Our journey back to health

Back after summer break

2009-10-02T18:12:00.000-07:00

Sorry for the delay in posting - I hit a writer's block along with summer travel, a bout with bronchitis, and just plain confusion about what to share given the glut of info that has been coming to me.

Alison is still having real challenges. Thyroid medication made her start losing hair in clumps. She eats something that doesn't bother her one day and causes a rash another day. She has some energetic days and others where she can barely function.

Given the lack of help from traditional medicine we are looking into alternatives. She was testing by a practitioner of kinesiology who does homeopathy. It came up that she might have Valley Fever. Alison is going to work with her and see how things go. I have also given her the name of an amazing healer that I worked with a couple of times. She has an appointment with him soon and I am hopeful that he can get her back on track. He completely helped me when I had just fallen into an energetic hole.

I am still taking in the info I got from the movie "Under Our Skin" about the medical politics and treatment for Lyme. I pray that more people will go see this movie. It is very well done and a lot of the information is important for anyone who loves being in the outdoors. You can protect yourself against Lyme. It mystifies me how much press is given to West Nile Virus when there are hundreds of thousands more people with Lyme than West Nile.

I look at the subtitle for this blog - Our Journey Back to Health - and have to say that the journey is still unclear, the signposts fuzzy. Alison and I just keep trying to find answers. We eat healthy, rest and exercise, do the research, maintain a positive attitude, but I have to admit it is sometimes quite difficult to deal with the fatigue, the pain, the brain fog, and the lack of knowing. Your comments or sharing your stories are very much appreciated.

. . .and the beat goes on. . .

2009-06-17T20:42:00.000-07:00

Alison had her appointment today with mixed results. She tested positive for reverse T3 which causes the normal T3 that her thyroid produces to not turn into usable T4 for the cells. Also her Iodine is low. But here's where we come to the fun part - at the last visit the doctor figured out the day and time that Alison should have her blood drawn for the hormone tests. So Alison went exactly when he said (she and I both heard the same thing) and then the doctor says she didn't go on the right date. All her hormones were very low but he wants to redo that test. He also didn't answer her question about what treatment there would be for the sarcoidosis. We understand this is a very complicated, multi-systemic illness but it can be so frustrating and difficult getting the help one needs.

At least she can get started on the compounded T3 which should help her energy levels.

I found an informative and comprehensive article on one of my support sites and will include the link in the body of this post and to the right in the "Important Links" section.

http://www.prohealth.com/library/showarticle.cfm?libid=13020

ProHealth has been a fountain of information from me for a long time. It started out as ImmuneSupport.com. It's a great place to sign up for their newsletter so you can keep informed on the latest research into Fibromyalgia, ME/CFS, Lyme, Lupus and other Immune System chronic illnesses.

As for me I continue to improve now that I have stopped the Flagyl, improved my diet, started taking Diflucan, and am drinking a lot of water with fresh lemon or lime in it. I am very grateful to be taking the Grapefruit Seed Extract instead of generic Flagyl. My doctor said that studies have shown that it helps break down the cyst form of Lyme disease.

Exciting news - the documentary Under Our Skin is being shown around the US. I am going to see it the end of this month in San Diego. You can find out if it is playing near you by going to their web site http://www.underourskin.com . There are some trailers on the site and a brief synopsis of this important film about the medical politics around Lyme. Check it out.

A lesson learned.

2009-06-16T09:03:00.000-07:00

Well I got a good kick in the pants. Even though I knew that being on long-term antibiotics for the Lyme & co-infections meant I had to maintain a yeast-starving, low carb diet - somehow a lot of little excuses to eat a small bit of this or that turned into a major candida flare-up. If you can learn a lesson from my mistake please do so. I have been so sick - severe brain fog, weak and shaky, nauseous, headaches, lots of pain - it was not worth the little "treats" I allowed myself.

So I am back on the diet that I know works for me. That consists of lean protein, lots of veggies, a small amount of fruit and whole grains, and kefir every day. What has to go is anything that has flour, sugar, or is processed. No more excuses for the tiny sample of blueberry muffin at the grocery store. All those tiny bits of regular frozen yogurt, breads, etc. added up to misery.

As for Alison, she seems to be doing better. Her food sensitivity tests show she is allergic to eggs and sensitive to most dairy so there will be some dietary changes for her. Her most recent CT scan showed that her lymph nodes are a bit smaller, so that is headed in the right direction. She goes back to the doctor this week to learn the results of recent hormone and other tests.

Alison and I are both eating as gluten-free as possible. There are a lot of yummy substitutes out there now. One of my favorites is Blue Diamond's Nut Thins. They are delicious with hummus, cheese or peanut butter. A great treat for those with celiac disease.

Virus-free at last!

2009-05-28T20:37:00.000-07:00

Not the physical virus kind - but the computer virus kind. Spent about 3 hours today connected to India by phone or shared access. It was pretty cool watching stuff happen on my computer that was being directed by someone thousands of miles away. Now my 5 year old PC is running like a spring chicken again - big hurrah!
So please excuse the big delay in posting. I'll be back doing research again and trust that my new anti-virus program will keep Mr. PC happy and healthy during my Internet perusals.
The latest I know about Alison is that she seems to be feeling more energy from the increased dosage of CoQ10 and the custom formula (I think it's called FlexRight or something like that) from the Holtorf clinic. She also has transfer factor and d-ribose that she will add to her regimen. She's trying to do only one new thing at a time so if she has a reaction she will know the culprit.
And the big news is that her second Lyme test came back negative. Even though false negatives are a huge part of Lyme tests, I am hoping that this means she really doesn't have to deal with Lyme on top of the Sarcoid and Chronic Fatigue. That would be a blessing.
Thanks for all your prayers, kind thoughts, and support. It means so much to us!

So much to ponder. . .

2009-05-11T21:48:00.000-07:00

Lots of info from the doctor at the Holtorf Medical Group. The doctor went through Alison's extensive new patient form, examined her, asked a lot of questions, and talked about Chronic Fatigue, Fibromyalgia, Lyme disease, adrenal and thyroid issues, opportunistic infections taking advantage of a compromised immune system, candida, Epstein-Barr, hormone imbalances and the apparent dysfunction of the mitochondrial inability to utilize ATP correctly (which causes Alison to take hours or days to recover from exercise rather than minutes).
Next step is to get some more tests done to confirm or rule out some of his suspicions. Meanwhile she has some supplements to take to help bring her energy levels up. She has to make some big changes in her diet, switching to a managed insulin release/low glycemic diet. No coffee (ugh!), dairy, wheat, sugar, etc.
It's a lot to take in and manage but we feel this is a big step in the direction of Alison's return to health.
One question on my mind - this is so much of what I have also, could there be a genetic link? Time for more research.

Appointment day is here!

2009-05-10T22:21:00.000-07:00

Hurray for the wait list. Alison's appointment at the specialist is tomorrow instead of June 10th. I have a good feeling about this, that it is the answer we have been praying for.
Check back to follow Alison's treatment plan and progress.

Hurray for the wait list

2009-05-05T08:47:00.000-07:00

We thought Alison was going to have to wait until her June appointment, but a friend who goes to the clinic recommended that we put her on the waiting list. She has already received a call for an earlier appointment which she can't make because she is teaching that day. We feel certain she will be able to get the help she needs earlier.
A note of good news - her last CT scan showed a reduction in the size of the lymph nodes. I have Alison on a lot of prayer and healing meditation lists and believe that it is helping her. Keep those prayers and healing thoughts coming please!!
I have been on the full Lyme protocol for almost six weeks now and have had some better days - yeah! Still catching too many bugs, the most recent being my granddaughter's cold. But to have hope of healing is a wonderful thing which has been long in coming.
Happy Mother's Day to all those fantastic Moms out there. It is surely one of the most important, challenging, and rewarding jobs out there.

Found a forward-thinking specialist

2009-04-27T09:24:00.000-07:00

After hours of research I have found a clinic that specializes in Lyme, Sarcoid, and other chronic illnesses. Alison is going in June unless they have an earlier cancellation.
The clinic is the Holtorf Medical Group and they are the forward-thinking specialist I have been praying to find for Alison (and possibly me if I need more help than I am getting from current doctor). They are familiar with and use the Marshall protocol where appropriate. A good friend with fibro went to the clinic on Friday and was very happy with his appointment. He is on some new meds/supplements and is already noticing a difference.
Quick update: Alison is still experiencing rashes, severe energy fluctuations, hormonal issues, pain, and shortness of breath. I seem to be stabilizing on the antibiotic regimen. Had a number of good days last week. Yeah!
Challenging news - the clinic is $395 for the first 2 visits and $295 a visit after that. Abundance Universe . . . help!

This too shall pass. . .

2009-04-10T23:46:00.000-07:00

You know that old saying about being careful what you wish for because you just might get it? Now that I am on the full protocol to treat the Lyme disease it is making me sick enough that I sometimes wish I never started it. The pain has increased, the fatigue is beyond belief, and I now have intermittent shakes and what I call "energy meltdowns." Supposedly the good news in all this is that it means the Lyme cysts are being broken down and dealt with by the antibiotics (with some help from my immune system - we hope!). It was one thing to read about all this but is another to be experiencing it on a daily basis.

One of the things I feel good about in my life is doing the research for this blog. I sincerely hope that people will be helped by the information I find and share. Feedback is appreciated as is passing the link for the blog along to others. You never know who might receive beenfit from this.

Blessings of good health to all.

The Link - cell wall deficient organisms?

2009-04-05T22:16:00.000-07:00

Here is a link to an article that gives very detailed, clinical information on Sarcoid treatment, with reference to its similarity to Lyme in having cell wall deficient organisms as a causative factor. I believe this is the link I have been looking for between Alison's illness (sarcoid) and mine (chronic Lyme). We may both have this "genetic factor" in our immune systems that Dr. Trevor Marshall discusses.

http://www.prohealth.com/library/showarticle.cfm?libid=10570

This has been a tough two weeks for Alison. She has been extra busy with a big spring horse show. The second week of the show she caught the flu from some of her students, then the rash started coming back, first on her hands and then her face. She has been quite miserable. I hope that this information in the above-linked article will help her get the treatment she needs.

The controversy over Lyme treatment

2009-03-30T17:30:00.000-07:00

In this modern age of sophisticated medical testing one would think that the ability to get diagnosed for an infectious bacterial agent like Lyme disease would be a slam dunk. Unfortunately for many people, including me, this is not the case. The article that this link takes you to is a bit of a read, but it contains very helpful basic information. If you or someone you know has symptoms of debilitating fatigue, muscle and joint pain, memory loss or brain fog, or changes in eyesight among other things, please read this article and find a doctor that is a member of ILADS or a Lyme-Literate MD. If you do have Lyme or a co-infection, the sooner you can get treatment the more chance you have to recover.

http://www.autoimmunityresearch.org/lyme-disease/

One of the things Dr.Taylor mentions in the article is that Lyme is often misdiagnosed as MS, Chronic Fatigue, Fibromyalgia, ALS, etc. I am researching to see if I can find a link between tick-borne illnesses causing immune system dysfunction which leads to other diagnoses such as those listed or a furthering of the disease process such as Alison's diagnosis of Sarcoidosis.

The diagnosis and treatment for Lyme is not going to change until people stand up for a changed attitude in the medical and insurance company communities. Please keep passing on this blog link to get this information out there. If it saves one person from the nightmare I have experienced it will be well worth it. Thank you!

Article in Monterey CA Herald on Lyme

2009-03-29T20:14:00.000-07:00

There is a decent article on Lyme disease in the Monterey California Herald from Saturday 3/28. Here is the link-
http://www.montereyherald.com/ci_12018276?source=email
Also, thank you to everyone who has donated. Because of your thoughtfulness we are almost half way to our goal of $4200. Please share this blog link with people, not only because we hope they will donate, but because we need to get the information out there that people are suffering needlessly. As Laith Agha says in the Herald piece, he was lucky that he was diagnosed early. In my case I have been misdiagnosed for over 40 years which has had a severe impact on my life.

No more rash - yeah!

2009-03-25T10:47:00.000-07:00

At last the rash is gone. Alison is taking a break from meds to let her body regroup before she goes back on the doxyclycline. No more sulfa drugs for her!
The current program is to be on doxycycline for a few weeks then retest for Lyme using Igenex labs in Palo Alto. People whose first Lyme test comes back negative but who have a lot of Lyme symptoms often have a positive test after a course of antibiotics. Conventional wisdom is that the immune system is so compromised that it isn't creating the correct antibodies to the Lyme so the test comes back negative. The antibiotics assist the immune system to start fighting the Bb spirochettes.
Also Lyme can morph among three forms - the spirochette, a cell-wall deficient organism, and a cyst stage that is resistant to antibiotics.
It is a complicated disease that is creating real problems for a lot of people. I just had another person tell me that she went to her doctor with symptoms, told him about her tick bite and rash, and he STILL said, "There is no Lyme in CA so we don't have to test you." What in heaven's name is going on???
This is part of the reason for doing this blog. We need to get the word out to people so that they can insist on and receive the testing and care they need. Lyme and its co-infections can affect any age group. There is a recent article in the Off 68 feature of The Californian (www.thecalifornian.com) about a young boy who is trying to recover from Lyme while attending school. His story has a happy ending because he is getting treatment.
Please feel free to share your stories in the comments section of this blog.

An alternative to PayPal

2009-03-11T14:22:00.000-07:00

A number of people have contacted me saying they want to donate but don't feel comfortable using PayPal. If that is the case with you please feel free to contact me (Jan) at itsmejan@gmail.com and I will be happy to provide a snail mail address to you.

I am gathering information from a number of sources that may support my theory that tick-borne illnesses are the underlying cause of some chronic illnesses. With the brain fog it sometimes takes me longer to organize things so please check back or sign up as a follower of this blog. You can sign up by clicking the link of the right panel.

Thanks for your support, interest, and patience!

Update on Alison & photos

2009-03-08T13:53:00.000-07:00

The rash is slowly going away but a weird thing has been happening. When Alison eats it sometimes makes the rash flare up and itch like crazy. There is no rhyme or reason to it - one day she can eat lasagne and the next day she has a reaction. At least she is off all medication except the Prednisone.

This stuff is crazy-making!! I hope we can get some answers soon.

Here are two photos of Alison in happier times and one of the rash on her face and neck.

Heartfelt thanks

2009-03-05T14:06:00.000-08:00

Words fail to express our gratitude for the donations Alison is receiving. I have contacted my Lyme-literate doctor who is a member of ILADS to see if she feels she can help Alison. She has been off of all drugs for less than a week and her rash is just starting to subside.

Please be kind enough to pass on this blog link to anyone you feel may benefit from the information and/or who may wish to help Alison. We may not be able to save the starving children around the world or even solve some of the seemingly-insurmountable problems, but you can directly help one person who needs it. Thank you with love from Jan

Western & Eastern medicine

2009-03-04T18:06:00.000-08:00

PLEASE – donate $1 to $10 on Alison’s PayPal button at right to help with her ongoing medical bills which are growing. As her Mom I thank you from the bottom of my heart.

I started this blog because I had this intuitive feeling that either tick-borne or mosquito-born illnesses may be the underlying cause for some of today’s mysterious and chronic illnesses. When Alison was diagnosed with Sarcoidosis I spent hours researching medical sites on the Internet and reading posts on support group forums for Lyme, Sarcoid, Fibromyalgia and Chronic Fatigue.

First let me say that I am not a doctor or nurse. I was a practicing massage therapist so I do have limited medical training.

A couple of things really stood out in my mind after all that reading. One was that there seemed to be a marked difference between the allopathic-based medical sites and what I was reading on the support group forums. Case in point, on the Mayo Clinic site they say that up to 80% of sarcoid patients go into remission with minimal or no treatment. Yet what I saw on the numerous forums was a large number of people who had simply given up going to their medical doctor because they were not getting better and the treatment had so many side effects. (The current treatment is to try ibuprofen, if that doesn’t help then try Prednisone, if that doesn’t work or after the course of Prednisone start immune-suppressing chemotherapy drugs in small doses such as Methotrexate.)

Now don’t get me wrong – I am not against Western medicine. But I do question why it makes sense to suppress an immune system that is already stressed and going haywire. Doesn’t it make more sense to find the underlying cause for the dysfunction and address that? This is the approach of Traditional Chinese medicine, Ayurvedic medicine, and indigenous people around the world. The help that I am receiving for Chronic Lyme and co-infections is a combination of antibiotic therapy, specific supplements and herbs. The supplements and herbs both deal with the underlying causes and support my body as it goes through long-term antibiotic therapy to kill the organisms.

My intuitive side tells me that Western medicine is often connected to an underlying belief that we can conquer nature, whereas Eastern medicine believes humans are part of nature and that we should look to nature to restore balance and heal. The other aspect of Western medicine is its altering natural substances so that the new “drug” can be patented. I want to put stuff in my body that it can recognize and use.

My latest thoughts

2009-02-28T17:11:00.000-08:00

Alison's rash continues to worsen despite many doses of Benadryl and discontinuing the medication. This morning she took 25 mg of Prednisone to see if that would help but the rash has gone onto her lips and inside her mouth.

One thing we talked about is how you expect your body to react in a way that is "normal" or usual for you, but when your immune system goes haywire all bets are off. Something that normally would not bother you will tip the scales and you'll have a reaction. Or something that would usually help remedy a symptom does nothing. It can be downright frustrating and certainly overwhelming.

I advised Alison to start detoxing so she is juicing and eating light.

For me, I am staying home and taking it easy on this beautiful day in order to travel tomorrow without totally messing up my energy levels. A day of traveling when I am feeling well can put me in bed for up to two days, and I am still getting over my third respiratory infection in two months. I wish it were different but this is what I, and many people with chronic illness, live with every day. This is the time that I count the blessings in my life and say prayers for others who are facing challenges. It definitely helps pass the time and makes me feel positive.

I also wonder at times like this, just what the heck is causing all this chronic stuff. My talented Qigong Grandmaster acupuncturist says my liver, spleen and kidney energy are "very bad." But after a year of treatments I have to admit it only helped a little. Can acupuncture really help get rid of the Lyme Bb spirochettes? For that matter, can acupuncture help with parasites and other beasties that we pick up? I know it can help with pain, normalize the immune system, etc., but can it actually kill those little guys that are hiding all over in a Lyme patient's body? It didn't work for me but then who knows how sick I would be if I hadn't done acupuncture off and on these last five years.

Well enough musings for today. Next post comes from beautiful Port Townsend WA on the Olympic Peninsula.

The rash - part two

2009-02-26T17:13:00.000-08:00

My dear daughter now has this rash all over her hands, face, and legs. Feedback is that it is probably from the sulfa drug she has been taking. But here is what is so hard to deal with - she has been to three doctors and none of them has helped her.
So my question of the day is - when did doctors become so useless at some things? I'm not saying they are not good people or that they are bad doctors. Has our knowledge of the body become so complex or are they so overworked and tired or what? Hundreds of dollars later and they have no idea what it is or how to help her other than saying take Benadryl and use cortisone cream. This is the same crap I have dealt with and it seems to be getting worse.
A case in point. A few years back my husband started having pain radiating down his arms, weakness in the arms, and was falling down. We went to our local general practitioner who is considered one of the better doctors in our small town. He took some blood tests and said you might be anemic. He went on iron supplements but only got worse. After 4 months of doctors appointments and my husband getting worse all the time, I finally said to the doctor, don't you think he should see a neurologist. The doctor said sure and referred us to someone. He seemed happy to pass us on to become someone else's problem.
Well this amazing neurologist took one look at the way my husband was walking and said, "You have a severe neurological problem." Within one hour we were getting MRI's and in four days my husband was having spinal surgery to remove a disk that had blown out into his spinal cord. He had permanent nerve damage the rest of his life due to the delay in diagnosis.
Luckily for us my cousin had the exact same reaction to sulfa drugs and has shared that info with Alison. She is juicing, eating light, taking charcoal and Benadryl, and getting off the sulfa. Let's hope this awful stuff clears up soon and that her face is not scarred.

Alison's new rash

2009-02-24T22:00:00.000-08:00

Well, here's a new one for Alison. She started getting a rash on her hands which she showed to her rheumatologist when she was there for her checkup. No comment or help. It continued to worsen and is now spreading to her face and then today to her legs. She went to a dermatologist on Monday who said it was either a heat rash or some weird kind of excema. She got some cream for it which made it burn like crazy. I told her to put her hands in cool water with a lot of baking soda in it. The baking soda relieved the burn. She got some calamine lotion to help with the itching.

It looks like poison oak but I would think the dermatologist would recognize that.

Anybody got any idea what this is???

Life in the Lyme lane

2009-02-24T21:41:00.000-08:00

Living with Lyme and auto immune problems is a huge lesson in patience. On a good day I can almost feel normal and accomplish some of the tasks many take for granted such as driving somewhere, using your computer, talking coherently, etc.

On a bad day, just fixing breakfast, taking a shower, and getting dressed is exhausting. Some days I just get some food in me, let my little poodle out in the fenced back yard to go potty, then go back to bed. My mind isn't processing so I can't read, use my computer, or do simple tasks. I'll put on the TV or some music and just lay there waiting for the symptoms to change.

One of the most frustrating parts of this is that, since people only see me when I am able to get out and about, they can sometimes (and believe me they do) say the stupidest or meanest things. I have had people say that there is no way that I am disabled because they have seen me walk my dog. Or the classic line is, "But you don't look sick." that to a person who has probably had doctors dismiss their illness sounds like another round of "this is all in your head."

Another challenge is the tendency on the good days (or hours) to somehow think you are cured and have gotten better. Then when Lyme rears its head again it can be downright depressing.

Today I was in bed for most of the day which is probably why I feel rested enough to write this blog tonight. My symptoms today included crushing fatigue, dizziness, brain fog, anxiety, muscle pain, headache, nausea, a muscle spasm in my right calf, and deep achey pain in my left shoulder going down into the biceps area.

But I have hope that my new doctor has found another piece of the puzzle. My test at Igenex for co-infections came back as "borderline/suspicious" for three co-infections. My doctor says I am most likely positive for all three but my immune system is so shot that it can't even mount enough antibodies against the Babesia and others for it to show up more clearly on the test. So I start my long term antibiotic therapy as soon as I get the prescriptions filled. She also has me on a number of supplements and herbs. I pray this will help me to heal and get my life back.

Jan's experience of Lyme disease

2009-02-18T14:32:00.000-08:00

This is a long story that I will do my best to shorten. It is only recently that the medical profession is understanding how widespread Lyme disease and other tick-borne illnesses are. Even with that knowledge coming to the forefront there are still many people suffering who are not getting diagnosed or treated correctly.

I was bitten by a tick when I was a teenager on vacation with my family in Wisconsin. My father put a lit cigarette close to the tick to make it back out. I still remember that I was freaking out that he would set my hair on fire because the tick was attached behind my right ear.

I didn't think any more about that tick bite until decades later, even though I can see with 20-20 hindsight that my symptoms started after that. At the age of 16 I started getting diagnosed with illnesses. First it was painful menses, then hypoglycemia, then joint pain which was attributed to my scoliosis. In my 20's one orthopedic surgeon wanted me to have an MMPI (Minnesota Multi Phasic Inventory) as he was sure I was a hypochondriac and my joint and muscle pain was all in my head. I finally just came to the conclusion that I had a "bum body" and that I was born with some physical weakness.

Years later I came across the web site www.canlyme.com and - wow - there under symptoms was a litany of my issues. I went to my doctor at the time and asked him to test me for Lyme disease. His response was, "The CDC says there is no Lyme in the State of Washington so we don't have to test you for that." By that time I had such bad brain fog that it didn't even occur to me to tell him that I was born in the midwest, had lived in California, and had traveled extensively. But believe me, I have read numerous posts on forums where people have had this exact same incredibly stupid response from their doctor.

After being diagnosed with Fibromyalgia and Chronic Fatigue plus a host of other ailments such as Hashimoto's, I went to a clinic in Bellevue that specializes in those illnesses They were the first doctors to listen to me so I finally got my Lyme test. Bingo, it was positive. But I also tested positive for five separate parasites and opportunistic infections, so my doctor decided to concentrate on those first.

Next - the ups and downs of living with Lyme

Looking Back. . .Mystery ailments - are they related

2009-02-18T13:46:00.000-08:00

This from Alison-
After all the tests, the biopsy's, the surgery and the final diagnosis, I am still perplexed by some physical ailments that plague me to this day. I originally thought they were a separate health problem, but now I believe it was a pre-cursor to what I would eventually experience in October of 2008.
In July of 2008 I severely strained my left calf muscle after a hard day of riding. Normally, an incident like this for me would remedy itself in days, just like any hard workout. When the pain persisted for a few weeks and started to affect my knee,I finally sought treatment from my Orthopedic doctor. An MRI was done and the results were negative for any abnormality, yet my pain was extreme. I opted for weeks of Physical Therapy, Laser Therapy and ample rest for six solid weeks (no riding, biking, walking, etc.), much to my chagrin. However, to this day, the pain in my calf and knee are significant and affects my daily routine.
After a consult with my Rheumatologist and reading numerous on-line articles, it is a definite possiblity that the Sarcoidosis is the culprit that won't allow my body to heal. Joint stiffness and swelling, joint pain, muscle aches, pains & weakness and even arthritis are common with Sarcoidosis.

Sarcoidosis-description & is it related to Lyme disease?

2009-02-13T11:14:00.000-08:00

Sarcoidosis is a disease characterized by non-caseating granulomas that can form in the lymph nodes, lungs, heart, eyes, skin, and brain. According to allopathic medicine, it has no known cause or cure.

When a body creates a granuloma to fight a microbe (infectious agent) it will generally break down and die (necrosis, caseation) after they have done their job of killing and digesting the bacteria. In Sarcoidosis these granuloma do not die, they remain healthy (non-necrotic, non-caseating).

Alison's experience with sarcoid is extreme fatigue, pain in her chest, pain in her limbs and muscle cramping, shortness of breath, brain fog, and difficulty keeping up with every day tasks. The physical nature of her work with horses makes it even more challenging.

What I noticed is that, with the exception of the granulomas, Alison's symptoms are very similar to what I experience from chronic Lyme disease. This may be a coincidence, but after months of researching online sites from the Mayo Clinic to support group forums I am noticing what appears to be a pattern. Is it possible that tick-borne illnesses are actually the underlying cause of sarcoidosis and/or many other chronic modern-day infections?

Sounds familiar to me

2009-02-13T11:10:00.000-08:00

About fifteen years ago Alison had an episode of hot, painful joints that were swollen and red. The doctors thought she might have Lupus and they treated her with Prednisone. The symptoms went away but there were other unusual health challenges that cropped up over the years. She had surgery to reconstruct her ankle after a horse-related accident and the post-surgery pain never went away. One doctor diagnosed her with Reflex Sympathetic Dystrophy and another said she had scar tissue from the surgery that needed more surgery to be removed. The first doctor said more surgery would just make the RSD worse. She still lives with pain every day and has lost a percentage of the use of that ankle.

This story is so typical of what I hear from other Lyme sufferers. In fact, every one of Alison's symptoms, except the granulomas, could also be attributed to Lyme, or Babesia, or many of the other tick-borne illnesses. Could it be that the granulomas are one way Alison's body is trying to deal with the Lyme? Perhaps she has a genetic predisposition to form granulomas or perhaps for some Lyme patients the granulomas are part of the immune system's misguided attempt to locate and deal with the foreign pathogen. We now know that Lyme is caused by the Bb spirochette and that it can morph into other forms, both a cell-wall deficient and a cyst form, in order to avoid detection. I wonder if the granulomas themselves have ever been given any type of screening test for Lyme.

So we come to the one of the reasons for my starting this blog. We are hoping to raise between $4,000 and $5,000 so that Alison can go to a LLMD - a Lyme literate medical doctor. These doctors are more current and forward-thinking in regard to tick-borne infections. Many of them are also members of ILADS (International Lyme and Associated Diseases Society). These doctors understand that the CDC's current recommendation of 2-3 weeks of antibiotics does nothing for most Lyme patients.

We will post Alison's and my treatment and progress in the hopes that it will help others in their diagnosis and/or treatment. I can tell you that I have probably had Lyme for over 40 years and I did not get my diagnosis until April of 2007. I am still working on getting the correct treatment but am hopeful that I have finally connected with some good doctors where I live. I pray I do not have to watch my daughter endure the same slow decline in health and abilities.

All of Alison's family and friends who love her know that getting well and being able to continue horse training is our highest hope for her. We are doing what we can to help her and are grateful for anything you are so moved to contribute.

Alison's story begins

2009-02-06T21:19:00.000-08:00

Alison started riding horses at the age of four when her Aunt Lory started training her on Toy Tiger. She was tall for her age but her legs still stuck almost straight out on the big, gentle horse. Alison LOVED riding, a love affair which continues to this day. She followed in her Aunt's footsteps, and after getting her Bachelor of Science degree in Animal Science from the University of Nevada at Reno, she was riding and training others in the sport she loved.

As her Mom I noticed that Alison seemed to get sick a lot. It seemed to follow the pattern I had experienced in my life of going along doing fairly well, then catching something that seemed to linger longer than other people had it, or having something simple like a cold turn into bronchitis or pneumonia, etc. You chalk it up to stress or something you're eating or not eating or whatever, and you just do your life as best you can.

Then last year Alison called me in tears to say that she was having these symptoms - fatigue, shortness of breath, pain in her chest and a feeling that she was being choked. A CT scan showed all of the lymph nodes in her chest to be enlarged. The doctors suspected she might have Lymphoma. We were devastated as my husband had just died one year earlier of cancer. He, too, had a few symptoms, went for a biopsy, and eleven days later he was gone. It couldn't happen again to our family. It just couldn't.

We were greatly relieved that, after three biopsies, no lymphoma or any tpe of cancerous tissue was found. That was the good news. The bad news - she probably had Sarcoidosis.

Next time: What is sarcoidosis and how is it affecting Alison's life. . .

How to begin? Now that's a good question.

2009-02-04T11:33:00.000-08:00

WHAT'S A MOTHER TO DO?

After dealing with chronic illness since I was a teenager, I was devastated when my daughter Alison was diagnosed with auto-immune disorder and sarcoidosis.

What is sarcoidosis you may ask? Well, it's another one of those chronic conditions that has no known cause and no known cure. But is that really true? There are some doctors, researchers, and sufferers who believe that sarcoid and a host of other chronic conditions are sometimes caused by infectious agents passed by tick bites or mosquito bites. We know for a fact the West Nile virus is passed by mosquito bite and that Lyme disease and a host of co-infections such as Babesia and Bartonella are passed by tick bites.

Sarcoid granulomas can occur in lungs, lymph nodes, heart, brain and eyes. Alison has it in her lymph nodes. It can be fatal - Bernie Mac just died from sarcoid-related problems.

After 40+ years of my chronic health challenges, navigating the often confusing and sometimes downright insulting diagnosis I received, I was finally diagnosed in 2007 with and tested positive for Lyme disease and a long list of other problems. Over the years I actually had doctors want to give me an MMPI (the Minnesota Multiphasic Personality Inventory) because they thought I was a hypochondriac even though I was in constant pain, fainting a lot, had low blood sugar, my hormones were a mess, thyroid was low, and my adrenal glands barely work. Do I want my daughter, or anyone else, to go through this same hell - absolutely NOT!

Here's what I hope to accomplish with this blog-
* Raise awareness about Lyme disease and Sarcoidosis
* Raise money so Alison can go to a qualified, Lyme-literate specialist
* Share her story and mine to help others with chronic illness
* Pursue the theory that Lyme or a related pathogen is the underlying cause of a host of today's mysterious and/or chronic conditions
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How you can help-
Pass this blog address to as many people as possible
Share your medical stories
Share any related links, research or clinical trial info you have
Give feedback to posts
Donate if you feel so inclined (every dollar will go to pay costs of doctors and tests for Alison)

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Coming next . . . Alison's story