Let me lay down this required disclaimer and then we can talk candidly and openly.

I am not a physician, but I do work and get referrals from some of the top LLDs in the world. However, I am a 30+ year systems analyst who has been LD infected for 20 years and involved in the Lyme community for well over a decade.

My team is in the process of opening Wellness Centers around the US for Chronic Lyme (CL) patients who have not had success with long-term antibiotics. These centers will provide drug-free treatment and detox regimens for CL sufferers. I may take you up on your offer to spread awareness, thank you.

With over 9 years of daily IVs, many times I wished my life would just end, especially during those Herxing episodes. The torture I was going through and the toll it took on my family was unbearable. But, I have been improving over the past two years so there’s a light at the end of the tunnel.

So please, be strong and persevere. When you find the formula for improving, you’ll be proud, a hero, and you’ll be able to help the others afflicted.

As for the Morgellons, what crap. They often diagnose this when doctors and hospitals don’t have an answer. Rather than be ethical and admitting they don’t know, they label it psychological. What a “Catch-22”. You can’t challenge the diagnosis because the geniuses already labeled you crazy.

Can I assume you are Down Under? If so, LLDs are far and few between. A non LLD may do more damage than good. This is because a non aggressive course of antibiotics may enable surviving spirochetes to mutate and become resistant. If that happens, that’s one less weapon in the arsenal to fight the disease.

If you are left to fend for yourself:

• Exercise often. It is believed that the spirochetes don’t like oxygen, so oxygenating your body might help.

• Eat plenty of natural antibiotics like garlic. But if you do so, remember to replenish the good bacteria (e.g. acidophilus).

• Eat anti-inflammatory foods like blueberries. It might relieve some joint pains.

• Likewise, avoid inflammatory foods like breads, pastas, etc.

• You might try the Vit C and Sea Salt regimen, but be careful. Too much salt in your diet is dangerous.

If these ideas are succeeding, you might experience some severe Herxing. Though torturous, it should be a good sign; the spirochetes are dying.

As for the Galas, Rosellas, Cockatoos, etc., they are worth rescuing. Thank you.

All the best, and stay optimistic,
Rob

Since he loves the outdoors, I assume he was not a complainer about pains and health problems. Well, at least until this nightmare became intolerable. If true, this is very common with Tick-borne infections (TBI). I have talked to a number of very athletic people who rarely complained and now have advanced LD. I believe this is because without early treatment, the disease festers until eventually it causes neurological damage. At this Stage-3 LD, the patient will most likely require long-term treatment,

LD research and understanding is still in its infancy. This implies that the average doctor knows quite little about it. Of course, nearly all doctors will claim differently. Also, most Lyme Tests are inconclusive, so they will only add to the confusion. If your husband reacts positively to antibiotics, this can be a tell-tale sign of TBI. But please, if you do go on these powerful drugs, hit them hard otherwise the surviving pathogens will mutate and become resistant to the antibiotic causing greater problems later on.

As for his breathing problems, Babesiosis, also a TBI, is like malaria and generally affects one’s respiratory system. For more info, you can read http://lymehandbook.com/2010/07/26/malaria-like-disease-appearing-in-new-york/

Keep pushing and remain assertive,
Rob

We do not beleive that it is acually ALS. My husband is only 28 years old. Ticks, fleas, mosquitos, and practicly any thing that crawls, flies or bites absolutely loves him. He has always worked outdoors and been into hunting and fishing all of his life. Where we live, in central Georgia, we are surounded by wooded areas and are constently in contact with areas brone to ticks and fleas. Where he used to work, they would be constently cutting back bushes and trees on the side of the road. Always outdoors.

Just in your opinion, given the time-delay between the onset of symptoms to first diagnosis, do you think that the test could have been wrong? If so, what would be the best way to find a good LLD to try and dig a little deeper?

I have been hearing great things about the newly available Borrelia (Lyme) culture test being done by Advanced Laboratory Services – they have a website, you can probably find them using Google. Most other tests out there usually just look for antibodies – but if your immune system is compromised, you actually might have a lower chance of producing these antibodies. The culture is also able to detect all strains of Borrelia burgdorferi, not just the ones that are compared on a Western Blot (which is based on old lab strains from the 70′s). Their culture is 80% sensitive,, making it the most reliable test available for Lyme. And it is a direct test, meaning that if the culture is positive it is evidence that there was an active infection at the time the blood was drawn. (The CDC sees cultures as the “gold standard” for diagnosing all infections – if a doctor suspects a UTI, they culture your urine. This is the first time a culture has been available for spirochetes!). Rob is right, you need to find a Lyme literate physician in your area to get the test. I believe it costs $595. Consider yourself warned though, insurance companies tend to red-flag and deny test and treatments for Lyme =(

I am still playing catch up on the Blogger Log page. Please keep in mind that 20 years of having LD and 9 years of antibiotics has done a lot of irreparable damage to my nervous system.

My legs have not fully regained their strength, but I can stand upright now where I could not before. My mental clarity is as sharp as ever. My sleeping habits are terrific and my kidneys have healed.

I remain optimistic. Healing naturally is a slow process. Especially when it comes to nerve damage.

Rob