posted
Hello again, members. I have late stage neuroborrelliosis, with mostly neuro sxs, muscle fasciculations, atrophy, neuropathy, etc.. I have noticed at times my blood pressure runs low, at times 90/60 (was always about 110/80 for years). When you are herxing, or just as part of your sxs, do you ever fell faint, suddenly, but resolves fairly quickly. Scares the jeepers out of me. I'm am on pregnenolone to support my adrenal glands, seeing new LLMD tomorrow. Anyone no of any 'LYME ALS" members who were able to reverse muscle loss, or at least halt it? I'm always looking for hope.
Thanks, everyone, for being there. It's a great forum.
Posts: 143 | From Louisville KY | Registered: May 2010
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chiquita incognita
Unregistered
posted
Hi Cht Girl When I worked in the health setting, we were told that coenzyme Q10 would help prevent muscle wasting if they were on statin drugs for reducing cholesterol.
Amino acids and proteins help to build muscle tissue. I would recommend you read Earl Mindell's The Vitamin Bible of the 21st Century or The Nutrition Almanac for further information.
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chiquita incognita
Unregistered
posted
PS have you had your blood sugar checked? Imbalance can cause fainting.
Insulin resistance test? Oy this is harsh, be ye forwarned.
In my best understanding (if someone has a correction for me here, by all means please post!)....Muscle tissue aids blood sugar processing so if there is muscle wasting then blood sugar balance will be compromised. I would suggest you talk to your doctor and ask about this and how you might rebuild that tissue.
And do a blood sugar-improving diet (we are all guilty!) Fiber really helps a lot, can absorb both blood sugar (excess) and insulin (when there is too little blood sugar because of excess insulin) and therefore aids in blood sugar balancing, writes Linda Rector Page ND in her book Healthy Healing.
Spirulina may not be a bad idea either. It was fed to people who had been starved and could not digest anything but a single-celled organism like spirulina, and to aid muscle tissue replacement. Over time.
Read more about this in Paul Pitchford's book Healing with Whole Foods. Excellent!!
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
My daughter had the same blood pressure issues before treating babesia.. Have you been diagnosed with POTS? It does get better with babesia treatment.
posted
I too have this and have been diagnosed with POTS. Its a form of Dysautonomia. If you look it there is a list of symptoms and it is easy to see if you have it or not.
Lots of Lymies develop some form of Dysautonomia since it attacks the central nervous system. I've heard that it disappears with proper treatment of Lyme/co.
I don't know about muscle wasting...sorry.
*Best wishes*
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I too have dysautonomia. I have inappropriate sinus tachycardia and neurocardiogenic syncope. I always felt on the verge of fainting and then there were the ones related to postural changes (rising from a sitting position) that was even stronger.
I take a beta blocker for the fainting part and a calcium channel blocker for the tachycardia (only because I can only take a minute amt. of the bb).
posted
Thanks everyone, for the wealth of good information. Chiquita, I will definitely look into all that you recommended, appreciate all the info. My new LLMD doesn't feel I most likely have babesia, but possibly bartonella, which she wants to address in a couple of months after a regimen of doxy, flagyl and omnicef. I haven't officially had testing for Babesia yet, Lymetutu. I will review the symptoms for POTS, not familiar with that yet.
Again, thank you, it's so great to not go through this alone.
Posts: 143 | From Louisville KY | Registered: May 2010
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posted
Is this the same feeling, like when you get up from sitting down you become dizzy and your vision becomes fuzzy; sometimes seeing spots and feeling like you're going to pass out?
I get that...
What's this about if anyone else is reading this.
Posts: 829 | From MD | Registered: Dec 2009
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chiquita incognita
Unregistered
posted
Could *possibly* be adrenal fatigue? This is a question, not a diagnosis. Only a possibility.
That's an alternative medical concept FYI. One mainstream physician looked me in the eye and said: "I am not familiar with adrenal fatigue".
posted
Yes, the first endocrinologist I saw last month said he did not believe in adrenal fatigue either. When I asked him to explain why, he stammered and stumbled for a response until concluding that it's not possible. Wasn't very convincing.
Regardless, adrenal fatigue is just a term for a faulty process. Doctors should recognize that there can be faults with anything in the body.
Posts: 829 | From MD | Registered: Dec 2009
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posted
Hey there! Wolfed out explained it exactly...that funnel vision that happened if I moved to quickly. whats the term for positional hypertension or something like that...I was on a med to increase red blood cells and LOTS of ABX and it happened for months. It did go away! after about 6 months of IV ABX. it may not be an additional illness...I believe it was my body fighting a war with bugs in my brain. I am finally able to say I am really getting better!! I havn't been on this site for a while and just wanted to chime in!
-------------------- AzDaisy life requires action Posts: 58 | From Tucson, AZ | Registered: Apr 2010
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posted
Well, thank you both for your responses. I don't think I have POTS, but WHO KNOWS!
I'm going to have to start another thread about the Salt thing, but I'm curious liz, how do you measure out a gram of salt? Does a teaspoon equal a gram or something?
AzDaisy, what medicine were you taking to increase red blood cells?
I think the feeling has something to do with blood circulation (I know nothing about the terms). Let me explain a little more.
When that feeling was strong, sometimes I would notice a vein bulging & throbbing on my forehead. And there would be times, I would sit down in a bright room like the bathroom, and notice my vision would flutter WITH MY HEARTBEAT -- dim, bright, dim, bright... totally trips me out when it happens.
Posts: 829 | From MD | Registered: Dec 2009
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How many of you suffer from bizarre symptoms that nobody seems to understand? Many thousands of patients, myself included, have at some point been left completely puzzled at the mystery of our unexplained medical conditions. In my earlier article, �Quest for a Diagnosis,� I shared my tortured journey towards my diagnosis of Lyme disease. My story represents a small picture of how frustrating it can be to pinpoint the true cause of a medical problem.
Lacking intricate knowledge of complex emerging diseases such as Lyme disease, many physicians become overwhelmed and baffled, and simply give up. Rather than spend the time to accurately diagnose you, they instead label you with something like chronic fatigue syndrome (CFS). This jumbled diagnosis gets them off the hook, and as a result you are left dumbfounded and bewildered as to what the cause of your symptoms is. In my opinion, many physicians give up easily, and �pass the buck� on a patient without thoroughly investigating the true nature of the patient�s problem.
Before I knew I had Lyme disease, I suffered for years from recurrent spells of lightheadedness and dizziness. �Zombie mode� is how I used to describe the mental fog I walked around with every day. Whenever I stood up after sitting for a while, I got a �head rush,� and felt woozy and off balance. Hot weather, hot showers, and standing in lines often brought about an increase in my symptoms.
I developed very uncomfortable feelings of anxiety and shakiness after my �head rushes.� The dizziness would often get markedly worse after I ate a full meal. This was very odd. I thought the shaky feeling might be stemming from low blood sugar (hypoglycemia). Exercise was impossible due to the exhaustion I experienced afterwards. At times, this post-exertional fatigue would last for 2-3 days. I figured my exhaustion was due to the earlier diagnosis of chronic fatigue syndrome (CFS) my flock of doctors had slapped me with.
Disoriented and exhausted, my mental confusion took on the forms of difficulty in concentrating, slurred speech, and panic attacks. As time went on, I became so weak I could no longer drive my car, and I required assistance with simple tasks. My plethora of doctors decided I had Addison�s disease (another wrong diagnosis) and prescribed steroids for 3 years with no resolution. According to my endocrinologist, my adrenals had shut down for �unexplained reasons.� It was not until I was correctly diagnosed with Lyme disease that the cause of my strange symptoms was discovered.
Being a brilliant researcher, my Lyme Literate Medical Doctor (LLMD) sent me a cardiologist to have a tilt table test. Gently remarking that Lyme patients are �backwards� in nature, my LLMD suspected I might have a form of autonomic dysfunction. A tilt table test is designed to help diagnose neurally mediated hypotension (NMH), also known as vaso-vagal syncope, neurocardiogenic syncope and autonomic dysfunction. The medical terms for fainting and low blood pressure are syncope and hypotension respectively. Tilt table testing is a rather simple concept, but requires supervision by a cardiologist.
I was fortunate to have a very Lyme literate cardiologist administer my test. In fact, before my test began, one of the residents in the room griped that he had never heard of babesiosis, which I listed on my patient history form. My cardiologist gave the resident a look of disappointment while remarking that he should study harder if he wanted to make it in the medical profession. Babesia microti, a piroplasm similar to malaria, is one of the tick-borne diseases that complicated my condition.
My tilt table test began with me lying flat on my back, with blood pressure cuffs on both arms, and heart monitors attached to my chest. Measurements were taken at scheduled intervals as I was transitioned from lying flat into a standing position. To prevent me from fainting, I was secured to the table with safety straps. After being raised to an upright position, and remaining there for several minutes, I was returned to a lying down position. Phase two began with an injection of Isuprel, a drug that simulates a stressful situation, thought to mimic the symptoms I was experiencing. Once the drug took effect, I was again raised to an upright position. My heart rate reached 165, and then suddenly dropped to 65 in one beat, as my blood pressure plummeted from 130/70 to 50/0. I fainted and was out cold until they stopped the test and administered the antidote to the Isuprel. Normal blood pressure is typically 120/70.
It was an exhausting experience, however, this test turned out to be one of the most significant tests and discoveries of my health journey. I had a combined neurocardiogenic and vasopressor response, a double fail. This meant that the Lyme bacteria had inflamed my vagus nerve, which is the major communicator between the heart and brain.
My cardiologist graciously explained that when a healthy person stands up, blood normally pools in the legs due to gravity. To compensate for the lower quantity of blood returning to the heart after standing, the body releases adrenaline. The adrenaline surge makes the heart pump harder and faster, thus allowing the blood to pump quickly back from the extremities to the brain and vital organs.
In neurally mediated hypotension (NMH) there is a miscommunication between the heart and brain. As you stand up, and the heart needs to beat faster, the brain �misfires� and sends out the message that the heart rate should be slowed down, and that the blood vessels in the arms and legs should dilate. More blood is taken away from the central part of the circulation where it is needed, and lightheadedness and syncope (fainting) can result. These symptoms occur because the brain is not getting enough blood. Although frightening, fainting can actually help the patient by returning him/her to a flat position, removing the pooling effect of gravity in the extremities, and allowing more blood to return to the heart.
My cardiologist explained that because I had both low blood pressure and the rapid heart rate (tachycardia), I would need a combination of treatments to get my symptoms under control. He recommended Atenolol, a beta-blocker designed to regulate heart rate. I had what he called �backwards blood pressure� and he explained how beta-blockers are normally used to control high blood pressure (hypertension).
In addition to the beta�blocker, he recommended I take the antidepressant Zoloft, plus the mineralocorticoid Florinef to help regulate my blood pressure. Florinef works by acting on the kidneys to keep increase blood volume, thereby increasing blood pressure. Along with the Atenolol, Zoloft and Florinef, my cardiologist suggested I add more salt to my diet, avoid dairy products, alcohol, and caffeine. He also mentioned how essential it would be for me to drink at least 2 quarts of water per day, and double that amount in warmer weather.
I also learned some basic techniques to help me manage my NMH better. Simple posture, it turns out, had a lot to do with the degree of symptoms I felt. Crossing and elevating my legs would help stop blood pooling in my feet. Using cooler water while showering sitting in a chair would help prevent episodes of NMH brought on by the heat. The bizarre dizziness I experienced after eating was due to the blood moving to my digestive system. Eating smaller, more frequent meals helped resolve that uncomfortable symptom. Using a motorized scooter in the supermarket, or shopping during off hours would help prevent the standing in lines that brought about the blood pooling and anxiety/shakiness. The fainting reflex could be activated whenever I stood upright for a period of time. As my LLMD later explained, the Lyme bacteria were the cause of the NMH, and the cause of the inflammation of my vagus nerve.
Determined to always seek the cause, I was relieved to gain understanding of such a commonly misdiagnosed disorder. Just to be clear, some physicians will talk about NMH as if it is a disease. Actually, it is a functional disorder that clinically indicates something much greater. In my case, in order to treat the NMH, I first had to aggressively treat my Lyme disease with antibiotics. By reducing the inflammation caused by the infection, the symptoms of NMH would, in turn, resolve. The medications and dietary changes I had to make would help control the symptoms.
Different treatments for NMH are available, and there is no single course of treatment that will work for everybody. It took several years of antibiotic treatment to get my NMH under control. I tolerated the beta-blocker and the Zoloft well. The Florinef helped me for a short while, but I had to discontinue it due to side effects. As my condition improved, the medication doses were tapered down gradually. I discontinued Zoloft, and reduced the beta-blocker to half a pill in the morning. My tolerance to heat, exercise and prolonged standing improved greatly. Lowimpact exercise with weight training and yoga gave me back enough strength to walk on a hot Caribbean beach without symptoms.
Based on my experience, I know there are plenty of folks out there suffering from NMH without a clue as to what is going on with their bodies. If you are experiencing symptoms of lightheadedness, dizziness, shakiness, brain fog, and intolerance to exercise, ask your doctor about the possibility of NMH. It might be a good idea to see a cardiologist and have a tilt table test. It has been speculated that NMH may be the cause of chronic fatigue syndrome and fibromyalgia. Although I agree that NMH causes one to feel extremely fatigued, the cause of the dysfunction must be investigated.
NMH can be difficult to explain, even to medical professionals. In simple terms, although in reality it is more complicated, you can call it orthostatic intolerance, low blood pressure, or syncope. Most medical staff should understand that basic medical terminology.
Whenever I had to list my medications for a doctor visit for whatever reason, nurses always assumed I had high blood pressure because I was on a betablocker. Time after time I had to correct that inaccurate presumption, and explain the neurological technicalities of NMH. It is sadly entertaining because the paid professionals are supposed to be taking care of me, and there I was, educating them!
As I have mentioned in previous articles, I cannot stress enough the vital importance of educating yourself about your medical condition. Ask questions, take notes, research and arm yourself with as much detailed information as you possibly can. It is my hope that my story can help you on your journey towards perfect health.
Posts: 789 | From CT, | Registered: Jun 2006
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posted
In regards to using Florinef as a treatment, I find this interesting tidbit of information that could explain why Florinef had to be stopped in the above case.
"Note: Dr. Cheney has found that Florinef is not a good treatment option for NMH in most CFIDS patients. Florinef forces potassium depletion and further suppresses the HPA axis, which is already suppressed. Initial short-term benefits are seen
with Florinef, but they degrade over time. With extended use Florinef actually exacerbates the disease in many patients."
posted
And you never know when this will hit. I thought this was one thing I had escaped in the array of lyme symptoms I have had over the years.
But then the other day in a store, when I had been standing for quite a while and it was rather hot, suddenly the room started turning dark and I was on the verge of fainting. Had to sit down, drink water.
NMH for sure.
The interesting thing is that years before this, when I didn't have lyme, I would feel like fainting once in a while when I stood up after sitting for an extended period. Thyroid/adrenal issues run in the family. Or maybe this was hypoglycemia.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I had near-syncope and syncope issues early on/pre-lyme diagnosis in my illness...with spiking BP readings and heart arrhythmias...to the point that I coded in the ER and a pacemeker was recommended. It was pretty ugly!
See if you can find a lyme-literate/lyme-aware cardiologist that could make sure that you don't have any underlying heart issues. This can be serious stuff!
Good luck and hang in there!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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That was very informative! My TTT results were very similar to yours.
My cardio/ep is not LL, he thinks only heart block is from Lyme. I whole heartedly believe that Lyme is the cause of my IST and NCS along with all the other diagnoses I have. I did have the graying out as a child, too, but may have had Lyme most of my life.
Wolf,
Don't take table salt! Get sea salt and it will tell you something like 1/4 t equals a gram. I put it in a couple of ounces of water and let it dissolve and then drink it. Make sure you are keeping hydrated, too.
I was up to 6 g of salt at one time, doing the salt/C protocol and my cardio wasn't alarmed in the least.
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