Most Everything Getting Worse; Looking for Help, Hope, New LLMD

Have delayed posting this as I had hoped things would improve. I've always been a "never give up" type person, but time and happenings are making that a challenge. I feel like a wimp even writing that.

There is a loneliness to Lyme.

In last 10 days, so much has gotten worse - like as bad as it has been in 6 years. Been lost on this several times before, but now am at wits end. Morning anxiety is worse than it has ever been, matched by depression. I'm sorry I have only responded to a few of your posts in that time, but my mind has not been positive.

Am very concerned about autoimmune disease as for first time knuckles at base of fingers (where fingers meet hand) have been swollen and painful. Mainly on right hand, but a little on left also. Low back pain has also gotten worse. Pain in front right shoulder much worse. In the past, arthritis like conditions have not been bad, but this is getting worse and worse. Autoimmune tests show negative, but there are some antibodies showing but under positive markers. However, ESR and CRP are very low in every test.

I asked my doctor a month ago to do blood tests through MDL. I have read about them after a suggestion on this forum. The price is much less than IGENEX or Armin, and I don't know if either of those are any better. I even had MDL send me a packet for blood draw, which I took to my doctor. Last week the doctor's office said they had not heard back from MDL with questions, so I called MDL and someone there sent blood draw instructions to my doctor. Still waiting for doctor to draw blood and send tests.

Also trying to find a LLMD to go to that might provide new insight. I'm also ready to stop doing all this at that point.

Just trying to determine if Lyme is still active or co-infections. Never been this tired and weary with it all before. Been close before, but never to here.

When things like this happen, my mind goes south. Trying to determine what is causing what frustrates. Is it EBV causing autoimmune? Cannot get EBV IgM down for last 18 months now. Doesn't seem possible. Is it Lyme or co-infections getting worse? Have had too many years of going through this. Looked back in journals from all those years and realized how much we all go through as the years go by.

Any suggestions on LLMD or thoughts would be appreciated. Being here alone causes mind to go everywhere. I apologize for the down tone of this. Have no one else to go to with it.

Borrelio b - Thank you for the response. I will look into each of the items you listed to see if I can take them with kidney situation am dealing with.

All this has really gotten in my head recently. Frustration comes from not knowing what could be causing what. That's why I would like to get the tests again for Lyme and co-infections. You are right about stepping away from it for a while. When I get like this, it's hard to get things out of my mind. Don't know if you or others are the same. It's counter productive, but my head won't let go, at times.

With EBV in the picture, I worry about autoimmune. It just adds to the worry.

Glad to see you have times of symptom free. Does that hold long for you? I'd do all of Buhner's protocol but there are certain herbs in it that can cause more problems with kidneys. My hands stay freezing a lot and show Raynaud's type symptoms. Also seem to have problems being in the sun. But there are so many Lyme type symptoms such as losing body fat, numbness in nose and teeth, etc....

I understand about the cost. This is not a cheap disease. But I'm at a point where living like this is not an option anymore. That's why I'll spend what is needed if I can find a good LLMD who looks at the whole picture.

Again, you are appreciated. Being here all day without talking to anyone cranks up the mind. If I could exercise more, that would relieve the stress as I always used physical activity to release anxiety/depression.

Anyone with thoughts about chances of this being caused by Lyme rather than autoimmune would be appreciated.

“ a real bummer because I used to be an athlete too.“

I don’t know how old you are - not asking... but being older - ie over 40 makes it more difficult to get the muscle back.

I had been in great shape prior to lyme symptoms.. running , tennis, bike riding, swimming at our lake we’re my sports. (Not competitively - just enjoyed it)
I don’t know if I’ll ever run again - or play tennis with the upper back issues lyme has caused.
Those two were the ones I enjoyed the most.

I know I should just be grateful that I’ve come this far - but sometimes it’s depressing what this disease and lack of timely diagnosis has done to my life.

MR is taking tele visits. It seems like a pretty good option ...

i like SP also - you'll have to check but I believe they are only doing tele visits with Ct residents now and maybe NY. But they are scheduling other states still but a couple months out. I wonder if this is due to prescribing/ insurance.

I believe MR can prescribe/ test as long as you opt for the full visit not the consultation.

Also I am in similar boat and posted a long winded blurry post just now. Probably won't help but know you arent alone.

Also I had knuckle/ joint issues years ago many years ago ... it was an early symptom of mine.

Sorry your feeling so lousy. When I had MDL labs done it was a self contained packet that the only thing the doctor did was sign and I took it to a hospital and they did everything. The hospital mailed it. I'd suggest with all bloodwork to go Monday morning so it doesn't sit over a weekend.

Make sure you include your insurance information with the order all they do is reject it and send you a bill. When I used them my llmd said most insurances will pay for using them. My insurance gave me the negotiated rate which was a huge savings.

Girlie "it’s depressing what this disease and lack of timely diagnosis has done to my life"...

Yes, it is. I feel as though I've aged more than I should have because of this. My memory cuts through the fog every now and again, I'm thankful for that. I have moments where I sort of remember how much energy I had, only now it is usually more of a manic episode when my supplements hit all the right cylinders. I feel like that park forest ranger from "under our skin" who said he's lost the ability to multi-task as he gets lost driving in a neighborhood. I always wish I could get diagnosis/treatment or find a better way to manage the symptoms to where I could just feel good again, and maybe not obsess on it, never mind the random reminders with ongoing persistent neuro- problems. Someone who is clearly suffering from tick (and other vector) borne illness still has that doubt I've seen (a recent thread I saw) to dare say this is a cult of hypochondriacs, that's insult to injury, and what with being dismissed and so forth over politics, propagandized out of existence, all to save what, money instead of people's health.

And running wild, I get how you feel, I get down too. It's a tough time for everybody, well mostly, maybe rich hermits are loving this time now.

Don't want to give the impression that I am utterly completely hopeless, though I get near that mood out of frustration, disbelief at how this is not seeming like it's ever going to be recognized as a thing like COVID19, as maybe it doesn't virulently kill you via your lungs quickly, yep not dramatic enough, just stealthily debilitating enough to make you look foolish lol

Tick born disease... yeaaah just seizures, neuro motor problems, unbelievable wildly-different individual presentations spanning 100 plus diseases, that include all the old favorites, joint pain, myalgias, cracky neck, unusual depression, you all know those fun hits.

I digress, I'm feeling and doing okay at times, 80-90% for a day, maybe two, a few days of eating clean, but it rapidly changes to 30-70% psychologically or physically too if I over do it, or stress. My symptom wheel keeps spinning...

however I must leave a positive note I'm thankful that I have a dry bed to sleep in and a roof over my head and 1st world creature comforts, and some of my health returning.

They could xray your hands - my rheumy did my feet because of suspected swelling. I have positive ana (speckled) and low positive RF. However, she does not think I have RA. Not sure why exactly. I have erosion of my left hip joint and arthritis in low back. All at 41! Low back pain/stiff since early 30’s and hips started around 38. I had acute bart symptoms at age 5 (lymph node swelling in leg that I had surgery on) with no known cause. A few months later my mom had the exact same thing in her arm pit. We had lots of cats and a flea issue in our house. My mom has gone on to have both knees & hip replaced with major joint destruction but no positive ANA. We both have some heart issues too. She can barely function without prescription anti-inflammatory and in her early 60’s. Makes you wonder? I’m thinking of going back to bart treatment.

k07 - Thanks for your information and response. Sorry to see about your problems with joints. Has anyone done an MRI or ultrasound to check about ra? You think your mom also has Lyme or coinfections?

Haven't had x rays yet. Trying to make an appointment with the rheumotologist I see to try and get that or ultrasound. X rays may not catch early ra, so hoping to get the ultrasound. I've only had mildly positive ANA once - about a year ago. Since then all autoimmune tests have been negative. I've had a lot of them, including the Avise test, which is supposed to be much more reliable for autoimmune. But I do have antibodies for rheumatoid arthritis, but it was only half of what is needed to be positive. I don't know if you should have any if all is good, but the rhumey in February said I don't have autoimmune. But knuckles have swollen on one hand after pressure washing about 10 days ago and have stayed swollen and painful. Back has hurt for 18 months. Shoulders off and on.

Were you satisfied with MDL? Trying to see what people think of it and trying to get my doctor to get the tests done for my sanity. And yes - will do tests for co-infections. Did you have other positives along with Bart?

MDL reads their blot paper electronically and gives you a copy of it. Your not left to the will of someone holding the paper up to the light. They are also accredited/licensed and to their tests according to CDC standards thats why they take insurance.

When I got tested through a larger regional lab I had one positive band on my western blot. 4 weeks later I had 9 positive bands through MDL. Whether I have active lyme or not who knows but at least it confirmed I had exposure.

I’m suspicious that the cause is long term bart. I did have mri of back. It shows arthritis and erosion in hip and rheumy said spondyloarthritis. I didn’t know they could rule in or out RA via mri? Xrays of feet didn’t show anything.

I am getting a second opinion from another rheumy soon. She appears to be more open-minded and I’d like to ask her about bartonella. I’d also like to consider plaquenil again. I just don’t want to continue on the path of joint destruction like my mom. The current rheumy told me plaquenil wouldn’t work and wanted me to go on humira. I’ve been taking cbd capsules (50 mg a day) with some pain relief.

I’ve not taken Plaquenil but Dr H uses it to treat the infections. I’m not sure if it’s only for Babesia or also lyme.

I did take plaquenil for a bit with other antibiotics. Back when I took it joint pain wasn’t as much of an issue - and I didn’t really know at that time that it could help with it. Maybe that’s why my joint pain wasn’t so bad?

Yes, I’m trying to avoid humira. Since plaquenil is used with lyme treatment I thought it couldn’t hurt. I’ve also heard it’s not so much of an immune suppressant but more of a modulator.