posted
Hi, I am a newly diagnosed Lyme patient. This is going to be a long post, I know there is a specific way that Lymenet prefers that I type out my post but I am not real clear on how that is.
I have been sick for what I figure from my symptoms since late July 2011/early August 2011. I never saw a tick and I never had a bullseye. I just started having major gut issues and then the brain fog began to take over my life.
Just from going back and trying to figure out what I was doing just before I started showing symptoms, I had gone camping in late May 2011. At this point I never thought anything about Lyme disease. It took months of being very ill with my gut symptoms, brain fog and depression.
I am diagnosed Bipolar Disorder I and deal with depression a lot but I am also on meds so I thought I had that somewhat under control but when the symptoms all started showing up, I didn't know what to think of it.
First I went to a GI doctor who ordered a Endoscopy and Colonoscopy, they found nothing and basically closed the door as it was all in my head.
I then was referred to an Internist who did some more blood test and determined my Vitamin D was low and he did an ELISA that came back negative. He said I do not have Lyme disease. I requested a Western Blot test be ordered.
I went to another doctor who ordered some more blood results and they came back with my TSH as 5.900, Hypothyroidism. She started me on Armour for my thyroid. I had asked this doctor to do the Western Blot. It came back as negative but the IgG band 41 came back as Present. So they said the test was negative.
My ASO Titer was also high which concerned the doctor as well as my Thyroid Peroxidase was High. She wanted to recheck my ASO Titer and that test came back as high again. With my gut issues, she wanted to re-check me for celiac disease but the test came back normal.
I went back to the Internist and he did another blood check and my Vitamin D came back better as well as my thyroid since I had been on the Armour. My Vitamin B-12 came back better as well. My Thyroid Peroxidase Antibodies came back as high again. Again, My ASO Titer came back as high.
Another visit to my Internist came back with my Calcium as High. I don't remember him ever saying anything about that. Finally in October after all of the symptoms were not pointing to anything in general I sent my blood work to IGeneX, Inc.
While waiting for those results, I was told by my GYN that I needed a hysterectomy so I had that done in late October and I am in recovery right now.
Going back a little, per request of my psychiatrist I had a MRI without contrast of my brain. With the brain fog I am suffering, I don't understand the findings but I do have the diagnostic imaging report. I then had a QEEG of my brain which showed that my brain was basically extremely slow or asleep. I have the chart of the QEEG that shows what part of my brain is slow but I can't understand how to read the chart too well, there is the Delta, Theta, Alpha, Beta and High Beta. They did it with my eyes shut and open. I just wish I could understand what all of that meant and if it related to the Lyme in any way. The doctor who preformed the QEEG suggested that he could help me with neurofeedback. I'm not sure where to go with that.
Wednesday last week, November 14, 2011 I went to the doctor or ordered my IGeneX, Inc. labs to see the results. I went alone really expecting to be told they were negative. I had gotten to the point where I thought this was all in my head.
None of the doctors I was seeing would believe that I could possibly have Lyme, which confused me how they could rule it out so fast with all of my symptoms. I will list my symptoms in a moment.
I sat down and she basically told me that my test showed I am positive with Lyme. My IgM results were 31 and 41 positive with 39 IND. I go to see my LLMD next week. They started me on two antibiotics, Tindamax, 500 mg 2X a day and Ceftin, 500mg 2X a day.
I pretty quickly started the HERX reaction. My brain fog increased, I have severe head, neck, shoulder and lower back pain. I feel like I ran a marathon my muscles all over are so sore and I feel like I did squats and weight training after having not done it in a while.
I am not sleeping well and having strange nightmares and I am extremely depressed. And although I have been dealing with this, my senses are hyperactive; taste, smell and hearing. It is all so overwhelming. I started taking the antibiotics November 14th in the afternoon and I am still feeling this way.
Here are some of my symptoms, sorry for the overload; brain fog, joint pain, lowerback and hip pain, shoulder/upper back pain and spasms, neck pain, stiffness and spasms, severe headaches, eye blurriness, dryness, feel weird.
Petechiae, thrush, chronic yeast infections, depression, severe anxiety, internal and external tremors, tongue tied, exhaustion, abdominal pain, altered sense of smell, taste and hearing
Too many sounds at once overwhelm me, my body feels hypersensitive to sounds, touch, smells, taste, even my hair/scalp.
Extreme weight loss (66lbs in less than a year), lack of focus/concentration, mitral valve regurgitation, swollen and sore lymph glands, extreme dry skin, jaw cramping, heart palpitations, small head sores.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Welcome to LymeNet! And, congratulations on getting your lyme diagnosis so quickly. I also did not see a tick bite and did not get a bulls eye rash, so it took 10 years of sickness before a doctor tested me for lyme and I got my diagnosis.
We will be happy to help you here any way we can. I have 2 suggestions for you:
1. Read and STUDY the Burrascano lyme treatment guidelines found here:
They will give you your education on this disease. Then, you will be able to evaluate your doctor's treatment of you. Very important!
2. Find the very best lyme doctor you can. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
I have been around lyme now for 10 years, and that is my conclusion. It was my 3rd lyme doctor who cured me. That was over 7 1/2 years ago. The first 2 docs didn't know enough to get me to wellness.
It takes a lot of knowledge of this disease to be able to cure someone. Find a doc who has cured it for at least 3 people. That's my advice.
You can also contact the lyme support groups in your state and nearby states. See Support Groups on left side of page.
Wish you the very best!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you TF, I have actually read and the Burrascano lyme treatment guidelines but right now my problem is I am so overwhelmed that I am having such a hard time understanding a lot of the information when it gets into the co-infections. I see my LLMD, who has come highly recommended by someone that also sees her for her treatment of Lyme. I think once I have my appointment with my LLMD, maybe things won't be so confusing to me. Thank you so much for the offered support. It seems like I will need it. I watched the DVD "Under Our Skin" and I thought there was not hope. Since I have been researching here on Lymenet, I am feeling a little better that there are enough people out there that understand and can also relate.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- My QEEGs (all 3, done with 3 different doctors) showed the same results as yours. Yes, the brain "dysfunction" is likely from lyme.
No, Neurofeedback will NOT help - UNTIL lyme, other coinfections and other issues that go with it have been at least somewhat successfully addressed. In my experience.
Neurofeedback - a few sessions now - may be helpful in helping you learn how to help your mind and body relax but it can't change the REASON and the EFFECTS of infection.
Beyond just a few sessions for biofeedback kind of learning, it's best to wait on that form of therapy. And, you may not need it then. But, if you do, it could help fine tune some skills after you no longer are dealing with active or active-chronic infection.
Inflammation is also going to affect the brain. And inflammation is huge with lyme. Antioxidants can help along the way. Magnesium, Fish Oil, etc.
But, mostly, it's just going to take a while so don't expect your brain function to be very different for a while. Patience and self-tenderness and acceptance are hard but vital.
As for the Herxheimer reaction that you are experiencing, I hope your LLMD is guiding you with good support. Links to follow. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Thanks Keebler, my husband and I had come to the conclusion that we were going to wait until we spoke to my LLMD and get her thoughts on the neurofeedback but I have to say, I agree with you. Right now I have bigger issues to deal with. Plus, the doctor who wants to do the neurofeedback and did the QEEG does not seem to support a Lyme diagnosis. He said that the Lyme is making no difference with my brain. I immediately put my guard up, I felt like he is one of the doctors who does not support Lyme treatment. He didn't want to discuss it with me once I told him of my diagnosis. I need doctors who support Lyme and will support me.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't read your post at all- sorry. But hope the detail help.
Many here can't read solid text. So, when you want more to be able to read it and reply, short paragraphs, about 3-4 lines are best.
"Breathing room for the eyes" is need for many due to the visual and brain stuff. Apparently, you are not bothered by solid text, so that's good. It's just good when posting to know that many are.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In case you had another question about neurofeedback, I wasted YEARS doing it weekly. The PhD told me all along he did not think it could help unless I got lyme treatment -
(and that was not available to me other than what I could piece together myself).
So, I did it anyway and, he was correct. It was really of very little use - beyond the first 2 or 3. If you do a few, focus on how to control your breath, any anxiety that you may have, etc.
Still, even a few may likely be a waste of time.
I also did many sessions with another doctor. One was a PhD who worked with austic kids (and my case was far worse than any he'd seen as my brain could show no improvement) . . .
and with a speech therapist who also worked with autistic kids. Insurance cut that off after a few but it also did not help.
Spend your efforts on treatment that matters most. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm reposting these and trying to type them so all can read. Sorry, I'm new to this site and forget to correct way to post.
Thank you TF, I have actually read and the Burrascano lyme treatment guidelines but right now my problem is I am so overwhelmed that I am having such a hard time understanding a lot of the information when it gets into the co-infections.
I see my LLMD, who has come highly recommended by someone that also sees her for her treatment of Lyme.
I think once I have my appointment with my LLMD, maybe things won't be so confusing to me.
Thank you so much for the offered support. It seems like I will need it.
I watched the DVD "Under Our Skin" and I thought there was not hope. Since I have been researching here on Lymenet, I am feeling a little better that there are enough people out there that understand and can also relate.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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posted
Keebler, sorry for the incorrect reply format. I hope this helps.
Thanks Keebler, my husband and I had come to the conclusion that we were going to wait until we spoke to my LLMD and get her thoughts on the neurofeedback but I have to say, I agree with you.
Right now I have bigger issues to deal with. Plus, the doctor who wants to do the neurofeedback and did the QEEG does not seem to support a Lyme diagnosis.
He said that the Lyme is making no difference with my brain. I immediately put my guard up, I felt like he is one of the doctors who does not support Lyme treatment.
He didn't want to discuss it with me once I told him of my diagnosis. I need doctors who support Lyme and will support me.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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posted
Hi Hanna, Just wanted to let you know that out of all your symptoms listed there were only 1-2 that I don't have also. I'm glad you are diagnosed and wish you the best!
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
Your story is the classic lyme story, except you were very fortunate to get a diagnosis in only 1 1/2 years instead of 10 or 20 years!!!
I think that your instincts are correct in that you shouldn't do anything else until you see your new LLMD! In addition, I would stop seeing any other doctor who "doesn't believe" in lyme disease or who thinks your symptoms are "all in your head".
When a doctor tells you that your symptoms are "all in your head", they are really telling you that they aren't smart enough to figure out what's wrong with you. Instead of just admitting that fact, they are so arrogant that they blame the patient for their shortcomings by saying it's "all in your head". Don't waste your time or money on these losers!
Just remember that there isn't a "cure" (or at least a simple cure) for lyme. Getting better takes time and it requires seeing a competent LLMD. It also often gets worse (with the herxing and increased symptoms) before it gets better.
Posts: 177 | From Ohio | Registered: Aug 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Hi Hannah, Welcome but sorry that you are having to experience all of this! Your story is all too familiar to many of us here.
It sounds like you are herxing from the antibiotics you are taking. They are killing off the lyme bacteria and possibly more.
Your immune system creates 'cytokines' when it is trying to make you better. It is an over-abundance of cytokines that make you become inflamed and feel so sick. They are good to have but too many make you feel horrible.
There is a really good website that explains all of this much better than I can...
There are many people who get better. It just takes a lot of time and patience. That is why support is so important.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Lymetoo, thank you for moving this post to the appropriate location.
What did you mean exactly when you suggested I had a lot going on? I'm assuming that would be symptoms?
I am overwhelmed by the list of symptoms I have and I try so hard to not question whether not it is true that I do indeed have Lyme but I was told the IGeneX, Inc. lab does not lie.
I am just in fear that I will go to my LLMD and be told there has been a mistake, it is indeed in your head.
I am trying to not get my hopes up that the LLMD will be able to help me because as you said, I do have a lot of issues.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
hanna, we all fear going to new doctors because of how we have been humiliated by doctors prior to getting our lyme diagnosis--and even after getting it!
But, if the doc you are going to see is truly a lyme doctor, have no fear. You will think you went to heaven. You see, a lyme doctor knows the symptoms of lyme and will know that you have lyme. It is a no-brainer to them. They have seen hundreds or thousands of cases just like yours.
You will be listened to, believed, treated for lyme disease, and you will realize that you are finally with a doctor who really, really, really understands.
It is true that if you get positive lyme tests from Igenex, that is proof positive that you have lyme. And, all lyme doctors know that and accept that. So, there will be no question that you have lyme.
We have all been told it was "in our heads" by doctors who knew nothing about lyme disease. I got that treatment for 10 years! I really needed a lot of courage to go to another doctor, hoping he would be able to figure out what was wrong with me. And, invariably, I would be humiliated again.
So, you see, we have all gone through what you have gone through. Stay away from the non-lyme doctors and you will not experience their treatment any more. You will be treated with respect and understanding.
Get your hopes up because a lyme doctor is the ONE doctor who will be able to help you. It takes time, but your symptoms will eventually go away.
Just keep reading on here and you will see. Hope your appointment is soon. I hope that this doc comes highly recommended by the lyme support groups. There are VERY few good lyme doctors in Florida.
I'm sure Lymetoo was just referring to how many medical problems you have going on.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I hate that I have to welcome you to the lyme world but this forum helped me a lot.
I am Hanna's BFF and pushed her for lyme testing as our symptoms were similiar and so was our stories. I truly did not expect her to test positive, but atleast the search for answers is over and she can begin the journey to better health.
3 out of 4 in my family have been diagnosed and now my BFF We are all in Florida so it goes to show you its not that uncommon in the south now.
All the lyme patients I have spoken with have been right all along regarding what I will experience along the way. Listen to them and me and you will get better. It's not an easy road and its long, but it does improve...promise!
I love you and I'm always here for you. I hate you are dealing with this but atleast we have our answer finally. Posts: 747 | From Utah | Registered: Apr 2010
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posted
Thanks Kimmie:) Without you, I would not be in treatment right now.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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posted
It is very frustrating when I have a doctor, PhD, who did a QEEG on me and said my brain is extremely slow and "asleep".
He is trying to convince me to do neurofeedback and I told him I wanted to wait on that while I am going through Lyme treatment.
His response to that was "two things that work against that theory" I told him I have been depressed as long as I can remember and that I have anxiety/panic attacks. He said, "those are all unrelated to Lyme".
Yes, I suffer with Bipolar Disorder I, depression and anxiety/panic attacks. The depression and anxiety have gotten much worse since I started getting sicker.
My meds for Bipolar are not under control right now either and I wonder if that is because of Lyme.
Is this just another doctor saying, "Lyme is not the issue?"
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi hanna2010:
Our daugher pulsed Tindamax 2 days out of every seven for 4 months then 3 days out of every seven for 2.5 months. She was also on Mepron and Zithromax the whole time.
I think we started the first 3 weeks of Tindamax with half dose. This drug was hard on her, similar to chemo. Clumps of hair, nausea then when we increased to 3 days an alergic reaction kicked in (hives, itching, etc.). We alleviated this with other medications (non lyme over the counter stuff).
We finally took her off (in between LLMD appointments) as one of the side effects can be anorexia and she was starving herself.
Now one could ask why were we torturing our daugher? We actually felt this was the medication that brought her back to us.
The neurological symptoms had been progressing throughout our journey on learning about the controversy and finding a LLMD (8+ months) and continued to worsen on just Mepron and Zithromax (treating for babesia).
So it was 12+ months in before Tindamax was added. Then another 4 months before we started to see neurological improvement (but we felt this was from the Tindamax and not Mepron/Zith).
Her appetite came back within 6-8 weeks after dropping tindamax.
Good luck.
PS - Western Blot Band 41 is the antigen for the flagella on a spirochete bacteria (could also be from syphilis, Weils or other spirochete bacteria. WB Band 31 is specific to the lyme borreliosis bacteria (39 is also lyme specific). This clearly indicates exposure to the lyme bacteria.
Note the IDAS and CDC does not consider this a positive test. Part of the controversy so "main stream" medical MD's will not consider this lyme.
PPS - our daugher also had severe sleep anxiety. She would be fine but come around 8PM she would start bouncing around and by 8:30PM (normal time for bed) she would be jumping all over. Used to take 2 - 3 hours to put her down for the night.
We were not sure if that was from Babesia or Lyme.
PPPS - a controversy on the D3 levels but I have our daugher supplementing with 4,000 units a day and her level is still in the low 40's and needs to move into the 60 to 80 range.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hanna,
1. you need to divorce yourself of all notions from that PhD who is not LL.
Now, the QEEG TESTS are VERY valuable detail. Be sure to get your own copies of those.
However, regarding his idea of neurofeedback now and that "lyme can't be connected" - he is wrong and he is wrong for you.
Depression, anxiety, panic attacks and misdiagnosed bipolar are VERY, VERY, VERY common with lyme.
"slow brain waves" are, too. My QEEGs were remarkable with dysfunction that is key to lyme.
Myra Preston, PhD in N.C. is a superb neuro-researcher in the field of Chronic Fatigue Syndrome and is no stranger to lyme. She reviewed one of my three QEEGS (the one that was done to her specifications by someone trained by her).
She specifically remarked that, due to my untreated lyme diagnosis, that my brain irregularities on the QEEG were most certainly in lyme with what would be expected with neuroborreliosis.
It was strongly suggested that the infection needed to be addressed first and that any neurofeedback would be support but in no way a substitute for treating lyme.
The PhD you have seen does not know what he's talking about here.
You need to find a LLMD or LL ND and educate yourself about the symptoms and breadth of lyme & all that can go with it.
I know this is hard but if you hang on to the words from that idiot doctor, you don't stand a chance.
I've been there. Done that. It was very destructive, listening to all kinds of idiot doctors who had no clue at all and gave me misdiagnosis after misdiagnosis for years and years.
Now, AFTER you are well into some success with treating lyme & co., THEN, PERHAPS neurofeedback will be of some help. Still, that PhD is not the person to see as you would need someone who is LL.
But, really Tai Chi and Qi Gong do the same thing for brain retraining to a large degree (though that part would not come right away during active lyme - still, you can benefit from either NOW - and benefit in many other ways.
2. Speaking from my own experience and the collective experience of others:
It's time to break away and get smart about lyme - to protect yourself from the idiots and be able to find the true experts. We ALL had one such definitive, pivotal, experience where we knew we had to get smarter about lyme than the idiots we had been paying.
You do not have the money, time or energy to waste on ANY adjunct stuff that is not directed by someone who is lyme literate. Adjunct methods are necessary but only the top tier methods that have a solid reason and are guided by knowledge of lyme & co.
It is vital to steer clear - way clear - of those who are ignorant.
Fortunately, there is now a good bit of information that explains all this. When I was diagnosed, there were two books, the internet had not yet even been "created" and my doctors all said I was just nuts.
I believed them for a while and took their psychoactive or psycho-numbing drugs and got far worse. No MD in my state would consider lyme then, or now.
I wish you a different path. A very different path, indeed. It is possible to get better. Really. Hold onto that. -
[ 11-25-2012, 05:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- THE BASICS ------------------------
Although you've been diagnosed with lyme, there are other things to also consider:
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
Although you do not need another lyme test, it's important to have a passing knowledge of why testing is so tricky should you ever need to "defend" yourself or help others:
See listener comments, too. They show us how very wrong the ID doctor is who was interviewed. Very typical, though, and why ID doctors are not the ones who help those with lyme. -
[ 11-25-2012, 05:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Specifically addressing mood symptoms - which are due to neurotoxicity:
- explores the neurological, emotional, psychological, psychiatric - and toxic ways - that lyme and other tick-borne infections can affect emotions, thoughts and behavior - and psyche.
Find a LL therapist, counselor or psychologist. Your LLMD may be able to suggest someone or the area lyme support groups with a hundred mile radius to you may have referrals.
If your LLMD think you may need psychiatric medicines, he or she may have the name of a LL psychiatrist or the LLMD may be able to guide you with certain Rx, to a degree.
However, for many with lyme, when the symptoms are addressed and the support is in place, mood usually stabilizes. Now, it's no walk in the park and takes a while but, with good LL guidance, it gets easier to make sense of it all.
It's very important that you find someone well educated in this area to talk to and sort out reality as well as develop coping skills.
I cannot stress enough the importance of this. But they MUST be lyme literate to be of any use to you.
Be sure to find your area lyme support groups, too. They can be a tremendous good to help ground you through all this. -
[ 11-25-2012, 05:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Right now, as you search for a LLMD your best helpers:
MAGNESIUM, FISH OIL, MILK THISTLE - as detailed in the liver support thread previously posted. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hanna,
I know all this is a lot to take in all at once, and it's just the tip of the iceberg for real information about lyme & co. Just the tip.
So that you don't tip over from "overload" be sure to take this at your own pace. Copy and paste this thread link to your easy access research file so you can access it along the way.
I hope you find a good LLMD who will address all relevant aspects and I truly wish you some peace as you take a deep breath, let go and then dust yourself off and take the first steps on a new path, a new way of approaching this.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, thank you so much for all of the information. I have a lot to look over and a lot to learn.
Posts: 27 | From Jacksonville, Florida, USA | Registered: Nov 2012
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I think I'll move this to Medical Questions where more people will see it.![[group hug]](graemlins/grouphug.gif)
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