lymed out

my quest to getting these suckas out!

Archive for the category “lyme testing”

Just as expected.


That fax worked yesterday. Someone called back, however stupid me I had my phone accidentally on silent. I have the voice to text feature on my cell phone and this is what I get.

id

Nice huh? Just to be safe, I checked my voice mail anyway to make sure I didn’t have lung disease. I hate checking voicemail, it takes sooooo long to call in, enter your password, press 1, blah blah. That is why I have the voice to text feature! Which of course as you can see above is a fail.

And just to be double safe, I called her extension and confirmed verbally that the negative results were a “good thing”. “Yes!” she exclaimed, “You don’t have Lyme disease!”

Yay! Knowing that the Canadian Health Care System and successful Lyme testing is an oxymoron, this negative result has made me happy. I am not in any position now to try to disprove it and complain. My last and final test will be to retest with Igenex. But that will cost $200 and as much as I want to do that right now, that $200 can be better spent elsewhere.

Again, follow me on my new blog yada yada yada.

And then his happened


I have been off meds since Nov 27, 2013. I thought that I was finally done with this blog! Apparently not! Here is what happened in fast motion.

July 1, 2014 – Canada Day, my friends and I wanted to see fireworks. I was so excited. I see them all putting on the OFF repellent but only God knows why I didn’t think twice about spraying the hell out of my legs and arms since I was wearing a racerback tank top and really short shorts.

We ventured off to a horse track. Yes, where real horses ride. I was right up on the actual track at 9:45 PM. The fireworks were fun.

The next day at 8:00 pm, I am sitting in the car in front of a bank with my husband. My leg starts getting real itchy and I was wearing a long skirt. I lift it up and see this.

I look at my husband and say “What the hell is that???????????!!!!”
He says “It looks like a bulls eye”.
We stare at each other. I start driving to the walk-in clinic while yelling at him to google: “What medication to take when you first see lyme”, “What medication to take when you have a bullseye”, “Does bullseye rash mean lyme?”, “Lyme Re-infection”, “Am I going to die?”.

All walk-in’s are closed at 8:00 PM. Damnit.

I vowed to myself that I would NEVER, NEVER go back to the ER unless I collapsed on the floor and can’t get up, or if my heart stops, or if someone shoots me in the face. However I thought this time was pretty prudent. Although pissed off that it was neither of the above 3 reasons.

Get to the first ER, the line up was out the wazoo. Drove another 30 km to another ER. Good. Waited only 1.5 hours.

Get into the second waiting room. ER doc is nice and handsome probably mid to high 30’s. High, I see we have a rash case here? I told him of my lyme history in 1 sentence and lifted my skirt. The rash was on the inside of my left thigh. He said “That’s Lyme! Let me go get my prescription pad and write you some antibiotics.” Off he goes.

Another nurse walks in. “Hi, you are the rash girl. Can I take a look?….. Wow! that’s some rash!” Off she goes.

Another doc walks in. “Hi, I hear you have a rash? I’ve never seen this rash, can I take a look?…. Holy cow, that’s crazy!” Off he goes.

“HEY! IF ANYONE WANTS TO SEE A LYME RASH, GO TO ROOM 2!”

Doc comes back and gives me 21 days of doxycycline 100mg BID (twice a day). Gets me blood work to do the Canadian testing. Gets me an appointment with the Infectious Disease doc. (who hasn’t called me yet).

Go home. I am in shock. Yes, at the events unfolding before my eyes, but even more so, these docs believed I had lyme and didn’t try to pass it off as some ringworm rash.

Email my LLMD and Naturopath the next day. Meds are not enough. You need 200 mg of doxycycline BID for a minimum of 6 weeks. Naturopath told me to add 30 drops 2x a day of Samento (which thankfully I had in my stash).

Emailed Acupuncturist. She said that this will NOT be like starting from square one because I have been doing the acupuncture and chinese herbs.

Go back to Dr. Handsome Chest Hairs and explain the situation. “But don’t you need to have the tick embedded in you to get lyme?”. Um No. Get more meds.

All done.

———————-

Any symptoms? None other than the side effects of the medication? I don’t know. A little vertigo? Some nausea? I had to cease my chinese herbal medicine that was treating my fibroid. Can’t take so much stuff. Can’t go out in the sun now because of the doxycycline, which completely sucks, you know because it’s summer and all, but oh well.

It’s all very surreal. My question is though, did this rash come up BECAUSE I already had it? And it was just a manifestation of the bite? Who knows.

I am thankful I caught it in less than 24 hours and they treat it as an acute infection.

I am thankful that the entire time I was starting to panic, that this verse kept popping up in my head. Psalm 103:3 …. 3 who forgives all your sins and heals all your diseases…” I kept repeating this over and over and my panic subsided… ”

God’s got my back! And He’s got yours too. Let Him in.

 

Death by 1000 paper cuts – Part 1


This is going to be a gripe post. Just a warning. I hate going backwards, but sometimes you need to.

Nothing is ever easy with Lyme. Seriously, I mean nothing. Nada. Zilch. Zero. This isn’t me complaining about feeling like crap. Infact, that is quite the opposite. I have had the longest bout of symptom free days (even weeks) for the first time ever in over a year. So lets get that out of the way. Hooray!

This is more a pissy post about the “administration” of Lyme. My days have gotten fairly busy, and I can totally forget about the presence of Lyme, except for the reminders of pills every couple hours. However, that usually comes to a halt after my chat with the LLMD. I am thrown back into the world of getting prescriptions and lab requisitions, counting pills and doing pill charts.

Normally, I have no trouble going to Dr. Handsome Chest Hairs, which I did again. I got my med refills fairly easily as well as 12 requisitions for blood labs. The lab requests should technically last me for one year, however the occasional Liver or WBC screw up will render me into the blood lab every 2 weeks using up my precious requisitions. Now I find out the lab will only let me use 6 of them because OHIP doesn’t cover anything past 6 months.

Because my liver was screwy 2 weeks ago, LLMD asked me to add Gamma GT to the list. This also checks something in your liver I assume. Here are my blood labs again. My ALT is back at normal range but this Gamma GT is up. I don’t even know what this is and I am tired of google, so if someone can shed some light, I will blow you a virtual kiss.

dec18

Another thing I forgot to mention is the CD57. This lab test is supposed to determine the level of infection you have due to Chronic Lyme. Many swear by it, but recently many docs, including mine, say that this test doesn’t really say anything. Some people will low CD57’s feel great, while some with high CD57’s feel like crap.

So I asked Dr. Handsome Chest Hairs for a CD57 lab requisition just for the sheer fun of it. “A CD HUH? I know a CD4 (which is the HIV test), but what is a CD57?”.

I get the lab req anyway and did the blood work where only ONE lab would do it because heaven forbid that Canada makes things easy. I totally forgot about this test which was like 3 months ago. So when I asked Dr. Handsome Chest Hairs what the results were, he looked at the sheet and basically it was “inconclusive due to serum being left too long over the weekend.

It can’t get any better than this. Oh. Yes, but it can.

As I mentioned in my previous post, I will be put on a new treatment which includes the antibiotic Alinia (Nitazoxanide). This is to be pulsed 5 days on, 7 days off. While I am on the 7 days off, I will be doing an Artemisinin pulse. Along with this, there are about 20 other supplements that need to be added. And then a fat free vegan diet. For 120 days. Kill me now.

Here’s a snapshot of what I will call the CANADIAN LYME ROAD BLOCKS. (this is me speaking from my experience)

  1. Figuring out what in the living hell is wrong with you.
  2. Convincing my 2 GP’s that I am not crazy.
  3. Getting and procuring a diagnosis.
  4. Finding a local doctor that will treat you.
  5. Finding a doctor within the province that will treat you.
  6. Finding a doctor within the country that will treat you.
  7. Finding a good doctor in the States that actually knows and treats Lyme.
  8. Getting an appointment without a 3 -6 month wait.
  9. Finding a doctor in Canada that will rewrite your prescriptions and order monthly lab work.
  10. Taking 5 antibiotics at once. Taking 25 supplements all day.
  11. Paying all of this out of pocket.

Now, onto the fun part. Here’s my morning of trying to ACQUIRE ALINIA IN CANADA

  1. Alinia is not available in Canada. No Canadian Doctor can prescribe it.
  2. You cannot have it shipped to your address or it will be confiscated at the border. You must get it in the states. If you go to a regular pharmacy, it is $1152 for 100 pills. Insurance doesn’t cover this. Nothing covers this.
  3. If you order it through an online pharmacy, it will be between $100 – $400 for the same amount.
  4. There are 2 online pharmacies: Canada Drugs.com or Northwest Pharmacy. Both are located out west in Canada, but they are not allowed to sell it in Canada. Please, someone explain to me the logic in this.
  5. When purchasing through one of these online pharmacies, you need a US Postal address.
  6. All Northwest Pharmacy pages that refer to Alinia are broken and dead links. I gave them a call for a quote. $841 for $100 pills. Huh? My doc said it was $100. Oh, for the generic pill, it will be $450. Hang up.
  7. Canada Drugs.com – Cannot find this damned medication anywhere on the site. Went to online chat. Gave me a dead link again. Was allowed to place my order through chat except had to call in with CC info. Had to email the prescription AND mail in the hard copy prescription for refills. Had to email my LLMD again to mail me the prescription so I in turn can mail it to Canada Drugs. Are you dizzy yet?
  8. My prescription was for 102 pills. The rep said I can only get 54 because they are produced in India and have different regulations. 54 pills cost me $94.36. The shipping time is between 14-28 days.
  9. I need a USA postal address. I scream at my husband to get his cousin’s address. As usual, he took too long. My LLMD suggested on her sheet that I go to kinek.com. They are a postal service where you can have parcels delivered to you across the border. I quickly signed up and used their address.
  10. I am still talking to the rep on the phone. I was then notified that Alinia’s stock will not be replenished and that they may not be sold as of January 1, 2013. I ask why can’t I just get the 100 pills. Because they aren’t allowed to prescribe anything past 3 months.

What I have to do now.

  1. Drive my ass to Buffalo and pick up these meds. Hoping I don’t get arrested for possession of drugs that are not allowed in Canada.
  2. Figure out how and where I will be getting my other 48 pills when this set runs out.

Question for you.
What should I do when I pick up these pills? Stay over a few hours, “pretend” to go cross border shopping, dump all the pill packaging and put it in a regular pill box? Do dogs sniff pills in your purse? Or do I tell the truth and say I went to pick up meds because they aren’t available in Canada and risk repercussions of any kind?

Do you see how completely ASS BACKWARDS the Canadian System is and this whole convoluted mess we are in?

Seriously, acquiring a medical degree in brain surgery seems like cakewalk compared to this.

RANT OVER.

Have yourselves a very Merry Christmas!

The brighter side of the Canadian Healthcare System. Did I just say that?


I have read lots of stories about how many have had to endure financial burden to diagnose and treat Lyme. Ranging from $10,000 to $300,000 +. It’s appalling. I’ve calculated my expenses to date and in the past 6 months, I’m sure I’ve tallied now about $7,000 out of hard earned money. Guys, that’s 20 Coach bags.

But then I am reminded of how fortunate I am that I live in the land of glorious and free. Because that $7000 could have easily been much more than that.

I am great at record keeping. For the most part. If I am passionate about something and it’s important, excel is my best friend. So earlier on this year, I drew up a spreadsheet of all my doctors visits over the past 2 years. This was to keep a record of what was going on because of Lyme. I tallied about an estimated $3500 in free healthcare. Although some will argue that we pay so much taxes, it all works out. But that’s another post reserved for a financial or political blog. Both of which does not interest me.

One would normally see a doctor once a year or 2 for a checkup. Heck, there was a period in my life between the age of 17-29 where I saw NO doctor.

Fast forward to now and you can see a snapshot of my medical visits. This chart does not include Chiropractor, Naturopaths, Homeopaths, Acupuncturists, LLMD Visits, and any other appointments I had to pay out of pocket. Everything here has been covered under our Canadian Medical System. The numbers aren’t accurate either because I am not really sure the costs of consults, ct scans and all that rigamarole. I did however find this PDF through the Ontario Ministry of Health. This tells you how much Doctors, Radiologists etc are allowed to bill per service. It’s a billion pages but very interesting.

Because many have been living in Canada all their lives, we are accustomed to going to a doctor, flashing our medical card, getting free service and thinking nothing of it. We take this for granted. What! We have to pay $60 for an eye exam! The horror!  All I can say is: Perspective people! Aren’t you glad you don’t have to pay for your colonoscopy? or a mammogram? or cancer treatment?

I guess this post is really to say “Thank you Canada, that we are able to get free healthcare.”

Now, if only you can educate your Doctors on Chronic Lyme.

I apologize in advance if this post has offended some.

So it’s not all about me anymore.


If it’s not one thing, it’s another. From 2 posts ago, I mentioned that I took my 5 year old to have him tested at my LLMD’s office with the IgeneX Western Blot. I got the results yesterday (shown above). As I did this mainly for the reason to have peace of mind, there really is no peace. The bottom line here is that he has been “exposed “ to Lyme and according to these results, it shows that he has made antibodies specific to Borrellia. Remember IND means a small yes. More details below.

Source from: Western Blots made easy

Igenex Western Blot Break Down by band

• 9 cross-reactive for Borrellia
• 12 specific for Bb
• 18 highly specific to Lyme (from the link above by Dr. James Schaller, if this band alone is positive, you have Lyme)
• 20 cross-reactive for Borrellia
• 21 unknown
• 22 specific for Bb, probably really the 23/25 band
• 23-25 outer surface protein C (OspC), specific for Bb
• 28 unknown
• 30 unknown; probably an outer surface protein; common in European and one California strain – Has cross-reactivity with several different types of viruses
• 31 outer surface protein A (OspA), specific for Bb – Has cross-reactivity with several different types of viruses
• 34 outer surface protein B (OspB); specific for Bb
• 35 specific for Bb
• 37 specific for Bb
• 38 cross-reactive for Bb
• 39 is a major protein of Bb flagellin; specific for Bb
• 41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas)
• 45 cross-reactive for all Borellia
• 50 cross-reactive for all Borrellia
• 55 cross-reactive for all Borrellia
• 57 cross-reactive for all Borrellia
• 58 unknown but may be a heat-shock Bb protein
• 60 cross reactive for all Borrellia
• 66 cross-reactive for all Borrelia, common in all bacteria
• 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
• 93 unknown, probably the same protein in band 83, just migrates differently in some patients

Further excerpt by Dr. James Schaller, M.D. on Western Blots made easy.

Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant–perhaps this is a rhino? This is the 41 band. It is from the flagella’s, the parts inside Lyme that help it move—they get a lot of attention in the body, in the same way a whip snaps and gets attention in the hands of an expert user. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones’ point. It you see a Western Blot 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme—just like double tusks on an elephant.

What Do the Number of Pluses Mean?

IGeneX gives levels of antibodies. One + means you have some antibody of that type. A single positive is plenty strong, because that is the same level of brightness seen in the positive control run next to your blood test. This means they run a fake sample with all 13 proteins which should show always show up as 13 positives. It helps confirm no error in the testing.

If you have a ++ or a rare +++, this means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives sometimes goes up with treatment and healing of the immune system. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have “IND” or indeterminate findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. Consider a positive in the level of a single + to be a sharpie flair black line. I consider the IND to be a black pen line.

In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the IND sometimes becomes a clear + which means you now have new and clear antibodies against this part of the Lyme bug. I consider all IND’s as weak positives. This is my opinion.

Currently, IGeneX does not use Dr. Jones’ criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies and in general the government is perhaps decades behind real-world clinical medicine. Apparently, the government and many insurance companies blindly follow 14 individuals who actually think they can control 800,000 physicians and 300 million Americans.


So my questions are:

  1. Could this have been passed in utero? If you compare my IgeneX results with his, you will see we have the same bands marked, his is IND, mine is ++. I showed symptoms 3 years after he was born, so does this mean that my Lyme was dormant in my system? Or could we have been vacationing together and got this? All unknown.
  2. Do I treat him if he has absolutely ZERO symptoms and awaken a potential beast? Or do I treat him when symptoms start coming if at all? At which time from what I read, it can be either slow or fast.

My LLMD’s response:

All you can say from a Lyme blood test is that there has been exposure to the Borrelia Burgdorferi (Lyme) bacteria if there are either IND (indeterminate= weak positive) or +’s (positive’s) next to the ** bands (except for band 41, which is + in all Lyme patients, but is not specific for the Lyme bacteria – it can be from bacteria in the mouth). So an IND or + in bands 23-25, 31, 34, 39, or 83-93 means they have been exposed to the Lyme bacteria. (There is no mention here of Band 18)

You cannot say someone has Lyme disease from a test result that says “positive” because the only way to make that diagnosis is clinical symptoms. Some people have a positive test but no symptoms – they do not have Lyme disease, they have been exposed to the Lyme bacteria but without symptoms they cannot be said to have Lyme disease.

LLMD’s Bottom line: Don’t treat based on labs, treat on symptoms. This brings me back to what my LLMD told me 2 weeks ago. “ Be weary about trusting tests. It is not about proving it on a piece of paper. It’s about how you feel.” Of course, this is only in relation to Lyme.

My Lyme Homeopath’s response:

I emailed my Lyme Homeopath to get his interpretation of the results and he said this is suspicious of Lyme and to do a Lyme Challenge (if I wish to). The Lyme Challenge (which is what I did back in March 2012) is when you take herbs such as Cat’s Claw or Teasel Root for several days to see if it produces a herx. A 5 year old would most likely do 1/4 adult dose. I asked if this would “awaken the beast”. He said no. But I am not sure if I want to do this because I’m not trying to prove whether he has Lyme or not (like in my case). Infact I want to disprove it. If I were to treat him, I will not subject my 5 year old to harsh antibiotics. If anything, I will do as my LLMD advised on symptomatic kids and start him on the Cowden Condensed Protocol with specific dosages according to weight. However, I need to do more research on that and I need to monitor him on symptoms. In the meantime, my pantry will be cleared out of all skittles, gummi bears and chocolate chip cookies.

Another great point that he brought up was the mention of Dr. Dietrich Klinghardt where his theory is that 70% of people on earth are walking with Lyme antibodies and their immune systems can fight off the infection.

Homeopath’s Bottom line: Don’t treat if asymptomatic.

Dr. Marty Ross Response:

A western blot is a technique used to see if a person is making antibodies that attach to very specific proteins found on the Lyme germ covering. We identify the proteins by what they weigh. For instance, one of the proteins weighs 18 KDa (a KDa is a microscopic unit of weight.) On the western bot a + of ++ or +++ means that the tests detects antibodies against that protein. An ind could mean one of two things: there was a very weak antibody reaction so it is barely detected or during the test some dirt or another artifact showed up on the test strip. So an Ind could be a weak antibody reaction but is not always. A test is positive if there are antibodies against 2 of the following, 23-25, 31, 34, 39, 41 or 83-93. Ind do not count in determining a true positive. Having said this, I would interpret the results as very weakly positive given the number of ind findings at the 6 important proteins.

However, having a positive test or even a weakly positive test does not prove one has Lyme. We also have to consider is there a risk of getting it, the symptoms, any physical findings. So in the case of a person like your son who does not have any symptoms, I do not treat. It is possible that even if he has Lyme his immune system is dealing with it. I do not use antibiotics in this situation because they may not rid his body of the infection if it is present, it is also possible they could cause any Lyme to become dormant which is much harder to treat. Finally, even if he is on antibiotics, it is not clear how long to treat given that he does not have symptoms.

Yes, some of my patient had Lyme infection but not disease for many years and then they became symptomatic. Again though it is hard to tell who this will happen in.

Regarding the 18 +, the Europeans consider it to be one of the important proteins. I sometimes consider it, but prefer to look at the reaction to the six proteins I discussed earlier.

Dr. Ross’ Bottom line: Don’t treat if asymptomatic.

Ok, so I got 3 of the same answers from great sources and my mind is now at ease. Again, the good news is that he shows no symptoms at all, he’s very active, sleeps really well, very smart and intelligent especially with technology, on the ball, and can sometimes outwit me and always calls my bluff.

So what next? Right now, I must leave things up to God and pray that everything works out fine for our future. Next step, get hubby tested. I’m curious now to see if every living soul on earth has Lyme antibodies.

Just curious, what would you do in my situation and have any of you been in this dilemma? Any advice would be appreciated.

In other news, I got my monthly blood labs back and things are looking much better.

LLMD Office Visit – September 2012


DISCLAIMER: PLEASE SEE YOUR OWN LLMD FOR YOUR OWN SPECIFIC TREATMENT. DO NOT GO ON ANY LYME PROTOCOL WITHOUT FIRST SEEING AN LLMD.

Don’t ask me how I am finding the time to write this post. Today included a whole lot of running around and much of 4 hours were dedicated to waiting rooms, blood tests, medication refills and the like. If I added up how much time I have wasted due to this nonsense, I would have been able sew a quilt the size of a football field.

Saturday morning started with us driving up to Montreal, forgetting our passports for the NY Border crossing, turning back, but we eventually made it. Tuesday I was scheduled to see LLMD. Husband and 5 year old dropped me off and headed to the mall. I was 15 minutes early. The clinic was awfully quiet. The nurse took my vitals. She mentioned to me that the wait list now is up until January 2013.

Height: 60 in
Weight: 100lb (YIKES!!!!!)
Blood Pressure: 122/88 mmHg
Temp: 98.4 F
Pulse: 78 bpm
Resp Rate: 13 rpm

As the LLMD was in with a new patient, it went on longer than usual and I waited another 25 minutes. But I was welcomed with the biggest open arms. I asked if I can record the conversation on my phone because I will most likely forget what anybody said. The conversation started with me describing the second worst herx of my life (which actually ended on the Sunday). So as we speak, I’ve been about 4 days symptom free.

We went over my symptoms:

  • Burning Fingers, nausea, vertigo, drunk, head pressure, night terrors, anxiety, not hungry until moving around, all symptoms of underlying Babesia.
  • Metal taste – can be due to the Clarithromycin. Also due to heavy metal exposure. I asked if I should get the (3) silver fillings removed in my teeth. I was advised this was a wise idea but to make sure it’s done with a biological dentist. Even if you have an oral dam, you will still need to have oxygen, a mask on, air expeller etc. Since you are getting better, you will minimize the risk of mercury exposure by going to the right dentist. They will also give you IV Vitamin C after the treatment. If you do it, do it right.
  • Math is the first thing to go with adults and children. Even an accountant who can balance something in minutes will now take 20 minutes.
  • Hormones can change because of Lyme
  • Beware of drinking from plastic bottles, lotions, petroleum as they have plastics in them. Use extra virgin coconut oil.
  • Colon hydrotherapy and coffee enemas. Highly recommended.
  • Beware with GMO. No canola oil. Stay on a healthy organic diet.

I also typed up a list of questions for our visit which are summarized below:

Q: On the 1st and 2nd round of Pulse A and B, I did really well. On the 3rd round of Pulse B, things started to get a little worse. More cotton head, vertigo that lasted 2 weeks. One night had the shakes really badly, cold clammy, hot and cold. Was this a herx or candida flare up?
A:
Symptoms get worse in the spring and fall. Was a possible herx. If it were candida, it would persist. With a herx, you will feel all these symptoms that are horrible, but they will get better. Hasn’t seen that with candida. If it were candida, they wouldn’t really get over the herx, newer symptoms would persist such as abdominal distension, trouble digesting food, coated tongue, sore throat, lots more joint pain, peri-anal itching. Yeast makes acetaldehyde, a chemical not good for the body and the liver will turn that into alcohol. As my symptoms went away, it probably wasn’t a yeast issue.

Q: Can I mix 50% alcohol teasel root, Kombucha with tinidazole.
A:
No. You shouldn’t mix. Even if you dine in a restaurant, make sure you are aware of what they are marinating the meats with. Even a wine marinade will cause a bad reaction. Remember this rule applies to Metronidizole (Flagyl). Kombucha is a fermented tea, however it may not make enough alchohol to warrant a reaction. But do a quick google search just in case.

Q:  How to bring up WBC levels. Should I be concerned with blood labs at all? Mine has been a steady 3.7.
A:
Be happy with a 3.7. Sometimes they will come up on their own after treatment. If they fall below a 3.0, patients are taken off meds immediately. If it goes below 3, patients are required to skip a day of medication per week. Choose the same day every week (Monday) to skip. Another way to bring up WBC levels is Cordyceps, a mushroom that can support the WBC. Low WBC means chronic infection. It can be toxins or mercury, which would bring me back to the silver fillings issue.

Q:  Wanting to testing 5 year old at appointment / recent Spider Bite in Sept 1 / No symptoms but diarrhea.
A:
Symptoms of children are hyperactivity, but hard to diagnose because boys are hyperactive to begin with. Other signs are “my tummy hurts, “I’m tired, carry me” (on a constant basis). Treating children with Cowden Condensed Protocol and they usually do well with it. Diarreah is not typically a sign of lyme, it just means his immune system is in overdrive.

Q:  Do any of your patients relapse? And if so, what is the treatment and is it quick to “bounce back”?
A:
Patients do relapse. They are treated with Doxycycline and Clarithromycin and a pulse of Metronidazole just to prevent a cyst form of Lyme from popping back up. Within 4 – 6 weeks, patients improve. It’s not going to be like starting over from square one.

Q: What if I get bitten again?
A: You have no immunity. None. Nada. Be careful where you choose to vacation. It is not all about Lyme. Sandfleas can spread infection. People are coming from all over the world, they are bringing their infections and there is a greater exposure. They are getting bit my mosquitoes and sandfleas. Sandfleas are notorious for giving the bartonella infection. Beware of Cuba and Dominican Republic. Do not allow yourself be bitten. Sandfleas look like tiny grains of sand jumping. Be inquisitive. Keep watch on the beaches. Do not sit on sand. If there are not enough chairs, sit by the pool. Or better yet, sit on concrete! When on a resort, some have private beaches where there are grass. Don’t sit on the grass. Get Samento which really helps.

Q: What is the CD57 test?
A: At first when it was published, CD57 was diagnostic of Lyme. And only people with Lyme had a low CD57. However in recent discussions, patients who have low CD57 have improved, others who have high CD57 were the sickest people ever received. It doesn’t look like a fool proof answer to anything. If you want to measure it before you off antibiotic you can. Gamma Dynacare offers it in Toronto. Or you get it through Igenex.

Q: When I can think about getting pregnant?
A: Would like to prescribe Cefuroxime and Zithromax a few months before hand. And take it during pregnancy.

The best sentence of the day said by LLMD.

Be weary about trusting tests. It is not about proving it on a piece of paper. It’s about how you feel.

Treatment Plan: September – December 2012
I will be on the exact same treatment plan as I have been for the last 3 months because I’m doing really well on it. We may change it up in December 2012 or March 2013.

TREATMENT PROTOCOL #3
October 2012 – December 2012


  • PULSE  A: for 10 days
    Clindamycin 150 mg (1 pills 4x a day)
    Quinine 200 mg (2 pills a day)
    Bab2 (by Beyond Balance):  23-50 drops (2x a day)
  • PULSE  B: for 10 days
    Plaquenil 200 mg (1 pill 2x a day)
    Tinidazole 500 mg (1 pill 2x a day) – Due to my intolerance of Flagyl, I’m taking this instead. Say hi to Flagyl’s sister.
    Clarithromycin 500mg (1 pill 2x a day)

Rotate these 2 pulses every 10 days for 3 months.


More Stuff

I got my little buddy the #188 and #189 Western Blot with Igenex. LLMD’s nurse drew the blood. He was a trooper and didn’t cry at all. I will get the results in 3 weeks. If he is negative, I won’t look at the $200 as a waste of money. I will have peace of mind and also that may be a good sign for me to gauge how long I’ve had it. If he’s positive, that’s another story and a whole other can of worms.

I was also concerned about the white thrush on my tongue. I was prescribed with Diflucan, or I can go on Grapefruit Seed Extract, Fiji Tea, adding fresh organic garlic to food (raw and crushed). Garlic also stimulates the immune system, improves circulation, kills intestinal parasites and lowers blood pressure. It is a powerful antioxidant. I can also use Caprylic Acid, a fatty acid supplement derived from coconut oil and is specifically effective for killing candida overgrowth in the intestines. (should not be taken by people who have ulcerative colitis). I can also optionally start on InterFase by Klaire Lab for the treatment of biofilm.

However as LLMD prescribed me with the Diflucan, my Canadian doc thought that this was too harsh on my system so prescribed me with Oral Nystatin (shown above) for 10 days. I am not sure what to do with this so I have to read up.

I also inquired about B12 injections and so I was prescribed with syringes and stuff that needs to be purchased through a compounding pharmacy. It is for 3 times a week. I hear that a normal person would do it once a month. Great. More questions from the pharmacy. I am not exactly sure what to do with it all, but my good friend over at Lyme Maze has sent me lots of info on where and how to properly inject this stuff into your buttocks. Getting the stuff is another story.


What I did today.

We are heading to Orlando Disney tomorrow! Even though I should have been packing, I was busy for most of the day as mentioned trying to get the above prescription re-written and filled. I didn’t go to Costco this time, I went to a pharmacy beside the clinic and the pharmacist asked out of curiosity why I’m taking all these meds. I said Lyme. She nodded her head. She knew it. She had another person have the exact same thing with the US Prescriptions. She said that Lyme is very rare. I said it’s often misdiagnosed as something else and we got into the whole politics of it. She was very interested.

And I also did my monthly blood labs. I did manage to get a requisition for the CD57 blood test even with everyone scratching their heads as to what this test was about, not only the doctor, but the nurse and the medical lab person who draws the blood. They all know about the CD4 which is the HIV test. They don’t offer the CD57 it at CML Health Care, so I will need to go to Gamma Dynacare.

This past weekend out of town, my husband and I also celebrated our 12 year anniversary. Well that’s officially on paper. I have known him since I was 12 years old, which means we have been in each others lives for about 26 years. As I was sitting down about to type this post, I see a little card stuck underneath my keyboard. I opened it and the last paragraph was this. 🙂

Ok, this was a very long winded post, I will end this for now. I survived our 11 hour drive total and about $1000 gouge into my pocket in total for this round trip of meds, tests, gas, consult fees, herbs, meals. UGH!

I will reconnect with you after we have oodles of fun with Cinderella and her step sisters! There will be lots of walking, and food challenges I’m sure. Hope I survive!

Infuriated. Frusterated. Rant.


First of all, I am not a Doctor. I only speak from experience.

I have been receiving many emails from folks in Canada who received their Igenex results at IND to positive bands and wondering what my take on it is because their own family doctor doesn’t believe them. They are being shipped off to Infectious Disease specialists. So, what is my advice?

RUN THE OTHER WAY.

I say this because I have been in your shoes. Dr. Gollum (one of my fam docs) looked at my Igenex Positive test results and says “I don’t think you have Lyme, I think you have Rheumatoid Arthritis. Let me send you to a specialist. But you have to wait 4 months” Mind you I had only mentioned to him in passing that I have “some fleeting minor joint pain”. He dismissed the fact of my other symptoms such as vertigo, upper abdominal pain etc and decided to focus on arthritis.

Canadian doctors don’t know much about Lyme because their medical textbooks say that you can only get it from a deer tick and you need a stupid bulls-eye rash. They will send you off to an Infectious Disease Doc because they don’t know what to do and want to wash their hands of it. Then you will wait weeks or months to see said Infectious Disease Doc who will then again mock you and say “There is no such thing as Chronic Lyme.” Then, they will either diagnose you with something else or give you a pill for something unrelated.

This is my advice. Rule things out. If you are getting weird symptoms like:

  • numbness and tingling like I had, get it checked out. I demanded a Head CT Scan and Brain MRI. Came out “remarkably clear” as said by a Neurologist.
  • unexplained tummy pain like I had, get a colonoscopy. Wasn’t fun but necessary. And get an abdominal MRI, like I did. Both came out clear.
  • upper GI issues, unexplained nausea, get a barium swallow, like I did, (results said regurgitation resulting in GERD diagnosis) an Upper Endoscopy done, like I did. Came out clear.
  • vertigo like I had, get a balance/dizziness test. All came out clear as per ENT.
  • random chest pains like I had, get an EKG. Heck, get 10 EKG’s. Clear yet again.

See a pattern?

If there are unexplained symptoms and the tests come out clear, something’s up. It’s not in your head. Do not take cymbalta or paxil. If one of your tests come out positive with something it could very well be the case. However keep in mind that Lyme mimics all diseases. Bottom line is trust your gut instinct. If something is off, something is off.

Don’t wait for Canadian Doctors to figure out what’s going on. Igenex is one of the leading laboratories in the US that diagnose Lyme and Co-infections. By the time your doctor takes his head out of his a$$, you would have saved much needed time by getting treatment instead with a good LLMD in the states. That’s the key. A GOOD LLMD who will treat you based on symptoms by a clinical diagnosis. The Igenex results are only supportive. That’s the other problem. Our own family doctors and specialists only rely on test results and that’s what we have be trained to rely on too. If the symptoms don’t fit their mold that is written on a peace of paper, then you are automatically diagnosed with stress or attention seeking. Lyme is way more than test results.

What about insurance?
Because I am self employed, I bought my own insurance while I was waiting for my Igenex results. It’s $99/month. But it covers dental, chiro, prescription, massages, eyes, and a whole whack of other stuff. I get my prescriptions re-written at either a walk-in or one of my family doctors. Don’t go into it with all the controversy about Lyme and talk their ear off. Now is not the time to get political. This will only scare them. Just say “Hi, I’m seeing a specialist in the States, and I need these prescriptions re-written for insurance reasons.” If they ask, state that you were diagnosed with Chronic Lyme and seeking care out of country.

What I find with most stories I hear is that if you are wanting a re-write of prescriptions with your own family doctor (who wasn’t able to figure out what was wrong with you), that they are hesitant in treating you because they have been with you every step of your journey and will mostly likely doubt your new diagnosis. A older friend doctor of mine even mentioned to me that doctors have egos. If they can’t figure out what is wrong with you, and you get a diagnosis from somewhere else, their ego’s are shot. It’s like getting a carpenter to fix another carpenter’s mistake. They won’t do it.

So, if you go to a walk-in or some new doctor, they may re-write it because they have no history with you. Again, this is from my own experience and theories I put together based on stories I heard.

What if I can’t afford it?
My neighbour once said to me awhile ago (before my Lyme)… “We all don’t even blink an eye at dropping $500 to fix the engine in our car. This is our health. I will pay whatever it takes to feel healthy.

I saw this in the newspaper the other day and finally got around to giving them my 2 cents. If you are in this area, please click here and give them your 2 cents. Even if you live in 5000 miles away, lie. They won’t know where you live, you don’t need to leave a name. It’s time for our voices to be heard. Do the survey, if not for me, for all those who are suffering needlessly. What did I complain about in the survey? About how my taxpaying dollars made me go to the States out of pocket. About how I have to wait an average of 6 hours in the ER, 3 hours at the family doctor, and how 10/10 of the doctors in my area are NOT TAKING any new patients. About how the idiot ER doc dismissed my symptoms and sent me home when I could have been treated right then and there and be done with this crap.

I am not a pitchfork in the night kind of person. However right now, I am just beyond tired of how the Canadian Health Care System aka Government is treating this. How misinformed doctors are. How they are only confusing patients who deserve treatment because of their lack of knowledge. How the internet is our only hope for answers.

We will seriously need a Lyme Apocalypse to take over our country before higher ups will start paying attention.

 

 

 

Mindless Chatter


I’m still waiting on the blood labs from my visit last week. If it involves Dr. 3 Hours and her staff, I wouldn’t be surprised if somewhere down the line, some process got screwed up. I usually get the results from my LLMD the next day and now it’s been almost a week. I’m curious to know if my cell counts are still low.

So this morning I went back on Pulse B, ate a big breakfast and went into the Sauna watching the (1989) 90210 re-runs on my ipad on netflix.

I started feeling woozy after a shower and then felt really really bad. My drunken, cotton head has been sneaking back and this time now I just had to sit on my bed for 20 minutes and let it ride out. Sauna Herx? Pulse B Herx? 90210 Herx?

Anyway, I forgot to mention that while I wasted 2.5 hours of my life away last week, I downloaded this game while in the waiting room. It’s called My Clinic HD, where you run a medical clinic. Hey, you get the option of helping patients get better or you can let them fatality suffer like us. But wait, if your nurse was a blond with big boobs, perhaps that might help your situation.

On another note, Lyme Buddy sent me this article a while back and it’s an interesting read. Take a look.

Past Weekend

We had our friends visit us from out of town and one excursion we had was visiting a farm that is owned by someone we knew. He is a dairy farmer. The kids had a blast, but at some point during the weekend, my 5 year old’s left ear ballooned up to the size of dumbo and the poor guy looked in the mirror and said “Mommy, I look weird.” We gave him Benedryl and don’t know what kind of bite it is. A spider bite? There were 2 incisions/bit marks. We don’t think it happened on the farm because it appeared 2 hours earlier. The swelling has gone down but he has had diarrhea now for about a day and a half. Should I be concerned? No fever, just a tummy ache and diarrhea and he hasn’t eaten anything out of the ordinary.

As for me, September will be a very busy month. At the end of this month, I will see LLMD. So here’s the schedule:

Sept 22 – Drive to Montreal (4 hours)
Sept 25 – Drive to New York to see LLMD (1 hour)
Sept 25 – Drive back to Toronto (5-6 hours)
Sept 27 – Drive to Buffalo (2.5 hours)
Sept 27 – Hop on Plane to see Mickey (3 hours)
Oct 5 – Fly back to Buffalo (3 hours)
Oct 5 – Drive back to Toronto (2.5 hours)

I HATE LONG DRIVES AND I HATE FLYING. Both for claustrophobic reasons. There wasn’t a direct flight in that part of NY where LLMD is situated without having 3 stop overs at the cost of $1200 and a 9 hour ordeal. No thank you. So I will need to tough this out and if I get sick that week and I get through it, that means I can get through anything.

I have also made the decision to get 5 year old tested through IGENEX when I see LLMD. She will do this for me. This is not because of the recent bite on his ear, but rather I just need to know where I stand with this and him. He shows no symptoms but I can’t live the rest of my life wondering does he or doesn’t he.

Let me poke you with this sharp instrument just because


And I thought I was doing good. I went to get my monthly blood draw and thankfully that guy wasn’t there. Instead, there was a new student this time, much older and looked much more interested in learning the techniques of piercing someone’s skin.

There’s something wrong with my veins and Husband continuously calls me a vampire, because simply put, no nurse or doctor can successfully draw blood from me.

I began noticing that it was hard to draw blood when I started going to the ER weekly for my unexplained sickness. One nurse (after multiple attempts of stabbing me) decided to use those “butterfly” needles. I asked “Why didn’t you use that before and spare me some agony!” She replies, “Because they cost $2.00 each.”

I guess that’s what we get with Public Health Care. So now I’m probably in my 100th round of blood drawing but this time I must say has to be THE WORST blood drawing in the history of all blood drawing.

Do you remember the scene under the bridge when Trinity takes out that bug from Neo’s stomach? THAT. Except the bug was my vein. And the contraption thing was the needle. INSIDE MY ARM.

On the instructions, I tell them to fax a copy to my LLMD so the next day I get the results from my LLMD and I notice all the abnormalities. She didn’t say anything in the email so I assumed that since they are all borderline, that I’m ok. Just to be safe (and to save myself from googling due to paranoia), I decided to shoot her over a quick email and asked if I should be concerned. She replied and said if WBC goes below 3, she normally has patients take a break from the antibiotics. With the RDW, she also said this will be discussed at my next appointment (Which is end of September!). So I dunno, what is RDW? Should I be concerned?

Please, someone just tell me so I don’t have to go to freaking Google.

LLMD Phone Consult


Guess what today was? My 3 month LLMD phone consult! I was so excited I was texting Lyme Buddy all giddy and we were both so nervous at what LLMD would say.

My phone call was to happen at 11:30am and I was making sure it wasn’t on silent every other minute. Finally at 11:40am, she called and apologized for being late. But I forgive her, after waiting an average of 3 hours at my primary doc, 10 minutes seems like floating pink butterflies.

Prior to our phone consult, her patients are required to fill out the symptom form and give a summary of what has been happening during the treatment  as well as write down any questions. The first thing she did was scream at me saying “You are doing so well! I am so happy!” I had listed my progress at 70%. She had reviewed my document and said that I have a really strong immune system. The rest of the conversation will be in point form:

  • I asked her how long she thinks I’ve had it. As my symptoms first started in July 2010, she says that this has been a while, however that I’m responding to the first set of medication really well and that my immune system is really strong.
  • She mentioned that the tremors, the lack of appetite, the fullness feeling after 3 bites, the nausea all were Babesia. She suggests that I do smaller meals with some protein to bring my blood level up to combat the hypoglycaemia issues (which is what I’ve been doing).
  • She said this next set will be a switch up of meds because the bacteria will get resistant to the drugs. She will be targeting Babesia. She isn’t going to put me on Mepron because it’s expensive. I will be on a Pulse regimen for the next 3 months.
  • As any parent would, we are concerned whether our kids have it. Because paranoia is my middle name, I asked her if my little 5 year old could be tested the next time we see her which is in September. She asked me if he was showing symptoms. I said he does complain of the odd pain here and there and that I’m over reacting, but I want to be sure. She said no problem, just bring your little guy to the next appointment. I figure it’s better for me to know rather than a lifetime of “Does he or doesn’t he.” He doesn’t vocalize as say Husband would, so a $200 test for peace of mind is well worth it.
  • She told me to continue with my homeopathy, but instead of the wormwood/artemisinin, to use Bab 2 by Beyond Balance.

New Treatment as follows:

PULSE  A: for 10 days
Clindamycin 150 mg (1 pills 4x a day)
Quinine 200 mg (2 pills a day)
Bab2 (Beyond Balance):  work up to 23-50 drops (2x a day)

PULSE  B: for 10 days
Plaquenil 200 mg (1 pill 2x a day)
Tinidazole 500 mg (1 pill 2x a day) – This is Flagyl’s sister. I mentioned that Flagyl caused me to see Satan and so she said to stop the GSE and take this instead.
Clarithromycin 500mg (1 pill 2x a day)

I am to switch between Pulse A and Pulse B. She said that I will most definitely herx and the babesia buggers will come out of hiding. By 30-40 days, I will feel even better. I asked her how long she thinks that my treatment will be for. She estimates about another 9 months. That would mean March 2013! I was a little bit taken aback by this, as I guess it hasn’t sunken in how long this would be. But overall she is really happy with my progress and said “You have made my day!”. She also mentioned she has 2 of her patients nearing completion of treatment.

The appointment was for 30 minutes. The phone consult was about 20 minutes. She spent the rest of the time preparing the prescriptions and emailed it to me within 10 minutes. The cost was about $135. I then got off the phone, chatted with Lyme Buddy for another 2 hours giving her the scoop (she speaks with LLMD next week, so I’m curious to know if she will be put on the same treatment). Then I ran off to Dr. Handsome Chest Hairs who re-wrote the prescriptions without even batting an eyelash. I think he was just in a rush to get me our of his office. Then I went to Costco and dropped off the prescription.

Overall a good day… can’t complain! I’ve also picked up about 5 jobs. If it was 2 months ago, I would have most definitely turned them all down. But I am feeling so much better right now, that my old self is coming through.

I must admit that I am a bit scared now with this new switch up. I cannot cannot cannot go back to that week that I had while on the flagyl. Please pray that this will be less of a herx than that one.


Behold, I will bring it health and healing; I will heal them and reveal to them the abundance of peace and truth. And I will cause the captives of Judah and the captives of Israel to return, and will rebuild those places as at the first. I will cleanse them from all their iniquity by which they have sinned against Me, and I will pardon all their iniquities by which they have sinned and by which they have transgressed against Me. Then it shall be to Me a name of joy, a praise, and an honor before all nations of the earth, who shall hear all the good that I do to them; they shall fear and tremble for all the goodness and all the prosperity that I provide for it.’ Jer 33:6-9

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