ok - i am going to cautiously accept this news as GOOD - Colin is not exhibiting any symptoms and appears to be in great health - and with an acknowledgment of the unreliability of the testing that is currently out there- with that one small caveat - i am going to say with some measure of assuredness that COLIN DOES NOT HAVE LYME DISEASE !
I need to go over the tests with his Pediatrician when she returns from vacation and i will keep a watchful eye on him , nonetheless , but the preliminary word is that he is negative for Borrelia Burgdorferi . I pray it stays that way FOREVER. I never want him to go through what his father and i are enduring. He is so pure and sweet and full of life and i just need him to stay that way for as long as is humanly possible. Isn't that every mother's dream ?
I want to cry tears of relief and joy but i have to be honest i am afraid of jinxing it.
When i am at my wit's end i tend toward superstition . ( salt over shoulder , three hail mary's )
i just want him to be ok.
I have to remember to stay in the present moment and accept what IS.
My baby boy is ok, right here, right now.
ok, breathe.
Thanks to everyone out there waiting with held breath, too.
i really appreciate all of your love and support these days.
It helps me get through . It really does.
Friday, March 27, 2009
Wednesday, March 25, 2009
Cold Feet, Cold Heart
I had a really bad day today.
It was an 'off" day in more ways than one.
To start with ( no offense PC people) i had to write this post on a PC.
After many years a Mac afficianado , i hate trying to figure out a PC ( and with Lyme Brain - which remembers nothing ) especially late at night and after the hot water runs out when i am trying to fill my bath !
Uggh. A perfect ending to a rotton day.
MY hubs , donned in a white Hazmat suit , goggles and respirator ( i kid you not - i took pictures to be posted later) sprayed the yard and environs with toxic chemicals today to kill the ticks that have been breeding in our yard since last summer. It literally hurt my heart.
Anyone that knows me can attest to the fact that i am a strictly Organic girl.
i believe in the Diversity of Life .
Lyme Disease has changed that one simple credo , forever.
Ticks no longer fit into my scheme of things. I fear and loathe them.
I tried to choose the least harmful and bio-degradable perethin based insecticide to keep the
carnage to the rest of Nature's bounty to a minimum but it still killed a little part of me along with the
creepy arthropods . It stung like a bee' s sting.
It was either that or never step foot in my garden , watch Colin run naked through the flowers with abandon , or let Nooni play hide and seek with the squirrels that live in our Linden tree. I chose the poison pill.
My heart felt poisoned all day as a result.
There is a lot of stress to keep at bay these days.
LD also makes one prone to irritability and emotional outbursts and they were all on board today , too.
It made for a tough day all around.
But as they say -
Tomorrow is another day....
It was an 'off" day in more ways than one.
To start with ( no offense PC people) i had to write this post on a PC.
After many years a Mac afficianado , i hate trying to figure out a PC ( and with Lyme Brain - which remembers nothing ) especially late at night and after the hot water runs out when i am trying to fill my bath !
Uggh. A perfect ending to a rotton day.
MY hubs , donned in a white Hazmat suit , goggles and respirator ( i kid you not - i took pictures to be posted later) sprayed the yard and environs with toxic chemicals today to kill the ticks that have been breeding in our yard since last summer. It literally hurt my heart.
Anyone that knows me can attest to the fact that i am a strictly Organic girl.
i believe in the Diversity of Life .
Lyme Disease has changed that one simple credo , forever.
Ticks no longer fit into my scheme of things. I fear and loathe them.
I tried to choose the least harmful and bio-degradable perethin based insecticide to keep the
carnage to the rest of Nature's bounty to a minimum but it still killed a little part of me along with the
creepy arthropods . It stung like a bee' s sting.
It was either that or never step foot in my garden , watch Colin run naked through the flowers with abandon , or let Nooni play hide and seek with the squirrels that live in our Linden tree. I chose the poison pill.
My heart felt poisoned all day as a result.
There is a lot of stress to keep at bay these days.
LD also makes one prone to irritability and emotional outbursts and they were all on board today , too.
It made for a tough day all around.
But as they say -
Tomorrow is another day....
Monday, March 23, 2009
Checking my Pulse
My LLMD is trying something called "pulsing" with my new anti-biotic therapy . I am a couple days on - one day off, with the theory being give the Borrelia & Co. a chance to come out of hiding little by little and pick them off that way. Otherwise , after being on anti-biotics for so long the buggers get wise and see you as 'hostile territory and encyst or hide in your tissues ( harder to target with meds. ) until the coast is clear.
That is why a lot of Lymie's feel good on meds and once off start to go downhill again.
So , the idea is no abx for a few days - then you beef up on Magnesium , which they feed on and hope that they want to play hide and seek and then BLAM ! your meds can do their job , destroying them more efficiently. It works for some people and since i was at a standstill with lots of bad stuff going on we are trying it.
Today is an 'off' day and after a day of feeling very few symptoms - they are back in FULL force. I have been extremely fatigued since noon and my lower extremities are tingly and cold. Both eyes are doing the cha-cha today and i have joint pain in my hands and shoulders . My neck is stiff and i am spacey and irritable.
I think it is working ;(~
- though it is really too early to tell - i have only been on this new protocol since Friday but i had a great day Saturday and Sunday while i was taking my new anti-bios and supplements. I have to journal daily and keep track of any changes and at the end of the month we will know more.
I still have a lot of tests out there and still some unanswered questions so it is far from 'set' but i am looking for any sign that SOMETHING is working . I need to know that there is a light at the end of this
very long , very dark tunnel .
I think i see a spark of light off in the distance but it could just be my optical neuritis getting the best of me. It's hard to tell when you have LD . It comes and goes.
Just like my mood these days.
i remain optimistic , regardless.
That is why a lot of Lymie's feel good on meds and once off start to go downhill again.
So , the idea is no abx for a few days - then you beef up on Magnesium , which they feed on and hope that they want to play hide and seek and then BLAM ! your meds can do their job , destroying them more efficiently. It works for some people and since i was at a standstill with lots of bad stuff going on we are trying it.
Today is an 'off' day and after a day of feeling very few symptoms - they are back in FULL force. I have been extremely fatigued since noon and my lower extremities are tingly and cold. Both eyes are doing the cha-cha today and i have joint pain in my hands and shoulders . My neck is stiff and i am spacey and irritable.
I think it is working ;(~
- though it is really too early to tell - i have only been on this new protocol since Friday but i had a great day Saturday and Sunday while i was taking my new anti-bios and supplements. I have to journal daily and keep track of any changes and at the end of the month we will know more.
I still have a lot of tests out there and still some unanswered questions so it is far from 'set' but i am looking for any sign that SOMETHING is working . I need to know that there is a light at the end of this
very long , very dark tunnel .
I think i see a spark of light off in the distance but it could just be my optical neuritis getting the best of me. It's hard to tell when you have LD . It comes and goes.
Just like my mood these days.
i remain optimistic , regardless.
Thursday, March 19, 2009
Hope is a thing with feathers...
Today was my appointment with a LLMD.
That's Lyme Literate Medical Doctor to the uninitiated . What exactly is an LLMD ?
It means a brave , caring MD who has decided to go against mainstream politics and help sick people who aren't being helped. They are few and far between and NOT easy to find nor get an appointment with . They are overflowing with desperate men, women and children who need their compassion and even more importantly , their medical advice and treatment for a disease BIG MEDICINE has turned its back on.
They are pioneers and scientists and detectives and THEY are interested not in Lyme Disease as phenomenon but in helping Lyme Disease patients get better.
That was the rumor , anyway.
After much research , run-around and not a small bit of sly detective work ( big pat on back to yours truly and an even BIGGER thank you to all of the kind souls who shared information with me )- i arrived at a name.
Along with the name came rave reviews so i took a chance and called. And called . Kept calling.
A LIVE BODY ! A conversation ensued - "not currently accepting new patients - check back in May "
Another call - begging pleading crying- got the doctor's wife on the phone - BINGO ! A heartbeat !
"I'll see what i can do - no promises- but i will try " That's all i wanted . Someone to try for me.
I got a call back AND an appointment.
That was today . I was nervous and i was just the least bit hopeful - but by this time i was a bit jaded , too.
I pretty much trust no one on this subject. There is no ONE answer and i am wary of anyone who claims there is. I am living proof .
Well , i got answers but no easy answer.
There is no miracle cure for disseminated Lyme Disease. I kind of already knew that but i was hoping for a 'miracle' . Who doesn't when they or someone they love is ill ?
There are different experimental protocols ( aren't they all , really ? ) and no one protocol fits everyone.
After 2 and 1/2 hours of rigorous Q & A - i finally felt heard and validated. My GP is caring and she tried but she couldn't get anyone to advise her outside of " 28 days of Doxycycline" . That didn't work for me .
I got worse. Her hands were tied. She was frustrated and I was left feeling like i was quickly reaching a dead end.
This LLMD unshackled my hope. They will now work together to get me (us) well.
More testing , more wait and see, but a new , more holistic approach with new anti-biotics - in a different combination . Who knows if it will help ?
I just know i am willing to try something new that approaches the disease in a comprehensive and directed way- one that works with my body and not against it.
That means diet changes, supplements , drugs and patience.
I have it all on board except the latter - THAT i will have to work on .
It is a start , though.
Begin at the Beginning ...
That's Lyme Literate Medical Doctor to the uninitiated . What exactly is an LLMD ?
It means a brave , caring MD who has decided to go against mainstream politics and help sick people who aren't being helped. They are few and far between and NOT easy to find nor get an appointment with . They are overflowing with desperate men, women and children who need their compassion and even more importantly , their medical advice and treatment for a disease BIG MEDICINE has turned its back on.
They are pioneers and scientists and detectives and THEY are interested not in Lyme Disease as phenomenon but in helping Lyme Disease patients get better.
That was the rumor , anyway.
After much research , run-around and not a small bit of sly detective work ( big pat on back to yours truly and an even BIGGER thank you to all of the kind souls who shared information with me )- i arrived at a name.
Along with the name came rave reviews so i took a chance and called. And called . Kept calling.
A LIVE BODY ! A conversation ensued - "not currently accepting new patients - check back in May "
Another call - begging pleading crying- got the doctor's wife on the phone - BINGO ! A heartbeat !
"I'll see what i can do - no promises- but i will try " That's all i wanted . Someone to try for me.
I got a call back AND an appointment.
That was today . I was nervous and i was just the least bit hopeful - but by this time i was a bit jaded , too.
I pretty much trust no one on this subject. There is no ONE answer and i am wary of anyone who claims there is. I am living proof .
Well , i got answers but no easy answer.
There is no miracle cure for disseminated Lyme Disease. I kind of already knew that but i was hoping for a 'miracle' . Who doesn't when they or someone they love is ill ?
There are different experimental protocols ( aren't they all , really ? ) and no one protocol fits everyone.
After 2 and 1/2 hours of rigorous Q & A - i finally felt heard and validated. My GP is caring and she tried but she couldn't get anyone to advise her outside of " 28 days of Doxycycline" . That didn't work for me .
I got worse. Her hands were tied. She was frustrated and I was left feeling like i was quickly reaching a dead end.
This LLMD unshackled my hope. They will now work together to get me (us) well.
More testing , more wait and see, but a new , more holistic approach with new anti-biotics - in a different combination . Who knows if it will help ?
I just know i am willing to try something new that approaches the disease in a comprehensive and directed way- one that works with my body and not against it.
That means diet changes, supplements , drugs and patience.
I have it all on board except the latter - THAT i will have to work on .
It is a start , though.
Begin at the Beginning ...
Wednesday, March 18, 2009
Tuesday, March 17, 2009
And then there were Two...
My husband who also had mysterious ailments throughout last year was tested for Lyme per my Drs. recommendation and Voila ! both his tests ( ELISA & Western Blot ) came back highly positive for Lyme.
We had a stone walk and wall put in last summer and i recalled pulling a tick from his scalp behind his ear .He had been to the stone quarry earlier in the day and remarked that it was 'loaded with ticks' .
He woke me in the middle of the night sensing something crawling in his hair. I found two ticks crawling and another already embedded deep in his skin. I never felt my tick bite - never saw it coming. I don't know why that bugs me but it does.
I pride myself on being an 'aware' person. I don't like the idea of something so creepy being able to sneak up on me.
I remember at the time of my husband's tick bite quoting my then 'official' knowledge " Relax , hon - it has to be embedded for 48 hours before it can do any harm. We'll watch for the bulls-eye , anyway you are fine if you don't have it.
I rue that day now.
It turns out ( regardless that the NIH & CDC and IDSA still tow the old line) there is new evidence ( scientific lab-based studies AND documented patient histories) that anytime a tick starts to feed transmission of tick-borne disease can occur . It turns out that in reality , only about 50% of people ever get what is termed as a classic bulls-eye rash. If Lyme Disease is not caught in the first few weeks ( maybe less depending on the individual) BEFORE the bacteria disseminates through the body , then a standard 'cure' of 10-28 days of doxycycline is likely not to reach all of the bacteria. You have a VERY good chance of staying ill or relapsing if that is the case.
If the Lyme bacteria ( Borrelia Burgdorfii) has entered your central nervous system or other tissues and organs the doxycycline will be unable to reach it all.
Now considering that Lyme Disease is caused by a Spirochete similar but actually quite a bit more complex than syphilis and syphilis is routinely and aggresively treated for months- doesn't it cause one to pause and wonder why , when people continue to exhibit the SAME symptoms after a short course of treatment , they are still sick if 28 days of Doxycline is such a sure cure ? I have read in some studies that unless you maintain blood levels of 400-600 mgs of doxycycline , borrelia will survive. Yet , the standard - what i am on right now - is only 100 mg twice a day. My husband is on the same . Why is this the standard ?
I am in my third week and no better than when i started. I fear i am going to be one of those people who gets lost in the Lymelands of medical controversy and policy.
This is why after an exhaustive search i am going to see a specialist who TREATS Lyme Disease UNTIL they get better . I have had this for more that six months and only diagnosed in the last few weeks - i am not willing to take a "wait and see" approach with my health. Sorry.
Yes,it is true - some people get better easily - IF caught early .
Most late diagnoses are not so simply cured- regardless what the NIH & IDSA would like you to believe.
There are THOUSANDS of sick children and adults to attest to that fact.
The powers that be would have you believe they are all under some mass delusion or have " Post-Lyme " which is an unexplained set of symptoms present after the bacteria no longer exists in the body. You guessed it - there is NO treatment for it. Chronic Lyme simply does not exist according to these 'experts'.
Inconvenient for them that there is a growing body of evidence to the contrary. Now if somebody would do something about it that would be great.
To be fair there are a number of brilliant scientists and doctors without a personal agenda who are willing to take on the status quo and the current mainstream view towards Lyme DIsease. They are more concerned with human suffering and healing than prestige, power and the almighty dollar.
Unfortunately there is a great deal of pressue out there to " tow the party line' as more people continue to be ill . I can only hope and pray that this changes soon . People have a right to know and to be provided proper health care .
This is but one very important issue in the National Health Crisis .
It has hit home for me and my family.
i for one , will fight as long as i can and as hard as i can until someone listens. Lyme Disease is NOT going away . And yes, you SHOULD be afraid.
Be VERY afraid.
Please read my first post "ticker tape parade for my story of discovery.
see links on sidebar for more info on Lyme Disease.
To be fair -go to the CDC and NIH, IDSA sites and see how vague and concise they are about an illness that is agreed by everyone concerned to be 'complex'. Then talk to people who have it.
Who do you believe ?
We had a stone walk and wall put in last summer and i recalled pulling a tick from his scalp behind his ear .He had been to the stone quarry earlier in the day and remarked that it was 'loaded with ticks' .
He woke me in the middle of the night sensing something crawling in his hair. I found two ticks crawling and another already embedded deep in his skin. I never felt my tick bite - never saw it coming. I don't know why that bugs me but it does.
I pride myself on being an 'aware' person. I don't like the idea of something so creepy being able to sneak up on me.
I remember at the time of my husband's tick bite quoting my then 'official' knowledge " Relax , hon - it has to be embedded for 48 hours before it can do any harm. We'll watch for the bulls-eye , anyway you are fine if you don't have it.
I rue that day now.
It turns out ( regardless that the NIH & CDC and IDSA still tow the old line) there is new evidence ( scientific lab-based studies AND documented patient histories) that anytime a tick starts to feed transmission of tick-borne disease can occur . It turns out that in reality , only about 50% of people ever get what is termed as a classic bulls-eye rash. If Lyme Disease is not caught in the first few weeks ( maybe less depending on the individual) BEFORE the bacteria disseminates through the body , then a standard 'cure' of 10-28 days of doxycycline is likely not to reach all of the bacteria. You have a VERY good chance of staying ill or relapsing if that is the case.
If the Lyme bacteria ( Borrelia Burgdorfii) has entered your central nervous system or other tissues and organs the doxycycline will be unable to reach it all.
Now considering that Lyme Disease is caused by a Spirochete similar but actually quite a bit more complex than syphilis and syphilis is routinely and aggresively treated for months- doesn't it cause one to pause and wonder why , when people continue to exhibit the SAME symptoms after a short course of treatment , they are still sick if 28 days of Doxycline is such a sure cure ? I have read in some studies that unless you maintain blood levels of 400-600 mgs of doxycycline , borrelia will survive. Yet , the standard - what i am on right now - is only 100 mg twice a day. My husband is on the same . Why is this the standard ?
I am in my third week and no better than when i started. I fear i am going to be one of those people who gets lost in the Lymelands of medical controversy and policy.
This is why after an exhaustive search i am going to see a specialist who TREATS Lyme Disease UNTIL they get better . I have had this for more that six months and only diagnosed in the last few weeks - i am not willing to take a "wait and see" approach with my health. Sorry.
Yes,it is true - some people get better easily - IF caught early .
Most late diagnoses are not so simply cured- regardless what the NIH & IDSA would like you to believe.
There are THOUSANDS of sick children and adults to attest to that fact.
The powers that be would have you believe they are all under some mass delusion or have " Post-Lyme " which is an unexplained set of symptoms present after the bacteria no longer exists in the body. You guessed it - there is NO treatment for it. Chronic Lyme simply does not exist according to these 'experts'.
Inconvenient for them that there is a growing body of evidence to the contrary. Now if somebody would do something about it that would be great.
To be fair there are a number of brilliant scientists and doctors without a personal agenda who are willing to take on the status quo and the current mainstream view towards Lyme DIsease. They are more concerned with human suffering and healing than prestige, power and the almighty dollar.
Unfortunately there is a great deal of pressue out there to " tow the party line' as more people continue to be ill . I can only hope and pray that this changes soon . People have a right to know and to be provided proper health care .
This is but one very important issue in the National Health Crisis .
It has hit home for me and my family.
i for one , will fight as long as i can and as hard as i can until someone listens. Lyme Disease is NOT going away . And yes, you SHOULD be afraid.
Be VERY afraid.
Please read my first post "ticker tape parade for my story of discovery.
see links on sidebar for more info on Lyme Disease.
To be fair -go to the CDC and NIH, IDSA sites and see how vague and concise they are about an illness that is agreed by everyone concerned to be 'complex'. Then talk to people who have it.
Who do you believe ?
Ticker Tape Parade
It all started with an 'allergy' attack before leaving for a trip up North to visit friends in N.Y. and my folks in Western Ma. I had sneezing fits to beat the band . I thought the air filter in the HVAC needed to be changed . It was early October.
We traveled to W. Ma. first to spend time with my family and stayed at the Lord Jeffrey Inn in Amherst. The foliage was peaking and gorgeous and we strolled around town enjoying the quaint New England scenery. It was warm enough for bees to be out although in the morning a band of bumblebees on the asters in front of our Inn stood frozen in time from the frost laden dawn. I felt somewhat frozen , too as my allergies turned into a head cold . I was achy and tired but thought nothing of it.
We arrived a few days later in New Jersey to stay with friends . My head cold turned into a full blown flu and we cut our trip short to head home.
I did all of my normal holistic healing tricks ( vitamin C , raw honey, zinc, nasal washing , probiotics, chicken soup ) but instead of feeling better in a few days , my nose completely shut down , no air , no sense of smell or taste and i had a raging ache in my head , jaw and face. My neck was so stiff i could barely turn it.
After a month of illness i gave up and went to my GP. She diagnosed an acute sinus infection ( something i have never had before ) and put me on an antibiotic . It barely made a dent but by the end of the week i felt some relief so i thought it was on the way out. A few days later it roared back stronger than ever and i started feeling dizzy.Back to the Doc. She put me a stronger anti-biotic Levaquin which came with a short novella of warnings and side effects from the pharmacy. I was desperate and i took it .
That night i had wildly violent and bizarre dreams . I woke up profusely sweating and felt all tingly . I blamed the Levaquin but since i wasn't dying i kept taking it.
I continued to feel dizzy , tingly and nauseous but i soldiered on . Some of these were listed side-effects afte rall . Nothing to be concerned about right ?
By the end of the Levaquin i could feel the sinus infection lifting but my ears started ringing , felt painful and my hearing was muted- like i was perpetually underwater.
I decided to go see an Ear Nose And Throat specialist and see what was going on.
I was vacuumed and examined and given another course of antibiotics - this time Amoxicillin. She suggested i see an allergist .
My sinus infection finally cleared up - not gone exactly but much better so that i could function fairly normally and the bizarre buzzing and tingling abated. My ears felt better , too. I had a battery of allergy tests and the results were " a slight allergy to house dust and mold " Nothing out of the ordinary.
A few weeks went by and i started running again , something i had let slip due to not feeling well . When i got back from my first run i felt good but when i looked in the mirror i was shocked. My face was all red and puffy like i had been skiiing in below freezing temps ! I passed it off as wind-burn ( something else i have never had except in the above scenario) .It lasted for the day then faded. Strange.
The next time i went for a run my hip felt on fire . I had been getting that same feeling in September and attributed it to an ITB injury. I must be getting old, i thought.
This time it didn't go away but persisted anytime i tried to exercise .
Even when i did yoga . That was really strange.Then it went away as mysteriously as it had appeared.
After two weeks of feeling 'well' i ended up having the same old probems with my sinus , ears and frequent headaches along with bone-crushing fatigue.
Now i was confused. Usually when i took good care of myself , got lots of rest , ate a healthy , organic diet , and exercised i felt great .
I decidedly did NOT feel great . I felt broken.
I was sick all throught the holidays barely comeing out of the 'Fog' for Christmas with my immediate family. I started thinking i had a hormone imbalance or something more sinister - could i have picked up a parasite ? I do like sushi , i am not a grem-phobe - i let the dog kiss me and i do not always wash evrything before i eat it. If it says pre-washed i don't always do it at home. Does anyone ?
I suffered through several more sinus infections , took antibiotics when weeks passed and i couldn't get rid of it . I would feel better for awhile and then BOOM something else would hit. It was near my birthday when i noticed burning when i would pee.
Oh no - a UTI , now ? I haven't had one in years .
i marched to my GP who was now starting to look at me funny . "what's wrong with you lately " she asked , not unkindly.
That's what i'd like to know.
My urine culture was negative but the Nurse Pratitioner gave me Cipro and said to come back in three days if it didn't clear up.
I was back .
And i had a sinus infection again , too .
And an upper respiratory virus .
I asked my GP to test me for anything and everything under the sun . Hormones, blood , thyroid, anyhting else she could think of and give me a complete work-up.
"This isn't me " I said , " I don't get sick like this and i heal fast . I feel tired ALL of the time no matter what i do . Something is wrong with me."
She agreed to do some tests to try and figure out what was going on .
Unbeknownst to me she added in a Lyme Disease two-tier test ( she had once contracted this in the 80's and always tested for it as a result ) . My tests came back and everything was normal - EXCEPT for the Western Blot test .
"I know why you are so sick ", she said over the phone " You have Lyme Disease"
My mind reeled . Everything i knew about Lyme disease ( not much, as i would soon learn) told me it couldn't be. "but i didn't have a rash "
"Not everyone gets it " she said. "It would explain all of your symptoms and inability to shake the infections. I am putting you on doxycycline for 28 days , that should take care of it "
I was speechless . For the first time in my life.
" okay" , i said and hung up the phone.
I went straight to work learning everything i could about Lyme Disease. I went to the CDC site and the NIH site . Not very much information and it was very concise and close-ended. I suspected there was more to learn.
Boy , was i ever right about that . I soon learned more that i ever cared to know about tick-borne disease , arrogant scientists, doctors and the organizations they run , the meddling and insensitivity of insurance companies, the thousands of suffering children and adults who are denied care , the controversy over 'official' diagnosis versus clinical observation and whether 'chronic lyme disease ' even exists- and the most frightening of all - the mercurial and morphing nature of the Borrelia Burgendorfii , the bacteria responsible for so much confusion and illness. The only thing all the 'Experts' can agree on is that there is much still unknown about this bacteria and the illness it causes.
In the meantime , a growing number of lost souls are stuck in the crossfire .
I am now one of them.
i am a "Lymie".
We traveled to W. Ma. first to spend time with my family and stayed at the Lord Jeffrey Inn in Amherst. The foliage was peaking and gorgeous and we strolled around town enjoying the quaint New England scenery. It was warm enough for bees to be out although in the morning a band of bumblebees on the asters in front of our Inn stood frozen in time from the frost laden dawn. I felt somewhat frozen , too as my allergies turned into a head cold . I was achy and tired but thought nothing of it.
We arrived a few days later in New Jersey to stay with friends . My head cold turned into a full blown flu and we cut our trip short to head home.
I did all of my normal holistic healing tricks ( vitamin C , raw honey, zinc, nasal washing , probiotics, chicken soup ) but instead of feeling better in a few days , my nose completely shut down , no air , no sense of smell or taste and i had a raging ache in my head , jaw and face. My neck was so stiff i could barely turn it.
After a month of illness i gave up and went to my GP. She diagnosed an acute sinus infection ( something i have never had before ) and put me on an antibiotic . It barely made a dent but by the end of the week i felt some relief so i thought it was on the way out. A few days later it roared back stronger than ever and i started feeling dizzy.Back to the Doc. She put me a stronger anti-biotic Levaquin which came with a short novella of warnings and side effects from the pharmacy. I was desperate and i took it .
That night i had wildly violent and bizarre dreams . I woke up profusely sweating and felt all tingly . I blamed the Levaquin but since i wasn't dying i kept taking it.
I continued to feel dizzy , tingly and nauseous but i soldiered on . Some of these were listed side-effects afte rall . Nothing to be concerned about right ?
By the end of the Levaquin i could feel the sinus infection lifting but my ears started ringing , felt painful and my hearing was muted- like i was perpetually underwater.
I decided to go see an Ear Nose And Throat specialist and see what was going on.
I was vacuumed and examined and given another course of antibiotics - this time Amoxicillin. She suggested i see an allergist .
My sinus infection finally cleared up - not gone exactly but much better so that i could function fairly normally and the bizarre buzzing and tingling abated. My ears felt better , too. I had a battery of allergy tests and the results were " a slight allergy to house dust and mold " Nothing out of the ordinary.
A few weeks went by and i started running again , something i had let slip due to not feeling well . When i got back from my first run i felt good but when i looked in the mirror i was shocked. My face was all red and puffy like i had been skiiing in below freezing temps ! I passed it off as wind-burn ( something else i have never had except in the above scenario) .It lasted for the day then faded. Strange.
The next time i went for a run my hip felt on fire . I had been getting that same feeling in September and attributed it to an ITB injury. I must be getting old, i thought.
This time it didn't go away but persisted anytime i tried to exercise .
Even when i did yoga . That was really strange.Then it went away as mysteriously as it had appeared.
After two weeks of feeling 'well' i ended up having the same old probems with my sinus , ears and frequent headaches along with bone-crushing fatigue.
Now i was confused. Usually when i took good care of myself , got lots of rest , ate a healthy , organic diet , and exercised i felt great .
I decidedly did NOT feel great . I felt broken.
I was sick all throught the holidays barely comeing out of the 'Fog' for Christmas with my immediate family. I started thinking i had a hormone imbalance or something more sinister - could i have picked up a parasite ? I do like sushi , i am not a grem-phobe - i let the dog kiss me and i do not always wash evrything before i eat it. If it says pre-washed i don't always do it at home. Does anyone ?
I suffered through several more sinus infections , took antibiotics when weeks passed and i couldn't get rid of it . I would feel better for awhile and then BOOM something else would hit. It was near my birthday when i noticed burning when i would pee.
Oh no - a UTI , now ? I haven't had one in years .
i marched to my GP who was now starting to look at me funny . "what's wrong with you lately " she asked , not unkindly.
That's what i'd like to know.
My urine culture was negative but the Nurse Pratitioner gave me Cipro and said to come back in three days if it didn't clear up.
I was back .
And i had a sinus infection again , too .
And an upper respiratory virus .
I asked my GP to test me for anything and everything under the sun . Hormones, blood , thyroid, anyhting else she could think of and give me a complete work-up.
"This isn't me " I said , " I don't get sick like this and i heal fast . I feel tired ALL of the time no matter what i do . Something is wrong with me."
She agreed to do some tests to try and figure out what was going on .
Unbeknownst to me she added in a Lyme Disease two-tier test ( she had once contracted this in the 80's and always tested for it as a result ) . My tests came back and everything was normal - EXCEPT for the Western Blot test .
"I know why you are so sick ", she said over the phone " You have Lyme Disease"
My mind reeled . Everything i knew about Lyme disease ( not much, as i would soon learn) told me it couldn't be. "but i didn't have a rash "
"Not everyone gets it " she said. "It would explain all of your symptoms and inability to shake the infections. I am putting you on doxycycline for 28 days , that should take care of it "
I was speechless . For the first time in my life.
" okay" , i said and hung up the phone.
I went straight to work learning everything i could about Lyme Disease. I went to the CDC site and the NIH site . Not very much information and it was very concise and close-ended. I suspected there was more to learn.
Boy , was i ever right about that . I soon learned more that i ever cared to know about tick-borne disease , arrogant scientists, doctors and the organizations they run , the meddling and insensitivity of insurance companies, the thousands of suffering children and adults who are denied care , the controversy over 'official' diagnosis versus clinical observation and whether 'chronic lyme disease ' even exists- and the most frightening of all - the mercurial and morphing nature of the Borrelia Burgendorfii , the bacteria responsible for so much confusion and illness. The only thing all the 'Experts' can agree on is that there is much still unknown about this bacteria and the illness it causes.
In the meantime , a growing number of lost souls are stuck in the crossfire .
I am now one of them.
i am a "Lymie".
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