Today I had my first appointment with the Lyme Specialist in New Jersey!! It went very well and he is a very knowledgeable doctor who has treated over 22,000 people with Lyme. He looked over my June blood work taken by my Neurologist and said it was a very clear positive not an "inconclusive positive" as my Neurologist explained it. He said I was actually very lucky to get a clear positive off that test as it rarely picks up the Borrelia bacteria. So I finally have a firm diagnosis of Lyme Disease! He is also pretty sure based off my long list of symptoms (I have about 25 of the 30) but especially my breathing problems that I am also suffering from some other tick born bacterias that may have also been transmitted in the same tick bite. He drew more blood and has sent those test away to the California Lab that I mentioned in an earlier email which is the most accurate in the country for Lyme and other tick born bacteria blood testing. That unfortunately has to be paid for out of pocket and cost $415 but it is vital to my treatment as he has to treat me for all of the bacteria that is there or all my symptoms will not go away. The basic run down of what he told me is as follows (very smart doctor but not super talkative so I had to ask a lot of questions...here is what I found out):
* He is positive I have had this for a very long time based off my symptoms and that I have been mis-diagnosed all these years.
* He is starting me on oral antibiotics (I will take my first in the morning) and thinks I will have to be on them for a long time...based on what we could get from him, I think he is thinking a year or more. He said I have so many symptoms and the bacteria has been in me so long that it will take some time to try and kill it all. He said this is a very aggressive approach but knowing what this bacteria can do it is necessary to prevent permanent damage and to give me back my quality of life.
* He would have put me on IV antibiotics for 4-7 months but insurance companies will not go longer than 30 days anymore for Lyme patients because they don't want to pay for it. He said he did not want to put me through the process of getting a pick line if it was only for 30 days. After having a pick line when I was pregnant with Tyler, I would not go through that for only 30 days!
* He is very happy with what I am doing nutritionally and encourages me to keep on going as it will help boost my immune system especially when I am on the antibiotics. He also encouraged me to keep seeing my Homeopathic doctor and encouraged some other natural approaches along with the antibiotic regimen.
* The other major thing that will begin happening is something called the Herx reactions which happens soon after you start a new antibiotic and may recur several times during the duration of the time you are on it. Basically it is a heightening of your symptoms that makes you feel awful for a few days to weeks depending on how long it last. It is a good sign because it means the bacteria is dying but releasing toxins along the way thus making me feel worse temporarily. This will happen on and off throughout the time I am on the antibiotics. My greatest concern with this is a more serious breathing episode...please pray for my breathing to remain stable!
* I will continue to see him every month to six weeks and he will change out antibiotics according to how my body responds symptomatically. We were gone today for about 7hrs so it is a days event each time I go!
* Cost of Treatment: We shared what we do with the Doctor and he was so kindly willing to discount the cost of the visits. He charged $200 today instead of $300 so my follow up visits will probably be around $65 each instead of $95. Gas and tolls for each visit will probably range around $100. My Homeopathic treatment will probably range around $100 month. My blood work so far is $415 and he will do more later but I am unsure what the cost will be. My supplements are about $80 - $100 a month including the probiotics and vitamins. The antibiotics should be fully covered as long as my insurance does not start giving me a problem, praise God for that!! Dan has already begun making phone calls to start raising this additional $365 a month along with the $615 we have to cover by next month. Please pray with as as we trust the Lord to supply for these needs!!
* Prognosis: He is optimistic that through all this treatment I should regain full health again. I am aware of the odds for late stage Lyme sufferers and recovery is based on the person as everyone reacts differently to the antibiotics and other treatments. I may deal with relapses or some recurring symptoms later on (which can also be treated) but right now I am thinking immediate relief of the symptoms that keep me from my life and my family. Trusting God for a complete healing in His time!!
It is exciting to FINALLY have a clear diagnosis after 17 years of illness! I don't know what this journey will look like for the next year or two or for the rest of my life for that matter but I am thankful that we have been pointed in the right direction and the correct treatment has begun!
Thank you all for your continued prayers. We will really need them as we work through the next part of this journey!! We will keep the updates coming!
PS. Please pray for us next week as we leave Saturday to spend a weeks vacation with my parents in Vermont. I am praying I do not have a severe Herx reaction that ruins the trip...it is a much needed break for my parents and Dan and I!!
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