More questions…RA symptoms or abx

[2011Rio]

Hi everyone,

I was just wondering if anyone knows if it is RA that causes some symptoms that I have had. I have had my glands under my jaw swell, have had a clammy forehead with hot flashes and at times it has been hard to breath, kinda like an asthma issue with my back muscles between the shoulder blades tight. (or maybe that was during herxing…lol)?? Trying not to let it all run together. My glands, clammy forehead and hot flashes, I know were before I ever started any antibiotic.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[BG]

Your symptoms are more like those that accompany an infection.

Barb

[2011Rio]

Hi Barb,

Well, I have questioned this from the beginning. One reason why I thought for sure that my issues were from Lyme D.
My son was diagnosed with it and I thought there was a good chance I had it. I was tested but not by ignex (forgot the spelling), test came back negative. But can’t those same symptoms be from herxing? Oh, I forgot at times I would be pale.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[BG]

The symptoms you describe could be caused by Lyme disease but not likely. Human granulocytic ehrlichiosis (HGE), now called human granulolytic anaplasmosis, another tick-borne infection and a frequent co-infection of Lyme, can cause those symptoms but so can strep and a host of other infections. I think you need to see a doctor ASAP and have all the conventional tests run plus a test for HGE/HGA to try to determine a cause.

In my opinion, it’s not herxing.

Barb

[BG]

Babesiosis is another possibility.

Barb

[2011Rio]

Thank you, Barb,

I’m gonna look into that. This whole thing started very weird. I was completely exhausted for about 2 1/2 mo., during which time I thought I would pass out almost everyday, but only in the mornings. The fatigue was extreme!! I was also working at the time and I could hardly function cognitively, I couldn’t remember things and I couldn’t process information very well at all. That started improving and then maybe a month later the joints starting hurting..very very painful. Anyhow, that how it started. I’ll keep trying to look into this.

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

Forgot to mention, that they did test for strep and for mono. Both tests were negative. A few other tests were ran also, I’ll have to look them up again.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[BG]

Tricia,

Now that you have told me how it all started, I strongly suspect Human Granulocytic Ehrlichiosis/Anaplasmosis and or Lyme. I was diagnosed with HGE/HGA via a LabCorp test for IgG and IgM antibodies, ordered by an infectious disease doc but any physician can order it or you may be able to request it via a prepaid lab online such as Walk In Lab, then go to a LabCorp site with your requisition form. If you go through a prepaid lab online and LabCorp, I strongly recommend the HNK1(CD57) Panel as well. It will show whether a subset of your natural killer cells are depleted which may point to chronic Lyme disease. You can then show the results, if low, to your physician which will then prompt them to look for a cause for a NK cell deficiency. That is how I got more tests and a diagnosis.

Best wishes,

Barb

[2011Rio]

Barb,

Thank you for the input. I’m going to bring this up with my doc and see if he will get this stuff ordered. It sure won’t hurt to look into it. I’ll try to remember to let you know what becomes of it.

So you have never heard of anyone’s RA starting with those kinds of symptoms? Also, I did not test pos. for an RA Factor, but did test very high for CRP.

Have a blessed day!
Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[2011Rio]

Barb,

I just wanted to throw this out there. When I was tested for Lyme, I test pos. for one band out of range. I don’t know much about the testing so I don’t know if that is significant.

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Maz]

@2011Rio wrote:

I was just wondering if anyone knows if it is RA that causes some symptoms that I have had. I have had my glands under my jaw swell, have had a clammy forehead with hot flashes and at times it has been hard to breath, kinda like an asthma issue with my back muscles between the shoulder blades tight. (or maybe that was during herxing…lol)?? Trying not to let it all run together. My glands, clammy forehead and hot flashes, I know were before I ever started any antibiotic.

Hi Rio,

In the initial phase of RA, swollen glands and mild fever may be present (indicative of triggering infection). You’ll find these types of symptoms described in early RA in much of the conventional literature. In a lot of cases, patients with these types of symptoms go to their doctor who suspects infection and puts them on an abx and it’s often how a good number discover that abx seem to benefit their emerging arthritis, too, though the doctor will say the benefits to their arthritis has nothing to do with the abx. 🙄 Air hunger and heavy sweats aren’t common early signs of RA.

These symptoms were very similar to how I started with RA. It can be very difficult to discern what infection can cause these types of infections as there are so many that can present in this way, including good old mycoplasma pneumoniae or chlamydia pneumoniae (walking pneumonia-type infections). One of the common tickborne infections, babesiosis also classically presents with stiff neck muscles, swollen glands, air hunger, costochondritis-like pain, drenching day and night sweats, fever, etc. Here is a link to a description of this infection, though it’s worth bearing in mind that symptoms can range from asymptomatic to full blown with babesiosis and severity really depends on the state of a person’s immune system.

http://www.aafp.org/afp/2001/0515/p1969.html

In my case, my RA began with two bulls-eye rashes and stiff neck (which is what tipped me off to Lyme, though not everyone sees a rash). These symptoms progressed over the weeks, but by the time I saw my LLMD a few months later, I also had highly elevated liver enzymes (alkaline phosphatase) and white blood cell count. As described in the article, these are also clinical signs of babesiosis, and I also had a history of erratic, irregular heartbeats (which was tested and nothing showed up on EKG, holter monitor or ultrasound).

As BG mentioned, it’s worth being aware that there can be a lot of overlap in symptoms with tickborne diseases. E.g.In Colorado, Colorado Tick Fever, a virus, is prevalent and wouldn’t show up on a Lyme test. Ticks are nature’s dirty needles and they can pass a number of infections which can really blur the diagnostic picture.

http://en.wikipedia.org/wiki/Colorado_tick_fever

Aside from infectious diseases, imbalanced hormones can also cause some of these issues…e.g. thyroid, ovarian and adrenals. Have you had a hormone evaluation done recently?

Rio, is your son seeing a Lyme Literate MD? If so, would this LLMD do a complete work-up on you, as well? Because “Lyme” is a multi-systemic problem, these docs do their best to do a complete work-up on patients to look at all angles. The benefits of this type of work-up is fantastic, because while trying to rule out other serious causes (like lymphoma or liver disease), they will look at infectious causes, hormones, diet, etc. to narrow down the specific needs of each patient.

As these symptoms were present before you started abx, then you can pretty much put them down to whatever infections have triggered your RA, as long as other potential causes have been ruled out. What do your present labs look like?

[BG]

So you have never heard of anyone’s RA starting with those kinds of symptoms? Also, I did not test pos. for an RA Factor, but did test very high for CRP.

The short answer is no. Swollen lymph nodes alone, yes, but combined with hot flashes, clammy and pale skin, no. All of those symptoms combined point to an infection.

A high CRP = acute inflammation whereas a high ESR = chronic inflammation. With RA or other rheumatic diseases, you may have a high CRP and a high ESR or just a high ESR. A high CRP alone usually means an infection of some kind.

I don’t know much about the Lyme bands either. Also, we would need to know which bands tested positive and or inconclusive to offer an opinion about the results other than to say it definitely indicates you have an infection with something.

Barb

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