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Pots Or Lyme?

Guest malosp

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Guest malosp

I am here because I came to this board, I think back in April, looking for help for a diagnosis.

I have since posted that I found out I have lyme. I want to say sorry to anyone that I may have offended. I know that not all POTS is caused by lyme. And each person must make up their own mind if they have lyme or even want to be treated for it.

I guess just like former smokers become the biggest reformers, I am angry that I went undiagnosed, and I want other people to know about it. So please forgive me with my zeal right now. Just realize it is out of caring for other people, that they will not have to go through what I went through.

I just know that I just saw another post that sounded just like me when I came here. I couldn't help but at least post to her that it could be lyme. I mean aren't we all responsible to help those that fellow us. I was so scared when I came here before and I know I was asking for help. That word "help" touches my heart because I know they are scared like I was.

I would feel terrible if I did not at least post to her to let her make up her mind.

I don't know if all my POTS symptoms will go away now that I am being treated for lyme. I thought I had a lot of stuff including B12 deficiency. When you have to attempt to find your own illness you run into lots of wrong turns. But now that I have a positive Western Blot and I am responding to the antibiotics I know I have lyme. I also have a doctors clinical diagnosis and it is not just my diagnosis. And it is a regular doctor not a lyme doctor. Lyme is so controversial and I want everyone to know I was as skeptical as most in the beginning. When a doctor first suggested lyme to me I said no way.

It may be that Lyme is yet another disease that causes the POTS syndrome. So again I don't know how often I will visit. But if I see someone who presents like I did I suppose I will post. Some people obviously have other causes of POTS. But again I would be suspcious of any supposed "viral" with symptoms that came after it and have not gone away - it may be lyme. Most people don't even see the tick and more than half do not get the typical bulls eye rash.

Again, it is fascinating that the symptoms of POTS and LYME are exactly a like. See the below:

Pots Symptoms

* Tachycardia (Grubb, 2000)

* Lightheadedness (Grubb, 2000)

* Dizziness (Grubb, 2000)

* Palpitations (Grubb, 2000)

* Exercise intolerance (Grubb, 2000)

* Blurred Vision (Grubb, 2000)

* Chest discomfort and/or pain (Grubb, 2000)

* Clamminess (Grubb, 2000)

* Fainting or near fainting (Grubb, 2000)

* Anxiety (Grubb, 2000)

* Flushing (Grubb, 2000)

* Fatigue (Grubb, 2000) (which can be disabling)

* Headache/migraine (Grubb, 2000)

* Shortness of breath (Grubb, 2000)

* Postprandial hypotension (Grubb, 2000) (low blood pressure after meals)

* Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color)

* Intolerance to heat (Grubb & Karas, 1999)

* Feeling cold all over (Grubb & Karas, 1999)

* Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)

* Bloating after meals (Grubb et al., 1997)

* Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)

* Delayed gastric emptying (Grubb et al., 1997)

* Polyuria (Jacob & Biaggioni, 1999) (excessive urination)

* Diarrhea (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)

* Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)

* Tremulousness (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)

* Tunnel vision (Low et al.)

* Sleep disorders (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)

* Cold hands (Low et al.) (and often feet & nose)

* Loss of sweating (Low et al.)

* Hypovolemia (Low et al.) (low blood volume)

* Chills (Low et al.)

* High blood pressure (Low et al.)

* Hyperventilation (Low et al.)

* Numbness or tingling sensations (Low et al.)

* Generalized weakness (Low et al.)

* Reduced pulse pressure upon standing (Low et al.)

* Low back pain (Mathias, 2000)

* Aching neck and shoulders (Mathias, 2000)

* Excessive sweating (Robertson, 2000)

* Nausea (Robertson, 2000)

* Noise sensitivity (Stewart, 2001)

* Light Sensitivity (Stewart, 2001)

* Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)

* Arrhythmias (irregular heart beats)

* Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)

* Easily over-stimulated

* Feeling full quickly

* Feeling "wired"

* Food allergies/sensitivities (some foods seem to make symptoms worse)

* Hyperreflexia

* Irregular menstrual cycles

* Loss of appetite

* Loss of sex drive

* Muscle aches and/or joint pains

* Swollen nodules/lymph nodes

* Polydipsia (excessive thirst)

* Pupil abnormalities

* Weight loss or gain

* Feeling detached from surroundings

* Restless leg syndrome

Lyme symptoms:\

*Fever, chills, sweats

*Weight change (loss or gain)

*Fatigue, tiredness

*Unexplained hair loss

*Swollen Glands

*Sore Throat

*Testicular pain or Pelvic pain

*Unexplained menstrual irregularity

*Irritable bladder or bladder dysfunction

*Sexual dysfunction or loss of libido

*Upset stomach

*Change in bowel function, constipation

*Chest pain or rib soreness

*Shortness of breath, cough

*Heart palpitations, pulse skips, heart block

*Joint pain or swelling

*Muscle pain or cramps

Twitching of the face or other muscles


*Neck creaks and cracks, neck stiffness

*Stiffness of the joints or back

*Tingling, numbness, burning or a stabbing

*Facial paralysis (mouth is crooked on one side when you talk in front of a mirror-Bell's Palsy)

*Eyes/vision: double, blurry, pain, increased floaters (specks in front of vision)

*Ears/hearing: ringing, buzzing, ear pain

*Dizziness, poor balance, increased motion sickness

*Light-headedness, wooziness, difficulty walking, clumsy bumping into objects


Confusion, difficulty in thinking, difficulty in concentrating, difficulty with sticking with task

Difficulty with concentration or reading

Decreased short term memory

Disorientation: driving past your turn, getting lost, going to wrong place

Difficulty with speech

Mood swings, irritability, depression

Disturbed sleep: too much, too little, early awakening- goes through cycles sometimes too much

Exaggerated symptoms or worse hangover from alcohol

Slowed pulse

Testicular enlargement

*Nodules on earlobes

*Stomach distension

*Breathing with mouth open

*Eye lesions

*Nasal stuffiness /restriction

*Shortness of breath

*Hypersensitive olfactory organ (sensitive to the slightest odours / smells)

*Feeling drunk without drinking

*No desire to do anything- including favorite hobbies

*Too slow a pulse when resting

*Rapid pulse with slightest exertion

*Perfuse sweating- soaking wet if you go snow skiing

*Muscle pains, cramps or charley horse

*Pains switching from one side of the body to the other

*Enlarged lymph glands

*Stiff aching neck

*Changes in vision

*Generalized acheyness

*Limbs- especially arms feel heavier than normal.

*Diminished or absent reflexes

*Brain fog

*Poor coordination/ataxia

*Continual infections

*Poor concentration

*Decreased ability to spell correctly

*GI distress/abdominal pain

*Poor word retrieval/Aphasia


*Difficulty swallowing




*Loss of muscle tone

*Changes in taste or smell

*Obsessive-Compulsive symptoms

*Panic attacks

*Changes in cerebral blood flow/brain waves

*Number reversal

Light Sensitivity

*Trigeminal neuralgia (TMJ)

*Dilated cardiomyopathy

*Loss of temperature control

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If you do have Lyme would you fail a TTT?? Most likely yes, right?!

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Guest malosp
If you do have Lyme would you fail a TTT?? Most likely yes, right?!

Hi there,

I never took a TTT. This pots forum was visited because I keyed in my symptoms into google and this site came up.

Visiting this site was the start of my final journey to lyme.

If you had a virus it could have been a bacteria instead....I was told I had mono.....my EBV and CMV were elevated. The doctors just said it would take time and I would get better.

Now I know that lyme suppresses the immune system and it is not uncommon to be sick often and also have your viruses that used to be kept in check by your immune system come back out.

I really think you could fail the TTT if you have lyme because lyme obviously affects the nervous system and your nervous system controls your blood pressure and your heart rate.

So I hope you find your answer. I do. I am on the web a lot right now because I am in the beginning stage of my antibiotics and I am not feeling great. But I must say it feels good at least to know the CAUSE of why I was so ill. And as I am sitting here it feels so good to test my pulse and find a 78 or a 79 instead of the 120 I used to get just sitting sometimes. AGain, truly a lot of my POTS symptoms are gone. I have a long road ahead. And I do not know if you can be cured. I think many many people do get better. If they didn't there would be a national crisis. Yes, there are people that stay sick but there are also people that stay sick with mono and every other disease state. But you have a chance.

Just remember you can have a negative lyme test and still have lyme. It is a clinical diagnosis as per the CDC.

You may have tried drugs already (I didn't read your ID line) so why wouldn't you be willing UNDER doctor supervision to try a trial of antibiotics if you think you fit the criteria. Again,it may not be lyme. I am not a doctor. Just someone who cares for their fellow human beings and am amazed at the amount of undiagnosed lyme patients out there.

But if you present with the symptoms on my post for lyme, you feel you may have been somewhere where you could have got bitten by a tick...for instance, laying on the ground, hiking, walking in the woods. Sitting on the lawn........and a good reputable doctor says you have lyme...then I would try antibiotics. In addition, they truly don't know what else can give lyme.

Take care

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