Hi I joined only last nite. I have no support at home as it "seems"that we don’t have lyme where I live in Quebec. When they say listen to your body as you know it best, it’s so true, I did but I trusted the ID who saw me 3 times and lost my window for recovery. Now 6 months later, I am with a new ID doctor on doxy (100 mgs twice a day). The herk(?) is terrible. The first night was excruciating. Since then (3days) I am in pain Pretty much all over my body and soooo weak it’s scary…no appetite…relatively no sleep…It’s obviously a tough job killing those bacteria. I try to see the light. I was very active. I slowly stopped things since June (when I got bitten) and went to multiple doctors with so many problems which ending up being the lyme in the end. When I told my doctor about the doxy pain, he said he was more convinced than ever that it’s lyme. I forgot to mention that the serology came back negative twice. I read that it is not a reliable test at all. New ID doctor did third but didn’t care about the results as he saw the pics of the bite and different states I was in. He also LISTENED to my symptoms.
I feel as though I am treading water. I could go on but that’s probably a good indication of my present state and then some.
I also wanted to add that I get stabbing head pain headaches (went to er for that and was told atypical migraines). and every joint in my body swells and pains me, along with the other aches and pains.
The "cysts" are an example of WHY you stay away from the NPs who take a simple physiologic concept and turn it into a hocus pocus money sucking scheme. What this person is referring to is plasmids. In nature, plasmids often carry genes that may benefit the survival of the organism, for example such as antibiotic resistance. While the chromosomes are big and contain all the essential information for living (an adequate analogy is the hard-drive of a computer), plasmids usually are very small and contain additional information (in this analogy, plasmids are the USB flash drives).
Plasmids are "naked" DNA and do not encode genes necessary to encase the genetic material for transfer to a new host. However, some classes of plasmids encode the conjugative "sex pilus necessary for their own transfer. Lyme is not one of them. In any event there is no "busting" medications If there were we could cure anything including viruses.
I'll avoid the Igenex test issue for now. Septic Arthritis is a very real thing as you pointed out although Lyme as a cause is very unusual. Far more common are:
Hepatitis A, B, and C
Haemophilus influenza
staphylococcus
streptococcus
Parvovirus B19
Herpes viruses
HIV
HTLV-1
Adenovirus
Coxsackie viruses
Mumps
histoplasma
coccidiomyces
blastomyces
More often than ever we are seeing a fair number of cases being caused by bad detox regimes and pro-biotics. Coxsackieviruses are part of the enterovirus family of viruses that live in the human digestive tract. Should that system get out of wack they multiply rapidly and cause all manner of problems.
Fortunately most cases of Septic arthritis correct themselves within a few months to over a year. Makes some of the quacks look brilliant.............
The "cysts" are an example of WHY you stay away from the NPs who take a simple physiologic concept and turn it into a hocus pocus money sucking scheme. What this person is referring to is plasmids. In nature, plasmids often carry genes that may benefit the survival of the organism, for example such as antibiotic resistance. While the chromosomes are big and contain all the essential information for living (an adequate analogy is the hard-drive of a computer), plasmids usually are very small and contain additional information (in this analogy, plasmids are the USB flash drives).
Plasmids are "naked" DNA and do not encode genes necessary to encase the genetic material for transfer to a new host. However, some classes of plasmids encode the conjugative "sex pilus necessary for their own transfer. Lyme is not one of them. In any event there is no "busting" medications If there were we could cure anything including viruses.
I'll avoid the Igenex test issue for now. Septic Arthritis is a very real thing as you pointed out although Lyme as a cause is very unusual. Far more common are:
Hepatitis A, B, and C
Haemophilus influenza
staphylococcus
streptococcus
Parvovirus B19
Herpes viruses
HIV
HTLV-1
Adenovirus
Coxsackie viruses
Mumps
histoplasma
coccidiomyces
blastomyces
More often than ever we are seeing a fair number of cases being caused by bad detox regimes and pro-biotics. Coxsackieviruses are part of the enterovirus family of viruses that live in the human digestive tract. Should that system get out of wack they multiply rapidly and cause all manner of problems.
Fortunately most cases of Septic arthritis correct themselves within a few months to over a year. Makes some of the quacks look brilliant.............
I don’t really understand your responses. It seems that ,according to you, there is no help for lyme. Exactly what do you believe in? What does work? Who should people see? Who should that believe? Where/what is the light at the end of the tunnel???
Foggy said:
tj1 said:
The “cysts” are an example of WHY you stay away from the NPs who take a simple physiologic concept and turn it into a hocus pocus money sucking scheme. What this person is referring to is plasmids. In nature, plasmids often carry genes that may benefit the survival of the organism, for example such as antibiotic resistance. While the chromosomes are big and contain all the essential information for living (an adequate analogy is the hard-drive of a computer), plasmids usually are very small and contain additional information (in this analogy, plasmids are the USB flash drives).
Plasmids are “naked” DNA and do not encode genes necessary to encase the genetic material for transfer to a new host. However, some classes of plasmids encode the conjugative "sex pilus necessary for their own transfer. Lyme is not one of them. In any event there is no “busting” medications If there were we could cure anything including viruses.
I’ll avoid the Igenex test issue for now. Septic Arthritis is a very real thing as you pointed out although Lyme as a cause is very unusual. Far more common are:
Hepatitis A, B, and C
Haemophilus influenza
staphylococcus
streptococcus
Parvovirus B19
Herpes viruses
HIV
HTLV-1
Adenovirus
Coxsackie viruses
Mumps
histoplasma
coccidiomyces
blastomyces
More often than ever we are seeing a fair number of cases being caused by bad detox regimes and pro-biotics. Coxsackieviruses are part of the enterovirus family of viruses that live in the human digestive tract. Should that system get out of wack they multiply rapidly and cause all manner of problems.
Fortunately most cases of Septic arthritis correct themselves within a few months to over a year. Makes some of the quacks look brilliant.............
Foggy, there is no magic bullet to make chronic or autoimmune symptoms disappear that have been triggered by lyme disease. However, time can bring an easing of symptoms for many people. Some of the symptoms can be managed by lifestyle changes and by medications. More research is needed to provide additional treatment options. In the meantime, there are coping skills that can be learned and adjustments in outlook that can be helpful. You learn to work around the symptoms as much as possible. It is not easy. Optimism helps.
Oh, I am trying to be optimistic and I am trying to find my way but I do not like the tone in tj1's responses. Scientific answers don't necessarily hit the spot (even if he is correct) when you are going through daily suffering. This should be sharing and helping not talking at someone.
It take all types, Foggy. The thing about scientists is… they tend to be very scientific. Logic and empathy are hard to combine sometimes, but you are right that it’s best when we can have both on a community.
Just exactly what do you want me to share? Would it make it better to say putting $2000 into a course of treatment for "cysts" that don't and and can't possibly exist and even if they did aren't the source of your problem is a great thing?
BTW what makes you think you are the only one suffering? I know you desperately want to believe that there is an answer around the corner for your problems. But please notice something. brazil told you what you want to hear. There is a "test" there is a "treatment" and an other "treatment" and another treatment after that. Thats Hope, optimism and maybe even encouragement Just what you want. OR is it?
There are several "believers" in "lyme literate" and alternative doctors on this board. They all have one thing in common. They are just as sick as the non believers. There are times they feel better (treatment is working) and sometimes they don't (need more/different treatment) Just like those odf us who DON't chase the windmill. We have at least one former active member here who can no longer participate, not because of "Lyme" but rather multiple organ failure as the result of long term antibiotic treatment.
When I was in first grade my best friend and I both got very sick, so sick in fact we had to be in the hospital. (I'm going to show may age here) It was pretty cool that we got to be room mates as there wasn't TV in the hospitals in those days or anything much to do besides be sick. We both started off flu-like symptoms such as mild upper respiratory infection, diarrhea , fever, sore throat, and a general feeling like yuck Well I started to get better. Danny didn't, turned out he had polio. Like most he got better in time. Started out in stretcher like bed, then wheel chair and eventually walked, played and ran with the rest of us except he had a bad limp and a "gimpy arm" By the end of grad school most of that got better too. He turned out to have be the lead design engineer for The Boeing 727. But he never had polio after he left the hospital.
When you have a disease that attacks parts of your body sometimes there is damage done that doesn't fix it self right away when you get well. With Lyme that is called Post-treatment Lyme Disease Syndrome. I suppose Danny could have spent the next 20 years looking for a cure for polio instead of dealing with the issues bothering him. But even he knew he didn't have polio he had, had polio - big difference.
Its go to be hard looking for treatment for a disease that it isn't even clear you had, may have been caused by something entirely different and in any even you don't have now. Post-treatment Lyme Disease Syndrome can be dealt with, and people deal with it well when the realize they are no longer dealing with an active disease that has a "cure" (or should have)
Sorry you don't like how I say what I have to say. I'm a scientist not a psychologist.
I wasn't discussing the cysts. My feeling is that gathering information is very important. As I have said, there is no lyme literacy here in Montreal. Although there have been many cases of Lyme infection not 45 minutes from here. How naive. I have one and only ONE doctor who is willing to look at this as lyme. The llnp is the only one in montreal. I am well aware that it is a business for her. It is her job. She is the only one I know here who had Lyme and knew I had a Bart rash when I sent her a photo. I'm not saying she knows what to do with that but I will deal with my ID. If you recall, I was going to a rheumatologist. Well, he too said..no lyme 110% Pretty good after 10 minutes, no discussion and no visuals. It is frustrating. Lyme...co-infections. I have no idea where this is taking me. I am still on the doxy ...2 weeks today and will stay on it until I see the ID doctor.
It is a tough position, Foggy. Wanting answers when no answers are available. I very much hope that a new, more definitive test for lyme is developed soon, so that the diagnosis is no longer an open question. I also hope that a lyme vaccine is developed and becomes universal so that lyme disease in humans becomes a thing of the past.
You are doing a good job Foggy gathering information foggy (you aren't quite so foggy) The information gathering and sorting is in and of itself empowering.
Just remember there are over 300 registered members and 1000 or so unregistered members reading these boards so when something like "cysts" come up we need to clarify or 500 people could be demanding cyst busting medication the next morning. 497 of which would be looked at by their provider like they had three eyes.
So lets back up here You said BART RASH????? Did I miss that before? First of all you can't diagnose a rash by photograph especially a "Bart Rash" you need to physically examine/touch it. Otherwise its impossible to distinguish it from a number of other things such as stretch marks, tight clothing, wrinkled bed sheets etc etc.
Secondly only Doctor (and i use the term lightly) Burrascano has advanced the theory that Bartonella is a coinfection of Lyme. He pretty much picked it out of thin air when presented with evidence that Burgdorferi could not do what he said it was (it required a gram negative bacteria which Burgdorferi is NOT) There is insufficient evidence that it is even tick borne. Its a lie to cover another lie which is part of why so many states have gone after Burrascano. In fact when he got caught in the caught in the Bartonella Lie he started referring to"BLO's" (Bartonella-like organisms) instead.
Bartonellosis is a whole different thing than Lyme even though the "LLDs" treat it as Lyme. (Thanks to Burrascano) You could run Lyme tests until the cows come home and never get a positive test. Its used to be known as Cat Scratch fever. It primarily effects the exocrine system but goes after the anything with a duct including the cerebral spinal system, heart and lungs.
It is also very often confused with an auto-immune condition called Sjogren's Syndrome. If you read up on SS, you may find a description of you.
In any event if the rash WAS a Bart rash, you are hunting the wrong dog with Lyme. Bartonella will never show up except in a PCR culture using Bartonella alpha Proteobacteria growth medium. Then a differential test needs to be done to determine which ABX to use. Doxycycline is not likley one of them, infact may make things worse. The ones that do work will have to come from a real MD.
The fogginess has lifted a little I must say. The fatigue remains. I have my days and my moments. So, the rash is absolutely not from any of the above mentioned possibilities. (the firstly part) Secondly, the rash reared its ugly head on my forearm after a few days of pain in a specific area there. When I read about it, I did read about a different treatment if it was Bartonella. Azithromycin was mentioned. If it is a Bart rash, you bring up interesting information re treatment. The ID md I see is a professor of Microbiology, I think. This will surely interest him too.
Are the symptoms of lyme and Bartonella the same?
I think the Doxy brought out the rash. It's now under my chin. Never had that before and burning sensations on the skin. (sometimes itchy).
I don't think it is Sjogren"s syndrome, although nothing can be ruled out unless a doctor takes it upon himself to do some testing!!!!
If the Doxy brought out the rash, I have heard that happens with Bart.....
Their is so much overlap its scary sometimes......... But the conditions I gave in the long list could all cause the rash and all cause the symptoms. There are 13 kinds of Bart all with a different ABX sensitivity which is why it needs cultured.
No its real live infectious disease medicine. You are better off with a high school biology class than Igenex. Bart is its own thing The symptoms overlap. Co-infection is for the most part weasle words from the quackery world. If they treat X, and it doesn't work, they blame it on co-infection.
Well, that's encouraging. At least I can arrange to do that here for free. I have already taken note of the info you sent and I will pass it on, on the 12th when I see the doctor. THANK YOU. I wish it could be the answer. The first question :
o, is the overlap lyme and bart or is it the symptoms that overlap? Let me try to be more succinct.
If the Rash is Bart, is bart a co-infection (bart/lyme) or could it solely be Bart? Last one for tonight, I promise.
️thank you