After two years and FOUR LLMD's , all of which told me that the reason why I get sick when walking around is due to herxing ( yeah ok)
I finally found out I have this awful symptom.
Question: How many of you with it have babesia? I think I am finding out it is more common with babesia.
And is it managed yet? , ie.. can ya get up and walk around or are you still resorting to bed hugging and wall hugging like me?
Thanks for any input! Im gonna go walk around and herx now.
Do you mean orthostatic hypotension?
If so, then I have it. I think, but am not sure, that I may have had Babesia because I dealt with the nightsweats for a long time. Actually, I haven't had any since this past summer when I did a long go of Olive Leaf. Maybe it was babs, maybe it was not but whatever was causing my nightsweats seems to have gone away with the Olive Leaf treatment. I pile the covers on because I get so cold but wake up a lot of days with the room being really warm. If that had happened in the past I would have been drenched but now, I just wake up hot, not sweaty and soaked. I hope it stays like this!
As for how the orthostatic intolerance affects me...I can walk around pretty well. It just depends on how heavy my neuro symptoms are in my legs on that particular day. So, walking is generally not too much of a problem if I don't overdo it.
My orthostatic intolerance kicks in when I try to remain still to do things. I can't stand or sit for very long at all without feeling like I"m really running low on oxygen and I can't think. On a good day, it may be almost a minute before I can feel this stuff coming on. On bad days, like yesterday, it seems to be almost immediate and I can't accomplish anything, have zero energy.
I wish I could help you more but sounds like you need a tilt table test to diagnose this condition, not an LLMD. I believe this is the damage caused initially from the infection and an LLMD is not going to be able to fix it or clear it with an antibiotic. I wish I knew how to fix it, it is the main limiting factor in my life and the source of my fatigue.
There are days I have glimpses of how I used to feel but they are only glimpses as I have never experience one single "normal" day since I had brain inflammation 3.5 years ago. From what I have heard, it is the brain inflammation which throws off the centers regulating this function, the actual opening and closing of the valves in the blood vessels. I've heard that and I've heard the vagus nerve. I don't know exactly what it is but I'd love for it to go away and never be heard of again!
So, don't think I helped you much but thought I'd let you know I can relate to what you are struggling with. I stay in the bed most of the time now but I don't lurch against the walls now, like I did in the beginning. Hopefully, that will go away for you someday as well.
Angie
The reason I think so is because babs and malaria are closely connected and my vertigo is treacherous every other day, just like malaria symptoms, plus I got better on my one month of mepron.
It is interesting that we hve come to the same conclusion!!! and we both have had this awful symptom for so long!
love to talk to you soon.
Frances
Never understood why meds for candida would make me so dizzy but if candida meds can affect babs, then you will herx. (I have babesia).
I have never heard of olive leaf treatment for babs, better than mepron, artesminin? Is it used for candida? why did you take it?
Is this making any sense at all?
Thanks
Lymelady
I ended up in the ER with tachycardia and elevated BP. I can remember months and months of feeling like I was going to faint.
They did a tilt table on me, which I passed....but during the test, the cardiologist found out the nurses had told me to stop the Inderal LA for only 24 hrs prior to the test.
He said I should have been off it 4 or 5 days since it was long-acting. So the test was null and void. Anyway, I began to slowly improve and decided not to re-do the test. I could have made them pay for the 2nd one, I'm sure.
I hope you start feeling better soon. Are you still on babesia meds?
------------------
oops!
Lymetutu
I could never stand in one place very long without feeling like I was going to faint.
I was at the Mall last night and was fine.
And was only treated for Lyme and Bart.
So go figure..
------------------
Julie G.
___________
lymeinhell
Yes I meant hypotension, I cant spell
Im not using a LLMD to diagnosis it, I quit that route as far as that and went to a neurologist that specializes in autonomic disorders, so Im in good hands.
Im not on babesia meds, yet. Unfortunately, i have a slight inability to take ANY medication right now and Im hoping once I get the OH treated, that symptom will flare down as OH can cause one to not tolerate meds.
So for now, Ihave not been on ANY abx and oddly, feel better.. except thsi stupid OH.
My sx were basically passing out if I stood for long-- this occurred unpredictably and lasted several years; loss of balance and vertigo when walking (mostly) and sitting --this lasted for several months; very rapid heartbeat no matter what position I was in, also occuring unpredictably and over the same time period as the passing out stuff.
The worst pretty much went away before I started babesia and bart tx, although I was dizzy from time to time until I'd had the complete babs tx. So I don't know if it was a yeast issue, an LD issue, babs, a combination, or what.
It's miserable, and my sympathies to all of you experiencing it.
I was an avid wall-hugger as well.
Mine was confirmed via a Tilt Table Test so the docs would quit questioning whether I was faking the near black out spells. This was before Lyme diagnosis.
Once I had the Tilt Table Test they put me on Proamatine which raises the blood pressure. It helped for a while.
Never diganosed with Babesia. And after two years of abx for Lyme I was able to wean off the Proamatine.
I still get light headed, but I'm not blacking out like I used to prior to the Proamatine and Lyme treatment.
I'm amazed that you could handle the ProAmatine. I tried it and my heart would not stop racing. I got rid of it...before it costs me a heartattack! Scary stuff! - at least for me!
minoucat,
What treatment were you on that seemed to resolve the problem??? I'm very curious. My problem is a chronic, all day, every day problem. I'd so love for it to be gone...forever!!!
lymelady,
I was taking the olive leaf for Lyme. I went on a long break from antibiotics and have been trying natural treatments to see if anything works. I did olive leaf for a long time and it seemed to mildly keep the lyme in check. I didn't take it for Babs and I don't know if I ever had Babs but I did have a lot of problems with the nightsweats and was put on Mepron treatment a time or two. It helped with some of the symptoms but the nightsweats always seemed to come back here and there.
However, after months of olive leaf...I haven't had any nightsweats. I think the last time may have been July or August. I hadn't really thought about it until this post. It may mean nothing, the sweats may be back sometime down the road but if they do come back I think I'll try the olive leaf again since it obviously did something positive even though it did not clear me of lyme. Who knows, maybe I just didn't take a high enough dose for lyme or maybe the brand I was taking was weak and not as effective as it should have been for the dose I was using. I'll probably try again in the next month or two.
Angie
Mino- very intersesting! I wish mine would go away. Im pondering a cocktail of draino and bleach. Im sure that will fix my OH right up.
Tabby, glad to hear you do a bit better with the meds, thats what Im hoping for.
Then, vertigo and dizzyness set in and I could not function. I did walk right into walls and could not drive even a mile.
I went to a Neurologist and an ENT. The ENT put me on Meclizine and gave me exercises to do, which helped. The Neurologist did squat. She did a Lumbar Puncture and a greuling 6 hour IQ test. I think she thought I was just stupid because I couldn't look at the page of questions without it making me feel dizzy. She dismissed me with a diagnosis of Cognitive Impairment and told me to see a therapist.
Finally, my Lyme MD decided (at my insistence) to treat for Babs. Within 4 weeks of Mepron and Zith I was walking a straight line.
I know part of the drunk feeling was from Candida but, I am sure that the Babs protocol really did the most to help clear this up. I was also on IV Rocephin, which (despite the horrendous herxes) did help a lot.
Mind you, I am still on Mepron (9 months later) because the hypotension does come and go. My MD does not want me driving on the highway for fear that I will have an "episode" and will commit an accidental homicide.
Hope you are getting the help you need. The vertigo exercises do help.
Bc
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Orthostasis means upright posture, and hypotension means low blood pressure. Thus, orthostatic hypotension consists of symptoms of dizziness, faintness or lightheadedness which appear only on standing, and which are caused by low blood pressure. Only rarely is spinning vertigo caused by orthostasis.
Symptoms that often accompany orthostatic hypotension include chest pain, trouble holding the urine, impotence, and dry skin from loss of sweating.
What Causes Orthostatic Hypotension ?
Blood pressure is maintained by a combination of several things. The heart is the central pump, and a weak or irregular heart can cause orthostasis. Conditions such as arrhythmia, heart failure, deconditioning, and pregnancy are examples where the heart may not be up to the task of providing an adequate blood pressure.
The heart pumps blood, and if there is too little blood volume (anemia, dehydration, dialysis), the pressure drops. The blood vessels in the body also can squeeze (constrict) to raise blood pressure, and if this action is paralyzed, blood pressure may fall. Numerous medications affect blood vessels including most of the medications used for blood pressure, and many of the medications used in psychiatry and for anginal heart pain. Heat, such as a hot shower or from a fever can also dilate blood vessels and cause orthostasis. The nervous system senses and responds to regulate blood pressure. If something is wrong in this control system, blood pressure may fluctuate.
Blood pressure is usually lowered (in persons with orthostasis) by upright posture, food, infection, hyperventilation, hot weather, and lifting of heavy objects. General anesthesia may be unusually dangerous due to blood pressure fluctuations (Bevan et al, 1979).
Vestibular disorders may interact with blood pressure and heart rate control. The vestibular system is one source of information about uprightness (the otoliths), there are some effects of vestibular stimulation on the heart (Radtke, 1992), and there are some patients who have a combination of autonomic and vestibular symptoms.
Neurological disorders can also be caused by orthostasis. This usually takes the form of a TIA precipitated by a blood pressure drop (Brozman et al, 2002).
Diagnosis of Orthostatic Hypotension
Syndromes with orthostatic dizziness or lightheadedness, not associated with low blood pressure include:
Positional orthostatic tachycardia (POT) syndrome. Here, the pulse races on standing.
Low CSF pressure syndrome
Primary orthostatic tremor
Positional vertigo (i.e. BPPV)
Syndromes with orthostatic hypotension that may be diagnosed include:
Cardiogenic (heart related) orthostatic hypotension. In this instance the heart doesn't respond to demands for greater pumping and blood pressure drops.
Low blood volume (e.g. anemia, dehydration, dialysis)
Medication related (usually too high doses of blood pressure medications or medications for depression)
Neurogenic orthostatic hypotension
Sensory neuropathies (diabetes, alcohol, syphilis, Holmes-Adie syndrome, carotid sinus obliteration by endarterectomy, Riley-Day syndrome)
Central types:
MSA - multiple system atrophy or Shy-Drager, Parkinsons, dementia with Lewy bodies. Orthostatic hypotension is nearly universial in MSA, present in about 50% of patients with DLB, and about 5% of patients with Parkinson's. (Thaisetthawatkul et al, 2004). However, since Parkinsonism is by far the most common disorder, there may be as many patients with orthostatic HPN and Parkinson's disease as any of the former.Patients with MSA have intact sympathetic noradrenergic innervation.
Medullary strokes or injuries (rare)
Wernickes syndrome(rare, related to thiamine deficiency)
Output types:
Peripheral neuropathy, especially diabetes and amyloidosis
Spinal cord lesions
PAF - pure autonomic failure or idiopathic orthostatic hypotension. These patients have loss of cardiac sympathetic neurons, and in particular have loss of sympathetic noradrenergic innervation.
Parkinson's disease (post-ganglionic sympathetic denervation). These patients also have loss of cardiac sympathetic neurons.
Dopamine beta-hydroxylase deficiency (hereditary, very rare -- has very high serum dopamine, often ptosis (droopy eyes) and hyperextensible joints. Prolactin may be high)
Unknown type
Orthostatic intolerance in chronic fatigue syndrome (this mainly seems to be a syndrome of adolescents)
Orthostatic intolerance associated with basilar migraine
The diagnosis of orthostasis is made by finding that the systolic/diastolic blood pressure drops at least 25/10 mm mercury on going from lying to standing. The pulse should be checked also. The lack of a pulse response increase when the blood pressure drops implies a neurological cause. An excessive pulse response is termed "POTS" or positional orthostatic tachycardia syndrome. POTS can be associated with considerable disability (Benrud-Larson et al, 2002). Note that pulse can increase due to anxiety and deconditioning as well as autonomic disorders and considerable caution must be used in making this diagnosis.
Once an orthostatic syndrome is determined, additional tests are used to determine why the blood pressure isn't properly regulated.
Laboratory TESTS for orthostatic hyptension
TEST RATIONALE
CBC (blood count) Check for anemia
EKG, other heart tests Check for weakness or irregularity of the heart
CT or MRI scan of head Exclude other nervous system disorders such as multiple system atrophy (MSA)
Autonomic testing (a battery of tests often including tests of blood pressure control and sweating). Tilt table testing, Valsalva testing, and QSART are often included. Localize lesion in nervous system
Plasma norepinephrine (NE) (supine and standing)
Serum dopamine.
Low levels indicate post-ganglionic level lesion (vasoconstrictors like midodrine will not work in this case). Patients with orthostatic hypotension associated with Parkinsonism have low plasma levels of NE while supine, and thus should not respond to Mitodrine. Patients with MSA have normal levels. See Goldstein (2003). Patients with dopamine beta-hydroxylase deficiency have very high dopamine levels.
Glucose tolerance test Diabetes
RPR or FTA Syphilis
Urine porphyrins Porphyria
Serum electrolytes Dehydration
Serum creatinine and BUN Kidney failure
Gastric and small bowel motility studies Detect diabetic gastroparesis and related conditions.
Rectal biopsy If amyloid is suspected
Not every test is needed in every situation. More tests may be recommended based on the results of the previous tests. Tilt table tests are not needed in orthostatic hypotension, but may be indicated in persons with fainting (syncope).
CASE EXAMPLE:
A 57 year old man presented complaining of lightheadness on standing and a pressure sensation in the back of his neck (on standing). Other medical problems included a low thyroid. Blood pressure was 90/65 standing vs 130/80 supine (on medication). This documents a significant orthostatic hypotension. A sweat test showed about 50% anhidrosis. Norepinephrine level was about 30 units lower supine than upright. He was diagnosed as having neurogenic orthostatic hypotension. Present treatment includes Proamatine (mitodrine) 10 mg TID, salt supplements, and erythropoetin.
TREATMENT
Note that neither drug nor non-drug treatment can do as good a job as a well working body. All of the strategies outlined in the next section are intended to alleviate symptoms, but they are unlikely to cure orthostatic hypotension.
Non-Drug Treatment for Orthostatic Hypotension
Generally it is best to start with non-pharmacological treatment, and proceed to drug treatment only when this fails. Note that measures such as voloume expansion with increased salt and fluid, moderate exercise and tilt training are relatively safe but their effectiveness has not been demonstrated by controlled trials (Kapoor, 2003). Nevertheless, we think it is reasonable to give these things a try.
Use an automatic blood pressure cuff (about $30 at Walgreens or Radio Shack). Check blood pressure daily, preferably standing and lying flat, and record it. Also check blood pressure when you have symptoms.
If possible, eliminate medications that lower blood pressure (usually blood-pressure or heart medications). Check with your doctor first, however, to be sure that this is safe.
Take in extra amounts of salt - about 10 gm/day total. If you start to have trouble breathing or get excessive swelling at the ankles, you may have to use less than 10 gm.
Wear Jobst stockings (tight custom made leotard like garment -- worn by both men and women).
Sleep with head of bed elevated about 15-20 degrees (4-6 inches). This maneuver increases blood volume and, after a few days, is helpful. It is also helpful in that it may reduce supine hypertension( sometimes blood pressure is too high lying flat, and too low standing up). Try to be up during the day, not lying in bed. Reconditioning may be helpful for persons who have been on bed rest for long periods of time.
Eat frequent small meals (because eating lowers blood pressure). Avoid sudden standing after eating.
Avoid straining at stool (because this may lower the blood pressure)
Avoid hot showers or excessive heat. Use air conditioners.
Get up gradually in the morning. Take 5 minutes to get up and use support. Perform isometric exercises before moving about.
DRUG TREATMENT for Orthostatic Hypotension
Certain medications may be helpful, usually as a combination. Most useful drugs are Florinef (fludrocortisone), erythropoetin and Midodrine.
Two strong cups of coffee in the morning
Fludrocortisone (Florinef) forces more salt into the bloodstream, 0.1 mg daily starting dose. Blood pressure raises gradually over several days with maximum effect at 1-2 weeks. Alter doses at weekly or biweekly intervals. Hypokalemia (low potassium) occurs in 50%, and hypomagnesemia in 5%. These may need to be corrected with supplements. Florinef should not be used in persons with CHF (congestive heart failure). Florinef does not work in the orthostatic intolerance syndrome of chronic fatigue syndrome (Rowe et al, 2001). Headache is a common side effect.
Effexor (an antidepressant which raises blood pressure as a side effect).
Inderal and other beta-blockers (small doses are used for positional-orthostatic-tachycardia syndrome (POTS), start inderal at 10 mg/d, increase to 30-60 mg/d over 2-3 weeks. Other useful agents are Nadolol (10 mg qd), Pindolol (2.5-5 mg 2-3 times/day) and atenolol (25). Several controlled trials did not show these agents to be effective in preventing syncope (Kapoor, 2003)
Motrin or Indocin (blocks blood-pressure lowering effects of prostaglandins).
Midodrine. An alpha-1 agonist. Causes increased blood pressure, vasoconstriction, pupil dilation, and "hair standing on end". Other common side effects are paresthesia of the scalp or itching. Usual doses are 2.5 mg at breakfast and lunch or three times daily. Doses are increased quickly until a response occurs or a dose of 30 mg/day is attained (Wright et al, 1998). Midodrine does not cross the blood-brain barrier and it is thus not associated with CNS effects. In theory, Mitodrine might work for the orthostatic hypotension of MSA (or Shy-Drager), but not that of Parkinsonism. Most patients on Midodrine also take Florinef (see above). Mitodrine has been shown to be helpful in controlled trials (Kapoor, 2003).
Erythropoietin. This agent is used if there is also anemia and other measures have failed. Doses of 25 to 75 U/kg TIW are used, by injection.
Methylphenidate 5-10 mg orally 3 times/day given with meals. An amphetamine -- side effects may include agitation, tremor, insomnia, supine hypertension.
Ephedrine 12.5-25 mg orally three times/day. Side effects may include tachycardia, tremor and supine hypertension.
Fluoxetine 10-20 mg daily. Side effects may include nausea and anorexia. Paroxetine (Paxil) has also been shown to reduce syncope at 2 years.
Phenobarbital may improve POTS.
Desmopressin. This analog of vasopressin is used as a nasal spray. Low blood sodium is a possible side effect.
OTHER TREATMENTS:
Atrial pacing can be considered when the heart rate is very low. However pacing has been reported not helpful in treatment of recurrent vasovagal syncop (Connolly et al, 2003)
3,4 Dl-threo-dihydroxyphenylserine (DOPS), an artificial amino-acid, may be helpful in certain situations (Freeman, 1996) including dopamine beta-hydroxylase deficiency and post-prandial hypotension from various etiologies.
REFERENCES:
Benarroch EE, Schmeichel AM, Parisi JE. Involvement of the ventrolateral medulla in parkinsonism with autonomic failure. Neurology 2000:54:963-968
Benrud-Larson L and others. Quality of life in patients with postural tachycardia syndrome. Mayo Clin Proc 2002:77:531-37
Bevan, D. R. (1979). "Shy-Drager syndrome. A review and a description of the anaesthetic management." Anaesthesia 34(9): 866-73.
Brozman B and others (2002). Postural vertigo and impaired vasoreflexes caused by a posterior inferior cerebellar artery infarct. Neurology, 59, 9, 1499-1500
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Radke A, et. al. Evidence for a vestibulo-cardiac reflex in man. The Lancet (356), 736-7
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Stewart JM and others. Orthostatic intolerance in adolescent chronic fatigue syndrome. Pediatrics 1999:103:116-121
LaMaca et al. Cardiovascular response during head-up tilt in chronic fatigue syndrome. Clin Physiol 1999:19:111-120
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Thaisetthawatkul P and others. Autonomic dysfunction in dementia with Lewy bodies. Neurology 2004:62:1804-1809
Yarrow and others. Force platform recordings in the diagnosis of primary orthostatic tremor. Gait and Posture 2001:13, 27-34
Related Web pages www.dynakids.org
ninds orthostatic hypotension information page (National Institute of Health)
Relevent Books (with links to Amazon.com)
Orthostatic Disorders of the Circulation: Mechanisms, Manifestations, and Treatment by David H.P. Streeten
Circulatory Response to the Upright Posture by James J. Smith (Editor)
Journal of Applied Physiology, Vol 68, Issue 4 1458-1464, Copyright � 1990 by American Physiological Society
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ARTICLES
Head-down bed rest impairs vagal baroreflex responses and provokes orthostatic hypotension
V. A. Convertino, D. F. Doerr, D. L. Eckberg, J. M. Fritsch and J. Vernikos-Danellis
National Aeronautics and Space Administration, Space Center, Florida 32899.
We studied vagally mediated carotid baroreceptor-cardiac reflexes in 11 healthy men before, during, and after 30 days of 6 degrees head-down bed rest to test the hypothesis that baroreflex malfunction contributes to orthostatic hypotension in this model of simulated microgravity. Sigmoidal baroreflex response relationships were provoked with ramped neck pressure-suction sequences comprising pressure elevations to 40 mmHg followed by serial R-wave-triggered 15-mmHg reductions to -65 mmHg. Each R-R interval was plotted as a function of systolic pressure minus the neck chamber pressure applied during the interval. Compared with control measurements, base-line R-R intervals and the minimum, maximum, range, and maximum slope of the R-R interval-carotid pressure relationships were reduced (P less than 0.05) from bed rest day 12 through recovery day 5. Baroreflex slopes were reduced more in four subjects who fainted during standing after bed rest than in six subjects who did not faint (-1.8 +/- 0.7 vs. -0.3 +/- 0.3 ms/mmHg, P less than 0.05). There was a significant linear correlation (r = 0.70, P less than 0.05) between changes of baroreflex slopes from before bed rest to bed rest day 25 and changes of systolic blood pressure during standing after bed rest. Although plasma volume declined by approximately 15% (P less than 0.05), there was no significant correlation between reductions of plasma volume and changes of baroreflex responses. There were no significant changes of before and after plasma norepinephrine or epinephrine levels before and after bed rest during supine rest or sitting.(ABSTRACT TRUNCATED AT 250 WORDS)
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V. A. Convertino
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[This message has been edited by sizzled (edited 17 January 2005).]
Ginseng increases blood pressure and helped even out my hypoglycemia.
I also stick to a fairly strict Atkins-type diet and found it helps tremendously.
Having had mild anemia and also being a heavy sweater, I think, predisposed this problem in me.
Having Babesia might compromise your blood cells, cause you to lose minerals and salts and thus, dehydrate you. I don't know if this makes any sense but hope it helps.
I use garlic salt liberally and drink plenty of mineral water. I also am trying a probiotic with potassium, ginseng and herbs in a liquid. It seems to be helping.
quote:
Originally posted by sizzled:
Oh, the first article stated that if you prop your head up
------------------
Lyme Disease Information Online:
http://www.lymeinfo.net
Lyme Disease Information By Email:
http://groups.yahoo.com/group/lymeinfo/
I know OH has been brought up a couple times by various Drs for me over the past years...thanx for bringing it up in the context of lyme.
The more I learn, the more I feel prepared to fight this thing (and whatever co-infections tagged along!)
Might it not be due to orthostatic hypotension alone?
Hypoperfusion of the cerebral cortex can be due to impairment of circulation from infection and could be made worse by posture?
Just a guess.
Thanks for all that information. I copied it over to a word document and will print it out and review it in the near future. There should be some good information in there.
Oh, and I'm in agreement with Cheryl about not elevating the head of the bed. From what I have read, this is a bad idea for anyone with this problem since we are already having problems with the return of blood flow to our brains due to the effects of gravity. The last thing that any of us should do is make it harder for the blood to return to our brains from the rest of our bodies, esp at night, when we are asleep because we likely would not realize that we were having trouble and it could result in more harm than good.
However, thanks for trying. Other than that little blurb, all the rest looks to be very helpful.
Angie
You definitely have a point, as the two conditions are connected. We need more blood! The worsened symptoms, though, were the hypotension and tachycardia.
Cheryl
quote:
Originally posted by sizzled:
Cheryl, sorry you experienced a worsening effect!Might it not be due to orthostatic hypotension alone?
Hypoperfusion of the cerebral cortex can be due to impairment of circulation from infection and could be made worse by posture?
Just a guess.
[This message has been edited by Cheryl (edited 18 January 2005).]
Thanks for your replies. Im trying to remember all who replied
Beach, our symptoms are very closely related. Sizzled, thank you for the info. I had just found a very similiar article the same day you posted that one.
I know someone mentioned POTS- I dont have POTS, I have OH.
I have tried sleeping with my head up... not a good thing for me LOL
I also see that they mention coffee. That to me also makes no sense since Coffee is a diruetic. ( Spelling) and can induce OH.
I guess its all dependant on the indivual as it so says.
I am beginning to think that babesia or yeast is at the core. MOre so yeast. I didnt start out with OH, but I surely ended up with it
Thanks for all your replies. If this posts more than once, Its cause LYmenet is telling me I cant post within 60 seconds of my last post. THis is the first time I posted in two days
BTW, I had an OH test done in the hospital. You have to stay overnight. You have your blood pressure taken while awake every 2 hours. First ist is lying down, then sitting, then standing up. This is repeated when you are (trying to) sleep every 2 hours and, again the next morning.
You also have your blood taken during the day, at night, and again in the morning. This is to check hormone imbalances.
The test shows one of two things: Either your cortisol levels are out of wack or you have OH. In my case, the cortisol was borderline ok but the BP was way low. I suppose you could have both.
An Endocrinologist (sp?) can order the test to be properly done.
Just a thought - could give you some further answers.
Bc
My neuro is sending me out for a tilt table test to be doen through a cardiologist. I also just got a message on my answer machine this morning that they want me to also consult a well known endocrinologist. ( too bad I've already seen this guy and he can go in the duck pond NOW)
LeapinLizards; Im very very glad that your LLMD tested yuo for this, with the blood pressure. You dont have to be a LLMD to test for this at all, all ya need is a blood pressure machine.
Im a little bit irked this wasnt caught two years ago. More than irked. But, I'll get over it. I just want to walk again,.
Leapin.. yes as stated in this post, it goes away for some. I wouldnt call it damage.. yet
My ENT did a sort of tilt table test. He uses a special chair that can pretty much flip you right over. It is more to measure the severity of vertigo. I almost hurled all over his nice white coat.
After all my tests, my Lyme MD concluded that Babs was at the core, as we suspected. My BP has improved some while on Mepron. I'm still running in second gear though.
Good luck with your tests.
Bc