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New Doctor - New Ideas - Could This Be The Answer, Or At Least A Part Of Our Puzzle?


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#121 issie

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Posted 22 January 2013 - 03:43 PM

Someone informed me that one of my post above sounded like my diet may be not helping as much as I had hoped.  WRONG ----it is helping tremendously.  I can start making list of how much this is helping me.  I just am not noticing that my POTS is COMPLETELY improved yet.  I want instant fix and want a few months to undo what has been a lifetime.  The doctor yesterday informed me that it will take time.  POTS is a hard one to correct and the improvements may be very subtle.  But, there are improvements.  I mean my kidney function has improved greatly and I'm losing weight, my finger nail ridges are going away and I have moons in my nails now, very little issues with nausea - bloating - or potty issues.  The whites of my eyes are not all bloodshot and the blue is clearer.  My skin is looking better and my keratosis is leaving.  I'm having less edema and can tell my circulation is better in my peripheral limbs - varicose veins are improving. My blood sugar has gone from slightly high to normal too.   I can keep going - if people want more of a run down.  But, in this short time there have been MANY improvements.  I went shopping to 2 stores yesterday, walked around and stood for quite awhile and did okay.  I still got the bit of tachy from standing in line too long at the last place.  But, I did it and spent over an hour in the stores.  That in itself is AMAZING.  The tachy and higher bp with standing is still there and there are still those awful adrenal HyperPOTS surges.  But, things are improving.  Just in my labs alone ---the improvements are noticeable.  I think my friends and my husband notice the changes more then I do ----I have so many people making comments about how much better I look and how much improvement they are seeing.

 

Hoping that time will continue to improve things for me.  With the things I've seen in 2 months ----I'm confident that they will.

 

Issie



#122 issie

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Posted 26 January 2013 - 04:59 PM

I was just looking over another forum and noticed that Dr. Driscol has pulled most all her videos and statements about CCVSI.  Her comments were that she and her kids are NOT taking Diamox daily now - except with flares of colds/flu etc.  She is crediting most of her POTS improvements to treatment for mast cell issues.  (I know for me the Diamox helped with my head pressure - but, long term it was awful for me.  I do however have issues with sulfa drugs.  But, the acidity that the Diamox caused was terrible and trying to balance that was worse then the treatment.)  She is telling people to treat mast cell issues.  She recommends the H1 and H2's and also GastroCrom or Ketotifin.  I myself have found that this treatment and using GastroCrom has been of GREAT benefit to me too.  The other thing she is saying is to thin the blood.  Interestingly, I'm on an enzyme that does just that.  Not only will it help to break down bio-films - but, has some blood thinning properties.  I also use turmeric ---which I have been using for quite awhile.  (Some have found that turmeric helps with their POTS symptoms.)  I'm adding one thing at a time.  Right now, the new enzyme has thrown me into another herx.  But, that was to be expected.  When the bio-films break down then the immune system can recognize the protozoa and co-infections and start to eliminate them.

 

Issie



#123 boymommy3

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Posted 26 January 2013 - 05:11 PM

Hi Issie!

 

Could you explain your head pressure to me and is a POTS symptom or something to with mast cell?



#124 issie

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Posted 26 January 2013 - 06:22 PM

For me, I have occasional migraines.  I also have pressure behind my eyes and in my head.  It feels like I need a pressure relief valve to open and it would help.  My eyes hurt sometimes really bad - like they are "bugging" out - with pressure.  I'm not sure what causes this.  I've had eye appts. (even with a Mayo eye doc).  My glaucoma pressure is okay.  There is some theory behind possible issues with hydrocephalus - not enough fluid drainage with spinal flow in and around the sinus and brain cavities and with spinal fluid flow.  There are also ideas out there that there is venous flow issues from the brain caused by faulty veins in the neck (CCVSI) and also possibly high deposits of iron.  All of these things are theory at this point. (This is also a theory with Multiple Sclerosis.)   I'm not sure that any of it has been proven as issues with POTS.  But, there is a lot of speculation on these two things as causing issues.  They know that there are blood flow issues above heart level in POTS.  What are causing these issues and what will correct these issues ---is something many are trying to figure out.  My doc. thinks that there are CCVSI issues and is thinking that when my veins are more clear of these organisms - my POTS should get better.  I'm hoping he's right.  So far, everything he has given me has been of benefit.  So, I'm very hopeful that things will continue to improve.

 

Issie



#125 Angela

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Posted 30 January 2013 - 05:55 PM

Hi, just wanted to jump in on this subject, I got my tests results back yesterday and I am positive for protomyxzoa rheumatica as well.  It appears, from the picture my white blood cells are trying to attack the protozoa so that's good. Doctor Fry has prescribed me minocycline, which is a very gentle antibiotic, used to treat many for acne but he has had success treating the protozoa with this along with the very low fat vegan diet.  His first indication to test me for protomyxzoa rheumatica  was due to Sonora Q lab autoimmune testing showed inflamation.  He believes that most autoimmune and chronic illnesses are caused because of this type of bug.  Ann F. Corson is another doctor who treats the protomyxzoa rheumatica.  Below is a link and it actually shows pictures of what the protozoa/biofilm can look like.

 

http://protomyxzoa.o..._rheumatica.pdf



#126 issie

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Posted 30 January 2013 - 06:27 PM

Anglea,  We thought you would be positive.  Hope that the treatment helps you - I'm having improvements!

 

Appreciate the link and the fact that another doctor is treating for this and what her protocol is.  It is very similar to what I'm doing.  I noticed that she does lymphatic drainage things.  That's one thing I think I need.  As I have issues with that and a lot of headaches - I think this may be related to clearing of the veins and from what I'm reading on other sites - the blood can get a little thicker when you start having die off.  Your body has to process the die off and it has to be eliminated.  I think the enzymes that I'm recently put on will thin my blood some and also help to eliminate things better.  Going through a herx at the moment because the enzymes also break down the bio-film so that the protozoa can be easier detected by the immune system.

 

It's a good sign that your immune system seems to be up and going and there are signs that it is eliminating things.  Since I have a faulty immune system to boot - I think it will take me a little longer to get the desired results.  I haven't started treating the co-infection yet either.  One thing at a time. . . . .

 

Issie



#127 Angela

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Posted 30 January 2013 - 08:57 PM

yep, he hypthosizes that the protozoa causes issues with blood flow to the brain and then back down to the heart, which causes many of our issues with heart rate, blood pressure and dizziness, air hunger etc. he also definitely thinks a major part is the ccsvi...the vein issues of the kneck out of wack so then i felt comfortable enough mentioning the dva in my left temporal lobe...same area where my eeg noted brain slowing first dx'd as siezure activity, and I noticed, although he didn't comment this way or that, he wrote that down as if he was pondering something instead of disregarding like other docs I have seen in the past.

 

hopefully this didn't post 2x, when I tried to first post it said "saving post"



#128 Altruism

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Posted 31 January 2013 - 02:48 AM

I'm so happy for both of you!!!!

A dumb question - what specifically should I get tested to rule out protozoa as a cause for my POTS? What type of blood work? Thanks!

#129 issie

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Posted 31 January 2013 - 07:55 PM

You have to find a doctor that deals with Lyme disease and their co-infections and get that checked first.  It can be done through Quest Labs.  This particular protozoa is tested by Dr. Fry and doctors can send in the blood to his lab for checking that.

 

Anglea, I liked the link you put up.  Anyone else see the close similarities to us with our POTS??????  When I started figuring out some of the close tie-ins ---I had to pursue it as a possibility.

 

Issie



#130 doozlygirl

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Posted 01 February 2013 - 10:58 PM

Hi everybody,
Haven't been on the site much lately, as I am entrenched in learning about my 23andMe SNPs by relearning biochemistry to better understand how diminished enzymatic pathways/methylation are contributing to my ongoing issues. Over the past 6 months, I have become even more convinced that underlying infections are why I am not able to heal, no matter what I have tried to get better.

I have significant mast cell activation (immune mast cell disorder), which hijacks my autonomic nervous system during anaphylaxis and less severe during mast cell degranulation. Typical mast cell meds have limited my reactions, but not stopped them completely. My 23andMe data shows significant blockages/diminished capacity of several essential specific enzymatic pathways, and correlated to many of my specific triggers, such as sulfa/sulfites/sulfur based foods, products and meds. Zantac contains sulfur, so I was adding to my issues with that one.

My latest "finds" have me looking at heavy metal toxicity. As a former healthcare worker, sick child and even sicker adult, I have been exposed to over 60 innoculations in my lifetime, have a mouthful of amalgams, and have a history of a mystery infection in my childhood, which is long suspected to be CMV/EBV, as I was bedridden for over a month in 2nd grade. I also have ongoing candida yeast issues after minimally successful multiple approaches to treatment, issues point to underlying co-infections and heavy metals, as metals often harbor these bugs, then sets off the immune system into high gear. Methylation issues are often linked to co-infections and heavy metal toxicity as the body can't rid of these things on their own.

I read this long informational post the other night, then today got this link through a FB Lyme site. I nearly fell off my chair, as I saw Dr Fry's name and the name of the presenter that Angela posted two days ago. Here is an extened version of the talk Angela posted, presented on January 26, 2013.

http://www.betterhea...ans-round-table

Check out slide 23 - about the complexities of chronic ill patients. Notice how it states to support methylation.

Slide 36 mentions POTS. It also talks about elevated sulfate/ammonia. These are methylation issues tied most often to CBS and SUOX SNPs.

Slide 57 gives a pretty thorough approach to dealing with a chronically ill patient, which is similar to what I am reading in the methylation world.

This topic is facinating and I appreciate the conversation.

Issie, great to hear this is helping you so much.

Lyn

#131 issie

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Posted 02 February 2013 - 01:10 AM

Yes, it is so surprising to me how my diet and what I'm doing for these infections correlate with what I'm learning that I need to do with my Methylation mutations.  I have a CBS issue - and others.  So, staying away from anything with a high sulfur content and eliminating that - using Yucca and molybdenum - to further address these issues.  And staying away from wheat and gluten because of the high arginine content ---seems to be making a difference.  It just seems that my puzzle pieces are falling into place.  I hope that I'll continue to improve. 

 

When you are in a herx - you have this awful feeling - that it will last.  I've gone through one and the new supplement has thrown me into another one.  So, I know it will get better.  I try to not come on when I'm in a down/herx because you don't feel so good when it's happening and you might seem more negative then you should.  But, I look at it as a good thing and a sign that things will get better past this detox phase. 

 

I had another person write me today about finding out that they have Lyme's and a co-infection.  They were having an awful HyperPOTS time and now after 4 months of treatment are feeling better.  I hope she will post about her experience.  It is amazing to me that there are so many similarities and issues that can be affecting our POTS with this as a possible connection.  It might not be the "whole" answer - but, it's got to make some sort of a difference.  Already, my labs are looking better.  So, it's all up from here!

 

Issie



#132 Angela

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Posted 09 February 2013 - 03:20 PM

here u go rama, and to all who might connect something via this info, also note on dinet a cause of pots is the protazoa chagas, which is published I believe, so yeah, obviously parasites and protozoa/biofilm are proven autoimmune and can cause pots,

 

LYME DISEASE SYMPTOM CHECKLIST

James Schaller, M.D., M.A.R.

The following checklist is not meant to be complete or authoritative. Information about Lyme disease is constantly emerging and changing. Therefore any checklist is intended for use as a starting point. In traditional medicine, a physician performs a complete history and physical. Labs and studies assist in clarifying the differential diagnosis. In Lyme disease, much debate exists about laboratory kits, the alteration of kits to have fewer possible bands, and which labs are optimally sensitive and specific. This checklist is not intended to address that issue or treatment.

Over 200 vectors carry the Ixodes tick, which is the most commonly known insect spreading Lyme disease. With so many vectors, the underlying assumption behind this checklist is that Lyme is not rare in North America, Europe, South America, Russia, Africa or Asia.

We know Lyme disease is highly under-reported.

Immediately upon the onset of a tick bite, it transmits a pain killer, anti-histamine and an anti-coagulant. Based on animal studies, it is also possible the bulls-eye rash is less common then assumed, in part because injections of spirochete related material in laboratory animals only show a rash with the second injection.

This checklist is offered with the sincere wish that others will improve on it

Some of the checklist materials might be new to you, which underscores the need for another scale to add to the ones currently in existence. This list is based on a massive review of thousands of papers over a decade of full-time reading, 2012 science revelations, and/or massive chart reviews. Since modern Lyme disease seems to focus on tick borne disease and other laboratory testing, I will start with lab testing considerations. If a lab test has a value or a percentage, the numbers I am picking are meant to avoid missing positive patients. I am concerned about physicians and other healthcare workers not treating an infected patient, who over time can experience disability or death at a frequency that is impossible to determine.

LABORATORY TESTING—INDIRECT AND DIRECT

1. Vitamin D level is in the lowest 20%. If you supplement, it should be in top 50%.
2. CD57 or CD58 is in the lowest 20th percentile
3. Free testosterone is in 10th percentile or below
4. In 5% of patients the testosterone or free testosterone is over the normal range.
5. DHEA is in lower 20%. Or rarely is it fully over the top level.
6. Free dihydrotestosterone is in the lowest 20th percentile or well over the normal range.
7. Epstein Barr Virus is abnormal in any measure. [This virus is believed to be positive over normal positive levels in the presence of infections or high inflammation.]
8. On the Western Blot, IgG or IgM any species specific band at any blood level, e.g., 18, 21, 23, 30, 31, 34, 37, 39, 83, 93.
9. A free T3 level under 2.8 [the normal bottom range in 1990 was 2.6; the influx of large numbers of elderly patients reset the healthy “normal” range].
10. Positive for viruses such as CMV, HHP-6, Coxsackie B Types 1, 2, 3, 4, 5, 6, Parvo B-19 or Powassan virus
11. Positive for Mycoplasma, e.g. mycoplasma pneumoniae.
12. The patient is positive for infections other than routine Lyme, [that is Borrelia burgdorferi sensu stricto, Borrelia afzelii and Borrelia garinii]. Some of the other infections also carried by infectious ticks, fleas or other vectors include Babesia (duncani, microti or other), Anaplasma (HGA), Ehrlichia (various species/strains), Rocky Mountain or other Spotted Fevers, Brucellosis, Leptospirosis, Q-fever, STARI (Master’s Disease), Malaria, and Bartonella [e.g., B. henselae, B. quintana, B. elizabethae and B. melophagi]. Once tests are commercially available for testing all forms of protozoa affecting humans, including FL1953, all Bartonella species, and Borrelia miyamotoi and other Lyme species, reporting should increase.
13. IL-B is in lowest 10th percentile
14. IL-6 is in lowest 10th percentile
15. TNF-alpha is under 2, or in lowest 20th percentile
16. A WBC count was, or is, under 4.5
17. Eosinophil level in the CBC manual exam is either at 0-1 or 6-7
18. Total manual Eosinophil level is 140 or less
19. XRAY or other study shows cartilage defects in excess of injury or age median
20. If a full auto-immunity panel is run with at least eight different tests, two are positive; for example, you have a positive anti-gliadin and a positive thyroid peroxidase.
21. Positive or near positive (borderline) ELISA, PCR, or a positive tissue biopsy; or a tick from your body is positive for Lyme or other tick infection
22. Lab tests show high inflammation, e.g., a high C4a, elevated cholesterol and C-peptide. These are never specific just for Lyme
23. Lab tests show a MSH level under 30 [the reference range of 0-40 is due to the increase of very sick patients tested, and 40-85 is a better reference range which was used before the flood of the sick reset the range of normal]. MSH is an anti-inflammatory hormone.
24. VIP is under 20. This is an anti-inflammation chemical.

BODY EXAMINATION RESULTS

25. Weight loss or gain in excess of 20 pounds in 12 weeks
26. A round or oval rash with a dark center was or is present in a loose “bulls-eye pattern.” Other size and shape rashes that have no other cause after exposure to ticks and vectors.
27. Healing is slow after scratches or surgery. For example, after a cat scratch, flea bite or tick bite the mark is still visible later.
28. Skin on arms, hands or feet has a texture like rice paper.
29. Clear reaction and effect seen with antibiotic treatment. Specifically, a marked improvement or worsening of a serious medical problem or function is observed with a spirochete killing treatment, e.g., doxycycline, tetracycline, minocycline, any penicillin such as amoxicillin, azithromycin, clarithromycin or cefuroxime.
30. Presence of skin tags, red papules of any size, excess blood vessels compared to peers, and stretch marks with color or in significant excess of peers.
31. Moles and raised or hard plaques in excess of the few on normal skin.
32. Areas of skin with ulcerations such as those seen in syphilis, but at any location on the body.
33. Areas of clear hypo-pigmentation and hyper-pigmentation
34. Positive ACA (Acrodermatitis chronica atrophicans) which is a sign of long term untreated Lyme disease. Some report ACA begins as a reddish-blue patch of discolored skin, often of the hands or feet. It may include the back in some patients. The lesion slowly atrophies over months to years, with many developing skin that is thin, dry, hairless, wrinkled and abnormally colored. The color of the extremities such as hands and feet can be red, dark red, brown, dark blue or purple.
SAMPLE NEUROLOGY EXAM
35. Patient’s short-term memory is poor. For example, if asked to recall these numbers—23, 5, 76, 43 and 68—the patient cannot recall them.
36. Patient cannot reverse four numbers, so if given—18, 96, 23 and 79—the patient cannot do it.
37. If asked to subtract 17 from 120, (college graduate), it cannot be done in a timely manner. If a high school graduate, subtract 7 from 100 and continue to subtract by 7 four times in 20 seconds.
38. Light headedness upon standing quickly in excess of peers, and with no clear cause
39. Dizziness unrelated to position
40. Dizziness made worse by Lyme killing antibiotics
41. Trouble doing a nine step heel to toe straight line walk test with fingers slightly in pockets [The patient should not sway or need their hands pulled out to prevent a fall]. In patients with past experience in skating, skiing, dance or ballet this should be very easy and is rarely a challenge to such people. If it is not easy, it is suspicious medically, but not only for Lyme disease.
42. Trouble performing a one leg lift, in which one leg is lifted 12-18 inches off the ground in front of you, as you count, e.g., “one Mississippi, two Mississippi, etc.”
43. Positive nystagmus [your eye jerks when you look right or left]

PATIENT’S REPORTED PHYSICAL HISTORY

44. Illnesses that come and go and decrease functioning with no certain cause
45. Serious illnesses that undermine function with no clear cause, and which affect more than one body organ
46. An abnormal lab result, physical exam finding or illness that is given many diagnoses or has no clear cause.
47. Mild to severe neurological disorders or psychiatric disorders
48. A very profound neurological disease which does not clearly fit the labs, studies and course of the illness
49. A moderate or severe medical, psychiatric or neurological illness. [Many severe disorders can be associated with spirochetes such as those causing syphilis, and some propose that Lyme is also related to a well-known serious brain disease].
50. Severe medical, psychiatric or neurology illness with uncommon features, such as Parkinson’s disease, appearing at a young age
51. Facial paralysis (Bell’s palsy)
52. Personality has changed negatively and significantly for no clear reason.
53. Psychosis at any age, but especially after 40 years of age when usually it would have already manifested itself
54. Severe anxiety
55. Mania or profound rage
56. Depression
57. Depression or anxiety that did not exist when you were less than 25 years of age
58. Irritability
59. Any one of the following: paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa or obsessive-compulsive disorder.
60. Adult onset ADHD/ADD [Primary psychiatric biological ADD or ADHD is present at 7 years of age. Adult onset is a sign of a medical condition.]
61. Increased verbal or physical fighting with others
62. Functioning at work or in parenting is at least 20% reduced
63. Patience and relational skills are decreased by 20% or more
64. A mild to profound decrease of insight, i.e., an infected patient does not see their decreased function, failed treatment or personality change
65. A new eccentric rigidity to hearing new medical or other important information
66. Difficulty thinking or concentrating
67. Poor memory and reduced ability to concentrate
68. Increasingly difficult to recall names of people or things
69. Difficulty speaking or reading
70. Difficulty finding the words to express what you want to say
71. Inability to learn new information as well as in the past [receptive learning]
72. Repeating stories or forgetting information told to close relations, such as a spouse, roommate, sibling, best friend or parent
73. Confusion without a clear reason
74. An addiction that results in relapse in spite of sincere, reasonable and serious efforts to stop
75. Fatigue in excess of normal, or fatigue that is getting worse
76. Trouble sleeping including mild to severe insomnia and disrupted sleep
77. Sleep in excess of 9 hours a day or night, or sleeping in excess of 9 hours every day if allowed
78. Trouble falling asleep
79. Trouble staying asleep [Taking a 5 minute bathroom break does not count]
80. Gastritis or stomach sensitivity not caused by H. Pylori
81. Intestinal troubles that are unable to be fully managed and/or which have no clear diagnosis
82. Nausea without a clear reason
83. Sensitivity to lights, sounds, touch, smell or unusual tastes
84. Sensitivity to cleaning chemicals, fragrances and perfumes
85. Ear problems such as pain or increased ear “pressure.”
86. Any trouble with the senses (vision, sound, touch, taste or smell). The use of corrective lenses or contacts does not count, unless the prescription is changed more than expected.
87. Buzzing or ringing in ears
88. Double vision, floaters, dry eyes, or other vision trouble
89. Conjunctivitis (pinkeye) or occasional damage to deep tissue in the eyes
90. Blood clots fast when you get a cut, or you have a diagnosed problem with clotting. This may also be seen in blood draws where blood draw needle clots when blood is being removed. If on a blood thinner, blood thinness level goes up and down too much.
91. Cardiac impairment
92. Chest pain with all labs and studies in normal range
93. Occasional rapid heartbeats (palpitations)
94. Heart block/heart murmur
95. Heart valve prolapse
96. Shortness of breath with no clear cause on pulmonary function tests, examination, lab testing, X-rays, MRI’s, etc.
97. Air hunger or feelings of shortness of breath
98. Someone in your neighborhood within 400 yards in any direction of your dwelling has been diagnosed with a tick borne infection. [This includes vacation locations].
99. You have someone living with you with any type of tick-borne infection—this assumes they were not merely tested for one infection. [It is not proven that the small Lyme-carrying ticks only carry Lyme, and it is possible some carry other infections without carrying Lyme at all].
100. You have removed any ticks from your body in your lifetime.
101. You have removed ticks from your clothing in your lifetime.
102. After a tick or bug bite, you had a fever for at least 48 hours.
103. After a tick or bug bite, you were ill.
104. Grew up or played in areas with many small wild mammals.
105. When you are in a room that has visible mold or smells like mold and you start to feel ill, you do not return to your baseline health in 24 hours.
106. Any discomfort within two minutes of being in a musty or moldy location
107. Gaining or losing weight in a manner clearly inconsistent with diet and exercise
108. New or more food allergies than ten years ago
109. Feel worse after eating breads, pasta or sweets
110. No longer tolerate or enjoy alcohol
111. Anti-histamines are bothersome, more so than in the past.
112. Reaction to medications is excessive (you are very “sensitive” to medications)
113. Your response to antibiotics is significantly positive and you feel more functional, or you have the opposite reaction and feel worse, feeling ill, fatigued or agitated.
114. Numbness, tingling, burning, or shock sensations in an area of skin
115. One or more troublesome skin sensations that move over months or years and do not always stay in one location
116. Rash or rashes without a simple and obvious cause
117. Rashes that persist despite treatment
118. Eccentric itching with no clear cause
119. Hair loss with no clear cause
120. Muscle pain or cramps
121. Muscle spasms
122. Muscle wasting without a clear cause
123. Trouble with your jaw muscle(s) or joint insomnia (TMJ)
124. Joint defects in one joint with no clear cause if 20 or younger
Joint defects in two joints or more if 35 or younger
Joint defects in three or more locations if younger than 55 with no clear trauma
125. Swelling or pain (inflammation) in the joints. [Most patients never have joint disease].
126. Joint pain that shifts location
127. Neck stiffness
128. Chronic arthritis with or without episodes of swelling, redness, and fluid buildup
129. Chronic pain in excess of what seems reasonable
130. Nerve pain without a clear cause
131. Headaches that do not respond fully to treatment, or which are getting worse
132. New allergies or increased allergies over those of your peers
133. Any autoimmunity–Lyme and other tick infections, over many years, increase inflammation and decrease anti-inflammation chemicals. We believe this leads to increased food sensitivities, increased autoimmunity and a heightened sensitivity to various chemicals and medications.
134. Day time sweats
135. Night time sweats
136. Chills
137. Flu-like symptoms
138. Bladder dysfunction of any kind
139. Treatment resistant interstitial cystitis
140. Abnormal menstrual cycle
141. Decreased or increased libido
142. Increased motion sickness
143. Fainting
144. A spinning sensation or vertigo



#133 ramakentesh

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Posted 09 February 2013 - 08:27 PM

Oh right - this is what you were talking about.

 

Do you guys really want me to respond to that? I understand some people are drawn to more 'speculative' stuff. You know Im highly sceptical of it all and I get the feeling people tend to get emotionally invested in this debate and Id rather not get people angry.

 

Do you read that stuff there about Lyme and not wonder? Do you think a medical researcher would use terms like 'anti-inflammatory chemicals'? What does that actually mean? How can you say that various cytokines are 'in the 20th percentile'? Cytokines by their very nature fluctuate and are never fixed. How can cytokines be low yet signs of 'inflammation' are apparent? Its very easily to attribute any subjective symptom to that description.

 

My general feeling is if we assume there are about 24 research based potential etiologies of POTS and maybe another 50 speculative ones made up by GPs or patients the best way to measure their validity is to just look at the basics. Does what im reading stand up to basic understandings of physiology?



#134 ramakentesh

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Posted 09 February 2013 - 08:34 PM

But please -im not trying to annoy you and I will stop responding if you do.



#135 Angela

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Posted 09 February 2013 - 08:37 PM

the dr. who figured out the serious ulcers are most often caused by e poli and treated his patients with antibiotics for the parasite had to swallow the bugs himself to prove his theory took him over 15 years of critizism of his "speculations" and now that is common knowledge and how those ulcers are treated.  not mad at ya, just saying.