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Avatar universal

Many Symptoms-could be unrelated.

Here's a lengthy story but I hope someone can lead me in the right direction. Three years ago I was remodeling a house(tearing down walls, mouse droppings, mold, etc) and got an infection that didn't go away. The first symptoms were general flu like with an erratic pulse that would wake me at night and continued throughout the day. Since then I've not been able to breathe the same but recently it's become much worse.  Extreme fatigue, shortness of breath -worse on minimal exertion, three weeks ago started having a pain in my left shoulder blade with arm and hand tingling, for awhile have had occasional lip tingling, fluid in ears since this began, hard lumps behind ears for longer, gastric problems beginning before, heart irregularities starting then as well as recurrent low grade fevers, lethargy, loss of muscle tone preceded by weakness, nonproductive cough that began before recently starting occasionally smoking, very cold hands and feet, clammy skin when intolerant to heat including sweating when I previously wouldn't break a sweat in 90 degree temps, bruising easily, memory problems and at times just not feeling very smart, spending multiple days in bed monthly- sleeping almost straight through,  Then herniating discs months after which led to prescription for pain pills which never adequately eased enough of the pain. I was afraid to be labeled a drug seeker so I didn't push the issue, nor my other worst problem of fatigue. I also didn't mention all of the above symptoms thinking they were unrelated due to fear I wouldn't be taken seriously and considered a hypochondriac. This led me (much later)to find solutions on my own to try to ease the constant pain that wasn't managed by what was prescribed and give me energy I lacked and mentioned during dr visits but didn't explain how greatly if affected my life and those around me.
This month marks three years since my near perfect life started falling apart.  At first I put great effort and energy I lacked into finding out what was going on. I had pulmonary tests confirming diminished lung capacity suggesting asthma, MRI pointing to 3 herniated discs with another bulging with degenerative disease(which probably most people have), EKG's and ultrasounds showing arrhythmia and pvc's and tachycardia, various holter monitors(one for a month) confirming large jumps in rate upon minimal exertion, murmur discovered by stethoscope, visit to two cardiologists then another at University of Michigan prescribing heart ablation (which I cancelled because I thought it would just be fixing a symptom instead if the problem), traveling to Florida Mayo confirming need for ablation(after swallowing a camera tube to look at my heart), referral to gallbladder surgeon for removal(at 5 minute consultation he said there wasn't a problem and sent me away), a rheumatologist said since ANA test was negative it didn't indicate Lupus(2 aunts of mine have it).  For my back i tried physical therapy, chiropractics, tens unit with no relief then a spine doctor said one of the discs wouldn't go away without surgery which I didn't want to get. I've had blood work done and my cholesterol is great, two thyroid tests showed opposing results but not out of the range, liver enzymes elevated(but they will try to attribute that to misuse even though it was not frequent abuse of prescibed morphine and street drugs for energy and testing was done 3 months after the fact), progesterone and estrogen levels normal.
I eventually gave up, after all I was seen by the best doctors and they didn't find the cause. This required much time, effort, energy and money and I was just done. I lost faith in getting better but I still remained positive even with my life crumbling and ending up in court, jail, rehab, house arrest, loss of trust and respect from family and friends. I always tried to be positive and was told by many in jail that my attitude inspired them. I appreciate going to jail because I had alot of time to reflect but I don't appreciate  the effect on my family and my relationship with them now. But my actions caused all this, regardless of the reasoning behind my actions. I've never once tried placing blame anywhere other than myself.
During rehab I learned alot about myself and tried hard to fit into their label but so many things just didn't relate to me. Then they tried convincing me it's ok Superwoman (a term I coined while there for my former self) died. At the time I believed  it and wrote my goodbye letter to her. Then a week later I got pissed and realized it is NOT okay! Sure, she may have been a little too perfectionistic and over-achieving but she didn't have to die.
So began my renewed effort for answers. While at rehab you have an initial consult with their doctor. This ironically happens to be the doctor I had tried previously to see, after hearing he was a good diagnostician. He wasn't accepting new patients so I was unsuccessful. But during the consult he heard the short version of the circumstances leading to today and then told me to call his office and let them know he'd take me on.  
When I later visited him I was at the peak of my anger. Recent changes in my home life stemming from my poor choices added fuel to my decision to try once again to find the right answer. So that doctor listened to my story and what symptom and sequence led to what. He spent an hour listening and gave me hope again. (he also listened to my heart, found irregular, brought in an EKG confirming abnormal activity).
He prescribed norepephedrine for energy, scheduled another MRI for pain management, blood work and another Cardiologist visit followed by another visit with him to go over results. I believe seeing him while I was most angry and frustrated helped me to express how much this has affected my life. I have hope it also helped him realize that not everyone who walks through those rehab doors abused substances to get high.  Maybe- just maybe they were finding a solution when none was found for them. Albeit an illegal, destructive and immoral one.
Since that appointment I again began thoroughly researching, finding relations to autoimmune responses regarding adrenal, endocrine, metabolism. At previous visits I failed to give good familial history regarding thyroid, adrenal, endocrine, sudden unexplained adolescent death and heart problems- all in my genetic heritage. I failed to list all my symptoms, therefore hindering accurate diagnosis. I've never been one to complain about health and succeeded in avoiding doctors, and was very healthy until 3 years ago.  I realize in hindsight that I probably wasn't a very helpful patient in this process. Heck, using words like "patient" and symptoms was a struggle for me while writing this, so was getting a prescription filled.
In my research I found those diseases in my familial lineup cause deficiencies in your body and can bring about what my body is doing. An added note, they can also reduce the efficacy of certain drugs in how your body metabolizes them, rendering them useless. This is what I've been trying to convey all along. If you don't achieve the hedonic pleasure from certain drugs(and minimal pain relief) then you will have a harder time becoming addicted to that substance.
I'm not going to go into specifics regarding what I feel supports my theory such as lack of withdrawals, lack of cravings(except craving who I was before all this) lack of anhedonia, no urges, lack of genetic history substance abuse(environmental, yes), lack of "high" relative to others, lack of signs of "dope sickness", no substituting.
I'm not depressed, rather I feel I'm pretty darn well adjusted and positive in light of events. Even when giving up on doctors I still remained positive about life. I just dealt with it but tried to still be active when my body fought me. I fought back how I could. So begins my new quest for answers.  Please help me.
6 Responses
1340994 tn?1374197577
I think people could help you better if you could just separate your PERTINENT history and symptoms from all the unrelated information.  
1530171 tn?1448133193
Hey Angelina,
Welcome to the forum.
You have been through a lot..
I am amazed with your resilience and determination.
  And you sure deserve a break. Some  useful answers would help.
1) Most likely the trigger-not necessary the cause- of your issues stems from the short term exposure to:
a. mold  b. asbestos  c. mouse droppings-  any one or any combination.
Can you find out whether there was asbestos present in the walls?
It would be an important detail, as in short term exposure, a high number of of fibers inhaled could a have a significant impact on your health.

2) The original infection sets-up the terrain for a SYSTEMIC Pathogenic
Infection ( pathogens were dormant in the body up to this point). Such infections are triggered by traumas, injuries, illnesses
and other events that may weaken affected organs, systems of the body
and of course the immune system.
The onset of the symptoms are usually fast, if not sudden, following the
triggering event.

3) The Pathogenic Infection may spread to other parts and systems of the body as the immune system remains weaker.
Any genetic predisposition, will likely get expressed in this stage (3)
rendering more body processes dysfunctional.
Most medical tests come back negative or inconclusive, as these pathogens are not detectable (hiding from the immune system, disguised
using cellular membrane)

4) In this stage, Cellular Health Integrity is severely compromised within
the affected systems. The sterol hungry pathogens feed off the cells' membrane cholesterol, thus weakening the cells' structure, invading the cell, borrowing DNA and compromising the mitochondria energy production, resulting  gradually in cell death.
Medical Doctors and Specialists, with no conclusive findings and only
the presence of various symptoms, offer: a. No Diagnosis,
b. Mis-Diagnosis, c. Modern Disease Medical Label Diagnosis i.e:
Lupus, M.S., C.F.S., F.M.S etc. according to affected systems and the  symptomology. No medical cure is offered, only symptom and pain management with prescribed medication.

However, the Pathogenic Infection, had it been a detectable one, should be the Primary Diagnosis. Each sub-set of symptoms would qualify it as a different type.
The key to all this is that these Pathogenic Infections can be detected* and  treated **!
There are a number of different pathogens, the main ones being from the
Mycoplasma variety- a cross of a bactrerium, virus and parasite organism -
that do coexist as co-infections in Lyme and others. Also some mycotoxins could be involved
* Detection only from a handful of labs (igenex is one of them)while under the care of trained doctors. Dr Garth Nicolson (immed.org) is the top specialist in this field.
**Treatment is available with specific antibiotics. However, effectiveness of the treatment depends on a strong immune system, as most of these pathogens cannot be destroyed by the antibiotics. The bactreriostatic action of the treatment though, gives time to the immune system to detect and destroy the pathogens.
Please do research all this well.
Unfortunately most doctors and specialist are not familiar with all this. Some may be even uncooperative and unsupportive. Time constraints, rigid protocols, professional bias are some of the reasons.
I hope that this info will be helpful.
One thing that I did not mention is that you can do a blood volume test, as with these infections 10-35% less blood volume is typical.
This would be indicative only, but at least you will have a better idea.
The clinician would be looking at comparison with average normal
readings of 30ml/Kg (red cell mass to weight in kilograms)
Also a 24H holter ECG would be another preliminary test that could easily done. T- wave patterns would be inverted or valleys instead of peaks.
If you need more info let me know (post here or p.m me)
My advice does not constitute professional consultation.
Take care,

1756321 tn?1547098925
Causes of cold hands and feet

Peripheral neuropathy (damage to the peripheral nervous system) *
Anaemia (iron, vitamin B12, folate)
Hypothyroidism (most common cause is Hashimoto's Thyroiditis)
Raynaud's syndrome
Poor blood circulation
Low blood pressure
High blood pressure
Magnesium deficiency

* Many conditions cause peripheral neuropathy from diabetes to Lyme's Disease to vitamin B12 deficiency. Wikipedia has a more indepth list.

Large jumps in rate upon minimal exertion is a listed symptom of Inappropriate Sinus Tachycardia (IST). Two conditions that list IST are magnesium deficiency and dysautonomia (autonomic dysfunction).

These items dramatically speed up the depletion of your body's magnesium storage, and make it necessary for much more magnesium to be consumed:

Mental stress
Physical stress
High sodium diet
Cola type sodas
High perspiration
Medical drugs of all types, especially diuretics, digitalis
Chronic pain
A high carbohydrate diet
A low carbohydrate diet
A high calcium diet
A low calorie diet
Excessive calcium intake
Disease such as pancreatitis, arteriosclerosis, kidney malfunction
Malabsorption problems caused by chronic diarrhea or vomiting
High zinc levels

Causes of dysautonomias are not fully understood, but they are thought to include:

Autoimmune disorders, especially Lyme disease and Type I diabetes
Brain injury
Degenerative neurological diseases such as Parkinson's disease
Exposure to chemicals (most commonly pyridoxine)
Genetic factors
Hereditary connective tissue diseases, especially Ehlers-Danlos Syndrome
Physical trauma or injury which damages the autonomic nervous system, as with Cerebral salt-wasting syndrome
Viral illness
Mitochondrial Diseases
Avatar universal
nickodicreta has given you the best answer.  If you've gone through a lot of standard testing that has shown nothing, then the standard testing isn't looking for the right thing.  Be glad you have been spared the knife in the the case of your gallbladder and disc.  One of the saddest things I read in the Lyme, and autoimmune forums is when the physicians have removed an organ that would be essential to the patient's healing.
1530171 tn?1448133193
Hey Bob, Angelina
Excellent observation Bob!
I have a friendwho has gone through the medical circuit with absolutely
no answers. Gallbladder removal was suggested to him last year,
and he "stuck" with the conventional medical approach again, despite years of unsuccessful treatments and no diagnosis.
Not only did he not improve,his condition has deteriorated even further, with a number of extra symptoms and a lot more suffering.
I am shocked to hear surgeons say something like: "You don't need a gallbladder. You will be better off without it, as it a source of many of your problems. We do these surgeries all the time!"
Wow, do they themselves actually believe this?
  These medical protocols and approaches MUST change, as it only contributes to the dysfunctionality of the medical system.
(Just my opinion)
Meanwhile the suffering continues for most patients and normal life becomes a distant utopia.
Have a good day!
Blessings to all,

Avatar universal
Thank you so much everyone. I wanted to be thorough in my post since I failed to mention everything to the drs I'd seen. I called for the liver enzyme results and started collecting info on family genetics. Half siblings have had gallbladders and thyroids removed, one has a 5 cm adrenal tumor that has to wait until her Afib and dissection is fixed-also recently diagnosed with diabetes type2 and COPD. Previously diagnosed with depression and Fibromyalgia and Celiac Disease symptoms. Another half sister had Celiac symptoms and recently diagnosed Fibromyalgia. She also had Endometriosis. A half brother died in his sleep at age 18 unknown cause. 2 maternal aunts have Lupus and another just had surgery for Afib. Waiting on more history and not sure what's related.
I sincerely appreciate your help. I'm putting together a draft to show the doctor and maybe get me back to me.
Thank you!!!
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1756321 tn?1547098925
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