The Other Side of Morgellons

"I'm just getting started"

Month: August, 2013

About Me and All My Errors

I’ve been going through this blog and trying to correct the many errors. I started this blog at the same time I started my Lyme treatment.  I had moved back to the USA temporarily to seek medical care and I was staying on the fourth floor of an apartment building with a broken elevator. I had planned on documenting my treatment and focusing on writing about healthy cooking. I was sick a lot of the time and most of my focus and energy went into healing and negotiating the stairs. I was on a lot of medication which  included having to inject my self four days a week and keep a bunch of medicines straight on a complicated schedule. I didn’t have a car so I walked everywhere and had to carry my groceries up the  stairs. I also usually had my 100 pound dog in tow.  I slept on a blow up mattress and when that went flat, I slept on the floor and then the desk for the last month before I could return home. I was sick, home sick, alone, lonely AND antisocial (really bad combination).  My only support was phone calls from London. What I am saying is that it was hard going and I was herxing a lot of the time and my neurological issues flared in a big way. I used the blog more for venting and support as I tried to untangle my feelings. I never got around to talking much about my Lyme treatment or preparing excellent food for you. I really am a very good cook and I’m sorry that I haven’t quite shown off my skills here in this blog like I wanted to. I’ll  eventually get around to that. Theres’s lots of time and after all my mantra is “I’m Just getting started”.

When my Lyme treatment was over I traveled back to my home here in Ireland where much of my time and focus has been put into getting this old house up and running. I still don’t have a desk and my kitchen is in temporary mode. I am in fact still living out of plastic bins. On top of that I have been traveling a lot. Partly because it’s fun and partly because I’ve had to. I am on visa status which makes me an obligate traveler. I have been in five countries (maybe 6) in the last year and a half.

So bear with me as I go back and edit posts. I will eventually get to all the errors. I will also get to writing more specifically about  being treated for Morgellons and Lyme disease.

I have truly had my hands full and it is just now that my life has calmed down to a nice and regular way.

I have already edited a few posts and my “About Me”. I’m still laughing at my third grade level writing in some of my posts.  If you want to laugh too you better go back and see all my errors now before I go back and fix ’em.  Really I should leave them because it’s a testament to how debilitating Lyme Disease can be and the fact that I can spell now and speak in complete sentences is a testament to my recovery.

Here’s the cleaned up version of “About Me” on my profile:

My name is Tina. I am 48 years old. Sometime ago I found my self  sick with Morgellons and Lyme Disease. I was very sick and for a long time I couldn’t find a Doctor that could tell me why I was so sick or to take my health complaints seriously.

Though I had been bitten and paralyzed at a young age by a tick, it never occurred to me that I might have Lyme Disease.

When my skin started acting strangely with non-healing painful and itchy lesions I started to learn that the fibers and specks in my lesions and coming from different parts of my skin were associated with a disease called Morgellons .

This was very difficult because I soon found out that there was not a Doctor in all the land that would treat me. This went on for a while and I became more and more ill.

At one point I learned that many people who have Morgellons and when properly tested do test positive for Lyme and other associated co-infections. I made the decision to seek out the care of a LLMD (Lyme literate medical Doctor).

This was a move in the right direction for me. After being provoked with antibiotics for several weeks I was tested and did  test positive for Lyme. It was a massive relief for me and for the first time I had the right to be treated by a Doctor. It also explained a life time of bizarre symptoms.

Prior to that I was caught in the awful go no where nightmare of living sick and in and out of the emergency room when it got really bad.

The ER would put me on an antibiotic IV and stabilize me with fluids and I would soon be back in the bad position of trying to find a doctor for regular care.

All that changed when I was given the appropriate lab tests and appropriate medical care.

It has been a long and difficult journey getting my health back with a lot of tears and some laughing too.

I was able to recover from the horrible skin and systemic symptoms associated with Lyme and Morgellons but I do have to be careful.

Plant medicine, detox, immune support and diet have been a big part of the recovery of my health but truly my medical care has been integrative as I was treated with some very strong pharmaceuticals in Lyme treatment.

I have been free of Morgellons symptoms for quite some time now but it did involve much work and time. I do feel like I still have some minor issues that are Lyme related but honestly I would be embarrassed to complain about them.

Today, compared to where I was just a couple of years ago health wise, is an amazing and much healthier place. I’m actually healthier than I have been in many years. I am grateful to be pain-free and clear skinned again.

I had such horrific skin symptoms and such a difficult time with Morgellons and getting medical care that I do have residual trauma. I am trying to transform this trauma as I engage the complex issues surrounding Morgellons and Lyme Disease.

Because food is my passion and was part of my healing process I have decided to try to focus on that. It is my opinion that when dealing with chronic illness it makes a lot of sense to make your food as much as part of your medicine as you can. I am not suggesting anyone go with out medical care, only that diet is a good place to start.

I stand for health and food freedom. As our food supply becomes increasingly processed and tainted and our lives more compromised from dealing with chronic illness we are less able to acquire and prepare clean, whole real food. I see that as a vicious cycle.

My dietary choices are not rigid. I eat real food. It doesn’t have to be raw, cooked, vegan, Paleo, juiced or gourmet but it does have to be real, whole, mostly fresh and unadulterated food. All strict diets and the occasional snobbery attached to them is not what I stand for. I also have a lot of respect and gratitude for food and realize that while I struggle to find clean real food there are many on this planet that struggle to get clean water. The word organic, when applied to chemical free food sometimes bothers me and the status that has been somehow attached to it. I do use the term “organic” to indicate to others what we mostly agree organic food is (clean).

You will find a little bit of everything  here as I try to unfold the long story of my recovery and what I did to return to health. More than anything I hope that I can offer you some hope that you can find your way back to health and you can do so in the company of others that are also in various stages of healing ranging from barely holding the pieces together, slowly finding the pieces to put back together and just finding some peace.

When I started this blog I had just started Lyme treatment. I was often sick and very stressed. As I read back now over old posts, I’m horrified (and laugh at myself a lot) at my spelling and atrocious grammatical errors.

To add to that I am barely computer literate.

I have gone back and started editing some of the posts that read like they were written by an 8-year-old. My apologies for the ones I haven’t gotten too yet. I’m hoping you’ll go easy on me. For a long time I had some pretty severe neurological and cognitive issues. I still transpose letters here and there and make mistakes but I see them sooner now than I did before and my spelling , memory and all that in general is 90 percent better.

If you read through the blog from the beginning, you’ll see my spelling getting better and mistakes happening less.

While it is embarrassing, it’s the truth and part of my recovery and part of me.

I am always “just getting started”.

I have been saying that since I was a kid. I was big into swimming and at swim team practice we always competed to see who could hold their breath the longest. I could always hold my breath longer than anyone on the team and that includes even the older boys. My secret was just at the moment I thought I couldn’t hold my breath any longer, I told myself  “I’m just getting started” and somehow mentally that made it easier to keep holding my breath.

Now you know my secret weapon. One of them that is 🙂

Thank you for not laughing at my nutty ways, or my spelling.

clover

Nine Reasons for False Negative Lyme Disease Blood Test Results

Nine Reasons for False Negative Lyme Disease Blood Test Results

From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body’s production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person’s immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient’s antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative — too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient’s immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient’s immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the “right” bands to be considered positive.

I would also like to add this from the ILADS site:

LYME DISEASE IS A CLINICAL DIAGNOSIS. THE DISEASE IS CAUSED BY A SPIRAL-SHAPED BACTERIA (SPIROCHETE) CALLED BORRELIA BURGDORFERI. THE LYME SPIROCHETE CAN CAUSE INFECTION OF MULTIPLE ORGANS AND PRODUCE A WIDE RANGE OF SYMPTOMS. CASE REPORTS IN THE MEDICAL LITERATURE DOCUMENT THE PROTEAN MANIFESTATIONS OF LYME DISEASE, AND FAMILIARITY WITH ITS VARIED PRESENTATIONS IS KEY TO RECOGNIZING DISSEMINATED DISEASE.

Hear From Three That Have Recovered From Morgellons

I would just like to quickly share this message from Mel.  I think it’s always a good thing to hear from others that have recovered from Morgellons.

He and two others will share their stories and also be open to questions

HELLO EVERYONE,

Welcome as always.

Despite a minor health setback, (see Prayers for Mel)

I have decided to hold this conference call as planned.

We will have a panel of three people who have been completely cured of our disease for an extended period of time.

Kathy has confirmed her participation (see A POSITIVE MESSAGE FROM AN ORIGINAL WARRIOR). Our second guest will be confirmed this weekend.

I will be the third, our other guests will tell you their own stories in their own words.

Mine is here for all to read (see MY STORY)and therefore will not take the teleconference’s precious time to tell.

When they are done, every one of our listeners will be given an opportunity to ask questions of our quests, myself and John B.

I hope you will all be able to attend.

The call is Sunday, August 25th at 8:30 PM EST (7:30 PM CST, 6:30 PM MST and 5:30 PM PST).

Dial 1-218-862-1300 and input the conference code 664059.

We believe that these conference calls are extremely important as they provide an enormous amount of information in a short period of time. If for some reason you are not able to attend, no worries – as always, it will appear in the Conference Call Archives.

I look forward to seeing you there!

REMEMBER THOSE WHO DO NOT GIVE UP HOPE GET WELL!!

GOD BLESS YOU ALL,

Mel