Heart Issues? Humira or ReA? Or What?

[Calida]

worldofme wrote:

Thanks. What concerns me is the hear racing. Do you get that with air hunger feeling?

The air hunger theory by your doc really make sense.

My rehumi said I don’t have PH nor pneumonia. Said my lungs sounds good. Just get eco done.

He was more concern about drug induce lupus by humIra or Diovan hctz.. any thoughts?

I definitely noticed an increase in my heart rate during the bouts of air hunger. I can’t remember what my BP was, or even if I took my blood pressure at the time, but I have had spikes of BP.

Drug-induced lupus may be a clinical diagnosis, I’m not sure, but antibodies to single strand DNA (ss-DNA) and histone are labs that can confirm DILE. Perhaps your doctor can run another set of antibody labs? My rheumatologist was aware, early in the diagnosis process, that my ANA was negative so she checked off additional antibodies to be tested and, in spite of the negative ANA, I had positive scl-70 and cardiolipin antibodies. These difficult cases are so strange and sometimes require a deviation from the normal testing procedures.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Calida]

Maz wrote:

Calida, noted you’re also on artemisinin. Did you test positive for babesiosis with your Lyme? Babesiosis is renowned for air hunger and some folks also get costochondritis and joint pain, amongst other possible symptoms ranging from bladder pain, anxiety, anemia, sweats, palps, etc. :

It’s the strangest, thing, Maz. I think Dr.M. suspects Babesia but the latest labs, drawn about 2 weeks ago, were negative. This was the third co-infection labs drawn in 2 years, all negative including mycoplasma.

I’ve been off of Artemisinin since Spring 2015 but recently returned to a lighter pulsed dosing, 7 days once a month. It may be helping, too early to tell.

I started a preemptive strike against dementia in 2008, monitoring my hormones before any signs of menopause or autoimmune disease, and have used bioidentical supplementation since. ZRT labs show its working but Dr. M. just increased the progesterone slightly to help what I thought were hot flashes. That part of the Suzy Cohen article rang true.

I have been so blessed in that I have not had a single headache since diagnosis in 2013. I have a history of migraines and have been terrified they may return as that would have broken my ability to keep sane, especially with the difficult cognizance problems. I mentally lost November of 2014 to the Spring of 2015, at times unable to comprehend simple verbal questions or form an answer. A short email took literally 8 hours to compose, I couldn’t focus or find the vocabulary to express my thoughts. That problem has resurfaced once or twice since, lasting weeks, but wasn’t as severe as that horrible winter. I found the strangest thing about that time to be apathy. I was my mother in her early stage of dementia. I should have been frightened but I felt absolutely nothing, I flatlined emotionally. Once the fog lifted, my normal emotions returned.

Because I started mino in November 2014 (I had been responding beautifully to zith), Dr. M. felt sure that my brain problems were due to minocycline’s efficacy in that area and the subsequent die-off and inflammation. That makes sense to me, especially after reading about Drs. MacDonald and Miklossy’s research re dementia and Lyme. I do find comfort in believing that this diagnosis may have saved me from my mother’s fate.

This roller-coaster ride has been hell, no doubt about it, and I’m not completely out of the woods yet. I had a complex diagnosis and pathogen explosion but I am now in safe territory, free from the fear that this disease will kill me or steal quality of life. Expressing my thoughts is still a bit difficult, as anyone can see from my lengthy responses 😉 but it sure beats the alternative.

I trust Dr. M. without reservation and I’m touched by his determination to find and treat that last, small piece of the puzzle. Perhaps Dapsone might help, as Dr. H. seems to be using a triple ab approach successfully, but if I have to live the rest of my life the way I am now, that’s fine because it’s so much better than I dreamed possible in 2013, pre AP.

Best always,

Kelly

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Maz]

Calida, you’ve had a rough journey, as have many here, but a very inspiring one and it’s great that you can find time to share. Don’t worry about the length of your posts – many people enjoy reading them and the finer details can be life altering for someone, especially if they relate to a piece of a very complex puzzle.

With all this talk of air hunger, it just brought babesiosis to mind, especially in light of the fact that it’s responsive to various anti-protozoal meds, like flagyl, tinidazole, mepron, alinia, zith, etc., including herbals, like artemisinin. It’s a very tricky bug, because as you know it hijacks red blood cells and can require multiple rounds to beat it back due to the length of life cycle of RBCs and this protozoan piroplasm. I find it interesting that Krause, etal., discovered a correlation between babesiosis (one of those chicken or egg situations) and lymphoma in asplenic and immune-compromised patients. This is one of the potential complications of rheumatic disease and one of the warnings on the biologics. I gather that the absence of evidence is not evidence of absence with babesiosis…in it’s chronic form, people have to fight this for donkey’s years and testing is pretty awful. PCR is great, if positive, as it’s so sensitive, but worthless if the bug is not in the small sample used for the test. It also requires that a person be off abx for a good month for any chance of an accurate result. Do you know what type of test was used, Calida?

In any case, regardless of the bug involved, the proof of the pudding is always in the eating and patient response is everything in medicine, because in spite of pre-set standards of care, we are each individuals with unique responses to treatments and, as a very astute, amazing physician once said to me, “The book has not been closed on any disease.” “Whatever works” (bearing in mind risk/benefit), should be what really matters in patient care, if the patient’s best interests are truly at the fore of modern medicine.

[richie]

HI Calida —I have always said that generally I can pick who gets better and who muddles along –I am a strong believer in attitude being at least 50% of the battle –and you sure got the right attitude –IMO thats why you’re a winner !!!!!!!!!!!!!!!

[Calida]

Maz wrote:

It’s a very tricky bug, because as you know it hijacks red blood cells and can require multiple rounds to beat it back due to the length of life cycle of this protozoan piroplasm… PCR is great, if positive, as it’s so sensitive, but worthless if the bug is not in the small sample used for the test. It also requires that a person be off abx for a good month for any chance of an accurate result. Do you know what type of test was used, Calida?

Wow, no Maz, I didn’t realize it hijacks red blood cells! That’s amazing. I’m not sure if you know this but Ed Harris is in the midst of researching RBC aggregation in scleroderma. I’ve been reading up on RBCs for 2 reasons; one, the scl-70/cardiolipin abs that popped up in my labs and, two, I’m fascinated by Plaquenil’s effect on autoimmune disease. I know malaria is parasitic to RBCs so I felt that Plaquenil might be taking care of an RBC parasite. In my case, that would be Artemisinin, not Plaquenil.

I have true scleroderma, the whole package in terms of abs and symptoms, and RBC aggregation in scleroderma leads to vascular and organ damage. Babesia makes perfect sense as a possible candidate for triggering scleroderma symptoms or a form of sclero itself. The sclero skin issues makes me think another bug may be at play, too, perhaps mycoplasma. But the amazing thing about the RBC compromise is that it includes excess fibrinogen in any disease model that exists today and, as you know, fibrosis leads to life-threatening complications for sclero patients.

The lab results specify IFA testing for Babesia Duncani (WA 1 IGG AB, IFA) but the Babesia Microti IgG, IgM testing doesn’t say IFA but I doubt it was PCR. I was first tested for coinfections at my first visit to Dr. M., before I started antibiotics but 8 months after I started 5mg prednisone and LDN. Those tests were negative.

Now I can see why Dr. M. retests for coinfections, especially Babesia. There’s no way on God’s green earth I’m going off antibiotics for one month, and I know you weren’t suggesting that, but it would be nice to have that little bugger smile for the camera just once.

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Calida]

Richie, you’ll never know how much that means to me, thank you so much! I’ve had some dark days but your journey made me a believer and I held on to that for dear life!

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[ALTB937]

Hello Everyone! Would love to chime in and share any info that I can; “air hunger” and this feeling has hit me many times, but this is subsiding for me and is mostly non-existent now with Babesia treatment; It was scary at many times and was often accompanied by chest wall spasms that were so bad and painful that they sent me to the ER once; PFT is fine, lung CT is beautiful, echo and heart monitor were perfect, and no more high D-dimer which would show clotting. Even though I tested negative for Babesia on igenex (CDC positive for lyme with both Igenex and the standard CDC western blot and antibody test), I was told by my Dr. C that the co-infection test from Igenex has about a 50% chance of missing it. And yes, it does hijack red blood cells I have heard, for I did have DIC blood coagulation when I was hospitalized before AP and before I knew that I had lyme, hence why my Doctors are treating me for Babesia even without the bloodwork evidence. Zithromax I noticed really helped combat this air hunger, and it did return when I went off Zithromax, but, I am now on Malarone for Babesia and have not had a bout of it since being on Malarone. I even started light jogging and attempting cardio again! Also, with these infections and autoimmune disorders, dysautonomia and POTS is common I have found when I was diagnosed with dysautonomia along with many other lyme patients, and this autonomic nervous system dysfunction can cause a number of weird breathing and heart palpitation things. Maybe something to suggest for your doctor to look into? I hope this helps! Below is a link to just a simple medical website which explains Babesia and how it can cause blood coagulation like DIC, skin symptoms, breathing, and I have heard my LLMD along with other LLMDs on forums say that babesia can cause the skin to feel “thick and sticky”. I find it interesting on the link below that babesia is treated with clindamycin and Zithromax, which seems to be a common Scleroderma AP approach, along with the Minocin. I am still learning this all myself as well, have been on AP for 7 months for positive, late neurological Lyme and the beginnings of a Scleroderma onset from it. Thankful to be about 50-60% better on good days and have my shot at life back, but have a ways to go! Combatted the left side facial droop (full left side body droop basically), and no more seizures, so hopefully the neurological part is subsiding!
These “air hunger” attacks are scary though, I hope you find some relief. When none of my workups were showing up with a breathing, heart, or O2 problem, I would just ride them out with some meditation and try to get my nervous system back in control! Maybe try some Valerian or Magnesium, or both? My nervous system is way overactive, and they had me on benzos and antiepileptics daily when I had seizures before they knew Lyme was the culprit, I have thankfully and safely weaned off both of those meds, but I require high doses of things like Valerian and Magnesium daily to keep my overactive self in check! 🙂

http://dermnetnz.org/arthropods/babesiosis.html

[worldofme]

I agree with you regarding the automatic nervous system dysfunction. All of sudden my shortness of breath just went away when I stopped Humira? Shame because this drug was helping with spine pain.

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