What to do when you start to doubt

My family is getting more worried about me, they see me just dwindling away and it is making them question Lyme. (Reading and sending me the CDC page about Lyme...) Heck, they are making ME question it. I had an inconclusive igenex and low cd57. But I'm getting sicker and sicker.
I've barely done anything to treat, just a 7 week course on a pretty low dose of doxy plus samento and banderol. I've been on an abx break for a long time now. And I know I've mentioned it on here but the decline continues. New things keep popping up, almost daily!
It makes me wonder if something else is going on or if my dr is not experienced enough for s chronic long term case or if I haven't found the right thing or if I need something that will pack a bigger punch like IV meds.
I ordered that book written by 13 llmds and llnds and I am praying that one of the approaches will resonate with me.

I have been doing iv rocephin for 9 months and bee venom therapy for 1 yr 2 months and still see the spirochetes in my blood under the microscope ...
if not lyme bart myco n friends then what ?...chick can you afford the dna connexions test ?
Or a microscope ...
can you do rife or bvt or some andrographis or houttynia ..
samento and banderol were weaksauce imo

Until you aggressively treat coinfections you won't see much improvements if you only focus on Lyme.

The book should help you sort thru different treatment approached. Her last book was pretty good and I learned alot early in my treatment.

Chick, I'm really glad you are exploring these things! I bought the same book and it really helped me to understand a lot about the treatments of these infections. The differences between LLMD's can be extensive, as can their treatment protocols. Remember, what works for one, doesn't necessarily work for another. There may be many things in your current protocol that, if changed, would make a difference for your healing. You may only wish to get a second opinion from another highly successful LLMD to see what they have to say, or maybe you will choose to change your treatments all together.

As far as family doubts, I think most of us deal with that, in one way or another. But, since your family is using IDSA standards to try to cause doubt in your mind, I would encourage you to either ignore them, or to educate them on the massive differences between ILADS and IDSA.

Things like the IDSA treatment guidelines being removed from the NGC (National Guidelines Clearinghouse) should have said massive amounts about how wrong they were, but for some reason, it's as if it's been ignored. ILADS treatment guidelines are now listed on the NGC though!! That alone should say another 'volume' about the different thoughts on these diseases.

Lastly, hang in there!!

Since I have psoriasis - that only appears when I'm infected with these diseases - I would have to agree that they are a cause - but remove the infections, and my psoriasis clears up and I don't have any flares of it at all. I went for a full 2 years without any signs of psoriasis on my skin -and this was during a time of heavy family stress (FIL with end stage Alz moved in, he passed, then my own Mom moved in just a week later - although she's healthy as a horse!) - and all during that time, I still had no signs of psoriasis. It was only when I got reinfected that that dirty bugger showed back up.

When I take the Horowitz questionnaire I get something like 70 points. I have all the classic symptoms, migratory joint muscle and tendon pain, migratory burning tingling numb skin sensations, headaches, light sensitivity, migraines, stiff neck, anxiety, word finding issues, POTS, mitral valve prolapse, memory issues, a handful of autoimmune stuff, etc.

I never had any relief while on doxy. It's been like slow decline that's been particularly bad this winter. It just sucks. I want to see just some improvement, some light at the end of the tunnel.

Have you explored mold toxicity? It often goes hand in hand with Lyme. The symptoms are pretty much identical too. If you LLMD doesn't know much about it then you can read about it at www.survivingmold.com/.

There are some blood markers that can indicate mold (but some if not most can also indicate Lyme). They are: www.survivingmold.com/diagnosis/lab-tests. There is also a urine test from Realtime labs. It is pricey though. Or, you can test your home using ERMI or HERTSMI (dust collection) from Mycometrics. You need a doc to order the urine test but can order the house mold test yourself.

The book you mentioned above (I also read it) talks ALOT about mold. I think you will find it helpful.

It is also possible that your main issue is coinfection, which the book also gives some good tips on.

Best of luck.

Like K07 said, explore mold.

Look into your thyroid and adrenal health.

Look into toxins.

Look into co-infections, including parasites.

Look into food sensitivities, and explore different diets.

Look into candida and other fungi.

Treat the cystic form of Lyme.

So much more to all this than just treating spirochetes.

At this point I really just want IV abx with herbal and supplemental support. I think I need to see someone else. My dr is early in his lyme career and I don't think he knows what to do with me. I'm willing to travel to see someone more aggressive. I think I need to. I hate taking pills, I can only take them one at a time so it takes ages to get them all down. And oral abx tend to hit my stomach pretty hard.

Psilociraptor said...
Mind sharing your symptoms? Your WB definitely "suggests" Lyme but I think you'd be right to have a healthy dose of skepticism. Lyme is far far far from the only organism that causes horrific chronic illness. It is just the one most common in America and thus one of our first windows into understanding chronic disease. But the symptoms can really make the difference in understanding your illness. Contrary to what July said the disorders Lyme "mimics" are not incurable. They are exactly the same as Lyme because Lyme doesn't "mimic" autoimmune diseases, it is ONE of MANY infectious CAUSES. So the tools that you pick up and apply to Lyme are going to apply to everything in some extent and this is especially true if you don't just rely on abx. Those will never touch viruses. They will never heal leaky gut. Never restore your immune system etc.

I am sorry, but I am not understanding you.

Why then was I diagnosed with Fibromyalgia for 33 years, and still am, in spite of 2 CDC pos. RMSF tests?

They do not "cure" Fibro, they throw pharma at it to dull symptoms.
Why would a neurologist rather think that I have Alzheimer D. rather than consider Lyme and co? When did Alzheimer D become curable?

I could go on, but my point is the symptoms of Lyme + co, are very like symptoms of other disorders, and if that's what the MD's want to insist you have, that's what you will be treated for, and not cured.

AKsorewalrus said...


Just because you discover you have Lyme, it does not eliminate the other things that doctors diagnosed and treated you for. Diabetes, FMS/CMP all run in my family, not all family members have indications of Lyme disease. Unfortunately we can have multiples of conditions, parasites and diseases in the human body, that is why people here say FOCUS on immune system, gut health and freeing yourself of Lyme's, then MAYBE everything else will subside. If not, those other things will continue to be problems, long after the critters are purged from our tissues, and we will still have to cope with what remains.

Many of the 'ailments' we have been diagnosed with are misdiagnoses...due to lyme.

This can be fibromyalgia, MS, Lupus....etc.etc.

My personal opinion. You better treat it with the big guns. I'm sorry u use herbs as a compliment but they alone will not even touch the bacterias... unless it's a very small infections.