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Posted 6/30/2018 9:39 AM (GMT -5)
All:

I was bitten about a month ago by a blacklegged deer tick, I found him, just not fast enough. Symptoms showed gradually, no crazy fever, just a couple headaches and some off balance/fog. Within a week I had the standard doxy regimen, which seemed to work initially. After several return visits, the doc also prescribed the CDC standard for Babesiosis of mepron/zithromax and full standard tick borne blood tests.

PCR and AB Panel w/reflex all came back 'normal' or 'negative'. Of course my balance/neurological symptoms are still there. Insomnia showed up about a week ago. To date I have shown none of the classic lyme symptoms, fevers are always low grade.

After getting past what I should have known and done to prevent this, my research led me here. I know my life is changed for good and I feel like I see the truck coming and I have to let it hit me.

Once I found the ILADS site, my symptoms match almost exactly the Bartonella-BLO write up in Dr. Burrascano's treatment guidelines paper. It was like he was writing about me. Unfortunately his approach is by no means standard or even seemingly recognized by traditional medicine.

My family doc has been more than helpful, but he is not knowledgeable on tick-borne and I am referred to an 'Infectious Disease' MD. Now that I see widely divergent schools of thought on treatment I am not thinking he will do much.

I need some perspective on what that means from people here that have much more experience than I do. I am still functioning, just have to be deliberate.

- Can someone explain to me what those test panels really are? Is a 'western blot' different that those?

- How quickly will my lifestyle simply go away? I like to work on cars in the garage and home DIY projects. Spend time out with wife and kids. Exercise.

-Do I have days, weeks, or months to try and tie up some loose ends before the symptoms will take over completely?

- Advice on logical next steps I should do at this stage based on real experience?

Apologies for the long post, as many of you have been here before I ask for your understanding and thoughts.

Thanks.

Phil
Posted 6/30/2018 10:17 AM (GMT -5)
"I know my life is changed for good and I feel like I see the truck coming and I have to let it hit me."

- That's a great analogy, and it certainly feels that way. You're not really letting it hit you, though. You're researching, asking all the right questions, and are doing something about it.
Posted 6/30/2018 10:27 AM (GMT -5)
hey, you're getting on this early which is great! any chance you can see an llmd? that would be ideal, if you find a good one they can help provide and guide you through treatments. If your symptoms persist after standard course of treatment I think you need to keep finding ways to treat because the guidelines are ludicrously inadequate.

In the meanwhile I'd consider adding in an herbal protocol (recommend looking into Buhner, Cowden, Zhang, and Rawls). I think Buhner is the most affordable program. At the very least this strategy should hold off pathogen progression and help reduce symptoms over time.

I'd try and keep living your lifestyle so long as symptoms permit. This stuff doesn't have to be a death sentence, plus given that you caught this early you have a great opportunity to head it off.
Posted 6/30/2018 10:31 AM (GMT -5)
You are early in the infection, you should fully recover with the correct treatment.

Find a LLMD in your area by asking here or using lymedisease.org. The tests are not 100% accurate, your symptoms and history are better evidence of infection. The Western Blot can be helpful if the complete results are given, you might have one or more Lyme-specific bands that are positive, but not enough to meet the CDC's arbitrary cutoff for a "postive" result.
Posted 6/30/2018 10:33 AM (GMT -5)
How dysfunctional/disabled you get and how quickly and to what extent symptoms continue to come varies greatly from person to person for a multitude of reasons that are not all understood.

Some things you can do right away to help yourself:

1) Reduce the amount of toxins you are exposed to.

- eat organic, grassfed, non-GMO as much as you can afford and eliminate or reduce gluten, sugar, dairy, highly proccessed foods, and any foods you have allergies or sensitivities to

- get chemicals and fragrance off your body, out of your house and car; use natural cleaners and fragrance free products

- use water filters for drinking water and the shower head

2) Reduce stress

- While you're researching, try not to freak out. Take time every day to detox your mind from the fear, confusion, and feelings of being overwhelmed that are inevitable with Lyme.

3) Start a new post "Looking for LLMD near (your area)".

- You're still early in the game. If you get proper treatment quickly for all the infections, you should fare much better.

- LLMD is a Lyme literate medical doctor.

4) Recommeded reading:

Stephen Buhner's Healing Lyme 2nd edition and the 2 other books on coinfections.

Dr William Rawls, Unlocking Lyme

Others will provide more info. Come back here often. You can subscribe to this post and any other post when you're logged in to get an email notifying you when someone has posted a new reply.
Posted 6/30/2018 11:45 AM (GMT -5)

SPM said...
All:

I was bitten about a month ago by a blacklegged deer tick, I found him, just not fast enough. Symptoms showed gradually, no crazy fever, just a couple headaches and some off balance/fog. Within a week I had the standard doxy regimen, which seemed to work initially. After several return visits, the doc also prescribed the CDC standard for Babesiosis of mepron/zithromax and full standard tick borne blood tests.

PCR and AB Panel w/reflex all came back 'normal' or 'negative'. Of course my balance/neurological symptoms are still there. Insomnia showed up about a week ago. To date I have shown none of the classic lyme symptoms, fevers are always low grade.

After getting past what I should have known and done to prevent this, my research led me here. I know my life is changed for good and I feel like I see the truck coming and I have to let it hit me.

Once I found the ILADS site, my symptoms match almost exactly the Bartonella-BLO write up in Dr. Burrascano's treatment guidelines paper. It was like he was writing about me. Unfortunately his approach is by no means standard or even seemingly recognized by traditional medicine.

My family doc has been more than helpful, but he is not knowledgeable on tick-borne and I am referred to an 'Infectious Disease' MD. Now that I see widely divergent schools of thought on treatment I am not thinking he will do much.

I need some perspective on what that means from people here that have much more experience than I do. I am still functioning, just have to be deliberate.

- Can someone explain to me what those test panels really are? Is a 'western blot' different that those?

- How quickly will my lifestyle simply go away? I like to work on cars in the garage and home DIY projects. Spend time out with wife and kids. Exercise.

-Do I have days, weeks, or months to try and tie up some loose ends before the symptoms will take over completely?

- Advice on logical next steps I should do at this stage based on real experience?

Apologies for the long post, as many of you have been here before I ask for your understanding and thoughts.

Thanks.

Phil

Hi Phil, welcome to our community!


"I know my life is changed for good and I feel like I see the truck coming and I have to let it hit me."

You have caught this early...and you have a very good chance to irradicate this infection....your life may be changed temporarily while you focus on your treatment/healing...but it won't necessarily change for good.
My advice is to find a LLMD a.s.a.p. and schedule an appointment...and get proper treatment.

In addition to contacting ILADS for a Physician referral, you can also start a new thread on here: "Looking for LLMD in/near _________" and fill in the blank with your location.

Also, you can contact me...I may have some LLMD's listed in your area.
Posted 6/30/2018 1:44 PM (GMT -5)
Thank you all for the replies, I really appreciate it. I now have a list of homework and will get on it!

I did not ask before, but am sure many of you have spouses and kids - do I need to segregate my food,utensils, etc? I read a few posts here about transmission of Bartonella via saliva/bodily fluids. I am deathly afraid I might have infected my wife.

I live just west of STL, MO. I'll post and message as suggested. Via web search I did find what appears to be an LLMD maybe 110 miles from me. Will call them Monday first thing, hoping they have something available in the short term. I am going to assume none of these types of docs and medications will be covered by my employers health plan?

Thanks again, I will try to be an active contributor to the forum as well.

Phil
Posted 6/30/2018 2:06 PM (GMT -5)

SPM said...
Thank you all for the replies, I really appreciate it. I now have a list of homework and will get on it!

I did not ask before, but am sure many of you have spouses and kids - do I need to segregate my food,utensils, etc? I read a few posts here about transmission of Bartonella via saliva/bodily fluids. I am deathly afraid I might have infected my wife.



Phil

Well we’ve had debates on here before. I think it’s highly likely/probable that it is sexually transmitted but I’m not convinced it’s passed on through casual contact ie a sneeze, a kiss on the cheek ..etc
But I wouldn’t give sloppy kisses on the mouth to my children and spouse and would use barrier protection for sexual “activity”
Posted 6/30/2018 2:23 PM (GMT -5)
it replicates slow ....welcome... congratuladolences
Posted 6/30/2018 3:00 PM (GMT -5)
SPM: regarding the sexual transmission of Lyme, no one really knows. There are anecdotal cases of one spouse getting Lyme years after their partner did, and some people have postulated that it may be because it can be transmitted sexually. Other people have had the disease for a decade without their spouse getting it, as well as having perfectly healthy kids. It seems as though it may be possible in some cases, and maybe not in others. But in the end, at least until you're better it's probably best to use protection just in case.
Posted 1/14/2019 2:01 PM (GMT -5)
It has been around six months since my initial post and I wanted to update the thread to say thank you. The responses to my post and wealth of information on this site helped me to focus, stop feeling sorry for myself, and get on with it.

After working with an excellent LLMD in my area, I found out that I probably had the infection brewing for at least 2 years before the tick I found on me. It probably was just the last straw for my immune system. The diagnosis was borrelia and babesia. The treatment focused on them has helped me quite a bit. I have been rotating abx, herbals, and time off. Rebuilding the immune system is also a priority. It's going to take awhile to undo all the abuse I heaped on my body for 40+ years.

Finally if I can summarize what might help others is that these conditions demand significant,permanent changes in lifestyle and evaluation of priorities as it relates to family and career. None of that was easy and certainly stretched the limits of many relationships. The acceptance that you will never 'be the same again' is important - but along with that comes new possibilities. I was able to find the sides and bottom of that dark pool. I am a better and more productive person from doing these things and that surprised the hell out of me.
Posted 1/14/2019 3:09 PM (GMT -5)

SPM said...




Finally if I can summarize what might help others is that these conditions demand significant,permanent changes in lifestyle and evaluation of priorities as it relates to family and career. None of that was easy and certainly stretched the limits of many relationships. The acceptance that you will never 'be the same again' is important - but along with that comes new possibilities. I was able to find the sides and bottom of that dark pool. I am a better and more productive person from doing these things and that surprised the hell out of me.

Not necessarily. I know people who are in remission and have resumed their careers/active life styles with no glitches.
Certainly we are all unique and have varying challenges with this disease...and what remission looks like.
Posted 1/14/2019 3:24 PM (GMT -5)
Congratulations on your recovery.....and thank you for coming back to post this.!!
Posted 1/15/2019 8:39 AM (GMT -5)
It sounds like you've made a lot of progress, congrats!!!

I think the level of recovery depends, but I think we can regain very high capacities again especially with lifestyle adjustments. But I won't be pushing myself beyond certain limits, like doing triathlons or anything like that. Otherwise I think I can get after things in a good and healthy way.

It's great when we can find the silver-linings of these experiences, sometimes things like this open new doors and help us grow/evolve.
Posted 1/15/2019 1:44 PM (GMT -5)

jjmartin said...
" I have been rotating abx, herbals, and time off. Rebuilding the immune system is also a priority." -SPM

Wow taking ABX and rebuilding the immune system at the same time , that is quite a trick.

https://www.sciencealert.com/side-effects-from-antibiotics-include-immune-system-damage-and-fewer-brain-cells-study-shows

"Antibiotics Found to Cause Immune System Damage And Reduce Brain Cell Growth"

https://www.the-scientist.com/daily-news/widely-used-antibiotics-affect-mitochondria-35794

"Widely Used Antibiotics Affect Mitochondria"

This is one of the reasons Dr. J. does the pulsed approach. It allows for the immune system to 'kick in' on the drug holidays. (when the abx aren't doing the 'work')
Posted 1/15/2019 4:59 PM (GMT -5)
Thanks for replies, I am by no means recovered fully, but on the same path as many here. I certainly agree that others achieve remission and resume where they left off, but I suspect they made changes to come out on the other side. It is different for everyone I know, did not want to imply otherwise.

I should clarify that lifestyle changes for me meant massive overhaul of diet, health care perception, and life priorities. I was able to keep career and activity going but the approach and goals are different. More a state of mind I suppose. Feels like common sense to me now, but I would not have made them a year ago.
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