Fibromyalgia Diaries and Support for Newbies

This blog is about my new journey with fibromyalgia…

My “Fibromyalgia” almost went away – It is ACTUALLY LYME DISEASE

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I don’t really blog here anymore because I don’t have “fibro” – well, I do I suppose because I have an infection in my muscles
which a lot of doctors write off as “rheumatoid arthritis” symptoms and diagnose people with Fibro. After all, there is no damn test that says we have it, just a bunch of symptoms.

I kept this blog alive for people who are newly discovering they have “fibromyalgia” I have to tell you this….the first time, in over 3 years, I felt the “fibro” pain go away. What it is is an infection in the muscles, it took me a long time to figure this out, but it is a parasite based infection. I was put on an antibiotic called “vancomycin” and BAAAM, i felt like someone was pumping oxygen into my body, literally, my muscles were growing back in strength, and MASS, I couldn’t believe what was happening, and at the same time, my personality was changing back to who I was. This disease, takes your mind, you are not able to identify with yourself and who you really are because there are so many neurological symptoms.

If you are going to mainstream hospitals and letting mainstream doctors, like Kaiser, treat you, then you are never going to get better. Period. And I say that with confidence. If you sit here and research and research and take all of the supplements you can, you are never going to get better.

One thing you are absolutely required to do, and most rheumatoid doctors DO NOT do when diagnosing Fibro, is to RULE OUT LYME DISEASE.

– You need to rule it out with a Lyme PCR – DNA test, no other test…they are for insurance reasons, most of them are not going
to come out positive.

1. YOU do not need a rash, or ever remember to be bitten by a tick.
2. You could have these gene, and just have had it erupt in your body at some point of your life.
3. Do not ever believe an ELISA test or Western Blot at regular hospitals
4. The only person you let tell you that you have Lyme Disease and not fibromyalgia, is a LYME DISEASE DOCTOR.
5. Many doctors assume a lot about Lyme, but the fact is, they don’t know shit about fibromyalgia or Lyme Disease.
6. All of these diseases, are politically based and you are sick for a reason, this is the truth….

Some people really have fibromyagia, and some people are curable, it is up to you to find your cure, your lyme doctor, or your “fibro” doctor to improve your life.

This includes:

1. Skipping all of those blood tests that come out normal
2. Seeing an endocrinologist for all of your hormone imbalances
3. Checking your metal levels, you are highly toxic, you need to detox to make your life more manageable
4. Ever hear about candida?
5. What is your digestive health like? Have you ever had a stool test from Metametrix? I bet not….
Forget the IBS, it is probably parasites, or candida – try some natural anti-parasitics and yeast busters like oregano oil.

Some important supplements (it’s getting late, I have to wrap this up…)

1. Caprylic acid (this naturally kills yeast, try it, it will help your stomach)
2. Probiotics
3. antiparasitics – fix your stomach – this can do it – 80% OF YOUR IMMUNE SYSTEM IS IN YOUR STOMACH, this is where you develop
all of those “chemical sensitives” as well.
4. natural anti virus herbs and capsules (you have tons of infections in your body that are not showing up on blood tests)
5. Check your nutrition levels (find someone that does Zyto testing, check out what is REALLY going on in your body, blood tests,
are the world for environmental illnesses and infections, your MRIs will all be normal.
6. Buy some activated charcoal for a natural detoxer ($10 bucks at the health food store)
7. Buy some CoQ10 for your muscle health – buy a quality brand
8. Try electromagnetic therapy for some energy or to kill things in your body at a low frequency
9. Try an EMEM Bulb rife machine – probably around 500 bucks and follow rife treatment guidelines
10. Try some antibiotics, and see how you react, if you react in anger, or any emotional problems, that is called a “die-off” or “herx” reaction and you are killing something in your body which is releasing a toxin into your body that is making you act this way – this is a good sign actually, because it means you are infected.

Get a Lyme PCR. Google Igenex labs. Also go to lymetap.com to get funding for your tests if you don’t have insurance or are on a budget, the tests are expensive and it is easy to get approved. They will pay for 70% of your tests.
That is a great deal and how i got my funding for my tests.

I hope this helps someone, I wish I wouldn’t have believed my doctors, I was healthy my whole life, and knew I had Lyme from the get go, my doctor screwed me big time, and I wish I could find a lawyer to sue her, she deserves a slap on the wrist for what she did to my life when I knew what was wrong. The medical system made me believe I had fibro for over 2 years, and thats why I had this blog, I took supplement after supplement trying to fix myself, when all i needed was some antibiotics for a few months. This started when I was 28, and now I am going on 32, and this is not near over…..

Good luck.

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Written by Mobile Speech Pathologists

March 27, 2012 at 10:06 am

Most Updated Post – It wasn’t Fibromyalgia – it was LYME DISEASE (please read if you have fibro))

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If you have fibromyaglia you are obligated to do a Lyme PCR test. I was diagnosed with fibromyalgia, even after telling my doctor I had these red rashes that appeared underneath my skin and she wrote it off. She even seen me go from doctor to doctor, to doctor, and doctor, just to stick me in chronic pain management and diagnose me with “fibromyalgia”

I’m posting here to say, I remember when I had ALL of the “fibromyalgia” symptoms. I’m MUCH better now.
I used to react to the weather, I used to feel this throbbing in my head, had major anxiety, and just couldn’t even ben in a room full of a lot of people. My muscle pain was (and still is) relentless, and so is the pain in my bones. This WHOLE TIME, I thought I could have had Lyme Disease, but after I was given the tests, they were negative. Could you believe what tests though? The ELISA, which is considered THE WORST LYME TEST IN THE WORLD! My doctor didn’t tests were highly faulty, she just said “you don’t have Lyme.” She also didn’t tell me about how important it is for early treatment with Lyme Disease. The ONLY test anyone should be getting if they suspect Lyme Disease, or Fibromyalgia is the LYME DISEASE PCR test. If you have a Fibro diagnosis, please, please, please, pleaseeeeeeee, get a LYME PCR test, what would it hurt to rule out. I’m afraid of how many doctors keep diagnosing patients with this bogus diagnosis – we need to figure out which is causing the fibro symptoms, I’m sure it is some virus, and I’m afraid that probably 80% of people with Fibro, actually have Lyme Disease, to know for sure, you can only be evaluated by a Lyme Disease doctor. Nobody else.

Lyme comes in “stages” So trust me, you don’t want to think you have Fibro Fog when you actually have neurological Lyme Disease that is going to grow worse and damage your brain. Since there is major politics behind the validity of the tests, as well as the treatment, one can hardly count on their doctor anymore to protect their health when it comes to this disease, at this in my experience it has been this way.

If you’ve been diagnosed with Fibromyalgia, or Chronic Fatigue Syndrome, although both very real diseases, they should not be given as a diagnosis without ruling out the chance of having Lyme Disease, which to me, is almost the same disease. My “Lyme Disease” stayed in my upper body for two years before it traveled to other areas. Had I did better research, better than these doctors we have at these hospitals, I would have saved myself from all of this.

I was going to delete this blog all together because I started a Lyme Blog, but I’m going to leave it in hopes of saving someone’s life.

Get the right diagnosis, and figure out what is wrong, in the meantime, use an infrared sauna if you can, get some cat’s claw from whole foods, and start some detoxing protocols, even if you don’t have Lyme – detox you body if you have fibro of CFS, that’s KEY, key to mental health, key to keeping it going………detox through your skin with epson salt, infrared salt, or use binders like Zeolite clay, or Charcoal, and feel the difference!

PS. If you need to get tested, the lab to request the test kit is called Igenex in Palo Alto CA.
If you need help paying for the Lyme tests, Google “Lymetap” program and you will get a program
that will pay for 70% of the lab fees associated with initial Lyme testing.

Fibromyalgia or Lyme Disease?

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I tried to connect all of the dots, to figure out what I really had because I wasn’t getting a diagnosis. I went all the way back to a bite I had, it was circular and it was really bright. Since Lyme Disease is the great imitator, I always thought it could have been it, especially since I frequently ran trails in many wooded areas near my home. I asked my doctor for a test and she declined. I even asked her twice, because I thought that’s what I had. I had swollen lymph nodes, abnormal periods, insomnia and severe neck pain (which are all early symptoms). In my late stages of getting ill, I got rid of some symptoms, like heel pain, and this weird sounding buzz around my head that I carried for two years.

Now, I just have this headache and my head is very, very tender at all times, just like the rest of my body. To point out, my late stage symptoms were memory loss (could have been ‘fibro fog’), confusion, congitive problems, word retreival problems, stuttering, severe circulation problems in my arms and legs ( I wore arm braces to bed so my circulation wouldn’t get cut off), and my muscle weakness, spread everywhere, slowly, it truly was a horrible expereince. Once I got on anitbiotics (1.5 years into it), for a bladder infection and felt EVERYTHING going away. It was truly amazing, but this was before IT spread into every muslce of my body, including brain, fingers and toes. If I were to have gotten antibiotics earlier, or if my doctor would have referred me to an infectious disease specialist earlier, I could have saved my body/mind, which is damaged to some degree now.

I am specially worried about my cognitive functioning, as I have to still write down tons of notes to get things done. I mix up my words often, have a mild speech problem and continued bone pain (in my entire body) which is severely painful. I’ve just been diagnosed clinically so for with Lyme Disease but did come up positive for all of the coinfections viruses. The blood tests for Lyme Disease are tricky. Many tests don’t come out positive. The specialty lab that does the Lyme Disease tests is called Igenex, and is located in Palo Alto, CA. I’m waiting for a lab result from them.

My Western Blot came out negative once, then when I did it again, one band came out positive. According to CDC you need 5 bands to be positive, but that’s probably for insurance reasons. I’m going to have my blood checked from a speciality lab since my reaction to antibiotics was so great.

Written by Mobile Speech Pathologists

May 10, 2011 at 4:37 am

Solution for Insomnia – Mineral Salt

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Sleeping pills are NOT the answer to insomnia because they upset the Serotonin and Melatonin levels in your brain which affect sleep and moods.

I’m posting this because I’ve did a study on the affects of Khali Pos…on myself. Since I’ve had Fibromyalgia, I have had many problems with sleeping which for the most part are being managed by a gluten-free and yeast-free diet. I still don’t reach restorative sleep. When I have a dream, I always journal it and see what the reasons behind it were. It looks like all of the arrows are pointing to Kali Phos. Someone recommended this to me and I purchased it from Amazon.com for $11 bucks! This stuff has some type of soothing affect, it relaxes your mind with no side effects and you will have, very deep, refreshing sleep. When I was taking it consistently, I had dreams every night and would wake up in a lot less pain and have more energy throughout the day.

Insomnia is a condition that is becoming more prevalent in modern society. Stress, lack of proper exercise(30 minute brisk walk 3 times per week) and our diets are very refined, loaded with saturated fats and filled with preservatives and lack fiber. There are numerous other causes of insomnia:

· Over active brain.

· Over exertion.

· Pain.

· Excessive amounts of tea, coffee, alcohol and narcotics.

· Depression

· Inability to switch off mentally.

Treatment.

A deficiency of a mineral salt is one of the main causes of insomnia. This can be replaced by a product called Khali phos which may be obtained at health stores. It is natural and non-addictive but Valerian Root is also an effective remedy.

· ½ teaspoon of cinnamon sprinkled on milk works well.

· Lavender oil rubbed under the feet is an effective therapy.

· Dried Lavender in your pillowcase also works.

Substituting Sam-e with EPA/DHA supplement

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I did a transition from Sam-e to a high potency EPA/DHA supplement and the results were so amazing I had to blog about it.

All of the “head symptoms” I was having are gone. I had to drop Sam-e because it was too harsh on my stomach and it also made me not want to eat….for weeks at a time.

I now have my appetite back. I thought I initially needed the Sam-e for osteo pain that the fibromyalgia was giving me, but it looks like it was the added serotonin inhibiter that was reducing my pain. WEIRD.

I started taking a Calcium/Vitamin D supplement (a more absorbable one) and my osteo pain has decreased significantly (also in combination with folic acid and biotin) which gave me reason to kick old Sam-e in the butt.

After I transitioned to the EPA/DHA supplement, I noticed my anxiety symptoms, as well as the pain I get in the heels of my feet stopped. I also feel like my “fibro fog” isn’t so bad. My concentration is better and I’m not slurring/stuttering my speech or having a hard time retrieving words, like I sometimes feel with some of fibromyalgia’s “head symptoms.”

Definitely try a high potency DHA/EPA rather than Sam-e to see if its “less harsh” on your body and mind. I also read about another study that stated the patients said they also had better concentration abilities.

Written by Mobile Speech Pathologists

September 21, 2010 at 7:37 am

30 Questions for National Invisible Illness Awareness Week

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30 Questions for National Invisible Illness Awareness Week

National Invisible Illness Awareness Week September 13-19, 2010

The National Invisible Illness Awareness Week organization has asked all bloggers to write and post answers to a standard 30 question poll they’ve created for this week. I have, and you can find my answers below. If you have an invisible illness, please support this week by posting your own answers on your blog or in the notes section of your Facebook page.

Aman’s 30 Answers

1. The illness I live with is: Fibromyalgia and Chronic Fatigue Syndrome

2. I was diagnosed with it in the year: 2010 (Feb)

3. But I had symptoms since: 2009 (March)

4. The biggest adjustment I’ve had to make is: my diet. I’ve became allergic to a lot of food, and changing
my diet along with having to cook fresh meals everyday can get very tiring, especially when you have chronic fatigue. It’s a catch 22 really, because if I don’t eat on time, my body also starts acting strange and I get an array of other symptoms.

5. Most people assume: I have no idea. I get mixed signals.

6. The hardest part about mornings are: sometimes rough, and sometimes tolerable. Imagine a 3-day bender hangover, every morning. Mornings are always when I know I might be paying for deviating from my diet the day before, or when I know if I did something out of the very strict regime that I have to keep to stay at tolerable levels of pain. Everyone that has fibromyalgia has rough mornings.

7. My favorite medical TV show is: The Doctors Show, even though I hardly watch TV. Its the only TV show that I watch which is medically related.

8. A gadget I couldn’t live without is: my IPhone.

9. The hardest part about nights are: sometimes I have a hard time falling asleep. That’s usually if I was eating something that made me stay up, like yeast makes me stay up…beer or pizza would do it, or if something was stressing me out. Most of the time, I am up because I am in pain…

10. Each day I take 15-20 pills & vitamins.

11. Regarding alternative treatments I: believe they are just as legitimate as, and in many cases more helpful than, prescription drugs you get from a pharmacy. They need to be incorporated more into traditional medical care. The last two sentences I typed are the largest understatements I could possibly make.

12. If I had to choose between an invisible illness or visible I would choose: I would choose invisible. Our society is very ignorant when it comes to medical illnesses in my opinion. Its pretty bad when you have an invisible illness, but I know if you had a visible one, you still would be treated differently. I would like the comfort of knowing that I would blend in with the crowd and not having anyone know.

13. Regarding working and career: I create my own schedule to work around my good and bad days. It took me a long time to be able to get to this level of “functioning” since taking care of myself and my symptoms was really more than a full-time job. Now I am working more and more and hoping that I will continue with work and eventually be able to work full-time again without any problems.

14. People would be surprised to know: that having something like this, really breaks it all down for you. It shows you who the important people are in your life. It has also made me treasure each and everyday. Its been a tremendous experience, growing, and being humbled in this way. I really have had many “normal” things taken away from me, and dealing with that on its own was tough to do. It is true with the challenges, you grow in so many ways…and that is really ironic.

15. The hardest thing to accept about my new reality has been: The change. Its been the hardest to accept. Facing this new reality almost feels like a war, because if accepted, that means I would have given up. I have taken aggressive steps to try to renew my health and different systems of my body so I can be pain free one day again.

16. Something I never thought I could do with my illness that I did was: finish my undergraduate program at Utah State. It was very challenging getting flares, then having the discipline to want to study. It was also hard to concentrate since I would get “fibro fog.” I did the best I could, and all of the pressure from school, made my pain worse…but I finished, and when I was done, so much of my pain went away.

17. The commercials about my illness: Are not representative of what it is like to live with fibromyalgia. The commercials are characterized by back pain, when in reality, this is a complex pain syndrome that affects multiple systems of the body.

18. Something I really miss doing since I was diagnosed is: going for a run. my bones hurt. my joints hurt, and its very difficult to even walk up a flight of stairs. I feel like I’m 80. No really, that’s what my bones feel like.

19. It was really hard to have to give up: all the food I’ve since become allergic. Dairy, gluten, breads, beer, pizza, asian food, chocolate, yogurts, smoothies, Starbucks, caffeine, sodas, yeast products

20. A new hobby I have taken up since my diagnosis is: blogging

21. If I could have one day of feeling normal again I would: rise early, go for a run, hang out in the city all day, eat pizza and chocolate cake and all the other goodies I’m allergic to.

22. My illness has taught me: nothing is promised.

23. Want to know a secret? One thing people say that gets under my skin is: I will openly admit that while most people with an invisible illness hate the line “well, you look great…” I actually enjoy it. This diet really has my skin looking better and even though I’m feeling like I just got beat up, at least I don’t look the equal.

24. But I love it when people: call me, write me, hug me, invite me (even when they’re not sure if I can go)

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass…

26. When someone is diagnosed I’d like to tell them: Change your diet, right away. For me, it was a matter of staying in bed all day, or feeling like 50% of me again.

27. Something that has surprised me about living with an illness is: How ignorant we are as human beings.
I just cannot explain what I’m going through to a lot of people, without them sounding bewildered. Many Americans, sorry to say, are extremely uneducated about science and medicine.

28. The nicest thing someone did for me when I wasn’t feeling well was: to come over to my apartment, do my laundry, put my clothes away, make me food…. it was my mom ❤

29. I’m involved with Invisible Illness Week because: it’s important that people understand there are folks out there that don’t look sick but could really use your help, assistance, prayers or understanding. You should reach out to these people with positive energy and never bring any negative energy around them.

30. The fact that you read this list makes me feel: happy, and yet a little uncomfortable. I’m still getting used to the idea of this online diary I call my blog.

Written by Mobile Speech Pathologists

September 19, 2010 at 7:37 am

Posted in Rants

Folic Acid & Biotin

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I accidentally bought this vitamin bottle called B-100 Complex instead of the regular B-Complex and noticed a HUGE change in how I feel when I take it. What I noticed was that there was 800 mcg of Folic Acid in it as well as 1000 mcg of Biotin.

I always keep a close eye on my symptoms and could definitely say that Folic Acid and Biotin are helping my muscles (they burn less, they feel more stabilized, etc)

I know Fibromyalgia is very complex and unique with everyone, but these two supplements are definitely something you should try if you want to find more ways to stabilize your pain naturally.

Written by Mobile Speech Pathologists

September 19, 2010 at 2:46 am