Friday, October 30, 2009

Interesting Site Regarding Dental Lyme

As most of you know I was incapacitated from dental sensitivities due to Lyme. These were wrongly diagnosed as neuropathic pain. A biologic dentist in California explained to me that I had Lyme infection within my gums and teeth which which altered the dental tubular function in these teeth. This was apparently commonly seen with Syphilis in years past. Like Syphilis, Lyme only affects the front teeth and first molars (upper and lower). Tubular dysfunction can result in horrific pain, as I can atest to. I lived through straws for 6 months.

Homeopathic gels and amalgam removal resolved my pain. I still have sensitivity to cold which is common with Lyme, but not the severe pain I had experienced from tubular dysfunction.

Here is an interesting site to check out about this topic. I am planning to research more about Lyme in the teeth to share with you.

Week 5: Dr J's Protocol

Okay week 5 is the hardest for me of this current protocol. It's the week where I do everything (everything I did last week with the addition of Bactrim DS and Flagyl later in the week), but only M,W,F, which makes it all bareable.

Adding Bactrim to everything I did last week (see below), brought on some shooting arm pains and a bit of apathy (Bartonella). I am happy to report that NO depression since starting Lamicatal 5 weeks ago. In fact it is exciting to see glimpses of my old self!! My sense of humor and joking are peeking out. I am even feeling a bit more social. I find myself saying things like,"Hey, lets do coffee next week." I am calling people back and sometimes answering my phone! (Only you Lymies would understand.) I am happy to report that I am getting excited about medicine again and accepted a speaking gig in July!!

So as the week went on I added Flagyl. With this I had more nausea, increased shoulder pain, neck/back pain, some sweats (but hardly any), some chills and heat, and definitely more ADD/hyper feeling- which was making it hard to focus. I increased my Lyrica last night (up to 125 mg). This has caused a bit of dizziness- but did sleep well and feel less disorganized today.

I talk with Dr J today about the next protocol. I think we are going to target Bart- while continuing Babs and Lyme forms of treatment. This is crucial to continue hitting all 3. I think that's why many don't get better. This and failure to address detox.

Wednesday, October 28, 2009

Week 4 on Jemsek Protocol

Okay so week 4 is a repeat of week 1- that is I do IV Azithromycin and Clindamycin with Mepron and Artemesinin (1000 mg twice daily) on M,W, and F.

After being off antibiotics for one week I started to get some symptoms back- some sweats, joint pain and more fatigue. I was actually looking forward to restarting antibiotics. Not sure if it was my imagination but felt more energy first few days on Clindamycin. I am also enjoying the relaxing effects of IV Azithromycin.

I am tolerating this regimen really well. I do get nausea if I have an empty stomach- so on M,W and F morning I am careful to eat a full breakfast before infusing (this is also good as I have to doing the ghastly Mepron with fatty meal).

Days off antibiotics I do the Lactated Ringers which takes about 3 1/2 hours to go in. I have started waking up early to start the infusion and going back to sleep so that it is in by 9 to 10 am. On the days that I do this I also do infrared sauna.

I haven't changed doses of Lyrica (100 mg at bedtime) or Lamictal (75 mg at bedtime)

Hard to know what is working but I continue to do very well i.e. stable moods, sense of humour is back, less sweats, and able to do more "normal" things and tolerate socializing better. I still mainly like to be alone and need a LOT of rest. Not able to think clearly like the doc I was - but one day I can see that will return.

Wednesday, October 21, 2009

Week 3 on Jemsek Protocol

Week 3 was the best ever! I felt great within a day or 2 off antibiotics. I felt normal again. Needed less sleep, more motivated and interested in things. I cleaned and organized. Ate well and basically rejoined the human race. Yes, I still have some joint pain- primarily my R shoulder and R hand at night and I did have a faint night sweat toward the end of the week. But it was SO nice to see who I am without antibiotics and Herxes.

This week, off antibiotics, is important as it is allowing my immune system (and liver) to recover some. I am hoping that these antibiotic breaks will stimulate my immune system to recognize some of the bugs swimming around and get "interested" in "doing something about it." These antibiotic holidays also let me see what symptoms remain- it is clear to me that I still have Babesia (sweats), and of course the Bart and Lyme but I am gaining control of my life! I can now plan and know that during drug holidays I can plan to be more social and reliable. This is huge for a chronic Lyme patient.

Week 2 on Jemsek Protocol

Week 2 was a little rougher as this week I added in Bactrim DS, 1 1/2 tabs on M,W, and F (in addition to the already pulsed Clindamycin and Azithromycin, IV- see below). In addition I do 1000 mg Artemesinin (Allergy Research) twice daily, M,W, F.

I had a little bit of irritability and moodiness and some R foot pain with spasms- primarily at night - all Bartonella symptoms. My R shoulder pain was also worse-- I gradually increased the Lyrica and Lamictal so that these symptoms were controlled.

I like his philosophy that "you should have some Hex, but it shouldn't be unbearable." These medications (Lamictal and Lyrica) have really helped my emotional sate, sleep and over all pain.

On the days off antibiotics I infuse a liter of Lactated Ringers (LR)- which helps me feel great- for the first time I have more stamina and interest in life! Maybe I am no longer chronically dehydrated and the LR also id helping to keep my body from becoming so acidic and toxic.

I am also doing infrared sauna (Dr J suggestion)- twice weekly. I body brush, do 20 mins elliptical and go for a sauna- then home to a detox bath (1 cup baking soda, 1 cup salt) for 20 mins.

Th and F I add in Flagy which is the worst days- more joint pain, some nausea and fatigue- but nothing so bad. The best part is that after the 2 days of Flagyl I have 9 days off all antibiotics!!

Wednesday, October 7, 2009

First week with Dr Jemsek's IV Protocol

I am now working with Dr Joe Jemsek, the infectious disease doctor highlighted in the documentary Under Our Skin. I think he is brilliant and can offer help to those of us with chronic Lyme.

If you read the posts below you will see that he uses pulsed treatments, M,W, and F with drug holidays for 1-2 weeks. I have just started my first week of intravenous and oral treatments and plan to blog about my progress.

Dr J likes all patients to write about their week, every week, to track progress in symptoms. You have to do this in 50 words or less.

My first week was really good- in fact, I can truthfully say that this was my best week since starting treatment 18 months ago.

I started with Lyrica 25 mg for pain and sleep and Lamictal, to help control emotional lability. I am not a drug taker by nature but on the Lyrica/Lamictal combo I slept very well and woke feeling better than usual. On these meds, I still had shoulder pain and joint pain- but it didn't seem to matter as I slept.

After 2 days, I started IV Clindamycin. During the first dose I hadn't eaten much and proceeded to feel very nauseated and had a horrible bitter taste in my mouth. The intravenous Azithromycin that followed made me very sleepy. Despite this after a couple of hours I was up and was well enough to enjoy a family dinner.

Next morning I was careful to eat a full breakfast before any IV's and I had NO nausea with infusions. Still some sedation but slept an hour and was able to get up and function around the house. I even cooked dinner! Best part is NO antibiotics on the next day.

In general on the pulsed therapies I am the very best I have been since beginning treatment 14 months ago.

Finding "the right drug"

I used to think it was a matter of finding "the drug." I now see treatments as a dance. Multiple drugs need to be used against all 3 bugs (Babs, BArt, and Lyme), in unison, so that the immune system can finally get better- they all 3 drag it down and just when you treat one, another raises its ugly head.

I was certain that my 5 months Mepron/Zothro and 18 months Artemesinin cured my Babesia--- well they didn't. It's in my liver and though I no longer have headaches and vertigo it is dragging me down while trying to treat Bart.

I think the best Bart drug is Levaquin and Dr J is planning to use it IV (which is very nauseating) - but we will pulse it in on M,W, F with drugs for Babesia and Lyme. Rifamipicin and its related cousins are also excellent for Bart. And Bactrim is good for Bart and hits Babs. Most drugs have cross cover coverage.

I really do think that the answer is going to be high doses, multiple drugs pulsed alternate days with drug holidays. I plan to work to develop satellite centers so that such treatments can be available to all. Currently most LLMD's are unable to offer unusual treatments but we can push for research using such therapies.

Please have any doctors interested in being part of research protocols with pulsed therapies, IV or oral, contact me at

Tuesday, October 6, 2009

Pulsed Antibiotics- The Future for Lyme

I am working with infectious disease specialist, Dr J (SC) and am excited to share his concept of "pulsed antibiotic therapy" and how he is treating me and hundreds of others, successfully, For the first time in over 1 1/2 years I feel I am getting my life back.

The 3 major players in chronic Lyme are Borrelia (Lyme), Babesia,and Bartonella. Sure we are also teaming with viruses, yeast, Mycoplasma, and other undesirables but he believes that if you can get the big 3 under control you can eventually get the immune system back into a functional state.

According to Dr J these 3 organisms are almost always present in chronic infections and fortunateley they divide slowly-which allows for dosing antibioitics every other day. He has been treating patients this way for the past 5 years with good results. He uses all antibiotics, orally or intravenously, on alternate days- typically M,W, and F.

I am currently doing Clindamycin 900 mg twice daily intravenously M,W,and F with Azithromycin 500mg, also intravenously. In addition I am doing 1000 mg Artemesinin and Mepron (2 tsp) orally twice daily on theses same days. After one week of this, he had me add in (oral)Bactrim DS, 1 1/2 tablets again M,W, F. I also add Flagyl 500 mg twice daily on Th and F (orally). These drugs are treating Babs, Bart and Lyme forms.

On the days when I am not infusing/taking antibiotics he has me infuse one liter of Lactated Ringer's solution which he feels helps buffer the body (help it be less acidic) and "flushes" the organs.

Every 2 weeks he has me take a full week off treatment to see how I am and this (he believes) allows the immune system an opportunity to regain strength. How you do on the week(s) off allows him to get a glimpse of how well the immune system is recovering. This is a technique he used for years in his HIV patients and I think it makes a lot of sense as a physician.

The key to this disease is not to eradicate every last evil bug- rather it is to get the infectious load down low enough so that our immune system can recover and take over its job. Antibiotics are great but if they are poisoning your livers, and suppressing your immune system they can be counter productive.

I believe the reason some of us do not recover is: the 3 big players are not addressed and the immune system is not brought back.

Regarding the first, it is great to test for co-infections but if negative these tests should NOT preclude treatment. All patients with chronic Lyme should be treated for ALL 3 big players (Bart, Babs, and all forms of Lyme). Demand treatment for all 3. Babesia is the hardest to eradicate ie long term Atemesinin is needed (I'll post more on this).

Regarding the second, the immune system should be supported as much as possible, ie transfer factor?, treating for yeast intemittently, taking breaks from antibiotics. If the immune system is not supported you will keep "chasing your tail."

Thus far, I feel the best I have since becoming ill summer 2008. The best part is that I can sort of get my life back- as I know which days I am infusing. He also has some novel ways to deal with herxing and detoxing (see my next post).

My hope is to get other doctors involved in clinical trials with his protocol. I am meeting with a doc next week here in Boston to see what can happen. If you have a doc that may be interested let me know. It would be great to get some other infectious disease docs involved.

It's time for us docs to stop fighting and start communicating and working together!