Low low blood pressure with Lyme!!

[Robyn072]

Does anyone get really low blood pressure with Lyme and Co?  Mine has been really low the last few days and this morning it was 72/43 with a pulse of 55. I have had back pain central on the right hand side for the last nine days that is worse in the middle of the night while I am sleeping (at least trying to).

I am so used to just chucking everything into the Lyme basket now that I guess I am concerned that I am becoming a bit  to laid back with my weird health symptoms.  My GP doesn't really know anything about Lyme and my LLMD is 2200km away.  Any suggestions????

[leilajax]

Wish I had seen this old post about low blood about a month ago when I posted nearly the same question.  LOL.  Obviously, low blood pressure is common here in the Lyme community.  Yay, I'm not alone.

PoohBear, as far as you suspecting your adrenals, which Lyme does affect, did your doc test you properly.  Morning cortisol and standard ACTH testing is not good enough.  A lot of people can have normal morning cortisol and tank by noon (myself, being one of the lucky) or you can have an afternoon cortisol spike.  Did your doc run the 24 hr adrenal saliva test.  It will show your cortisol levels throughout the day, your DHEA, ACTH, saliva IgA.... etc.  Lots of very valuable information.  I was told that I didn't have adrenal fatigue until the saliva test showed that my cortisol tanked at noon and continued to stay low for the rest of the day.  The test usually isn't covered by insurance and runs around $180.  If your doc is unwilling to order than you can order your own saliva kit (there are several labs on the internet).  You just ship it back to the lab and get your results in the mail.  You may also want to have your aldosterone and urine sodium tested.  
The tough part.... even if your saliva test shows that you have adrenal issues, to my knowledge, when you have Lyme treatment for adrenals alone is minimal... as in adrenal support vitamin/herb supplements.  Most people with adrenal issues take hydrocortisone (HC), which is a no-no for us with infections.  Your best bet is to treat the Lyme, which is the prime culprit for your adrenal issues, and support the adrenals with supplements.

[JackieCalifornia]

Sorry to hear you have need to come visit us again....

From what I have read, Lyme can indeed mess with bodily system that control blood pressure and cause symptoms like you are having.  It's spring/summer, so you could have gotten bitten again (there is no immunity against a new Lyme infection, as far as I know) or possibly your previous treatment was not fully effective.

One reason I say that is that less than a month of treatment for Lyme, unless you begin treatment almost immediately after being bitten, may well be insufficient.  If your previous doc is does not follow the ILADS diagnosis and treatment approach, I would strongly recommend finding an LLMD for a second opinion to deal with the infection(s) once and for all.

Also, others here have reported the gastrointestinal symptoms you are having, or something similar.  If you don't get any comments on that point, try starting a new thread, since this one is getting pretty long.  

Let us know how we can help, okay?  

[PoohBear527]

I was diagnosed back in 2009 and treated for almost a month...Have been very sick for almost two months...extremely fatigued, bloating in stomach that I have never had before (painful and very hard to eat), nausea, high blood pressure which I have never had before but drops about 20 points upon standing. Kidney issues, pain in back, dizziness. I went in for cortisol testing and they say levels are good...extreme cravings for salt...got a call today and was told that Lyme has come back. I still have many issues that mimic adrenal malfunction...tests do not support it...:(...very frustrated

[youvegottobekidding]

I do think it's worth getting your cortisol tested again.
The saliva test is expensive, but you can have an early morning blood test that is much cheaper. If it is low early morning you can safely assume it is lower than it should be all day.

There's a blog here that summarises the book I mentined and explains how the exterme exhaustion, low BP and POTS (postural orthostatic tachycardia syndrome) and OI (orthostatic intolerance - means you get sudden low BP when you stand up) all stem from cortisol deficiency.
(You'd need to remove the random spaces I put in)

http://ihateticks . wordpress.com/ 2012/10/ 09/do-you-feel-tired-all-the-time/

BTW, if you are taking beta blockers, make sure you are also taking supplements of all the nutrients they steal from the body. You can get bad nutritional deficiencies if you use beta blockers long term without doing this.My dad ended up with a serious lung disease from them, I think it resulted from the nutrietional deficiencies he got.

[Robyn072]

Exactly! Well put.  We have friends one town over from where we now live who also have been diagnosed with Lyme that they would have had for at least 20 years.

We are taking our first trip out of the country next month, still waiting for one passport to arrive.  So definitely sure we never caught it over seas......because you kinda have to go over seas to catch it overseas.  It really is appalling when you think about it!  

[Ricobord]

Magnesium doesn't so much lower blood pressure as it soothes irritated nerves and muscles.  Someone posted here earlier about being a nurse and how they gave it post-op to heart surgery patients to help avoid tachycardia.

I am so sorry to hear you've had it for 30 years. Ugh. When the Aussie government announced in '94 that there was no Lyme in the country, I wonder if it occurred to them that their logic was flawed. Absence of proof is not proof of absence!  You got it a dozen years before that.

There were doctors protesting that announcement saying there were too many examples of people with Lyme who got sick after being bit by a local tick, and not overseas as the gov't insisted.  

I still can't figure out how sticking your fingers in your ears and yelling "LALALALALA I CAN'T HEAR YOU!!! means that it doesn't exist.

[freefallin]

Yes, it just worried me when my BP readings started being that low because, while they're not low per say, they're low for me. In the past, my BP was generally around 140/90. and the first time I got a reading around there was around the time that my chronic exhaustion started. I never had fatigue as a symptom beforehand, and suddenly I found myself with barely enough energy to think let alone get up and do things, so I thought that maybe something was causing my BP to lower, which, in turn, made me tired. But it's all just guesswork.

[Robyn072]

Thanks for all your thoughts.  

My LLMD has me on a very strict diet and bananas, sugar, caffeine and chocolate are all part of my definite NO NO list, so looks like I am on the right path there already.  It would be interesting to know where my cortisol levels are now...I know that in 2006 they were really high.

I can certainly relate to feeling physically  sick with stress (even seemingly trivial amounts) and the endless sugar cravings

[mojogal]

True, I think when I got the diagnose in 98 they called it my name but now your name is the most common.
At any rate it's the same thing that Lyme does to us, I also had very high heart rate which was only controlled with my beta blocker, and it still is like that now,

[youvegottobekidding]

Hi folks,

I admit I havenìt read all the messages here as I am in a bit of a hurry, but I kjudt wanted to tell you I had very low BP (usually 70 / 45) for years. I also had tachcardia (average 150bpm) , which would sometimes turn into bradycardia (50bpm)

In lyme disease, It is all caused by having low cortisol levels. Lyme (like any other chronic infection) makes your adrenal glands work so hard that sooner or later, they run out of nutrients and hardly make any cortisol at all. Cortisol is one of the essential factors that controls blood pressure and heart rate.

I followed the advice of a really excellent book called Adrenal Fatigue by James Wilson and it got my very low cortisol level up to normal in about 3 months. He talks abotu herbs as well as nutrients and lifestyle cjhanges, I found the herbs too strong and I suggest, given you are in this for the long haul with lyme and probably already full of drugs, that you just use nutrients.)

Sorting this out got rid of various other symptoms I thought were lyme things, such as sleeping badly despite being exhausted, constantly needing a pee in the night, having irregular and funny periods, feeling physically ill when anything stressful happened, endless sugar cravings which gave me a pitifully brief energy boost, etc.

I advise reading the book, but the main tihngs you need to do are:
avoid potassium (in vit pills and even bananas)
every time you want a sugary snack, eat a salty one
no caffeine
no chocolate (very important!)
take vitamin c and vitamin B5 (there is a whole bunch of nutrients to take and magnesium adn calcium are important, btu these 2 are the main ones)

As far as heart problems go, heart pace is partly controlled by calcium, zinc and magnesium. They all work together. I have taken all of them for many years and still had heart probs (I did actualy need a heart op). What finally sorted out my hart rate was getting my cortisol level OK.

[Robyn072]

Yes Rico. Lyme before kids.  I was only 10 when bitten and am 40 now.  It was actually the realisation that all of our families weird symptoms were probably related that got me to pull my head out of the sand and get tested.  Because I was the sickest we decided to start testing with me, which would then add validity to everyone else's cases (particularly because the kids are probably congenial which is another can of worms in itself in a country/continent that supposedly doesn't even have Lyme).  Also because getting me treated will hopefully mean that I will be able to join the workforce to pay for everyone else to get diagnosed and treated.  We've been a one income family for 20 years (apart from a couple of stints in the workforce that knocked me off my feet each time for a couple of years).

My husband has disc degeneration in 2 discs that have ruptured and one has been surgically shaved. I have suffered with sciatic pain for 19 years - this pain does feel very different from that and what hubby goes through.

I am taking flaxseed oil capsules, fish oil capsules, aloe vera juice and evening primrose oil - all of which are supposed to help with inflammation.  I will look into the others that you have mentioned. Thanks for your thoughts all.

[Robyn072]

So will magnesium make low blood pressure lower if it reduces high blood pressure?

[Ricobord]

I have read of others with Lyme who had bad back pain. My PA asked me more than once if I've had any. (I haven't...I am a rare case of no muscle or joint pain.  Lots of other nasty symptoms, though!)

Lyme can affect the connective tissue of the back muscles. I don't know for sure, but I would guess that it could also affect the spinal nerves. I have seen multiple stories of disk degeneration that started during a Lyme infection.  I have two in my neck, but I don't know if they were there before Lyme or not. They've never caused any symptoms.  It makes sense that Lyme can be linked to disk degeneration...spinal disks are connective tissue.

Since your pain is to the side of the spine, I would guess it is not the disks.

Since OTC pain meds can be a problem over time, you might do some research on natural anti inflammatories.  I take 3000mg of omega 3's, Meriva Curcumin, and evening primrose oil during PMS and early part of my cycle. There are certain foods to eat and to avoid in order to reduce inflammation in the body, which can reduce pain.

I can't remember, but do you think you got Lyme before you had your kids? If both have heart rhythm irregularities, you'll definitely want to get them to an LLMD for an exam.

[JackieCalifornia]

Rico's message triggered a thought ... when I told one doc (not a Lyme specialist) that I was taking Mg supplements, he sneered at me (as he had been through the whole appointment, not being a 'believer' in Lyme) and said that taking Mg supps would cause kidney damage.  I then asked one of my other docs that I trusted if that was true, and this doc said that I would get diarrhea from too much Mg before I got any kidney damage.

So, that's the long way of saying that I too have heard indirectly that there can be a tie between kidney function and Mg intake, so it's a good thing to follow up with your doc further.

Epsom salts *are* magnesium, only absorbed through the skin.  I don't know if there's a magic cutoff mechanism when your body stops absorbing the salts if it's gotten enough, but I'd ask the doc what the interplay is among your kidney ailments, Mg supplements, and Epsom salts, just so that you are both on the same page about what's going on and what effect the Mg and the salts might be having.

I got in the habit of taking to all doc appointments a current list of all vitamins, supplements and prescriptions I was taking, with dosage -- some docs didn't care, but some were very interested because of the interactions and effects that can result.  But I'd def. follow up with the doc about the Mg and its effect on your kidneys --

Let us know how you do, okay?

[Ricobord]

A resting heart rate of 115 is too high. When mine was in that range, I felt really crummy. I felt a lot better on the metoprolol succinate.

Definitely ask your doctor if you can take something to bring your heart rate down. I have no idea how being pregnant factors into it, but that is obviously important.  

If you have low BP already then a beta blocker is not good as it also lowers BP.  I had to reduce my dose because I was dizzy every time I stood up. My Systolic got down to the low 90's and I don't do well that low.

Clearly my BP has made a bigger move back towards normal than my HR has.

[Ricobord]

I was taking a 200mg pill three times a day for about a year. I am very sensitive to when my blood level drops. My shortness of breath gets noticeably worse. After I take a dose, it eases up within about 20-30 minutes, depending on how empty my stomach is.  I went without it for a week or two before my last round of kidney tests, and I definitely missed it.  

My nephrologist said that magnesium will only be hard on a kidney that is diseased/compromised and since mine are not (yet), she said magnesium supplements were fine and I could resume them. I went back on two a day, which is 400mg.

The only time I had diarrhea on magnesium was when I took Epsom salts orally. Either I took too much or I am sensitive to it, but now I know I can use it as an effective and inexpensive constipation remedy. ;)

I first read about how low magnesium can lead to difficulty taking a full or satisfying breath while I was searching for answers about why I felt so bad.  I found a post on an MS board where a MS patient reported that a pharmacist had told him to take it to ease his "air hunger." But he also warned not to take it at the same time as Vitamin D as the Vit D would "monopolize" the magnesium.  Or maybe it was that the magnesium would monopolize the D. Hmm.  That was back in the day of poor short term memory.

I wasn't able to confirm this conflict elsewhere, but I just decided to take them two hours apart just in case.  Both are important to a Lyme patient, so I want to make sure I can actually use both.

Two of the meds I was on earlier this year said to take separate from magnesium, as magnesium would absorb the medication.  So be sure to read the info sheets on your meds. You wouldn't want to thwart an antibiotic.

On days I feel like garbage, I go take a 20 min soak in an Epsom salt bath. It is very calming. Being more relaxed seems to ease the "garbage-y" feeling.

[JackieCalifornia]

I'm glad the doc was interested in what might be going on -- low blood pressure and kidney function can be linked somehow in ways I don't know.  Hope you feel better soon -- do you have a follow up appointment scheduled?

[Robyn072]

Went to the Dr's and couldn't get in to see my regular GP.  She didn't even write down my low bp (or take my bp during my appointment), she said she was more worried about my back pain and has sent me to go and get a renal ultrasound.

Bp 78/35 today. Feeling like garbage. :-(

[JackieCalifornia]

I just searched for

                        lyme disease autonomic dysfunction

and there are lots of hits and discussions and publications.

[nervousmummytobe]

My blood pressure tends to be normal however my heart rate is usually 115 resting an sometimes shoots to 130

[Stargazer_Lilies]

Me, too...I failed the tilt table test and it scares the hell out of nurse.  

Neurocardigenic syncope is another term for neurally mediated syncope, and I notice most of the doctors never heard of "neurocardigenic syncope" so I used neurally mediated syncope or hypotension.

[JackieCalifornia]

I get mine online ... haven't seen it in stores.  Google/search it and you'll find it, but other formulations may work all right for you.  I've heard others say some Mg types worked better for them than others, so it's a bit of trial and error.  Mg malate was my second favorite, and I know that's in stores.

[mojogal]

I had it so badly before I got so sick, that I use to pass out, did a tilt table test, which I failed and they named it Neurocardiogenic syncope. So yes, that seems to be a common thread. I also have a very low body temp.
Hang in there.

[blamom]

both low blood pressure  and low  blood sugar, passed out a few weeks ago because of it