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31 year old with never - ending medical issues
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31 year old with never - ending medical issues

Hi everyone. I am looking for any info/advice/thoughts that anyone can provide. I am getting sicker by the day and have no idea what to do.

Long story short...diagnosed with Lyme Syndrome at 10, Fibromyalgia/Chronic Fatigue Syndrome/Epstein Barr at 18, Hypothroidism at 28, Chronic Lyme Disease at 30 (by a homeopathic doctor), and in between a history of GERD, hiatal hurnias, ulcers, anemia, hypoglycemia,random periods of vomiting and anxiety. Today, I found out I have quite a few food sensitivities - gluten/soy/dairy. I have already changed my diet and started a few supplements that my doctor gave me.

For a few months (with symptoms increasing rapidly over the past month and especially over the past 2 weeks), I have been experiencing dizziness, numbness in my arms/hands/legs/feet/face, headaches, and loss of balance/coordination. I also have a hard time finding certain words in conversation and a hard time spelling words that I don't normally have a problem with. I had a brain and spinal MRI done this past Friday and have an EEG and an EMG scheduled next week. I picked up my MRI report and saw "mild Chiari 1 Formation" at the top of the sheet - the only thing I understood on the report. I haven't heard from my neuro yet (I got the MRIs late Friday night so technically it's only been a day), but the office told me he would go over my MRIs after my EEG and EMG next week.

During a thyroid check up last week my TSH level came back at a 6.05 - a month and a half ago it was at 2.54.

Basically, I have been sick my whole life, but things have really gotten bad this past year. I had to stop working almost 2 weeks ago (I stand at my job) and don't feel comfortable driving. I really need to get my life back and don't know what to do next. Any thoughts would be appreciated! Do you think this is my Fibro? Lyme? Thyroid? Food sensitivities? Something else??
10 Comments Post a Comment
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Many of your symptoms are listed under Chiari One Malformation: dizziness, numbness, headaches, loss of balance/coordination, cognitive issues, vomiting, anxiety. This answer from the Chiari Malformation community is interesting if your doctor dismisses your Chiari One as a cause of your symptoms...

http://www.medhelp.org/posts/Chiari-Malformation/4-5mm-symptoms/show/1270893

Hypothyroid symptoms include allergies, anaemia, anxiety, hypoglycemia, GERD (due to parietal cells pumping out less stomach acid) to name a few.  A hiatus hernia can cause GERD as well.

From Dr. John C. Lowe's website...

"If you’re being treated for hypothyroidism with T4-replacement, ask your doctor to consider that this thyroid hormone therapy leaves almost 50% of patients suffering from chronic hypothyroid symptoms.[31] Ask your doctor to also consider that you may need to switch to a more effective therapy such as a T4/T3 combination product or T3 alone."

"31. Saravanan, P., et al.: Psychological well-being in patients on ‘adequate’ doses of L-thyroxine: results of a large, controlled community-based questionnaire study. Clin. Endocrinol. (Oxf.), 57(5):577-585, 2002."

If you are taking acid blockers for your GERD, this leads to deterioration of mental and physical health over time as you need stomach acid to absorb essential nutrients and kill off bacteria, fungi, and parasites. Acid blockers were brought onto the market for short term use only. Digestive enzyme supplements are great to help prevent reflux conditions and help with overall digestion. Betaine HCI with pepsin supplements help with insufficient stomach acid.

Most stomach ulcers are due to the H pylori bacteria and can be cured in two weeks with triple antibiotic therapy. A urea breath test is an easy test to confirm or rule out H Pylori.  Another cause of stomach ulcers is chronic use of painkillers.
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I disagree with the above posting re. acid blockers.  Acid blockers or "H2 blockers have been in use since the late 1960s. H2 blockers are well studied and are considered very safe" according to WebMd.  I have personally been taking them for 14 years with no deterioration of my mental or physical health.  Plus I am being treated by a distinguished major University in the U.S.  And if you do in fact have GERD, it damages the esophagus and not as often, but cancer is also a possibilty which means death pretty quickly.  So I would not stop taking your GERD medicine based on the above posting.

Anemia and ulcers are treatable. Hypothyroidism is very treatable and can be blood tested to see if you are taking the right dosage.  And yes, I am also taking thryoid medication.  No major problems.

Your major problems are the Lymes Disease, Fibromyalgia and possibly something else.  So it's good that you are pursuing diagnostic testing.

Sara
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Sara, it would be worthwhile digging a bit deeper than WebMd on long term side effects of H2 blockers. There's a lot of current research which reflects what he's saying about long term use. Sites like WebMD, Mayo will not quote long term research until there's a unequivocal link, but most say the long term effects require more research. Anyways, I believe to rely on H2 Blockers when a better proven alternative would be to look at one's diet to deal with excessive stomach acid. The decline in mental health happens later in life when your immune system can't fight off bacteria which triggers medical problems thus affecting brain function. Here's a good summary, good luck with your health, Laura

"A decrease in stomach acid directly impedes the body's ability to absorb calcium. According to the website, The Reflux Defense System, long-term use of acid blockers increases the risk of osteoporosis. Stomach acid destroys bacteria and fungi that enter the digestive tract. Low stomach levels weaken this defense mechanism. Long-term use of acid blockers increase the risk of developing bacterial and fungal gastric infections. The body compensates for low stomach acid levels by producing more of the hormone, gastrin. High levels of gastrin increase the risk of developing esophageal, gastric and pancreatic cancer."

Read more: http://www.livestrong.com/article/128053-acid-blockers-side-effects/#ixzz20FrKcvTT

Harvard researchers express concern over long term suppression of stomach acids:
http://www.health.harvard.edu/fhg/updates/do-ppis-have-long-term-side-effects.shtml
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It must be tough going through all this. I have had severe Fibromyalgia for 12 years now and have suffered similar symptoms to you. The new symptoms of dizziness, loss of coordination and being forgetful are indicative of CFS/FM.  One of the typical causes would be the Lyme bacteria resurfacing from when you were 10; however, it is also possible other bacteria or viruses are causing CFS/FM symptoms. Although the cause of CFS/FM is not known, some research points to the bacteria/virus or mycoplasma connection. Redstar has some great advice, especially with Chiari which causes nerve inflammation and worsens CFS/FM symptoms.

There are many things that helped me get a better quality of life. I think it's great you're focusing on nutrition and food sensitivities as this will resolve your digestion problems and clear up GERD. I got a IGg blood test and am avoiding certain foods, as well as avoiding foods with unbound glutamates, excitotoxins like MSG, and high fructose corn syrup. Having CFS/FM makes one more prone to food sensitivities because it is a disease of the central nervous system along with an impact on the immune system. Also with your gluten sensitivity, especially if a doctor says you're celiac, then you would not have been absorbing the vital nutrients from your food and supplements. The healthier your gut becomes, the better absorption. Some people try the elimination diet beginning with bland foods and adding to see how one feels. My hunch is once our selection of foods changes, it will really improve your life.

I'll send you a message to help directly as I've lived through it all, both medically and naturopathic. Hang in there, there's about 6 percent of the population now with CFS/FM and more and more research is being done. Here's some useful sites to read that really helped me:

Dr. Teitelbaum, www.endfatigue.com
Dr. Mary Myhill, www.drmyhill.co.uk

Also, it is a good idea to get your doctor to check your Vitamin D level. Most doctors are recommending supplementing with 1000 IU a day, and depending on where you live, here in Canada, over 50 percent are deficient.

Laura
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Hey, thanks for the PPI info which is what I take, rather than the H2 blockers--but same problems.

I''ll bring this up to my gastrointestinal specialist this month.  I do have GERD and Barretts syndrome in my family which is a pre-cancerous esophageal condition that is very heriditary.  So I'll probably have to stay on the med.  

I currently eat no acid foods. No orange juice in particular.  I don't eat right before bed.  I have an elevated head of my bed.

I too had the IgG blood testing to see if it might be a factor with my migraines.  My chief neurologist said the tests were fine.  The headache specialist said that I had just a slight food sensitivity to gluten, dairy and eggs and suggested that I go gluten-free first for 4 weeks.  I went gluten-free for 6 weeks and had worse migraines--no connection I'm sure, but it certainly didn't help.

Then after that I wasn't willing to omit the dairy foods because after my stroke I hate to eat and dairy is the single food group that has brought my weight out of a dangerously low BMI.  Oh well.

I was told that since the blood tests had to be sent to a lab out of state, that my health insurance may not pay for it and that it could cost thousands of dollars. I have not yet received the bill for the testing.  But I guess with you being in Canada that issue never came up.

Thanks again for the info.

Sara
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Excerpt from the FDA website - safety alerts for human medical products:

"Proton Pump Inhibitor drugs (PPIs): Drug Safety Communication - Low Magnesium Levels Can Be Associated With Long-Term Use.

Prescription PPIs include Nexium (esomeprazole magnesium), Dexilant (dexlansoprazole), Prilosec (omeprazole), Zegerid (omeprazole and sodium bicarbonate), Prevacid (lansoprazole), Protonix (pantoprazole sodium), AcipHex (rabeprazole sodium), and Vimovo (a prescription combination drug product that contains a PPI (esomeprazole magnesium and naproxen).

Over-the-counter (OTC) PPIs include Prilosec OTC (omeprazole), Zegerid OTC (omeprazole and sodium bicarbonate), and Prevacid 24HR (lansoprazole).

[Posted 03/02/2011]

AUDIENCE: Consumer, Gastroenterology, Family Practice

ISSUE: FDA notified healthcare professionals and the public that prescription proton pump inhibitor (PPI) drugs may cause low serum magnesium levels (hypomagnesemia) if taken for prolonged periods of time (in most cases, longer than one year). Low serum magnesium levels can result in serious adverse events including muscle spasm (tetany), irregular heartbeat (arrhythmias), and convulsions (seizures); however, patients do not always have these symptoms.

Treatment of hypomagnesemia generally requires magnesium supplements. In approximately one-quarter of the cases reviewed, magnesium supplementation alone did not improve low serum magnesium levels and the PPI had to be discontinued."

***

A couple of excerpts from an excellent article "Magnesium: Meet the Most Powerful Relaxation Mineral Available" by Dr Mark Hyman

"A DEFICIENCY IN THIS CRITICAL nutrient makes you twice as likely to die as other people, according to a study published in The Journal of Intensive Care Medicine.(i) It also accounts for a long list of symptoms and diseases — which are easily helped and often cured by adding this nutrient. In fact, in my practice, this nutrient is one of my secret weapons against illness. Yet up to half of Americans are deficient in this nutrient and don’t know it.

I’m talking about magnesium.

It is an antidote to stress, the most powerful relaxation mineral available, and it can help improve your sleep."

"You might be magnesium deficient if you have any of the following symptoms:

Muscle cramps or twitches
Insomnia
Irritability
Sensitivity to loud noises
Anxiety
Autism
ADD
Palpitations
Angina
Constipation
Anal spasms
Headaches
Migraines
Fibromyalgia
Chronic fatigue
Asthma
Kidney stones
Diabetes
Obesity
Osteoporosis
High blood pressure
PMS
Menstrual cramps
Irritable bladder
Irritable bowel syndrome
Reflux
Trouble swallowing

Magnesium deficiency has even has been linked to inflammation in the body and higher CRP levels."

***

"Role of magnesium in the pathogenesis and treatment of migraines.

Mauskop A, Altura BM.
Source: NY Headache Center, New York, NY 10021, USA.

Abstract:

The importance of magnesium in the pathogenesis of migraine headaches is clearly established by a large number of clinical and experimental studies. However, the precise role of various effects of low magnesium levels in the development of migraines remains to be discovered.

Magnesium concentration has an effect on serotonin receptors, nitric oxide synthesis and release, NMDA receptors, and a variety of other migraine related receptors and neurotransmitters. The available evidence suggests that up to 50% of patients during an acute migraine attack have lowered levels of ionized magnesium. Infusion of magnesium results in a rapid and sustained relief of an acute migraine in such patients.

Two double-blind studies suggest that chronic oral magnesium supplementation may also reduce the frequency of migraine headaches. Because of an excellent safety profile and low cost and despite the lack of definitive studies, we feel that a trial of oral magnesium supplementation can be recommended to a majority of migraine sufferers. Refractory patients can sometimes benefit from intravenous infusions of magnesium sulfate."  

Pubmed - PMID: 9523054
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Yes, my neurologist recommended that I take magnesium for my migraines.  I take 400 mg a day.  Do you have any idea what dose is optimal?

Thanks again for your great information.

Sara
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From Dr Hyman's article "Magnesium: Meet the Most Powerful Relaxation Mineral Available":

"The RDA (the minimum amount needed) for magnesium is about 300 mg a day. Most of us get far less than 200 mg.

Some may need much more depending on their condition.

Most people benefit from 400 to 1,000 mg a day.

The most absorbable forms are magnesium citrate, glycinate taurate, or aspartate, although magnesium bound to Kreb cycle chelates (malate, succinate, fumarate) are also good.

Avoid magnesium carbonate, sulfate, gluconate, and oxide. They are poorly absorbed (and the cheapest and most common forms found in supplements).

Side effects from too much magnesium include diarrhea, which can be avoided if you switch to magnesium glycinate.

Most minerals are best taken as a team with other minerals in a multi-mineral formula.

Taking a hot bath with Epsom salts (magnesium sulfate) is a good way to absorb and get much needed magnesium.

People with kidney disease or severe heart disease should take magnesium only under a doctor’s supervision."

***

A good article from Dr David Jockers - Beat acid reflux naturally:

"The most common risk factors for GERD include anything that obstructs the esophagus or stomach region such as hiatal hernia, pregnancy, and scleroderma. Other proven risk factors include obesity, smoking, and alcohol usage. Many prescription medications list GERD as a common side effect so this should always be considered.

The popular belief is that acid reflux is due to an excessive amount of hydrochloric acid in the stomach. New science has revealed that this is not the case. GERD is most often caused by too little hydrochloric acid being secreted by the stomach.

During digestion the stomach secretes acid to lower its pH to around 1.5-2.5 range. More protein in the meal results in a greater need for stomach acid. Individuals with non-obstructive acid reflux are often not able to get their pH low enough. The LES is known to be a pH sensitive valve that initiates closure when pH drops under 3.0. When the stomach does not have enough acid, the LES remains open and acid can spill into the esophageal region and damage the tissue."
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Hey everyone.

Please do a search for:
"The magnesium miracle" by Carolyn Dean MD and ND.
You will find very thorough information  on magnesium.
The only area where the information is questionable is the suggested
"bowel test" for knowing when you have adequate intake of Mg.
This is rather a subjective approach, as most people experience variable degrees of tolerance, which again depends on a large number of mainly G/I
and digestive factors. Therefore the Magnesium Chloride in the form of Transdermal Magnesium Oil, seems to be the safest way to supplement,
avoiding any loose stool possibilities. (Oral intake would be OK for short term constipation, I guess)
I have personally used Transdermal Magnesium Oil, have been sharing with
many people the case lot orders of the MgCl flakes to make our own
( wholesale and much cheaper than ready made) and recommending it for years. I've yet to hear of a single complaint.
The chloride part of the MgCl is used for the production of Hydrochloric acid
( HCl ) as needed.  ( bonus for the majority of GERD sufferers whose available HCL is low -barring other production and delivery HCl, as Red_Star correctly mentioned).
Cheers,
Niko
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I meant " bonus for the majority of GERD sufferers whose available HCL is low*  -barring other HCl production and delivery deficiencies-*as Red_Star correctly mentioned)
No I'm not dyslexic, however, my mind goes ahead of itself sometimes. lol!
Cheers!
Niko
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