posted
So according to the CDC (and my doctors), every tick that bites me has given me a NEW case of Lyme disease. I think that is garbage.
I contracted Lyme in April 2013 (saw the tick and immediately had symptoms but didn't get treated fast enough, I guess). Since then, I've been bit twice: once in TX by a Lone Star tick and then in NJ last month by 9 Lone Star ticks. None were attached very long (did thorough tick check each night) and I actually brought the latest pile to an expert who said that there is NO WAY that any of the 9 had given me Lyme (not attached long enough and none had take a blood meal).
AND yet, less than a week after the bite, the Lyme symptoms were raging and my IGM test was positive.
Doesn't it make sense that if you were a bacteria moved around by a vector that you'd have some form of communication with that vector? In other words, when the tick bites you, it signals any Borrelia to wake up and come aboard. I've tried to find threads about this topic but perhaps I'm not searching for the right times.
Anyone have any thoughts about this?
-------------------- Positive Western Blot IGM - First in 2013; most recently June 2015. IGG always negative but bands 41,45,58,66 positive. Posts: 14 | From Florida | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I don't believe a tick has to take a blood meal in order to transmit lyme disease to you. Just being bitten is enough. There is no set time (like 24 or 48 hours) that the tick must be attached.
You see, the germs are in its saliva. And, it is shooting various chemicals into you as soon as it begins to attach--so that you don't feel it when it drills its mouthparts into you, etc.
I got bitten on my upper arm about 7 years ago and I know that the tick was not attached for any length of time at all. I would have easily see it.
I know when it got on me and I got the rash a few days later. There is absolutely no way that the tick that caused that case of lyme was on me for hours. No way. I got to my lyme doc and got treated for 30 days and was done.
So, that was the second time I have gotten lyme and gotten rid of it. I have been symptom free all of these years.
I believe you have been talking to all of the wrong people all of this time. For example, ID docs are NOT the docs who understand lyme and how to treat it. And, the CDC is also not a good source of information regarding lyme disease.
So, the reason you didn't get well yet is because you have been going to the "wrong camp" when it comes to lyme disease.
You need to get to a doctor who specializes in treating lyme disease. Such a doctor treats only lyme disease in his practice, or 95% lyme disease.
Generally, these lyme specialists are doctors who have had lyme disease and learned that the IDSA (Infectious Diseases Society of America) guidelines for treating lyme disease don't work.
They then seek out others for info on lyme and join the other camp--the ILADS (International Lyme and Associated Diseases Society) and develop real expertise in killing this complex disease.
I didn't get rid of lyme until I went to a doc who followed the Burrascano Guidelines found here:
As he says on page 3, "undertreated infections will inevitably resurface" and that is what happens until you get to a real lyme specialist.
Also, it would be wise if you avoided getting ticks on you in future. For example, how did you get 9 Lone Star ticks on you?
Checking for ticks each night is just not sufficient. I hope you learned this from your recent NJ experience and subsequent symptom flare. Instead, since it seems that you are one of the folks who attract ticks, you are going to have to adjust your lifestyle to avoid going where ticks are.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
And, here is a summary of the Burrascano lyme treatment protocol for your information:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease specialty lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
Most people need only oral antibiotics. Only a few need to go on IV antibiotics.
I and my friends all got rid of lyme and company on orals only. All of us had lyme, babesiosis, and bartonella. Every person in Maryland who has lyme disease has at least these 3.
So, I doubt you only have lyme disease. You will never get rid of the lyme until you are tested for all of the other diseases ticks transmit and get treated for all that you have.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto. TF really knows what she's talking about.
For starters, it's a ridiculous myth that a tick has to be attached for any number of hours, or even minutes. Once the skin is punctured by a tick's mouth parts, infection can be on its way to every inch - every system - of one's body.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
posted
Hmmm. OK. I think I didn't explain myself well enough. As a sufferer for 2 years, I've read all of the items that you posted and defintely don't listen to the CDC for anything. I go to a ID dr because you try to find an LLMD in south Florida. There ain't one. My question is about a tick-bite ACTIVATING Lyme that has gone dormant in the body. I actually collected the last ticks attached to me and had them analyzed. None had Borrelia. If they didn't have Borrelia (they were actually Lone Star ticks-not Ixodes...not that it matters because I think they can still spread Lyme), why would my IGM be positive unless it was reactivated?? Does that make sense?
-------------------- Positive Western Blot IGM - First in 2013; most recently June 2015. IGG always negative but bands 41,45,58,66 positive. Posts: 14 | From Florida | Registered: Jul 2015
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posted
There are many reports of Lyme patients who stay IgM positive, or revert back to IgM positive, with the same singular infection. They don't convert to IgG's when it is deemed by some that they should.
CDC doesn't buy into that, but, eh.
A theory to explain this phenomenon would be constantly shifting outer surface proteins that fool the immune system into thinking it is a new infection, over and over and over.
First line of defense with new infections? IgM's.
Posts: 228 | From Unitied States | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I haven't had lyme for 7 years and my IgM is still positive.
The Western Blot is looking for antibodies. Your immune system doesn't stop making them right away.
Also, there are folks here who had their ticks analyzed and were told that the tick didn't have lyme and still the person got lyme.
So, the tests are NOT reliable.
So, no need to speculate about a tick bite activating dormant lyme as you call it. If the immune system is able to keep lyme in check so that you don't have symptoms, I guess you could call that "dormant lyme."
Then, you get bit again and the germ load is now more than the immune system can handle and your symptoms come out again.
So, I would not focus on tests. I would say that you got bitten again and got lyme again. Period.
The lyme bacteria don't need to get a signal to "wake up." They can stay in cyst form until they sense no more antibiotics in the blood stream and then they come out of cyst form and cause symptoms again.
Or, they can take advantage of times when the immune system is weak--like after surgery, or after you take steroids, or in times of great illness--and they then overpower the immune system and your symptoms are back.
Lots of scenarios like that.
I agree that in Florida it is impossible to find a good lyme specialist. I suggest you be willing to travel up my way and get Burrascano style treatment. After the first in-person visit, you can do telephone or Skype appointments each month.
Otherwise, you will likely continue to have lyme.
The doc I recommend can see you in a few days.
And, Lone Star ticks can carry lyme as well as other types of ticks. The old rules no longer apply. Or, you could have gotten a lyme-like illness from them and also overwhelmed your immune system in the process.
You might be interested in the discussion on this thread.
posted
Do Lone Star ticks also transmit Lyme? I thought it was only deer ticks.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes. Here is a good thread on that. It also includes comments by folks who were bitten very briefly and got lyme and other diseases from those bites:
posted
The safer answer that some argue is that Lone Star ticks appear to transmit Borrelia, but, according to the CDC, not Borrelia Burgdorferi.I don't think the CDC will even admit there is definitive proof a spirochete is always involved in the infection transmitted by the Lone Star tick (Amblyomma americanum).
So,instead of a formal label of Lyme, you have Masters' disease, after its chief proponent, or the CDC's preferred name: STARI. But, officially speaking, not Lyme.
Regardless of the CDC's position, many just believe it's an unusual strain of Bb, or perhaps a different species than sensu stricto.
Posts: 228 | From Unitied States | Registered: Jul 2015
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posted
Oops, sorry TF, I was writing (slowly) as you posted. I am still learning this Forum's protocol.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Any tick that bites a critter that has a transmissible infection can transmit that particular infection (or particular multiple infections) to another being via its bite.
They are transmitters of whatever they suck in form one and then go to wipe, spit, gurgle or vomit as they partake of their next meal.
Good that you bring up STARI, though, as there are many strain of borrelia and most are not considered. Still, any tick can transmit any infection.
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Duncan,
no worries. That happens a lot, actually and some may not even see a posted reply until another day. I usually alter my replies a few times before I come close to what I'm trying to say.
Do not believe what you read from the CDC about transmission of tick-borne infections. Better sources:
I take what the CDC/IDSA/NIH/HarvardYaleJohnshopkins say with a grain of salt, always. Always.
When I answer questions, however, I try to state the conventional or Govt stance, as well as mine or ILADS because whoever I answer may be going to see a clinician the next day. They need to know the difference.
Can you imagine the response an IDSA stalwart would say to Lone Star transmitting Lyme? The patient would be told "No Lyme for you."
This way, they anticipate that response, while knowing that IDSA-prompted diagnosis may be in error.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good point and one that I did "see" but could not verbalize with searing fingertips. Welcome to our site. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Like your fingertips, my brain is searing. But I am glad to have posted here finally.
Searing brains make for incoherent sentences sometimes; I hope I have made sense.
Lights out before I begin rambling.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Lepid, dr. K. does say that a new bite can call older infections to re-activate.
My own lyme dr. has a way to test, whether the infection is from old tick bites or a brand new infection from a new bite. He said new infections are usually pretty aggressive.
I had MULTIPLE bites, and still have. I get bitten on and on. I can get easily 10 bites a year. My daughter too.
We both had 2 strains of borrelia (burdg and garini). I SUPPOSE they may have come from different bites. We needed different treatments for each.
Dr. K. says that borrelia can send chemical signals to wake up dormant (cysts) so that they, TOGETHER, act synergistically to win against you, the host.
Borrelia also can signal to coinfections: they work wonderfully well together. Take away borrelia, and each coinfection has a much harder time to survive!
We could go to remission many times, but at every new infected bite (with borrelia, usually), all OLD infections sort of show up: mycoplasma, babesia, bartonela, ehrlichia etc. Even though they were dormant before.
Of course, they could have come from the new infection, but I find it funny that this pattern repeats, on and on, for each new bite. It's like a new borrelia coming calls up all 'friends' to help them dominate the host....
some awakened infections can be treated fast and put dormant, I find. New infections behave very aggressively, and it takes us longer to put them dormant again.
I've been reading here for years. You can clearly see how hard times people have on a new infected bite. The going downwards very fast experience is sooo current.
People who never lived a new infected bite on top of chronic lyme does not know what this means. It's like you have been bitten by an army of ticks AT ONCE. The aggressiveness is huge.
That's been our experience. That is why I think my doctor can energetically test weather a coinfection or borrelia is new or and awaken old infection.
In any ways, a new bite is always annoying, as it comes so aggressive....
Just a few thoughts...
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
They should initiate testing at the genus level, i.e., Borrelia, then drill down.
Identify species. Then break it down by strain.
This would enable easier identification of new infections, as well as imply import. After all, you can be infected with more than one species; why not more than one strain?
(Not sure they can distinguish between strains yet, but you would think they could if they don't restrict themselves to the normal proteins. Maybe it's just that nobody even tries. For instance, I have had a couple strains used to test me, but no one has been willing to commit I am infected with each, even thought I have been 2T positive for each.)
It would also help qualify pathogenicity. How does each strain stack up vis-a-vis symptoms, difficulty to treat, etc?
They can test for some different strains now. For instance, IgeneX uses two. So it's not like labs are restricted to B31. There are other like G39/40 and that mutant strain 49736.
Ultimately, there are a lot more than that.
Posts: 228 | From Unitied States | Registered: Jul 2015
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Hope you are able to get the treatment you need.
Posts: 21 | From Virginia | Registered: Sep 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Nice video!
Amazing that we, humans, are just 0.1% of a community of 'other' 99.9% DNA in 'us'.
Or in its best, we are 10% of human cells in comparison to 90% of 'foreign' cells in 'us'!!!
What is missing in the video, is that researchers are only concentrating on chemical level communication.
Dr K. says that the most efficient and thorough communication goes through photons (they can carry MUCH more information in one single photon, than any chemical).
Each cell emits photons, and supposedly, that is the main function of it: cell communication. Otherwise, how can only chemicals master 300,000 reactions in a second that happens inside cells, and make them perfectly synchronized our whole lives?
Photon communication of cells and bacteria: that is exactly how I dealt with Borrelia bacteria: sort of 'talked' to Borrelia through their vibrations (homeopathy) using photons on the 880nm range as a means of 'talking' to my cells (a bit like I would be telling all my cells: look into borrelia, please).
880 nm is one of the frequencies for cell communication, some believe.
The treatment is pretty real, as it creates fast results in many people (even though it does not heal all lyme diseases).
It looks pretty crazy, but that is EXACTLY what the photon treatment is: merely dealing with language through photons!
Science will still take ages to explain and develop theories around, as it still cannot explain homeopathy, in any way... Just food for thought...
Look at this intelligent researcher in this video. She's pretty smart, but it takes ages just to track a few chemical molecules involved in signaling and communication.
It does not even cross her mind that she may be missing a big big point: the photon field around bacteria and the 'host'.
Some researchers do their best, but it takes ages to master just one field (in this case, biochemistry), so imagine then going back to school bench, studying physics, quantum physics, and then perform inter-field research from start again? I guess, it will take decades....
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thanks, all. Getting ready to watch the tedtalk now! I'm learning so much from this forum. Today is day #2 of my new treatment with the Daptomycin. I'm documenting the symptoms as I go through the process in case anyone is interested.
-------------------- Positive Western Blot IGM - First in 2013; most recently June 2015. IGG always negative but bands 41,45,58,66 positive. Posts: 14 | From Florida | Registered: Jul 2015
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