doxy

[alex]

I have an undiagnosed autoimmune disease (or so I think) the 10+ docs I’ve seen during the past 2 years have proven useless.
I would like to start doxy and I’d appreciate any guidance any of you could provide me with.

A bit of background sorry if this is going to be a bit long.

39 y.o female, healthy as a horse until 2 1/2 years ago when I started dealing with episodes of debilitating tachycardia (my personal official record was a heart rate of 220 bpm). Then came the chest pain, then all sort of weird symptoms that made no sense to any doctor, and 6 mo later I endedup being diagnosed with dysautonomia (postural tachycardia to be more specific)

My ANA has been consistently positive, and to the best of my knowledge it has a homogeneous pattern. I have a negative ENA pannel but according to some of my labs my RNP-A is slightly elevated (last time tested it was 2.5, normal is lower than 1) but my RNP is negative. I tried finding some info on RNP-A specifically but I couldn’t. I know that a positive RNP would indicate mixed connective tissue disease – MCTD. Also, my inflammatory markers specifically CRP and ESR have always been low.

Symptoms wise – I deal with out of the blue episodes of tachycardia (sometimes my BP is slightly elevated as well but I am not considered hypertensive), chest pain (cardiac causes of this have been ruled out by extensive testing) and more recently – generalized body pain. Everything hurts from head to toes – including my face and my scalp – I had doctors who scoffed at me when I mentioned the pain in my face or in my earlobes). Also, at times I feel as if my whole body is burning inside and out, I have episodes of pins and needles mostly in my hands, arms and lower legs. On top of these, I have times when the muscles in my scalp, neck, upper chest and arms feel acidic (for a lack of a better description). Not to mention a squeezing feeling in my ribcage that makes breathing a chore. All these symptoms come and go as they please following no patterns whatsoever.

I am currently taking vit D, magnesium, turmeric supplements and tylenol # 3 for pain as well as propranolol as needed for the tachycardia.

I am currently looking at doxy (that I’ve been able to get after much begging and pleading) since during the summer I had an infected tooth that required 2 weeks of amoxycillin. During those 2 weeks I actually felt so much better, so I’m hoping and praying that a longer course of abx will help and point my drs in the right direction.

The other med I’m interesting in trying is low dose naltrexone (I read a lot about it and needless to say I am impressed by the testimonials).

Looking forward to hearing from you.

Alex

[JohnnyMax]

I am not a doctor or anything health care related, but doubtful from what you state does an autoimmune issue seem to be an issue. Have you actually been examined by a rheumatologist? If not, definitely do. Another specialist you may want to consider is an Infectious Disease doctor, they can find issues due to bacteria, virus, fungus, and especially Lyme, practically anything, could well be worth your time.

As a test, consider dropping the Vitamin D for a while, btw, how much were you taking? Some individuals may have issues with Vitamin D that causes health problems, so never know. Also, how much Magnesium are you taking?

Have you had a full hormone panel done? Anything outside of parameters. Almost everyone who has an autoimmune issue will tend to have low DHEA, what were your numbers?

I would not get involved with the antibiotics just yet until you have some type of clear evidence that it is warranted, as you may create additional issues.

John

[BG]

Alex,

I agree with John in part but I also disagree for the following reasons:

1) If you have an infection that’s causing your symptoms, the infection needs to be properly identified if possible so that you can receive the proper treatment. Doxy may not be the proper treatment. That is to say, the infection you have may not be treatable by doxy or may be resistant to doxy. Also, if you are currently taking antibiotics, identifying the infection(s) causing your symptoms may become more difficult or impossible.

2) If your symptoms are caused by an infection that responds to doxy, given the severity of your heart symptoms, a herxheimer reaction to doxycycline treatment could become life threatening. One needs to be aware of this and closely monitored by a physician or someone else who is prepared to assist you if this develops. Your symptoms are very similar to what mine were when I started doxy. I had an intense herxheimer reaction resulting in a heart attack-like episode (it may have been a heart attack but no medical professional has chosen to tell me whether it was or it wasn’t) which I lived through but which could have killed me. The reaction proved I had an infection responsive to doxy which affected my heart though, and it alleviated my heart symptoms to the extent that I no longer needed a pacemaker or an implantable loop recorder which I was being referred for at that time because of a previous and far more serious heart attack, profound bradycardia and high risk of sudden cardiac arrest. It was this incident plus improvement in my lymphocyte count and kidney function while on doxy that finally got my physicians to acknowledge I had an infection.

More later,

Barb

[jims]

Hello Alex. I am sorry to hear you are having so many problems. I have been on this trail awhile now, but not near as long as some of the volunteers of this site. Weekends are slim, I expect one or more of them will chime in. This site is dedicated to the use of minocycline and related abx in the treatment of rheumatic diseases.Have you read Dr. Browns book? There is a video available on this site. Have you been tested for lyme disease? In my opinion almost all of us are probably positive for lyme.( I know that sounds odd.) The only difference is how each of us as unique organisms deal with it. I have an enlarged heart and many swollen joints, but have never had a totally positive lyme test. I have decided its not really important to have the Igenix test. Just me. My symptoms and many other considerations are enough for me. (50 plus tick bites.) One key I think is to find a doctor that listens. I mean really listens and views you as a partner in your journey. You seem to have a good handle on the lab results, although in my beginning i thought that paramount, now not so much. I chased doctors and diagnosis all over the country. I have been on many medications as well. I can say that the antibiotics discussed here are fairly low key compared to some of the stuff i have been on. I am still looking for answers as well. You have found a good resource here at the roadback. jims

[lynnie_sydney]

Hi Alex
The kind of migrating and changing symptoms you describe certainly seem to me to indicate that a Lyme test is certainly in order. (by Igenex if in the U.S. to make the results useful). Most conventional docs are confounded by weird and seemingly unrelated symptoms that can be indicative of Lyme and co-infections. You might also go and see a well versed Lyme Literate Doctor (LLMD) who will treat you based on clinical symptoms, tests or no. You can obtain a list of LLMD’s on request.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[alex]

Thank you everyone for getting back to me.

A few extra details that will hopefully answer your questions and allow you to understand my situation somewhat better:

– I’m in Canada, and despite my efforts to locate a LLMD in my province (Ontario) I couldn’t find one 🙁

– I did have an ELISA Lyme blood test 2 years ago because all my problems started 2-3 weeks after several fishing trips in the area. The test came back negative and none of the doctors I’ve seen since is willing to even look at Lyme as a possibility…nor are they willing to order another Lyme test. With this in mind, I have definitely considered Lyme as a possibility (even if I do not recall a tick bite or the typical bull’s eye rash) but I am unable to pursue this any further at the moment

– I have not been examined by a rheumatologist or by an infectious disease specialist, but I did see an extremely good internal medicine specialist who is quite unable to figure me out (this is a real life Dr House I’m talking about 😉 just one with excellent bedside manners)

– My hormones have been checked – thyroid, adrenals, pituitary etc. My prolactin has been consistently elevated (but a pituitary MRI ruled out a tumor that can explain my numbers – 82 or so when normal is under 24). Also my DHEAS (which to my knowledge is different than the DHEA) was o the low side of the normal range: 2.9 (normal range 1.6 to 9.5’or something along those lines).

– I have had extensive cardiac testing (ecg’s, Holter monitors, echocardiograms, x-rays, stress tests, blood work) and was repeatedly reassured that my heart is fine. I do have occasional inverted p waves as well as pvc’s but those are no reason for concern.

– I’m taking 2000 IU vit D. I was deficient 2 years ago, took 5000 IU for about 1 year with no issues whatsoever, now I’m taking this as a “maintenance’ dose of sorts. We don’t get that much sunlight during this time of the year, and my condition doesn’t allow me to spend as much time outdoors as I’d like (I’m pretty housebound/bedridden most days)

– I am on 600 mG magnesium glycinate a day – it helps me relax, it helps me with my sleep, it also helps the tachycardia, not to mention it has been a real life saver during my withdrawal from klonopin earlier this year (that’s another story though).

– treatments I have tried so far: low dose beta blockers for the tachycardia; klonopin for what doctors thought were panic attacks, 3 rounds of IVIG (my symptoms – particularly the pains – have started getting worse after the IVIG). One of my doctors is now trying to convince me to start taking prednisone but I am e x t r e m e l y reluctant to give it a try given the possible side effects and the fact that I am somewhat sensitive to meds. For the time being I am relying on tylenol # 3 and turmeric supplements for the pain.

Again thanks for taking the time to get back to me and for your willingness to help.

I’m very open to suggestions and if anyone knows of a good LLMD in Southern Ontario (around Toronto) I’d really appreciate if you could share that info with me.

Blessings,

Alex

[jims]

Hi Alex, I have taken prednisone. As I understand short bursts are acceptable and 5mgs daily is what are bodies should deal with so to speak. I am looking into Cortef. It took allot of time for me to wean off prednisone completely. Now I take Licorice root. I am currently looking into fermented vegetables, already take kefir and probiotics. I take magnesium chloride rubbbed on the back of my knees. I also use an earthing sheet to thin my blood. I think it is and has been an issue for me.CRP 4.8 to 1.8- 90 days on the sheet. (youtube instructions on building your own earthing devices for just a few bucks.) Mushrooms put in the direct sun, gills up yield a ton of vit D. Can be kept in freezer and not lose vit d content. I think its harder to overdose on foods used as vitamins. I am also looking into PEMF, Pulsed electro magnetic frequency. My doc says the science is there. I am however like most others I have to go slow due to resources. One doc said to alternate tylenol and ibuprofen days. Youtube video- minding your mitochondria.(Use diet to feed your cells) These are things my doctor and I are working on. I have no idea how to find an llmd in Canada. I would have to scour the internet. Wish I could be more help. jims p.s. doesn t seem fair to me that doctor house won’t approve an Igenix lyme test, sometimes i think they (docs) view lyme as pandoras box.

[Joanne60]

Alex

good to read you are doing your research and considering lots of possible causes.

I come from a perspective of Lyme Disease and as Lynne suggested strongly advise you get IgeneX to test you for lyme and if you can afford other co infections.

The situation in Canada is maybe as bad as it is here in UK certainly get in touch with http://canlyme.com/ as they will be the best resource to advise on speciaist doctors although most of the lyme patients I know in Canada travel to US for treatment. Jim Wilson founder of Can Lyme has done stalwart work and a friend of mine entomologist Janet Sperling has been involved with excellent research in this field and working with Jim to move the situation forward for proper diagnosis and treatment of lyme Disease in Canada. There was a speciaist center set up for lyme recently but I heard that all they were doing was pushing the old outdated views perpetrated by IDSA cabal and the Ad hoc group that have mis informed doctors over last 10 years – as mentioned http://www.lymediseaseaction.org.uk/latest-news/3216/ lots more of informmation about Ad Hoc group but that is another matter.

You mentioned symptoms of POTS and there is an increasing number of patients with POTS who have Lyme and vice versa. The medical adviser to LDA did a presentation on a patient with Lyme and POTS whose POTS improved on treatment for Lyme http://www.lymediseaseaction.org.uk/wp-content/uploads/2012/08/Sandra-Pearson-The-Neuropsychiatry-of-Lyme-disease.pdf

You mention symptoms which sound very much like some i have costochondritis – inflammation of connective tissue between ribs – very common in Lyme.

Burning and pins and needles are symptoms associated with peripheral nervous system this is an excellent overview which talks about CNS, PNS and ANS in Lyme Neuroborreliosis http://www.lymediseaseaction.org.uk/wp-content/uploads/2013/05/LDA003-2-web-version.pdf

I am sure there is similar information available on CanLyme but I am more familiar with finding things on LDA website.

You say symptoms come and go this is classic for Lyme Disease – migratory – and I have heard said not found in any other disease.

Dr Horowitz is one of the leading doctors on Lyme and other tick borne diseases and has recently written a book very well worth buying because it is applicable for people with other chronic conditions too. I posted about him on my blog and there is a link to several pages of his book in that post http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html

Sorry I do go on and could endlessly but you need to carry on researching as best you can to figure out what helps you preferably with the help of a lyme Doctor.

Best wishes Joanne
ps it was a chance course of antibiotics amoxycillin given for chest infection that significantly improved my joint pain and muscle weakness that led my GP to suspect Lyme Disease my story is on my blog right hand column.

[Joanne60]

Alex

I had forgotten about this post with information on POTS and Lyme Disease from Dr Burrascano
http://lookingatlyme.blogspot.co.uk/2013/07/postural-tachycardia-syndrome-pots.html

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