What Now?

As we move from accepting this diagnosis of Lyme Disease to treating Lyme Disease, I find myself still lost in the internet trying to make heads or tails of all the information there is and which way is best to approach this.  Do we start simple and hope for the best? Who do we see to do these treatments?  What is the success of these treatments?   Wow, and I thought confirming a diagnosis was difficult.  😓

The most common treatment?  Antibiotics.  But already here we read so much conflict.  Some go with just a dose of Doxycycline, others say two drugs are needed (commonly Doxycycline and Amoxicillin - which Rebecca is allergic to) and still others have a whole concoction of antibiotics.  Initial standard treatment is about 6 weeks, but then some say 8 weeks and so very often once a person quits, the symptoms return, and they have to start up again for another couple of months.  I read of many cases where people end up on antibiotics for one, two or more years. (gulp)!

Herbal treatment is another option.  But again, mixed results.  This has more appeal in that it is not as hard on the body as antibiotics.  But its definitely hard on the pocket book, and with our long track record of being exception to medical rules, it's a tough one for us to justify.  Rebecca is currently taking some herbals, with no effects.  Not to focus on money, but just so the reader understands, that's almost $700 after 2 appointments and supplies.

Why is this all so hard?  Why does everyone have a different treatment?  Why are many of these treatments not working to cure on the first attempt?  The simple answer: the Lyme bacteria is extremely pervasive and resilient.  Lyme bacteria can change form and become a cyst. In this form it is protected from being killed off by the immune system and therefore can survive dormant for long periods of time.  The bacteria can also penetrate cells and enter the area inside the cell wall and this too allows it to hide from the immune system.  The bacteria can spread quickly and are also able to survive in biofilm forms.  Not all antibiotics can penetrate the cell walls, or kill the cysts or get at the bacteria in the biofilm and so this is why a variety of antibiotics are needed.  Even with all these different antibiotics in the system, there still seem to be many patients who do not recover after the initial 8 weeks … and go on to months or years of every changing antibiotics, and all the others supplements to try offset the effects of the Lyme and the damage of long-term antibiotics on the body.

As I mentioned in my last post we are thinking to wait until the summer to go ahead with treatment.  Deciding on a treatment and making a plan of action has been a hard decision to come to with many factors weighed out.  Rob and I have spent many hours in discussion on top of my gazillion hours of internet research.  Rebecca has been slowly learning and listening and Marietta has been sure to chime in her opinion.  This afternoon we sat down together (minus Matthew since it's all too complex for him) and discussed all that we have learned and tried to come up with a plan that Rebecca feels comfortable with.

After all of our reading and also talking to a couple of Lyme patients who have tried antibiotics, IV antibiotics/therapy, herbals and whatever else they could find only to still continue to battle with LD, we are strongly leaning towards the hyperbaric oxygen treatment (HBOT) with Rebecca.  One of these Lyme patients has done this treatment and is currently doing well after it.   She has not been in remission long enough to truly confirm that this treatment works, but at this time she is doing better than she ever has with any other treatment .. and she has done many!

The treatment plan that we are currently planning to do would take us to Edmonton, Alberta to the Canadian Hyperbarics Clinic and Apothec Wellness Clinic.  Both of these clinics operate together as a team to fight LD at the Edmonton General Hospital.  It is an 8-9 week intense treatment plan, that involves being in the hyperbarics chamber EVERY day.  Within two weeks if there has been a herx reaction, then we know that Rebecca has LD and/or co-infections.  After two weeks if there is no reaction she will continue treatment but be considered “suspicious of LD”.  After 4 weeks, if there is still no reaction she will go from suspicion to “no LD” and will be discharged from the treatment plan.  

If Rebecca does herx we will have confirmation of LD and will carry on with the HBOT as well as treatment by the Apothec Wellness Clinic.  The Apothec Wellness Clinic supports the work of the Hyperbaric Clinic by helping the patient through the herxing and healing process.  On top of being in the hyperbaric chamber every day, once a patient has begun herxing the Apothec Clinic then steps in to help with detox and supporting the gut with supplements, vitamins as well as whatever other therapies are helpful -  like massage therapy, infrared sauna, full body hypothermia, PEMF (Pulse Electromagnetic Field)… all things I haven’t even had a chance to look at or try to understand at this time.

Because this treatment would likely take us to Edmonton, we are trying to wait until the summer holidays to begin treatment, but this will ultimately depend on how Rebecca continues to feel.  If at any time things begin to get worse, then we would start sooner.   We still have other decisions that we haven't come to complete conclusions on, such as whether to do some more testing, or whether to try a herbal combination (samento and banderol) to see whether it makes her herx and help to confirm the LD diagnosis.  While this could help us, herxing could really stir things up and make it harder for Rebecca to function and she would really like to attempt to stay on track with her school.   So we are still sitting on the fence on some of these thing.   Besides schooling, another reason we feel waiting is good is because we can see how effective this treatment continues to be on the Lyme patient that told me about it.  

There is also a bit of a practical reason for waiting until the summer.  With Marietta still recovering from her concussion last January, it is a bit difficult for me to leave as she needs to be driven to school each day and to appointments.  And, dare I admit it, Matthew has been having a lot of appointments lately as well for what they believe is vestibular neuritis.  Leaving during the school year just makes it more difficult for the other kids and waiting makes it easier to hopefully work out some of these issues and appointments in the next few months.  And then of course, there is the financial aspect that we have to work out.  It's a big chunk of change, but in the long run it's probably the most economic treatment.  For $17,000, there is a complete package of HBOT, herbals, vitamins, massage, etc. Another Lyme patient has told us that of all the treatment she has done, this one was the cheapest, and most effective.  

There's more to be said about HBOT, but it's late, and I need to get some sleep.