Why has Ashley had to have her PICC placed 3 times, you ask? Well, the first time, her doctor was not a LLMD (Lyme Literate Doctor) and he only had her take the i.v. meds for a month as per CDC guidelines. Our hopes where higher than ever, as she promptly felt better after removing the PICC. After a few weeks of bliss, the Lyme bacteria realized that there was no more antibiotics in her body and it came out of it's hiding places; her symptoms were worse than ever. Without a LLMD and no doctors willing to continue treating her Lyme disease out in Utah, we moved out here to CT to find someone who could help. Since Lyme originated in CT, we felt moving here would be our best chance of getting the treatment she needs. We quickly found out however, the controversial nature of the Lyme epidemic was worse here than we could ever have imagined. After going from supposed LLMD to the next, all we heard was there is no such thing as "Chronic Lyme disease", and "it's all in your head". These are common phrases to hear from doctors about Lyme.
Why is this so, you ask? Without getting into the particulars, lets just say that politics is the biggest issue. These supposed "LLMD's" that we were seeing were forced to form a hard-line on their beliefs of Chronic Lyme and how to treat it properly. Crossing this line would lead to sanctions, court dates, and lost licenses.
It took a full year after moving out here for us to finally find a doctor that could help! Through the connection of our local insurance agent Andrew Bolles, we were sent an angel in the form of another Lyme patient. That angel was Heather Staples. Through her association with Ashley, we not only found the right doctor(s), but we also got the treatment she so needed and deserved. Her 2nd PICC line was placed in Sept of 2010.
After 2 months of treatment, however, Ashley started having problems with her gall bladder. The gall stones were so bad that her Dr decided to pull her PICC so she could have the gall bladder removed. Again, Ashley's symptoms improved right away, giving us the false sense of hope that we would be able to move home to Utah in 2011. Immediately following her gall bladder surgery, the Lyme came back with a vengeance. It has taken her 5 months to get her strength up enough to get the PICC placed again. We are happy to say that she will be receiving her 3rd PICC line treatment starting this next Wednesday, April 6th 2011. We pray that all will go well! Since she has a collective 3 months of treatment already, we hope she will only need 6 months or so of treatment. Given the progression of her Lyme after 10 years, it is very unlikely that 6 months will be enough.
In other news...
As most of you know, my health has been declining over the past year as well. In addition to Non-alcoholic Fatty Liver disease and Sleep Apnea, I have been diagnosed with the following this past year:
- Chronic Rhinitis due to allergies
- Hypogonadism
- Mono
- CMV-alternative form of Mono
- Chronic Prostatitis
- High Triglycerides
- Pre-Diabetic
- Insulin Resistant
- Double vision-went from needing glasses to read at times to not being able to see without the use of glasses.
- Sleep Apnea has worsened
- Rapid weight gain-40 lbs in 3 months!
There is more, but I think you get the idea! Why am I listing all of this, you ask? The answer is that I am listing these diagnoses in preface to my newest diagnoses. Can you guess what it is? You guessed it! Lyme!! We are not exactly sure how I got it; some studies show that Ashley could have given it to me. It could also be from knocking doors in Boston in the Summer of 2009. I just think it is interesting how mostly all of my health problems started after we moved here. The good news, we caught it early so all I should need is 1-2 months of oral antibiotics! The other good news is that through moderate exercise and good eating, some of those symptoms listed above have either gone away or lessened. For instance, I have lost 20 lbs since December, I am no longer pre-diabetic at this point (although I am still insulin resistant), my triglycerides have gone from 280 in September to 163 in March (the normal range is lower than 150), my sleep apnea is being treated correctly, and my testosterone levels are normal currently; all this without treating the Lyme. The other symptoms are being treated as well, but they do not seem to be improving as of yet. The most important stat, though, is that ALL of my liver enzymes are in normal range, in fact they are looking better than they have in 6 years! Diet and exercise are the main culprit of this change.
In short, Ashley is resuming her treatment, I am just started an oral antibiotic treatment for Lyme, and we are testing Cole for Lyme just in case. You can never be too careful!
As far as anything else going on in the Whimpey household? We are just living life, happy to be here on this beautiful earth. We miss our family, but we know that we are doing the right thing. We know this fact more so now that I have been diagnosed as well. Hopefully, all will go well and we can return home in 2012. Let's hope!
