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Could Lyme cause dementia in my 26 yr old?
Im sorry this is a little long but if you are a mother and knowing how diffucult seeing a child of your suffer. Any informaton is so appreciated. Im a mother of a previously healthy 26 year old daughter. I have been searching for answers for 2 years on the internet and through tons of doctors and University hospitals.
We were on the Lyme path for awhile but the latest Dr has disbanned it completely. My daughter currently is homebound is having DIFFUCLTY SWALLOWING AND BREATHING SHE IS CHOKING AND WHEN SHE HAS A SEVERE STIFF NECK AND HAEDACHE IN BACK OF HEAD WITH BLURRED VISION AND SEVERE DIZZINESS, MILD DEMENTIA IS PROGRESSING SHE SOMETIMES DOESNT RECOGNIZE ANYONE CAN LATE LYME ENCEPHALOPATHY DO THIS? ALL HER TEST ARE NEGATIVE I AM OUT OF OPTIONS NEXT IS A SPINAL TAP BUT WE HAVE BEEN DELAYIN GHOPING BLOODWORK AND LESS INVASIVE TEST WOULD SHOW MORE.WE HAVE NO ANSWERS AND SHE IS DECLING SEVERLY. WE HAVE GONE TO EMERGENCY AND THEY GAVE HER OXGEN DID BASIC BLOODWORK AND DISCHARGED HER. Which leaves us back to the beginning. It began very subtly 2 and half yrs ago my daughter who is a ivy league graduate and the most out going personality and vibrant girl you could meet, it began rather suddenly she was feeling very fatigued.
She then developed a blisterish rash on her chest, in which the drs referred to infectious drs and they did an chest x ray that was negative resulted but no skin biopsy was done.
She started to isolate herself and personality was slightly diffrent a little withdrawn and depressed. She was having a stiff neck develop at this time too.
We were referred to a nuerologist and they did an mri of brain with contrast which we were told was normal.
Bloodwork was run but all negative. So as months went on she was continueing to complain of slight stiff neck and joint stiffness with a change in not feeling herself, she said she was thinkig foggy and feeling disorieneted at times.
But she was continuing her every day nontheless with slight decrease in energy performance that others would not notice other then herself. She then started having attacks during sleep where she would wake in hysteria complaing she didnt know where she was or who she was. By the next day the delerium would be gone.
I would take her temp and it would be 99.99 usually which is low grade tempature for her. Luckily she was living home I was there during these attacks. As another year went by she was complaining of severe dizzy spells where I would find her on the floor while we were out somewhere because she compalined the room was spinning and her balance was way off. When these episodes ended she would be strong enough to get back to her life.
But at this point she was still fairly strong and given her young age and very big career path she is on, I beleieved maybe stress or vertigo was happening. Since her MRI was thankfully clear. As the next year came she began complaining of mild cognitive change to memory and not feeling her strong smart self that came so easily, she also kept telling me her eyelids felt so weak at times she felt like they were closing on her automatically.
So since she didnt have real mild cognitive changes until now, we went back to the nuerologist in June 2011 who performed a nueropyscholigical test which tested memory call, and executive functioning and visual signs to see if she was experiencing a decling in cognition. But the test was said that she fell in regular ranges, but for a highly intelligent girl I was not thrilled with average but still she passed that she was not in severe memory loss.
So as the months went further she began to decline very quickly her neck became so stiff that she couldnot bend at all and her vision blurred and severe photophobia. She had to quit her job at 26 due to these symptoms.
We then were referred to a movement disorder dr from a huge university hospital. He did a long exam with her and resulted that she didnt have a movement disorder nor nueromuscluar which is ALS type disorders and he was not sure why her neck was so stiff but thought she should see an infectious disease dr for lyme.In October my daughter began to drastic psychosis talking very off and not herself. This last stage has developed into a complete personality change and she is complaining to me she does not recognize herself, she is not really walking; her neck and back are so stiff she cant balance herself; she is choking on food and somedays isnt recognizing anyone. I just got her to a Lyme Dr and he thinks a spinal tap is needed. I wonder why it wasnt done before but he said when Drs see a beautiful girl who is having symptoms that are non specific with no radiological evidence or extensive negative bloodwork, a spinal tap is not a choice since it is invasive. He also noted menigitis would not last almost 3 years and would be more sudden over days. Lyme could cause this in a normally healthy girl but doesnt always show on bloodwork, but he tested for extensive co infections Lyme can cause and develop into other infection in the CNS.CNS could cause dementia like syndromes dr said. So his blood work showed all negative related to infections for Lyme . He noted not only were they negative but the numbers werent even close to the border range, the only positive is her ANA titer.I have looked up ANA titer positive and conective tissie diseases like lupus and Sjordens? Should I stop pursing Lymes? I know a spinal tap will show lyme and co infections but until then I am so worried my daughters my life I dont know what to do; she is declining rapidly in front of us. She now is choking alot and her her breathing is shortened; she complains when she is alert.
I am researching and Lymes still is a top match but other neurodegenerative disease are too like PSP, ALS, and MS with Dementia. Any advise or similar journey I will be so grateful and appreciate. My daughter lives in a lyme area and we thought would be the most likely. None of these other disorders run in our family and she is very young for early onset movement disorders all the drs believed. Thanks for any help ahead of time Any advise would help so much.
We were on the Lyme path for awhile but the latest Dr has disbanned it completely. My daughter currently is homebound is having DIFFUCLTY SWALLOWING AND BREATHING SHE IS CHOKING AND WHEN SHE HAS A SEVERE STIFF NECK AND HAEDACHE IN BACK OF HEAD WITH BLURRED VISION AND SEVERE DIZZINESS, MILD DEMENTIA IS PROGRESSING SHE SOMETIMES DOESNT RECOGNIZE ANYONE CAN LATE LYME ENCEPHALOPATHY DO THIS? ALL HER TEST ARE NEGATIVE I AM OUT OF OPTIONS NEXT IS A SPINAL TAP BUT WE HAVE BEEN DELAYIN GHOPING BLOODWORK AND LESS INVASIVE TEST WOULD SHOW MORE.WE HAVE NO ANSWERS AND SHE IS DECLING SEVERLY. WE HAVE GONE TO EMERGENCY AND THEY GAVE HER OXGEN DID BASIC BLOODWORK AND DISCHARGED HER. Which leaves us back to the beginning. It began very subtly 2 and half yrs ago my daughter who is a ivy league graduate and the most out going personality and vibrant girl you could meet, it began rather suddenly she was feeling very fatigued.
She then developed a blisterish rash on her chest, in which the drs referred to infectious drs and they did an chest x ray that was negative resulted but no skin biopsy was done.
She started to isolate herself and personality was slightly diffrent a little withdrawn and depressed. She was having a stiff neck develop at this time too.
We were referred to a nuerologist and they did an mri of brain with contrast which we were told was normal.
Bloodwork was run but all negative. So as months went on she was continueing to complain of slight stiff neck and joint stiffness with a change in not feeling herself, she said she was thinkig foggy and feeling disorieneted at times.
But she was continuing her every day nontheless with slight decrease in energy performance that others would not notice other then herself. She then started having attacks during sleep where she would wake in hysteria complaing she didnt know where she was or who she was. By the next day the delerium would be gone.
I would take her temp and it would be 99.99 usually which is low grade tempature for her. Luckily she was living home I was there during these attacks. As another year went by she was complaining of severe dizzy spells where I would find her on the floor while we were out somewhere because she compalined the room was spinning and her balance was way off. When these episodes ended she would be strong enough to get back to her life.
But at this point she was still fairly strong and given her young age and very big career path she is on, I beleieved maybe stress or vertigo was happening. Since her MRI was thankfully clear. As the next year came she began complaining of mild cognitive change to memory and not feeling her strong smart self that came so easily, she also kept telling me her eyelids felt so weak at times she felt like they were closing on her automatically.
So since she didnt have real mild cognitive changes until now, we went back to the nuerologist in June 2011 who performed a nueropyscholigical test which tested memory call, and executive functioning and visual signs to see if she was experiencing a decling in cognition. But the test was said that she fell in regular ranges, but for a highly intelligent girl I was not thrilled with average but still she passed that she was not in severe memory loss.
So as the months went further she began to decline very quickly her neck became so stiff that she couldnot bend at all and her vision blurred and severe photophobia. She had to quit her job at 26 due to these symptoms.
We then were referred to a movement disorder dr from a huge university hospital. He did a long exam with her and resulted that she didnt have a movement disorder nor nueromuscluar which is ALS type disorders and he was not sure why her neck was so stiff but thought she should see an infectious disease dr for lyme.In October my daughter began to drastic psychosis talking very off and not herself. This last stage has developed into a complete personality change and she is complaining to me she does not recognize herself, she is not really walking; her neck and back are so stiff she cant balance herself; she is choking on food and somedays isnt recognizing anyone. I just got her to a Lyme Dr and he thinks a spinal tap is needed. I wonder why it wasnt done before but he said when Drs see a beautiful girl who is having symptoms that are non specific with no radiological evidence or extensive negative bloodwork, a spinal tap is not a choice since it is invasive. He also noted menigitis would not last almost 3 years and would be more sudden over days. Lyme could cause this in a normally healthy girl but doesnt always show on bloodwork, but he tested for extensive co infections Lyme can cause and develop into other infection in the CNS.CNS could cause dementia like syndromes dr said. So his blood work showed all negative related to infections for Lyme . He noted not only were they negative but the numbers werent even close to the border range, the only positive is her ANA titer.I have looked up ANA titer positive and conective tissie diseases like lupus and Sjordens? Should I stop pursing Lymes? I know a spinal tap will show lyme and co infections but until then I am so worried my daughters my life I dont know what to do; she is declining rapidly in front of us. She now is choking alot and her her breathing is shortened; she complains when she is alert.
I am researching and Lymes still is a top match but other neurodegenerative disease are too like PSP, ALS, and MS with Dementia. Any advise or similar journey I will be so grateful and appreciate. My daughter lives in a lyme area and we thought would be the most likely. None of these other disorders run in our family and she is very young for early onset movement disorders all the drs believed. Thanks for any help ahead of time Any advise would help so much.
I don't know if you will get a reply from youvegot -- it's been quite a while since she posted here.
About your aunt: Lyme bacteria have the ability to suppress the human immune system, so there is nothing fighting back against the infection. If it were my aunt, I would find a Lyme specialist without delay to get a second opinion.
It would not surprise me if your professor believes that a short course of doxycycline is all that is needed to cure Lyme, and that any remaining symptoms are simply her immune system over-reacting to the now dead Lyme infection. That is the traditional view of many MDs, and they reject the more progressive approach taken by ILADS-type MDs. ILADS is a voluntary group for MDs who take a more progressive view of diagnosing and treating Lyme. My Lyme doc took the more progressive approach in treatment, and I am fine today. There is a terrible split in the medical community on this point.
About your aunt: Lyme bacteria have the ability to suppress the human immune system, so there is nothing fighting back against the infection. If it were my aunt, I would find a Lyme specialist without delay to get a second opinion.
It would not surprise me if your professor believes that a short course of doxycycline is all that is needed to cure Lyme, and that any remaining symptoms are simply her immune system over-reacting to the now dead Lyme infection. That is the traditional view of many MDs, and they reject the more progressive approach taken by ILADS-type MDs. ILADS is a voluntary group for MDs who take a more progressive view of diagnosing and treating Lyme. My Lyme doc took the more progressive approach in treatment, and I am fine today. There is a terrible split in the medical community on this point.
Never mind my nickname it was a joke... However, your reply to this desperate mother was delivered calm, cool and collective. Your advise is uplifting and full of hope. I have an aunt who was recently diganoised with Lyme. At this point she is unable to walk, difficulty breathing, swallowing and memory lose. Dr believes she's had it for a long time undetected, the body didn't acquire antibodies quickly. They are now testing her for dementia and it seems to make sense to some of the family members and her behavior. While in conversation, she would claim going to many plays and reading many books but asked which ones she cannot recall. I wanted to know if you made a full, 100% recovery? My professor, who is a epidemiologist/infectious disease she would love this story. I happen to be studying lyme disease in my microbiology class, which drew me here.
Welcome to the Lyme page -- sorry you've had to take the long road to dealing with Lyme, but better late than never, eh? Cheers --
Jackie is right that you are being a wonderful MOM. Sorry i should have made that my first sentence in what is my first comment here. I am sending prayers of good Hope out to All who are in need. All we want to do is get better.
I'm a grandma that was bit in '89 by a tick. The Emergency room care I got was horrible. Two trips there to get an embedded-engorged tick removed. Did I have strong enough or a long enough course of antibiotics? Probably not. Vector born diseases (VBD) were just being brought to the medical front. My first tests were by Quest. What a farce. Their antibody tests took less than 24 hrs. to complete. On the 2nd test i had an Igenex kit and sent the same day per instructions. Quest honored me by drawing for them as well as Igenex. Again less than 24 hrs for Quest and 3 weeks for Igenex. Who would you believe for accuracy? I have been slowly wasting away from this insidious disease and now have found an LLMD. Yippee! This LLMD Doctor is suffering the effects of a VBD,so they know we are not hypochondriacs! Hugs around the world for those who are bug bit sick.
Welcome to MedHelp Lyme --
It sounds like you still have Lyme -- are you looking into treatment with a Lyme specialist? It's never too late, from what I read.
It sounds like you still have Lyme -- are you looking into treatment with a Lyme specialist? It's never too late, from what I read.
Oops I meant to say I got Lyme sometime before 1987. I've had it plus or minus 30 years now.
There is a 2nd test for Lyme in which they do a blood culture. That's how I tested positive in 2013. I got it some time before 2013. I had the aching joints, extreme back and neck pain that would be worse after an orgasm. I could write several pages on what I've gone through.
I just want to state explicitly, even though I think I made it obvious, that there is no doubt in my mind whatsoever that your daughter has lyme disease. There is on other illness that can cause all the symptoms she has.
I'm going to be a bit telegrammatic as I have lots ot say and I am getting tired, but here I go:
I had the same story as your daughter. I was at Cambridge university doing a degree in Latin and Greek adn I started forgetting things, being dizzy all the time and having blackouts. I felt more and more tired and had nocturnal freakouts where I would shake and go funny in teh head and these were diagnosed as atypical epilepsy. I forgot all that I was studying and the languages I knew, then I lost the ability to read, then to speak and eventually I could not understand anything that was being said to me in English. I could only recognise my immediate family.
Lyme disease can cause all this lot, but usually when the brain symptoms are so severe that means there is bartonella as a coinfection. It has the same symptoms as lyme but makes your brain go extra bad. It can cause mental regression (like mine), severe psychological problems like depression and panic attacks, or can also cause schizophrenia like symptoms.
There are 16 strains of bartonella and only 2 come up on lab tests, so you need a good ILADs member doctor to diagnose on symptoms most of the time.
If your daughter is geting panic attacks her get heart checked, she needs a ECG and a 24 hour (or 48 hour is better) Holter monitor. Nobody bothered checking my heart as I was a "young, slim attractive younbg woman" (famous last words bymany doctors) and therefore heart disease was considered impossible and I was just having panic attacks. Lyme disease gets in the heart of 7 percent of lyme patients. I had an emergency heart operation in the nick of time and my life was saved, but I do sometimes fantasise about kicking the butt off all the doctors who never bothered to check my heart.
The terrible neck pain adn stiffness is an extension of what is going on your daughter's brain. You get encephalitis (sub-clinical so most doctors do not know how to diagnose it) and this gives you awful pain which runs down your neck and alters the composition of your cerebro-.spinal fluid. When lyme patients have this and get a spinal tap, the removal of this fluid gives them instant pain relife adn makes them feel much better - less pain adn more alert. The effect gradually wears off over the course of 10 days adn there have been cases in research projects where lyme patients went back begging for another spinal tap once the effect wore off.
The ANA titers (which I also have very elevated) are part of this. When you have a chronic inflammatory situation caused by infection, you develop autoimmunity. About ten percent of lyme patients have it. The main provoker of this is allergies, so you need to try to figure out what foods and other things are causing allergies in your daughter - getting rid of those will help reduce inflammation and lower ANA titers.
There's a very good antihistamine called Daosin which you should order online for your daughter (it's not a precription drug) which will help. Most antihistamines just block the receptor sites, but this is the same enzyme that the human body makes, which actually clears it out of the body. No side effects.
I think you should also remove diary and gluten from her diet for at least 6 weeks as a test. I would bet about 80 percent probability this will reduce her inflamamtion and pain drastically.
For her brain and neurological pain symptoms, give her 900mg magnesium a day. You need to get a mix of mag orotate, citrate, etc - all the different forms of nagnesium - - - ate that you can obtain.
Also give her zinc, vitamin A, C and D as these are essential for her immune system to work. Not the RDA (the dose for healthy people who don't actually need it) but the maximum supplementary dose. Lyme disease steals many nutrients from your body and people with severe lyme can get malnutrition no matter how well they eat.
The inflammation and autoimmunity is strongly associated with vitamin D deficiency, give her 2000IU daily. The zinc (60mcg daily for one month, then go down to 40) will get about 300 of her enzyme systems working properly again. The A will help her eyes heal and may reduce the pain she gets from the light. Get vitamin A and beta carotene mixed and take the dose on the pack, don't overdo vit A).
All the info I have given is from my Lyme doctor, BTW.
On a psychological level, try to think of what she used to enjoy when she was a little kid. listening to music? play music to he. Drawing? bring her some art stuff. She needs all your love, and to be treated like your little girl who has no pressure and is only supposed to enjoy herself.
Getting all the sense of responsibility lifted off you and knowing your Mother will take care of it is probably the single best thing that will get you over a Lyme crisis like this.
When I had my total meltdown I was not diagnosed and I got better taking the nutrients I have listed above, with no antibiotics or medicines at all. The thing that helped me most was my mother's love and infinite kindness.
You're always going to be more important than any doctor your daughter ever gets - don't forget how powerful you are.
I had the same story as your daughter. I was at Cambridge university doing a degree in Latin and Greek adn I started forgetting things, being dizzy all the time and having blackouts. I felt more and more tired and had nocturnal freakouts where I would shake and go funny in teh head and these were diagnosed as atypical epilepsy. I forgot all that I was studying and the languages I knew, then I lost the ability to read, then to speak and eventually I could not understand anything that was being said to me in English. I could only recognise my immediate family.
Lyme disease can cause all this lot, but usually when the brain symptoms are so severe that means there is bartonella as a coinfection. It has the same symptoms as lyme but makes your brain go extra bad. It can cause mental regression (like mine), severe psychological problems like depression and panic attacks, or can also cause schizophrenia like symptoms.
There are 16 strains of bartonella and only 2 come up on lab tests, so you need a good ILADs member doctor to diagnose on symptoms most of the time.
If your daughter is geting panic attacks her get heart checked, she needs a ECG and a 24 hour (or 48 hour is better) Holter monitor. Nobody bothered checking my heart as I was a "young, slim attractive younbg woman" (famous last words bymany doctors) and therefore heart disease was considered impossible and I was just having panic attacks. Lyme disease gets in the heart of 7 percent of lyme patients. I had an emergency heart operation in the nick of time and my life was saved, but I do sometimes fantasise about kicking the butt off all the doctors who never bothered to check my heart.
The terrible neck pain adn stiffness is an extension of what is going on your daughter's brain. You get encephalitis (sub-clinical so most doctors do not know how to diagnose it) and this gives you awful pain which runs down your neck and alters the composition of your cerebro-.spinal fluid. When lyme patients have this and get a spinal tap, the removal of this fluid gives them instant pain relife adn makes them feel much better - less pain adn more alert. The effect gradually wears off over the course of 10 days adn there have been cases in research projects where lyme patients went back begging for another spinal tap once the effect wore off.
The ANA titers (which I also have very elevated) are part of this. When you have a chronic inflammatory situation caused by infection, you develop autoimmunity. About ten percent of lyme patients have it. The main provoker of this is allergies, so you need to try to figure out what foods and other things are causing allergies in your daughter - getting rid of those will help reduce inflammation and lower ANA titers.
There's a very good antihistamine called Daosin which you should order online for your daughter (it's not a precription drug) which will help. Most antihistamines just block the receptor sites, but this is the same enzyme that the human body makes, which actually clears it out of the body. No side effects.
I think you should also remove diary and gluten from her diet for at least 6 weeks as a test. I would bet about 80 percent probability this will reduce her inflamamtion and pain drastically.
For her brain and neurological pain symptoms, give her 900mg magnesium a day. You need to get a mix of mag orotate, citrate, etc - all the different forms of nagnesium - - - ate that you can obtain.
Also give her zinc, vitamin A, C and D as these are essential for her immune system to work. Not the RDA (the dose for healthy people who don't actually need it) but the maximum supplementary dose. Lyme disease steals many nutrients from your body and people with severe lyme can get malnutrition no matter how well they eat.
The inflammation and autoimmunity is strongly associated with vitamin D deficiency, give her 2000IU daily. The zinc (60mcg daily for one month, then go down to 40) will get about 300 of her enzyme systems working properly again. The A will help her eyes heal and may reduce the pain she gets from the light. Get vitamin A and beta carotene mixed and take the dose on the pack, don't overdo vit A).
All the info I have given is from my Lyme doctor, BTW.
On a psychological level, try to think of what she used to enjoy when she was a little kid. listening to music? play music to he. Drawing? bring her some art stuff. She needs all your love, and to be treated like your little girl who has no pressure and is only supposed to enjoy herself.
Getting all the sense of responsibility lifted off you and knowing your Mother will take care of it is probably the single best thing that will get you over a Lyme crisis like this.
When I had my total meltdown I was not diagnosed and I got better taking the nutrients I have listed above, with no antibiotics or medicines at all. The thing that helped me most was my mother's love and infinite kindness.
You're always going to be more important than any doctor your daughter ever gets - don't forget how powerful you are.
Hi Healthcraze, I'm reading everything here and I agree with it all. One thing you can start doing immediately is get your daughter High-dose Vitamin C IVs (start with 15 grams and build up each week to 50+ grams). It doesn't matter WHAT DISEASE she has... she can benefit from it. This is my opinion, I'm not a doctor (I guess we have to say that :) Here's the rest of my note.
Your daughter is VERY lucky to have you. You are a loving, wonderful mom. I had many of your daughters symptoms... EXTREMELY tight neck and facial muscle, EXTREME muscle atrophy (neck/face), EXTREME neurological problems, sensitivity to light/sound, EXTREME anxiety, EXTREME heart palpatations, difficulty swallowing, EXTREME neurological problems that seemed psychological (crying spells, didn't feel part of the world, anger, rage, depression, anxiety, anxiety, anxiety, etc.), inability to walk fluidly, couldn't exercise any more, and a bunch bunch more. I was literally dying and didn't know what to do. I like your daughter was "the smart one" and could pretty much figure anything out... but this was so hard because the bacteria was messing with my mind and I didn't know the symptoms of Lyme. I just knew there was a disease called Lyme, that's it.
I was wandering the world alone. I thought it was "all in my head." I was tired of seeing medical people and didn't know what to do. This lasted for almost two years. Then in Nov of last year. I went to a doctor who diagnoses "mystery diseases" and he happened (thank God everyday) to test for Lyme using Western Blot (not accurate but nonetheless if gave me an opportunity to look up what the heck is Lyme!). It said you have a "small infection" I was literally DYING! I didn't need anymore test. I didn't need confirmation. I didn't need an LLMD or anything. I IMMEDIATELY knew I had Lyme. It made sense 100%. My muscles were wasting. It was so scary... but, BUT, BUT
BUT I got my life back. I did antibiotics for 3 weeks and felt horrible. My brain went crazy. I got hallocinations and I was doing so bad. I then went aggressive via alternatives. MANY, many alternatives... not just supplements/vitamins but machines, frequency, other treatments. I still have physical symptoms (neck/face) and feel tired at times. I'm working on these... but my sleep is much better, my mood is much better, my spirit is much better, I'm not dead tired, I can walk fluently, my body is better, my skin is better, my gut is better, I'm not "going crazy, my neorological problems cleared up - I GOT MY BRAIN BACK!!! :)
The human body is very forgiving. But it took an OLYMPIC effort. I worked at it 8 hours a day on treatments. I'm STILL WORKING AT IT. I'm not kidding. It really takes that kind of work.
Don't bother with psychologistl, physical therapist, "pain management" doctors, massage therapist, etc. I went to them all. Did nothing. Only accupunture helped a little. The #1 thing you need to do is get a super comphrenesive blood test to see what is "out of balance" and start to build up your daughter's body nutritionally and through supplements. People with Lyme cannot absorb nutrients so it is going to take a lot of good food, vitamins, supplements, patience and love to get the body healing. Someone who is REALLY weak cannot go and kill, kill, kill... because their body cannot handle the waste from the die-off. Most likely your daughter's adrenals, liver, kidney, gut, etc. are out of balance. Those need to be nurtured and slowly you can start killing Lyme. My opinion (from my experience) is that if you go in for the KILL it will cause all kinds of more problems - this is called a "herx reaction." Herx is crazy.
Hang in there... you're a wonderful mother. Your daughter will thank you.
Your daughter is VERY lucky to have you. You are a loving, wonderful mom. I had many of your daughters symptoms... EXTREMELY tight neck and facial muscle, EXTREME muscle atrophy (neck/face), EXTREME neurological problems, sensitivity to light/sound, EXTREME anxiety, EXTREME heart palpatations, difficulty swallowing, EXTREME neurological problems that seemed psychological (crying spells, didn't feel part of the world, anger, rage, depression, anxiety, anxiety, anxiety, etc.), inability to walk fluidly, couldn't exercise any more, and a bunch bunch more. I was literally dying and didn't know what to do. I like your daughter was "the smart one" and could pretty much figure anything out... but this was so hard because the bacteria was messing with my mind and I didn't know the symptoms of Lyme. I just knew there was a disease called Lyme, that's it.
I was wandering the world alone. I thought it was "all in my head." I was tired of seeing medical people and didn't know what to do. This lasted for almost two years. Then in Nov of last year. I went to a doctor who diagnoses "mystery diseases" and he happened (thank God everyday) to test for Lyme using Western Blot (not accurate but nonetheless if gave me an opportunity to look up what the heck is Lyme!). It said you have a "small infection" I was literally DYING! I didn't need anymore test. I didn't need confirmation. I didn't need an LLMD or anything. I IMMEDIATELY knew I had Lyme. It made sense 100%. My muscles were wasting. It was so scary... but, BUT, BUT
BUT I got my life back. I did antibiotics for 3 weeks and felt horrible. My brain went crazy. I got hallocinations and I was doing so bad. I then went aggressive via alternatives. MANY, many alternatives... not just supplements/vitamins but machines, frequency, other treatments. I still have physical symptoms (neck/face) and feel tired at times. I'm working on these... but my sleep is much better, my mood is much better, my spirit is much better, I'm not dead tired, I can walk fluently, my body is better, my skin is better, my gut is better, I'm not "going crazy, my neorological problems cleared up - I GOT MY BRAIN BACK!!! :)
The human body is very forgiving. But it took an OLYMPIC effort. I worked at it 8 hours a day on treatments. I'm STILL WORKING AT IT. I'm not kidding. It really takes that kind of work.
Don't bother with psychologistl, physical therapist, "pain management" doctors, massage therapist, etc. I went to them all. Did nothing. Only accupunture helped a little. The #1 thing you need to do is get a super comphrenesive blood test to see what is "out of balance" and start to build up your daughter's body nutritionally and through supplements. People with Lyme cannot absorb nutrients so it is going to take a lot of good food, vitamins, supplements, patience and love to get the body healing. Someone who is REALLY weak cannot go and kill, kill, kill... because their body cannot handle the waste from the die-off. Most likely your daughter's adrenals, liver, kidney, gut, etc. are out of balance. Those need to be nurtured and slowly you can start killing Lyme. My opinion (from my experience) is that if you go in for the KILL it will cause all kinds of more problems - this is called a "herx reaction." Herx is crazy.
Hang in there... you're a wonderful mother. Your daughter will thank you.
I just read through this exchange and thought i'd offer my two cents. Any doctor who says IGeneX is a hoax is not an LLMD. If he took the time to investigate it himself, he'd find out they do more advanced testing than other labs and have passed every CDC audit with flying colors. Look for a medical doctor associated with ILADS.
The two bands that are positive could be diagnostically significant if they are Borrelia specific. An LLMD will know how to interpret them. I had 3 bands on my IgM, but only 1 was on of the "official bands" considered by the CDC. But the other two were significant. Also, my IgG only had 1 positive and 1 indeterminate band, negative by everybody's standard. Yet I still had late stage Lyme. My LLMD says that it's the sickest people who test negative as their immune system isn't fighting much anymore.
One concern about seeing a psychologist for your daughter is that they cannot prescribe antibiotics. Natural treatments, like cat's claw and samento and other things can certainly help, but they won't cure it.
It was hard for me to make a decision to pay for IGeneX testing and the LLMD, but friends and family reassured me it was the right thing to do. Health and life are worth it! Lyme has taken the life of some severelyill people. We shouldn't have to pay like this when we have insurance, but the world of Lyme Disease is dysfunctional and confusing.
The two bands that are positive could be diagnostically significant if they are Borrelia specific. An LLMD will know how to interpret them. I had 3 bands on my IgM, but only 1 was on of the "official bands" considered by the CDC. But the other two were significant. Also, my IgG only had 1 positive and 1 indeterminate band, negative by everybody's standard. Yet I still had late stage Lyme. My LLMD says that it's the sickest people who test negative as their immune system isn't fighting much anymore.
One concern about seeing a psychologist for your daughter is that they cannot prescribe antibiotics. Natural treatments, like cat's claw and samento and other things can certainly help, but they won't cure it.
It was hard for me to make a decision to pay for IGeneX testing and the LLMD, but friends and family reassured me it was the right thing to do. Health and life are worth it! Lyme has taken the life of some severelyill people. We shouldn't have to pay like this when we have insurance, but the world of Lyme Disease is dysfunctional and confusing.
"The followed up ANA test for Sjordens and Lupus are negative."
Keep copies of these tests, so later docs won't run them again just because they don't have evidence of the prior tests. Sometimes they need to run them again, but if something has been negative already, it may not be necessary as long as you have proof. Keep your own set of all test results.
"But her ANA is still postive from the orginal test he ordered." I haven't read much on ANA, but am aware that it is a measure of auto-immune disease. There is a website called labtestsonline [dot] org with a nice explanation of ANA and testing, and there can be many reasons for elevated ANA, including reactions to medication, and others. It is not the last word, it is just an indicator.
"Hes now making excuses that the lyme disease medicine that he was going to start her on while hes still trying to figure out other options he cant do now because when she was little she had an allergic reaction to cyclor I had told him and he doesnt want to take a chance in giving her medicine in that family."
There are different antibiotics that Lyme can be treated with, but the traditional one is doxycycline, tho my Lyme doc used something else. The doc may be cautious, or he may, as you note, be unsure of what to do overall.
"So hes referring her to another rhuemtologist for vasulitis(going in circles) for a second opinion and another nuero for movement disorder disease eventhough weve seen tons of each specialist and they said it wasnt in those areas and some were world renown drs and said these diesases would have presented on MRIS already after all this time or extensive bloodwork."
The two groups of docs who are most strongly against diagnosing Lyme and taking it seriously are often rheumatologists and infectious disease docs. Neurologists rank up there too. I would have the same reaction to this advice that you are.
"So I called a lyme dr hes orginally a psyhcologist and all is out of pocket not covered, I hope its worth the money because it seems these drs are one dissapointment after another, and the dr she is currently seeing keep reassuring me its very normal to be in a so called grey zone with many diseases but the longer they cant find something the better, but I dont feel that is the best advice to say to a mother."
Psychologists are usually NOT MDs, but instead PhD, and therefore cannot practice medicine. Is this person an MD? He should be.
"Have you ever heard a medicine laymans terms called cats claw for Lymes ?"
Yes, cats claw is a commonly used herbal treatment. There are two different kinds, "TOA-free" and not TOA-free, but I never figured out why the difference is important. I did some reading but couldn't understand it. Be sure to tell the docs that your daughter has taken it, how much and for how long, so they can factor that in to their assessment of her condition.
There is a whole herbal approach to treating Lyme, and I did some reading on it but went the antibiotic route, since I also had babesiosis, which is like malaria, and that needed antibiotics. There is an herbalist named Stephen Buhner who has written about herbal treatment of Lyme, among other things. I have his book 'Herbal Antibiotics', but it can be heavy going because he is really into the intricacies of herbs -- and I'm not. You can also find information about herbal Lyme treatment online, but as always, be skeptical of you read online ... including here. :)
"Also forgot to mention her Lymes had 2 bands reactive not sure if that means much but by there standards its negative."
Some bands are more important than others, and the longer one has been infected, the less of a reaction there is on the test, even though the infection can still be very strong. Did you get a copy of the test? Future docs would benefit from having a copy in order to see the historical progression. I found it important to have all these records myself, because collecting them from docs later is a very iffy thing -- there is no way to know that the doc's staff really copies everything -- I found doc's staff to be rather lazy in that regard, and you'll never know what you didn't get.
You need a copy of the test because a later doc can see a progression in results that may be meaningful -- Lyme diagnosis and treatment is made up of many collected clues, like in a mystery novel, not just on one single test at one point in time.
Which bands were positive is very important to know, so get the doc to send you a copy of the test, and keep your own set of copies of all these things -- you will see many docs, and you will be the only person with all the data in one place so that you can give copies to the docs going forward. When you get a copy of the test, let us know which bands were positive, and how many +++ signs by each one.
Hang in there -- you are doing great, just keep going.
Keep copies of these tests, so later docs won't run them again just because they don't have evidence of the prior tests. Sometimes they need to run them again, but if something has been negative already, it may not be necessary as long as you have proof. Keep your own set of all test results.
"But her ANA is still postive from the orginal test he ordered." I haven't read much on ANA, but am aware that it is a measure of auto-immune disease. There is a website called labtestsonline [dot] org with a nice explanation of ANA and testing, and there can be many reasons for elevated ANA, including reactions to medication, and others. It is not the last word, it is just an indicator.
"Hes now making excuses that the lyme disease medicine that he was going to start her on while hes still trying to figure out other options he cant do now because when she was little she had an allergic reaction to cyclor I had told him and he doesnt want to take a chance in giving her medicine in that family."
There are different antibiotics that Lyme can be treated with, but the traditional one is doxycycline, tho my Lyme doc used something else. The doc may be cautious, or he may, as you note, be unsure of what to do overall.
"So hes referring her to another rhuemtologist for vasulitis(going in circles) for a second opinion and another nuero for movement disorder disease eventhough weve seen tons of each specialist and they said it wasnt in those areas and some were world renown drs and said these diesases would have presented on MRIS already after all this time or extensive bloodwork."
The two groups of docs who are most strongly against diagnosing Lyme and taking it seriously are often rheumatologists and infectious disease docs. Neurologists rank up there too. I would have the same reaction to this advice that you are.
"So I called a lyme dr hes orginally a psyhcologist and all is out of pocket not covered, I hope its worth the money because it seems these drs are one dissapointment after another, and the dr she is currently seeing keep reassuring me its very normal to be in a so called grey zone with many diseases but the longer they cant find something the better, but I dont feel that is the best advice to say to a mother."
Psychologists are usually NOT MDs, but instead PhD, and therefore cannot practice medicine. Is this person an MD? He should be.
"Have you ever heard a medicine laymans terms called cats claw for Lymes ?"
Yes, cats claw is a commonly used herbal treatment. There are two different kinds, "TOA-free" and not TOA-free, but I never figured out why the difference is important. I did some reading but couldn't understand it. Be sure to tell the docs that your daughter has taken it, how much and for how long, so they can factor that in to their assessment of her condition.
There is a whole herbal approach to treating Lyme, and I did some reading on it but went the antibiotic route, since I also had babesiosis, which is like malaria, and that needed antibiotics. There is an herbalist named Stephen Buhner who has written about herbal treatment of Lyme, among other things. I have his book 'Herbal Antibiotics', but it can be heavy going because he is really into the intricacies of herbs -- and I'm not. You can also find information about herbal Lyme treatment online, but as always, be skeptical of you read online ... including here. :)
"Also forgot to mention her Lymes had 2 bands reactive not sure if that means much but by there standards its negative."
Some bands are more important than others, and the longer one has been infected, the less of a reaction there is on the test, even though the infection can still be very strong. Did you get a copy of the test? Future docs would benefit from having a copy in order to see the historical progression. I found it important to have all these records myself, because collecting them from docs later is a very iffy thing -- there is no way to know that the doc's staff really copies everything -- I found doc's staff to be rather lazy in that regard, and you'll never know what you didn't get.
You need a copy of the test because a later doc can see a progression in results that may be meaningful -- Lyme diagnosis and treatment is made up of many collected clues, like in a mystery novel, not just on one single test at one point in time.
Which bands were positive is very important to know, so get the doc to send you a copy of the test, and keep your own set of copies of all these things -- you will see many docs, and you will be the only person with all the data in one place so that you can give copies to the docs going forward. When you get a copy of the test, let us know which bands were positive, and how many +++ signs by each one.
Hang in there -- you are doing great, just keep going.
Also forgot to mention her Lymes had 2 bands reactive not sure if that means much but by there standards its negative.
Well you were right hes surely dancing in the dark. The followed up ANA test for Sjordens and Lupus are negative. But her ANAN is still postive from the orginal test he orderd. Hes now making excuses that the lyme disease medicine that he was going to start her on while hes still trying to figure out other options he cant do now because when she was little she had an allergic reaction to cyclor I had told him and he doesnt want to take a chance in giving her medicine in that family. So hes referring her to another rhuemtologist for vasulitis(going in circles) for a second opinion and another nuero for movement disorder disease eventhough weve seen tons of each specialist and they said it wasnt in those areas and some were world renown drs and said these diesases would have presented on MRIS already after all this time or extensive bloodwork. So I called a lyme dr hes orginally a psyhcologist and all is out of pocket not covered, I hope its worth the money because it seems these drs are one dissapointment after another, and the dr she is currently seeing keep reassuring me its very normal to be in a so called grey zone with many diseases but the longer they cant find something the better, but I dont feel that is the best advice to say to a mother. Have you ever heard a medicine laymans terms called cats claw for Lymes ? a friend just mentioned it? I have started her on the magnesium!! The poor thing is in such distress. Thanks for all your advice again. Hope all is well on your end.
How much longer before you 'beat feet' out of Texas? A couple of weeks? Hope the time goes by quickly for you.
I agree I had the only one here that was suppose to know about LYme and he actually made me worse. So if you can find an LLMD, that makes the best progress and hope for your daughter.
PS I don't think I mentioned, but I went through 20 docs before I got a diagnosis. One nice doc at a famous medical center couldn't figure out what was wrong with me, and out of desperation ran a bunch of tests, incl. Lyme tests, which came back mildly positive (meaning I was infected). But this nice doc told me that, despite the positive Lyme test, I could not possibly have Lyme, because she had patients with Lyme, and they were 'all near death.' That was the first clue I had that I could have Lyme, and I took that test result and found an LLMD. That was about 5 years ago, and I have my life back now. Other docs continue to say awful things about my LLMD and others, and also about IgeneX labs, just as you have heard from your docs, but it's only because the docs don't know what they don't know. Do what you gotta do to get your daughter taken care of. Your current doc is trying, but he's dancing in the dark, in my nonmedical opinion.
Glad to help -- here are a few comments on your recent post:
"This new dr us an infectious disease but he was recommended as a LLMD he seems very progtrssive and not in the box with bloodwork. His evaluation of her was that he wanted to look for co infections so he tested for babesia and babesiosis but that looks like that was all ?"
--That's a good start. My LLMD tested based on symptoms, and a good doc can do that, but I agree, I would want all the possibilities covered. I'd definitely ask, and since I feel compelled to Do Something in situations like that, I'd be calling the doc's office and telling them "I got X and Y results, but I think there are others in the file, would you please check" or go down there and smile at them over the counter till they go get the file and look.
"It has been 3 weeks and that is all he has done, at this point I think she needs more aggressive care. He said he was going to do research and see if he could discuss with other drs"
--This sounds like a well-meaning doc who is groping his way through unfamiliar territory. Well-meaning is good, but given how ill your child is, I'd be pressing on all fronts.
"He does want to do a spinal tap I think to rule out other diseases so Lyme would be more likely."
--He sounds unsure of himself and the territory. Willing, but unsure.
"He doesn't seem to want to treat her clinically without evidence other than her symptoms."
--That's understandable, but are the tests coming up zero? Again the doc may not be all that experienced in Lyme. The tests are NOT the last word, because the tests are not slamdunk accurate, esp. when a patient has been sick a long time. In my experience and understanding, a Lyme diagnosis is to be made on history and symptoms, with tests helpful but not the last word. This doc sounds like he's test-driven.
"So we're at a stand still again while she gets worse and is now having high fevers and muscle spasms thought her legs." Magnesium may help the muscle spasms -- Lyme bacteria use up magnesium in the body, but it doesn't show as low on blood tests until it is critically low. I am NOT medically trained, but consider trying magnesium supplement, any kind ending in "-ate", such as magnesium citrate, orotate, malate, etc. These are most absorbable by the body, so I read. I take a variety that has three different "-ates" in it.
"The other option is out of networks Drs that I really wasting want to take her because I worry they will misdiagnose and take advantage because it's not through insurance."
--I would just do it. Yes, there are quacks out there, but there are quacks inside medical networks too, and in my experience, docs outside networks are more openminded about Lyme because they don't have an administrator sitting on their heads.
"This was my last resort and her having a spinal tap because u really don't want her having invasive testing but in the beginning she wasn't this sick and now I don't have a choice."
--To my understanding, spinal taps are not particularly diagnostic of Lyme, because the Lyme bacteria do not tend toward living in spinal fluid. I don't know why.
"She was such a heathy girl I just can't imagine drs can't give her a definitive answer."
--Well, that's where you have gotten to, so the decision is what to do now.
"The dr said her case is like putting pieces of a puzzle together and that's why I try to get advice from others because one clue could make the picture make sense. When she started feeling suck 3 years ago in the summer I never imagined it would progress this much. I solid think her symptons starting in summer was a Lyme indication as well."
--Sometimes people are infected and their immune systems manage to hold the disease down, until something else piles on and then all heck breaks loose, so I wouldn't worry too much about what season it is.
"I am going to get the under your skin."
--It's Under OUR Skin
"It seems That drs don't recommend because they do not like sensationalized cases"
--This is true, and I don't like the movie for exactly that reason. But in your daughter's case, you've probably seen the worst already.
"The dr also said he will not send her bloodwork to igenex he said he used to use them and there a hoax, he said he sent his own bloodwork to test them out and everything was positive and they use patients that are desperate for results."
--Why am I not surprised. This would tell me that the doc is not clued in to Lyme at all, and this alone would cause me to find a new doc. This slander against IgeneX is common among docs who will do anything to avoid diagnosing and treating Lyme.
"So the only positive bloodwork so far was the ANA"
--I'd find another doc
"he said could be autoimmune but I did some research and Lyme could cause an immune reaction as well."
--Docs who take the nonLLMD approach believe that Lyme is a quick cure and if you are still sick after a few weeks of antibiotics, then it's not that the infection is still present, it's that your body just THINKS it is still infected and keeps attacking what isn't there anymore. This is the official position of IDSA, the Infectious Disease Society of America, which is the doctors' group standing in the way of progressing in Lyme diagnosis and treatment. If this is how your doc thinks, I'd find another doc.
"My daughter went to 4 rhumetologust I think if she had lupus it would have been an easier find."
--Of course it would. Rheumatologists are Lyme deniers as well.
"So waiting on the further ANA test he's doing currently I am just baffled on the dementia like symptoms that are priogressung with the stiff neck, which others have informed me untreated Lyme can cause a type if menigitis that is not acute and is slowly progressive which is contrary to what the dr said. But friends if mine have told me who have had family who had untreated Lyme develop thus."
--Walk on the wild side and find an LLMD. I would not wait another day.
You don't have to blow off your current doc; dont' even tell him you are seeing an LLMD, just do it on the sly. It's still a free country, and ultimately you are the only one who can look out for your daughter.
I'm sure your doc believes he is doing the right thing, but docs can be terribly, awfully wrong. I don't to make you feel worse or worry more, but not all docs are created equal, and while your doc is following what he has been taught and what he believes, he can be wrong. Very wrong.
"This new dr us an infectious disease but he was recommended as a LLMD he seems very progtrssive and not in the box with bloodwork. His evaluation of her was that he wanted to look for co infections so he tested for babesia and babesiosis but that looks like that was all ?"
--That's a good start. My LLMD tested based on symptoms, and a good doc can do that, but I agree, I would want all the possibilities covered. I'd definitely ask, and since I feel compelled to Do Something in situations like that, I'd be calling the doc's office and telling them "I got X and Y results, but I think there are others in the file, would you please check" or go down there and smile at them over the counter till they go get the file and look.
"It has been 3 weeks and that is all he has done, at this point I think she needs more aggressive care. He said he was going to do research and see if he could discuss with other drs"
--This sounds like a well-meaning doc who is groping his way through unfamiliar territory. Well-meaning is good, but given how ill your child is, I'd be pressing on all fronts.
"He does want to do a spinal tap I think to rule out other diseases so Lyme would be more likely."
--He sounds unsure of himself and the territory. Willing, but unsure.
"He doesn't seem to want to treat her clinically without evidence other than her symptoms."
--That's understandable, but are the tests coming up zero? Again the doc may not be all that experienced in Lyme. The tests are NOT the last word, because the tests are not slamdunk accurate, esp. when a patient has been sick a long time. In my experience and understanding, a Lyme diagnosis is to be made on history and symptoms, with tests helpful but not the last word. This doc sounds like he's test-driven.
"So we're at a stand still again while she gets worse and is now having high fevers and muscle spasms thought her legs." Magnesium may help the muscle spasms -- Lyme bacteria use up magnesium in the body, but it doesn't show as low on blood tests until it is critically low. I am NOT medically trained, but consider trying magnesium supplement, any kind ending in "-ate", such as magnesium citrate, orotate, malate, etc. These are most absorbable by the body, so I read. I take a variety that has three different "-ates" in it.
"The other option is out of networks Drs that I really wasting want to take her because I worry they will misdiagnose and take advantage because it's not through insurance."
--I would just do it. Yes, there are quacks out there, but there are quacks inside medical networks too, and in my experience, docs outside networks are more openminded about Lyme because they don't have an administrator sitting on their heads.
"This was my last resort and her having a spinal tap because u really don't want her having invasive testing but in the beginning she wasn't this sick and now I don't have a choice."
--To my understanding, spinal taps are not particularly diagnostic of Lyme, because the Lyme bacteria do not tend toward living in spinal fluid. I don't know why.
"She was such a heathy girl I just can't imagine drs can't give her a definitive answer."
--Well, that's where you have gotten to, so the decision is what to do now.
"The dr said her case is like putting pieces of a puzzle together and that's why I try to get advice from others because one clue could make the picture make sense. When she started feeling suck 3 years ago in the summer I never imagined it would progress this much. I solid think her symptons starting in summer was a Lyme indication as well."
--Sometimes people are infected and their immune systems manage to hold the disease down, until something else piles on and then all heck breaks loose, so I wouldn't worry too much about what season it is.
"I am going to get the under your skin."
--It's Under OUR Skin
"It seems That drs don't recommend because they do not like sensationalized cases"
--This is true, and I don't like the movie for exactly that reason. But in your daughter's case, you've probably seen the worst already.
"The dr also said he will not send her bloodwork to igenex he said he used to use them and there a hoax, he said he sent his own bloodwork to test them out and everything was positive and they use patients that are desperate for results."
--Why am I not surprised. This would tell me that the doc is not clued in to Lyme at all, and this alone would cause me to find a new doc. This slander against IgeneX is common among docs who will do anything to avoid diagnosing and treating Lyme.
"So the only positive bloodwork so far was the ANA"
--I'd find another doc
"he said could be autoimmune but I did some research and Lyme could cause an immune reaction as well."
--Docs who take the nonLLMD approach believe that Lyme is a quick cure and if you are still sick after a few weeks of antibiotics, then it's not that the infection is still present, it's that your body just THINKS it is still infected and keeps attacking what isn't there anymore. This is the official position of IDSA, the Infectious Disease Society of America, which is the doctors' group standing in the way of progressing in Lyme diagnosis and treatment. If this is how your doc thinks, I'd find another doc.
"My daughter went to 4 rhumetologust I think if she had lupus it would have been an easier find."
--Of course it would. Rheumatologists are Lyme deniers as well.
"So waiting on the further ANA test he's doing currently I am just baffled on the dementia like symptoms that are priogressung with the stiff neck, which others have informed me untreated Lyme can cause a type if menigitis that is not acute and is slowly progressive which is contrary to what the dr said. But friends if mine have told me who have had family who had untreated Lyme develop thus."
--Walk on the wild side and find an LLMD. I would not wait another day.
You don't have to blow off your current doc; dont' even tell him you are seeing an LLMD, just do it on the sly. It's still a free country, and ultimately you are the only one who can look out for your daughter.
I'm sure your doc believes he is doing the right thing, but docs can be terribly, awfully wrong. I don't to make you feel worse or worry more, but not all docs are created equal, and while your doc is following what he has been taught and what he believes, he can be wrong. Very wrong.
I also have Neuro Lyme and have many of the same symptoms that your daughter has. My first MRI of the brain was "Normal" yet a few months later the brain MRI showed lesions and white matter damage, which they said can be reversed with an LLMD. It got to the point where it would affect my muscle strength, eye sight and my memory is really not there anymore. The more stress I have, the worse I feel. I also never heard of a spinal tap for the answers.I live in a state famous for having no LLMD and I realize now that you must get the co-infections treated to ever really get better. I have been waiting months to move to where there is an LLMD and will get there soon.
Good luck and hope she does better.
Good luck and hope she does better.
Thank you so much for your insight!
I do have all of her tests in a huge file for each dr so it cumilates, as we see each new dr. But it seems that sometimes there is a downside because drs seem to get lazy and just quickly look over other drs orders and especially when bloodwork is showing negative for a lot of test they quickly dismiss her. So it makes them get out of doing all the test plus using there own knowledge to test for something missed. I never realized even the top drs like to cut corners, but when it comes to my daughter I will never allow it.
So thank you for giving me advice I seem to get better insight from people who either dealt with it first hand or had a family member that did. Drs don't always know what the patient is feeling and I think not all diseases are black and white. My daughter is suffering terribly she's had 2 major migraines recently that. She blacked out she was in so much pain,it seems her neck is do aggregated it is worsening neurological symptoms and her knees are locking on her so walking has been declining.
This new dr us an infectious disease but he was recommended as a LLMD he seems very progtrssive and not in the box with bloodwork. His evaluation of her was that he wanted to look for co infections so he tested for babesia and babesiosis but that looks like that was all ? I think there is more but that was only what I found on the test results. It has been 3 weeks and that is all he has done, at this point I think she needs more aggressive care. He said he was going to do research and see if he could discuss with other drs, but my daughter has got worse and he hasn't dine much more like he promised. He does want to do a spinal tap I think to rule out other diseases do Lyme would be more likely. He doesn't seem to want to treat her clinically without evidence other than her symptoms. So we're at a stand still again while she gets worse and is now having high fevers and muscle spasms thought her legs.
The other option is out of networks Drs that I really wasting want to take her because I worry they will misdiagnose and take advantage because it's not through insurance. This was my last resort and her having a spinal tap because u really don't want her having invasive testing but in the beginning she wasn't this sick and now I don't have a choice. She was such a heathy girl I just can't imagine drs can't give her a definitive answer. The dr said her case is like putting pieces of a puzzle together and that's why I try to get advice from others because one clue could make the picture make sense. When she started feeling suck 3 years ago in the summer I never imagined it would progress this much. I solid think her symptons starting in summer was a Lyme indication as well. I am going to get the under your skin . It seems That drs don't recommend because they do not like sensationalized cases I think they are confused themselves and embarrasses they are not understanding lymes fully. But I have to educate myself it seems and do there job, which I appreciate your suggestions because the more I learn the better.
The dr also said he will not send her bloodwork to igenex he said he used to use them and there a hoax, he said he sent his own bloodwork to test them out and everything was positive and they use patients that are desperate for results. So the only positive bloodwork so far was the ANA he said could be autoimmune but I did some research and Lyme could cause an immune reaction as well. My daughter went to 4 rhumetologust I think if she had lupus it would have been an easier find. So waiting on the further ANA test he's doing currently I am just baffled on the dementia like symptoms that are priogressung with the stiff neck, which others have informed me untreated Lyme can cause a type if menigitis that is not acute and is slowly progressive which is contrary to what the dr said. But friends if mine have told me who have had family who had untreated Lyme develop thus. So it seems to be a complicated disease if that's what it is. I will keep you posted. I thank you for your help do much! There are still good people left just hope there in the medical field still ! Thanks and wish you well too!
I do have all of her tests in a huge file for each dr so it cumilates, as we see each new dr. But it seems that sometimes there is a downside because drs seem to get lazy and just quickly look over other drs orders and especially when bloodwork is showing negative for a lot of test they quickly dismiss her. So it makes them get out of doing all the test plus using there own knowledge to test for something missed. I never realized even the top drs like to cut corners, but when it comes to my daughter I will never allow it.
So thank you for giving me advice I seem to get better insight from people who either dealt with it first hand or had a family member that did. Drs don't always know what the patient is feeling and I think not all diseases are black and white. My daughter is suffering terribly she's had 2 major migraines recently that. She blacked out she was in so much pain,it seems her neck is do aggregated it is worsening neurological symptoms and her knees are locking on her so walking has been declining.
This new dr us an infectious disease but he was recommended as a LLMD he seems very progtrssive and not in the box with bloodwork. His evaluation of her was that he wanted to look for co infections so he tested for babesia and babesiosis but that looks like that was all ? I think there is more but that was only what I found on the test results. It has been 3 weeks and that is all he has done, at this point I think she needs more aggressive care. He said he was going to do research and see if he could discuss with other drs, but my daughter has got worse and he hasn't dine much more like he promised. He does want to do a spinal tap I think to rule out other diseases do Lyme would be more likely. He doesn't seem to want to treat her clinically without evidence other than her symptoms. So we're at a stand still again while she gets worse and is now having high fevers and muscle spasms thought her legs.
The other option is out of networks Drs that I really wasting want to take her because I worry they will misdiagnose and take advantage because it's not through insurance. This was my last resort and her having a spinal tap because u really don't want her having invasive testing but in the beginning she wasn't this sick and now I don't have a choice. She was such a heathy girl I just can't imagine drs can't give her a definitive answer. The dr said her case is like putting pieces of a puzzle together and that's why I try to get advice from others because one clue could make the picture make sense. When she started feeling suck 3 years ago in the summer I never imagined it would progress this much. I solid think her symptons starting in summer was a Lyme indication as well. I am going to get the under your skin . It seems That drs don't recommend because they do not like sensationalized cases I think they are confused themselves and embarrasses they are not understanding lymes fully. But I have to educate myself it seems and do there job, which I appreciate your suggestions because the more I learn the better.
The dr also said he will not send her bloodwork to igenex he said he used to use them and there a hoax, he said he sent his own bloodwork to test them out and everything was positive and they use patients that are desperate for results. So the only positive bloodwork so far was the ANA he said could be autoimmune but I did some research and Lyme could cause an immune reaction as well. My daughter went to 4 rhumetologust I think if she had lupus it would have been an easier find. So waiting on the further ANA test he's doing currently I am just baffled on the dementia like symptoms that are priogressung with the stiff neck, which others have informed me untreated Lyme can cause a type if menigitis that is not acute and is slowly progressive which is contrary to what the dr said. But friends if mine have told me who have had family who had untreated Lyme develop thus. So it seems to be a complicated disease if that's what it is. I will keep you posted. I thank you for your help do much! There are still good people left just hope there in the medical field still ! Thanks and wish you well too!
Oh, and one more comment I meant to make: low body temperature is not uncommon in Lyme, because the bacteria have a strong effect on the whole endocrine system, including body temp regulation. My own temp was 96 something while I was ill, now back up to 98 something.
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Also, a spinal tap is usually not used to diagnose Lyme, because the Lyme bacteria are often not found in spinal fluid. You say in your message:
"I just got her to a Lyme Dr and he thinks a spinal tap is needed." -- Again, Lyme specialists do not generally rely on spinal taps to diagnose or rule out Lyme, so I'm not sure what specialty this doctor is. Is he a neurologist or an infectious disease (ID) doc? Those are the docs who would, in a normal world, diagnose and treat Lyme, but in the squirrely situation we are in at the moment, many neuros and ID docs simply don't understand Lyme. I went to a couple of neuros and at least one ID doc, and they were clueless why I was sick. I would take my daughter to a Lyme specialist who thinks outside the box that most neuros and ID docs live in. More on that in a minute.
You also say: "He also noted meningitis would not last almost 3 years and would be more sudden over days." Good, I'm glad the doc is thinking things through and talking to you about them.
You say that the doc also said: "Lyme could cause this in a normally healthy girl but doesnt always show on bloodwork," -- correct! -- "but he tested for extensive co infections Lyme can cause and develop into other infection in the CNS." Not sure about the CNS, but he may be right.
"CNS [infection] could cause dementia-like syndromes dr said." Sounds reasonable.
"So his blood work showed all negative related to infections for Lyme." The tests are not very accurate and should not be the last word.
"He noted not only were they negative but the numbers werent even close to the border range, the only positive is her ANA titer." I believe I have read that Lyme can also cause that result.
"I have looked up ANA titer positive and conective tissie diseases like lupus and Sjordens?" I've read the same. Doesn't' necessarily mean it can't be Lyme.
"Should I stop pursuing Lymes?" I cannot tell from your recounting of what the doc has said whether he is clued in about Lyme or not. In your situation, I would find a Lyme specialist (an "LLMD") and get a work up. Take copies of all the prior test results with you, because it may show things that the Lyme doc sees as significant that other docs did not. An LLMD is not an official title, but is patient slang for 'Lyme Literate MD', meaning an MD who thinks bigger and more progressive thoughts than mainstream docs. If you ask a doc is he is an LLMD, he will either not know what you are talking about or may get all huffy because mainstream docs dealing with Lyme really do not trust LLMDs and their approach to diagnosis and treatment.
Do you have copies of your daughter's Lyme tests? If so, what labs were they done at? IgeneX is a lab that Lyme docs like because it measures the actual bacteria in the blood, not the body's reaction to the bacteria, which as noted above can fade with time. The current doc sounds like he is trying hard, but if he is not 'Lyme literate', he may not understand the wider implications of the situation.
You don't need to tell the current doc you are going to see an LLMD for a second opinion; just do it.
There was a movie that came out a year or so ago called 'Under Our Skin', a documentary about some young people with Lyme. I personally didn't care for it, because I thought it was emphasizing the scary side of Lyme, showing people with muscle wasting and twitching that not everyone gets, but it sounds like your daughter may be experiencing severe symptoms as well. You might want to rent the movie and watch it. When I saw the movie, it had just been released, and the director and a number of the patients who were in the movie also attended the screening I went to. They were up on stage after the movie to answer questions, but the introductions were not done well, and it was only far into the comments that I realized that the healthy, happy people up on stage that night were the very very ill people in the movie, only now they are well.
Your daughter is very fortunate to have you looking out for her. I can tell you are doing everything you can think of to help her, and that makes all the difference. Please let us know what you do and how it goes -- no one here is medically trained, but we have collectively been through (or are still going through) our own very bad times, and perhaps can give you some ideas.
We'll be thinking of you, and wishing you all the best --
Also, a spinal tap is usually not used to diagnose Lyme, because the Lyme bacteria are often not found in spinal fluid. You say in your message:
"I just got her to a Lyme Dr and he thinks a spinal tap is needed." -- Again, Lyme specialists do not generally rely on spinal taps to diagnose or rule out Lyme, so I'm not sure what specialty this doctor is. Is he a neurologist or an infectious disease (ID) doc? Those are the docs who would, in a normal world, diagnose and treat Lyme, but in the squirrely situation we are in at the moment, many neuros and ID docs simply don't understand Lyme. I went to a couple of neuros and at least one ID doc, and they were clueless why I was sick. I would take my daughter to a Lyme specialist who thinks outside the box that most neuros and ID docs live in. More on that in a minute.
You also say: "He also noted meningitis would not last almost 3 years and would be more sudden over days." Good, I'm glad the doc is thinking things through and talking to you about them.
You say that the doc also said: "Lyme could cause this in a normally healthy girl but doesnt always show on bloodwork," -- correct! -- "but he tested for extensive co infections Lyme can cause and develop into other infection in the CNS." Not sure about the CNS, but he may be right.
"CNS [infection] could cause dementia-like syndromes dr said." Sounds reasonable.
"So his blood work showed all negative related to infections for Lyme." The tests are not very accurate and should not be the last word.
"He noted not only were they negative but the numbers werent even close to the border range, the only positive is her ANA titer." I believe I have read that Lyme can also cause that result.
"I have looked up ANA titer positive and conective tissie diseases like lupus and Sjordens?" I've read the same. Doesn't' necessarily mean it can't be Lyme.
"Should I stop pursuing Lymes?" I cannot tell from your recounting of what the doc has said whether he is clued in about Lyme or not. In your situation, I would find a Lyme specialist (an "LLMD") and get a work up. Take copies of all the prior test results with you, because it may show things that the Lyme doc sees as significant that other docs did not. An LLMD is not an official title, but is patient slang for 'Lyme Literate MD', meaning an MD who thinks bigger and more progressive thoughts than mainstream docs. If you ask a doc is he is an LLMD, he will either not know what you are talking about or may get all huffy because mainstream docs dealing with Lyme really do not trust LLMDs and their approach to diagnosis and treatment.
Do you have copies of your daughter's Lyme tests? If so, what labs were they done at? IgeneX is a lab that Lyme docs like because it measures the actual bacteria in the blood, not the body's reaction to the bacteria, which as noted above can fade with time. The current doc sounds like he is trying hard, but if he is not 'Lyme literate', he may not understand the wider implications of the situation.
You don't need to tell the current doc you are going to see an LLMD for a second opinion; just do it.
There was a movie that came out a year or so ago called 'Under Our Skin', a documentary about some young people with Lyme. I personally didn't care for it, because I thought it was emphasizing the scary side of Lyme, showing people with muscle wasting and twitching that not everyone gets, but it sounds like your daughter may be experiencing severe symptoms as well. You might want to rent the movie and watch it. When I saw the movie, it had just been released, and the director and a number of the patients who were in the movie also attended the screening I went to. They were up on stage after the movie to answer questions, but the introductions were not done well, and it was only far into the comments that I realized that the healthy, happy people up on stage that night were the very very ill people in the movie, only now they are well.
Your daughter is very fortunate to have you looking out for her. I can tell you are doing everything you can think of to help her, and that makes all the difference. Please let us know what you do and how it goes -- no one here is medically trained, but we have collectively been through (or are still going through) our own very bad times, and perhaps can give you some ideas.
We'll be thinking of you, and wishing you all the best --
I am so very sorry to hear what you all are going through. Your daughter is fortunate to have you there looking out for her.
From your comments, it sounds like you are aware that there is controversy in the medical community about Lyme, how widespread it is or isn't, what the symptoms are, and how to diagnose and treat it.
I am NOT medically trained, but I went through a very bad year looking for a diagnosis for myself, and 20 doctors later learned I had Lyme ... but the endocrinologist who ran the test that was positive for Lyme said I could not possibly have Lyme, because I wasn't sick enough ... and I was very ill. This was a very nice, very experienced and kindly doc who practices at a major medical institution, but like many in the medical field, she is not up to speed on the research that has been done in recent years and continues to develop now. It sounds like your daughter's docs may suffer from that same blind spot.
You are already aware that there are other diseases that often come along with Lyme, carried by the same ticks, and they have their own sets of varying symptoms, and each person also reacts differently to those infections, so that is one reason docs have a hard time seeing Lyme when it is right in front of them. You don't say what other infections your daughter was tested for, but I would be interested to know out of curiosity.
On top of different infections with different symptoms, the different combinations of infections show up differently in each person, I think because our immune systems all react differently. Just on this website and from people I know personally who have had Lyme, we all have different symptoms that come and go in different patterns from each other. No wonder the docs are confused, but it seems many of them are not clued in to how variable the symptoms can be from person to person.
Do you have copies of all the test results that were done on your daughter? I would suggest that you do so going forward, because sometimes a doc can look back over time and other test results and see patterns that are not obvious at the current time.
And, sorry to say, but many of the tests used for Lyme are not very good. The standard tests, ELISA and Western blot, are not very accurate, and if you have been infected for a while, as your daughter has, the tests very often show up negative, because the immune system just goes to sleep after a while and assumes that the infection must be gone. Unfortunately, that is one of Lyme's survival tricks, to hide in places in the body where the immune system can't see it.
And that hiding trick is another reason the tests are not very good: the usual tests don't look for the actual Lyme bacteria in the blood. Instead they look for the antibodies that your immune system makes against the bacteria. The immune system in humans is structured to assume it has killed all bacterial infections within a few weeks, so then the immune system stops making antibodies. Therefore the bacteria can still be there, but the immune system has stopped looking for them and stops reacting to them, so the bacteria hide and come out when the environment is safer for them. Most mainstream docs don't recognize this about Lyme infections, so they continue to rely on tests that are not very good.
Lyme can affect the brain and the whole neurological system quite strongly, but it does not do so in everyone. Those who get 'neuro Lyme' affecting the brain etc. can have dramatic symptoms, and it is possible that is what your daughter is exhibiting. Again, I am NOT medically trained and of course have never met your daughter, but these are some things you might consider.
I personally had deep fatigue and much anxiety, unable to sleep well, unable to concentrate. The test that Lyme specialists often do is called a SPECT scan, which looks at the brain, but in a different way than an MRI. These two tests are nothing alike, but only Lyme specialists tend to use the SPECT scan, which looks at blood flow (called perfusion) in the brain. When the brain swells, blood flow is slowed, and you can imagine the variety of symptoms that can cause. An MRI will not show blood flow.
[continued in following message pane]
From your comments, it sounds like you are aware that there is controversy in the medical community about Lyme, how widespread it is or isn't, what the symptoms are, and how to diagnose and treat it.
I am NOT medically trained, but I went through a very bad year looking for a diagnosis for myself, and 20 doctors later learned I had Lyme ... but the endocrinologist who ran the test that was positive for Lyme said I could not possibly have Lyme, because I wasn't sick enough ... and I was very ill. This was a very nice, very experienced and kindly doc who practices at a major medical institution, but like many in the medical field, she is not up to speed on the research that has been done in recent years and continues to develop now. It sounds like your daughter's docs may suffer from that same blind spot.
You are already aware that there are other diseases that often come along with Lyme, carried by the same ticks, and they have their own sets of varying symptoms, and each person also reacts differently to those infections, so that is one reason docs have a hard time seeing Lyme when it is right in front of them. You don't say what other infections your daughter was tested for, but I would be interested to know out of curiosity.
On top of different infections with different symptoms, the different combinations of infections show up differently in each person, I think because our immune systems all react differently. Just on this website and from people I know personally who have had Lyme, we all have different symptoms that come and go in different patterns from each other. No wonder the docs are confused, but it seems many of them are not clued in to how variable the symptoms can be from person to person.
Do you have copies of all the test results that were done on your daughter? I would suggest that you do so going forward, because sometimes a doc can look back over time and other test results and see patterns that are not obvious at the current time.
And, sorry to say, but many of the tests used for Lyme are not very good. The standard tests, ELISA and Western blot, are not very accurate, and if you have been infected for a while, as your daughter has, the tests very often show up negative, because the immune system just goes to sleep after a while and assumes that the infection must be gone. Unfortunately, that is one of Lyme's survival tricks, to hide in places in the body where the immune system can't see it.
And that hiding trick is another reason the tests are not very good: the usual tests don't look for the actual Lyme bacteria in the blood. Instead they look for the antibodies that your immune system makes against the bacteria. The immune system in humans is structured to assume it has killed all bacterial infections within a few weeks, so then the immune system stops making antibodies. Therefore the bacteria can still be there, but the immune system has stopped looking for them and stops reacting to them, so the bacteria hide and come out when the environment is safer for them. Most mainstream docs don't recognize this about Lyme infections, so they continue to rely on tests that are not very good.
Lyme can affect the brain and the whole neurological system quite strongly, but it does not do so in everyone. Those who get 'neuro Lyme' affecting the brain etc. can have dramatic symptoms, and it is possible that is what your daughter is exhibiting. Again, I am NOT medically trained and of course have never met your daughter, but these are some things you might consider.
I personally had deep fatigue and much anxiety, unable to sleep well, unable to concentrate. The test that Lyme specialists often do is called a SPECT scan, which looks at the brain, but in a different way than an MRI. These two tests are nothing alike, but only Lyme specialists tend to use the SPECT scan, which looks at blood flow (called perfusion) in the brain. When the brain swells, blood flow is slowed, and you can imagine the variety of symptoms that can cause. An MRI will not show blood flow.
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