seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm trying to decide how long to think Bb is the cause of my issues. I've continued to have a lot of muscle tightness/rigidity even when other symptoms like weakness have gotten a bit better 'periodically' on Abx (fatigue episodes are crushing and come out of nowhere for an hour or two some days).
Today, I was with my wife trying to walk through the department store. I've done a bit better than before on full-dose Biaxin walking through parks, outside Farmer's Markets, and stuff. I was with her walking through a large department store and all of a sudden it felt like my upper chest breathing muscles wouldn't expand enough to breathe right. My legs weren't weak, no tingling, numbness, lightheadedness. I just couldn't breathe fully and my energy was expended on an effort to catch my breath.
I had to walk across the entire store to go to the bathroom. By the time I got there I was exhausted. I was breaking out in bad sweats and shaky. I had to go sit in the car and wait for her and my daughter to finish shopping. I couldn't get the air conditioner on and felt like I couldn't passed out if I didn't get it to work eventually. I was very shaky for an hour or so. I got home and then 1.5 hrs later, back to OK.
Went over a relative's house for a BBQ today. Felt shaky with some breathing issues for a while and it got better. Ate dinner and all of a sudden I was so weak and shaky I had to lie down for 30 min. Entire evening ruined. I was doing FINE until eating. It's literally like my body can't muster the energy to digest the meal and it puts me in a tailspin.
These isolated incidents/freak symptoms are ridiculous to blame all on Lyme. I'm not convinced. I've been on Abx treatment since Aug-08 now in some form or another (albeit not high dose or combo therapy). I'm facing the fact this is my life and it ain't getting better. How many years am I going to pump Abx into my system and watch all the same crap cycle?
I can't work anymore, can't drive anymore. I'm only OK at times to play with my young daughter, cook an occasional meal, wash dishes, and laundry. I used to have a high-paced good paying career. I feel like I lost everything and disgusted. Next thing to lose is my house if I don't see light soon with this illness. Everyday, I tell myself maybe I'll get somewhere, I'm making improvement... I'm kidding myself. I don't have disability, not able to get SSDI. I'm not even close to normalcy.
I'm thinking it's time to start considering non-Lyme treatment based on my poor response to treatment. I feel there's a lot, lot, lot more going on w/me than just Lyme. I read so much here it's easy to blame this stealth infection on everything. Maybe it's time to stop believing this so much and think outside this box?
Losferwrds comment rings in my head on another thread about so many popping long-term Abx here and so few getting a quality of life back. Are these LLMDs doing us that much good in total across the entire forum? Some have great stories, but so very few don't relapse and many say Bb's in remission but blah blah blah came out or this or that. There's always something left. Where is normal? Who says life is like it used to be pre-Lyme? There are thousands of people here and I can count on a my hands and toes people here who can since I've been reading.
On a happy note at least I went out to a person's house and got to play squirt gun with my three-year old daugher. She gave me a Father's Day picture she created on a computer program. I wish I could be more of a Dad to her and take her places myself like before I got sick. It makes me want to scream.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
All of a sudden losing all your strength and all your energy is a common lyme symptom. It happened to me for years while I was undiagnosed. It could happen as soon as I ordered in a restaurant. Would have to cancel the order, be helped out of the restaurant, get taken home and crash.
Because of that common symptom, lymies can't make any plans, can't walk any distance, etc.
You said, "These isolated incidents/freak symptoms are ridiculous to blame all on Lyme." If you find some other disease to blame all the freak symptoms on, let us know what it is. As far as I know, lyme takes the cake for freak symptoms.
Why hearken back to how long you were on lousy lyme treatment. I was on lousy lyme treatment for 2 years. So what does that prove?
You said, "I'm thinking it's time to start considering non-Lyme treatment based on my poor response to treatment." You should have said, "Based on my poor response to lousy lyme treatment, I'm thinking it's time to try good lyme treatment."
It seems to me you have proof of babesiosis. Do you really need to question your lyme diagnosis? Do you think that you have babesiosis without lyme disease? You would be a first if this were so.
And, by the way, if you often get a flare of symptoms after eating, that can be a sign of Bartonella. This comes from my now famous lyme doctor.
One girl had this happen so often that she became afraid to eat. It set off all her neuro symptoms. She was losing 5 pounds or more per week out of fear of eating. When she switched to my doc, he said she had all the major bart symptoms and began aggressive bart treatment.
It is extremely common for a lyme patient to also have babs and bart.
Your best shot at getting your life back is Burrascano type treatment. Do you have that lined up yet?
By the way, all my friends that "popped long-term antibiotics" and got their lives back never posted on LymeNet. See, not everyone who has or had lyme disease hangs out here.
Just had to tell you a few things to combat your negative thinking tonight.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I was in the same boat as you for over a year and practically eliminated exactly what you're describing by:
1) eliminating all sugar and alcohol 2) finding a good llmd to treat bartonella and lyme and start me on Biaxin.
I'm the most negative person I know and I believe there is a way out of this after seeing some relief from this. I used to have to clutch the rails to get up stairs, it was ridiculous.
The people that get healthy don't stick around, most of us are sick and trying to better navigate this disaster by being here and learning.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The tightness in the chest MIGHT be helped with a Ventolin inhaler or if you want to go OTC...it works the same as L-lysine + ASA (= L-ASA)- if not allergic to aspirin!
Ventolin is a "beta2" agonist(= helper).
GABABR2? Potassium can go back in?
"high levels of *nitric oxide* in exhaled air is proving to be a simple and noninvasive way of diagnosing asthma."
TNF alpha and IL1B look to increase NO.
Too much inflammation.
Try vitamin C (there are timed release capsules) and green tea extract to get them down.
Bb has "zinc fingers" which look to be cysteine and histidine bound to zinc.
When destroyed (actually a good sign)...that histidine can convert to histamine which must be dealt with!
Mg is an anti-inflammatory and anti-histamine and in status asthmaticus (severe asthma attack) it is often given IV.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I have had this off and on for a long time: at present it's very much ON, as I have suddenly gone hyperthyroid [despite a stable Levothyroxine dose for years] and my heart has been going like the clappers, with lots of arhythmia, chest tightness and more.
Although the present situation may not be Lyme-related, I have always thought the other episodes were part of the scenario, even before I knew I had longstanding Lyme and Co.
Of course, it is sensible to check out other options too,
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
TF has very good advice.
I would ask, What do you plan on treating if not TBI's ? Have you not had every test known to man?
I think that you said that once.
Do tell, if you find another cause, I would be so interested!
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Seek,
Lung worms can cause this. I had severe asthma for 40 yrs and it is completely gone since I have treated for parasites and worms. I know you have heard this from me before, but I didn't make any progress until I started getting rid of these pathogens.
I am almost in remission. I think you are right in thinking that bb may not be the main culprit here. IMO, I think that parasites and worms play a much bigger part in this disease than bb.
Antibiotics alone cannot irradicate them or other factions of this complex disease,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
Are lung worms treated the same as other parasites? What do you use?
I have had major chest tightness and breathing problems and can't seem to get to the bottom of it.
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I have the same feeling, which is one of the reasons that caused me to get tested.
After years of inhalers, that didn't help, I went to an allergy and asthma clinic who put me through an entire battery of tests, and came up with the conclusin that I don't have asthma.
However, my lungs are scarred from repeated pneumonia, one very serious bout that laid me up in the hospital for over a week.
My daughter's LLMD put me on Biaxin. It has really helped take away that tightness and pressure. I've also upped my vitamin D3.
Breathe Easy Tea by Traditional Medicinals gives fast relief.
Just a note: I settled on this treatment after making sure my heart was fine and my lungs were clear. So rule out any heart issues.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm still here. As always, thanks for the considerate/thoughtful replies.
Yes, I'm a little pessimistic lately. I feel like my back is against the wall and things are not going in the right direction. My friends/family often say it doesn't seem like my treatment is showing much beneficial results and questioning my Dx. I don't blame them one bit as I feel exactly the same.
I have major concerns about a cause and effect identification of a cyclical aspect of this presumed Bb/co-infection scenario.
I ask myself every day how different is life really on these Abx? I seem to have OK days and terrible days. The number of good days doesn't increase much. The symptoms I had from day 1 aren't much different from now with the exception of deadly anxiety, BUT I stopped putting myself in situations that would cause that as long driving, working, and other real-life scenarios. I can't say I didn't take some different Abx as I've tried Zithromax, Biaxin, Ceftin, Malarone, Plaquenil, Mepron (super low dose and short time), Clindamycin/Quinine, Omnicef. All were mono-therapy or combos for 10-days max. No time have I done two Abx at one time. What I don't ask myself often enough is what are the long-term implications of taking all these drugs? That's scary.
I see others like Sixgoofykids who took massive doses of drugs via aggressive docs and still couldn't live a normal life until Germany and other stuff now. Everyone's story differs. TF, you and your friends were cured with aggressive treatment. Glm1111 said IV abx and aggressive Tx did nothing until Salt/C. There is no consistency w/results whatsoever.
I still have muscle tightness, fatigue, stomach issues, breathing problems, eye pressure, head pressure, and many more that alternate by the day, hour, or week. I find it improbable that being on Abx for 9 months wouldn't yield more improvement in specific symptoms.
Anyone who doesn't ask themselves am I treating the right thing when all you have is a positive Igenix WB makes little sense to me. IF Igenix test results are completely true/reliable (we all have varied thoughts here), this still doesn't mean Bb causes all the issues when supposedly 95% of the US Population has Lyme..lol.
TF, you said I know I have Babesia. I don't know. No positive blood smear. No antibodies showing up. It's a wild ### guess based on a few blood tests that also show 43 other conditions when you type them into DiagnoseMe. I certainly am not saying it's not possible. I'm just saying it's not a sure thing or even too probably based on pure fact.
Feelfit, you asked a good question. What do you do? Gosh if I know. Do I continue to swallow Abx and drive 1,500 miles round trip to an out-of-state LLMD if things never change from where they are? To me, no. I follow people's stories closely here. Those who improve seem like they either immediately get great relief on Abx or slow progressive improvement. I feel as neither are happening to me honestly. It's a shot in the dark what tomorrow will bring. Yesterday it was the ER. Tomorrow, who knows?
TF, you post many times about finding a world class LLMD who follows Dr. B treatment protocols to the tee. Does ANYONE have a country-wide comprehensive list of these LLMDs? Has this been narrowed down? I thought I was getting that initially when I picked my new LLMD, but that isn't the situation. How can I assure myself my propsective LLMD is aggressive AND willing to see patients less than every 2 months? The only docs I know reside in NY, are priced astronomically, and require monthly visits which is absolutely impossible for my wife and I (given a 10-12 hr one-way trip and $$$).
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Seekhelp, I have lived through the frustration and discouragement that you express, but I just want to suggest that it is really important for you to tell your LLMD that you feel you are not making progress. When I was going through this, I would give very direct feedback to the LLMD that the treatment was not making a difference and then I would suggest what combo of abx I wanted to try next.
It took many rounds of different abx combos for me to get better. It is trial and error, and you are part of the team with your LLMD and it's impo for you to be pro-active and to say that you want to try something else.
You have to go after Lyme and each co-infection, doing a regimen for each, possibly more than once.
As far as seeing an LLMD in NY, you can explain you financial situation and ask for a discount. Also, you can have telephone conferences in between visits so that you only have to travel perhaps every six months.
Posts: 156 | From MA | Registered: Jul 2003
| IP: Logged |
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!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
As always, thanks for the considerate/thoughtful replies.
Printer-friendly view of this topic