Anybody else have these symptoms?

[stwig]

Hi All,
I am so frustrated, and TIRED. I have not had a solid night of sleep now in about 3 weeks. Upon going to bed around 9 or 10 PM I feel a little stiff and sore, having the same amount of soreness I have learned to live with having RA.

Within 2-3 hours I am absolutely frozen and filled with pain. I wake up in excruciating pain in nearly every joint of my body, and every muscle feels like I have been hit by a truck. At that point I cannot move a single limb or roll over in bed. I cannot move any voluntary muscles and my joints are frozen in place. Cannot even lift the bed covers off of me. My spouse then has to sit me up, and start moving my arms and legs slowly until they unfreeze. The first few steps are horrendous, then after about 15 minutes I start to loosen up a tiny bit. By about 1 AM I try going to sleep again, only to be frozen solid with pain in 2-3 hours again.

I feel like I am stuck in a terrible night mare. This endless loop of barely sleeping, getting absolutely frozen solid, loosening up, napping for a couple hours, over and over is making me crazy. It all seems so very different from when I was first diagnosed with RA.

I have an apt with Dr. F next week and hopefully he can help me sort this all out.
I’m just exhausted, and wondering if these symptoms sound familiar to anyone else. Is this typical for Lyme?….for Gout?

Starla

[Lizz]

Starla, I’m so sorry about your pain at night. I am always worse at night. Are you takings any NSAIDS or anti-inflams at all? Are you detoxing? (Liver dumps at night) Others will come to your rescue knowing more than me. Feel better soon. Lizz

[stwig]

Hi Lizz,
I take celebrex twice a day, and for detox I use my infarred sauna.

Starla

[Maz]

Starla, I went back through your old posts as I couldn’t remember your past progress on AP, which sounded pretty good until this recent worsening. You mentioned going to see Dr. F. a couple months ago…what were his thoughts on your current symptoms? Did he make any adjustments in your protocol or are you still on mino 100mg MWF?

Flares can and do recur while on AP, but they should be getting fewer and far between, less intense and shorter in duration. This doesn’t sound like this is happening for you. There is an instance in the book where this happened for a woman and Brown gave her a round of IVs. Did Dr. F. suggest this at all?

What are your most recent labs saying? Have you been tested for DILE (drug-induced lupus erythematosis)?

Did you get your IGeneX labs run in the end? You mentioned you were looking into this. Thing with Lyme is that people can get re-infected. Being infected once or never at all when having a rheumatic disease doesn’t preclude future infection after a run-in with a tick. So, even if the doc shrugs this off, I’d personally insist on getting an IGeneX western blot run, just to see if there is anything suspicious for it going on (whether old or new infection(s)).

Untreated coinfections can raise their ugly heads well into treatment. The major player might be being kept at bay, but then other minor league players become major players when the coast is clear or some stressor comes along to weaken immune function further.

Really sorry you’re in so much pain, Starla. My heart goes out to you…it sounds pretty similar to what I went through in the beginning and know how horrendous it can be.

[stwig]

Hi Maz,
At my last Dr. visit in Riverside I was not having this debilitating stiffness at night. At that time I was just having renewed swelling and redness in my fingers and wrists. The doctor thought I had a co-infection, so he said I should take Azithromycin 500mg on Tues and Thursday. Each time I took the Azithromycin, the night rigor and pain got worse and worse. I lowered to dose to 250mg, them stopped taking it all together, as it just seemed to be making me worse each time. Unfortunately even though I have stopped the azithromycin, the pain and frozen body issue has not let up. If anything it continues to get worse.

Both Dr. L and Dr. F were out of the office over the holidays, and just this week Dr F has returned to their practice. My repeated phone calls have resulted in getting my next appointment moved up to next Tuesday. In the mean time I know I am in for another week on no sleep and tons of pain each night.

When I am there next week I plan to ask (actually demand) Lyme testing.

How on earth did you get through it Maz?
Starla

[Maz]

@stwig wrote:

The doctor thought I had a co-infection, so he said I should take Azithromycin 500mg on Tues and Thursday. Each time I took the Azithromycin, the night rigor and pain got worse and worse. I lowered to dose to 250mg, them stopped taking it all together, as it just seemed to be making me worse each time. Unfortunately even though I have stopped the azithromycin, the pain and frozen body issue has not let up. If anything it continues to get worse.

When I am there next week I plan to ask (actually demand) Lyme testing.

Hi Starla,

How on earth did I get through it? Hmm…probably sheer stubborness, but definitely with great difficulty. Seeing my labs improving that first year was the only thing that really kept me going – not to mention the good folk here – and knowing I was on track. This is why regular labs can be quite important…subtle clues can arise from labs that my LLMD picks up on and then we know when it’s time to change things up or not. To a LLMD, herxing is a good thing, as it’s a sign the protocol is working. If labs are worsening, after herxing is over, however, that is a sign that things have plateaued and other things need checking and protocol switched up.

I had a rough time with azithromycin in the beginning, too, and had to use it very low dose, starting at 250mg every 10 days, then every week, then on Tues and Thurs. Now, I can take it full dose at 250mg BID, if needed. It’s pretty broad spectrum, so it can hit quite a bit in one’s pathogen load. Perhaps the fact that things are getting worse in spite of dropping azithromycin is a clue that you were indeed herxing while on it and that it’s actually beneficial? I don’t know…just surmise on my part, Starla.

In the beginning, if this helps, my pain always worsened at night, too, making it very difficult to navigate the stairs just to go up to bed. One thing that pops to mind is that the liver dumps at night and so this is when an excess of toxins might be flooding the body. Have you tried the lemon/olive oil detox drink at night? I also took a tspn of Tri-salts with water and this helped to off-set some of the acidic waste. Drinking lots of water also helps, but this might have you needing to go to the bathroom more frequently and waking hubby to help you get there.

I don’t think Dr. F has IGeneX testing kits in his office…he may, but it might be a good idea to call IGeneX (http://www.IGeneX.com)and ask them to mail you a kit asap for your appt, so you can take it in with you and get him to just sign off on the western blot (test #s 188 & 189 and cost around $200) – the necessary paperwork is included in the kit. IGeneX runs a multiplicity of tests, but most people just start with the basic western blot, as this can provide enough evidence to warrant seeing a LLMD who would treat suspected coinfections as a matter of course. So, it just saves money on the testing this way.

It would be really good if you could get some up to date routine labs run, too, just to see what is going on.

Starla, sending healing wishes your way and please let us know how you get on next week. I’m going to be away for some of next week, but will check in to see what you might have discovered.

[stwig]

Thanks for the encouragement Maz. You are such a wealth of information and always an inspirational, positive person. We are all lucky to have you on this board. I’ll keep you posted on what comes of my appointment next Tuesday.

Thanks again,
Starla

[Author]

Posts