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» LymeNet Flash » Questions and Discussion » Medical Questions » Wanting to hear from patients with severe fatigue as #1 complaint

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Author Topic: Wanting to hear from patients with severe fatigue as #1 complaint
Hoosiers51
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This is my main complaint, because it is the most disabling of all my symptoms.

The beginning of my illness was chest pain and very sudden fatigue that started overnight, and I went from being super healthy to sleeping 18 hours a day. So we assumed I had mono, though I don't test positive for it even now. So it was probably lyme/babs/bart that hit me, given it was late spring and I was in tick country.

A lot of my symptoms have gotten better over the years I've been treating---the headaches, the dizzy feeling, the brain fog, the derealization, the heartburn, the chest pain, the night time feverish feeling. Tested positive for Lyme, bart, babs duncani.

The fatigue has gotten better, but it is still sooooo bad. I would be considered a healthy person if it wasn't for the fatigue.

My fatigue is basically a severe lack of stamina. It's accompanied by drowsyness. I'm really starting to think it could be XMRV.

But I don't have the CFS issue where you get "post exertional malaise." I just don't have the energy to initiate anything that would make me tired afterwards. I can't try to force it, because the energy isn't there. It's like I just don't have enough fuel in my tank in the first place to start an activity...... so I either can do it, or I can't. It's not a question of, "will I pay for this afterwards?"

Can anyone relate to this? I am so desperate for this to get better. I have been through SO many treatments for Lyme, Bart, babesia. What should I focus on? Is this symptom something other than tick disease?

I also have dysautonomia, but it isn't horrible. My blood pressure is good enough. I don't pass out.

I have tried adrenal glandulars and they don't help. My adrenal saliva testing wasn't too far off. I have tried thyroid meds and they really don't help at all. NT Factor Energy doesn't help.

Can anyone tell me what has made this better for you? (if lyme treatment, which drugs specifically?)

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djf2005
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Have you tried Provigil or another med like it?

I know it's not the best idea but sometimes there is little alternative...

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

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Hoosiers51
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ps--the fatigue gets a lot worse the days before and during my period. I don't know if that "means something" like I should be on "the pill," or if it's just par for the course with Lyme.

I am definitely not in need of progesterone. Tried that and my periods became super close together and my symptoms didn't improve.

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Hoosiers51
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I tried Provigil and it seemed to give me an agitated type of energy, but not really the kind of energy I could make use of.

I have found the best stimulant is actually coffee or espresso. But some coffee brands make me agitated without much gain (like the Provigil), but others provide me with great energy where I temporarily seem like a much healthier person. (but if I use it too much, I do end up crashing so using large amounts daily is not sustainable over, say, 5 days).

Coffee can help some POTS/dysautonomia patients because it helps your blood vessels push the blood upwards, so I wonder if that's what's going on.

Adderall does help some, but like larger amounts of strong coffee, it makes me crash to where I'll spend 2 days recovering from the mild "high" of energy, so it's not worth it. In the end I end up run-down.

The crashing is not even like post-exertional malaise, it's moreso like it seems to be pushing my adrenals to the brink of exhaustion, whereas when I'm not forcing stimulants on myself, the adrenals seem fine.

I hope some of this is making sense. It's the best way I can describe it. Provigil seems to help a lot of Lymies though, so maybe I should revisit it at some point. Thanks for the suggestion.

Oh, also....when I'm taking breaks from Lyme treatment, the fatigue seems to be better (though not fully better), so I think some of it could be toxins. Who knows. I try to detox as much as I can, but there's only so much one person can do.

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WildCondor
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The coffee is a bad idea if you have NMH, your cardiologist should have explained that to you. What it does is stimulate adrenaline, which in turn makes NMH worse. To keep up BP most people take FLorinef and a beta blocker. Sounds like you are taxing your adrenal glands and making your heartburn worse with the coffee approach. You might try capsules of green tea, that helps energy too.

The NMH is a huge part of the fatigue factor and once you manage that correctly you should feel improvement.

Supplement wise, best for me was Methylcobalamin shots 1 cc daily for 6 months. Has to be taken before 9 am so you sleep at night. Huge increase in stamina and energy. Another good energy booster over time is Cordyceps.
Shots of B1, B5 and B6 plus magnesium are also helpful, although do the magnesium shots at night they can be relaxing, [Smile] .

Did you take the NY Factor energy for long enough i.e. several months?

WHat Lyme treatments have you been on, put all meds and the doses.

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sutherngrl
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I hate all my symptoms; but yes fatigue is the one that is most disabling for me too. That and feeling like I am choking.

My symptoms started with flu like symptoms, the achy pain and fatigue, and progressed from there. Fatigue caused me to have to quit my job. I could not sit up or stand up long enough to work.

For a while the brain fog was also pretty much disabling; but I feel I have regained about 50% of my brain. Now its mostly just pain and still severe fatigue.

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jarjar
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I was misdiagnosed with cfs for a long time. Something that helps me greatly to raise my energy level/glutathion level was something my old cfs doc use to tell her cfs patients to take. Vespro NitroPlex Protien Powder and 500mg of N-Acetyl Cysteine.
I tried other protien powders and never got the same response. I would take a scoop everyday for a couple of weeks till my energy/stamina improved then back off to every other day. As it gets expensive to take daily. There is one site on the web that sells it cheaper then others.
Her other option was take glutathion shots with atp once a week to raise energy/stamina.
If one is truly exhausted taking stimulants alone can wear you down over time.

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sutherngrl
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It seems that fatigue might be a warning to signal your body that it needs to rest. Or at least rest is needed to protect the body from what is happening to it.

The kind of fatigue I get, is like my body is shutting down. It just decides it cannot go another step.

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EyeBob
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What's NMH?
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ping
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quote:
Originally posted by WildCondor:
The coffee is a bad idea if you have NMH, your cardiologist should have explained that to you. What it does is stimulate adrenaline, which in turn makes NMH worse. To keep up BP most people take FLorinef and a beta blocker. ...

WC, did you mis-state this or am I misunderstanding you? Beta blockers lower BP, not raise it, as I take them & other rx's for severe hypertension. (We are talking blood pressure, yes?) Didn't know they were used to lower BP in any way....(I learn something new every day.)

Hoosiers - Aren't you one of us trying PSP therapy? If so, how many months into it are you? And in remission, right? Since I can't remember your history of tx's for TBDs, I'm thinking in writing, just trying to throw possibilities out there because I know how crippling the fatigue you're describing really is. Don't know if I can claim it as my "worst sx" (there were so many); but holding down a 10 hr per day/5 day work wk job all the while I was in tx completely cratered me a couple of times.

--------------------
ping
"We are more than containers for Lyme"

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keltyl
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Hoosier....Fatigue is my biggest enemy. I do laundry and a few light things in am, then if I do any vaccuming or say clean a bathroom I just can't function anymore.

I do have cfs too, but take B12 shots, LDN, thyroid meds etc etc. NOTHING helps, so believe me you are not alone.

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keltyl
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Yes, what is NMH? If it's low BP, I have that too. I have also tried Nuvigil.
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merrygirl
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I take ritalin and it helps. also B12 shots
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Florence1
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Fatigue is my worst symptom....some days better than others.....

I basically live by clock watching....ie the kids will be home in 4, 3 ,2 1 hrs then dinnere in 4, 3, 2 1 hr and same for bed......I hate it........

I do what I have to and nothing more....i plan on talking to my LLMD monday at my appointment.....

but am really interested in responses here.....

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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Hoosiers51
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NHM is neurally mediated hypotension (spelling?), similar to POTS/dysautonomia.

I am/was a patient of one of the best cardiologists for POTS in the country in Toledo, Ohio.....from what I gather, coffee helps about 50% and hurts the other 50%. They say you need to try it to see if it hurts or helps you. It depends upon what aspects of your POTS are worse. For those who need their blood vessels to better contrict, coffee helps with that.

I have taken a ton of things for Lyme. Right now I am on Bicillin 3 shots per week, with Q/C for babesia (I have tried everything but Lariam), cyst busters, and other meds. I will not share my full protocol, but it is fairly aggressive.

I did NT Factor for a couple months.

I have done IV Doxy and IV Rocephin, but have found Bicillin to be a better solution for me.

ping, what is PSP?

I do methyl B12 shots, and while they help some, it hasn't been quite enough.

I have been reading about Maca root and I think I'm going to try it for energy and hormone balance.

Read the snipet here from Dr. Vinana Muller:

http://www.cheeseslave.com/2008/09/17/maca-for-hypothyroidism-adrenal-fatigue-pms-fibroids-and-menopause/

My Mom has started Maca and her fibroids no longer bother her, and she has more energy.

Thanks for the suggestions so far....still interested to hear more input of course. Taking it all in. Thank you!

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keltyl
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Have you ever had your cortisol checked. They have checked mine 2x, and at 6:30 am mine is sky high. I have been saying for months I think it has something to do with my insomnia. I am on more sleep meds than you can imagine and still can't get more than 5 hrs sleep from them.

Finally at my last appoint, my LD did a ton of bloodwork for different hormones. I really believe hormones plays a big role in my not getting better. Been treating Lyme 19 months and not much to show for it.

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ping
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quote:
Originally posted by Hoosiers51:
...
ping, what is PSP?

Sorry Hoosiers....PSP is the Polarity Signature Programming therapy from Allergie-Immun (Germany). Thought I saw you posting on that thread, but could be wrong...(Got real busy here.) Since you're still on abx tx, I must be thinking of someone else.

Keeping in mind that I'm not a physician, I'm going to go out on a limb here and say that in my experience with TBD (5 yrs tx/3 yrs in remission now) and from talking and dealing with many others like us, the biggest culprit in the fatigue factor SEEMS to most always relate to toxins of all kinds and their effects on individual organs and the entire body as a whole. Whether it's toxins from a die-off, or exotoxins from the living bacteria, molds etc. As I said, I'm not a doc, but toxins seem to play a huge role.

Very sorry to hear that everyone is being put through the ringer; it's a terrible, debilitating sx and people who haven't experienced it just don't understand... But I remember and on occasion, revisit it for a day or 2, unfortunately. When someone says to me, "I can't, I'm just too tired", I believe them...Been there.

--------------------
ping
"We are more than containers for Lyme"

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farraday
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Bicillin is at long last starting to get me out of bed. And just when I start to improve (I've been ill 20+ yrs), Medicare shut me down. My poor husband has made dozens of calls.

He thinks he may have convinced them to pay for it. If not, we will have to find the money somewhere. At $60 a shot, I don't know how people do it!

He did seem to get positive results when he described my diagnosis as "multiple chronic infections"....not "lyme".

I am also feeling better on my new thyroid meds. My LLMD had his pharmacist compound them for me from natural thyroid. It is a larger dose than before. I am even starting to lose weight!

Fatigue has been my #1 complaint over many years. You just can't get your motor running and the least little effort leaves you exhausted. It is the most frustrating feeling in the world....especially for a type A like me. So to be out of bed is heaven!!!

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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canefan17
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I suffered from severe fatigue for many many years.

Starting treating my adrenal glands and the rest is history.

Had no IDEA what kind of impact my adrenal glands played in my daily life (sleep, energy, reducing stress, calming ability, mood)

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Hoosiers51
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My cortisol wasn't too far off, ketyl. It might have even been normal. That's why I'm suspecting it's moreso my female hormones.

canefan17, will you remind me what those adrenal supplements were that are helping you? I think there were 2 of them. I might try them for the heck of it, even though I've tried other adrenal stuff already.

ping, You might have been thinking of me because I am being tested for KPU. I am still waiting on my results and may start that soon.

farraday,

I was gonna mention Bicillin earlier. I think Bicillin seems to be one of the only things so far giving me fatigue improvement. Seriously. Thank God for Bicillin. I think it is responsible for the fatigue progress I HAVE made. It is the only reason I have come out of sleeping all the time and can somewhat pretend to live a life on certain days. So who knows, maybe I need to take 4 shots a week? haha.

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WildCondor
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quote:
Originally posted by ping:
quote:
Originally posted by WildCondor:
The coffee is a bad idea if you have NMH, your cardiologist should have explained that to you. What it does is stimulate adrenaline, which in turn makes NMH worse. To keep up BP most people take FLorinef and a beta blocker. ...

WC, did you mis-state this or am I misunderstanding you? Beta blockers lower BP, not raise it, as I take them & other rx's for severe hypertension. (We are talking blood pressure, yes?) Didn't know they were used to lower BP in any way....(I learn something new every day.)

Hoosiers - Aren't you one of us trying PSP therapy? If so, how many months into it are you? And in remission, right? Since I can't remember your history of tx's for TBDs, I'm thinking in writing, just trying to throw possibilities out there because I know how crippling the fatigue you're describing really is. Don't know if I can claim it as my "worst sx" (there were so many); but holding down a 10 hr per day/5 day work wk job all the while I was in tx completely cratered me a couple of times.

When you have NMH caused by Lyme disease the beta blockers work the opposite way and actually raise your blood pressure. Lyme patients are backwards!

Believe me in med school right now I have to correct some of the people I'm working with about beta blockade and how it works differently for different conditions, Lyme being just one of them. Beta blockers like metoprolol also help the orthostatic tachycardia by making your heart beat nice and slow and steady.

The trick is getting your tilt table test done correctly (including part 2) so the cardiologist can determine what dose of beta blocker you need and if you need florinef or not. Florinef, a steroid but not a steroid like cortisol works by acting on the kidneys to help your body maintain a higher blood volume, thus increasing blood pressure.

Caffeine makes it all worse because it promotes the secretion of adrenaline, irritating the vagus nerve that is already inflamed the Lyme infection(s).

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WildCondor
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Here is the entire article I wrote on the subject. May not be copied/distributed without written permission.


Backwards Blood Pressure
by WildCondor

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. Low impact 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 beta blocker. 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.

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Hoosiers51
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Okay, I believe that about caffeine and the vagus nerve. Even if it is helping for some reasons, it could be hurting for other reasons, etc.

WC, could you PM me the name of your cardiologist? Mine never gave me a tilt table test because I tested positive for dysautonomia via other means. I have hypermobility syndrome, a form of dysautonomia that is genetic. Because I was positive for that, he already knew I would fail the tilt table test so he didn't run it.

But I am interested in using the tilt table test to determine the appropriate dose of beta blocker. I am not sure if my doctor did that, but as far as I know he is no longer practicing medicine anyways due to his own family situation.

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canefan17
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Hoosier,

I take quit ab it of stuff for adrenals (I suffered from adrenal exhaustion)

If you are just looking to support the adrenals.. the basics are...

1) Vit C + Bioflavanoids
2) Pantothenic Acid B5

Also diet plays an important role as well as sleep.

I eat 6 meals per day at times that support my circadian rhythm. This makes going to sleep on time fairly easy.

Sleep at the end of the day is probably the most important thing we Lymies need.

I've spent hours and hours doing all i can to support sleep. I finally have my cortisol low at midnight (thus supporting a good sleep schedule)

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purplemom
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Hoosiers, What was your chest pain like? I have excruciating chest pain that originates from my sternum. It is like I have been brutally stabbed. That an fatigue are my biggest issues--I wish I had answers for you but I am still trying to figure it out myself.
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ping
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WC - Great info! Thanks a million! I guess NMH is the one thing I didn't have with TBD (had everything else in the book).

Hoosiers - Yes, it was H(K)PU I was thinking of... BTW, Canefan does have pretty solid info on adrenals, if you're thinking of going forward with this support. Truly hope your condition is remedied soon; I know you've been battling this a while.

Best to You!

--------------------
ping
"We are more than containers for Lyme"

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TerryK
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For me, the terrible fatigue seems to be related to babesia. 3 things have helped some with fatigue. Paw paw (treats malaria by downregulating atp in abnormal cells), acetyl glutathione and NT factor energy. I am still way below a normal energy level even with these things but at least I'm not bedridden.

I have dysautonomia as evidenced by orthostatic hypotension, tachycardia, difficulty controlling body temp etc.. This is a known cause of fatigue.

For me, the blood pressure problem is caused by a low blood volume which is caused by a low red blood cell mass. Also leaky capillaries.

The doctor who studied me for 2 weeks in an NIH funded NY hospital research facility also did a small study of some CFS patients and found that the majority of them also had the low red blood cell mass which was likely causing their low blood pressure issues.

Florinef expands the blood volume which is why it helps raise the blood pressure. I can't take it though because I also have an edema issue and it causes a huge weight gain in me.

I'm thinking that since babesia lives in the red blood cells and bursts them, it's possible that the low red blood cell mass is caused by babesia or perhaps bart (also affects red blood cells).

Terry

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Hoosiers51
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Thanks Terry, that is helpful.
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TerryK
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Paw paw helped me the most with energy but please be careful if you try it.

I have blood tests every 3 weeks. My red blood cells have been showing abnormalities since we've been treating babesia. No changes were evident when I added the paw paw at 2 2X per day however when I went up to 2, 3X's per day I started to have more red blood cell abnormalities. I cut back down right away and the tests went back to being abnormal in the same way they had been before.

It could be coincidence but doesn't seem like it to me. I'll be talking to my LLMD about that next time I see him. He did not prescribe the paw paw so he may know nothing about it but I'll ask anyway.

Terry
I'm not a doctor

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KYForester
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Fatigue is currently my number one symptom, in front of really bad brain fog, shortness of breath and just a general feeling like crap.
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Elaine G
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How long did you treat your Babesia? and with what?

Debilitating fatigue is the biggest symptom of Babesia.

Fatigue has always been my number one symptom. I started seeing a difference about 6 months into treatment, slowly. Into the 8th month, I almost felt human again. Now in my 9th month and still working at it but there is a big difference.

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TxLymie
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Fatigue is my biggest issue as well.

For years I went to docs to try to figure it out and no one could so I started doing my own research and figured it was adrenal fatigue, low blood pressure, NMH etc.

I've had extremely low blood pressure, low body temp and severe NMH for over 10 yrs. I literally black out if I stand up or get out of bed to quick. I don't faint but everything goes black (can't see) for 1-3 seconds. I'm so used to it I don't even think of it anymore.

My daughter takes ADD medication and long ago I tried it just because I wanted to see how it might affect her. OMG..it was wonderful. I was full of energy. But as someone said, I also would crash big time later so I quit that.

What is NT factor?

And on the adrenal tests are you supposed to have it done at diff times during the day? I'm being tested for that but I don't think it they are doing an around the clock test. I'm wondering if my cortisol levels are whacked up during the night and that is always why I wake up between 2-4am.

--------------------
TxLymie
IgG-Negative
IgM - Postive bands 23 and 41

Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori

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Rumigirl
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Elaine G, with what have you treated your Babesia?

Fatigue is my number one symptom, too---out of many. And I definitely have NMH, and possibly POTS.

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TerryK
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TxLymie -
NT Factor Energy
You will need to get it through a health care provider.
http://www.researchednutritionals.com/store/item.cfm?code=crn101

Hoosiers - The doctor who was in charge of the NIH funded research told me that coffee would help my problem. Part of the problem is related to the sphincters in the veins so it is related to vasoconstriction. I didn't like caffeine because it made my air hunger worse (before I figured out how to deal with it) and caffeine still causes an increase in pulse. I don't use it because of that.

Terry

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MomandDad
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Hi! Hubby has been dealing with this exactly as you discribed (minus period)...

We have been around this block many times and a few things Ive seen over years that did make difference were....raw juicers...time consuming but they did increase his energy over time...got the idea from Montel Williams book...Living Well (also has other helpful hints, I just used what I wanted from book).

Also...Crystal Lite energy powder...to add to water....I know caffeine isnt good but...when you have a brick wall to push through...as my hubby discribes it....it works...after this he is able to get to moving after lunch usually.

I cant feel your exhaustion but I live with it every day....Im so sorry!...

We are now going to a holistic doctor who had lymes and is back at work and he says he is cured...we've got to make some changes but we are willing to do what it takes....take care!...Wanda

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Elaine G
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Rumi,
Malarone and Art then Art-2 (when it became available) has been working for me. This treatment has been tailored specifically for me.

Don't forget everyone is different. It's not a one size fits all type of treatment.

Everything has to be taken into consideration.

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Keebler
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-
I'm not sure about Crystal Lite energy powder - but many of the drink powders - and even some medicines contain aspartame.

but be sure to not consume even a trace of aspartame/Nutrasweet/Equal/AminoSweet. That is neurotoxic and excitatory to the brain.

MSG, too, google for all the names.

Also - ANY artificial dyes can be very dangerous on our nerve cells in the brain - and on the liver.

A stressed liver creates fatigue and brain fog, etc.

Emergen-C is good and comes in many nice flavors.
-

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Hoosiers51
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Elaine,

What was your Malarone dose? I'm assuming you took it daily? Thanks!

I took it for awhile, but I stopped after about 5 months because it didn't seem to be helping much. Looks like I missed the point at which you saw a difference by about a month. It seemed to be making me feel worse though....was it doing that to you before the 6 month mark?

purplemom,
I will come back and talk about the heart stuff....I am having a hard time organizing my thoughts today.

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minerva
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i have always had the cfs/fibro symptoms and with in the last few months developed POTs.


i started taking a supplement herb combo with hawthorn ( it helps regulate the heart and BP lowers if it is high and raises it if it is low) there is a lot of research on hawthorn and heart health.


it also contains cordiceps,chinese saliva root, rishi,l -carnitin and nattokinase. i took 4 a day and with in a week i noticed improvement and now i am taking two a day and feeling much much better.



i am still fatigued in general but the terrible feeling of weakness and dizziness upon rising is gone. i made sure i was drinking enough fluids and had plenty of quality mineral salt and potassium in my diet.
i drink water process organic coffee because it makes me happy! but i wouldn't add too many things that are diuretics.

i always like to try more holistic methods before i try the drug route...less side affects. but one has to do what feels best for them.

i sound like a broken record about checking out "from fatigued to fantastic" jacob teitelbalmbs book but i think that what he recommends to deal with all the symptoms at once to bring the whole body systems up is important in treating such a complicated disease.


he has a great check list in his book and and one on line that you can bring to your doc.

you would need to be treating the lyme as well but things like POTS is part of the overall dysfunction that happens in lyme CSF and fibromyaligia.


i have learned more from his book then most any other book in dealing with all the systemic problems like insomina, brain fog, and now this heart issue. hope you find something that helps. take care

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Elaine G
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Hoosiers
I started with low doses and slowly worked up to high doses. I don't feel comfortable telling anyone what my doses are since this treatment was designed specially for me for my symptoms and
repeated blood results. What works for me could possibly hurt someone else.

So what I will say is that I took Malarone every day, recently changing to every other day. Art or Art 2 is also very important in treatment.

The first 3 months were die offs or herxes every few weeks, always getting shorter. Starting at 3 weeks, then 2 weeks I would have another, lasting about 6 or so days. Then the big one, that was the worse....a 3 week herx that I just layed on the couch and tried to remember that I have to feel worse before getting better. I could have lessened my dosage, my doc will work with me, but I didn't want to. I wanted to put a a big die off and I sure got it. I thought I would die, but I didn't. It got better after that. I would have good days and not so good days. But I started seeing more energy somewhere in the 6th month and it keeps getting better. Don't base my herx or die off to yours, everyone is different. If you were feeling worse, your dosage may have been different and you were still having die offs.

Also into my 3rd month of treatment I started using an infrared sauna. I really believe this helps a lot with detox. This coming from a person who used to think detox was mumbo jumbo. Yes, I have learned a lot.

I think I'm getting to agree with some "cured" members who feel that higher doses are needed to feel well or get cured. But I don't think this is curable in a few months, it takes time.

Well, when you feel better you go out more often and come in contact with more people. Snow birds are in Florida now bringing all the "Northern" germs with them.
I have not had a cold or flu for 3 years. Last Saturday I came down with the Flu, probably H1N1, only guessing but read about symptoms and I have almost all of them. I had TamiFlu on hand so I started that Sunday night. High fever is finally gone and feeling somewhat better today.
But now, I have been off all my meds since Sunday. So, hopefully tomorrow, will restart to build up to dosage. It will be interesting to see how soon that energy comes back. i would think a while since my system has been battling the flu also. We will see. It is like a continuing experiment with TBD.

I guess the best advise I can give anyone would be, if you still have symptoms of Babesia after being treated then you many want to reconsider re-treating. If you don't get rid of the symptoms you will never be free of this disease.

Hoosiers, if you want to pm me, we can talk about this but I still won't release my dosage amounts. Not fair to my LLMD and not fair to someone who it may hurt. Blood work is so important when it comes to dosage.

I am not a medical person, these are strickly my views and personal opinions.

I sure hope I didn't spit, sneeze or cough on anyone, don't want to spread my flu.

Good health to all of you,
Elaine

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Bugg
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Are you low in glutathione?
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LittleLymie19
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Hi Hoosiers,

NMH, dysautonomia, neurocardiogenic syncope, and POTs are my worst symptoms, and they definitely bring on debilitating fatigue. I don't get up and walk around my house much at all anymore, aside from getting food. It used to be too hard to get food for myself, it was so bad, but I believe I'm on the track to recovery now, and though it seems excruciatingly slow, I see little improvements here and there.

My doctors and I have found that mold, yeast and fungus are one of the main causes of these issues for me. We tried conventional routes for treating it with pharmaceuticals, but it caused a flair so severe I kept ending up in the emergency room and urgent care. I'm now treating unconventionally.

I'm wondering if you've tested your house for mold? I noticed a huge improvement with this issue when we started cleaning up our house. Before we did, I was at the point where I thought the fatigue and autonomic issues would kill me! Now that we're cleaning it up, I'm noticing changes in my body and I can see a light at the end of the tunnel.

I'm also wondering if you've tried anything long term for yeast and fungal infections? I think people don't realize that Candida is not the only fungus to be concerned about, and long-term antibiotics isn't the only cause of yeast issues. I certainly didn't realize this. I think this is an even larger problem for me than lyme is.

How about detox? Do you consistently use products like those from Pekana labs, etc?

Sorry if any of my suggestions seem way off base. I just wish I could help you! You've helped so many people here, and have always offered so much support. It breaks my heart to hear that you're struggling!

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Hoosiers51
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Bugg, Yes, I am low in glutathione. I tried a transdermal prescription, but it didn't help much. Since I don't have a picc or access to anywhere to get IV glutathione, I don't do IV gluta.

I guess I should probably be taking the low glutathione more seriously. I've just had so much on my mind. I think I've tried NAC in the past and I don't remember it helping, but there are other things I haven't tried that are precursors. What do you recomend?


LL, I'm so glad to hear that you feel you're making some slow progress. I am living in a new place and am 99% sure mold isn't an issue here, because it was a criteria before I moved in. I was doing the Pekana products but have stopped. I think I am going to restart them.

That is a good suggestion about long term fungal infections. What do you think would be good for that? Something like Olive Leaf Extract? Or moreso prescriptions? I guess I could ask my LLMD.

Thanks!

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Bugg
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I personally didn't like NAC but others on this board have taken it to raise their glutathione levels.

I have successfully used whey protein to raise my levels. When you first start taking it, you may get an initial "detox" reaction for the first couple of weeks. Then, that goes away....

It has really, really helped with my all-over muscle aches and with stamina....I think that coupled with Vitamin D is helping me have better stamina and live with much less pain...

Which lab tested your glutathione levels? Do you remember?

In my humble opinion, while IV glutathione is great, if you're chronically low on glutathione you need to be doing what you can on a regular basis to keep the levels up....(ie take NAC or whey protein on a regular basis)....

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Sammi
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Hoosiers, how long ago did you have your cortisol and thyroid levels checked?

Fatigue has always been one of my worst symptoms also. I had saliva testing done of all hormone levels (cortisol, estrogen, progesterone, testosterone, DHEA). All of them were low. Addressing this has helped.

I also have Hashimoto's Thyroiditis and finally have a doctor who is treating it properly for me.

Another thing that has helped me is increasing my Vitamin D level which was very low initially. How is your level?

I have also had a severe case of Babesiosis. For me this causes more fatigue than the other diseases. When the Babs symptoms improve, so does the fatigue. Are you still treating it?

If you have not had all hormone levels checked or if it has been awhile since you did, I recommend having this done.

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springshowers
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hoosiers

You say you have moved and your new place has no mold. How long has it been since you moved in ? And are you noticing a difference?

Did you verify your old place had mold?

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Amelia
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Thank you for all the great info. in this thread. I wanted to move it up again....
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canefan17
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Eleutherococcus (Siberian Ginseng)

www.woodlandessence.com

It's a tincture.
Use 15-30 drops once @ breakfast and once @ lunch.

Thank me later ; )

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Hoosiers51
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Thanks for bumping this thread.

Going the hormone route has not really panned out for me yet. There are still things I haven't tried, but so far, hormones don't seem too far off in testing, and treating despite the normal tests hasn't helped in the past.

BUT...I do have some interesting and possibly exciting news. I finally decided to see a "sleep specialist" (a type of MD), and I had a sleep study done (overnight test for apnea and the daytime narcolepsy test...in case the fatigue was atypical narcolepsy).

Shockingly (because doctors tell me I don't fit the normal picture of an apnea patient, so much so they almost didn't check for it)....I tested positive for moderate apnea. They told me it could be accounting for my fatigue during the day.

I haven't started the cpap yet, but I did the second overnight study to calibrate the machinery. I am now just waiting on insurance issues before I can start using the cpap.

So I will come back hopefully and update if the equipment helps me with daytime fatigue. If I don't update here, I'll post it somewhere else on LN if it works.

I am young, female, not overweight at all (normal weight, petite) and I don't snore that anyone knows of. So no one would have suspected this...but it can be genetic. So I would encourage those with unresolved fatigue to check this route out.

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kellephant
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i have the same problem!

yesterday i slept 20 hours without waking up once! today i slept 13... i pretty much never sleep less than 12 hours a day.

i'm so discouraged, because im 22 and have no energy to do anything [Frown] i haven't in years!

vitamin b-12 shots help some... but not nearly enough!

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Hoosiers51
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Try the sleep study?
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kellephant
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do you actually have to sleep during a sleep study?

i don't think i could fall alseep in that position...

i just wish everything wasn't so expensive. there are so many tests i'd like to have done!

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Hoosiers51
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well, I wasn't allowed to take sleep meds, but I think it was because I was doing the narcolepsy test the next day.

I think "maybe" if you are only doing the apnea test, you can take whatever you need to take to get to sleep.

During my second overnight study, when they were calibrating things, they let me take Ambien and Xanax. They really just need you asleep for a few hours, I believe. Though you may want to check.

I think it would be pretty expensive without insurance, so if you are uninsured.....that could be tough.

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kellephant
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i honestly can't sleep anywhere besides my own bed. i have been awake for 56 hours straight while travelling once because of this issue... even though i took meds that would have normally made me drowsy.

i just know my body, and i think it'd be HIGHLY unlikely for me to sleep... i'd be too uncomfortable and anxious :/

i do have insurance... but it's lousy! i pay $160 to see a doctor for something as simple as a cold... so i imagine a sleep study wouldn't be covered.

i really think i just need a higher dosage of thyroid medicine. right now i'm on the low end of the normal range. i believe my body would function sso much better on the higher end... but doctors won't listen. *sigh*

my LLMD says i have myxedema, which from my understanding is from hypothyroidism... yet my other doctor says my thyroid is "fine" now. i still have ALL the symptoms though... arg!

before thyroid meds i slept 17 hours a day on average... after meds i now sleep 12... so thyroid meds have helped my energy level... just not enough!

i wish i could write my own prescriptions [Razz]

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Haustinc
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I'd like to bump this up-

Still looking for the most experience doctor to properly treat me so I don't feel I'm just indefinitely suppressing symptoms. Main problem is extreme fatigue, and the foggishness that lack of energy causes (And of course sleep problems)-

Can anyone PM with a specific doctor or route to research this treatment?

Is there anywhere I can get a tilt table test done with insurance?

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canefan17
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Haustic

Herb Pharm makes Eleutherococcus (Siberian Ginseng)

You will start to feel a difference almost immediately.

Take it for 30-60 days then take 2 weeks off.
Continue with this rotation until you feel your immune system has bounced back.

Eleutherococcus is a big time adrenal support.
It's an adaptogen and has immune benefits.

Powerful stuff

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Keebler
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-
Eleutherococcus - and all the other adaptogens - are discussed in the ARENAL LINKS in this thread:
----------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP - Links to articles & supplements
-

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Keebler
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Haustinc,

The most important thing is to have a good LLMD.

Treating infection is the top priority. Supporting the body (adrenals, liver, kidneys, heart, nerves) also matters greatly but treating infection is the key, along with support.

Before a Tilt Table Test would be ordered, you may want to study the posts here:
------------------

CARDIAC THREAD

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

Topic: To everyone with cardiac symptoms please read !

===============================

Along with your a LLMD, you might consider a LL NDs for support measures:
-------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/13964?

Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.

Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.

Includes many articles and books on complementary / integrative methods - & RIFE links.
-

[ 10-04-2010, 06:39 PM: Message edited by: Keebler ]

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Keebler
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-
I talk a lot about liver support. But that may not be enough to compensate for "Fatty Liver disease" that can accompany any number of chronic infections.

It's a vast topic but this I have learned: if the liver is stressed at all, fatigue is inescapable. Over time, and with support some damage can be reversed but it's not a guarantee.

So often, I'm quick to talk about adrenal support, and liver support but it's also important to search "Fatty Liver" and find out how that affects energy -- and what can help.

Even skinny people can have "fatty liver" - anyone can. But there are things that can help (diet, supplements, Tai Chi) . . .

Hepatitis (which causes fatigue) affects about 20% of lyme patients, according to this author (who also details so many other considerations of fatigue):
-------------

http://www.angelfire.com/biz/romarkaraoke/whento.htm

When to Suspect Lyme - by 
John D. Bleiweiss, M.D.

==============================

Fatigue is a hallmark of porphyria, a set of liver enzyme disorders (or deficiencies) that can be worsened by infection - and there are things that can help:
----------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA
-

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Keebler
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-
One more consideration regarding fatigue: vestibular involvement.

Lyme/TBD, certain Rx, and liver stress can really clobber the inner/middle ear (vestibular) system. Here are just some of the ways that can affect not just our ears, but our vision and our balance. When any of that is off kilter, fatigue follows.
----------

http://www.vestibular.org/vestibular-disorders/symptoms.php

VESTIBULAR SYMPTOMS

========================

More detail and what can help (liver support links included here):

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
-

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tiredmama
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Just popping in to say, "YES" on the fatigue issue being #1 symptom.

Yes, worse a couple weeks before period and right before/during.

All hormones were "off enough to treat" and some were way off, including estrogen, testosterone and cortisol. Progesterone, too.

Thyroid meds haven't helped. Fatigue comes and goes withing a few weeks. Provigil didn't help AT ALL on those fatigued days.

Cymbalta has helped a little (I think)

Yeast can be a big issue in fatigue, too. And maybe other viruses that are secondary to lyme, but their main thing is to make you tired...like EBV. Answers sometimes don't help, but nice to know you're not crazy.

Hope you find relief.

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