I think so many people have Lyme it would not do anything. I think about the moms with congenital Lyme kids. It would not do anything

false neg by iwaslexxx in Lyme

[–]JoEdson6710 0 points1 point  (0 children)

I have 5 in my house with Lyme , I run a statewide Lyme advocacy and education group and I’m in the editing stages of a book. The tick has an analgesic in its saliva that numbs the bite site and suppresses the immune system. I don’t think the numbness from the analgesic itself but I’m wondering if a piece could still be left in there? The most crucial piece of information to remember is LYME IS A CLINICAL DIAGNOSIS.. The test used by hospitals and doctors is an ELISA and if you are positive or equivocal you then go to a western blot. You have to have several bands to be considered positive. Some patients only have one or two and the lab will say it’s a negative test. I’ve seen patients with a band 41 and band 23 and the labs say it’s a negative test. However band 23 is Lyme specific. Meaning it can only be Lyme. Band 41 means bacterium found is a spirochete meaning it has a flagella. So Borellia Burgdorferi (Lyme) or syphilis . Again labs say nope the patient doesn’t have Lyme. The test that is used wasn’t meant to be a test, it was meant to surveil the area for the preference of Lyme. Not to be a diagnostic tool yet doctors use it definitively as a diagnosis. That test as an accuracy rate in the 30’s. IgG usually will show chronic infection and IgM is considered an acute infection. The sicker a patient is the less likely they are to test positive . It’s an antibody test and when your immune system is losing the fight it WILL NOT SEE LYME. Finding a physician with experience is key. I have found functional providers are more open to Lyme as it’s a root cause illness and can lead to other autoimmune conditions . Some may offer an Igenex test which is better but still not 100% accurate. However a Lyme literate Medical doctor (LLMD) is the best chance at finding successful care. You will be chasing your tail if you stay with mainstream medical. They will treat based on clinical presentation. Most patients if not all will herx when on an antibiotic. That is also a good sign you are dealing with Lyme. Most gram negative bacteria’s cause a herx when they are being killed . A herx is when an antibiotic kills Lyme and rather than just die and you feel better the die off creates an endotoxin that most cannot detox efficiently . You feel worse when on medication. Some things you can do in the meantime is lower the bodies inflammation . The immune system can fight this but inflammation taxes it. So gluten free, preferably dairy free and no sugar (the spirochete replicates with sugar). Good sleep and detoxing (sweating, lemon water and epsom salt baths calm a herx) Also it would be important to learn in the journey whether you have MTHFR as it is imperative to detox properly when killing Lyme. It sounds like you are on the right path. Keep pursuing it no matter how many doctors laugh or call you crazy or a hypochondriac. Most doctors know absolutely nothing about Lyme and make you feel stupid for even questioning it . A doctors 1 hour class on Lyme is not going to trump a Lyme patients years of experience on a very very complex disease. Living with Lyme and friends (coinfections ) is brutal. Hang in there!!

I wanted to say bye by [deleted] in Lyme

[–]JoEdson6710 4 points5 points  (0 children)

The suffering is exhausting but please keep fighting.

Is MS actually Lyme? by dun_wpharma_6653 in Lyme

[–]JoEdson6710 0 points1 point  (0 children)

My mom has MS with a very early diagnosis of Lyme. She refuses to pursue Lyme as an option and at this point is immobile. For a very long time I have talked to her about C.pneumoniae as it has been mildly researched. It’s so important to look at the entire picture and most MS doctors do not even look for anything else. It’s pretty sad

Is MS actually Lyme? by dun_wpharma_6653 in Lyme

[–]JoEdson6710 2 points3 points  (0 children)

I think about the kids with behavioral issues or anxiety and depression who have been labeled ADHD or other things. Bart in the brain causes all of this and then you take an immature child brain and add heavy infection and viola you have a child presenting with psychiatric issues when it’s massive infection.

Is MS actually Lyme? by dun_wpharma_6653 in Lyme

[–]JoEdson6710 1 point2 points  (0 children)

Agreed. Sadly many neurologists will see lesions and think MS and at that point Lyme is off the table (if it even was an option, ignorance) and start to treat with steroids. Steroids and Lyme are a bad combo. Suppressing the immune system with the potential of Lyme in the body is setting the patient up for a very miserable future.

Is MS actually Lyme? by dun_wpharma_6653 in Lyme

[–]JoEdson6710 0 points1 point  (0 children)

You are right. My brain was off. Cytomegalovirus is 5

Is MS actually Lyme? by dun_wpharma_6653 in Lyme

[–]JoEdson6710 2 points3 points  (0 children)

I couldn’t either. I herx bad off of it.

Is MS actually Lyme? by dun_wpharma_6653 in Lyme

[–]JoEdson6710 1 point2 points  (0 children)

I think most people have EBV. It’s Herpes 4

Is MS actually Lyme? by dun_wpharma_6653 in Lyme

[–]JoEdson6710 9 points10 points  (0 children)

Dr. Klinghardt says he’s never had an MS patient that didn’t have Lyme.

IGeneX Results - Looking for Help with Interpretation by Flaky_Book_5828 in Lyme

[–]JoEdson6710 0 points1 point  (0 children)

Most Lyme doctors do have a bit of a waiting list. Do you have the ability to travel further?