"ILADS believes you have Bart's and Babs"??
Maybe they are recognizing that these are common co-infections, but can't believe that it is simply assumed. Something got lost in translation there.
I had Lyme and babesia, but not bartonella. My LLMD did in fact treat the babesia first, and then on to Lyme.
No, this is a new generalization, not just me, that is why it freaked me out. He recommends Dr Zhangs HH2 for Bart's, not the levaquin I am on and others following Burascano protocol but that 16th edition was written years ago by Burascano and I guess this new idea is going into print soon. So he is saying everyone who has either Bart's or babs has the other too. Especially since babs doesn't always show up sometimes for years. I called my friend in VA who works for one of the docs in under my skin and she says stay on the levaquin and doxy. So, I am more confused then ever, going to talk and discuss with my doc. Sorry brain fog, hope that translates.
Yeah, I'd still with the current plan, but that's just me. Hang in there! I know it's not easy, and the doubting is (almost) as bad as the illness. Mental torture.
If the dude wasn't an ILADS board member, I would say forget it but this is the "inside scoop"..... I am not going to change yet, I take the HH2 anyway because of his recommendation but I am not stopping the levaquin until I hear it from someone else who is credible.
Mental torture....not fun.
I hear you. As if being sick and miserable weren't enough ....
Someday we can look back and tell tales of how we were early warriors against Lyme. :) Sigh.
I spent two years near Lyme, CT, and grew up in PA. I now live in France, have been bitten at least twice here but when I went to see an infectious disease specialist (for a 2nd opinion, bc my doctor is sure I've got Lyme's disease, with hints of all the strains), she said that it was limited to the north of France, as if Lyme could only exist in CT and not NY for example !!
Has anyone got information on the strands in Europe or about multiple strand infections ? ??
My symptoms are mainly neurological (hearing loss, Ménière's disease, memory/concentration, balance loss, tinitis, migraines, vision disturbances, difficulties speaking, etc) whereas my brother (still in PA) has got joint issues and migraines but my 4 year old daughter has skin problems (erythema) and neurological issues.
You are very observant of the symptoms you and your family members are having, and that's good, as well as your awareness of Lyme and its dirty tricks.
Someone else may post here with specific information on the strains of Lyme, but wanted to toss in here a suggestion to search online for
if you have not already found medical care.
Best wishes --
I am not medically trained but just from hearing and knowing symptoms, Your symptoms sound like my Bart's and your brother's sounds more like my babs, your daughter could have gotten it in utero from you and skin rashes are like Bart's.
I was bit 18 yrs ago, not sure if ever re infected but my Lyme and co-infections were showing mild signs until 2 yrs ago then wham, knocked out big time. Can't work or do much of anything.
Not only are there different genetic strains of Borrelia, but there are different species. In the US so far, there is only b.burgdorferi, originally called Lyme Borreliosis. Before they knew which bug as causing it, it was known as Lyme Arthritis. Europe already knew about Borreliosis before Lyme. It is actually a misunderstanding to call it Lyme Disease all over the world. Borreliosis is a more appropriate name.
In Europe, there is b.burgdorferi, but more common is b.garinii, which rarely causes arthritis, and usually results in neuroborreliosis. There is another species in the more Eastern parts of Europe called b.afzellii. It causes a nasty and distinctive skin discoloration and swelling. Then there is b.valaisiana which is found between Greece and Asia. I think there are a couple others in Asia, such as b.miyamotoi (sp?).
I got mine in Australia, which is either b.burgdorferi or b.garinii. The disease presentation there is different than both North American and Europe, leading me to believe that different species of ticks results in different variations of disease and prominent symptoms.
I read a study done in Europe to see what was different when a mouse was infected with two species rather than just one. They discovered that the spirochete load was actually lower, but the mice were actually sicker than the mice given only one strain or the other. It is almost like the two species were competing against each other and triggering more inflammation.
What has been so devastating for patients is that the early researchers got stuck on their understanding of a particular presentation in Connecticut and concluded that if symptoms were different, then that must be a different disease. They focused on the disease in their own backyard, and rejected claims from others that the same disease could cause a wide variety of symptoms and presentations in different places and in different people. And so here we are, 30 years later, and doctors still think Lyme is sore knees and a rash, and untreated Lyme leads only to arthritis.
I have primarily neurological and organ issues, as well as painful ribs. There are some people here in the US who also develop a primarily neurological disease, and a lot of them can't get diagnosed because the establishment believes it is incredibly rare. When I was telling doctors I thought I had Lyme, none of them asked where I had travelled. Only one asked where I was when my symptoms first started. Since I didn't have joint pain and a bulls eye rash, my claims were dismissed.
There are way too misunderstandings about Lyme and how variable it can be.
Has anyone told you that your glands are swollen all over your body? The reason I ask is you and I both have Bart's, I had the rib pain which later I felt all over. My LLMD said I have swollen glands, everywhere. Press on any gland in my body and it hurts. It is reducing with Bart treatment.
Just wondering: is the rib pain from the cartilage that that extends from the ribs bones to the breast bone [sternum]? Knowing how the bugz looooove cartilage, I'm wondering if that's where they are camping out.
That's an interesting tidbit Jackie. I remember my sternum hurting, in fact, it used to pop sometimes when I drew my shoulders back. Doesn't do it anymore, the snap, crackle, pop is gone in many of my joints!
Yes, my ribs hurt in the cartilage, the rest of my definitely on the glands.
Thanks for that info Jackie.
I lean towards agreeing with Jackie that I wouldn't necessary change my course of treatment based on this comment. I take it more as a recognition of the complexity of tick-borne diseases and acknowledgement that the Lyme disease of the '70's when it first hit the USA is not the same as what many patients face today.
I know back when I was first learning more about Lyme and co-infections I went to the scientific literature and did note the researchers often note differences in strands. One such example that stands out in my memory is that strands found in Europe are more likely to cause lesions that show on MRI, while in the US that is less common.
I have not had a lot of rib pain, but I get a lot of lymph node pain, and have found that going for massages every couple of months (or as I can tolerate/schedule them) is very helpful with pain that builds up near my underarms and in my neck. In the past I had "herx-like" reactions to deep tissue massage though, so I think it should be approached with some caution. Now-a-days, I feel like it helps to keep things flowing and is a very integral part of keeping me feeling as good as I can.
Re your comment above: "In the US so far, there is only b.burgdorferi, originally called Lyme Borreliosis."
I might expand that a bit to say that in the US, only B.burgdorferi is *currently recognized* ...
Given the lack of any serious disease surveillance at airports etc., who knows who is arriving with what infections? Somehow Bb got to Australia ... so why shouldn't other strains of Lyme come here, either in people or in pets/animals? (There is animal quarantine for rabies on entry to the US, as I recall, I really doubt anyone is looking for Lyme, since it's such an insignificant ailment, acc. to the 'experts' at the IDSA.)
So anyone arriving here with another strain of Bb gets bit by a tick, which bites someone else, and bingo, the Lyme merry-go-round takes another whirl.
"I have not had a lot of rib pain, but I get a lot of lymph node pain ... that builds up near my underarms and in my neck."
Maybe the cholestyramine is helping with that too --
If you pay attention to your breathing, you will most likely find that you are shallow and fast breathers. if this is the case, do yourselves a HUGE favour
and visit the Normal Breathing website. You will not only learn how to breathe properly (incorrect breathing has many health implications) but you will be able to train your subconscious to pick it up, so you won't have to consciously do it.
Your lymphatic system will also love you for this, as you will be engaging it's major part,the thorax, for more efficient lymph circulation and drainage.
And please do the recommended LD physio.
Learn the LD exercises well from your PT, push through the mental and physical barriers, as this part - often ignored- is a very instrumental part of your recovery and wellness.
When you have toxic waste in your body for extended periods of time,it is not just the lymph node pains to be concerned with but rather the deeper meaning of this and the potential long term damage in the body.
The lymph nodes are just yelling at you to re-balance this deficient system.
Lymphatic massage is great, however, only one step toward correcting it.
So A.Exercises and activity,B. Proper breathing and C. Deep tissue massage OR
You can do your own with a long handle natural bristle brush of good quality
Doing these steps multiple times daily will ensure healthy lymphatic function (barring other underlying issues).
In the beginning when you do the slower and deeper CONSCIOUS breathing, do it as often as you can, for as long as you can.
I do my meditation, while I'm doing conscious breathing,
paying attention to only that. There's nothing else between my breathing and the universe. It all becomes one!
One added thing that works well , is gently bouncing on a mini trampoline for like 5-10 minutes a few times daily , if you can do this.
There's something about the reverse gravity effect. I have to find out what exactly makes it work so well.
I'm on the go. Gotta run.
Yes the swollen glands all over that i had are actually swollen lymph nodes a symptom of Bart's. I had brain fog, couldn't think of the name.
I have not had swollen lymph nodes. I don't think my case of Bart's is all that bad. It did make the neuro and GI symptoms of Lyme worse, bad enough to hospitalize me at one point, but the only specific Bart symptom I have had is anxiety.
Lyme likes the ribs because there is a lot of connective tissue there, especially in the lower ribs. I have also had pain along the sternum, as well as in the ribs in my back. The pain can be severe and debilitating. I am way beyond the more common "sore ribs" symptom.
I do feel luck py that I haven't had any joint or muscle pain.
Jackie - you are correct in that Bb is the only one found here. There is one exception. Some grad students helped collect sea bird ticks from a nesting island off the coast of Eastern Canada, and found b. garinii infected ticks there. It is just a matter of time before it gets to the mainland.
My wondering mind thinks .... if no one is testing us for other strains, how do we know that it's not here yet? ..... hmmmm .....
So, yes, "Bb is the only one found here." But if we're not looking for the others, we don't know for certain they are NOT here. Just like the docs who say there is no Lyme at all outside the northeast, upper midwest, and isolated areas of California. My faith in the CDC's surveillance is not high.
Thus we may be getting tested for some strains but not all, based on firm notions of non-migration of people, pets, birds, and ticks. Atypical presentations of Lyme may be due not only to co-infections (babs, bart, ehrlichia, etc) but also to variant Bb, unless the tests pick up all the species and all the tests are run ... which I doubt they are, but I have nothing to back that up. The spread of a novel bacterium into a naive population can be startlingly fast. Just a thought.
You know that I have been emailing Dr James Schaller, who my friend sees and is a little strange in his emails. I am following his protocols for Lyme, Bart's and Babs. He sent me some of his books free online and he mentions the other strains and he believes it is here so he is studying this. Not sure if others are. He is eccentric but I believe in his research and the fact that he is starting to believe Lyme is the co-infection of Bart's, babs, etc. For me that fits, not for everyone. It's funny that he publishes these books every couple of months because he says what he believed last month has more than likely changed this month which is kind of overwhelming if you really think about it.