I posted on this board 3 years ago when I feared I might have Lyme. I was terrified of the disease and also terrified of the costs of an LLMD.
I furiously didn't want this disease and couldn't rationalize spending all of that money for an LLMD visit to have a conversation about a disease I wanted no part of. I literally would have had to borrow money from my folks, and I would have had to try to explain all of this to them. All of their lives, they have gone ``in network'' for their care and they would have thought I was getting scammed to pay these costs.
When I called Dr. E in NJ, I heard the price and I didn't make the appointment. I could hear my parents' voices in my head telling me it's ridiculous to pay that kind of money when other doctors are covered, and at that time, I agreed. That was 2008.
That was before I earned what feels like a ``mini degree'' in understanding this horrendous, horrendous disease and the appalling lack of knowledge found in most doctors. If I knew then what I know now, I would have made the appointment in 2008. I waited until 2011.
Earlier this year, I found out I have a corn allergy (IGG) and gluten sensitivity (need further tests to confirm celiac; not interested in more tests!). I know food allergies are linked with lyme, and lyme was always in the back of the mind because I never got any other solid answers.
Seeing doctors always left me with more questions than answers, so in frustration and exhaustion, I stopped seeing doctors and did my best to get on with the business life.
A few years ago, I saw so many doctors...
I had seen rheumatologists who diagnosed me with early onset arthritis and said my other issues were vascular;
vascular specialists who said I had raynauds and my other symptoms were from some sort of rare collagen-muscle fiber disorder (some sort of myositis) and that my issues were rhuematological,
another doctor who said I should be retested for lupus and related disorders every 6 months,
another doctor I saw for hand pain said I had symptoms of MS but a negative NCV so more doctors and more tests were needed,
another doctor who said I had PCOS,
another doctor who said no PCOS but Pituitary-Adrenal Axis Deficiency causing Hypothyroidism... MRI of pituitary was interpreted differently by 3 different docs.
All of my hormone levels were abnormally low. My estrogen level was 7 (at age 30), which is consistent with someone post-menopause with dementia. That's pretty much how I felt at the time - like I had dementia.
My cortisol was low, progest was low, everything was low. I had crushing fatigue and body pain. The repeat MRI of pituitary was normal but all of my hormone levels were all still abnormal. I had many questions, no answers.
This year, I decided that it was time to bite the bullet and see an LLMD. I saw Dr E this summer. Part of me was optimistic she would tell me this was all related to food allergies. She said I have leaky gut and was malnourished from celiac and malabsorption of vitamins and nutrients. I also have osteopenia and Dr. E said that at my age, it's from the leaky gut.
Tests from Dr. E were sent to Igenex and came back positive for Lyme and Bartonella. My CD57 is 30. I was in disbelief. I had read about co-infections but really didn't give them much thought. I was really beginning to convince myself all of this was just celiac running off the rails. I was wrong.
I probably contracted lyme as teenager.
I first had ``concentration'' problems in 7th grade. I was always in the gifted and talented classes and I remember one day I was at my friend's house and I couldn't understand why she could do her homework and I just couldn't get myself to think. It frightened me and I always remembered it. It began happening more and more.
In 9th grade I started drinking coffee to help with concentration. Smoking also helped (quit about 10 years ago)
Also, in 9th grade, my left knee swelled up so badly that I couldn't go up and down stairs. I was diagnosed with chondromalacia and sent to physical therapy and told to buy new shoes. A recent MRI of that knee showed no chondromalacia ever existed, but theres still tons of fluid on this knee.
I had eye twitching, muschle twitching, and shortness of breath in high school. I was told by the doctor that the machine used to diagnose asthma was broken, but that I had bad allergies and I probably had asthma. I was given an inhaler. The inhaler didn't help so I stopped using it. I dealt with mini-panic attacks and an array of other symptoms that I now know were lyme.
I was diagnosed with ADHD at age 19, and the doctor at my college said I was a ``creative/gifed and talented'' type, and that's why it took me so long to be diagnosed. My doctors now agree that it was lyme the whole time - ADHD doesn't spring up in the teenage years.
This thing is spreading about my system... I can't wait to get it OUT.
Heart I've never had a murmur, until now. I met with a cardiologist who specializes in lyme. He was on Oprah so I feel like I'm in good hands. He has me scheduled for $3000 worth of tests. Thankfully, these are covered by insurance.
Brain The MRI of my pituitary showed another finding - Cerebellar Tonsillar Ectopia. Upon googling, this is found in lyme encephalopy. Kinda wish I googled it sooner; kinda wish I never googled it.
Hands This first became a problem 6 years ago and I had an NCV test done then. It was normal and I was thrilled because I was told that meant no MS. Trouble grasping, writing, performing simple tasks. Cannot write more then 4 sentences without stopping due to excruciating pain. Thank heavens for computers. I was referred to a hand specialist but never went. Gonna try to go this year. Mom has dyputrens and it looks like I now have the knots and cords in both of my palms.
Eyes Next up is the eye doc. In the last 2 months vision has been fading fast. My distance glasses aren't enough even with my face practically pressed up again the computer screen. WTF.
GI Following Burranscano's viamin protocol along with probiotics and enzymes from Dr. E.
The cats claw roller coaster has been unpleasant because it brings a lot of symptoms to the forefront. I switched from capsules to tincture due to the herxing. Still herxing.
I had to stop taking it this week to treat a sinus infection and I need to talk to Dr. E about the antibiotics. My PCP gave me doxy for sinuses (I muscle tested okay for the tetracyclines with Dr E) but the one I got had gluten or corn in it and I had a reaction.
Next, I'm going to take compounded Zithromax for sinuses. Wish me luck.
I want to send a big thank you to this community. Time and time again I have come back to this site for guidance and support (as a reader, not a poster).
I wanted to thank you for all that you share and let you know that in addition to all of the people who post, there are tons of non-posters who benefit greatly from the words of wisdom and encouragement on this board.
I'm going to make an effort to post more, because I really believe that we all learn so much from everyone's stories.
If anyone is on the fence about how important it is to see an LLMD, please make your appointment now. I didn't want lyme, but lyme doesnt listen to that.
I found so many excuses NOT to see an LLMD, but when it is lyme, you're better off knowing sooner than later. And if it isn;t lyme, you're better off having an expert rule it out.
Sincerely, Kate
**edited city of LLMD**
[ 10-16-2011, 02:10 PM: Message edited by: Lymetoo ]
Posts: 5 | From New Jersey | Registered: May 2008
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posted
Very sorry it took this long, but I'm glad you are now receiving treatment. That is the important thing. It's not any worse than those of us who were diganosed 40 yrs after the fact.
Meaning .. YOU CAN GET WELL! Your story has many similarities to mine. My chiro recently said to me that he thinks the celiac/gluten issue came first.. and it is what allows some Lyme patients to go downhill, while others can get over the bite and move on. Could be!
I'm glad you will be posting now! We're glad to have you aboard!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Regarding your sinus problems, look into Serrapeptase.
This is a systemic enzyme that reduces fibrin, and should clear up the sinus infection. Fibrin causes biofilm, which protects bacteria from the white blood cells.
The white cells can't tell that the bacteria is there, so they cannot phage them.
Google for info about serrapeptase research, sinus. Here are brands available at iHerb.com...you can read reviews to see what people think of it. http://www.iherb.com/Serrapeptase
. Regarding your eyes, look into taking antioxidants. Vision can get worse when the liver can't keep up with detoxifying the poisons left behind by dead Lyme bacteria.
Mangosteen juice is a good antioxidant that many people here have tried. You need to buy the kind with the pericarp, or rind, as the rind has the antioxidants. This one is pretty good: Trace Minerals Research Ultra Mangosteen (good price at vitacost.com) Xango is very good, but very expensive.
These supplements may help to improve your symptoms and make life a bit easier while you're figuring things out.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
First, I want to say I am sorry you are having such a rough time of it. I do hope very much that you will soon get some much deserved relief.
Second, your story is heartbreaking in so many ways, but I am glad you shared it. And very glad you got to a LLMD.
I would like others to read this who also doubt that spending money on a LLMD is hard to justify. We have a number of them who would rather bash the LLMD and their practices, not understanding what it is all about and how much they actually do to help people.
If you don't mind giving permission, I would like to edit your story down a touch and share with those it may help. I'd even like it to be a "sticky" that stays on the top of the board for folks in "Seeking a Doctor" section if the moderators would agree to do that.
You have a wonderful way with words and your story is much needed to help prevent the suffering of others.
Would you allow me/us to share it?
And remember, if you need anything, someone is almost always here doing what they can to help others, so join in any time.
Feel better soon! And thanks again for this contribution to understanding.
posted
Thank you for your kind feedback and support.
I really appreciate the suggestions regarding sinus problems and vision. I'm going to check them out for sure.
Tincup, it's so nice to hear that you think my post could help others. Please feel free to edit it and share it as you described.
If even one person reads it and it helps them decide to make an LLMD appoitment, that would be wonderful Thanks again.
Posts: 5 | From New Jersey | Registered: May 2008
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posted
Thx for letting us read your story - good thing you've finally gotten going on treatment!
I want to second what Carol said about drinking mangosteen juice for eye symptoms. It's an anti-inflammatory antioxidant juice with the capacity to scarf up free radicals from all the inflammation. I have no Lyme eye symptoms as long as I drink the juice. I now drink 1/2 ounce in the am and pm.
Another thing it did for me was cause my sinuses to run for two days when I first started drinking it - and I didn't even know I had any sinus problems!
If you try some, go slowly and drink a lot of water also, as it can be powerful.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Just some feedback on the Celebellar Tonsillar Ectopia.
That is a fancy name for Chiari Malformation which has nothing to do with lyme (though lyme can make the symptoms of c.m. worse). It is a herniation of the celebellar tonsil decending through the forum magnum and into the spinal cord.
Having Chiari can CAUSE encephalitis due to the blockage of spinal fluid from the herniation of the tonsils. We know lyme can cause encephalitis but it does not cause the structural malformation of chiari.
Most people are born with it.
I have both chronic lyme and chiari malformation and none of my LLMD's felt lyme causeed it - as a matter of fact most did not even know what it was. It is a structual issue that I was born with.
I had the skull/brain surgery last year to fix the Chiari. Just be careful not to assume everything is lyme because some things are not.
The only way to check if the c.m is truely causing problems is a CINE Flow study to check the CSF flow in and out of the brain.
Posts: 151 | From North East | Registered: May 2011
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