Losing hope

[skyfall]

Hi all,

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.

 

[Gingergrrl]

@skyfall Even though my history is different than yours, I relate to the feelings of frustration in your post and trying so hard to find the answer but constantly going in circles or having roadblocks thrown in your face. I don't know how to solve it but wanted to acknowledge how hard you are trying and not to give up hope.

I am so sorry for the loss of your miscarriage and everything you have gone through since 2013 (that is the year my illness really began as well- in Jan 2013.) There are many people on PR who are very knowledgeable re: Lyme disease (not me) but they may have some ideas of other doctors that you can see if you share your location.

Sending hugs

 

[skyfall]

Thank you. I am in Texas but i am willing to travel out of state now. I want to find someone who is highly knowledgeable in lyme and knows how to use supplements, diet, etc to make the whole body heal, and tests for every possible piece to the puzzle

 

[Firefly_]

Heya skyfall, my sympathies...you've had a rough go of it! I'm in Oklahoma and it is hard to find a Dr in our area that has any sort of a clue! I too have had many miscarriages that were eventually put down to low progesterone (theory and supposition, not fact). Probably have to travel to a more metropolitan area to get the Dr you need.

 

[Jonathan Edwards]

@skyfall
The problem with Lyme testing is that it is unreliable, and it is said that Igenix testing is particularly out of line with other labs. I do not think that a positive test from Igenix means you have chronic Lyme infection. If you see a Lyme specialist the trouble is that they are likely to treat you for Lyme disease because that is how they make their money. I would personally suggest going to an ordinary physician. You may have some other problem, such as ME. I doubt that supplements are going to be of any help to you. We have no good evidence that they are useful for this sort of illness.

 

[Wayne]

I just want to find a good doctor to help me.

Hi @skyfall

Sorry to hear how difficult things have been for you. I also have a Lyme diagnosis, and have mostly been going it alone without a doctor--for various reasons, including being mostly cost prohibitive. But I do continue to research and see what I can do for myself.

I'll leave a link to one of my recent posts, which has a link to a book that I think is excellent. Perhaps you'll consider checking it out, and seeing what you might be able to do for yourself while you wait for an opportunity to see an LLMD you're comfortable with.

http://forums.phoenixrising.me/index.php?threads/researchers’-discovery-may-explain-difficulty-in-treating-lyme-disease-new-treatments-discussed.37826/page-5#post-602943

All the Best, Wayne

 

[msf]

My advice would be to find someone whose advice you trust when it comes to Lyme. I doubt you will find that person on this forum. It requires you to research the subject yourself, and then make a decision about whose position makes the most sense to you.

 

[Effi]

hi @skyfall
I'm afraid I can't really give you any pointers about Lyme specifically (I'm sure someone else on here will!) but I can absolutely relate to feeling overwhelmed by the whole situation. There's a lot of opinions about this illness, a lot of roads you can follow, but in the end nobody seems to really know what's going on. The cheapest option would probably be to find a regular doctor nearby who you can trust and is 100% on your side, and who is willing to assist you in your search. Try to think symptom relief more than cure to begin with, cause it's complicated. I don't know if you are able to read and research online, but I personally have learned a lot on PR and other forums about all the different possibilities we have. If you have any questions there's always people who can give you some answers. Good luck!

 

[msf]

As for the practical issue of finding a doctor, both ILADS and IDSA have lists of LLMDs, I believe. It´s up to you to make the decision about which list you trust.

 

[justy]

Hi Skyfall, so sorry about the loss of your baby and your ill health. Unfortunately miscarriages are common in women with Lyme.

As you have only been sick since 2013, your chances of recovery, if you get correct treatment are high. If I lived in the States, even though it might be a long way I would personally go and See Dr Jemsek in DC - he seems to be getting a lot of people well or vastly improved over in my FB Lyme group. His approach is very medical and he likes to hit the Lyme hard with antibiotics etc - he also looks a lovely man and is very dedicated to his patients. He has a number of talks available on You Tube.

Good luck - and don't lose hope! Ive been seriously ill for 7 years, and sick on and off for 14 years before that and I still don't give up hope....we have to keep on and we WILL get there eventually!

 

[rebar]

I'm sorry for your loss.
If you don't presently do a medical, symptom, food etc. journal, start one.
You may or may not get help from a doctor-patient relationship.
I know you can improve your symptom load and out look by journaling and linking.
As much as possible feed the positive, look and incorporate the potentially helpful
and then evaluate.
I'm far from well but have improved after 4 years of serious decline, started about 10 months ago
with observing and linking. I have been able to recognize symptom patterns and possible reasons.

 

[Dufresne]

I think the positive from Igenex coupled with your reaction to ceftin suggests further inquiry into borreliosis would be wise. You might want to find an LLMD or doctor who understands something about ME/CFS, chronic Lyme, and fibromyalgia. An LLMD may decide to try you on other antibiotics known to hit borrelia. If you were to have a similar reaction to doxycycline, metronidazole, etc, that could further support a Lyme diagnosis.

 

[Wayne]

Most, if not all LLMDs prescribe antibiotics. There are many success stories using antibiotics, and many other stories describing some very problematic results. One of the things I believe can strongly tip the odds in your favor if you go the antibiotic route is to supplement with probiotics, at least twice a day, on each side of the antibiotic administration. If you would be interested in learning more about protection using probiotic supplementation, Dr. David Perlmutter's website would be a good place to start.

Best, Wayne

 

[drob31]

I think @Ema would have good feedback on this.

 

[minkeygirl]

Look into Gordon integrative in northern California.

http://www.ericgordonmd.com/

 

[Ema]

Thank you. I am in Texas but i am willing to travel out of state now. I want to find someone who is highly knowledgeable in lyme and knows how to use supplements, diet, etc to make the whole body heal, and tests for every possible piece to the puzzle

Hi skyfall, welcome to PR!

I have a couple of thoughts...if you've had a positive test from IgeneX, then it's very important to follow up with a knowledgeable ILADS physician so you can get appropriate treatment. IgeneX is not an unreliable lab; it's considered the gold standard by the doctors that treat Lyme patients every day. And while it's true that lab testing often misses cases of Lyme, it's much more rare to get a false positive. That said, exposure to Lyme doesn't mean that Lyme is for sure causing your symptoms, but you should definitely see someone who will take Lyme seriously. And unfortunately that rules out most "ordinary" doctors or those that follow the IDSA line.

So, if you're willing to travel, I'd look at a doctor in SoCal called Dr Chitra Bhakta. Her website appears to be down at the moment but she treats it all. A friend of mine saw her and made great improvements.

As @minkeygirl suggested, Gordon Medical is also an idea but they are also very expensive. Dr Jemsek is also excellent but far from you.

Dr Jill Carnahan in Colorado may be an option.

http://www.jillcarnahan.com/

Finally, Dr William Rea is the father of environmental medicine. I'm not sure if he treats Lyme directly or not but you might call and find out because he is in TX.

http://www.ehcd.com/

You've had some crappy luck, that's for sure, but don't give up hope yet! Finding a good doctor is often one of the hardest parts of the battle...

Wishing you the best!

 

[minkeygirl]

@Ema. I looked at going to dr Bahktra since she is close and Rich Vank knew her but reviews Werent that good. Maybe she's better with lymes

This is what I got trying to go to her site

 

[Ema]

@Ema. I looked at going to dr Bahktra since she is close and Rich Vank knew her but reviews Werent that good. Maybe she's better with lymes

Some people don't like her because her treatment protocol is very strict and can be hard to follow with dietary changes and IV meds etc. I think that has skewed her reviews somewhat. But for Lyme, I think she is a good choice because her treatment plan is so comprehensive. She's one of the only ones I know that treats both Lyme and hormones.

 

[Wayne]

Thank you. I am in Texas but i am willing to travel out of state now. I want to find someone who is highly knowledgeable in lyme and knows how to use supplements, diet, etc to make the whole body heal, and tests for every possible piece to the puzzle

Hi @skyfall,

I've read a book on Lyme written by Dr. David Jernigan. I seem to recall he himself recovered from Lyme, and started his own health center in Kansas, which would sort of be in your neighborhood. IIRC, he shies away from antibiotics, and away from any therapy that causes undue "herx" reactions. He focuses more on bringing the body into balance so that it can do what it necessary to become well again.

Dr. David Jernigan, Hansa Center

 

[Daffodil]

can you get to reno to see demeirleir? after the initial visit, which is sort of expensive, you can do phone consults. if you have insurance, some of the testing might be covered.