Joint Deterioration, Swelling Causing Anxiety

Can you describe the tingling? Is it constant? How severe/when did it start. Makes me worried about neuropathy, which again could mean an autoimmune issue.

Have you made an appointment w an immunologist? Are there even any good ones near you?

My thought was just an idea...you have had pretty much everything else under the sun looked at, so we have to think outside the box, but I do think it’s worth exploring.

Are you still on the plaquenil?

For whatever reason I’m feeling better on the plaquenil/clarithromycin combo. Ive only been on it 2 weeks and know the plaquenil can sometimes take months to work, so maybe the clarithromycin is hitting something...most likely this SIBO infection of mine, maybe some residual lyme. But Dr K says it’s probably because plaquenil/clarithromycin is a synergistic combo that is known to be highly anti-inflammatory. Just love that guy!

dcd - My thought is as yours - concerned about neuropathy. I've Had some off and on for a long time, but it has become more constant in the last week. On Monday, I am going to make an appointment with an immunologist. I have a visit scheduled with my PCP Monday, so I can get the referral while talking. I have been taking Plaquenil (200 mg) for about two weeks now. With all Lyme tests coming back negative, I am real concerned about autoimmune, as you mentioned.

Clarithromycin is a problem, from all I've read, with kidney disease. There is so much going on/so much to consider, I'm just wearing down mentally and physically. Been at it for years and new things just keep coming up. Astroman's story is amazing to me as he went so long feeling as he did and is doing better now. The constant pain is new for me with Lyme. Never had much of it before.

Astroman - I have not tried that on my back and will definitely look into it. My feet and hands are really starting to become the major issue. Both feet and mainly the the right hand - swelling, red, pain. Back has it's problems also, as it was main concern before. Now the feet and hands. I've had ANA tested about 5-6 times. Highest was 1:160 and that was about a year ago. All 1:40 or simple "negative" since then.

I do notice when my stomach gives me problems, like now, things get worse, especially mental. I mentioned I was reading about Medical Medium and diet. Going to store today to purchase different foods.

I did not know about TNF until you mentioned it, astroman. Thanks. I am making a "test request list" for my PCP I am meeting with online today. The rheumy two weeks, despite pain, migraines, swelling, just said "make an appointment in three months." That was it. I thought, "Did you see the swelling and hear the symptoms just now?"

That's why I try to make a blood test list for my PCP, who understands Lyme and "gets it."

Thanks for the information, dcd. It has been a very crazy few days as I have been through CT scan and MRI. Waiting on results of MRI and, of course, it is now the weekend.

CT scan showed degeneration of some discs in lumbar and compression. For some reason, they did not do a CT of thoracic, which I wanted, because X ray shows two fractures there. And that is where it gets really scary as they are looking into multiple myeloma. Last thing I wanted to hear. That is why they did the MRI. At this point, I'd take autoimmune and deal with it, if I have to. But the other scares hell out of me. And there is a lot of symptoms leaning that way.

I've read Lyme itself can cause bone loss, but my last two Lyme tests have been negative. This has left me totally in space. Trying to deal with this in my mind. Hoping it is as you mentioned, but there are so many markers that lean toward MM. The Sweets Syndrome can be followed years later by MM or Lymphoma. Thought after 9 years and two times through cancer scares it wouldn't be a concern. But the bone thinning and fractures weren't there until the last year. Just don't know and am having trouble sleeping.

Know you are appreciated.

I’m sorry to hear that RW. I will keep you in my thoughts.

Have they taken blood and run a protein electrophoresis?

Hmm, After you mentioned MM it did get me quite nervous, a lot of the symptoms do match. But if albumin and protein are good, combined w your previous testing last year, that’s a good sign. Why didn’t they rerun those lightchains and electropharesis when they mentioned MM?

I should have mentioned how rare it would be for MM to happen. Do not want to make anyone nervous - we all have enough to be concerned about. I have not seen the oncologist and am waiting for MRI before I contact. The fractures were caught by the orthopedist I went to week before last on x ray. I was surprised by them being in thoracic (middle) spine. He ordered the MRI. I have the disc, but no way to read it.

The tech is sending a report to ortho tomorrow, but he is going to be out of town. I will insist on seeing another doctor or getting the report as waiting another week is out of the question. Other part is at thecalcium ER a few days ago, they did a CAT scan but of lumbar but not thoracic. Have no idea why not thoracic. But nothing was mentioned about any cancerous concerns on report or by the doctor. There was major degeneration in a couple of areas, though, and some bone erosion. It is the bone erosion that is of big concern. That is why I'm hoping autoimmune.

White blood count has been low but now crazy low. Been that way for many years now. Sometimes barely normal. The WBC went from 3.60 one week to 4.20 night of ER. RBC at 3.67. Not sure norms on that test. Also, calcium has not been high or even close. High calcium can be another sign. There are good signs, but the damage in back and neck has got doctor concerned, along tingling in hands/feet with the EBV with it.

Just need to know if the MRI is showing anything. I'm on edge and having trouble sleeping. Wish I was better at this.

For a period of time, my WBC was in the 2's. And I had bone pain and a swollen lymph node.

It's all a blur now...but I pretty much self-diagnosed many diseases/conditions...etc.

At one point, I thought I had hyperparathyroid because my calcium was slightly raised for awhile...

What I'm saying...is I kind of know what you're going through and understand the fear/worry that come with testing to rule in or out certain ailments. I'm hoping/praying you find out soon what it is....or at least what it isn't.

Hang in there....

ko7 - That is interesting about MCAS. I have no idea if that would play a part. I guess first thing is to get a verdict on MRI and tests. No doubt viruses can do so many things. There seems to be no way for me to get rid of EBV. I'm wondering if the daily fevers I get are EBV, like I thought, or autoimmune, which a very nice lady who works for the hospital I went to told me about. Her husband has RA, unfortunately, and she said he had daily fevers everyday at 1:30 pm. She said it was always 1:30 until he treated the autoimmune.

And yes, your words about stress and handling it are so true. I used to be someone who handled all kinds of stress well until years of Lyme. Now, and I've mentioned this before, it's like having PTSD.

Girlie - I remember reading about your days of low WBCs and bone pain. Then the mind starts going into all kinds of dark places. I get you. In this case, my mind is not carrying me into unreasonable places like it can. All real concerns so I look for reasons it might not be the worst case scenario. But you and k07s words are kind and help. There are so many in same place.

Cancer has always been my biggest fear since I had Sweets Syndrome in late 2011.

Hoping all is well RW.

dcd and k07 - I appreciate your concerns. As I have said about others, you are friends without faces. But friends, nonetheless.

First, I have grown increasingly tired - literally tired physically and mentally, tired of doctors, tired of unknown and very tired of the health system. It runs at turtle pace, even when some of the worst possibilities are being considered and tested. Haven't wanted to put that on anyone and simply didn't go online because I just wear others and myself out.

Upadataes include - MRI was done last week of thoracic and cervical spine. I still have not met with ortho about it and plan on changing orthopedics because the one I have seen gives so little detail. He also said I have two fractures in my thoracic spine, but MRI report does not mention any fracture. It does indicate abnormal signals in different areas and recommended follow up with full body bone scan. Not sure what the abnormal signals indicate and report did mentions a number of things from benign to not benign. There is no mention of lyctic lesions, which are seen in MM. But with an MRI, I don't know if it is seen as an abnormal signal instead.

The blood tests done a few days ago show white blood count right at low normal, but low RBC, hemo, hemat. Platelets were at 160 and had been at 118. But they bounce around day by day, I think. Also, absolute lymphocytes are real low at .76 with 1.50 being low normal. Irony is my kidney numbers have been better the last four tests, with last one showing a 60 on GFR, which is best in years. 55 and 58 before that.

Oncologist today ordered full body scan, all kinds of blood tests. It's just more drag time waiting and stressing. I try not to but I'm so tired and back hurts so bad, it's hard not to. She said we will meet in two weeks and I thought "You gotta be shi----." She scheduled the bone scan for a week from tomorrow. They have no clue about the mental aspect of all this, it seems.

Go to bed early as I do not sleep as much because of excessive pain in entire spine and I have been peeing more. Can't figure out peeing more as kidneys are better. That tells me maybe Lyme/co are still in play, despite

I know some of the fatigue and pain I feel is because of depression/anxiety, but some is not. In all the years of dealing with this crap, this is a new one, feeling wise. So many on this site have been there, so I'm not whining about it. Just getting worn with it. Energy as at all-time low.

It is beyond me how doctors can't see the urgency behind all this. If it is MM or something close, everyday makes a difference. Maybe it's not, but why take that chance? They could make it happen but don't.

Irony is kidneys have shown better numbers, with last GFR at 60. Hasn't been that high in years. 55 and 58 before that, which is better. But I go to bed real early because back pain and frequent urination make it harder to sleep. That tells me the frequent urination is not being caused by kidneys. Maybe Lye/cos are in play, despite all negative tests.

Finally, has anyone had low absolute lymphocytes? And has anyone heard of haptoglobin? My hapto is very low, which can be caused by autoimmune (hematolyc anemia). It can also be caused by some other stuff I will not mention, but MM is not one of them.

Please update me on where you are at with symptoms. I did not mean this (staying offline) to be non-caring about others. It was actually meant to keep from worrying others. But God and I have had a lot of talks.

You are all appreciated.

ko7 - You are a good person and appreciated. Are you feeling any better?

Thanks for the sleep suggestions. I do use clonopin, abd if I took higher doses I know it would help. But it is a bear to wean off of. A friend brought over some cannibis "candy" for me to try. I had never, ever smoked pot or taken anything with cannibis in it during my lifetime. I took half of one and spent hours feeling odd, not being able to complete a thought, feeling like I was on a boat, etc... It was just a weird experience.

What I have found to work is to take half a muscle relaxer before I go to bed. I only take it when absolutely needed. It's funny Benadryl doesn't always work for you but the nasal spray does. I've never had much luck with natural sleep aids either.

Glad you have times where you only go twice a night. Right now, my nervous system is so ramped up with anxiety waiting to have tests and waiting on results, the edge is with me awake and asleep. Had many blood tests done yesterday and will have a full body bone scan Friday. It might as well be a month from now as my mind always wants answers NOW.

We're always told the sooner you catch something, the better your chances of treating, yet the medical world drags, as I've mentioned so many times before. Do you stress waiting for results? In my former life, pre-Lyme, I never worried about test results. As Eric Carmen once sang "those days are gone."