Lymes a conspiracy??

[ticked]

I feel like I have just dug into a serious conspiracy however my mother just thinks I have lost my mind as per usual.

I called the "doctor in Canada" and he has not been taking Lymes patients for over 3 months and I was seriously pushed off the phone and every question I asked was like it was a tape recorder as if she was told to say the things she was saying. She did however tell me to call Toronto General Hospital for Tropical Disease, they dismissed me quite quick and pretty much said there was no one in Canada to see for lymes.

Okay so that is JUST great, I finally feel that after 17yrs of suffering I was getting somewhere, some new leads as to what is wrong with me and now I need to try to see if my doctor will even sign off on the igenex kit and what happens after that. What if it is positive, what test do I ask to have done, I seriously feel like I have been put through the ringer and its so wrong.

Here is my life in a nutshell can you really tell me that I dont have it??


1977-Born Jaundice
1984-Surgery for intestinal Volvulus
1987-Started to get headaches on a daily basis, planters warts
1989-Diagnosed with Osgoodschlatter
1996-Jaw surgery /Shattered articulating disc in left side, diagnosed with Ringworm, warts on fingers and toes.
1996-Diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Chronic Pain, Restless Leg Syndrome, Thoracic outlet syndrome, Mild Scoliosis, IBS, Chronic Yeast infections, Chronic Sinusitis, Aura Migraines, TMJ Depression
2005-Diagnosed with Cluster Migraines, and Sciatica
2007-Diagnosed with reflux, Stage IV Endometriosis, Complicated Migraines, Bulimia, Binge eating, and interstitial cystitis.
2009-Diagnosed with Hypoglycemia, Contact Dermatitis, PID, Friable Cervix, and Low Iron,
2011-Diagnosed with Generalized anxiety-Fear of death and obsession to my health, Mild Dysplasia of the cervix


Symptoms I have had over the years;

• Flu like symptoms with patchy cold and warm spots on skin, usually the arms, legs, stomach , back, face and head. (still have since the beginning)
• Meniere’s symptoms with Vertigo (comes and goes)-buzzing/vibration in right ear
• Severe Sensitivity to touch, sound, and smell (still have since the beginning) easily startled, sensitivity to light, no one can touch or rub my skin, I am cold all the time even when its hot.
• Extremely itchy toes (presently for the past year) and very itchy skin
• Vaginal and Anal fissures (presently for the past year)
• Nausea on and off.
• White spots on legs-
• Pain down my arms, legs –Nerve like pain
• Peripheral Neuropathy-(still have since the beginning)
• Tremors
• Electric shocks to the head and wrists (comes and goes)
• Visual issues in the right eye, floating things (hasn’t happened in a while) right eye gets very heavy and droopy for no reason.
• Right side of body is more affected by whatever it is I have
• Muscle and joint pain (Still have since the beginning)- muscle weakness, exercise makes it worse.
• Random red dots on skin
• Bowel pain (Have had since 15yrs old)-chronic constipation
• Chronic inflammation of the pelvic region
• Urinary frequency and pain
• Pain in spine and lower back
• Insomnia
• Cyst inside tip of nose
• Irritiablity
• Urine cultures for my daughter and I always show bacteria but nothing ever comes up on the cultures.
• No ambition at all not even to play with my daughter.
• Irregular heart beat
• Extreme Pain in feet when waking up (have it less now than I did)

[JackieCalifornia]

I hear you.  Feeling lousy, not knowing why, and not having docs who on top of things or are simply stubborn -- it all conspires to make us feel frightened and hopeless.  Partly it's the infection(s) affecting brain and emotional chemistry, and partly it's the rational part of our brains telling us these dorks who are supposed to be soooo smart just aren't, but we have to rely on them.  A perfect storm.  

Take heart and know that you are making progress -- it was a long road for me and other here too -- but definitely worth the journey.  Hold fast!  I would sometimes visualize my immune system rallying in battle and slaying the bad bugz, and planting flag of victory on the hilltop.  Whatever symbolizes that struggle AND victory for you.  For some it's prayer and meditation; for me, it's a good old-fashioned mental/emotional bug-bashing.

[ticked]

Thanks its been a very long journey.

[JackieCalifornia]

Isn't it amazing that docs have such fixed beliefs about what is possible and what is not, never mind what the person sitting in front of them says!  Good for you for pursuing what seems right and necessary.

[ticked]

Yes she will give me a copy of my report if I ask. In Canada they have to give it to you if you ask.

She is just a none believer in stuff like that. Even food intolerances. I asked to be sent to get them done and she refused. I went to a holistic doctor and was told I had dairy, spelt and wheat intolerances.

[JackieCalifornia]

I agree with Ricobord.  And I think you are entitled by law to get copies of all the test results, at least in California.  Why would a doc refuse, after all.  I get copies of all test results and always keep my own set for future reference.

[Ricobord]

IGeneX requires a doctor's authorization in order to do the tests and they will only send the results to that doctor.  CDC regulations.

Just make sure that the doctor who signs the authorization is willing to show you IGeneX's results, not just say 'positive' or 'negative'.

If you've been sick for years, be prepared that you might test negative, as over time, the body stops making enough antibodies to be picked up in the standard tests.  That's why you need to see someone who knows Lyme well.

Good luck!!

[JackieCalifornia]

Scroll up to the top of this webpage; in the upper right corner click on 'inbox', then click on 'compose'

[delstar2468]

how do i pm??

[ticked]

Thanks I will look into that

[nutrinut_bob]

Your symptoms sound a lot like Lyme to me.  If you go to lymenet,org and register on the flash discussion, you can then post in the seeking a doctor thread.  People will be answering you very quick.  I looked to see where you're at, and one of the people who answered me pointed me to the Cleveland Clinic, which isn't too far for you, but there might be someone closer.

[JackieCalifornia]

You've been through the ringer, it sounds.  What's important is that you are not giving up.

I am of two minds about ordering up the IgeneX test oneself, without a knowledgeable doc to read the results AND understand them -- there are many docs who think IGeneX is quackery and will not put any weight on the results, so even if you get a positive and walk into a doc's office in Canada, you may not get a warm reception.

The IGeneX tests are not cheap, either.

And a further complication is that a knowledgeable doc will know from your symptoms and history what OTHER diseases to test for that the Lyme ticks also carry ~ half the time.  This is not a do-it-yourself project, tho I do understand you appear to be getting the brush off from the government medicine people in Canada and are trying to do something constructive.

[Note to those in the US who are looking forward to cheap medical care run by the government:  you get what you pay for, and when you don't have a choice where to go, you're stuck with what you get.]

==>> have you looked at the CanLyme website for leads to friendly docs?  there are also Lyme groups in various provinces that can be found online by a simple search.  Again:  MDs have trouble diagnosing and treating Lyme and its coinfections, even the ones who are Lyme specialists, so this is definitely not a do it yourself project.

Sorry to be a wet blanket, but hate to see you spend time and money and energy following a course that may not be productive.

Important thing:  don't give up.  Take the list you wrote out above to you when you see a Lyme doc, so that s/he can see what you have been experiencing.  It is hard to get a lot of info across in a short appointment when one has many symptoms over many years -- but the doc needs to have that information.  

Let us know if we can help, but first thing I would do is go search for a Lyme MD or Lyme patient group in your province or wherever you can get to.