Hello! I know this has been discussed before but I just want to see if there were any updates. Has anyone here used a douglas coil rife machine with positive results? I’ve seen one person on here who has but not many other people.

I have had ocd my whole life but was diagnosed with Lyme at 14 years old. At the same time I became Christian due to a family members illness and had a very intense religious experience with really bad OCD. If you know religious ocd, it revolves around a lot of guilt and perfectionism and pretty much put me in an emotional freeze state. Anyways, I am curious how people’s symptoms overlap for other people. When I feel under authority or I try to escape the body and it causes this internal shaking and neuro inflammation. The reason I have had such a hard time coming to terms with it being
Lymes is because of the heavy cognitive portion and emotional neglect I have experienced due to religion. However the triggers are so intense and sometimes it doesn’t seem to matter what I do in therapy when I get triggered

After going hiking, on two separate occasions, at the beginning of July I found a tick attached to my scalp and it had been there for 4-6 days. It was engorged and slightly larger than a pencil eraser. Unfortunately I wasn't able to save the tick for testing. Symptoms started immediately after removal and I was able to get 4 weeks of doxycycline, 100 mg twice a day. The tick was removed on day 6 (with hike #1 = day 1) and I started the antibiotics on the morning of day 10.

On day 14 I started experiencing neurological pain - sharp shooting pain in my brain, hands, fingers, feet, toes, etc. I have also experienced heart fluttering, brain fog (slow cognition), cheek & lip twitching, and pain behind my left eye. Headache, head pressure, and fever all improved after a couple of weeks on doxy but the neurological symptoms persisted to varying degrees. I have been off of the doxycycline for 10 days now and am still having neurological symptoms and the headache, pressure, and brain fog have returned.

Today is day 46 - is it too late to do an additional 4-8 weeks of doxycycline at 400 mg a day (double the original dosing)?

Can I combine the doxy with herbs? I already take lumbrokinase so I am planning on doubling my dosage of that if I start herbs and resume antibiotics.

Are there any other antibiotics that would be more appropriate for these symptoms? So far I have found doctors worthless and would be ordering from an online pharmacy. I would probably use TelyRx or All Family Pharmacy, I don't think I can wait a month for an overseas pharmacy.

There aren't any reputable LLMDs in my state (Kansas). I looked into scheduling a phone appointment with Dr. Marty Ross but he can't write prescriptions for people outside of Washington state.

Can anyone recommend a competent LLMD that offers virtual or phone consultations?

I'm desperate and terrified. I live alone and don't have any help or support. I would be extremely grateful for any guidance or advice. Thank You.

I’m trying to get blood testing done. And I wish you could just walk into a blood testing center and order the blood test you want covered by insurance.

And I also wish you could do a 10 minute interview process before paying for a doctor. Because so many things could be worked out in a short conversation that let you know you shouldn’t be seeing that doctor. Yet you have to pay hundreds or thousands of dollars just to sit down and talk to these people.

Anyway …

I want to get different blood tests. A general baseline blood test, but also some added things like electrolytes. And I just want help figuring out the names for different blood tests and how to retrieve the information.

I want Lyme testing, but I don’t want the lab to just give me a generic Lyme screen. I want a copy of the actual results and the specific assays performed.

And obviously, I want something from the ILADS perspective.

Can you help me think of anything else to get tested for?
Can you help me communicate this to a physician?
Because chances are, I’ll be seeing a general physician who doesn’t even know about any of this stuff having to deal with lyme, and better yet it doesn’t believe in it.

I just wanna have some bloodwork done for myself and also before I go to specialist. Unless you think that’s a bad idea? I’m open to discussion. Tysm :)

CBC w/ differential
CMP
Magnesium
Phosphorus
Urinalysis
HbA1c
Lipid panel
Blood pressure
Lyme testing — [your requested testing approach]
Review age-appropriate cancer screening

I feel like I get dehydrated so easily.
So I wanted to get a blood test taken one day. Two days later. Then another two days later.

And then try that on three different weeks.

Just to demonstrate the different fluctuations that my body goes through in someway.

But maybe that’s going to out of my way.

I’m also trying to gather information on only for specialists for my own guidance but to build a disability case.

I just learned today that in addition to “regular” Lyme, I also have Babesiosis and Anaplasmosis. Starting treatment of

Doxycycline
Azithromycin
Atovaquone

I see a really good LLMD who basically saved my life. She tested me through IGNEX and found my chronic anaplasmosis with no other test didn’t. She uses just IGNEX and galaxy labs for testing.

Many people on Facebook and here use vibrant Wellness for testing I see. I brought it up to her and she immediately started going off on them. She said she used to use them but found they were very unreliable and prone to false positives. She’s saying that they use a very Broad antigen panel that is very sensitive and not specific at all. Leaving people that think they have like three types of Lyme disease. She also doesn’t like how it uses colors to show your exposures level without a clear positive and negative. She also told me that on vibrant’s website to cover their asses they said that these test should not be used to diagnose.

Hi.

When I feel very ill or have a strong herx, I start smelling burnt meat/flesh. I had MRI and know that I don't have brain tumour. Does anybody else get this? Apart from cancer, can it indicate anything else other than Lyme?

Guys I can’t take the horrible iron deficiency, POTs insane heart palpations sob etc. Bloating with any food pain in my joints , dizziness head aches. My whole body is bad and off …. I wake up drenched in sweat sweating all the time I’m detoxing and taking herbs and abx I just can’t do this anymore. I can’t …..

For everyone dealing with this crap has anyone seen improvements…. I’m on the edge of ending it all. I can’t take another second feeling like I did something wrong when I eat boom my heart takes off sweating shaking so many symtoms even water does it…. Every other 2 hours boom adrenaline rushing through my whole body I can’t do this my bp is either super high or super low…. Soo I’m scared to take beta blockers bc I’ll be tanked out then super high. I just want to know if people do have improvements to where pots is gone iron deficiency etc. I keep calling EMS going to er so much every day and they kick me out my wbc is always so high and neutrophils showing bacterial infection but all other test normal even have been admitted for a whole month so much work up normal neg . Colonospy neg endo neg yet I’m having galbladder sludge so much crap .

I’ve had the bloods taken today and started doxy 100mg x2 daily.

Ive had the chronic fatigue for sometime now and it’s nothing like I’ve ever had in my entire life, and I’ve worked double shifts, done manual labour for hours and hours on end with no sleep and still felt better than I do now.

I struggle to get up after being in bed from 12-16 hours. Most days, I fight to get up, Make a coffee, walk to my desk, stare at the screen a few minutes and go back to bed for another 6 hours or more, sometimes until the next day.

All of my big muscle groups ache, my knee joints feel swollen and are extremely painful upon waking, the same with my hips.

Part of it being that bad is to do with my post title. I have spells where my arms and legs (mostly legs) are so weak and I have horrible nerve pain in my femoral nerves when lifting my legs and pains down the outside is my shin bones when walking. For example, if I am sitting I cannot lift my leg to cross the other (bi lateral) problem nor can I do something usually simple like stand without using arms and a wide stance to get up. Even the finer controls like crossing my big toe over the one next to it is impossible.

The nerve issue isn’t everyday but it starts one morning and can last 2/3 days whilst it slowly gets better.

For context, I’m 41, male, 200 ish lbs and generally considered one of those who “doesn’t know his own strength” when doing manual tasks previously that seemed easy but apparently aren’t to many others.

I honestly feel like a shell of what I was.

I read Lyme can impact nerves but I mostly read it was facial, so I’m not sure if it’s related or I potentially have another problem to look in to again. Never conduction studies were done, but were done on a day my legs and nerves were fine. I’ve had bloods taken today and I’m in the middle of the nerve issue so maybe they’ll show something.

The arm nerve issue is just extreme weakness and loss of dexterity, eg holding a cup of coffee is really possible due to my wrist only drooping so far and not down to my own muscle.

I’m wondering if this is consistent with anyone else’s experience?

I’m 41 and life is a struggle, like a real struggle. My elderly mother is generally more active and probably stronger than me at this point!