Neuropathy and coinfections

Our doc would prescribe either zithromax or biaxin 500-1000mg p-day, 200mg p-day of plaquenil for babs. We added in artemisinin at 400mg p-day. We spread the meds and ART out over the course of the day.

Generally, babs treatment is 3 weeks on and one week off. You'll want to detox on your week off. Our LLMD prescribed this regimen of 3 weeks on and one week off a total of 3 times consecutively. Sometimes longer if still symptomatic. Babs can be hard to eradicate and start on lower dosages to minimize herxing and slowly ramp up to doctor prescribed levels.

My son was 14 when first ill, treated for a year until symptoms were gone. He contracted mono some months after this and his symptoms returned again so he's in treatment again.

You can beat this, I know many who were ill longer than you and are leading normal lives today. Lyme and co-infection treatment is a marathon not a sprint, unfortunately. By all means have your children checked by the doc. In young one's, lyme can first manifest as ADD-type symptoms or moody behavior. You could always have them tested by Igenex to make sure. Lyme can be passed invitro, many LLMD's know this.

I also have the air hunger, have had it for a long time and I'm relieved to see that others have this, too (although I don't wish it on anyone). I have a lot of CNS issues like small fiber, large fiber and autonomic neuropathy, hands and facial muscles that don't operate properly, limited use of muscles for laughing and coughing, weird things like that. I also have severe spinal issues and have several impinged nerves right now.

Just recently I learned that the gallbladder that I lost 3 years ago due to it being filled with many stones that also traveled through the biliary tree was also due to Lyme. Any my seizure, my abnormal brain scan, etc. Amazing.

Anyway, thank you for the information about the babs treatment - that will be really helpful.

Lori

Isn't it amazing what this lousy disease affects? I also have gall bladder problems, I wonder if that's the lyme too.....

it's just amazing how many people just don't get "it"....how hard day to day is.

The worst is the cognitive issues. I worked on a letter to one of my doctors yesterday and today. It took me 15 hours total work time. In the past, this would have taken me an hour. And I could have done three other things at the same time. No one believes this though, what we're calling "brain fog" but is clearly cognitive dysfunction. There is no way I can do what I did before, even if you take away all of the other symptoms, which are disabling by themselves. grrrrrrrrrr...

I have had neuropathy head to toe, literally. LD can cause neuropathy but so can at least two of the co-infections, Bartonella and Ehrilciha.

Another possibility are active viruses that are very common with LD, especially if you have had any cortisone treatments. Viral co-infections are common and to name a few CMV, EBV, HHV6. Viruses are re-activated commonly with a immune system that is "down".

I have all of the above mentioned co-infections, but have noticed with treatment, the nueropathy is coming and going more often.

Take care.

I'm in a situation. I had a big bullseye rash in the late 90's but a doc told me that I couldn't get Lyme in Michigan. In 2003, I got a ton of severe symptoms diagnosed as fibromyalgia. Last year, I started getting a range of weird neurological issues.

My LLMD got my IGeneX tests back today and I tested positive on only a couple of areas (I didn't write it down, I was too upset). So, the results are inconclusive. My CD57 is low. I had the bullseye and I have all these symptoms that have me on disability. Could I be taking something that is getting in the way of this test? Or is there something that I might have done in the past that is doing this? My LLMD is guessing that my immune system has taken such a beating that I won't test positive right now.

Three things upset me about this. First, I have to take antibiotics by mouth since I can't get IV antibiotics approved by my insurance company without a positive result. Secondly, the tests are not cheap and I will have to pay for them again and again until they are positive. Third, I want to be tested for coinfections but I am not going to pay that hefty price until I at least test positive for Bb because I need the coinfections tests to be accurate. So, maybe I can take antibiotics that also help with a coinfection that matches my symptoms...or something. Right now, I am only on doxy.

Anyway, I'm bummed today.

I mean, if you had the bullseye rash, and I know from talking to you many of your symptoms, it's a no brainer.

and I've also heard thaat you need to get the co infections treated before you can make a dent in the lyme....someone correct me if I'm wrong here....kinda new to all this

hang in there, I know how you're feeling. I've been in a really bad place lately myself....

My LLMD said that insurance companies should accept the CD57 because he thinks that it's the best indicator of chronic Lyme. But chronic Lyme does not exist! It's all just so frustrating.

I wonder how coinfections can be treated without testing - by symptoms? Again, I don't trust tests right now because if I can't even get a positive Lyme test then the coinfections tests might all turn up negative, too.

That's why I was wondering if I choose the coinfections that are most closely related to my symptoms and request those meds. I don't know what is done in these cases. Maybe I'll start a new post about this.

Very discouraging...

So, just 7 days until your first appointment. Have you ever been tested before? I forgot what you told me. I had two ELISAs done, one of them four years ago and the other one last fall. Both were negative, of course. That's the one that usually negative unless it's within a month or so of the bite. My llmd put me on light antibiotics for a month before the test and it still didn't help. He doubled them after a month and they're not doing anything, I'm not even experiencing herxing. It's probably too soon. Anyway, I hope your llmd uses IGeneX and you might want to go on antibiotics for a month first, since that's *supposed* to help. Do you have very far to drive?

I did 14 tubes of blood work a month ago....of course, the stupid lab never sent it to my llmd! so I called and chewed them out, they are supposed to fax the info...and I sent a copy of my records that I got....

when I go to him, he draws more blood to send to igenix. this stuff he did was just to rule out other things I think....EBV, CBC, etc.

I have to go 2 hours to see him....but if he can help me and is good....I'd go much further....me neighbor grew up with him (small world), he doesn't know him as a doctor, but he said he's a really good guy, real nice, compassionate, etc....so we'll see.

Don't be bummed. LD and co-infections are not to be based on a blood test anyway. I understand that it helps you for peace of mind, but this disease has always meant to be diagnosed based on symptoms. Here is a list of possible reasons for a false negative test, but still, don't worry about the test, you SYMPTOMS scream Lyme: http://www.anapsid.org/lyme/lymeseroneg.html

Doxy is a good first line choice. Are you seeing a Lyme Literate MD? If so, he/she would know (without a positive test)that you have LD especially after reporting a bulls eye rash from the 90's and a diagnosis of Fibro (Fibro is Lyme).

I have been on Biaxin/Amoxi. A slow but very effective combo. I have insisted staying on it because Biaxin kills some of the co-infections (except Babesia) and the Pencillins are now being reported to have a calming effect to the nervous system. These two antibiotics have taken me 10 months to go from 1-2 good days per month to 21 good days last month. Now that I am feeling more "tolerable" levels of pain, I have asked to start Bicillin injections. Your insurance may cover them if given in an MD's office or in some cases, insurance will cover them if you choose to do your own injections at home, like I have. Bicillin is proving to me as effective if not more so than IV and much safer.

Also great for neuro symptoms is methylcobalamin injections (B12) only ordered from compound pharmacies and NOT to be confused with cyancobalamin, a crappy version sold at most pharmacies, not strong enough to do anything. Methylcobalamin is being found to be healing to the nervous system. You may not "feel" any different from these shots, but they are very good for your nervous system. Many people will quit these injections because they don't "feel" any different, but again over time they are excellent for your CNS. Dr. Burrascano recommends (I believe) 25mg every day for 6 months. This is considered a very large dose, but very effective. Here are his treatment guidelines, that I refer to often, print them if you can (about 35 pages) you will find it very imformative.: http://www.ilads.org/burrascano_0905.html

Don't stress, if you have a good LLMD you can request the above. If you need an LLMD email email (at site below is a contact link)and I can refer you to someone with a list of LLMD names.

Other causes of neuro symptoms are active viruses,I have 3 and take Valtrex for them.

This will take time, I cannot impress upon you enough-time, time and more time is the name of this game. But slowly and steadily things will improve.

Take care - (oh, by the way, I also was diagnosed with Fibro 10 years ago and my sister was as well, we both have LD)

If I can help any further, let me know.