I'm new here, and I've never, ever posted anything online, but I need help and you all seem like great people to ask.
Long story short, on 8/7/14, I suddenly felt like I was going to pass out. Three days later, I was lying in a hospital bed so weak that I could barely lift my arms and was unable to eat.
6 months later, and I constantly feel like I'm having a heart attack (extreme chest, back, neck pain) and am almost bedridden. Nerve pain, muscle spasms, tachycardia, constricted breathing, rising blood pressure, extreme weakness, painful cracking joints, weight loss, blurry vision, head pressure, all this is unbearable.
Does Lyme progress so suddenly and quickly?
I had finished Cipro for prostatitis a month before all this started, so I'm worried this might be fluoroquinolone toxicity.
But I seem to have 7-day cycles? Never had fever?
I do have some positive IgM Igenex bands:
**31 +++ **39 IND **41 ++ 58 ++ 66 + **83-93 +
I have IgG antibodies to West Nile, parvo, EBV, and CMV, so I'm worried the Igenex result could be a false positive due to viral interactions.
Thank you so much for your help.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to Lymenet!
You can get a band 31 test from Igenex to determine whether it's cross-reactivity or not. What were your IgG Western Blot results?
Lyme is different for each person, some it might come on slowly, others quickly.
Let's say it is Lyme. You will need to address more than infection. It's not like strep throat where you just take a drug and it's gone. You'll have to address inflammation whether it's Lyme or not. Food allergies/intoleranced and diet whether it's Lyme or not.
You'll need to look at a comprehensive program to restore health. Lyme might be a piece of the puzzle.
Post your IgG results.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
I asked my doc to do the band 31 test, so I hope he'll do it.
Is either IgM or IgG better than the other for Lyme diagnosis?
I'm 28 and applying for disability. :/ This is all nuts.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Is this a doctor with lyme experience? Most doctors do not know how to diagnose or treat lyme, so you have to see a specialist. Unless this is one of those rare non-specialists who is willing to learn, consult.
This could be an early case that got bad fast, or a late case that suddenly exploded. Both of these scenarios do happen.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Read the following post that explains the Western Blot:
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM"
So, as you can see, your Western Blot is very positive for lyme disease.
You should read and STUDY the Burrascano Lyme Treatment Guidelines found here:
This document is also at the top of Medical Questions.
When I had lyme disease, I also had babesiosis and bartonella. Read about these coinfections in the Guidelines. Nearly every lyme patient has these 2 additional diseases.
The babesiosis gave me a very distinct 7-day cycle of illness. My lyme doctor said that babesiosis has a 7-day and a 14-day cycle. So, it sounds like this may be what you are experiencing.
Lyme has a 4 week cycle.
My advice to you is to get to the very best lyme doctor you can afford. Find one who follows the Burrascano Guidelines. This is how I got well and so did at least 5 of my friends.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (babesiosis, bartonella, ehrlichia, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
Burrascano was the premiere lyme disease pioneer and the most successful lyme doctor in the world. They came from all over the globe to be treated by him. He is now retired.
This document is not an easy read because it was written to doctors to teach them how to treat lyme disease. But, it will give you your education on the horrendous disease that you likely have.
The doc is the key to getting rid of this horrendous disease. I can't emphasize that enough.
See Support Groups on the left side of the page. Talk to as many as you can to find out about who is getting people well.
You can also post in Seeking a Doctor and get help there. Be willing to travel. Good lyme doctors are few and far between.
This can all turn around if you go on appropriate high-dose combination of antibiotic therapy.
We will help you here all we can. Welcome to LymeNet!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
It sounds like you have lyme and co infections to me. It's never just lyme. Most people get at least the three b's: babesia, bartonella and bb (lyme).
Wondering who led you to IgeneX for testing as most allopathic docs don't want to do this test. Do you have a lyme literate MD? It is very important for you to find a real lyme literate MD (LLMD). Most doc's think they are, but they are not, especially not the ID docs (waste of time). Go to SEEKING A DR and post a request.
A real LLMD knows that the correct diagnosis of lyme is a clinical one.
Here is a good book to read about lyme: Cure Unknown, Weintraub. Also, Healing Lyme (Buhner).
All the best, and welcome to Lymenet!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Thank you all very much for the replies, I'm almost in tears thinking that I may have found the answer!
I am actually very fortunate to have both a PCP who is very open, and a LLMD. My PCP originally ordered the Igenex test for me. I just wish my LLMD knew more about the problem with fluoroquinolones. I've already been able to convince my PCP that fluoroquinolones can be very harmful!
My LLMD seems certain that this is Lyme, but I've only seen him twice. I think he's a good one. He actually had dinner with Burrascano like last month.
TF, so glad to hear from someone who can relate to the 7-day cycles! It has been really bothering me that my cycles seem less than 28 days.
It's hard to know what to do being stuck in the middle here. If fluoroquinolone toxicity, you avoid antibiotics. If Lyme, you take lots of antibiotics. So, even though it sounds crazy, I really hope this is Lyme!
I also have the MTHFR mutation, so those genes are working at about 30% of what they should be, which I understand will make everything worse.
All my co-infections came back negative, but I understand that I probably still have one or more of them, especially with this difficulty breathing and chest pain. Just wish they would have come back positive.
I'll definitely check out Dr. B's guidelines and the books. Thanks for those!
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
posted
I'm actually close to the Louisiana border, so I was able to find one there that's a couple of hours away from me thankfully!
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
There are other antibiotics besides fluoroquinolines. Only bartonella usually has the quinolones in the protocol.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Awesome, good to know. I'm on Cefzil and Bactrim right now, and my doc wants to add another one soon but I'm not sure what. I wanted some input from you all before continuing on this route.
I was on doxycycline for the prostatitis for a week in January, and that made all my other symptoms worse and made my heart skip beats really bad. I had to stop because of what my heart was doing. So I guess maybe a herx? Except that it never went away even after stopping the doxy.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
posted
It could have been a herx. Doxy was my first med and I herxed horribly on it. My cardiac symptoms got scary when I was herxing.
After the first few months of treatment, my palps became more and more infrequent. The chest pain went with it.
It sounds like you are in good hands, and props to you for learning all you can to make sure you are getting the right treatments.
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme doc put me on Bactrim DS (double strength). When he did is when the distinct 7-day cycle started.
Bactrim treats babesiosis and bartonella. Why not read the sections in Burrascano that give the symptoms for these 2 diseases. See pages 26-27.
After a month, the doc added artimesinin (an herb). That stopped the 7-day horrible cycle like a miracle! Burrascano says to add this on page 24.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
My 7-day cycles started from the very beginning, months before I ever had an antibiotic. I always thought that it was strange to cycle like that, then I read about Lyme cycles.
I'll definitely read Burrascano and about the herb. Sounds like something I might need!
gz, thanks for sharing about the doxy. My cardiac symptoms were so scary too, but I guess I'll have to stick it out if my doc wants me back on it. My heart would skip every 2nd or 3rd beat for several minutes straight. Very, very scary.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Glad you found an LLMD. Did you have tests for co-infections? Mine came on very suddenly. I have read that when you are co-infected with babesia - which I am - it can come on very suddenly, whereas "just" Lyme comes on more gradually.
Also, there are herbal protocols that can be used for Lyme. You could ask about starting with those, seeing how you do, then adding in abx at a later point if you can tolerate them.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by SickSam: IgG was Igenex indeterminate.
**31 ++ **39 IND **41 ++ 58 +
I asked my doc to do the band 31 test, so I hope he'll do it.
Is either IgM or IgG better than the other for Lyme diagnosis?
I'm 28 and applying for disability. :/ This is all nuts.
With 31 on both, I'd want the cross-reactivity test. I hope he does it for you.
Lyme can be diagnosed by either, but if it's Lyme and you have + on band 31, according to my LLMD, that means you've had it over a year. With 2 pluses, it means you've had it a while. I had ++++ on IgG band 31 and I got better, so you can do this.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
WPinVA, all my coinfections came back negative, but maybe I still have some anyway. Mine did seem to come on suddenly, but I never had fever.
sixgoofykids, I checked with Igenex yesterday and my doc did send the request to do the band 31 test. They said it'll be 2 weeks before it comes back. Glad to hear you got better! Thanks for the encouragement, it helps a lot.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Oh good! Keep us posted on the results!
Be sure to look at all aspects of health to get better. You need good food, sunshine, exercise, and sleep. Along with good detox (sounds like your doc is helping with that). It's not just killing bugs, it's rebuilding health.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I will certainly keep you all posted. I'm very thankful to be able to talk with people who understand!
I wish I could exercise. Before this hit me on 8/7 last year, I was working out 4 times a week. Since then I've hardly been able to walk. Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You might just have to redifne what exercise is to you. By "exercise", I don't mean beyond your abilities. Think in terms of movement.
lilght rebounding (feet don't need to leave the rebounder) walking stretching weights light Pilates yoga
Dr. B in his guidelines says you will not get better without exercise. I couldn't walk without assistance, but my husband came home from work 3 times per week to help me to the gym so I could lift light weights. I was pretty pathetic and spent the rest of the day in bed, but I was committed to moving every day.
Dr B also recommends NO CARDIO until you have good stamina.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
I live in Houston, but I am from Louisiana. Will you private message me and let me know what doctor you are seeing? I am looking for a doctor right now.
Thank you.
Posts: 26 | From Houston | Registered: Mar 2015
| IP: Logged |
posted
Hey six goofy kids! Can you explain that thing about having a + on the 31 band meaning you've had it a year? Is that in reference to igm or igg or both? I'm interested in this.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic