So confused and need to vent

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Loveher30
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/29/2018 6:29 PM (GMT -6)   
Hello all, this is my first post here. I would first like to say I've been creeping on this forum for a couple of months now, and since learning more and more about lyme I just wanted to wish everyone the best in their recovery efforts, I truly do. I do not have lyme, but unfortunately we believe my wife does. She sparingly goes on to this forum even though I tell her I feel there is a lot of useful information on here from people who only care about getting better, and not about what your insurance is, and I am not sure if she would be upset or not about me posting her story here so I will be a bit vague.

My wife and I recently got married and bought a new house with high hopes of starting an amazing life together. We are both in our late 20s and both active, especially her, running numerous marathons and beating me constantly in workouts, and live in the NY/NJ area.
Shortly after the honeymoon, the wife had terrible stomach issues, nausea loss of appetite, etc. After over a month like this and multiple dr visits, she developed other symptoms like palpitations, chills, on and off low grade fever around 99.7, back pain, and being dubbed some knee who simply has terrible health anxiety, we finally met with a new primary Dr who asked if she had ever been bitten by a tick. She never saw any indication of such, however since moving we have found a tick or two in our dog, and I've actually had 2 ticks crawling on me, thankfully not biting. He suggested a test for lyme, and within a week we had a "borderline positive" result for lyme, and a month of doxycycline.
On our own we looked up a few LLMDs in the area. After seeing one who seemed to not care about lyme and suggested it was a thyroid problem she has had for the past 15 years and didn't even want to do an Igenix test, we found another Dr who seemed highly recommended, and after talking with her for a few minutes said she has bartonella and candida. This Dr seemed knowledgeable and gave us hope.
Fast forward to a month or so after the initial diagnosis, my wife felt no better. We received the results of the Igenix testing with another "borderline positive" result for lyme and no co infection. I happened to be visiting the Dr who initially tested for lyme for a checkup for myself. He asked how my wife was doing, and when I told him about the LLMD we were seeing, he stated that the guy was a whack job and soon we would be on a Picc line in no time. He recommended an infectious disease Dr, who stated that if it was lyme it would be cured by now, and when he looked at the Igenix test he said nothing indicating lyme. He also said he had no idea what was wrong and referred us to a rheumatologist which we have not seen yet.
My wife is also in the medical field, and was having doubts it was lyme, and still is. I her maddening researching of the internet, which is an amazing and terrible tool at the same time, she found mast cell activation disorder and hystaming issues. She believed that many of these issues fit her better than lyme or Bart, and thankfully there was a Dr that dealt with this mast cell issue close by and took insurance. After a visit with the allergist, she said the mast disorder is rare, but rested her for different allergies, more blood work, and told her to change her diet a bit to a less inflammatory one, yet this was difficult because it was opposite of the diet to help her with the candida. She also said to stop the Diflucan and lyme probably isnt the issue.
So here we are today, about 2 or 3 months into our post somewhat lyme diagnosis. Blood work has shown my wife has that MTHFR mutation, which sucks. She takes daily Epsom baths to detox, as well as Alka seltzer gold, and something containing gluthiaon that that LLMD prescribed. Her symptoms have not gotten any better, her anxiety has only gotten worse. And to top it off, a urinalysis test just came back today from the allergist stating her hystamine levels were high. She wants my wife to redo it because she thinks the doxycycline may have affected the test, however my wife stopped taking the meds for a week when she felt hystamines may have been an issue. So now we possibly have that to add on top of it.

I'm not really sure why I am posting on this forum. Maybe it helps just to tell our story a bit. Maybe I'm hoping for someone here to have a magical answer that we haven't thought of. All I know is that I love my so much that I will do literally anything for her. Currently she is back in the doxycycline and Diflucan, taking some herbs, not many, and is having a real problem detoxing. We made an appointment and have everything planned to go to infusio in California in a few months, taking out loans etc because it is worth the price if it will make her better. Thankfully my job allows me to work a lot of overtime to pay it back, but this leaves her alone and thinking of nothing but being sick, and me exhausted lol. I think one of her biggest issues with dealing with this disease is that fact we keep getting so many conflicting opinions, and feel so lost. Is there anything else we can do, or any opinions from the people who seem to know this disease extremely well, on if we are doing the right things? I have read the opening post on new to lyme and it is very helpful. All I want is for the woman I fell in love with to get better so we can seat living the next chapter of our life together.

God bless everyone else suffering from this or anything similar. Here is to hoping you all feel better, thanks for letting me vent, and sorry for the long rambling hahah

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 320
   Posted 3/29/2018 6:41 PM (GMT -6)   
Your wife is lucky she has someone like you who is supporting her.
Lyme is complex and confusing and there is a learning process for everyone of us and for the people who love us.
I'm still looking for the formula myself that puts it all together. If only it could be that simple.

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 3/29/2018 7:13 PM (GMT -6)   
I would also get some tests from Medical Diagnostic Labs in NJ, they do pretty good with all these pathogens in test. in some cases better than Igenex

you may get additional clarity that could lead to a path forward.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 336
   Posted 3/29/2018 7:57 PM (GMT -6)   
Not surprising 28 days of Doxycycline didn’t do much. Doxycycline wasn’t that great for me either. Ceftin, Minocycline, Flagyl, and Clindamycin did way better for me (not all taken at the same time fyi). For me Doxycycline and Zithromax are at the bottom of my list of effective antimicrobials.

I totally understand the skepticism. I also have borderine testing. I am very skeptical and scientific by nature, so it is also hard for me to accept things when half the stuff I read says we have no tick borne infections in Missouri, we don’t have the right kind of ticks, the tick wasnt attached for 72 hours... etc etc.. ALL BS as I have now accepted.

The main confirmation I have is how my symptoms go away when on an effective antimicrobial or two. Then my symptoms have crept back about a 7-10 days after taking a break from antibiotics. I just recently started my third break from antibiotics since starting treatment 8 months ago. Hopefully I can stay off.

Its difficult to figure out what to do when one doctor thinks they can help you and another doctor says they are a quack.

Many of us go through this. You have to research research research. Learn and read everything you can then trust your instincts. Feel free to ask any other questions. There are lots of people here who can help you.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2112
   Posted 3/30/2018 5:44 AM (GMT -6)   
Hi and welcome to our forum,
Thanks for already checking out the new to Lyme thread.

Just some info: Lymedisease.org recently had a article on Lyme and mast Cell activation, you both may want to read it.

ilads.org has good info also about treatment guidelines.

Infectious MD is wrong , Lyme and co infections do not always treat or go away easily.

All of us here on the forum and others all over the world that are suffering and still treating are evidence of that.

Feel free to ask questions or just reach out for support here when you or your wife need it.

Take care and I wish your wife the best of healing and I also offer you some hope...with the right treatment path for your wife she can get better, it just can take some time.

Jo

10LymeB
Veteran Member


Date Joined Feb 2017
Total Posts : 675
   Posted 3/30/2018 12:43 PM (GMT -6)   
Sounds like lyme to me. Most lyme patients have mast cell activation, histamine reactions, etc. Borderline positive is still positive. Correct me if I'm wrong. Even a little lyme can cause big problems in some people. Be aware lyme is a LONG and very stressful journey. It's not gonna go away in a few weeks.

For the anxiety, try CBD oil or even something like lemon balm or passionflower tea. Anxiety seems to go hand in hand with nervous systems going haywire.
*42 yo - Treatment started Nov. 2016 - Bitten by mosquito in Paris 2013
* SIBO (improved with diet)
* Candida (improved with diet and Nystatin)
* Lyme - Babesia - Bartonella
* Hashimoto's (improved with NatureThroid)
* EBV
* HHV6
* Tinea Versicolor (improved with Sporanox)
* IBS (improved with diet and BPC 157)
* Mostly herbal treatment, Bryon White
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