LLMD Doc Visit - Confused

Hello,

So I had my LLMD follow up visit and we went over my IGENEX results which said I do have Lyme along with a Babesia co-infection. I do not know if I will be going with this doc for treatment, the last two appointments I have had him have felt very rushed. Anyway, he said that we should start on ABX treatment and he would give me two kinds, one for Lyme and the other for Babesia. He also sold me something called A-BAB and told me to start taking it right away (he didn't really explain what it did). What confused me is that he said the treatment would be for 3 months. I have had neurological untreated lyme for about 12 years now. I was very surprised to hear him say treatment would be 3 months and he expected really good results. From everything I have read, it seems untreated lyme can take a very long time to treat. I do have an appointment with another LLMD in a few weeks. I was going to compare and contrast. All of this is costly (both time and money) but I just want to make sure I choose the right doc and make the right decision. At this point my symptoms numbness, tingling, twitching are 90% better with diet changes, acupuncture (2x week) and Chinese herbs. I am debating if I should even start the ABX treatment?? What I am left with is some body twitching, anxiety, and my immune system seems to be weaker than most. I have just had a real bad sinus infection/cold that that no one else in my household got.

what would you guys do? Antibiotic treatment? Was that protocol from the doc pretty standard?

Thanks in advance for your response

thanks for the response Revive. Yes, I am desperate to get better. But I worry about taking ABX at all. I already have a weak immune system and I am scared its going to completely wipe me out. That and I am very prone to yeast infections (TMI) makes me think I would be miserable on them. I think its the anxiety in me that over thinks things and just worries about everything.

Hi cccmama, You need to have confidence in your doctor. IMHO 3 months is not long enough to treat a long-held neurological Lyme and Babesia infection. While your symptoms seem not that bad now, you would probably find it wouldn't stay that way over time.

On the other hand, treatment will probably bring out more symptoms as you heal. You really should be looking to get completely well, not just living with these diseases. While the antibiotics seem destructive, they are not anywhere near as bad as the damage the Lyme and Babesia are doing.

That A-BAB is part of the Byron White Protocol. It is very powerful, increase your dosage slowly (literally drop by drop)! Perhaps you would prefer to go the herbal route?

In any case, at least you have a clear diagnosis. I hope you will chose to take the treatments.

Hi cccmama3000 -

There are good posts in response to you already… here are a few more thoughts:

I, too have lyme & babesia, and bartonella. The babesia is a tricky one and I think there are similarities in our sx because of the babesia. I struggled with chronic sinusitis and bronchitis for a long time and determined it was due to fungus/mold and I've been treating it successfully along with the lyme. I'm on A-Bab too along with many other things...The less yeast/fungal overgrowth, the less chaos going on and the more my immune system can focus on the lyme & co. So my response is from that perspective.

Your diet changes, acupuncture, chinese herbs approach is great. Glad you're getting results. And I agree with others—you might want to look for a different LLMD. 3 mos isn't a bad trial period for tx but it is doubtful any 3 month tx is long enough to "cure" anything, in the lyme & co. world. So that doesn't sound right. And when I meet with my lyme doc, it's a full hour appt—there is simply too much to cover quickly. I think most LLMDs require longer appts than regular docs. It's great that you're getting a 2nd opinion—let us know how it goes.

I'm also agreeing with others that you will probably want to continue some form of treatment—either abx or herbal long term. And you'll want to consult an LLMD. I've read many anecdotes from people who have self-treated but this is some serious business and the lyme & co chaos brings on so many other systemic problems, you really need a specialist. I think a lot of us are seeing an LLMD AND a naturopath and also specialists like cardiologists, ophthalmologists, endocrine or gastroenterologist specialists…

The cost is astronomical, yes. I think there's a recent thread about that. There are some very savvy lymees on this forum with many good ideas for cutting costs.

See this thread:
www.healingwell.com/community/default.aspx?f=30&m=3143845

Sinus infections, mold sensitivities, yeast/fungus problems go hand-in-hand with lyme & co. I think the imbalances the infection creates just make it harder for your immune system to keep everything in balance. I've also read that the infection creates toxins that harbor fungus, etc.

Anyway, it's pretty important for you to treat the fungus. It's tough to tell the source sometimes but my sinusitis and yeast overgrowth in my gut was from a fungus. Once I started taking anitfungals most of these symptoms went away (sinus pain, post nasal drip, ear crackling and ear aches, throat ache, red sensitive skin on face, neck, chest, arms, skin peeling) and the vaginal yeast overgrowth and gas, bloating, etc in my GI also went away nearly completely. My treatment was diflucan 200mg/day, substituted for ketoconozale after the 4th month, Nystatin powder 500,000u (coats mouth, throat and doesn't have all the other crap in the capsule), SyFungin homeopathic nasal spray, Sydetox homeopathic fungus detox, STRICT no sugar, no simple carb, no grains, no dairy diet.

I've also read in several resources that it takes YEARS sometimes to eradicate a yeast/fungal overgrowth. So, I'd expect that for long-term results to stay on whatever program you develop for quite awhile. ESPECIALLY if you're taking abx. The comments about mold sensitivity are spot-on. It could be an environmental exposure or a genetic sensitivity but likely something else you need to consider. Dr. Shoemaker's website has some great info, he's a mold specialist:
www.survivingmold.com

Mister Mike I cannot tell you how much I LOVE Cholestyramine! It has really helped me. I just found this website and posted it in another link but I thought that this is a really useful tool to all of us:

http://www.vcstest.com

It tests for exposure to neurotoxins. When I take Cholestyramine I feel better within 30 minutes. I kind of stopped and have been doing only 1 per day but now that I failed the above test twice(!) I will start doing it 3x per day like I was before. Hope this helps!