posted
Two and a half years into treatment, and putting together the pieces of the puzzle. Had a seizure-like episode at age 20 and numerous other symptoms over the years, physical and psychological.
My sister has a positive IGENEX, she too has had numerous symptoms for decades.
My mom started having seizures at age 25, before she gave birth to us. She had severe psych symptoms her entire life. She was very sick as a young girl with an unknown ailment.
My mother comes from Maine, where I presume there were plentiful deer even back in the '40's and '50's. I and my siblings were born and raised in CT, living in areas that today have alot of deer but back in the '50's there were few or none.
I believe my mother may have had tick-borne illness which she passed on to us congenitally.
Anyone here feel they or family members have been infected with TBD going back to the 40's and '50's? This of course predates the discovery of Lyme Disease in CT in the 70's. To my mind, there have always been deer ticks, and why should we assume that until the late 70's, ticks weren't transmitting ANYTHING when they bit humans? Growing up, we always lived in areas that one would consider prime tick habitats.
Also of interest, my brother was diagnosed with ringworm at about age 8. This is interesting because my secondary Lyme rash of two years ago was misdiagnosed initially as ringworm.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry to hear about your family.
Borrelia B was found in a tick in a museum from the 1800's. Don't remember the exact specifics but I think it is mentioned in Buhner's book.
I was infected in 1959 while living on my grandfaters ranch in Eastern Oregon. Lots of ticks there and I remember the embedded tick and getting sick after that.
The first round of illness caused very painful joints, bladder pain and frequency, insomnia, nightmares, headaches, terrible depression, air hunger, weakness etc. From then on I was very ill at times but would have remissions that lasted sometimes years.
All of my siblings and my mother are sick. 3 of 5 from the next generation are sick too.
Oh yeah, we all had ringworm but that was years after the initial infection.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I got Lyme in Ohio in the early 70's - 1973. That's about the same time that it was being discovered in CT.
That strain that I was exposed to repeatedly with dozens of tick bites was manageable. Yes, it made me sick and made it so I had fibromyalgia and CFS very badly. There was a time in college I only got out of bed to go to class. There were two times I couldn't work.
But, I got so I knew what supps I could take and to rest/exercise/eat right so I felt pretty good. When I had my amalgams out in 1991 and chelated, as long as I got enough rest and wasn't too stressed, I didn't have symptoms until my new bite back in about 2002. That was a whole different story!!!
Dr. H in Under Our Skin even talks about how the people today are much sicker than the people he treated before. He has told me personally what Terry is saying, that it's been around for a long time and was not new in the 70's.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Terry: Thanks for the info. I too had many of the symptoms you did as a child, including air hunger, insomnia, sudden bladder urges. This was back in the 1950's. I was so anxiety-ridden, I just kept the symptoms to myself.
Do you feel, as I do, that all the "ringworm" rashes were really secondary Lyme rashes? My rash of 2 years ago was diagnosed as ringworm by a walk-in clinic - just visually, no biopsy. After researching Lyme, I realized it was a secondary rash of chronic Lyme and not ringworm.
I BLASTED my PCP and the Director of the hospital for misdiagnosing a Lyme rash (sent pix of the rash). I actually got a phone call from the
Director of the hospital apologizing. My PCP finally conceded that it had to be Lyme, altho I had to drag him kicking and screaming to this conclusion.
sixgoofykids: Thanks for sharing your experience. At what point did you put the pieces of the puzzle together and realize you had TBD since early 70's? I'll bet it was a real AHA! moment, an epiphany. That's what I'm having now, as I come to believe my whole family has this disease and has had it for decades, with possible congenital transmission from my mother.
Now I'm wondering if my brother's "ringworm" at age 8, back in the 1950's, was really Lyme.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
When I was bedridden/housebound and my doctor diagnosed me with Somatization Disorder, I did my own research and discovered Lyme Disease. I had my doctor test me and had 8 positive IgG bands, yet she stood by her psych diagnosis. That was in Dec. 2006.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hi all! It's been a long time since I posted but I read every so often. I had to jump in on this one.
YES! I've had this disease for 50 years. I was infected in Nebraska as a child. I had tick bites almost daily in the warm months as I played outside constantly. It was not considered a big deal and the ticks were pulled off the wrong way.
I have had numerous health issues over the years until I was finally mostly bedridden a few years ago. Finally I was tested and started treatment in 2006. I am no longer bedbound but I still have problems, mostly with fatigue and brain issues.
I stopped antibiotics over a year ago and now am on homeopathics and herbs. There's always hope no matter how long one has had this disease.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Paul, I've read that some get multiple EM rashes that can be associated with a tick bite or can manifest with treatment of borrelia but since 4 of us got them at the same time long after the initial bite it seems unlikely to be related to lyme in my opinion.
I did get something that looked like ringworm on my arm when I was in my 20's and the doctor couldn't figure out what it was.
Glad the puzzle is coming together for you and your family. No one in my family is being treated except for me.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I believe that I have congenital bartonella, and I was born in the 60's. However, I don't know if my older siblings are sick from lyme or other things.
My parents had severe social anxiety, which looks like the worst of my bartonella.
I wish there were alive to treat. They both died of cancer of the pancreas, and both long before my diagnosis.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
Terry, I'll bet the rash you had when you were in your 20's was a secondary Lyme rash. I should have mentioned that after I started treatment 2 1/2 years ago, I would periodically break out in huge multiple ringworm-type rashes with expanding borders that would disappear on their own, thus confirming that the original rash was not ringworm. Last one was Jan. of this year.
I am meeting people all the time who have symptoms that scream LYME, and then they mention they had a rash which a doctor said was ringworm.
I have a cousin who I'm certain has chronic Lyme that has invaded his brain bigtime. He is convinced the mafia are out to kill him. Won't leave the house, boarding up all the doors and windows,
paranoid up the wazoo. Then he tells me he woke up one morning and found a rash on his arm in the shape of a letter "C". He was convinced that the mafia gave it to him in the middle of the night. Then he said he went to a doc who told him it was ringworm. arghhhhhhhhhhhhh BTW, this cousin was diagnosed and treated for acute Lyme a few years ago, is positive he was cured. double arghhhhh
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
Peacemama, tell me more about your Bartonella symptoms. It's the one coinfection I haven't tested positive for. What were the symptoms? Is Bartonella known to cause psych issues?
Also, is there a distinctive Bartonella skin manifestation that looks like purple stretch marks? I had those as a child on my hips. They faded away after years.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
My grandmother just passed away at (almost!!) 78yrs old, from what we believe to have been a complication of Lyme. My mother and I believe she was infected with Lyme and Co. since at least early childhood and quite possibly congenitally (as we were). That would put us around 80yr. Quite a number of descendants in 5 generations, as you would expect. Most, if not all, have highly suspicious medical histories.
Posts: 155 | From Texas | Registered: Oct 2007
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-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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That's very interesting that you should mention your sister, your mom and you all have the symptoms, and your mom is from Maine. That sounds like a duplicate story of my wife.
Her mom was from Maine and She had MS for years before she died. And now both my wife and her brother have the similar symptoms like their mom. and Both are recently diagnosed to have Lyme and a bunch of co-infections.
What a co-incident. Or probably not.
What are the main symptoms you have and are you making any progress with Lyme treatment?
I am very curious.
Posts: 822 | From midwest | Registered: Apr 2009
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My mom, in addition to the seizures and severe psych. symptoms, developed early dementia, and finally parkinsons before she died. Toward the end, neurosurgeon said MRI showed something going on in her brain.
My symptoms were arthritic, neurological, psychiatric, cardiac, and visual. Had first panic attack at age 6. Lifelong depression, anxiety, panic, social phobia, and obsessions. Evntually became alcoholic, quit booze 26 years ago. recent years had symptoms suggestive of MS: ataxia, numbness, twitching, cramping, severe constipation, and incontinence.
Diagnosed myself and got it confirmed by ILADS doc and IGENEX Western Blot.
2 1/2 years into treatment with multiple hi-dose antibiotics and supplements, I am improving. Getting stronger, less fatigue, going to the gym once or twice a week. 2 years ago I thought I was dying. Still have some neuropathy, balance issues, vision issues.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I believe my parents got Lyme about the same time I did. My father died of Parkinson's before I was diagnosed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
yes
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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jackie51
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Member # 14233
posted
I've had headaches since I was a kid. In my 20's I had bleeding gums, cluster headaches, right side numbing and tingling, legs, arms, face. Late 20's, early 30's had Raynaud's syndrome. 30's had miscarriages. 30's & 40's had multiple ear infections, bronchitis, sinus infections, headaches, fatigue. Mid to late 40's it became crushing fatigue,neck pain, shin pain, major weight gain, reflux, sleep apnea, sore feet, temporal arteritis, frustration (depression). I have had about 10 to 12 root canals and have probably 12 caps in the last 30 years.
Now...after all that, I've been treated on and off for 4 - 4-1/2 years. Occasionally now I get fatigue if I do too much, maybe a headache that goes away with 1-2 tylenol. I can function the whole day.
Amazingly, I have no other health problems. No diabetes (runs in family), low blood pressure, no cholesterol issues. I don't even have arthritis, which supposedly runs in the family.
I am starting to wonder if I've given something to my kidss. I hope not.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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We need to seriously talk to each other and compare the notes. Every symptom you mentioned is exactly what we have been dealing with. Is this some kind of a special strain of infection agents we are dealing with?
A few of the symptoms that jumped right out are:
early dementia "something" on the brain neurological ataxia MS vision issue obsession
I am sure these are "typical" Lyme symptoms, but the combo of these seem to me quite unusual.
I think her family came from Portland area but I have to check with her later tonight. And a few more serious illnesses that her mother's siblings are known to have are:
epilepsy Alcoholic/substance abuse Lupus Schizophrenia MS (Alzheimer's, mindlessness...)
Not that many families I know to have so many devastating illnesses...
Posts: 822 | From midwest | Registered: Apr 2009
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posted
wtl: My mom was from Lewiston, Maine. Her sister also suffered from mental illness throughout her adult life.
I am about to have a discussion with my brother about my belief that we all have this godawful disease. I don't just think it, I KNOW it. All the pieces of the puzzle now fit together.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I was diagnosed about 3 years ago. It finally explained why my whole childhood was ruined. I've had it about 40 years. One of the things that Lyme does is it will take diseases in you that are dormant and reactivate them. I am the only living person in history (I believe it still holds true) that has survived mononucleosis 5 times. I had it 6 times for 8 years stuck completely in bed. I had most of my schooling in bed as well. Like Lyme, most doctors know nothing about it. You get a cell that splits and decides to become mono or leukemia. I also suffered from stomach disorders from age 7 as well as all the joint pains and much more. I'm now happy to know what has been wrong with me so that I can and will defeat this thing.
-------------------- Never Give Up! Never Surrender! Posts: 9 | From NC | Registered: Dec 2010
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Interesting. Lewiston is a 35-mile distance from Portland. hum...I am wondering now what goes on in that stretch of land in between.
Good luck with the discussion with your brother. It'd be interesting to know what he says...
Posts: 822 | From midwest | Registered: Apr 2009
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I have been infected since the late 50's/early 60's and I lived in OK
I was told I had "ringworm" at the beginning of my first pregnancy. I also had a similar rash right before my health hit bottom in 2001.
I believe that both times it was really Lyme. I believe I passed it on to all three of my adult kids.
One has Bipolar Disorder and an obvious Bart rash on his torso. The other two have had differing symptoms over the years.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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canefan17
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posted
I KNOW my mom has it and gave it to me and my 2 brothers.
My older brother is sick all the time (wiped out adrenals - panic attacks - etc)
My younger brother has more physical symptoms - hair loss at age 22 - restless leg sydrome - etc etc
My mother has it all! lol Physical symptoms, mood swings, adrenal fatigue, etc etc
I tell my mom all the time that I'm worried about my 2 brothers. I don't believe their entire systems have collapsed (as mine did)
I think they are in the early stages.
In my experience I know now that my immune system seemingly held Lyme off for many years while I had only minor early signs (knee swollen, etc)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
BTW, I forgot to mention I had Raynaud's phenomenon for a few years, as well as restless legs syndrome. At the time, I assumed it was a side-effect of some meds I was taking. I now know it was Lyme, and that the meds only allowed the symptoms to reach a "tipping point".
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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TerryK
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posted
Anyone with lyme in their family for 40+ years - are your chidren sick? How about your children's children?
All of my siblings are sick, one just died after being bedridden and in horrific pain for 10 years. She had a diagnosis of "fibromyalgia". Her daughter and her daughters daughter are sick. My other sister is sick, her daugher is sick and her son has autism. Her daughters daughter is also sick. My daughter is not sick and my sisters son is not sick. So, out of all the kids and grandkids, 2 are not sick yet no one is on ANY kind of treatment except me!
I just wonder how many other families are sick like this?
edited to add My brother is sick (very sick) and while his son is not terribly physically ill (yet) he has major psychological problems and brain fog that comes and goes and is profound at times. Don't know if his symptoms are lyme related or not. His mother had psychological problems. Terry
That is an astounding number of sick people for one family. Does everyone have similar symptoms, or differing mixtures of arthrit., neuro, psych. symptoms?
Did you test positive for Lyme on any test?
Did you experience a herxeimer reaction from treatment?
And most importantly, do you feel you are improving? Or too soon to tell?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Boy, this is an interesting thread...
I didn't read it all so I hope I'm not duplicating info.
Paulie asked about Bart symptoms and purple stretch marks.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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TerryK
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posted
Paulie asked: Does everyone have similar symptoms, or differing mixtures of arthrit., neuro, psych. symptoms?
From what I can tell, most of us have common symptoms but not all of us have all the exact same symptoms. I'm not sure about the youngest who is 5 years old. Her mother told me a few days ago that she continues to be sick but I haven't asked all the important questions yet. I know her immune system is depressed and she is sick a lot. I've been through that myself.
Some of the main common symptoms are severe fatigue, sleep difficulty, depression, pain (overall body pain, muscle and joint pain etc..), fluid retention. Many of us have dysautonomia (low blood pressure, high pulse, low body temperature. difficulty controlling body temperature, orthostatic hypotension). Quite a number have ADHD, some have been diagnosed with bipolar a few seem to have OCD almost all of us have anxiety.
My mother has been diagnosed with atypical sarcoidosis (this looks like it has been connected to lyme but some say no). She and I have had a very similar symptom list for years. Seems like the sicker one is, the more symptoms we have in common.
I found out a few years ago that my brother has had at least 3 bullseye rashes. He didn't know what they meant.
My nephew with autism has been on low dose doxy for a long time. His mother was on it for years. They are both better than the rest of us. The only reason I would even include my nephew with autism is because autism has been connected with lyme. I figure he has lyme induced autism but I'm not sure because he doesn't have the terrible pain and some of the other common symptoms. That said, he has been on abx for a long time.
Paulie asked: Did you test positive for Lyme on any test?
Yes, IGenex IgG and IgM positive. Also my LLMD ran some specialized babesia tests through a co,pany that no longer does the testing and he said that test was positive for babesia.
The bart rash that I had was bart without a doubt according to my LLMD despite the fact that I tested negative for bart. The long purple streaks finally disappeared after a year of treatment which seems to verify that it was bart.
No one else has tested positive for lyme but not everyone has been tested and those who have been tested have had inadequate testing (wrong labs except 2 people and no abx challenge). Both of my sisters had one significant band as far as I can remember. My brother was tested by the VA (veterans administration). His ELISA was indeterminate (same as mine) and they declined to do further testing. None have had testing for co-infections except for my deceased sister's tissues.
I had some of my deceased sisters tissues tested for borrelia and bart via PCR. Not a very sensitive test. To my utter surprise the results were negative! I think we likely have a strain of bart that is not tested for.
Paulie asked: Did you experience a herxeimer reaction from treatment?
A big YES! I was already very ill when I started treatment which makes it harder to tell what is happening but I seemed to herx straight for 2 years! It's much easier to tell what's going on now that I actually have times when I feel better. My sister's death seemed to be brought on by antibiotics she was taking for a sinus infection. It was either a herx or porphyria with 3 different abx in a row.
Paulie asked: And most importantly, do you feel you are improving? Or too soon to tell?
I am sooooo much better than I was but I have a long way to go. I have a huge list of symptoms that are greatly improved, some are gone for the most part. Still a lot of fatigue. I will likely go on IV abx this year. It has taken years to get back to this point. I felt that I was on deaths door when I started treatment and I firmly believe that I was.
I look back on how sick I was with a shudder. I know my brother and one of my nieces are as sick as I was and I am fearful that they will die of this illness and sooner rather than later.
posted
17hens: Thanks for the bartonella info. My rash as a young boy, did look similar to that. My sister had similar on her arm.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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