Testing directly for spirochetes?

Goldengoose
I totally understand what your dilemma is. Unfortunately I dont have an answer for you. Are your other Lyme symptoms better? Maybe the anxiety and depression is unrelated to the Lyme.

Also, have you ever been Lyme tested from igenix in California? They are one of the best labs for Lyme. If not, maybe you should invest in that. Even if a few bands show up it might give you a more positive attitude on whether you have Lyme.

I hope this helps. I am sure other more knowledgeable people will chime in.

My physical symptoms have definitely improved since they got really bad all of a sudden in Fall of 2016. ( at this point I could barley get out of bed...) My fatigue is greatly reduced as well as muscle soreness etc. The problem is my anxiety is still very much still an issue and its tough to tell whether I have anxiety/depression along with Lyme, just anxiety and depression, or just that Lyme has caused anxiety and depression over the years.

I am currently on a break from the abx I was on and seeing if going back on 10mg of prozac a day will help. (this is all with doctor, my LLMD, permission)

I was on compound Tetracycline Loxo 3x a day, along with Fluconasol to control yeast. I see my doctor again on Tuesday so I will see how that goes.

"If I could show even a cdc a actually picture of a spirochete inside me, how could they argue against an infection?"

Well, I had a fully CDC positive Western Blot for Lyme and RMSF and they ignored it - both state and federal registers do not have any reported Lyme cases for 2008, which is when I had my tests. So, yes, they can and do still deny that a person has Lyme, even if they can see spirochetes in the person's blood, or are able to even test fully positive by their standards (which are very faulty).

The one thing that jumps out at me is that yes, you have been treated 5 times - but only for 2 weeks each time, which is a significant under treatment. You should have been in treatment for another 6 weeks after that, for a total of 8 weeks minimum in order to heal these infections. My own husband was infected, and because I advocated for him (read that as made sure the doctor understood what was happening and how to proceed), he healed very well with just 8 weeks of treatment with Doxy.

Another thing that you do need to understand is that 99% of doctors don't learn about Lyme in school. They have a very brief time dedicated to it, telling them that it's hard to get and easy to treat, there are very few that they will ever see (if any) in their practice - not to mention that the CDC is actively calling doctors and clinics to remind them of the CDC's stance on Lyme and treatment of these infections and how they should be careful to stick to the CDC's guidelines.

This leaves those of us with these infections only one option - to seek out one of these brave doctors that choose to 'buck the system' and learn on their own about these infections. Those that do are almost always LLMD's, so that's who we suggest Lyme patients see and rely on. They may not have all the answers, but at least you don't have to start by arguing whether or not you have Lyme and other associated infections usually. I my 45 years of being ill with these infections, I've only had 2 doctors believe I had these infections - and yet, treatment for these infections is the only thing that has ever made a difference in my health.

The fact that you have made some progress shows you that you are going in the right direction with your treatments. But, because you have had an increase in some other symptoms, it makes me think you are likely herxing, so the next question is what are you doing for detoxing?

Traveler, I dont think (if I do have Lyme) that I got it 5 different times. Whenever I would be feeling extreme fatigue and depression, I would go to a clinic and they would run a western blot. All of my tests have always come back somewhere in between positive and negative with an IgM marker of 23 and 41. The doctor would say "Ohh maybe its Lyme" and treat me with two weeks of doxy. My fear is that I will always show these markers, that my symptoms may just be from anxiety and depression wreaking havoc on my body. I mean, if somebody has depression or anxiety (they almost always come together) and shows a couple markers on the WB, I feel the symptoms are so similar to Chronic Lyme that an LLMD would treat for chronic lyme.

The problem with this way of thinking is there is really no explaination of why I would get better from some of my symptoms while being treated for chronic lyme. During this time I have gotten off my past meds of 60mg of prozac a day as well. So shouldnt I be doing horribly now?

It is very confusing and has me going a but crazy trying to figure it out. My whole family seems to have anxiety and maybe I just got it a bit worse. My sister has even been on and off many different psych meds and had extremely similar symptoms to me earlier in her life. Who knows, maybe she has chronic lyme too.... But shes doing fine now without ever treaing or testing for Lyme.

I just hate to continue to suffer like this without knowing. Prozac got me through 8 years while being able to live life fairly normally. I dont blame anybody with Lyme, people do have chronic lyme, but people also suffer from depression and anxiety which effects them physically. When an LLMD tells one of these people that its not depression but a bacterial infection, of course they are going to believe them, people want to believe they can get better from their ailments. I just fear ive been convinced of something that may or may not be true because I dont want to "believe" that im natully a bit depressed with anxiety..

Thanks all!

Traveler,

Again, thanks for your post.

So, if I do heal completely from the borrelia I should no longer test postive for these bands (23 and 41) on my IgM? My doctor is pretty confident that I will make a complete recovery if I stick with this treatment plan for several more years.

The anxiety and depression that I suffer from does indeed come in cycles. I think if I was completely healthy, I would still be a type A personality, my whole family is, but I think having to deal with "Lymeland" and its craziness has made my anxiety and depression come out much more than they would normally. Also, being sick and the isolation this causes is a tremendously difficult thing to deal with. Knowing that I still have a lot more to go through is daunting to say the least. I'm 27 and I just want to live my life! That being said, I really do realize I have progressed. I wish I could be more "hands off" and just "trust the process" but unfortunatly I'm just not put together that way...

IMO you should see results after 6 months, much longer than that and other infections or treatments should be considered.

Goldengoose, no, you will likely always test positive for Borrelia. The only time the bacteria can all be eradicated from the body is if the infection is caught at the very early stages - within weeks of the infection starting. Even then, not all heal well, and go on to develop chronic Lyme. Sorry, I'd love to post nothing but positive things, but I'm a realist and feel that we should know the real truth about this.

The thing about this bacteria is that once it goes chronic, we never get rid of every Borrelia bacteria, but our immune systems are capable of keeping it in check - at low enough levels to not create symptoms (which is why we use symptoms, or the lack of symptoms to guide us) - even though we will still possibly test positive. It's not known if we will ever have a time of testing "truly" negative (not from faulty testing, but honestly not producing antibodies from Borrelia). This is why it's good to be sure that you support your immune system and general health, even after you have healed.

I would never encourage someone to be more hands off with their treatments!!! We are dealing with doctors that are humans, they make mistakes, get overloaded, and other issues that they may have - and if you are quietly doing what you are supposed to be doing and just trusting the doctor, that often ends not so well either with these infections. We encourage everyone to ask questions, and get the explanations of what the treatment is, what is the expected outcome, and what each med should be doing to help. We can't beat this if we aren't highly informed as well, especially once we are dealing with chronic infections.

As far as not using dark field testing for diagnosis, well that is on the CDC. They have to recognize each test as valid for it to count. That's why we are left with such horrid tests! They miss up to 50% of those that actually have these infections, and the CDC has come out and said that it may take many times of testing before a person gets a positive test, and that they should start treatment if they believe they have been exposed to Lyme.....right, get a doctor to follow that!!!

I understand the difficulties in trying to figure out what caused what!!! I've pretty much given up on trying to figure that out for myself, but I know that for some, it's fairly clear.

Well, one thing is for sure, I'm very happy to hear that your son's depression cleared up!!! That can be very wicked with these infections/conditions!