My Strange Lyme Story

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tickled
New Member


Date Joined Sep 2011
Total Posts : 8
   Posted 9/27/2011 7:41 PM (GMT -6)   
Everyone, I'm sure, has a strange story in relation to Lyme. Here's mine.

Five months ago, everything seemed great. I am a parent of three kids. I never suffered from "health anxiety" or any kind of abnormal anxiety. Then I was bit by a tick. 8 days later, I woke up in a sweat having what I could only describe as a panic attack (never had one before), but my doctor told me it was an arrhythmia. I'm unsure, because I never went to the hospital that night. The next day, I went to the doctor, and my ordeal began.

First, let me back up a month before the bite. One day, I'm working in my house, and I start seeing jagged zig-zag lines in my vision that are "electric" or prism colored. I then got a blind spot in my vision that expanded. This lasted about 20 minutes. I was at the neurologist shortly thereafter. He said I had an ocular migraine. My GP sent me to get a CT brain scan. All was normal. After that day, I had severe light sensitivity. The light sensitivity has not gone away, but it has gotten better and worse. This happened before the tick bite, so I thought it was unrelated to Lyme (I was wrong).

After the tick bite, I started getting headaches. I was extremely fatigued all the time. I had stomach ailments and indigestion. I lost my appetite (I lost 65 pounds in the last 5 months). I was nauseous. I had an inability to handle any kind of stress (like screaming kids). I was really not myself.

After the "panic attack" my GP recommended that I wear a cardiac monitor. The monitor picked up a wide-channel arrhythmia (potentially dangerous). That was the first time I ever felt an arrhythmia like that. My heart then started skipping beats (PVCs). I was prescribed a beta blocker, which knocked me into depression until I took myself off it a week later.

In the meantime, I went to an infectious disease doctor. He gave me doxy because of my symptoms while waiting for the Western Blot. The Western Blot came back negative, after being on doxy for at least 2 weeks. I stopped the doxy because my ID doc said I did not have Lyme because of the Western Blot. Trusting him, I stopped taking the doxy.

Then, my cardio recommended a cardiac ablation (where they burn away the arrhythmia by burning a piece of your heart). I did it. It cost 70K (thank god for insurance).

Things were better for a few weeks. Two weeks ago, my heart started skipping like crazy. The PVCs were back in full force. My light sensitivity also got much worse.

Then it hit me. This past winter (I live in a warm climate), I had a rash under my armpit. It was a well-defined bullseye rash. I also remember seeing a "blood blister" under my armpit (now I think it was the true lyme tick). I had some leftover doxy. I started taking it 7 days ago (the first time I took it with a zinc supplement which lowers doxy effectiveness). This time, I took it correctly. I felt crappy for a few days, but lately I've been feeling much better. My "fog" has lifted. My skips have minimized. I am convinced I have Lyme Disease. The only other option is that I have had a total system failure including neurological (light sensitivity and ocular migraines) and cardiac involvement. This does not seem likely.

There are a few other points to mention. First, I also have symptoms of orthostatic intolerance (my pulse rises 50 bpm when I stand up and stand still (another lyme symptom). Second, during this time, I also saw my gastro, who ran a test for a one in a million cancer that tested positive. This caused lots of anxiety, of course. I retested and it was negative (isn't medicine great). Third, I've had every test in the book including pelvic, abdominal, and brain CTs, an abdominal MRI, thyroid test and scan, and I have a brain MRI coming up.

I'm going to see my ID doc next week. I plan to tell him all of this and hope to convince him to treat me with add'l antibiotics despite the neg West Blot. Is this a wise decision? I do not have an LLMD within three hours of me, so this is my best option.

What do you think about this approach. Is it worth trying to "educate" an ID doc about the unreliability of the Western Blot. Am I going to have to "convince" him despite my overwhelming clinical presentation?

flowergal
Regular Member


Date Joined Sep 2011
Total Posts : 377
   Posted 9/27/2011 8:10 PM (GMT -6)   
I share your pain with the multiple tests etc. I have also been through the ringer in the last few months. Had a scan of my brain looking for a brain tumor, finding two aneurysms instead, then the next scan showed nothing! Anyway if I were you I would print out a timeline with a list of your symptoms, tests taken etc and bring a printed description information regarding Lyme for your doctor. I hope he would weigh the risks and opt to be pro active. Especially when most literature and studies I have read show there is no definitive test for Lyme. It has to be also include a clinical diagnosis.

I myself have a "positive" test and yet am still told by doctors locally that I don't have a positive "enough" test for Lyme. Yet I present with all the symptoms, garden as a hobby, had a bite behind my ear and have had Lyme before in 1988. In '88 I had to do lots of research which I presented to my doctor who treated me for a month to be proactive and my symptoms went away for years. It's not like you are trying to get drugs to sell on the street! You are trying to get well. I had to leave my state to find a doctor who understands this disease and I pay out of pocket and drive three hours once a month to see him. I am starting to see improvement, having more "good" days.

Hang in there and bring documentation for your doctor, after all, most doctors don't specialize in Lyme and it is a very confusing disease with so many symptoms.

Lots of luck.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2049
   Posted 9/27/2011 8:39 PM (GMT -6)   
I seriously would consider going directly to LLMD now rather than wait. I did the ID thing and it was a waste of time. I feel I got worse not only from the disease while being mistreated but from the stress in being told I probably had lyme AND MS and he also kept testing me for syphillus since I wasn't getting better. When I started with burning facial pain and presented with lesions on my brain, he sent me to a neurologist who also knew nothing about lyme. I go to a wonderful LLMD who is always learning about this baffling disease. Most LLMDs will treat with supplements as well as antibiotics. There is so many facets of this disease and what it does to the body. A whole body approach is really the way to go. BTW I am also an avid gardener and presented first with stabbing chest pains and severe anxiety. I travel about an hour to my LLMD but now that my husband and son have also been diagnosed, we spend quite a bit of time in the car travelling but are getting well so it is well worth it. Best of luck to you.
Co-Moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: roxythyromycin, bactrim, doryx, amanatadine, neurontin, cymbalta Prior meds: amox, minocycline, tetracy. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes

Cat111
Veteran Member


Date Joined Nov 2010
Total Posts : 571
   Posted 9/28/2011 7:03 AM (GMT -6)   
The ID doc might be immediately sympathetic to a Lyme diagnosis for you and prescribe antibiotics on the spot. But they do follow the CDC guidelines and will only treat with low dose antibiotics for a short duration.

I went this route (wish I hadn't in hindsight) but it could be a could start for you until you can get in to see an LLMD who will treat you correctly.

IMO some antibiotics are better than none (just as a start) when you suspect Lyme. But DO make the effort to see an LLMD ASAP....and skip the ID if you can.

If you must see an ID doc.....and he/she wants to put you through the ringer of testing for everything other than Lyme and does not prescibe ANY antibiotics for (possible) Lyme in the meantime, then I would--- and this is just my opinion-- run the other way! And go straight to an LLMD.

It's next to impossible (IMO) to educate an ID doctor-- for all the obvious reasons. They already have their CDC agenda and will, more often than not, be very conservative in their treatment of Lyme.

Best of luck to you! :)))
Doxy, Amoxicillin, Azithromax, Mepron--now Ceftin. 11 months of treatment and counting.

achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2421
   Posted 9/28/2011 7:32 AM (GMT -6)   
Hello, tickled!

Welcome to the forum!

I totally agree with the previous posters: Yes, try to get some continued treatment from your ID doctor, it's well worth the effort. While you are there you could ask the ID doctor what their treatment protocol is and do they know about the co-infections that go along with Lyme.

Most important to ask, do they treat beyond the cessation of symptoms? ID doctors usually will only treat 4 - 14 weeks and then declare you "cured" and tell you you will have to just live with the remaining symptoms. There are exceptions to this generality, so it's worth asking.

For a successful return to complete health, however, you will need treatment from an ILADS certified Lyme Literate Doctor. I know it is a far piece to travel but it is worth every minute. Many of our members here travel farther. Some doctors will work with you to make that easier; doing phone consults and meeting every other month, for example.

In the meantime, if you haven't had a chance to read the "New to Lyme?..." thread at the top of the forum, please take a look. It has many tips and links that you will find very useful.

Well, keep us posted on your progress!
Co-Moderator Lyme Disease Forum

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14096
   Posted 9/28/2011 10:37 AM (GMT -6)   
HI Tickled!
Welcome to our forum! I am so sorry that you even have a need to be here, but we are sure glad you found us!!!

As Achievinggrace has said, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

I really would waste what energy you still have on trying to convince an ID doc to treat you properly. If you really think that s/he would want to treat you using ILADS (International Lyme and Associated Diseases Society) recommendations, then call him/her on the phone and ask what protocol s/he would use if a person did have Lyme. That'll tell you if you should even think about keeping your appt next week. If s/he doesn't treat following ILADS recommendations, then do run the other way!! You can find the ILADS recommendation here: www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

And here's why we generally say not to waste your time or money on an ID doc - although there are always exceptions to the rule! - archinte.ama-assn.org/cgi/content/abstract/171/1/18

I feel that you could most likely have chronic Lyme by now, and ID docs rarely acknowledge that chronic Lyme exists, and you will need to have a doc that really understands these infections in order to be able to eradicate them
from your body. Lyme Disease is very good at avoiding detection once it gets into the tissues and organs.

Something else that you should be aware of is the issues of co-infections. Although it happens, it's not all that common of a thing for a person to have just Lyme Disease, as it likes to have friends to travel with. You need to see a doc that not only is willing to diagnose you clinically (as per the CDC), but knows what the heck they are looking at when seeing all of those symptoms!

Do you need help in locating a LLMD?
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

tickled
New Member


Date Joined Sep 2011
Total Posts : 8
   Posted 9/28/2011 1:37 PM (GMT -6)   
Thank you all for your responses. I'm going to try with this ID. He did treat me while my WB was pending, so he must be a little progressive. If anyone knows of a good LLMD in NW Florida, please let me know.

achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2421
   Posted 9/28/2011 1:44 PM (GMT -6)   
Tickled,

The best way to a recommendation for an LLMD is to start a new thread entitled "Looking for LLMD in NW Florida.

Good luck and keep us posted!
Co-Moderator Lyme Disease Forum

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14096
   Posted 9/28/2011 3:11 PM (GMT -6)   
Sorry we are so cynical about ID docs here! We have watched as member after member who have gone to ID docs get burned in one way or another. There are a few here that have gotten the care they need, but only a few.

There are actually quite a few ID docs that will start people on abx, it's just they don't usually continue them for any longer than 14 to 28 days. If you read the article by Joseph Burrascano titled "Advanced Topics in Lyme Disease" you will have a good understanding of what most LLMD's kind of go by. It's recommended reading for members and LLMD's as well as those docs who want to become LLMD's. There is a link to the article in our "New to Lyme?" thread, but I'll addd it here as well: Dr. Burrascano's diagnostic hints and treatment guidelines for Lyme and other Tick Borne Illnesses:

betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf

I would suggest that you go ahead and look at other possible docs - that way if you need to switch, you won't be caught 'flat footed'.

Besides what Achievinggrace has suggested- which is a good suggestion as our members are our greatest resource, here are some other some other places to help in your search: please email our long time member, Dan's Mother at:phassan@optonline.net

You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Be sure to let us know how your next appt goes!!!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

tickled
New Member


Date Joined Sep 2011
Total Posts : 8
   Posted 10/5/2011 9:58 AM (GMT -6)   
Thanks again to all for your advice. I just got back from the ID. He told me that he did not think I had Lyme because my WB showed no positive bands. Nonetheless, because the abx were making me feel better, he gave me 60 more days on them (after my prodding). My question is, does anyone think he's correct. If I show no bands on a non-Igenex WB, is Lyme out of the question. Thanks to all for your input and helping me get through this.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2049
   Posted 10/5/2011 10:13 AM (GMT -6)   
My husband had no bands nor did he have a "strong" positive through Igenex, but a positive it was. He did test positive for babesia and anaplamosis also. If your body does not or has not yet produced antibiotics to the lyme infection, bands will not show up. In addition, for an example as to why regular lab western blot are unreliable, certain bands were removed from the western blot because they would interfere with the lyme vaccine. In other words, they are the part of the lyme bacteria that were used to create the lyme vaccine. Silly right? Anyway what I'm trying to say is the controversy surrounding the diagnosis and treatment of this disease is as complex as the disease. Hope you find an LLMD in your area.
Co-Moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: roxythyromycin, bactrim, doryx, amanatadine, neurontin, cymbalta Prior meds: amox, minocycline, tetracy. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14096
   Posted 10/6/2011 11:58 AM (GMT -6)   
You should look into how many strains there are for each of the tick-borne infections and how many are being tested for. That will convince you that it's much, much easier to test negative on a blood test even though you have a TBI.

Lyme Disease has three strains that are being tested for - out of the 300 that can be found world wide and the 100 that have been documented as being in the US.

Bartonella is believed to have any where from 26 to 36 different strains here in the US - only one or two are tested for.

Babesia has over 100 different strains and we can only test for 2 or 3 of those.

So you can see that it's pretty easy to have one of these infections and still not test positive on a blood test. That doesn't even take into consideration the fact that Lyme can literally hide from the body as well as the abx. They have a "cloaking" phase that they can go into - called "cell wall deficient" or 'L' form. With out that cell wall, the body doesn't recognize it as being anything!

You should read what the "Archives of Internal Medicine" has to say about ID doc's practice guidelines; archinte.ama-assn.org/cgi/content/abstract/171/1/18
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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