Just found out I have active lyme disease. I am stunned. Help!

[Mog]

Here is the test:

http://www.truehealthlabs.com/th1-th2-cytokine-test-advanced/

Ema

Great, many thanks Ema.

 

[roxie60]

http://www.cdc.gov/lyme/stats/

Cant believe the statistics the CDC posts is nearly three years behind. You would think they could redirect some of the taxes we have paid from the narcissistic politically power hungry heads of the CDC to providing up to date data. There is no reason except pure laziness and ineptitude to have data published publicly that is more than 6 months old. When the govy demands corporations be compliant with govy edicts companies are lucky sometimes to have 3 months to implement mandates. Another example of complete embarrassment and incompetence from a govy managed organization. In the real world the rest of us have to live in a company would have to close its doors if they could not update data from all its branches in less than a month (usually has to be updated daily).

I looked up the CDC map for Lyme, now I understand why doctors in Illinois typically wont test someone unless they have been sick for years and all else has been ruled out. Because they are told that people in Illinois just are not in an area / region that has Lyme. REALLY, its the 21st century, a very mobile society, I personally have been in 40 states in the union. I just want to pull my hair out when I hear such blind stupidity.

http://www.cdc.gov/lyme/stats/maps/map2011.html

CDC says 13 states have 95% of Lyme cases, I have been to at least 8 of the 13. Of course this data is 3 years old so who really knows the prevalence.

 

[cigana]

The Lyme people at the CDC are only interested in furthering their own personal and financial agendas. I would recommend the book Cure Unkown by Pamela Weintraub, this will give some real education on the subject.

 

[roxie60]

Very technical but I think very good medical info on this disease. First of 3 videos by Cr McDonald. Amazing, info has been known about this since 1987 and we still have typically one test kit (ELISA/WB), looking for one variety of bacteria that was never in a human being. How irresponsible, borders on criminal IMO

Part I

 

[roxie60]

Part II Dr Alan MacDonald

This guy is telling it like it is, those in power have no practical experience with identifying Lym disease, creating appropriate testing standards. Amazing points this guy makes which makes me concerned for those of us trying to get answers, the testing is inadequate but we are spending countless dollars trying to determine what we have and there is a large chance of being misdiagnosed due to the test kit being inadequate. F-in criminal.

 

[roxie60]

Part III - Dr Alan MacDonald

 

[roxie60]

For those who have been diagnosed with Lyme disease I'm curious what you think of this article. I cant find the publish date but there is a revised date of 1/2013. I am confused right now on the right course of action regarding possible chronic Lyme (if there is such a thing). I read comments that testing really is not that reliable in dxing Lyme but the tests are very expensive. But the 'system' seems to require more testing. Then it is not clear the best course of treatment. Just confused as to how to plan my next steps with this new info (CD57 indicates Lyme).

http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html

 

[Lymelight]

Well, you'll find plenty of those articles on the net as Lyme disease remains very controversial. If you listen to doctors associated with ILADS you will ear a totally other story.

At the end of the day, only the future will tell who was right ...

In the meantime, we are sick and desperately seeking for any means to get better.

For me the most important thing is to find a doctor (or other therapist) that I can trust.
Most of the doctors I've met either had the honesty to tell me that they had no clue or did tell me things that made no sense.
Even worse, the neurologist I saw a few years ago when I had a facial paralysis, never considered nor mentioned a possible borreliosis, while I had all the 'official' symptoms of it. Instead of testing me for it he prescribed corticosteroids that probably did worse.

Whatever I can read, I'm now in a situation where I found a doctor that made a diagnose that makes sense for me, that explains all symptoms I had for years, that is confirmed not only by a positive borrelia testing but also by numerous other tests showing a general inflammation state in my body.
He gives me also a treatment (oral ABX and supplements) that showed encouraging results on a high percentage of his patients.


Again, only the future will tell if I will be better (or cured ?) by this treatment, but for the moment I haven't find a valid alternative.

 

[Creekee]

For those who have been diagnosed with Lyme disease I'm curious what you think of this article. I cant find the publish date but there is a revised date of 1/2013. I am confused right now on the right course of action regarding possible chronic Lyme (if there is such a thing). I read comments that testing really is not that reliable in dxing Lyme but the tests are very expensive. But the 'system' seems to require more testing. Then it is not clear the best course of treatment. Just confused as to how to plan my next steps with this new info (CD57 indicates Lyme).

http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html

Hi roxie60,

So sorry you're having to deal with this. It's a long and complicated road, for sure.

Regarding Quackwatch: this is not the first time I have found this site to be misinformed and biased. Just my opinion, of course. Any time I come across something like this (copied from middle of the article):

the drug-seeking behaviors of self-described chronic Lyme patients

All my red flags get raised. I think this would be more accurate, and less indicative of bias, if it said "health-seeking behaviors" or "cure-seeking behaviors." To me, it's a huge glimpse of a personal agenda that has nothing to do with my health. Or protection.

I'd much rather see you reading something like this:

http://www.dearpharmacist.com/2013/06/11/lyme-disease-and-bartonella-more-common-than-you-think/

Again, only my opinion. As an always-researching cootie carrier!

Sending you lots of healing vibrations, roxie!

 

[roxie60]

Thx Creekee the article did not set well with me but I could not put my finger on why, that statement definitely got my attention...reminded me of all the horrible comments made by medical staff and 'well meaning' or 'not so well meaning' folks. I appreciate the info and your perspective.

 

[Mog]

Are IV antibiotics to be preferred over oral abx for treatment in late-stage Lyme?

 

[Ema]

Are IV antibiotics to be preferred over oral abx for treatment in late-stage Lyme?

Not necessarily. Orals can be very effective and carry fewer risks than having a port installed. It all depends on the response to the meds.

Ema

 

[roxie60]

Awesome article CreeKee, thank you. She understands what many of us have be fighting for years and she is a physician saying hang on there is help. Thanks for posting this link.

Hi roxie60,

So sorry you're having to deal with this. It's a long and complicated road, for sure.

Regarding Quackwatch: this is not the first time I have found this site to be misinformed and biased. Just my opinion, of course. Any time I come across something like this (copied from middle of the article):

the drug-seeking behaviors of self-described chronic Lyme patients

All my red flags get raised. I think this would be more accurate, and less indicative of bias, if it said "health-seeking behaviors" or "cure-seeking behaviors." To me, it's a huge glimpse of a personal agenda that has nothing to do with my health. Or protection.

I'd much rather see you reading something like this:

http://www.dearpharmacist.com/2013/06/11/lyme-disease-and-bartonella-more-common-than-you-think/

Again, only my opinion. As an always-researching cootie carrier!

Sending you lots of healing vibrations, roxie!

 

[roxie60]

One video that CreeKee's article referenced brought tears to my eyes cause I could relate to many of the issues, I'm sure others can also relate. This has been a maddening experience, breaks so many hearts and spirits.

 

[Xandoff]

I was just tested last week for Lyme. My Doctor ordered sent the blood work to IGENEX Labs in Palo Alto California for test # 5085 New Western Regional Complete Co-infection Panel which tests for:

1. • • • • Babesia duncani, IgG& IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Baratonella IgG & IgM, Bartonella FISH
         • Wise to do as this test as many coinfections mimic lyme, and many ticks that carry lyme also carry multiple other coinfections.
         • IGeneX Cost: $780

1. 
   I was also tested for the Western Lyme Blot IgM (#188) and Lyme Western Blot IgG (#189) for a total cost of $980.00. I will be posting a link to 45 minute video by Dr Richard Horowitz who says the co-infections are worse than the Lyme. You can actually have co-infections and no Lyme Disease. It is the co-infections that are causinmg all my pain. I heard from at least 20 people on a Lyme website that have the same chronic pain that I do. My Doctor says that even without the testing that my symptoms are enough of a clinical diagnosis. I*f so, I have had Lyme for at least ten years so it is chronic. I cant wait to get the results.

 

[atoska]

Hi @Xandoff!
I also got tested for lyme through igenex two weeks ago. I am still waiting for the results cause I live in Spain and they had to send the results by normal mail. I am so nervous! I can't wait to see the results. I have already been diagnosed by Kenny DeMeirleir through infectolabs in Germany, but I don't know why... I don't totally trust that way of testing for lyme... But I do trust igenex.
Please share your results!
What are your symptoms? I am curious since your doctor told you you could be diagnosed clinically.. Are they typical cfs symptoms? Are they a little different? Do you have PEM? D you have muscle pain? Joint pain?
I really hope your results are positive and that you find your healing path.
Hugs

 

[*GG*]

I was just tested last week for Lyme. My Doctor ordered sent the blood work to IGENEX Labs in Palo Alto California for test # 5085 New Western Regional Complete Co-infection Panel which tests for:

1. 
   
   
   • • • • • Babesia duncani, IgG& IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Baratonella IgG & IgM, Bartonella FISH
           • Wise to do as this test as many coinfections mimic lyme, and many ticks that carry lyme also carry multiple other coinfections.
           • IGeneX Cost: $780

1. 
   
   
   • 
     I was also tested for the Western Lyme Blot IgM (#188) and Lyme Western Blot IgG (#189) for a total cost of $980.00. I will be posting a link to 45 minute video by Dr Richard Horowitz who says the co-infections are worse than the Lyme. You can actually have co-infections and no Lyme Disease. It is the co-infections that are causinmg all my pain. I heard from at least 20 people on a Lyme website that have the same chronic pain that I do. My Doctor says that even without the testing that my symptoms are enough of a clinical diagnosis. I*f so, I have had Lyme for at least ten years so it is chronic. I cant wait to get the results.

Sorry to hear about this, I was thinking that the Lyme is why your pain is so bad upon first reading this, I see you think the same thing also. Hope you get better soon!

GG

@Xandoff Where do you think you caught this? Where you live now?

 

[Daffodil]

I think Dr. Burrascano reported that people who start with IV generally do better than those who do orals before IV

 

[Xandoff]

Sorry to hear about this, I was thinking that the Lyme is why your pain is so bad upon first reading this, I see you think the same thing also. Hope you get better soon!

GG

@Xandoff Where do you think you caught this? Where you live now?

I think I caught it in CT over ten years ago but LYME is everywhere, read my short blog that I put up today. You can actually have a Lyme co-infection without having Lyme disease. The co-infections are worse than the Lyme and the babesia that I have just makes everything ten times as bad. I know you deal with chronic pain. If I were you I would get a new Lyme test through Igenex, the western blot are 100 a piece, one test for a past infection and one test for a current infection. Mine was for a past infection. Massachusetts is loaded with Lyme Disease. The babesia on top of the Lyme is what cause my chronic pain. The old Lyme test that I had in 2006 and 2008 only pick up 45% of the people who actually have LYME. The new Igenex tests are the only way to go. Good Luck!

 

[pspa123]

So here is what I don't understand about the alleged conspiracy to ignore chronic Lyme. Usually, conspiracy theories are about money -- big pharma has coopted the government to promote drugs, vaccines, etc. But here, the usual treatment for chronic Lyme is long-term drugs, with lots of doctors' visits, tests, etc. So what's the motive for the mainstream medicine/CDC conspiracy here?

One of my pet peeves with doctors of all sorts is confirmation bias. Put another way, to someone with a hammer, everything looks like a nail. I have seen this repeatedly in all sorts of medical settings. One of the reasons I have been reluctant to see a so-called LLD is my assumption that they will diagnose anyone with significant symptoms on the spectrum (which is a near-universal list as far as I can tell, and virtually identical to a host of other syndromes and conditions) with Lyme, even if all testing is negative. (Parenthetically, despite the oft-repeated mantra of the chronic Lyme community that Lyme is a clinical diagnosis, I observe that self-designated experts on internet forums are very quick to tell people "You have Lyme" on the basis of no history, physical exam, etc.) Perhaps this is irrational but I have grave doubts anyone can or will be objective, particularly in the highly politicized climate. Tens of millions of people have pain and fatigue. Surely they don't all have Lyme?

All that said, if anyone has any solid information about what symptom constellation -- in the absence of any history of tick bite or acute onset illness -- is truly indicative of chronic Lyme, I would be interested. Thanks.