I am writing here in frustration. I feel like i have been through the wringer and back.
My journey started in December 2013 when i miscarried with a child. I felt weird after the miscarriage and just put it down to hormones.
Two months later the symptoms still hadn't gone away and i thought something was very wrong. I felt constantly spaced out and had weird light sensitivity to indoor lighting. Everything just looked a bit off.
I started seeing a naturopathic doctor who thought i might have a yeast overgrowth issue. I went on a yeast protocol for a while and nothing got better. I was then put on some other naturopathic stuff for viruses etc and still nothing improved.
She then started to think of other possibilities and suggested lyme disease. I didn't really know much about it but i didn't think that was what was going on with me.
I knew all the classic symptoms that are portrayed and thought "Well i never had the rash so it can't be that, i had no clue back then."
I also saw another family doctor who told me she thought i had a nasty sinus infection and put me on ceftin. After taking it i felt 10x worse. The spacey feeling was so much worse, i had severe anxiety, i felt like i was going to die.
I started looking up ceftin and feeling worse as a side effect and hit a thousand articles about lyme and a herx reaction. I was starting to really think at this point i had lyme.
I went to another doctor who i was told knows about lyme and she ran the western blot and cd57. The western blot was negative and the cd57 was 62. She told me people with chronic lyme usually have below 60 so she said she didn't think i had it and diagnosed me with fibromyalgia.
I then went to see an LLMD about 5 hours away who i had heard good things about and he said clinically he thought it was lyme and did igenex testing. It came back positive.
After that visit my husband and i separated and i had to move back with my parents and i couldn't see him anymore due to funds.
When i got a little bit more on my feet i was recommended another LLMD doctor in another state who takes insurance so things may be more covered, and i got on his waiting list. The drive wasn't that far either so i felt very hopeful as i had heard very good things about him.
3 months after being on the waiting list the doctors office called back and said that he was canceling all patient appointments due to some health issues. I was devastated. I thought he was the only shine of hope i could have for getting better and relatively close, and i had waited so long.
After talking with my parents i decided to go back to the previous LLMD who was out of pocket. My parents helped me with the costs seems i do not work currently. The first appointment went well. Second appointment i go back to discuss and talk about treatment and getting on antibiotics.
My parents and i drive down last Monday and my appointment was Tuesday and i stay over night seems it is a bit of a drive and we didn't want to worry about driving there the day of my appointment.
2 hours after getting there i get a call to say my doctor has been taken to hospital and has canceled all his appointments for the next day so he won't be able to see me. The office then said he would be calling that week when he is well enough to do phone consultations. I never got a call.
Monday just gone i called again to ask what was going on and they said he is still getting the list together and i will get a call as soon as he does, but a new patient in a forum i belong to said they called for a new appointment and were told they had to go on a waiting list as they were closing temporarily.
I have symptoms now i didn't have a year ago, neurological ones that seem to be getting worse. I am living in fear for my health and i just don't know what to do. Whatever doctor i have tried to see an issue arises. Sometimes i wonder if i am even supposed to get better. I know people can't really offer much help, i guess i am just venting. I just want to find a good doctor to help me.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am so sorry to hear your story. How unfair for you to lose 2 docs like that. Have you posted on this forum in the section entitled 'Searching for a Doctor"? I know you will get some help there.
Praying that you will get the help you need. Posts: 2386 | From New England | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To takethat89, if you are willing and able to fly to Washington, D.C. there is a good lyme doctor near there who can see you in a few days.
I guarantee that he will not go out of business!
After the first in-person visit, you can do telephone or Skype visits with him. You do these monthly. YOu will only have to go in person about twice per year.
This is a good doctor. If you would like his name, let me know. He is treating a number of folks from Texas and they are all very happy with him.
If you show him your positive Igenex test, you should be able to get treatment at the first appointment.
Texas is very tough on lyme doctors. That is why they go out of business there. Come to the east coast where lyme is worse than an epidemic, and you should not have a problem with the doc closing up shop.
Believe me, you are supposed to get better. Texas is the problem. They threaten lyme practitioners so that they leave Texas or stop treating. Then, sometimes, the person starts treating again and gets threatened again and stops again.
I am so glad you found this forum. We will help you. I believe that if you come east to a good doctor you will regain your health.
I hope you can make this happen. Let me know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, I read one of your posts in which you said that eating various foods often makes you sick--feeling spacy and out of it.
This shouts a problem called Mast Cell Activation Disorder. The lyme doctor I recommend is very familiar with this disorder. He is finding more and more lyme patients with it. He knows how to treat it with a combination of over the counter medications.
I have corresponded with lyme patients who have described these symptoms. They have very few foods they can eat without getting sick. They are getting relief by being treated for MCAD.
Do a search on LYmeNet and on the Internet and you can read about it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you. I have messaged you to find out the doctors name you speak of. i am very interested in seeing him!
Posts: 53 | From Texas | Registered: Apr 2015
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posted
I just broke up your post - if you could type 1-3 lines at a line, that's easier for many people to read here.
You have had an unfortunate experience with that doctor. I'd say most Lyme doctors are able to see their scheduled patients, so I wish you all the best in getting in to see the next recommended one.
My CD count is 140 and I have Lyme. I spoke with the originator of the test and he said a low score indicates Lyme but a higher score below 200 does not rule it out, just like someone could have a higher CD4 count and still have AIDS.
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
wow, what terrible luck with those two drs!!! it would be easy for me to be quite discouraged from that.
hang in there and keep searching. I have hope someone will come along for you (and me!).
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Don't lose hope. TF's doc is a good one.
Uses the same protocol my doc uses.
Travelling with lyme is tough. I am so so glad you have a supportive family.
You will get through this. Keep on trying.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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