Questions as I begin healing w/o a LLMD

Hello PennyPru,

I'm sorry you are having such a tough time with your symptoms right now. It seems like the summer is bringing out the worst in my symptoms as well. I wonder if it has something to do with the heat as Lyme does not like it hot! :) I don't have any medical training, but I'd be happy to write about some of the things I've learned from all the research I've been doing lately.

I think treating on your own is going to be extremely difficult, but I can completely understand the stresses involved with being unable to afford a top LLMD. One thing that I found is that a lot of ND's (naturopathic doctors) are much more helpful and willing to treat chronic Lyme and they may also know of MD's who are willing to treat Lyme long-term. Sometimes insurance covers them and they can prescribe in the US as well as use herbs and natural remedies. There is also the option of looking into out of state LLMD's who may take insurance. There are very few, but some still do. Unfortunately I think it will be next to impossible to convert a non-LLMD to a LLMD.

Some of your symptoms tend to be indicative of a long-term or later stage infection. Particularly the twitching and neuropathy. I am surprised that your doctor waited over 2 weeks between the presence of the EM rash to restart doxy. Almost every doctor would agree to treat immediately with an EM rash.

From my research, I have seen that doxy alone in a low dose (like 200mg) converts Lyme into the cystic form at a rate of 200%. This makes you temporarily feel better until the spirochetes sense that it's safe to re-emerge (when you go off doxy) and they start to multiply again. At a recent presentation by a LLMD, it was suggested that a new bite should be on Flagyl or Tindamax for the cystic form, Zithromax, and Doxy. This way all three forms are being attacked.

That protocol does not address co-infections like babesia, erlichia or bartonella. Some of them require completely different medications. I have heard that most people have at least one of the co-infections and it is uncommon for someone to have pure Lyme according to Dr. H. in NY.

Another option that you could do is a strong natural protocol. You will have to be very careful with the dosing and also any interactions between any other meds and supplements you take. Healing Lyme is a book that's geared toward patients that want to treat with herbs on their own or with a practitioner.

For pain, I use advil. I find that for headaches it does nothing to help. For herxing it does nothing either. It can make me feel slightly better for a few hours to get up out of bed on a terrible day but overall I have not found anything OTC that works well on pain. I am afraid to take any prescription pain medications so I end up trying to work through it and then sleep or rest as much as I can.

Good luck with your treatment. I hope you will start to feel better soon.

For what it's worth, my insurance covers my LLMD (internist) visits at 100% once I've met my deductible. As for co-infections, I would look through the ILADS website - there's a section on co-infections, and sort of use common sense to guess which ones you're more likely to have (if any). Bartonella and babesia are the ones I hear most about, so I'm guessing they're more common. Psychiatric symptoms (especially anxiety) seem to be a red flag for bartonella. Air hunger for babesia. You can just make a list of these infections and bring it to your regular doctor and they can be done through regular labs like labcorp or quest (which is usually relatively inexpensive with most insurance). Otherwise there is a co-infection panel through Igenex which is fairly expensive (I want to say around $600) - insurance usually kicks back some of it but unfortunately not all of it.

As for the lyme cycle...it tends to sync up with your menstrual cycle (if you have one) - your immune system is most active just before the end of your cycle. Some people also swear there's a connection with moon cycles (I will say that my symptom were flaring up like crazy just before the last full moon!).

I'm pretty stubborn when it comes to taking pain medication, so I've got a few tricks up my sleeve for different kinds of pain. For that flu-like aching pain, I turn to epsom salt baths. For those stinging nerve pains, I like contrast showers (which is also really good for your lymphatic system). For inflammation (usually joints), I eat black cherries (or drink the juice, which is good before bed for sleeping, as well!). Yoga - or just stretching, also helps a good amount.

You could also try printing out a copy of Burrascano's treatment guidlines and bringing them to your doctor (I'd recommend reading through them for your own reference as well) - there it'll say that a lower dosage of doxy just isn't enough. You could also try combining abx with herbal protocols - Buhner and Cowden use somewhat similar herbs - I can't vouch for quality, but I know there are some cheaper options and good deals (sometimes I find 2 for one deals, etc.) if you shop online, or buy herbs in bulk. There's also the zhang protocol.....if you do a little research you'll sort of see that there's a lot of overlap between all the herbal/natural approaches to lyme. Specifically, I've always liked cat's claw/samento, and a lot of people on here mention taking it.

Hope this helped some (sorry I'm a little disorganized/scatter-brained today!)