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» LymeNet Flash » Questions and Discussion » Medical Questions » Any thoughts as to what is going on with me. Real Sick !

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Author Topic: Any thoughts as to what is going on with me. Real Sick !
lymetwister
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I've been running low grade fevers since going on Paleo diet now times 5 mos. about.

They started 2 weeks into the diet with 102.0 and terrible abdominal pain that landed me in the ER. Turned out to be a Candida die off.

Since then, I have run low grades every single day 99.2-100.0 from 12pm on.

My voice gets froggy and soar when these come on. My Herx's are more severe when I treat.

So the million dollar question is: Did my immune system turn on or did I make myself sicker losing the 30 lbs with the diet letting toxins out of the fat cells and now the low grades would be a symptom of the infection ?

Appreciate any thoughts.

BTW, I feel just as sick in the morning when the fevers arn't there. This is more of a clock work thing and I can't say that I feel worse when the low grades come on other then the soar throat, but I feel ill all the time now, as in all the time.

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sammy
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My opinion, you are sicker. The daily fevers are a symptom of the infection.

The reason why I think this is because you have been on the diet for 5 months. You should be feeling better, not worse. You should have adjusted to it by now. You should have detoxed. Your immune system should be stronger.

You should not be having daily fevers. That is a sign of infection. I know that you know this.

The fact that you are feeling sick all the time now, feeling worse is not a good sign. You've also lost a lot of weight. Be careful with that, you can get too weak.

Make sure that your diet is providing you with enough nutrients to heal, remember, at times we can need more than a healthy person.

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Keebler
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-
http://icmr.nic.in/ijmr/2006/august/0804.pdf

THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTIONS

Indian J Med Res 124, August 2006, pp 129-148

- by Anura V. Kurpad

Fifteen pages of text.

Excerpt from abstract on page one:

. . . In general, the amount of extra protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . .

[note: see what author states about lysine supplementation appearing to help immune function.]
-

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karenl
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You also have abdominal pain! This is not the diet and also not candida die-off.
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shazdancer
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Have you looked into Babesia?
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lymetwister
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No Abdominal pain Karenl.

I have Babs Shazdancer.. Could that be all of this ?

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nefferdun
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Dr. F's new pathogen, FL1953 could be giving you trouble in addition to babesia. It causes a hoarse voice. I get it to. It can also cause the abdominal pain. When this started to take over I also had abdominal distress and low grade fever.

A paleo diet is just what the critters need to grow more virulent because they thrive on fat and arginine, which is in meat, nuts and seeds.

Here is a list of symptoms. See what you think.

Symptoms of FL1953 are similar to Babesia. Symptoms include cold hands and feet, headache behind the eyes, scalp sores, sinus congestion, notable teeth pain, heart palpitations, shortness of breath, dry cough, abdominal pain, nausea, IBS,

insomnia, sweats, bladder pain, muscle pain, twitching, profound fatigue, exercise intolerance, insomnia, brain fog, poor balance, anxiety, OCD, irritability, hypercoagulation.

Off and on hoarseness can be a symptom of FL1953.

Out of 103 patients tested for FL1953 with PCR, 78 were positive.

FL1953 herxes can be massive body pain, headache, anxiety, paranoia, hallucination, irritability, twitching, fatigue, joint pain, tooth pain, congestion or sinus pressure, abdominal pain, bladder pain, and increased hypercoagulability.

Have you been treating with anything?

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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lymetwister
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Nefferdun, I was back on Salt/c and Parastroy for Parasites. I was also taking 3 Tbs of Coconut Oil/day.

As I ramped up on the Salt, I started getting Herxy and I just cut back, but by then, it was too late.

My Herx's last for 5-6 days or so. The flares are constant all day long and I can't function b/c of the CNS going nuts mostly. The Aches and Pains I can deal with. Even the massive head pain I can deal with.

I have to be honest with you, and some might jump on me, but I have trouble with this FL1953 bug. I'm not saying he isn't seeing something, but not a single other medical person is giving this any credence. In other words, where is the CDC in his findings ? Why is no one else looking at this ? How is it treated ? What is it ?

This disease is confusing enough without adding other variables. Now, the flip side is that maybe this FL1953 is something to be leery of and something that needs to be treated. I just don't know and for now, I have my suspicions. Symptoms overlap from one infection to another. So hard to figure out what to treat.

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karenl
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In your first entry you wrote about terrible abdominal pain - is it better now?

Salt/ C + coconut oil is too much - you need to
take less and then you can stay on it longterm.

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lymetwister
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The Abdominal pain was with the Candida die off right in the beginning Karen of the Paleo diet, like 2 weeks in. Never had it again, just the daily Low Grade fevers ever since.

Perhaps you are correct re: the Salt/c, but I was also doing Parastroy.

Once again, I ramped up too quick going for the 1,2,3 knockout punch. Will I ever learn ?

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seibertneurolyme
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Gary,

This is just my personal opinion based on hubby's experiences.

I am almost certain that you do have babesia. But I do not think that that usually causes daily fevers -- especially when it is not being treated aggressively or is a chronic long-term issue. In acute infections babesia could easily cause daily fevers.

I think your fevers are from ehrlichia or anaplasma -- forget which species you tested positive for. Last summer hubby had the daily fevers like you for over 5 months. They did not stop until he took doxy. And within a week of doxy at 200 mg 2 times daily they went away. He was on various doses of mino the entire previous 5 months and that did nothing for the fevers.

I think you had the coccobacilli attacking the white blood cells on your Clongen blood slide or some that you made yourself. I do think that is some species of ehrlichia/anaplasma or there is a remote possibility that it could be some strange unknown parasite. Hopefully hubby's next round of bloodwork will shed more light on this issue.

I am doubtful that hubby has eradicated this pathogen even though he no longer has fevers. He still has issues with low WBC which would seem to indicate this pathogen is still present.

I wish Buhner had an herb which would work on ehrlichia/anaplasma but the ones he thinks will work not even he can locate a source for them.

I am still of the opinion that you personally need antibiotics/prescription meds and that your current protocol of rife and salt/c will not work in your case. I am of the opinion that your infection is primarily in your nervous system and you need something very very strong to get into the brain and stop the inflammation.

I can't remember if you have done flagyl or not. But I do know that for hubby even after months on IV rocephin and IV zithromax plus oral tindamax it was the IV flagyl that started his fevers. I am still of the opinion that his aggressive babesia treatment which caused several major hemolysis events somehow uncovered various hidden occult infections and I do think flagyl does work to some extent on babesia especially when combined with other meds.

Gigi is always talking about how parasites harbor other pathogens such as viruses and bacteria. I am not exactly sure if I agree but I do think that if you kill off red blood cells (by treatment or during replication of red blood cell pathogens such as babesia or bartonella) that whatever was hiding in those cells would be released into the bloodstream and if the immune system or antibiotics or killing herbs etc cannot erradicate those uncovered organisms they can become activated.

I think you need to rethink your treatment strategy. Obviously it is not working. I know you don't like to go slow but to be honest are you any better now than you were 5 months ago?

Personally I think everyone treating a long term chronic infection like lyme and company needs to reevaluate and fine tune their treatments at least every 3 - 6 months.

The best way to do that is to try to keep records of symptoms. On some sort of regular basis -- at least every week or two list all your major symptoms and assign some sort of numerical rating scale. Then you can honestly see if you are improving. If you do this weekly or even monthly -- just jot down what meds or treatments were being used at that point in time.

You also need to keep an ongoing list of things that either improve or worsen symptoms. That can help sometimes in figuring out what is going on.

I don't know if you have FL1953 or not but I think for you you already have a number of known infections that have not been adequately treated to worry about. The first rule is to treat what you know you have. Then if you have done everything you reasonably can for the known then look for the unknown pieces that might be missing.

Maybe you need to get Clongen to look at your blood again and get a professional opinion of the predominant infection.

Candida can be a serious infection -- it is what actually kills many aids patients. I do not know your immune status well enough to say whether you have candida in your blood stream -- but if you do then that is a very serious matter. But I do wonder if the salt/c might not disrupt the normal G.I. balance and possibly make a candida issue worse. I am no scientist and don't know enough about how that combo alters the normal G.I. terrain.

If you still have the skin sores you posted in another thread recently then that is very worrisome. I have no idea what is causing them, but feel like that is not a normal symptom and opens the door to possibly other pathogens if you are not bandaging and disinfecting those lesions. Any open wound is a potential problem.

I am very sorry you are so sick. The only thing I can think of that you don't seem to have tried is herbal medicine. Why not try the Chinese herbalist that Lyme MD appears to be working with? Or there are some other more traditional herbalists with lyme experience in your general vicinity -- if she is still practicing the one hubby saw also had a nutrition degree which might be helpful for you.

This is not medical advice, just my personal opinions based on hubby's experiences.

Bea Seibert

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glm1111
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The skin sores Gary posted recently came AFTER he started the PARASTROY! It is the infection/parasites coming out, and I think he is loaded.

I used to get the same skin sores when I used antiparasitics and salt/c.

It is a good sign when the infection(s) start coming to the surface. It's just logical.


The last time he took Parastroy, worms/bugs exited into the toilet which he posted. PURGING INFECTION is a good sign, not a bad one. He just went too fast on increasing the salt/c and Parastroy.

When you are this infected with parasites, you have to go slow, because parasite dieoff can get rough.

Gary is a friend of mine, and I encourage him and pray that he stays on the antiparasitics.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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lymetwister
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Thanks everyone for your comments.

I decided to go back to the Mepron and just start low.

So, I took 1/2 tsp only yesterday and 1/2 of a 250mg Zithromax (125mg).

I had the chills in the afternoon, head pain later in the day, and bad anxiety late in the day, all of this as things were starting to settle down.

Repeated the dose this a.m. Got chills, nausea, bad head stuff, the dreaded anxiety, and a little crying. I must be LOADED with this crap.

Perhaps the Salt/c and Herbs was getting the Babs as the feeling is pretty much the same which is amazing to me.

I should have sucked it up back in 2010 when I had the chance. I could tolerate larger doses of Mepron for longer. This is gonna be next to impossible for me to do this daily.

Just to reiterate to everyone, I was a MD state Wrestling champion when I was younger. I am built as tough as they come. So, my whining and complaining is only b/c I'm real bad over here.

Guess, I'll stay on this dose for a while, suck it up as best as I can, and hope things get better so I can increase the dose down the road. Not sure what else to do at this point.

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seibertneurolyme
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gael,

I did not tell Gary to stop treating parasites. I just suggested maybe the way he was doing it was not working for him.

One doc told hubby to treat the dominant pathogen the hardest. But he did actually try to treat all known pathogens at the same time. Other docs tried just treating one infection at a time -- that method did not work for hubby -- he could never get rid of anything.

We all know that there is no one right or wrong way for anyone. It takes lots of experimenting and trial and error. But sometimes you do have to change direction -- at least temporarily.

Gary -- at least you did have a response to the mepron. Maybe you can figure out some way to combine or rotate between that and other antiparasitics -- salt/c or whatever.

Hubby is convinced that the ivermectin he did did work on his babs -- still don't know if it is gone or not. But he rotated between the ivermectin and artemisinin -- 3 days on each with 1 day off in the middle. And he took the malarone and flagyl daily plus lariam one day per week.

Just start low and slow and keep increasing doses as you can tolerate and add in another herb or med from time to time.

Hubby is absolutely convinced that it was the combo of everything that helped but especially the ivermectin and sida acuta which work by different methods than everythng else.

Before hubby did the last 6 weeks of sida acuta and ivermectin his bloodslides still showed an intracellular protozoa which Clongen felt was babesia although it could not be cultured or identified by PCR. Will know sometime this week if that is actually gone.

But that pathogen was still there after 12 months of high dose malarone and all the other things hubby had tried including IV clindamycin and quinine and then the high dose lariam for 4 or 5 months I think it was with the oral flagyl.

Nothing about treating these pathogens is quick and easy unfortunately and sometimes it is really hard to tell if you are really making progress. That is why I suggested some sort of symptom log. Hubby can actually remember the details of his symptoms and treatments much better than I can but having it in writing does help both us and his docs to see patterns of what is and is not working.

Hang in there.

Bea Seibert

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nefferdun
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The sores on your body could have been Morgellons which is related to FL1953. You might try ivermectin and doxy to see if that helps you.

I have the fevers too. My body temperature used to be 96.8 to 97 all of my life. Now it is often 99 or above. I am guessing Fl1953 but I don't know for sure.

More than likely you have methyl cycle mutations which make it very hard for you to tolerate abx because you cannot detox. It also affects your immune system and gives you a stronger tendency to have hypercoagulated blood. In other words, your body is the perfect storm for disease.

The complete 30 mutations Yasko panel costs $500 and comes with recommendations for treatment but it takes 10 to 12 weeks to get the results. That would help correct the basic problem you are having. You could start the simplified protocol while you are waiting for results. Just the methylfolate is pretty cheap.

I don't believe it is possible for us to recover when we have untreated methyl cycle mutations. We can't produce enough glutathione to detox or keep the immune system active. 90% of people with methyl cycle mutations have the CBS mutation which causes excess ammonia and stimulates stress/cortisol flight or fight responses. The treatment includes a vegan diet! This was the clincher for me in adopting Dr. F diet.

http://www.heartfixer.com/AMRI-Nutrigenomics.htm

I believe changing to a low fat vegan diet would help even if you don't have FL1953. Babesia becomes more virulent on iron and meat is full of it. To help get rid of the iron you have, Lactoferrin binds with it. You take it at bedtime. If you do have FL1953 it thrives on lipids and arginine. Arginine is in meat, nuts and seeds. Don't feed the pathogens what they need to thrive.

Thinning your blood will help whatever meds you are taking penetrate deeper into the tissue. Lumbronkinase on an empty stomach 3 times a day will help with this but it takes months.
Lactoferrin and lumbronkinase break up biofilm.

The whole point of the low fat vegan diet is to break down the biofilm. The difinition of insanity is doing the same thing over and over expecting different results. Anyone who has been sick for a long time, needs to reevaluate EVERYTHING including DIET.

When you take mepron with a high fat meal, if you have FL1953 you are fueling it. Drop the coconut oil. It didn't work for me either. I know I had babesia because I tested positive for it but with treatment although many symptoms went away, the fatigue and brain fog stayed. That is FL1953.

Do you have insomnia? Babesia makes you want to sleep. Fl1953 disturbs your sleep.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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glm1111
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FACTS vs CONJECTURE

Fact.. You take an antiparasitic and parasites emerge at first as sores

Fact..you take an antiparasitic and parasites come out into the toilet

Fact.. .This is purging/detoxing the infection

Conjecture...labeling it as another infection such as FL1953 or babesia

Conjecture.. labeling a co-infection of Lyme and calling it Morgellons, a name someone came up with



KEEP IT SIMPLE...

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Keebler
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-
I'll add to the KISS (keep is simple, Sweetie) approach:

Keep the pace steady. Jack rabbit starts and stops are not good even for our cars. Worse for us.

Sometimes the road is just going to be rough. Easy shifts and gentle changes work best with our bodies.
-

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