I have been gone for years, fighting a lawsuit brought in 2014. I quit ABX at the same time. I am not sure if I am still infected and would appreciate some feed back.
Is protomyxzoa still considered a real infection? I quit the low fat diet in 2015 and find it impossible to get back on it.
These are my symptoms. I have had daily headaches that can only be taken out with imitrex. I feel tired a great deal of the time - no motivation. The soles of my feet hurt when I stand up after sitting for a long time. Lately, at night my back hurts by morning unless I sleep with my head elevated.
I had a UTI and the doctor put me on Bactrim DS for five days, during which time my headaches left. Then they came back. The UTI returned a month later and the doctor put me on Bactrim for ten more days. The headaches were gone all during that time and came back as soon as I quit.
This makes me think the headaches are caused from a lingering infection. I have also had vertigo for almost three months but it seems to be getting better.
For a couple of years I had episodes when I felt like I would collapse. I had the fight the law suit pro se and it consumed every waking moment of my life. My diet when way down hill. Although I remain a vegetarian, I began eating sugar and fat again - lots of it. In fact, I gained 25 pounds!
So maybe I need to see a LLMD and get tested again. What do you think? By the way, I will be 72 in January, so some of this could be age related.
Posted by Bartenderbonnie (Member # 49177) on :
It's so strange that we dismiss symptoms of TBI's, even as they slowly creep back, going from Doctor to Doctor, maybe it's this or maybe it's that. I KNEW better but forgot somehow.
The lack of quality care INSURANCE covered LLMD's are the reason why Lyme patients suffer so inhumanly. We will do anything to get better if we are given the chance.
Posted by hiker53 (Member # 6046) on :
nefferdun--I think an appointment with a LLMD is a great idea.
Posted by nefferdun (Member # 20157) on :
Thanks. There are no LLMDs locally and the closes ND is about 200 miles. I just emailed one of them that does Skype. I want to get tested again.
What do you guys think my symptoms indicate? I am worried it might be the Fry bug.
Has the Fry bug gotten a new identity? Is it an accepted infection now? Is it still considered incurable? I was tested at the Fry lab and had it. Rats.
I do hate that low fat diet. A so called friend told me I was too skinny and I needed fat. I just ate half a plate of pecan slice Christmas cookies. Last week end I ate a whole box of Whitman's Chocolates.
Posted by Keebler (Member # 12673) on :
- While the nurturing part of me thinks all of us humans need, well, nurturing, the science part of my brain is reeling a bit from the sugar contents of what you describe.
Hope the fat content was at least stable fat but, with sugar, even the best fats can spell damage.
The sugar and accompanying insulin spikes - and continued high insulin from all that is bound to make you hurt in various ways and have a bit of a "hangover" for days.
Can you eat meat & some of the good fishes? I am not sure why you are vegetarian. I was for 18 years and I felt it nearly killed me. I was much better with meat. So much better. There are ways to get meat that has been pastured, etc.
Yet, if vegetarianism is solid for you, two major issues: blood sugar can be sky high with vegetable based diets and the lack of muscle meats / fish / eggs can leave some weak.
While some folks can do this okay; others just cannot. You might want to revisit what your body says it needs to eat.
If you are going to eat fat, ghee from grass-grazed organic cows is a good start.
What I've learned in the past 7 months of 2 doctor lectures a day regarding the low carb / high fat approach is that it really helps keep glucose down and - actually more importantly - keep the insulin spikes & high circulating insulin down.
You might not have to go all the way to an official "low carb" of 50 grams or less but maybe even under a hundred (which is far, far lower than even a cookie, likely) . . . and you also might not have to go to the high percentage of fats yet still more, good fats (included saturated fats from organic, grass-grazed ruminants like cows, lamb, etc.)
There are still ways to have delicious and filling foods.
If you want to look at research around this approach - beyond for diabetes and for seizure control,
VIRTA HEALTH, see their RESEARCH tab. The kinds of physical issues are many that are helped by this approach.
Just a thought. I do not agree with low fat diets. I think they can be dangerous. Still, you can find a middle ground that suits you.
If you could get a glucose meter and test strips, that's the best way to see which foods spike glucose. Dr. Richard Bernstein, a diabetes expert suggest 83 is the best number and going up maybe only 10-15 points after a meal.
At first I thought this impossible. Yet, it's actually easy for me, much to my surprise. I was certainly in the pre-diabetic range with past glucose reading 130 or more after meals.
While this protocol is not likely to cure all ills, it's a base line start because so much damage happens to our nerve cells, our liver, etc. with glucose / insulin. I find the research and all the lecture to be fascinating.
Low Carb Down Under . . . Dr. David Unwin (in the UK) . . . Dr. Tim Noakes (in S. Africa) . . . Ivor Cummins (from Ireland) . . . and so many more are good names to search on YouTube for their presentations.
Gary Taubes (the Case Against Sugar) . . . Dr. Robert Lug(?) . . . Dr. Gary Fettke (Is Fruit Good or Bad for Us? Hint: it clobbers the liver)
Nina Teicholz (The Big FAT Surprise). All have lectures -
Posted by nefferdun (Member # 20157) on :
Thanks for your input Keebler. I was completely off all sugar for years, especially while on ABX. There are substitutes, like coconut palms sugar and stevia that do not spike blood sugar. I seldom eat white sugar - mainly honey. I never ate candy until this year when I received boxes of it as gifts.
The uneasy fact is sugar can be addictive to some people, especially those with a family history of alcoholism, and I have to admit I am addicted to it. I admit to that every morning and then around ten AM decide, like you suggested, that everyone needs some nurturing.
White flour, which I don't eat, is 100 on the glycemic index, so it is the same as eating sugar. It is hard to admit that even home made cookies with whole wheat and honey might be responsible for my feeling like I am a flat ball.
I was told by two doctors not to eat meat. First because of the PR. Secondly because of the CBS mutation, I cannot process the sulphur. The most important reason I do not eat it is because I love animals. I quit mammals ten years ago and then became a complete vegetarian in 2012. I eat eggs and dairy, although if I am on a low fat diet - very little cheese and no egg yolks.
I am trying to get back on track but the ruts refuse to release me.
Posted by MissVictoria (Member # 45232) on :
I'm sorry you're not feeling well. I would definitely see a LLMD. Also, be sure to get tested for Bartonella because you have sole pain and bladder issues
Posted by nefferdun (Member # 20157) on :
Thanks MissVictoria.
Is pain in the soles of the feet a bartonella symptom? That is what I was wondering.
Bartonella was the last thing I treated (besides PR) and I treated it twice. I had swelling and pain in my shins but that went away. I don't have muscle twitching any more either. Bartonella was the pits with the anxiety and insomnia.
The symptoms I have now are vertigo, fatigue, headaches, sore soles of feet, back pain and lack of motivation- which kind of sounds like babesia - but no sweating or muscle cramps. My thinking is not as impaired as when I was treating it before.
On the one hand I am not nearly as impaired as I was before so I could accept this as just getting older - but on the other hand, it sure would be nice not to have to feel this way and to be able to do more thing.
Posted by MissVictoria (Member # 45232) on :
You're welcome. Yes, sole pain is a tell-tale Bartonella symptom, and it can also cause bladder problems
It's definitely a good idea to go back to your LLMD. It's not normal to have all of those symptoms, and you can get better if you treat the infection(s)
Feel better <3
Posted by Robin123 (Member # 9197) on :
A craving for sugar could also indicate a candida yeast infection, especially if you also crave bread. Sugar feeds lots of bad critters in us. It can also feed cancer cells.
If people are up for it, I usually suggest a step-down, ie just eating sweet fruit which has fiber along with the fruit sugar, then after sugar cravings are done, then veggies and lean meats. Best done after the holidays are over! Too many temptations!
I don't have headaches, so I have a question for the board - could headaches be a possible indication for ehrlichia, which I know causes headaches, or do some Lyme patients get headaches like what nefferdun is describing here?
Posted by sebreg (Member # 44928) on :
Foot issues sound like bart. I suspect the Fry bug to be similar or same to babesia. Fry has fallen off the radar quite a bit. Interesting that bactrim helped your symptoms. Headaches plus fatigue often makes me think protozoal infection like babesia.
I did the low-fat diet for a long time, my original diagnosis was the Fry Bug back in the day. I don't do low-fat anymore, just no refined sugars and avoid gluten and dairy. I find minimizing sugar to be the most helpful.
I've found consistent improvement by treating with babesia meds, so whether I'm treating babesia or Fry Bug I don't know, my doc thinks it's straight up babesia but I haven't confirmed via lab test, just based on clinical picture and consistent flaring to antiprotozoals.
Things like coartem, malarone, clindamicin, etc have proven extremely effective over time. Ivermectin was also very effective, alinia as well.
Have had to rotate through various combos, lots of herbals too like A-bab (I find this to be strong and effective), artemisia, liposomal artemisinin, CSA, allicin... basically have had to throw the kitchen sink at this thing.
I hope you find the right path for continued healing!
(Breaking up a paragraph for easier reading for many here)
[ 12-25-2018, 04:55 PM: Message edited by: Robin123 ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Robin123:
A craving for sugar could also indicate a candida yeast infection, especially if you also crave bread. Sugar feeds lots of bad critters in us. It can also feed cancer cells.
- Getting off sugar will indeed make you feel much better. I agree with Keeb about the low carb diet. I need to get back on it myself.
I have an issue with salicylates though, so it's pretty tough.
Posted by nefferdun (Member # 20157) on :
My goal after today is to eat plenty of good food so I am not binging on home made goodies. I know if I quit eating the sugar for just three days the cravings are gone.
I am glad to hear other people have gone off the low-fat diet and are doing ok.
What helped me with PR was ivermectin and liposomal EDTA. I have ivermectin so I can see if it helps -
The last infection I treated was bartonella. Bactrim knocked it down. Funny that Bactrim stopped the headaches - maybe bartonella is still there.
The bad thing is I take imetrex every day to get rid of the headaches and I have done so for as long as I can remember. A doctor told me it can cause heart problems and I am getting twinges in my heart.
I did a treatment where a doctor sprayed block on the nerves up in my nose. That helped with the headaches but they came back. It is supposed to help with other types of pain too. You just have to keep repeating it when the pain comes back. I got vertigo and cannot put my head back to get another treatment. I felt better not taking all of that imetrex.
I can't even find a regular LLMD - only LLNDs. I went to a local LLND that charged me 3K for IV treatments - refused to test me or give me meds for bart.
I finally flew to WA to see another ND who gave me Bactrim. The problem is she was sending me boxes full of supplements, tried to bill me a thousand dollars and would not continue to treat me when I sent the last box back.
Posted by ukcarry (Member # 18147) on :
Hi Nefferdun, firstly, I agree that an assessment by an LLMD would be a good idea.
I also think it might be worth going to see a biomagnetic pair therapist if there is an experienced one in your area, as this therapy can be effective in both diagnosing and treating individual infections, whether bacterial, fungal or viral. It also has points for some parasites, but is better, I think, on the other 3 types of pathogens.
Good luck with finding out what is going on.
Posted by nefferdun (Member # 20157) on :
Thanks ukcarry. I am having a hard time finding a LLMD within 500 miles. Dr. R in Seattle is not taking new patients. Everyone else is a ND. I am not sure if they can prescribe the drugs I need.
Posted by Phoiph (Member # 41238) on :
Hi nefferdun~
I am sorry to see that you are having issues again.
You may not like what I am about to say, but in my opinion, chasing bugs (like protomyxzoa) is like chasing one's tail. Even worse for healing the nervous system and gut is a low-fat, vegetarian diet. Good fats are key to healing.
The only way to get well and stay well, IMO, is by supporting and healing your immune system (most of which resides in your gut) so it can do its job.
Our bodies have more bacteria than we have our own cells (some good, some bad). Most of the time, a healthy immune system keeps everything in balance.
If one keeps getting tested for bugs, and then pursuing and treating these individual bugs with immune suppressing drugs, it will be very difficult for the body to do its job.
You must build a strong foundation.
If you keep going down the same path, then you can expect the same result. My suggestion is to look for people who have become well or are greatly improved and on their way, and learn from them.
I know of many who are willing to help by sharing their knowledge and experience...just ask!
Posted by nefferdun (Member # 20157) on :
Thanks Phoiph.
I was well but due to the stress of a ruthless lawsuit hell bent on destroying me, I went down hill.
At first it was the return of daily headaches, then the soles of my feet hurt and I had episodes of feeling I would faint. Little things compared to the pits of full fledged Lyme, so I ignored it.
As I sit here now, I have zero pain anywhere - typical of most of my days. I feel pretty "normal" except I have no idea what normal is any more.
If it wasn't for the fact that my headaches went completely away when I was on Bactrim for a UTI (I thought was unrelated),and then came back immediately after stopping it - I would not be seeking help again. That strongly indicates an infection.
I have been off all treatment since November of 2014 - a long time. I think we all know, it can come back - and we hope it doesn't.
I agree it is super important to take care of your immune system but sometimes things happen beyond our control. It occurred to me, maybe part of this feeling of despair is infection.
Posted by Phoiph (Member # 41238) on :
nefferdun~
Regarding relief of your headaches on antibiotics...
Are you aware that many antibiotics have anti-inflammatory (and sometimes immune-modulatory) properties?
IMO, you may have been experiencing this effect, rather than a reduction of "bugs".
Also, I just had a discussion with a very brilliant doctor, who explained that some people, depending on their genetics, can experience a short-term improvement/facilitation of the methylation/detox process while on certain antibiotics.
That said, he added that it is a high price to pay for losing your gut biome, and there are much safer and more effective ways to facilitate this process.
He also agreed with me that this is why sometimes people with chronic Lyme feel better on antibiotics, especially at first, but they don't often get well as a result.
Posted by Ann-Ohio (Member # 44364) on :
Shouldn't this be on the Medical Board? I am sure lots of people there would love to read these comments. Hope you will check out the Support groups in and near Montana (menu on the upper right) and ILADS and others who have physician lists.
Posted by nefferdun (Member # 20157) on :
That is interesting about anti-inflammatory properties.
I just got back from my primary care NP, who was useless. I feel like I am detached from reality - another bart symptom I had forgotten about.
I have checked all of the lists - ILADS, Montana support group, this group....Hopefully a homeopathic doctor will return my call and offer some help.
Leaning towards self treatment, which I have done before.
Posted by Phoiph (Member # 41238) on :
You may want to read the mild hyperbaric thread.
There is a lot of success there which may give you hope.
Posted by nefferdun (Member # 20157) on :
I am not going to invest money into any more expensive cures that do not work. DR. S. says hyperbaric does not work for bart and I believe it.
Certain people on lymenet promote certain cures like a certain brand of herbs, hyperbaric or rife or LED treatment. I believe some of them, like you, are sincere but I also believe some of them may be planted on this site to help sell products.
I want to reach out to everyone with lyme and new to treatment to use their common sense and not their wishful thinking. These infections are serious.
I have found drugs suppress them. Then healthy lifestyle helps to keep them suppressed. When they come back, you need drugs again.
The only "alternative" treatment I suggest is low dose naltrexone to boost the immune system, and liposomal EDTA to clear heavy metals and break down biofilm.
The infections attack the brain so you can become apathetic to what is happening. You need to stay on top of it. You are not normal, will never be normal and must accept that, to get into and stay in remission for as long as you can .
Posted by Bartenderbonnie (Member # 49177) on :
A new therapy that is becoming very appealing to me is medical THC and CBD used together. Start at 1mg, work to higher dose. My pain is unbareable and is impeding my ability to get well, agh. Just thinking out loud.
Posted by Phoiph (Member # 41238) on :
nefferdun~
Of course you are entitled to your opinions and beliefs, and I respect that.
The reason I suggested reading the mild hyperbaric thread is so you could learn of other's journeys and successes with a treatment that you may not be familiar with, or have considered.
For the sake of others who may be reading this, I must add that hyperbaric oxygen is most definitely based in science, not "wishful thinking".
I agree with you completely that these infections are serious. I had severe Bartonella (along with Lyme, Babesia, and myriad other co-infections) and was homebound for years, given up on by doctors (including LLMD's). I was mentally and physically disabled, in suicidal nerve pain and near death when I began mild hyperbaric as a last resort. To my surprise, over time it gave me my life back 100%. I have been completely well and med-free for over 5 years. I no longer live under the shadow of Lyme disease.
Also, for the record, I continue to offer assistance to anyone interested in mHBOT because I have seen it work for so many people. (If it didn't, I wouldn't be wasting my time.) I don't sell anything and have never asked for a dime from anyone. (In fact, a growing number of people with zero financial resources have been able to access chambers through crowd-funding and chamber-sharing programs.) I do this because I am so grateful to be well, and enjoy watching others regain their lives.
I completely agree that there are individuals out there who you must be cautious of. I was taken advantage of by many in my impaired state and desperation to get well. (Case in point, Dr. S, who you mention, charged me over $2,000 from for a single, 20 minute phone consultation, and offered no plan or hope of recovery. He then failed to keep my scheduled follow up appointment, and charged me for it anyway without refund. For me, that was certainly one of many "expensive cures that did not work"!)
Things are not always what they seem. I am grateful every day that I didn't give up and continued to consider alternatives.