Brand new here and terribly upset

Not really. I think that would put me over the edge.
My wife is a saint and feeding me well to keep my energy up.

I puked once at the start of this but that was after taking zinc and turmeric on an empty stomach.

I'm so sorry to hear you are going through this JDB15. I have a friend who is a strong and very knowledgeable advocate, she lives in the Toronto area. I'd be happy to pm you her info if it can be of interest.

One consideration, if you are well enough to travel, would be looking into connecting with Dr Horowitz in NY state (if he is still currently taking on new patients). His book is quite informative as well. Another highly regarded practitioner in the Northeast is Dr L (I don't use his full name), he also wrote a book, In the Crucible of Chronic Lyme. There are obviously many other good practitioners as well.

The two tier antibody testing for borrelia can be very iffy, many of us have learned this the hard way. It should never be used to fully rule out a borrelia diagnosis, but information gleaned from the WB can be helpful. The key is finding a dr, especially an llmd, that you connect with and whom you respect, they will be able to thoroughly evaluate you for borrelia and coinfections. Nailing correct dx's via diagnostics on the coinfections is just as tricky as the borrelioses, just a head's up on that. And the coinfections are hugely important issues to rule out, including bartonella.

Best of luck, you have found a wonderful community of kind and knowledgeable people in this forum. I hope you will be feeling better quickly.

cool will do Asmoline! Oh wait, your pm message thing isn't turned on so I can't send you a message at the moment. There is a way to toggle that on your profile settings I think, I can't remember how exactly though.

Btw JDB15, I do think it is a good idea to see an ID doc, especially to help you rule out the wide array of possibilities. But if in fact you do have borrelia and/or coinfections you will usually be best served by an llmd/llnd (but please note not all llmds are created equal!). Different borrelia species and strains often present with some variety and differences in symptoms. They are finding burgdorferi in Europe but there are 3 (from what I remember) other species that are more common there.

There are some very good ID docs who know and understand how to treat borrelia, but on average the vast majority of ID doctors are recalcitrant in diagnosing these infections and just as stubborn in their treatment methodologies. For the difficult cases (which most of us on here are), treatment requires multiple modalities that encompass a wide variety of strategies.

I haven't read through the whole thread but I imagine someone must have already referenced Stephen Buhner. He has written wonderful books on herbal treatments in regards to these infections. He recently released a new version of his Healing Lyme book.

JDB15

I am very sorry to hear that you feel so sick. You have hope in that your thinking seems to be beyond your training. Your independent thinking will serve you well!!! I will be rooting for you.

Don

Sorry guys - thanks!

Thanks for all the kind words and very helpful advice everyone.
My wife is quite sick with a bad respiratory thing so I dont know if what I have had the last few days is that but without the resp stuff. Maybe I have two things. Ugh.

Anyway I'm just at the lab and my blood is spinning for the igenex tests. Sending them this morning. And I managed to get an ID appountment for tomorrow morning. So hopefully someone figures this out soon!

Good input everyone

ItisLyme has made a good point about diet.

I have noticed that even dietary changes make a drastic change. When I went from a vegetable and collagen heavy meal sources to a gluten/dairy/sugar based food source just to see what would happen. about 3-4 days in I got hit harder than I thought and didn't realize how much an effect it had. It was actually very scary to realize how drastically it increased symptoms.

I also wanted to mention, that if your test results come in Negative for lyme, that doesn't mean its not lyme. The tests are not highly accurate. My results came back negative, with IND bands, but believe me I am infected with something from the tick that bit me.

I wanted to mention that it's good you have an appointment with an ID Dr to rule out other infections. However, it is likely that he will be sure you don't have lyme. If he thinks it is possible, forward me that # lol :)

Also remember that if it is lyme, your immune system will be heavily compromised. Even a common virus you get from touching something, will have an exaggerated effect on your system, this may have let a simple virus get you sick, and in turn into your wife. Some co-infections are also respiratory based (one of the chylamydia genus infects lung tissue, I believe). I got a "common cold" last year with a group of friends while travelling. Everyone else was sick for 2-3 days. I was sick, more intensely, for 6-8 days.

Also keep this in mind if your blood was taken a week that you were "extra sick". The test looks for antibodies. You may have reduced lyme antibodies because of another infection that is currently happening.

Just wanted to make that connection, for you, and anyone else because for some it may be basic knowledge, but it was something that took me a bit longer to learn! I was about to start pursuing other avenues until somebody on here cleared it up and gave my head a shake! Glad they did!

Post Edited (Asmoline) : 6/27/2016 11:18:42 AM (GMT-6)

JDB 15,
Welcome. This forum is so informative and many of these members know just as much or more than LLMD's/ND's. Great information here. They have done an amazing job! That said, I'm so sorry you are experiencing this. I was a nurse, and it is a very humbling experience to have to stop working at times. But the positive is, it gives me way more compassion and empathy for patients. I suggest not forgetting compassion for yourself right now, too. It's SO very important in healing. Giving yourself this time to rebalance even though family, society, friends and colleagues may see it differently. Our bodies tell us what it needs and the challenge is to listen sometimes.

I got infected almost 20 years ago. At first I had 2-3 years of suffering, huge fatigue, aches, pains in joints -hips and neck, sore throats, swollen glands, flu symptoms, fevers, uncoordinated movement,equilibrium, perception issues, headaches, eye blurring, cognitive decline, forgetfulness, insomnia, anxiety, depression and numerous other sx's, I tested positive on the Western Blot and treated for two weeks on Doxycycline. Not enough, back then that was the protocol and I believe it still is. I had been to numerous doctors, other health practitioners, and often sent to psychiatrist because of my fatigue and depression. As Pirouette said, darn right I was depressed for not feeling well for so many years as a young person. Still not realizing that I had Lyme and co-infections, I went on and off anti-depressions through the course of that time, with no other alternatives that I knew about. I usually went off the antidepressant b/c of side effects and it never really made much of a difference. For me, these infections wrecked havoc with many of my bodily systems. I am still working on ridding myself of these infections, especially now with a positive Bartinella and activated form of EBV and CMV which is common with Lyme and Co's.

You asked if anybody has been in this state. Yes, I certainly have and there were days I couldn't brush my teeth, either. So please know that you are validated and heard. There are others with these symptoms as well and you are not alone. This so sounds like Lyme Disease. My LLMD who is also a friend, told me about another MD in Ca that had to stop her practice for a while because of Lyme disease. So hard for a doctor to do that since they are "in the business" and suppose to be "well". When I mention "Chronic Lyme Disease or Late Stage Lyme" to some of my medical friends they glaze over not really believing what we go through or believing this even exists. This is the hardest part for me. It can be a very lonely disease, constantly not feeling understood or supported the way other illnesses would be. Also, waking up not knowing what kind of a day you will have with running the gamut of all these symptoms can be daunting especially if you are working in the OR. Stress is another huge factor. In times of stress, my symptoms get worse. Increased cortisol has a cascading effect and upregulates sympathic response and excitatory immune, neurochemicals, hormones. Hard to tell what is what.

You said you have issues with insomnia. That is always the beginning of an exacerbation for me. You also said you were using Ativan, which I had to recently too, for so much jitteriness and tremors. I used it for a bit then I switched to Theanine 100-600mg/day, ashwagnada, phosphatidylineserine -also 100-600mg/day for brain inflammation, 5 HTP and Methylhydrofolate. I am suggesting this only until you get support with a LLMD or practitioner. But go slow on this esp. if you are on any other psychotrophic meds as the 5 HTP can potentiate any serotonergic effects. There are so many psychological symptoms,too. from mood swings to suicidal ideations that no one talks about. Stay connected and ask for help.

My experience with herbs in the last 15 years there as only been one time with loss of taste with Japonese Knotweed but that could have been a detoxing effect, too. Again, hard to tell.

Hope some of the symptoms start to let up with all the wonderful detox recommendations. Who know this could have meaning for a different medical specialty!