Home Forums General Discussion OT Blood pressure med support group

This topic contains 16 replies, has 4 voices, and was last updated by  Trudi 3 years, 2 months ago.

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  • #307086
    Jan Lucinda1
    Participant

    Does anyone know of a blood pressure med support group? A friend would really like an informed discussion.

    #365634
    richie
    Participant

    Hi I havent heard of one -mainly because with all these meds around -blood pressure levels are very controllable –
    richie

    #365635
    Trudi
    Participant

    @richie wrote:

    with all these meds around -blood pressure levels are very controllable

    Hi Richie–
    For the last 22 years (since dealing with fluoroquinolone damage along with Lyme and coinfections) I have uncontrolled high blood pressure. I believe it is Babesia that can be a cause. My BP at its worst was 230/120 for about 6 months; I had numerous tests but all were OK. Oddly enough, after all these years, my eyes don’t show any signs of hypertension. I am very thankful for this. My body has a difficult time detoxing, whenever I do anything to help it detox, (massage, sauna, even lemon water), my BP skyrockets.

    I pay close attention when blood pressure is discussed. There is a lot of uncontrolled high blood pressure out there, even with modern medicine. I believe the cause is that the underlying problem is not addressed. My mom suffered with uncontrolled hypertension for 37 years; drove her doctors nuts. She didn’t have problems with her blood pressure until a hysterectomy at age 50. She died at age 87.

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #365636
    Maz
    Keymaster

    I pay close attention when blood pressure is discussed. There is a lot of uncontrolled high blood pressure out there, even with modern medicine. I believe the cause is that the underlying problem is not addressed. My mom suffered with uncontrolled hypertension for 37 years; drove her doctors nuts. She didn’t have problems with her blood pressure until a hysterectomy at age 50. She died at age 87.

    Hi Trudi,

    Interesting you should say this, because my doc mentioned a close relative of his who also has the same issue and was put on 4 different BP meds and still has high BP. Has your BP come down since you discovered your MTHFR genetic mutation and have lowered your inflammation by treating elevated homocysteine or (aside from the usual culprits) have you uncovered other potential root causes?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365637
    Trudi
    Participant

    @maz wrote:

    Has your BP come down since you discovered your MTHFR genetic mutation and have lowered your inflammation by treating elevated homocysteine or (aside from the usual culprits) have you uncovered other potential root causes?

    Hi Maz–
    Treating the MTHFR is probably a two-edged sword. Without question it has allowed me to be pain-free without meds (although not my knees when walking–pain meds never touched this pain); however, as it is supposed to, it is making me detox, which for me increases my BP. I also started drinking bamboo leaf tree which is high in silica. Amongst other things, silica detoxes. A wonderful benefit that I am seeing is the fading of age spots. However, as I’m sure you have guessed, my BP is not doing good.

    I enjoyed about a week’s worth of low blood pressure back in early January. For about 1 1/2 days I was in bed feeling sick to my stomach with no interest to eat or drink. My BP went down to 97/68 and hovered at around 105/71 the rest of the time. Since then, it varies between 129/92 to 159/103 with spikes of 163/116 usually on days I shower. I’m mentioning the spikes because I have not figured out why a shower causes my BP to spike. Any thoughts would be welcome.

    Prior to getting sick, my BP was always around 110/75 🙂 (except at the end of my three pregnancies, then it went up–doctor said that is just how my body works).

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #365638
    Trudi
    Participant

    @Jan Lucinda1 wrote:

    Does anyone know of a blood pressure med support group? A friend would really like an informed discussion.

    Hi Jan–
    I’ve never looked for a BP support group. It would be a good place to find out what works/doesn’t work for people. When it comes to meds, http://www.askapatient.com/ has patient reviews which may be of help.

    EDIT: I did a search for blood pressure support groups; there are LOTS. This one sounded good: http://www.dailystrength.org/c/High-Blood-Pressure/support-group. Good luck to your friend.

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #365639
    Jan Lucinda1
    Participant

    Trudi- Thanks!!

    #365640
    Maz
    Keymaster

    @trudi wrote:

    @maz wrote:

    Has your BP come down since you discovered your MTHFR genetic mutation and have lowered your inflammation by treating elevated homocysteine or (aside from the usual culprits) have you uncovered other potential root causes?

    Hi Maz–
    Treating the MTHFR is probably a two-edged sword. Without question it has allowed me to be pain-free without meds (although not my knees when walking–pain meds never touched this pain); however, as it is supposed to, it is making me detox, which for me increases my BP. I also started drinking bamboo leaf tree which is high in silica. Amongst other things, silica detoxes. A wonderful benefit that I am seeing is the fading of age spots. However, as I’m sure you have guessed, my BP is not doing good.

    I enjoyed about a week’s worth of low blood pressure back in early January. For about 1 1/2 days I was in bed feeling sick to my stomach with no interest to eat or drink. My BP went down to 97/68 and hovered at around 105/71 the rest of the time. Since then, it varies between 129/92 to 159/103 with spikes of 163/116 usually on days I shower. I’m mentioning the spikes because I have not figured out why a shower causes my BP to spike. Any thoughts would be welcome.

    Prior to getting sick, my BP was always around 110/75 🙂 (except at the end of my three pregnancies, then it went up–doctor said that is just how my body works).

    Take care,
    Trudi

    Hi Trudi,

    Has anyone checked your adrenal function?

    Wondering if the temporary respite with low BP while you were sick was due to dehydration? If not that, then have to wonder about gut microbiota and if there may be food intolerances that could be causing these spikes. Dunno really…just a guess, based on what you’re saying.

    Another guess, without really knowing any deets of meds/food/chemical allergies, etc., is that you know your body best and you’re probably right about the double-edged sword re: MTHFR and detoxification. A hot shower or bath will usually lower BP, as blood vessels expand to increase blood flow and this is one reason why the H2O2 and epsoms baths can help some so much. If you’re experiencing the opposite and the shower is pushing your detox buttons (in addition to the bamboo leaf), then this could well be what is going on. Anticipating that BP will be high can also cause it. Could there be any supplement, food or chemical you’re being exposed to that may be causing some kind of intolerance?

    Sorry you’re experiencing this when you’re doing so well otherwise. It’s been quite a journey for you and I know you’re an avid researcher and strong self-advocate, so I am willing to place a bet that you’re going to find the answer to this!

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365641
    Trudi
    Participant

    @maz wrote:

    Has anyone checked your adrenal function?

    Wondering if the temporary respite with low BP while you were sick was due to dehydration?

    Could there be any supplement, food or chemical you’re being exposed to that may be causing some kind of intolerance?

    Sorry you’re experiencing this when you’re doing so well otherwise. It’s been quite a journey for you and I know you’re an avid researcher and strong self-advocate, so I am willing to place a bet that you’re going to find the answer to this!

    Hi Maz–
    Recently, I had a saliva test for cortisol levels but nothing else for the adrenals. EDIT: Back in the early 90’s I had a major work-up at the Mayo clinic checking for tumors on my adrenals. Since then I’ve had various tests including checking the blood flow to the kidneys.

    I thought, too, that the drop in BP could be because of dehydration.

    I’m sure that something is stressing my body in addition to the detoxing; I’ve thought about getting a shower filter in case something in the water isn’t agreeing with me. EDIT: Because of the fluoroquinolone toxicity, I have to avoid meats where antibiotics were used; also, soy products are a trigger for pain–that is why I try to avoid foods with fillers–soy is hidden in a lot of foods.

    It has been a long journey. Genetic wise it has answered a lot of questions. If I can save my three kids some grief from the knowledge I’ve gained, it will have all been well worth it!

    Thanks for your input–
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #365642
    Trudi
    Participant

    @Jan Lucinda1 wrote:

    Thanks!!

    Hi Jan–
    You are welcome.

    Your friend might find this an interesting read. It is a quote from Dr. Ben Kim’s article on Hypertension:

    I completely agree with the idea that consistently having high blood pressure can increase your risk of suffering a heart attack, stroke, and kidney problems. What I don’t agree with is the approach of lowering blood pressure without doing one’s best to discover and address the root causes of high blood pressure for each person.

    Please don’t miss this point: in the vast majority of cases of high blood pressure, the pressure is high because it needs to be.

    http://drbenkim.com/articles-highbloodpressure.html
    The bolded part is very important. He describes his thoughts very adequately throughout the article.

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #365643
    Maz
    Keymaster

    @trudi wrote:

    @maz wrote:

    Has anyone checked your adrenal function?

    Wondering if the temporary respite with low BP while you were sick was due to dehydration?

    Could there be any supplement, food or chemical you’re being exposed to that may be causing some kind of intolerance?

    Sorry you’re experiencing this when you’re doing so well otherwise. It’s been quite a journey for you and I know you’re an avid researcher and strong self-advocate, so I am willing to place a bet that you’re going to find the answer to this!

    Hi Maz–
    Recently, I had a saliva test for cortisol levels but nothing else for the adrenals. EDIT: Back in the early 90’s I had a major work-up at the Mayo clinic checking for tumors on my adrenals. Since then I’ve had various tests including checking the blood flow to the kidneys.

    I thought, too, that the drop in BP could be because of dehydration.

    I’m sure that something is stressing my body in addition to the detoxing; I’ve thought about getting a shower filter in case something in the water isn’t agreeing with me. EDIT: Because of the fluoroquinolone toxicity, I have to avoid meats where antibiotics were used; also, soy products are a trigger for pain–that is why I try to avoid foods with fillers–soy is hidden in a lot of foods.

    It has been a long journey. Genetic wise it has answered a lot of questions. If I can save my three kids some grief from the knowledge I’ve gained, it will have all been well worth it!

    Thanks for your input–
    Trudi

    Hi Trudi,

    As your adrenal work-up was in the 90s, would it be worth asking about a 24-hour urine collection re-do test for adrenals, as saliva cortisol really only tests for that hormone, as you will already be aware. So, you’re spitting in test tubes like me, eh? 😆

    Couldn’t agree with you more on the gene profile for helping our kids out…my hubby is also getting his MTHFR status checked this week, as he already takes folic acid for elevated homocysteine.

    It’s interesting browsing the literature on BP and environmental and dietary allergies….so many skin care products can also contain things that we’d be more apt to think of as being a dietary offender. Can’t imagine you haven’t tried it, but do you use a lactose-free bovine colostrum?

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365644
    Trudi
    Participant

    @maz wrote:

    1. would it be worth asking about a 24-hour urine collection re-do test for adrenals

    2. So, you’re spitting in test tubes like me, eh? 😆

    3. my hubby is also getting his MTHFR status checked this week, as he already takes folic acid for elevated homocysteine.

    4. Can’t imagine you haven’t tried it, but do you use a lactose-free bovine colostrum?

    Hi Maz–

    1. I will have to talk with my doctor about revisiting this.

    2. I absolutely cannot get enough spit together; I can only do tests for saliva if I can suck on the cotton :(.

    3. Your husband is taking the active folate, not the folic acid, right?

    4. I have not done the colostrum. However, I just came across this article and will look into it:
    http://lyme-colostrum.blogspot.com/2013/05/universal-oral-vaccine-article.html#!. Do you use a certain brand?

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #365645
    Jan Lucinda1
    Participant

    Trudi-

    I’ll tell her about Dr. Kim’s article. I read it and it is well written.

    Jan

    #365646
    richie
    Participant

    Hi Dr Ben Kim is not a medical doctor rather a chiropractor –Not for my money or my approach –That is the difference between us –I really dont care what caused a problem -just give me something to fix it —that is why imo having a knowledgeable internist is so important —AS to finding causes –I have to say that in the vast majority of illnesses definitive causes have not been found –maybe this -maybe that –could be this -could be that -just give me a prescription –I am not into root causes –I must say my approach has served me well !!!!!!!!!!!!!—The most important job we have is finding competent knowledgeable doctors –with todays internet we are able to CAREFULLY research a doctors background– education -complaints -malpractice suits etc –Everyone should be doing this before selecting a doctor —you would be surprised how much this can help–Incidentally my outlook is what so-called modern medicine is all about –I.e. It took me about 5 or 6 blood pressure meds to finally hit on a combination of two plus a diuretic that keeps my pressure very stable —
    richie

    #365647
    Maz
    Keymaster

    @trudi wrote:

    4. I have not done the colostrum. However, I just came across this article and will look into it:
    http://lyme-colostrum.blogspot.com/2013/05/universal-oral-vaccine-article.html#!. Do you use a certain brand?

    Hi Trudi,

    Arthritis Trust has some fascinating articles and I really enjoy revisiting them at intervals for refreshers. The one you posted is a goody!

    Will send you a PM re: brand that works for me. Whatever brand one selects, my understanding is that it must be colostrum that is derived from ‘first milking,’ within 6 hours of calving, from organic, grass-fed cattle, in enteric-coated caps and lactose free. I found a reasonably-priced product that is made by a FDA-approved facility and buy it in bulk for discounted pricing. I use 4x the recommended daily dose and worked up slowly to avoid any potential herxing effects.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

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