posted
If You Had the Chance To Do It All Over Again...
1987 - 1999 - living in Upstate New York Ticks Galore - Everyday At least twice - Found ticks hiding out on me for days. Never tested Never EVER Treated.
Never even entered the equation.
14+ years later -suddenly realizing... (yes, I was living under a rock )
Most likely many co-infections, re-infections, new infections given symptoms, lifestyle, pets, travel, etc.
Have been on Antibiotics, like 7 times in entire lifetime. (Always make me feel bad - hmmm?)
July 24, 2008 - ELIZA - through Quest = negative Blood drawn that Thursday - Quest tried faxing results on Saturday (Done in 2 days? )
Waiting for Western Blot from LabCorp ? Done late this past Friday, August 8, 2008 (actually an hour after they closed - ooops!) See I'm already making mistakes.
Symptoms on and off over past 14 years: Sudden and severe Pain in Knees, Hips, Headaches, Neck, about in that order, plus many more etc. (I know I'm an idiot)
Very ill in 2003 immediately before birth of 2nd child: Felt poke in left arm - little bump - then out of no-where - in hard labor within 24 hours - Almost had her in the car. IV antibiotics given in that arm in hospital = next day Big rash - shingle-like with Pain and SEVERE Itching, Insomnia, felt like I was dying, BAD fungal infection in ears, etc. But infant daughter very - ill -crying non-stop. She took priority -tests, test, test, on my little baby. We learned to cope - adapt -survive. Sustained neuropathy in left ulnar nerve - Never, ever the same...
2003-Current: Fatigue, Heart/Chest pain, Shortness of Breath Head Feels Hot & Swollen Numbness / ``pins & needles'' in arms, hands, legs, feet, etc. etc.
2007 - Now:
VERY ill (the worst yet) unable to function. Progressively worsening.
All the old symptoms, cycling through in order, but less severe ?
Plus New ones:
Severe BONE PAIN - deep and boring in back Severe Chest Pain Esophageal Spasms - couldn't eat Brain - not working properly Can't talk - blanks - use wrong word(s) Getting confused - lost On and on and on -- a laundry list of symptoms
Kids sick too often, strange rashes, daughter still can't sleep through night (she's almost 5 years old)
I am having trouble today - brain, pain, can't use hands right.
It's like torture - the waiting when I finally have an answer.
Finally something and it needs to be treated but no one will hear me !
I have an appointment with a Dr in Hermitage - J But not until September 19th
I am going to a local support group meeting tomorrow night.
So as I wait with this horrible pain boring deep into my back bone, with my blurry eyes - mistyping every 3rd letter. I ask all of you...
What would you do if you were me?
Starting from the beginning but obviously a very late untreated infection that has progressed severely.
What would you do differently? What testing? Co-infections ? Labs ? What treatments ?
What can I do to help while I wait ? I get worse everyday...
Thank You, Sam
P.S. I hope this makes sense
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
It is good you are seing a llmd.
I am sorry you have to wait . it seems like it is becoming more common that llmds have waiting lists (cant imagine why )
With any lyme test you can still test negative and have lyme...the same is true of coinfections.
but igenex is better than most labs. I would want to be tested for coinfections through igenex also.
Your llmd will probaly do this but if you could get another dr to order the tests and have the results when you see him ..maybe it would be helpful.
You should write a list of your symptoms and any questions you have to bring to your llmd appointment.
posted
Thank you for the encouraging words, AZURE & Lymetoo. (Hopefully a few others will ring in as well.)
Yes, I will use Igenex if needed, (sent their form w/state certifications, to my neuro last week but no response on that - big surprise to all of you -no doubt. )
My big question is what can I do while I wait? Wouldn't taking something - anything - NOW help? At least a bit.
I am currently taking:
Ativan & Percocet (Which I fear & loathe.)
Acidophilus Multi w/iron & Calcium Folic Acid B-12
I am reading/learning as much as I can but it's so frustrating to just let my body be damaged like this as I wait.
The thing is AZURE, with my symptom list... Uh.. well, it's so long that it overwhelms doctors.
Just last week, I saw a new hematologist (my 3rd) He had the decency to be honest as he said: ``You overwhelm the doctors!'' But then he was compassionate enough to say: ``But you are obviously overwhelmed yourself and suffering a great deal.''
Eh, tell me `bout it !
Should I really bring the whole-shebang to the LLMD ?
Since 1994, I have experienced the following series of symptoms:
Rashes Frequent Flu-like illnesses Severe Knee Pain Headaches
Sudden and Severe Neck Pain and Stiffness Back Pain Intermittent Fatigue Arm Numbness - Nightly
Hip Pain & ``Clicking'' Blurry Vision Decreased Night Vision Increased Clumsiness/ Poor Balance
Unexplained Breast Discharge Sound Intolerance Increased Thirst = Water = Frequent Urination Recurrent/ Resistant Fungal Infections
``Shingle -like'' Rash and Illness - 2003
CURRENT & NEWER SYMPTOMS: 03-27-08: passed out - ER 04-02-08 - T.I.A. - Admitted (they dx'd as complex migraine with aura but it was NOT) Chest Pain, SEVERE Back Pain - BONE *This is really frightening*
Esophagus Pain, Spasms? Difficulty Swallowing Sensation of Food/Pills Stuck in Throat Sudden Weight Loss due to inability to eat solids - ER twice then admitted
Throat Pain, Toad-like Bumps on the Back and Sides of Tongue Left Ear Pain Neck Pain
"Pins & Needles x10" :Numbness in Arms, Hands, Legs, and Feet Intermittent Pressure/ Fullness / Throbbing in ``Neck Veins'' Low Grade Fevers
Twitches/ Muscle Spasms ? Tremors ? Leg Pain - deep. Back of lower left calf Left Arm Pain Tingling/Pain in Back - band like
Hair Loss Menstrual Irregularity *that one above is really scaring me too -I have always been soo regular no matter what*
Fatigue Weakness Shortness of Breath Dizziness Blood Pressure Changes Near-Fainting
Trouble Speaking, Finding the Right Word, Using the Wrong Word(s), Stuttering Difficulty Writing, Skipping -Using Wrong Letter, Wrong Punctuation
Can't do/listen to 2 things at once - used to multitask efficiently. Difficulty Following/Remembering Multiple-Step Directions Coordination Trouble: Turning Pages, Manipulating Small Objects Confusion, Poor Memory, Getting Lost Anxiety & Insomnia
In the future, I would like the opportunity to discuss my symptoms further with you and I can provide documentation in greater detail.
Some, like the pain in my; knees, hips, back, and neck, were sudden and severe in onset but resolved rather spontaneously - only to reappear intermittently throughout the years.
Usually, they were most severe during the initial episode, reoccurring to a lesser degree and/or for a lesser duration.
I continue to experience many today. I did seek medical treatment when I could and I am currently in the process of obtaining any medical records that may provide more accurate dates, etc.
Initially, I attributed many symptoms to my work as a waitress and/or stress and I just learned to live with them.
Later, Porphyria offered a possible explanation. But now I am too ill to function, my life completely altered, with symptoms that I can no longer live with or ignore.
I cannot express to you how devastating this has been to me and my family.
************************************************************ It took me weeks to get all that done and I'm sure I'm forgetting a few. That was always the weirdest thing - the symptoms were so numerous but they were generally intermittent -cyclical.
I have also been working on a more detailed account of the symptoms, ie: when it started, where I went for treatment, etc. And that is even BIGGER !
I know it's a lot - I wish it weren't so - reading it is a lot easier than living it.
Is there a way to condense it? Terms that I don't know, that I could use to shorten it up?
Thanks Again, Sam
[ 11. August 2008, 08:18 AM: Message edited by: sameetra ]
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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bettyg
Unregistered
posted
hi sam, very detailed post, but this neuro lyme patient could NOT read majority of it! most of here are neuro lyme!
please go back to your posts and break them up more...
suggestion ... list all your symptoms going DOWNWARD; much easier to read!
hit enter 2 OR 3 times to separate things!! ********************************************
WE Need that white space to help us comprehend. ******************************************
so list 5-7 things and then TRIPLE SPACE breaking it up
in my newbie package link are several LONG SYMPTOM LISTS; PRINT THEM OFF ******************************
print them off and circle/check mark every thing YOU HAVE! yes, it's overwhelming for US and them.
yes, they need the whole SHE-BANG!
some llmds have 15-20 pages of questionnaire they have you complete; has your llmd sent you anything?? best wishes!
IP: Logged |
I went back and edited the post. I will do more later if needed.
Just makes it longer !
Yes, the LLMD send a questionnaire but it's rather wimpy.
I can't help thinking that the order in which these symptoms cropped up and continue to cycle through is somehow diagnostically significant. So it is difficult to be brief.
For far too long, I never gave them the whole picture (when I did - the Dr's would look at me like I was nuts ) and now it seems that really hurt me.
I dunno - maybe it would have made no difference at all.
Thanks, Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Sam Sorry to hear about your situation. Maybe you can start taking an RX antifungal. Lyme causes yeast, if you get a head start you might not be so adversly affected with yeast once you start ABX
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi.
I would add in some magnesium for sure.
Try some epsom salt baths...tepid water at first.
Drink lots of water.
Use something cold and lemony (like sugar free lemon ice) inbetween bites and swallows of food.
Cold and sour will help elicit a better, stronger swallow reflex.
What could you have done different?
Nothing really.
I never saw the tick that got me.
Just got ill and kept adding in symptoms until a severe decline in fall of '06.
Hardly functional at that time.
Just a gentle reminder.
Try not to post any doctor's names here. We protect them by using only initials.
Think about getting your children seen and tested by a LLMD as well.
I was the first in my family to be diagnosed.
This following a few years of bizarre symptoms and illnesses.
Several doctors later I googled my symptoms.
Finally was tested for Lyme (although testing denied by all the doctors' I had already seen).
Later (about 7 months) my husband was diagnosed.
Two months later, both my children were diagnosed.
Since Lyme and co-infections can be transmitted in utero and by breast milk,
It is important to have your children looked at.
Hang in there.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Yes, very sick with yeast infections: 2001 - intra-ductal in both breasts & 2003 - both ear canals swelled shut with infection in both ears.
NOTHING worked until Mid-wife prescribed 20 pills of Diflucan (very expensive -no generic then.)
That was the only time I have ever taken it but I got some Fluconazole yesterday: 100mg - once a day - only 14 pills.
Is that enough?
Should I take it with food?
Geneal,
How much Magnesium?
Any certain form?
I will try the epsom salt baths.
I was always a bather - very hot - but stopped when I got so sick last year - it made me feel so much worse - like poisoned. Thought it was the high chlorine in our water ?
Funny thing about the lemon water - I have been drinking HUGE amounts of that since 1994... Body must have known !
Will continue to do so.
I am working on taking care of my kids and hubby... a battle for sure.
Thank You, Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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Sorry for the delayed reply -- I have been too weak to type - yeesh! Only able to read, read, read with my fuzzy eyeballs
Where is the best place to be tested for Bartonella?
I think that I was just tested for Bart via Quest and it came back negative.
Does that amount to a hill o' beans?
As for the Acidophilus, the Purple Bottle says:
Rexall Naturals
Ultimate Probiotic Formula Acidophilus
made with BIO FLORA
Micro-encapsulated for Freshness 2 Billion Active Cultures *
******************************************
They aren't refrigerated -keep 'em in my purse. Take only 1 a day - been trying to take 3 but haven't been able to eat enough/remember lately.
That is all WRONG, huh? ( I had a hunch.)
I have been searching on here as to what would be better to take.
This Theralac seems well regarded here, but is quite pricey.
I called Costco and the pharmacist recommended Florastor which they carry for $30.00/60 capsules.
But I am now on Fluconazole -100 mg -once a day - and I as I understand the Florastor would be pointless to take with that.
I just started taking the vitamins last month.
I haven't been to NY to visit family and friends in over a year - too sick. But we had this camping trip planned for months: Rhode Island via NY and I wasn't going to miss it!
Got out of the hospital so we could go. Stopped taking meds that had me chained to the toilet in order to do so. (Then started to feel better in that dept. - Hmmm)
Got there a few days late but made it. We all SO needed a break from doctors and hospitals.
It was there that my family - so disturbed by the decline in my health - started to take a crack at my diagnosis. (They include: 5 RN's, a Vet Tech, and Emergency Medicine educator.)
On the second day of camping, my sister-in-law, ran out and bought me those vitamins, stating: ``Well, these can't hurt ya - `til they get it figured out.''
On the 4th night of camping -we're all sitting `round the campfire thumbing through my medical records, when another sister-in-law, quite casually - almost rhetorically - asks: ``And you've been tested for Lyme, right?''
``Uh, no. But that can't cause all this, '' I replied.
Their jaws all dropped.
She said: ``Uh...Honey, Lyme can really F*** you up, if it's not treated!''
Oh.
Silence.
They confessed that until that point they had all assumed that I had been tested years ago. And they couldn't believe that I hadn't been recently tested.
That night I went to bed thinking: I definitely was most likely exposed to Lyme at some point in the past but surely THAT couldn't cause all of THIS.
Passing out, Palpitations, Slurred speech, Tremors, and Severe Pain, and Gastroparesis, to name just a few. This was something serious, I thought.
Ohhh brother, was I in for an eye-opener.
Funny thing is... Upon returning home, I resumed the tedious rounds of doctor's appointments and when I reported my Current Medications & Dosages, I jokingly referred to the new supplements as the ``NY Protocol''.
Thought it was a cute nickname. (I've been trying to maintain my sense of humor with the medicos through all of this.)
Hadn't seen or used the word: ``Protocol'' in ages. I love words. Kyoto came to mind.
I didn't know a lick about TBD then and it was well before I had hit the net to read about this protocol and that protocol.
Well, no freakin' wonder I got all those weird looks when I requested to be tested for Lyme.
Funny, eh?
Well, not so much, huh?
Thank You All !
P.S. Just got back WB through LabCorp - negative. "IgM p41 Ab. Present Abnormal" I will post separately to inquire about this.
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Sameetra, Are you following a yeast free diet? No sugar and no carbs. Think Atkins diet
Fry labs is supposed to be good for testing Bart
Take care
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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Known/felt for years that something was just not right...
Thought anemia or something ? Dismissed by many docs.
Two Winters ago: Chest pains worsening and increasing in frequency, S.O.B., "neck veins" throb and feel pressure, head feels heavy, hot and full of blood, hear/feel pulse behind ears, numbness in extremities worsening - ALL intermittent.
Thought Cardio-Vascular, high B.P ?
After 1 or 2 ER visits for what felt like heart attacks (not panic attacks!) husband booked appointment with Cardiologist.
A very dismissive and arrogant pr*ck, Cardiologist says: Your Heart is A-okay, B.P. -normal. But you drink too much coffee and you are obese -see nutritionist.
(Just now discovering in my medical records that he rearranged and altered my symptoms to substantiate his false opinion of: "It's stress induced, anxiety and all in her head."
Nice way to cover his butt - should he miss anything, huh? Total Bast*** !
Nutritionist says: cut carbs ! And "You are drinking yourself fat, no sugar and milk in WAY less coffee."
I listened - and tried to make gradual changes. First few weeks went well. Lost 20 lbs.
Simultaneously, the severe, episodic upper abdominal pain that I have experienced since age: 11, began to increase in severity and frequency.
Landed in the ER for it - one night. Their DX: IBS. "Take this anti-depressant, we don't know how it works for IBS, but it does."
Yeah, right tell me another one.
Never - ever had any problems with digestion then or previously -only that episodic pain which I had managed to live with for 22 years.
After that visit I decide to pursue the stomach thing, yet again, but I luck out this time and meet a great Gastro. He begins a very thorough work up.
Then...
WHAM !
Anxiety, paranoid fixations outta no where.
Couldn't eat -couldn't sleep for days. Almost lost my marriage, my family, my mind. Went from 220 lbs. down to 150 lbs. in less than 6 months - in a very bad way.
Psych. hospital throws me benzos - a whole 'nother mess of trouble.
Sick, trying to cope and parent my children, on meds that I didn't want to be on in order to sleep and eat. What the hell is going on?
Then Gastro calls in August 2007: "You have an Acute Porphyria. Likely, AIP or VP. No real treatment, only management of symptoms, avoidance of triggers and carbs."
So...
I have been eating a Yeast Feeding-Frenzy Fueling Diet !
Quite the opposite for Lyme.
Abdominal episodes lessen, learn that they can be stopped with a cookie. A cookie? Okay, not just any cookie, but a good cookie, organic and simple from the food co-op - still a cookie? Pasta, Toast and Gatorade -only the orange - can pull me out of despair! Weird, right?
I hate Gatorade.
I can finally get off the benzos in October. I can eat without them, sleep without them and catch myself singing in the car again.
But something doesn't sit right. It doesn't all add up... I am still having ALL of these other symptoms, in fact, they are getting worse.
My symptoms didn't quite match the symptoms of other Porphyrics.
There were many similarities but also several notable differences:
They got relief from hot baths - I suddenly could no longer tolerate my beloved hot baths -felt poisoned.
I have always enjoyed foods that are known triggers for acute Porphyrias and continue to do so: broccoli, cabbage, coriander, etc.
Phflllsst - argh !
So now I am here, today, trying to find a balance. I hope that I will be able to do so.
Sorry for the rant, Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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